Sian's Blog

Yay it worked!

2011-12-19T10:40:00.000+01:00

So I have found my way around the new interface - you can tell I don't blog that much, eh! I think this interface changed at least 3 months ago. So, yes, my post is on my blog. And there was something else I wanted to add, but it has flown right out of my head. I am a butterfly, fluttering by, beautiful but short-lived. No, that's negative. Or is it? why do we all desperately want to live long, without necessarily living well? Why not just say, bugger this, I've had enough, let's see what's next? Surely death is our greatest adventure?

Anyway, that sort of rather scary philosophising is not what I actually wanted to talk about, which has now come back to me. Work. I am signed off for the month of December - at least it's a holiday month a lot. I hope to be back at work first half of January - this really is not a big intervention physically, although huge emotionally. But I am so angry at this bloody cancer coming along again now, just when I was starting to be effective again, just when I was starting to be appreciated again just when I was about, at last, to be promoted. Who is going to want to bet on someone who is going to get a new cancer problem every 2 years or so, or at unpredictable intervals require time off for treatment, and be emotionally undependable?

No-one, that's who.

Damn it.

I'm not quite sure about this

2011-12-19T10:26:00.000+01:00

I seem to have lost my blog. At least I think I have. And this may or may not be posting to it. I'm confused. When I log in, I can see posts from all the blogs I follow (the darling Tilling-sur-Aude most, of course!), but I cannot see mine. Where is it? Why am I being thwarted in this way? I could easily spiral into a 'life hates me' moment.

And ok, since today is the day that I go to hospital to have (probably) a lump of lung cut out, I could be somewhat justified about that attitude. I prefer to consider it as 'cancer loves me' - I'm a lovable sort of person, who can blame it? However, I do consider it to be selfish in demanding so much attention just at Christmas, which I had intended to spend with my parents, keeping them company and preventing my brother from feeling too guilty at not having them up at their place.

I am concerned about the food. Crimble is a time when one should be stuffing ones face and feeling far far too fed. I have stayed in hospital at weekends, when the staff is minimal: food is not good. And since I have a certain amount of special eating requirements, I could say, food is inedible except soup, which has the benefit of being wet and tasteless.

I cheer myself up from a conversation with a patient in the waiting room at this new hospital (Arnaud de Villeneuve, not been there before). He said the food there is great. Apparently they stole the catering staff from another place that was being closed down, and they do lots of lovely stuff, including pasta. Pasta I can eat. I am a highly gifted pasta-eater. Even if there's no sauce, as long as there's a bit of butter or olive oil, I can shovel it down. Also rice. I live in hope.

Now there's the phrase for the day. Live in hope.

Oh - one point. I might be rejected by the hospital, because as of Thursday evening I came down with a cold. I have drugged myself to the absolute max., including finding a few old anti-biotics for respiratory-tract infections in the cupboard; I took them as a precaution, because I could feel the tightness coming, and they definitely helped. But I didn't have enough, so today I am preventing snottiness with sprays and pills; and taking some anti-cough stuff, even though I'm not coughing; and I hope, hope, hope they don't decide I'm not in a fit state to operate. It is a dody situation. But I really do not want them to post-pone. Crimble in hospital n all, I'd rather get it over with and know where I'm at.

Oh wish me luck, everyone.

Bloggie de Riviere

2011-08-12T22:13:00.002+02:00

Rather like Tilling sur Aude... a link to another franglais blog that all my franglais friends will enjoy, I'm sure!

http://sarahhague.blogspot.com/2011/08/ticking-of-old-office-clock.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+blogspot%2FabhTR+%28St+Bloggie+de+Riviere%29

I love this comic, but I sort of wish I hadn't read this...

2011-08-12T22:02:00.001+02:00

The comic-writer's wife has had (been treated for) cancer. This is the comic I just found... So accurate!

http://xkcd.com/931/

Figures for tonsil cancer are generally considered to be a 50% chance of survival > 5 years. That's not a very happy thought. On a big plus side, those figures are now quite old, and treatment has improved. So I could say 50% survive > 10 years; or maybe 75%> 5 years; or both, of course; and I may or may not be in the 50%, or the 75%, and that's the real buggery bit this comic says, of course. You live, as my doctor so depressingly put it, with a sword of Damocles hanging over you. You just do.

So, thinking all that stuff, why aren't I throwing up my humdrum life and going off round the world, breeding cats, writing my great novel, using the money I have to live for what may be my last few years to the absolute full? Above all, why the hell am I living a life that I really do not enjoy?

Paradoxically, it's because I'm scared about life if I do survive, and am scared by life now. I don't think I used to be scared of anything really, but now, I am, and that scareyness has made me stop taking any chances or stepping out at all. I want to live old, and I want to get really good treatment for whatever ailments I may have when I'm old, and I want to be able to live comfortably, and I don't want to be poor. So, I am putting up with constant pissed-offedness and frustration now, in the hope I'll be able to afford to live in not total penury when I'm old and alone (because, remember, I have no children to care for me in my old age).

No, OK, I don't approve either. But it doesn't half knock you for six, takes your feet out from under you, and that at an age where many people are finding life and ageing a challenge anyway. I'm really very very lacking in confidence.

I am still hoping to gain... a sense of self-worth through my work. I am used to being appreciated, I am used to being a star, one of the best; and I am actually really stubbornly sticking with what I have now, because I want to be acknowledged, I want them to promote me. I want to be a success. Then I won't mind leaving!

Plus, of course, there is just not much choice round here. I feel so trapped.

Mixing up names

2011-06-19T10:54:00.000+02:00

Schopenhauer and Schoenberg. Not mixable? Sure they are, I just did it. I mix up Barbara and Beatrice (and Brigitte); Sam and Steve; Peter and Paul. If I get the first sound right, I'm generally doing quite well. Mixing up Tom and Alan is not beyond me.

However I had massive disdain thrown upon me my someone I've not met and obviously never will. Also disdain from them for apparently giving them advice on their relationships, (which I did not, I gave an opinion of possible challenges, which is not the same thing at all). Wonder why they've never, ever had a relationship with anyone, ever? maybe because they are a stuffed shirt aunty, incapable of normal human intercourse, including hearing an opinion that they don't necessarily like or agree with (politely stated), without taking umbrage.

It's not like me at all to get annoyed by such things! but I found them downright rude and it's wound me up.

With special thanks to:

2011-06-18T13:12:00.002+02:00

I realise I did not do my friends in the UK proud. I was housed, fed, entertained and cared for by some dear lovely people, and I would like to say special thanks to:

Rachel - wonder-cook, Scrabble player, gossiper and gardener extraordinaire, plus lovely friend who I've known about the same length of time as Michael!

Helen - Rachel's lodger who was really helpful and leant me a phone, a travel card thing, and conversation.

Michael - and goats - for caring and sharing. Especially the sharing. Long long talks and lovely food.

Julie and Edwin - for being bonkers yet and at the same time lovely.

Kate - for being their daughter and yet still relatively sane. All things are relative. Bestest cusnin and funny woman. Not got the cooking bit yet.

Debs - for being my best friend and also for knowing that Cooking is Love. Thank you for the love, the talk, the cribbage, the dogs (well, ok not them) and the pretty bedroom!

Al - for joining in the cribbage and the Scrabble, and for the interesting falling-over incident :)

Elizabeth - well actually for much the same as all the above! I have now adopted roast asparagus as a regular dish.

Apologies to everyone else who I didn't see. I Will Be Back. You are warned!

Hello Keith

2011-06-18T10:40:00.001+02:00

I have just seen that I have a new follower, how very chuffing. I have since investigated a little further and found that he homes a sort of centralised blog, 'A Taste of Garlic', which aims to link to all sorts of other expat-in-France blogs, plus doing a bit of blogging journalism. Good stuff. Have recommended Nilz' blog, at least it's interesting and mouvementé and not health-obsessed!

Considering starting a non-cancer blog, but not sure I have anything interesting to say. Fairly good at waffling, but I expect I'd mostly talk about cats and the things I'm supposed to be doing (gardening, housework...). Of course, updating my normal-life-blog would be a new and wonderful excuse not to do those things!

I'm alright I'm alright I'm alright

2011-06-18T10:35:00.000+02:00

I spent time with the surgeon (who still won't marry me), he showed me the scans and how they decide whether there's a problem. In this case, the nodule - which shows as a white blob - is the same size this time as 2 months ago, 9mm; so they consider it to be stable and not a problem. I'm back to 6 month scans. Woop!

At the same time I had him look at the lump I have on the inner lower right back jaw, by the wisdom tooth. He says also not cancerous, but he gave me the number of a dentist who specialises in working with radiotherapy patients: I may have some issues with the jaw bone, as in bone death. They don't like saying it like that, they prefer 'osteonecrosis'. Big words, same problem. Probable surgery. Rats. Better then cancer, though.

No-one's reading this... except maybe Sreich (who he? Ed)

2011-06-10T14:43:00.000+02:00

Clearly all my regular friends and followers have wandered off now the crisis is over, but again, for passing people who (like me) were scared and wanted to know the follow-up, and for Sreich because I pointed him here, I will give an update - although more to come next week, I guess.

So, the results from the last scan were 'it's still there, we'd rather it wasn't, we think it's probably nothing so you have to remain positive' and another scan in 2 months - that's next week now.

I initially had kittens all over the place - my cats were not impressed - but only for a few days. Then I decided there was nothing wrong. Or, if there is, I will deal with it when I get there, and it will be very minor compared to what I had before, because in its infance. So - no problem, and positive thinking goes on!

I had a complete BLIND back in the UK, saw loads of people, didn't see loads more, but really got back to being me - was energised, regained my confidence, made another step towards being nice to myself (I got tired. I stayed where I was for a week and didn't go and see some of the people I was intending to), talked and talked and TALKED, played Scrabble, played Crib, and TALKED. Actually made my mouth hurt from talking so much!

Back here, people keep remarking how fantastic I look, how I am glowing, and I was - still am. However, sadly in the domestic centre smiles are still not accepted currency. I am not taking it personally - it's not because of me, and it is not me seeing a biased view - so outside of that, I am still managing to be full of pezazz. Perzazz. Pazzazz. Oh, whatever. Zip!

I had a very successful interview on Wednesday, and also my internal team is being reorganised and it could be very interesting, so all in all, watch this space.

So... the excitement continues eh

2011-04-21T13:07:00.001+02:00

I havn't posted since February, and that is good news. In fact I have been feeling better and better - yes I'm still taking the tablets, and they are definitely helping to stop me killing L; not all the desire to kill him being his fault, poor thing. I am generally more balanced overall, and moving back towards the energetic, positive person I vaguely remember as being me. I have been or several internal interviews within Dell for better, more interesting, or at the very least DIFFERENT, jobs, and I believe I am coming over well. All looks lovely.

But, oh! the universe cannot let such pleasures continue, eh?

So I had my scan in February, including thorax (lung cavity). That showed a teeny nodule in the right lung, which could be nothing, it was a clean round shape, and could easily be the sort of passing nodule that we all get; but they don't like to take any chances so in March I had a PET scan - the sort where they inject you with a radioactive product and you glow afterwards. Then yesterday I had a follow up normal scan. Surgeon called me back same day and said nodule was still there, whereas he would like it to have gone. He is not sure about it, so he is going to discuss it at the weekly team meet on Tuesday. I'm in Spain on hols. next week, and he said he wouldn't bother me while I was on holiday, I should call him when I get back. Depending how tense or not I am, I may call him from Spain anyway. 'Don't want to bother you while you're on holiday and anyway you need to relax' sounds like he expects it to lead to treatment needs, or at least further investigation, rather than a 'don't worry it's fine'.

So anyway my brain has turned back into a sponge, it is quite amazing how I cannot concentrate. Work has told me to stop for the rest of the week which I am, but I found doing something was necessary, so I went and cut hedges for as long as my pathetic hedge-cutter's battery lasted. Am recharging and will do more, then will take residue to the dump. Busy is better than brooding.

So watch this space, if you happen still to be following.

I really do not want them to say 'start treatment immediately' and bugger up my trip to the UK.

It's like buses, eh

2011-02-20T12:50:00.000+01:00

Nothing for months and then they all come along at once. No, I havn't finished having my say today, and I think it would be healthy for me to start using this again more often. Sharing my fears also helps me to control them. But I note my last post was in November - the all clear scan - but I will mention, it didn't cover the thorax (lungs) which is why they're doing another one now, because it should have done then. This IS routine - but it is routine for a reason. And the all clear - the surgeon when I was him did say things like 'well, your cancer was well advanced, you can still get bad surprises even with regular scans'. So, I'm not being paranoid, I am still high risk. Which I'm not enjoying much.

I have always been prone to upper respiratory tracht infections, and I started getting that 'can't breath properly' feel a few days before the symptoms of my cold started. So I'm worried.

But I got into a state before my last scan, so I'm getting into a state before this one too, and soon it will be over and I will be fine.

If I DO have a metastased lung cancer, I'm bloody well leaving here, leaving work, and just going to put all my bloody energy into having a good time before I die. I'm not having fun in my life at the moment, and I'm fed up about it, but I feel I'm in a waiting loop. No point making big changes while I don't know. Then my brain flips and I think, hell, I may not live long, so why aren't I doing exactly and only things that I want to do, and sod everyone and everything else? Then my brain flips again and I think, shit, but cancer treatment is so good now, there is no reason not to be positive about it, so I shall probably live to a ripe old age, how the bloody hell do I pay for that? And I go into the other negative spiral. Then I try to stop that, and I end up doing nothing. Stasis.

Better than metastasis.

General update... nothing special

2011-02-20T12:39:00.000+01:00

In fact, it really would be time for there to BE something special for me to blog about. I read other people's blogs and they are all doing things, meeting people, having fun, rushing about - life, quoi. I am... well, I don't leave the flat much, I realise. Flat - car - shops; flat - car - therapy of some sort; flat - car - office. I am trying to force myself out more. I have become seriously de-socialised, and going out is- a bit scarey. But very energising when I do it (well, not the weekly shopping). Went into the office on Friday and had a really positive day, met new useful people, lots of networking etc. etc. Should do it more often, but - don't.

I have taken the step of managing to find a British contingent in Montp via Facebook - not met any of them yet, but have identified the organiser of weekly get togethers, and he is going to tell me when they occur (not regular). I would like to meet some Brits. I would like to make some friends, generally - and my own, not just people L knows or has been married to.

I am seeing a therapist - counsellor - whatever you call her. I probably mentioned that in a previous post, but havn't looked to see. I suffered from suicidal depression around Xmas, she has helped me to come out of that, and is helping me to bring back the positive in my life. I'm so nervous of everything now - and trying to work out what to do about practicalities like, I can't get life insurance (or not at an affordable price) to cover a mortgage - how much can I afford - I need a place of my own! - where? do I want to be here? - why havn't I cancelled the insurance for the flat I havn't been renting for 3 years? why am I so crap? - life in general just seems really hard to handle - plummeting self confidence, do I need to worry about my future, what's my life-expectancy, 5 years, 10 years? I'm finding my breathing slightly difficult and they are doing a lung scan (that is routine, because my cancer can easily have metastased; I incidentally am finding it slightly difficult to breath, please note I've had a cold), have I got lung cancer?

Well, that was letting my brain free-wheel for a moment. So, I'm still in a bit of a state, I notice. But overall, I try not to be, and of course that is why I havn't cancelled my insurance/paid my house tax in Limoux/done lots of other practical paperwork stuff/don't go out - I avoid anything I don't like, ignore anything that can perturb me, and generally be an ostrich. It's getting better I'm sure - although I'll be pleased to get the all clear from the scan beginning March.

I wish L liked the outdoors more, it would be good for me to go out walking in the country more, in company, in the sun, enjoy the view and the wind and the birdies, he just doesn't care about that stuff. I am just not good about getting in the car and driving to places to walk - I like it to be immediately available. They are building on the part that was still wild here. I do like to enjoy that stuff in company too. Oh well. Getting out of bed would be a start, eh.

One year scan all clear

2010-11-23T10:18:00.000+01:00

I got myself into a real tizzy about this. I don't know why. There was no physiological reason to be anxious - all is going swimmingly. And I was never in a state for the other scans, and I've had a fair old few. But this time, I was really really scared, and absolutely foul because of it for a fortnight before hand.

It was fine. My radiotherapist was his normal lovely self - his baby sleeps well now - and he gave me a thorough examination, which hurt; it's all a lot better but when you prod it, it still hurts. Especially under the tongue, when I said 'ow' there, he had a further good old feel and said those dreaded words, 'You've got something there'. Oh my GOD never say that to a cancer patient! But I explained it was where they'd removed the very large ganglion (is that the English word? well if it's not, you'll have to translate), plus one of the points of attachment for the graft, so altogether it's a scarred area, and he was ok about that.

He had me have a blood-test, make sure everything is balanced ok, plus I have to do a 24-hour urine test plus blood test, make sure the kidneys are working ok. I have no qualms.

My physio is still working on me. When I first started going to see her, my throat went in a straight line from my chin to my noticeable, deep-pocket tracheo scar; it was hard and painful. My face was swollen. I looked pretty rubbish.

A few months on, my facial swelling has completely gone. I have a bit of a double chin which is still hard to the touch, which is still the tongue needing more work, but not much; and the right-hand side of the neck is stiff and painful to handle, where they cut it open to remove the glands; she is working on that and on my shoulder, which was painful before-hand so she's including it in the general work. My wrist, where the graft was taken, is flesh coloured and not very noticeable, although it will always be a slightly strange shape side-one, where they took the muscle; but she doesn't work on it much any more, it is more or less fine. Sure, it is still numb up the side of the thumb, and there is the strange hyper-sensitive nodule in the middle of it, and I have developed a cyst which makes long-term keyboard use rather uncomfortable - but they are minor discomforts and most of the time I don't notice it. In fact the only time I really notice it is if I go to a concert and applaud a lot - that hurts!

I had a minor op to have the tracheo scar sorted: it had a lot of adhesions that were affecting my swallowing, and it was ugly as sin. Now you can't see it, really, you would have to point it out to people!

The only scar I don't like is the port-a-cath one. That is still painful - physio gives it a bash from time to time - and ugly, although small; I may very well ask for it to be laser-ed too, some point in the future.

What else, to make this complete... my eating is fine. I avoid meat, as it's chewy and dry; although I will eat roast chicken if there's plenty of gravy, and pasta sauces with ham or chicken in; and with winter coming, could manage stews fine. But a lot of fish instead. I have developed an insatiable sweet-tooth - I still eat a Magnum a day, and usually at least one Danette. I have rediscovered chocolate, although it is no longer as addictively yummy as it was. I still don't eat bread, or anything that sucks up the saliva or coats the mouth. One always has to be a bit careful, there is the possibility of choking, but it doesn't happen much. My weight is fine, in fact I've put a kilo on in the last month and want to lose it again!

That's it really. I am still working part time from home, because I still have too many therapies (speech therapy, physio) plus check ups to make it sensible to rush back and forth from office to them; and because the French health service is very, very careful about putting people back to work. I was 'inspected' by the health service doctor recently, she was very sweet, said she gave me the right to continue on part time till April if I need it. And she told me to go and see a psychologist if I need it. (They have psychologists here, who are psychiatrists, but they have not done the full medical training; psychiatrists are medical doctors who have then done psychology).

I don't know. I am very up and down. I recognise that I am not emotionally stable and not always in a very good place. But to be honest, I think not working and not seeing people is one of the reasons I get down. My sense of self-worth is pretty low, and I am isolated. I should be feeling really pleased with myself about work - I managed to have a new role invented, wrote the job description, and got the job: how cool is that? But it's all part of my not getting recognition and feeling I'm in a dead-end job: and I'm not as young as I was, by any means. The bloke they brought in to 'cover' for me, was taken on at a grade above me - the grade up I should have had, but I wasn't there; and my new role was not announced as a managerial role, my manager did not use the magic 'manager' word in the announcement. And I'm still on the same grade I was nearly 3 years ago. Pretty lowly. I find that very depressing. I find thinking about retirement very depressing! But there - I hide my head in the sand and think about it... tomorrow.

Right now, have to fly to the physio.

Byeeeeeeeeeeeeeeeeeeeeeeeee.

'bout time too eh

2010-09-21T00:05:00.000+02:00

I decided, it really really is time I updated this. I strongly remember that one of the things that most frustrated and upset me when I was desperate and seeking info. was the fact that the other tonsil cancer blogs I found just - stopped. As soon as they got well, or at least considerably better, total silence. And there am I, doing the same thing.

Well, it is understandable, you know. Frankly, you want to stop thinking of yourself as someone with cancer. Once you feel better, you want to put it all behind you as much as possible. You nevertheless remain scared: it is still early days, and it takes 5 years at least cancer-free before anyone would start saying things like 'cured'. Frankly, one doesn't like to think about that bit.

Meanwhile - I am well. The cut off my tummy tube on August 13th. I had a thrombosis on the portacath at some oint, and had to have daily injections for 4 months, which gave me bruises all over my tummy and thighs, very fetching; but they finished and August, and now - I have NO MORE cancer related treatments! Check ups and stuff, of course, yes.

I can eat almost normally. Have started being able to cope with some spicy stuff. Have some saliva issues, not much. Don't eat meat much, too dry and chewy, don't touch bread or bready-type things. Still have physio and speech therapy. Face/neck are much less swollen, really just a boring double chin left. They did a BRILL job on my tracheo scar, you can't see it at ALL now. My wrist/arm is (are?) pretty good - oh except that I fell over and saved myself on my outstretched left arm the other day and hurt it all the way up. Fainted and got taken off to hospital where they checked EVERYTHING - I was in emergency for 12 hours. So - you'll be pleased to know I'm not epileptic, I have a brilliantly healthy heart, my brain scan is normal, and all round there is nothing wrong with me; I have a slightly displaced shoulder, bruised wrist area and mildly fractured elbow. Lot of fuss about nothing (OK yes it does hurt but hey).

I am working part time, from home. This is great - if I want to I work in bed, typing away tippy-tappy, on eht phone, don't have to get dressed or anything, slob about all I want and still work just as hard. Sometimes I get tired and just stop, go to sleep if I want to, etc. Mostly, it's not a prob., I am able to be lazy. Of course, I have to fit in the therapies etc.

I feel... unused, dissatisfied, so I just bought a load of books on linguistics and have started reading that. Want to stretch my mind out.

So - there! Anyone else who I don't know, who is scared and looking for hope - there is TONS of hope! modern surgery is fantastic, but also so are the improvements in radiotherapy techniques. They are able to target the areas for treatment very minutely, rather than the broad zapping they used to do. That is why I do not have massive saliva problems - they came to realise that the major saliva glands, although they produce the quantity, are not the ones that provide the quality; it's all the little tiny saliva glands, which are dotted all over the mouth area, which make the saliva other than just viscous yuk. So, they are careful to target only the necessary areas to treat, so as to cause as little damage to the general glands as possible; that way, you can, when recovered, regain both quantity and quality.

Equally, although I am still having physio and speech therapy, the long-standing physical effects are very small. Yes, my skin has aged. I'm pissed off about that, OK; before I was ill, I looked really good for 50... now, I have a bit of a chicken neck, and I have creases around my mouth. And my chin. Well... I look my age, I guess. Good grief, that could be worse! (but vanity, vanity is a dire thing). Yes, long-term my teeth will probably suffer, although I am trying to be good about brushing them lots and soaking them in high-fluoride every night (whilst still in my mouth I might add ha ha). I lost 10 kg overall (something over 20lbs) and that is a GOOD thing, now I am officially no longer anorexic. In fact, I've started putting it back on again and I may have to forgo my puddings and Magnums! Damn!

Long-term change of life - I don't smoke and I drink very little.

It is important to realise, though, that it takes a long time to recover properly. The surgery, the radiation, the chemo, and of course the illness itself - it all takes a lot of energy to recover from. I feel indignant from time to time that my doctors still want me to be on part time; but then again, any little thing unbalances me. After I fell over, I was still getting tearful for no reason, a week later. I have to admit I'm still a bit pathetic even if most of the time I don't feel like I am! So - you have to be nice to yourself. You have been though major surgery, intensive poisoning, and emotional and psychological trauma. You're allowed to be a bit pathetic for a while, eh.

So - THANK YOU, thank you, to all those who supported me through this time, and courage, courage to anyone who has this problem. You will get through it. Feel free to post here and let me know if you would like 'buddying'.

Well, it's been a while... GOOD news and somewhat less good news, and friends

2010-05-06T19:56:00.000+02:00

Hi all. I'm sorry I've been such a crappy blogger for so long! Frankly, it has all been because of low morale - I can say so now, because my morale has just taken a leap up - although shakily, despite the excellent news. I have had my control scan results and ALL CLEAR. Yay! I say morale is up shakily - well, it's been a tough few months and actually getting the results (that I've been refusing to be worried about, yeah right) is almost a shock - taking a while to sink in. Lionel has been so stressed, he almost had a funny turn. Perhaps we will stop arguing all the time now???? Well, wish us luck on that one!

The somewhat less good news is that I was hospitalised as an urgency last Thursday, because I did have a funny turn when I was at the physio's; I'd been gradually having more and more pain in my left neck/shoulder area, and I didn't want to moan about it - I thought it was just returning old neck/back probs - and I thought it was also that I'd just started my speech-therapy exercises again, with gusto, and had over done it. But since it was actually swelling up, next to my port-a-cath (the thing they bung the needles in instead of having to make holes in your arms all the time), all was obviously not happy. The pain by Thursday was actually quite unbearable - paracetamol worked but not for long enough. Turns out I have a thrombosis in the inner left jugular and the brachiochephalic vein - I think this means the clot is at the joining point, rather than that I have 2 clots.

I will say - over and above the really bad pain, tears and nurses having to pat my hand etc. - that this news really shot my moral to pieces. It's just bad luck, of course, a secondary effect due to the foreign body (port-a-cath), but I was aiming to get back to work part-time this month, starting to feel fairly normal, more energy etc. This just made it all plummet; and I am signed off work for another month. The good news today has perked me up again, but I'm very worried about work now - their patience I think has worn thin, my usefulness and how long they are willing to hang on to create the new setup within which I was to have a new, better, more interesting position, all are up in the air. Of course, I will have a job to go back to - they can't legally not keep my place open - but my 'career' is probably deeply scuppered. Should I care so much about that? Well, if I were someone who was of the ilk to be self-employed and to create their own lifestyle and income etc., no - but I'm an inveterate employee, apparently, and I'm 50, and having had a serious illness, I'm considerably concerned to ensure a good pension etc etc - so hell, yes, I'm worried! I do NOT want to carry on earning half what I should be, and bored bored bored.

Over and above all the health stuff - April was a busy month! Rachel came to stay and we had a great time - did lots of gardening (of the 'hack it down and burn it' sort), which was wonderful (and I am sooooooo grateful to her!); and took her to see the sights at St Guillème le Desert and of course Montp itself. She had a great time too (well, she SAID she did anyway) and was really really lovely, cooking and helping in all sorts of ways no guest should have to, but with me getting knackered, I was incredibly grateful for. The nice thing about the friendship with Rachel (who I've known since I was 9 or 10) is that we don't spend our time reminiscing, even though we only see each other every few years; we just get on with life now, and gossip like hell. Hi Rach!

On the day Rachel left, we flew to Marrakesh, which was our 'it's all getting better' present. We were supposed to be there for a week, but our stay got unintentionally extended by the dreaded volcanic cloud - and our purses were emptied considerably more than we had expected! We were very lucky, on flying out, to meet a colleague of Lionel's at the airport, who was a native of Marrakesh, going back to visit his family. He took us around the town, the souk, the medina - what a maze!!!! - and we were very lucky indeed to have a local who was genuinely showing us round out of friendship and not for money. On one day, his eldest brother drove us all to Esouira, a seaside town, where we saw real sea, none of that calm blue Mediterranean lark - SERIOUS grey-green big waves stuff! It made me feel extremely invigorated. He also got us very, very good prices on buying the throws I wanted, and some lovely shirts for L. This was a 3 hour drive each way, of course we paid the petrol and bought lunch, but it was SO sweet of his brother! Who is apparently a lieutenant colonel in the army, so probably a Good Person to have as a friend over there.

Also, Catherine, the cousin of my oldest friend Michael (I should say, longest standing friend...), lives in Marrakesh - and I've known her for years, too, although never close, I am considered part of the family; she even said I have the air of an Ackroyd! I was terribly chuffed. So we had dinner with her 2 or 3 times.

Then, having managed to get back via Paris (still had to go to Marseille to pick the car up from the airport and drive back to Montp), a few days later Spencer came to stay, which was a wonderful pleasure! Unfortunately, by this time I was really starting to suffer with the thrombosis - in fact, we picked Spence up from the airport on Wednesday late afternoon, I had my funny turn on Thursday morning and was in hospital for the afternoon. Or did he appear on Tuesday? I'm not quite sure on the timings - anyway, because Spence is highly resourceful, he decided to buy a bike and cycle round nice things to see. Isabelle, Lionel's amazing ex-wife, took him to buy the bike, whilst taking me to hospital - yes it's all coming back - and went home to get him a back pack, make him a packed lunch, several maps, then she drove him into a nice village in the country side and let him get on with it. He apparently thoroughly enjoyed himself, thank heavens. He managed to come and see me in the evening, and the next morning, then he had to go home! Not QUITE the chatty visit we had intended, but really, he is a delight. Hi Spence!

Anyone else who wants to come visit a poor bored convalescent, May is a good month to do it.

A wee update

2010-04-08T23:20:00.000+02:00

Hello all - no news is good news. I have been taking only one pack of goo a night recently, as my eating has improved considerably (in quantity if not in variation... minced beef and tatties; spag bol; meat stews; not much else). I am expecting to go back to work part time from the start of May! which is great, or will be, if I can work from home; not so good if they want me in the office, the extra travelling would be tiring (although it's only 30-45 mins); and I am not really comfortable spending that long in non-friendly public. But I'm sure we can sort it.

L and I go to Marrakesh for a week from Monday. Scary and good - I won't be able to take my goo pump etc with me, so I will HAVE to cope with eating normally; but we both really need a holiday, so yay. I have a friend there (well now... the cousin of my godmother's youngest son... he being my oldest friend, and she being someone I have met at various times over the years); she organises tours and runs a Riad. Sadly I didn't know she ran a Riad when we booked ours, but hey ho. We will go and take tea, if nothing else!

I just spent a few days with the folks, it was great, although I do worry so about them - pa doesn't walk more than a few feet or not if he can help it, and ma is worse, although she tries hard. She is so frustrated, and gets very depressed sometimes with it. Still, it was great seeing them, and I took her out shopping, borrowing a wheelchair from a local place. OK, it knackered me lol - I had to go to sleep a lot that evening and the next day - but it was really great. Also had lunch at Russ's, and a lovely time playing Pat at Boggle in the sun. So good for the soul, sitting in the sun, chatting, and listening to the birds and no other noise at all.

Back briefly to effects of all the treatment. At the moment, there is a straight line from the base of my chin to about where my adam's apple would be. I am hideous in profile. Poor Nils was trying to take a decent pic of me when I popped in for drinkies with Lionel - she had to truc the photos, I'm afraid! Fantastic pic of L, though. And lovely to see her, Steve, Claudio and Kat - I popped in to Kat's for a coffee and good old chat before I went home, too. Saw round her house - wow. There is a lot to do... it's a big place! Kat - start at the top! The roof is the principle thing, I don't think just getting part of it done will do, or at least you need to do more than just replace that beam. Money, I know, money...

Tomorrow Rachel is coming to stay for a few days, which is wonderful! it was going to be today, but I didn't read my mails and she didn't have the right phone number for me... so what with the train strike and her not hearing from me (would probably have been sensible if I'd contacted her to check all was ok...), she is still at her father's, done the south coast somewhere. But she'll be leaping on a train tomorrow morning. I meanwhile have appointment with the nutritionist tomorrow - I hope she will be pleased with me having taken the initiative myself to reduce to 1 pack, and won't be too worried that I've lost 1 kilo - or maybe less. I don't think so... Then later the speech therapist. Saw the physio today, god that hurts, but it makes such a difference.... my hideous chin/neck is gradually softening out and the swelling should gradually reduce. She has told me to click my tongue a lot - it makes the base of the tongue work, and affects the swollen area. So I go around making horsey noises now whenever I think of it. L loves this - he makes them too, but in a sort of gee up way. Grrrrr.

Booooooorrrrrrrrrrrrrrrrred

2010-03-11T20:48:00.001+01:00

Really getting very bored... but I guess that's good news - I feel well enough to get bored!

I'm now eating 2 portions of baby food a day (since yesterday). This is good, although not quite good enough as it is only about 320 calories and I should be eating 500 to make up the daily intake (plus 2 goo bags overnight). But, this is definite progress, and I am feeling much more upbeat and positive (if bored!) than I was; I have energy, I don't have to sleep in the afternoon or evening every day; and I am taking exercise, L and I at least going to the village every day (OK except today), also been into town and walked round again, and didn't go to sleep when I got home, yesterday.

But oh god I'm boooooooooooooored. Crochet is all very well, but... OK I didn't expect my enthusiasm to last all that long... but I'll keep on it. Have to do something! Today I am on page 50 of the lolcatz site. It tells me to paste some code on my blog to link to it, but I'm not sure where - I'll shove it in here for the moment.

see more Lolcats and funny pictures

It is really funny, and if the cats aren't your thing, there are plenty of other sections to give you silly giggles. Or contribute, if you wish - I have contributed some under the name mungolina, I don't think they're in the list of public ones I don't know how to get them there, but you can find my bit and go see them if you feel so inclined.

Oh I'm also drinking more and more coke - it really is helpful for the saliva/blocked throat/choking probs! plus of course it is giving me some sugar (nursey said it's good for me to get some sugar because it gives a pleasurable boost, so there) and it is giving me calories. I'm on my 2nd can today - and I never used to touch the stuff!

I have now also started treating my teeth - the zapping drains them of fluoride or of whatever they contain naturally, so now I have some high-fluoride content tooth paste, and I 'soak' my teeth in it for about 20 mins a day, I have some plastic moulds I put the stuff in and place over my teeth; also of course brushing them with it. I HATE doing it - it gets in the mouth and I have to concentrate really really hard not to heave. I try to get busy doing something else.But I do not want my teeth to be full of black holes in 4 years time, and that is what will happen if I don't care for them; so I do, and I brush them carefully too - havn't been back to the paradontologist yet, apparently that word doesn't exist in English but tough - will be going back to see him when I feel better able to sit with my mouth open for x time.

Oh - L just came home and said someone called for him at work today to offer him a temporary place as head of a collège about 10km from here. He was on a course, so his boss answered for him (he's deputy head), which is really not right, saying he didn't have his driving licence so really he couldn't do it - which was deeply mean of her and not correct at all, she should have said he wasn't there and to talk with him tomorrow. She's my friend, but it's still not right. Anyway L is both pissed off with her and wavering wildly between negative and positive about it - he started by saying he wasn't interested because it was in the middle of nowhere, then I looked up where it was - he hadn't had a chance to look into it at all - it's 20 mins drive away (although probably an hour by public transport) - I supported him at once and said I think he should do it, because it's good experience for his CV, and I offered to drive him - being so bored n all. If it's really worth it, then rent a room somewhere near. Whatever - he is really pissed off with Noelle (the chef) though - she does do things she really shouldn't that are just unprofessional. She could have just given his mobile number. He is ranting and quite right too. Damn it. And he's not sure he wants to do it partly because it would mean he would be in conflict with his boss when he went back - partly fear, I'm sure - partly indolence I'm also sure - I mean, it is not an easy thing to take on a school, in a role you havn't done before - without a deputy, either, there is no deputy there - and half way through the year - it's really quite daunting; but I think it would be really really good for his CV, and it may even mean he could twist the rules afterwards and they'd let him be head of a lycée without officially holding a head of a collège role first - they do twist the rules as they want when it suits them, frankly; but if you want to be head of a lycée, you have to have been head of a collège first. He's not that happy about being in the front line, he'd probably be ok just being a lycée deputy head anyway, but I still think he should do it.

More snowwwww and holidays

2010-03-08T12:49:00.000+01:00

We had about 20 cms overnight! very pretty, not so good for trying to get to my hospital appointment this morning, but really only getting in and out of our little parking place was hard. Surgeon was very happy with it all, gave me prescriptions for kiné (physio) and orthophoniste - speech therapist - and a fluoride product to put in the gum shields I have had done, I have to wear that for 10 minutes every day forever. He said I should start thinking about going back to work (but was sort of only joshing me really, he agreed that May time is about right). He just wanted to make sure I wasn't revelling in the not-working being-sick bit too much, and realised that real life will start again soon. Thank GOD for that, but I still intend to have some holiday first! I want to go to the UK to see all my lovely friends and family there. I want to go on a relaxing beach holiday with L (with a bit of sight seeing). And I really want to go somewhere exotic with Michael, too - but frankly I'm not sure I can fit all that in and include recuperating! And I want people to come and visit here, because Montpellier is a great place to wander around, and there are things to visit around here etc., and why should I do all the travelling, eh? So far I have one taker around the 16th April and I really look forward to it! But I might combine things - go down to Espéraza and get friends to come and stay there, since there are 2 spare rooms. Then I can see folks, bro etc. and Espé friends, and UK friends, all at the same time; and L can join me weekends if he wants, if I'm away over term time.

Oh, but I have to be careful about 16th April, I think L said that the Easter hols are the 2nd 2 weeks of April, because they've just gone back from half term, and they have 6 - 8 weeks to do before next hols. Need to get exact dates!!

Rest and crochet

2010-03-08T12:40:00.000+01:00

I have been tasked with my blog going quiet - true, true... it is a trifle hard to find new amusing anecdotes or thoughts for you all. I am in any case now crochet queen, having finally received my hooks (I have been impatiently waiting for them from China, bamboo, having received yarn and books already. Well, SOME of the massive quantities of yarn I've bought, anyway - 2 deliverers have not yet delivered, although both were supposed to be Colissimo. I just can't be bothered to chase... although I spent a ridiculous amount of money on it all, and really must!). Anyway, I'm thoroughly enjoying it, havn't been online at all for a week, just crotcheting... first time in years and years! At the moment I am working on a throw for sofa/possibly a bedspread, in lots of different patterns in squares - no I don't mean all granny squares, although there are a few different ones of them; I just mean different patterns, in a square shape. It is quite amazing what you can do with crochet, rivals knitting for cable stitches etc. - but they are very greedy in yarn, I must say. Hence, I bought a bulk load of white cotton (ebay), and discover that it was cheap because it is bad quality - not breaking, but so poorly spun that the threads just don't stay together a lot of the time, which is bad both for the aesthetics and for the poor crotcheter.

I am now taking 2 goo packs a night, on special dual-tubes so I don't have to wake up and switch it over, and I eat in the daytime, or try to. Baby food, at the moment. Everything is so yukky, sticky, nasty... just everything. I drink coke, which I never normally touch, because I have discovered it is good for my saliva issues. They are mutating - I now vary between hyper-salivation (still all stringy and yuk) and none at all. First thing in the morning is really difficult - I wake with a totally dry mouth and throat (although it's good for the laundry, at least I'm not drooling all over the pillow cases any more!), and have to clear the mucus that's gathered in the back of my throat overnight. That is the dangerous bit - because I can't clear my throat normally, coughing and trying to clear it makes me retch; and this morning I lost all my overnight goo. That is a shame but it is the first time I have vomited for a while, so there is definite progress. Mind you, when I weighed myself yesterday I was just under 62kg, so I have lost a little bit more. But the loss has definitely been slowed right down, and I no longer feel weak and pathetic.

Because I did feel very very weak and pathetic. Standing up, my legs would shake. And I got depressed and sorry for myself and cried a fair amount. None of that is very conducive to blogging, I fear. However, I'm definitely getting my strength back - went into town with L on Saturday, and walked around for over 2 hours (came home and slept for over 3 hours...); we go for a little walk every day, generally just to the village and back, but it's enough to ensure my leg muscles are not withering away.

Crotchet of course is keeping my arm muscles in fine fettle :D

Feeling a little better

2010-02-25T09:40:00.000+01:00

Just this morning, I'm feeling a little better. I'm starting to manage the stringy mucous better, I think - I still get phlegm in my throat, and clearing it still makes me heave, but I'm controlling the heaving so I'm no longer actually sick. So yesterday I 'ate' about 200ml of goo, and tried to nibble various things none of which actually really worked, but overall I did get a few mouthfuls of nourishment down me. Am dehydrating a bit, I recognise, so syringing in water - that is no longer making me immediately drool like a hungry blood hound, or be sick, so I guess the liquid is actually being used by my body now, which is a relief. I still havn't dared to try cleaning my teeth again yet - that is on the list of things for this morning. I have never known a situation where I felt better not cleaning them, it is very strange. But I think my vomit-levels are less precarious and it should be safe if I'm careful.

You probably don't want to know all that, but I figure, what the hell, why shouldn't you join in.

I was going to book myself into hospital, I tried yesterday morning and the best they could (would) offer me was a bed for the weekend so I could have a bit of quiet - that's no good. None of the normal nursing/doctoring staff is there, and you get standard diet - an example of last time I was in for a weekend, a steak haché with rice, dry. That is no help when you have a fragile appetite and are there to get yourself bolstered up. So I'm going to see my doctor today, she can prescribe stronger anti-nausea things - why didn't I think of that before? These medications we take are so carefully controlled, you have to have special prescription forms for them, and they are handed out in very small quantities; I had in my mind that only the hospitals could prescribe them. But no, apparently a normal doctor can... I'm a bit slow. Anyway - realising that the hospital wasn't there to help me was actually salutary, I think. Once the treatment is over, they no longer want you - you have to learn to cope on your own. So, I got dressed and took Lionel into town. I didn't overdo it by any means - sat down on the new Lips couches they've installed while Lionel queued, things like that. Did one end of the shopping centre to the other, one shop (food). Went home, slept for several hours. That is how weak I am, it's pathetic. The day before - or was it two days? it was briefly nice, so we walked slowly into the village, which was fine; but I had real trouble walking home again (all uphill), and was having to hold onto things. My legs are just so weak.

So - resolution is, I have to make sure I do exercise, a little every day. I recognise I was allowing myself to get into a 'poor me invalid' state, which is no good for anyone. Right now I'm in bed - it's still early - and I have 2 cats keeping me company, which is lovely. They have been getting perturbed recently by me illness, too, and it is good to see them more relaxed.

This is an incoherent post, but I just can't be bothered to put it into coherence.

Bright and cheerful eh

2010-02-21T08:13:00.000+01:00

Sooooo - all treatments done. Yes, I should be bright and cheerful. But I've been putting off updating this, because firstly when I got back from chemo, I had a really bad time - I thought I had a cold on top of the post-chemo nausea - and lost 2 or 3 kg; I'm back on the food now, but I'm having dreadful problems with hyper-salivation (and the saliva is deformed, stringy, thick, have to spit it) and thick choking phlegm. Absolutely disgusting and ok I won't say any more about it, other than absolutely disgusting, a known side-effect of radio-therapy mouth/neck treatments and oh god when will it stop.

I'm feeling really depressed and tearful this morning. Just gets you sometimes. It's because my beloved Debs has a swollen lymph node in her neck - we've always been frighteningly in synch in our lives - and I'm really pushing her to go to an ENT person now, don't wait for months of anti-biotics and dentists and ventilator stuff and ignoring it, like I did. Go early, be reassured and/or treated early.

Because this cancer's survival statistics are not good, however good the treatment I am getting may be (and it is), there is still only a 50% 5 year survival rate. One of the principle reasons is because these cancers are hard to identify, and get diagnosed late (like mine, stage 4 - just I'm lucky that it had only spread to the tongue, not to any other parts of the body).

This is a hideous experience, it is depressing, it is a constant battle and sometimes you don't feel able to laugh and be cheery about it. But I do recognise that I am very, very lucky compared to many people. I am not disfigured. I still have my tongue. I can talk. I will be able to eat again. And I do believe my doctors when they say my treatment is a cure, not just a temporary palliative. But hell, it is hard to be chirpy all the time.

Comments - not working??

2010-02-07T10:26:00.002+01:00

Janeywoo tried to post a comment the other day, and it wouldn't - if you can't, please feel free to mail me, as Kat and Janey did. I appreciate the communication! Thank you.

Breakfast in bed

2010-02-07T10:25:00.000+01:00

I'm going to try to piece together the last few hours of my life; a fairly typical early morning here. Some of it gets graphic, I guess - you can avoid those bits.

7.30, wake up call, with temperature and blood pressure checks. 7.45, breakfast appears - a piece of cheese and a tilleul de tisane (lime infusion?). Immediately after, or possibly before, some time around then, nurse appears with day's medication and nutrition pack, and sets it all up for me. I discuss chamomile tisane with her, because the hospital dentist said it's good for mucite (inflammation of the mucal membrane).

Because I presently have an abominable mucite in my mouth and throat, eating or drinking is not possible without help (yeah great - had JUST got back to normal-ish eating capacity, really looking forward to my meal, when wallop, intense pain cuts in trying to swallow; this was from yesterday lunch time. God has a really bad sense of humour). And in any case, when I wake up my mouth is dry as the bottom of a clean parrot cage, since the saliva-circuit no longer functions properly. So, before taking advantage of breakfast, I have some health routines to go through.

- Pills in water to be disolving while do rest - 5 pills, seems such a lot
- Anti-constipation stuff ditto
- Mouth wash - 50ml with a mix of bicarb of soda 1.4%, aspirin and xylocaine, anasthetic for mouth. Swill and gargle. Gargling is an art, since I have to be careful not to choke, and also not to gag. More on this issue in a minute.
- 2 teaspoons of xylocaine gel, this increases the mouth anasthetic and above all anaesthetises the throat; plus because it's a gel, it sticks and stays while you eat/drink.
- Cream on thigh and wrist graft scars to help them heal
- Cream on face and neck to help the affects from the radiotherapy

Really doesn't sound much, does it? You'd be amazed how long it all takes.

Panick moment when I leave the bathroom, standing upright - you can start avoiding this paragraph now if you like. I find that I have a real issue with something (either gel or mucas) trying to go down the wrong way. Since the op., I have lost the 'hawk' reflex in the 'hawk and spit' bit. I cannot clear mucas or food that is at the back of my throat, you know, just where it runs when you have a cold; where the nose joins the throat. Being unable to hawk, but really needing to clear the threat to prevent choking, my body's reaction is to gag. I also try taking tiny tiny sips of water, to swallow and encourage whatever it is to go down the right way - a somewhat risky action, since it is extremely easy to choke on water; the anaesthetised throat at this point is unhelpful, because I am not really in touch with what's going on. But I am really concerned not to let the gagging become actual vomiting, I've just spent a week getting my system back to normal non-vomit state.

This takes several unpleasant minutes to clear, but I sort it.

Back to the pills and anti-constipation stuff. Manage to tip half the anti-constipation stuff over my bed - first time I've done that. Very irritating, rather wet. Still, have a syringe-full, that's a start.

It is now 8.15. My tisane is cold, but it doesn't matter, I am so used to eating and drinking cold things now. I dig in to my cheese - not literally, of course; it is plastic cheese in a plastic pack, so first of all I battle with actually getting access to it at all. It is a sort of mimolette. At 8.30, they come to take the tray away, but I hang on to my cup of tisane, which I won't actually finish until 9.00; at some point I wake up with it in my lap, not tipped over but my tendency to fall asleep unexpectedly can have consequences!

At last I have finished it, so I finally plug myself into my goo machine, and go in quest of dry sheets. The lovely ladies are just in the corridor, and agree to do my bed immediately, provided I pay them weekend overtime rates :). They also let me know that they will have chamomile tisane available as of lunch time, which is excellent.

I pop down to the nurse's office to see if she thinks I should take another pack of anti-constipation stuff, because I'd lost half the dose, she agrees. Back to my room - oh, all this popping around is a big adventure for me, generally, because I am attached to drips and the goo, dragging my stand around with me, I honestly don't move much. The goo pump has a certain battery life, but frankly it is ante-deluvian technology (there's this little fly-wheel on the outside that sends the dose through the tube), and it is big and lumpy and generally a pain to trundle around with. My one at home is dinky. So - back to my room, and quickly do my careful tooth hygiene before the ladies have finished changing the bed, so they can get in and clean the bathroom. Get onto the bed to be out of their way, enjoying their good-natured banter. They fetch me the hair-dryer so I can do my full toilette including hair when they've gone.

Re-do the additional dose of anti-constipation stuff, without accident, and contemplate where to get more water; I am on my pre-chemo special protocol, where I have to take 3 packs of experimental powder a day; the powder is to assist in protecting the mouth/throat from the worst of the radiation affects, and I think it is doing a damn good job, or I'm just lucky. I take them mid-morning, mid-afternoon and after dinner; because I don't have a food processor handy here, I have to tip the packet of extremely greasy powder into half a bottle of water and do a cocktail mix as best I can; I generally don't have too much left over in lumps, but certainly the consistency of the powder really needs some work before they commercialise this product!

Decide to write this up - offline initially, to save my precious online time! (I'm on a key, buy hours up front - I managed to use 6 out of 8 hours yesterday!!). It is now 10.16. Amazing, where did my morning go???

As Kat said... Nearly there!

2010-02-05T08:12:00.000+01:00

Hi, all, first post for a while, sorry. As Kat just mailed me (and I've nabbed a lump out of my reply to her to save typing lol), really nearly there - next week is my last week of radiation therapy, and Thursday I have my last 3 days chemo.

I've been not too good since my last chemo, and have actually spent this week in hospital, because my nutrition had basically stopped and I was constantly nauseous. It's NICE being looked after!! Someone is going to come and wash my back in a while, and then they are going to wash my hair (can't shower due to the usual paraphernalia of tubes attached lol). They have got me back on track-ish now, I am on 24 hour non-stop goo at a very very slow rate (40ml/hour); and I only occasionally need anti-sick stuff, usually at about 4.30 a.m., at least it gives the night nurse something to do . I need to get them to weigh me today, I lost 2kg last week, and I will have lost more this week I'm sure, I've only been managing about 850 cals a day tops. This means that I am eating into muscle, rather than fat, because that's what the body does when it is using its own resources, sounds pretty stupid to me but no doubt there are good reasons. However, it is not at all desirable, and takes a long time to get back even a small loss, so they are really keen for me to stay until they feel I'm 'sorted'.

I think I probably am now, had a few sessions with a psychologist, too, and had my breakthrough as being 'I need to have the right to be weak'. Because it's hard, all this positive thinking malarky. Be strong, keep your chin up, must fight it, blah blah... there is quite a keen debate going on amongst cancer sufferers about the bad side of positive thinking, which implies that if you are ill, if you don't beat the cancer, then it is your fault. I didn't feel like that at all at first, but I must admit I do now. You can't be positive all the time, you can't put on a brave face all the time, or you end up doing what I did - the day before I was hospitalised, I got all dressed up and looked 'splendid', a friend said, I did some gardening, and went for a nice long walk (about an hour??) with my friends, in the lovely sun. No-one had any idea things were not hunky-dory. But I knew they weren't. And the next day, the doctor and the nutritionist both recommended I go home, pack a bag, and come straight back for a stay, so I did.

Ugh. English Breakfast tea, no milk, made with luke warm water. Oh well. At least I can swallow it.

Beans

2010-01-24T10:19:00.000+01:00

The chemo is being unpleasant this time, trying to escape back out of all orifices. When I said I felt sick, one of the nurses brightly said 'Shall I get you some beans?'

Beans? Beans?? What is this, some new secret weapon against vomiting?

No no - all was revealed in an instant when she returned with a small pile of those pressed paper vomit dishes - which are indeed bean-shaped. The French rarely do nice things like that with their language, but occasionally they delight me.

Nilla - I can't post a comment on your blog at the moment for whatever reason, but - the bench is for sitting on. Obviously!

(There is a bench that has been placed on the roof of the station, in my parents' home town).

Choccccccciiieeeeees!

2010-01-23T18:44:00.001+01:00

Thank you lovely Janeywoo and Roger, for the splendid chocolates - just to make everyone else slaver, a high class hand made English choc selection. I will be keeping them for the non-cardboard days - wouldn't want to waste them on my current pathetic taste buds! Lionel suggested I give them to the staff here, but noooo - they are a pressie to ME - I will buy the nurses etc. their own pressie, when I come for my last session - last zapping on 12th Feb, and last chemo starts 12th Feb, ends 14th. This session is going splendidly, it was due on tuesday but they moved it to Thursday then waited a day for my blood count to go up a bit, so actual chemo was today. I only feel slight nausea when I move, otherwise it is fine so far. I drank an HP drink and will eat a creme caramel tonight - my goo packs are on ultra minimum drip, one lasting 24 hours, so supplementing a bit and anyway, as soon as I have a day without radiotherapy, my throat improves, so I want to try to keep the eating/drinking habit as much as I can.

Oops. Fell asleep again. I am doing that all the time at the moment - fell asleep whilst brushing my teeth this morning! that has to be a record!

I've just remembered something that may be real, may have been a dream - it was a while ago (or was it recent but I dreamt it was a while ago?) - anyway - some writer or another was describing how he wrote, and I was stunned at how he created a completely clean environment - mentally, emotionally, I mean. He made what seemed to me to be a total sterile field around his mind, wiping out all aspects of his personal life, his personal thoughts, and then creating his writing canvas. I have no idea who it was, nor if it was real, since I see this as a picture, like a short extract from a documentary, I actually see his environment being wiped... I remember it horrified and fascinated me; I could certainly never do that. But at the same time, I can imagiine it being a very fruitful way to work, if you can - becoming totally immersed in the world and personalities you create, not having anything else get in the way.

Wish I could remember if it was real or not.

To descend gently into Morpheus' arms...

2010-01-18T18:22:00.001+01:00

Dear Nils have answered your comment in the comments... :) and did I ever say thank you for the looooooverly handbag jewellery? it adorns my handbag, as it should!

So, having had a very bad weekend whimpering and crying, saw the doctor today and he said 'oh dear me yes you have a very bad mucosite here have this prescription for morphine patches, try one if it's not strong enough use two, and add this xylocaine to your mouthwash, it'll numb it'. Everyone was very surprised at my sudden nose dive, because they have all been really pleased at how upbeat and punchy I'd been till now; but nose dive it was. I'm relying on my hair growing back curly and an interesting colour.

At the moment I'm actually on paracetamol+ codeine mix, which I find makes my mind go very peculiar but the pain is much less, I no longer feel the need to burst into tears every 5 minutes, which is really nice. But since I'm likely to be totally out of it once I start the morphine, I thought I'd give you a quick update. Also chemo has been postponed till Thursday, bed problem (they had forgotten to put me in the schedule...); this probably messes up the experimental protocol I'm following but at least the drinks (placebo or not) are good in my present state, they sort of coat everything and make it easier to swallow. I officially gave up food on Friday, but seem to be gooing strong :)

The other thing I do at the moment is sleep.

What to say

2010-01-16T19:20:00.001+01:00

So, my blogging has been interrupted recently. That's basically because there is really nothing to say - life is tedious, and telling you about it is tedious. My principle concern is to keep my weight good - which I am, still stable at 67.5kg or so. But today very down - retired to bed at 7 in tears, headache, throat ache, swallow ache, arm ache, so so knackered and basically crappy. Been going downhill since Thursday. The right side of my face is swelling up, around the eye and upper cheek - I'm assured I don't get any rays there, so it is some sort of a side-effect and I'm hoping not a bad one; because I'm also having trouble with my nose (getting blocked and bleeding) which is one of the symptoms I had when the cancer was growing (only I didn't know that at the time). Trying to be good and do all my mouthwashes, a mix of bicarb of soda, aspirin, and some red stuff I don't remember the name of. I am now appreciating them, they do help with the dry mouth and pain and to clear the throat (I gargle too). But spitting really hurts. I mean, hurts like so I make mewing noises to myself. My hair is coming out - although they have assured me that with this treatment you don't lose it 'much' - looks pretty much to me! I'm not eating at all now, relying totally on goo, which I think is not a good thing. I wish he was the type to make me tempting little plates of things - cold things, because the smell of cooking has become anathema to me - to help me eat; although my taste buds have almost gone, I can still taste a bit of sweetness, but savoury is just cardboard.

So yes, I'm feeling really down, and when I want to cry Lionel runs away (literally). I want my mummy.

OK I'm safe and apologies to them :)

2010-01-07T10:01:00.000+01:00

Actually, this is my equivalent in another part of the company. My manager just mailed me to smooth my ruffled feathers. In fact, it's great because, as I just pointed out to him, I can now use that advertised job as major fuel in my 'promote Sian and give her loads more money' campaign when I get back!

Three cheers for everything!

I'm bloody FURIOUS!

2010-01-07T09:01:00.001+01:00

I found, first in the list of jobs proposed on an 'executive' job board (because we all like to have a look from time to time), what is actually a definition of the job I have been doing for the past x time, but defined at the level that I have been saying I should be at - and paid very considerably more than me, believe me. It's MY job! I MADE it! and I'd been battling and battling to get recognition - and was told I'm on the list for this year's rounds (that's March time) - but since this is advertised on a public job board, they are obviously not willing to wait; which I understand, of course, from their point of view, but I just think this means that when I go back, I'll be right back down the bottom of the pile again, and have to re-do all my work to 'prove myself'.

I took such a career dive to come here - and such a financial dive - and no, I'm no longer a spring chicken; frankly, getting some more money in so I can save is a priority for me, my pension prospects are also shot to hell; but work round here is fairly scarce; I don't believe I can thumb my nose at Dell. Certainly not while I'm off sick on full pay which let's face it IS fantastic. Even though I think my full pay should be some 20K higher than it actually is ;)

Anyway, mailed my manager (who is not communicative, maybe because he's feeling embarrassed about the realities of commercial life having to stomp all over my career prospects) - asked if I can be considered for the role and take it on when I come back because it's not that long now... (well we don't know, of course, but the estimation is Easter). Must say, that is a serious encouragement to me to get better soon!

Oh - on the plus side - I doubt very much if, had I still been there, my actual role would have been as clearly defined and recognised - and as well rewarded - on an internal promotion basis; so in fact, if I can swing it, it might even work in my favour... who knows...

What a GOOD day!

2010-01-06T23:39:00.000+01:00

Well, the morning was just the same as usual - lazy lol. But it was a beautiful sunny day, I felt all excited and positive because of the lovely sunshine, gave the bedroom a good airing (even though it was cooooold) and thought quite hard about actually doing some gentle pruning. But mostly I thought, great, it's Wednesday, Lionel will be home at lunch time and free for the afternoon, we'll go into town together in the lovely sunshine.

L did have the presence of mind when he got back and I said yay, let's go to town, to ask how we were going to fit my treatment in... bum. Had forgotten that detail - I'm so concentrated on nothing! So instead, L sorted out getting the domestic help going again (we should be up and running for the week after next) and we went out me driving, did the treatment (it doesn't take long to get zapped) and then into town, we were there for 4, and the first day of the SALES, yay!

I had a good sensible bash in what I believe is the Redoute outlet shop - 3 organic cotton long sleeved low necked t-shirts and 4 organic low necked cotton jumpers - cotton only is recommended against damaged skin; so these are perfect for daily wear protecting my wrist and not rubbing my neck (the graft place is healing only slowly and is quite sore); plus a cute little soft wool number in apricot, that will be nice in spring time. And once I'd picked all that lot up, Lionel insisted on paying for it - what a sweety. He loves buying me stuff :)

Then I found a coat, well, a lovely warm cuddly big baggy thing with a fake fur ruff round the hood, you know the sort of thing, it is comfy and really warm and a little bit stylish, and was only 25 Euros! So chuffed with that, I concentrated on looking for brown boots and found a pair in the last shop before we dropped (oh L bought himself some jimjams inbetween, and we went to La Comédie and had a hot choccy and generally toured a bit). The boots are actually exactly the same as a pair I bought last year but last year they were grey suede, this year brown leather - and just because they saw me coming, all the colours except brown were marked down to 84 Euros, but brown was 103. Damn - oh well - the coat balances it out! Anyway, I'm really pleased - the are the sort that goes a bit baggy on the leg, soft, and have a heel that looks nice but isn't too high, so still comfy and wearable. They are the sort of thing that just adds a bit of femininity to a very basic getup. Turns from frump to - well, reasonable lol.

Then this evening they had Slumdog Millionaire on telly - I was able to watch it in English, L put the French subtitles on for him - just loved those accents, and a favorite film that I had been wanting to see again, manages to turn poverty and misery into a joyous occasion. Followed by some Bollywood and a fascinating look at cinema in India - currently a documentary on Mollywood, Superman films being done by a small producer within villages, there is one cinema in Malegao (?), the area he works in, and he uses the local villagers in his films etc. but they still all pay their 20 rupees to go to see them - they are fantastic, he does his films in 3 months, his latest cost 100000 rupees, and he doesn't want to go and work with the big film companies, he has everything he needs there. And just now, there was a look at all the different types of cinema you can find - the cleverest was a box on wheels, with a manual project outside; the box had 26 viewing holes cut in it at different heights, which had little flaps that the owner controlled lifting. The inside of the box had the white projecter screen in it and the 26 holes accomodate the eyes of up to 26 people, generally children. The films they show cost 1 or 2 rupees a go, so the children can get a treat really cheap. The man turning the handle listens to the soundtrack to make sure he's going at the right speed. Oh, and lots of other fascinating stuff, so many people make their lives through film, but not at all the big industry that we know, there are so many people who love and live by their own home-run version of it... old hand-cranked films in bad condition... it doens't matter. It is magic.

An incident from the past

2010-01-05T23:25:00.000+01:00

This is another incident I was telling frankee about when I was in hospital, and I don't believe I put it in here at all - again, it's in chat format, and I'm NOT going through the hell of reformatting it all, so it is slightly harder to read I expect. But it was so funny!

moptop (17/11/2009 20:49:43): so saw my folks and my brother and Pat (his wife) and a surprise visit from David (L's idiot son) who is quite fond of me realy, and L of course
moptop (17/11/2009 20:49:47): so busy day
frankee F (17/11/2009 20:50:08): awwwww thats good! im glad you're getting those visits. that will help alot
moptop (17/11/2009 20:50:44): I can pick BOTH my nostrils now! Yay for no tube!
frankee F (17/11/2009 20:50:50): LOL
frankee F (17/11/2009 20:50:53): YAY!
frankee F (17/11/2009 20:50:57): youre so funny!
moptop (17/11/2009 20:51:16): LOL - I am honest, most people find that very comic
moptop (17/11/2009 20:51:35): did I tell you about the mouth x ray?
frankee F (17/11/2009 20:51:43): no you didnt
moptop (17/11/2009 20:52:15): ReallY? I'm surprised. You know I was on those codeine things and spending a fair amount of time in an alternate reality
moptop (17/11/2009 20:52:59): I was asleep in bed (this was last week I guess) at 2 - afternoon nap - when knock on door, 'hi, you ready for your mouth x-rays?
moptop (17/11/2009 20:53:28): Well, no, what mouth x-rays? - don't you worry, I take you there and you'll be back in no time - okies
moptop (17/11/2009 20:54:00): So befuddled he got me into my dressing gown and slippers, onto a wheelchair and off we toddled.
moptop (17/11/2009 20:54:27): Down the lift, out of the hospital round the back and into a mini ambulance van thing
moptop (17/11/2009 20:54:37): Oooh I thought, I wonder where we're going
frankee F (17/11/2009 20:54:57): oh god lol
moptop (17/11/2009 20:55:21): So off we went, I had to hold onto my head quite hard because he went over the bumbs at a lell of a lick and it hurt, but it was fun being out
moptop (17/11/2009 20:55:32): looook peopllllleeeee, traffficcccc
frankee F (17/11/2009 20:55:56): LOL
frankee F (17/11/2009 20:55:58): oh god
frankee F (17/11/2009 20:56:15): don they have xrays at the hospital? why do you have to go somewhere else?
moptop (17/11/2009 20:56:25): so then we got to somewhere, he wheeled me out, took me shomwhere, put me in a chair in a tiny waiting room and said 'don't move, until someone calls your name'
moptop (17/11/2009 20:56:36): Ok I said, and went to sleep
moptop (17/11/2009 20:56:49): I guess they don't have round-the-mouth-machines
moptop (17/11/2009 20:57:33): Someone called my name and I shuffled in approximately the right direction trying to explain I wasn't always like this, it was the drugs... maybe didn't help
frankee F (17/11/2009 20:57:55): *giggling*
frankee F (17/11/2009 20:57:57): oh god!
moptop (17/11/2009 20:58:08): happily they had a round-the-mouth machine that you didn't have to open your mouth for, because then we'd have been in trouble
frankee F (17/11/2009 20:58:44): oh thats good!
moptop (17/11/2009 20:58:49): Then they placed me firmly back in the waiting room and said now don't you move until someone gives uyou your x rays and comes to take you back!
moptop (17/11/2009 20:58:57): OK I said and fell asleep
moptop (17/11/2009 20:59:32): Here are your x rays here's the wheel chair in we go hop hop - they were all so jolly and enthusiastic and energetic, it was really hard to handle
moptop (17/11/2009 20:59:52): bump bump squeal of tyres (really) back to 'my' hospital
moptop (17/11/2009 21:00:35): being wheeled down the corridor and a gaggle of nurses appeared saying where've you been!? - Me - I don't know
frankee F (17/11/2009 21:00:46): LMAO
moptop (17/11/2009 21:00:56): I went to get my teeth x rayed - here, have some x rays
moptop (17/11/2009 21:01:04): and off he wheeled me back to bed
moptop (17/11/2009 21:01:12): I still don't know where this other place was
frankee F (17/11/2009 21:01:26): and the nusrses had no clue where you went???
moptop (17/11/2009 21:02:05): Oh I expect they'd have an informed guess. But none of them knew it was happeningn!
frankee F (17/11/2009 21:02:14): LMAO
moptop (17/11/2009 21:02:21): The outcome of all this is that the dental specialist chappy here says I have the mouth of a twenty year old woman
moptop (17/11/2009 21:02:23): so there

The Abominable Honey Accident

2010-01-05T22:31:00.001+01:00

A little excerpt from a convo between frankee and me today... and I would not like to say how long it took me to recreate approximately our chat colour and font habits!! apologies to frankee for editing her slightly - she had hysterics, and I like to allow people to find their own - excuse me honey bubn.

moptop: did I tell you about my abominable honey accident?

frankee F: no lol

moptop: day before yesterday, I was eating bread and butter and honey in bed - very runny honey - and I'm careful, you know; but it always manages to spread around a bit

frankee F: oh god lol

moptop: So I'd got my fingers sticky when it had dripped

moptop: and got out of bed to go and wash my hands

moptop: and...

moptop: when I went back to bed I discovered that I had a) failed to put the lid back on the pot, b) failed to put the pot back on the plate and c) knocked the pot over when I got up

moptop: all over the blanket

moptop: It was stunning!

frankee F: i bet!!!

moptop: I managed to spoon quite a lot of it back in lol - but blanket had to go straight in wash poor thing

moptop: god I got sticky - my computer got sticky - the cats got sticky -

moptop: honey and cat hairs, mmmmmmmmmm

frankee F: OMG

frankee F: the poor cats!!!

moptop: later on in the waiting room at the hospital Lionel said 'what's that?' and poked at something in my hair

moptop: Honey...

moptop: dear god what a mess lol

frankee F: rotflmaooooooooooo

frankee F: i cant breathe!

moptop: well, that's the high point of my week I think lol

moptop: I'd better blog it -

frankee F: oh fuck yes!! pleasae do!!

And now I can't get it back to normal lol.

Followers and comments - still probs!

2010-01-04T23:14:00.000+01:00

Hi, all; and a big hello to Sandy, I don't believe I know you, I am very happy if you find this blog useful or interesting or of support to you; and if you would like to talk, my email for this blog is sian.cooper.public@gmail.com.

Meanwhile, could those who have managed to post comments please say how, here? I have one friend who has a google profile, she has to select her profile or maybe only had to the first time - some others have had to put in some other sort of security thingy - Rachel, Debs, could you explain what you did, please?

Thanks! and stupid blog system silly hah - I have looked and can't see how to change it in my blog setup - Nils has Control over hers, she gets to Ok them before they show! Howja do that then hon?

Sorry for the last bad tempered post! (mind you this has a good old moan too...)

2010-01-04T21:30:00.000+01:00

As far as new year's eve goes, I woke up before midnight, L had a champagne glass of bubbly, and I had a champagne glass of water. We toasted the new year perfectly amicably.

The chemist - in fact, the village - wasn't open on Saturday, so I never got my extra pills. I had some less strong anti-nausea tablets and took them, but felt sick most of the time till this morning. Now, I've started eating again; not as well as I was eating before, because the zapping is affecting my tongue and swallowing - already getting a reduction in saliva. I will have to start walking around looking like a 90's pop star, with my little bottle of water!

To finish talking about stress, and really getting it all out of my system - because, yes, that is what I'm doing here, of course! -

Well, Lionel hasn't burst into song, but yes Nils is totally right, the strain is also getting to him; add his 20 year old being a serious 20 year old pillock (his mother threw him out just before Christmas, because he was being so poisonous to her and her partner - he's moved back here, of course. He is always perfectly nice to us, although booooooring); and the fact that he (L) started an online Masters just before I was diagnosed, which is being much more work than he expected, and of course he's finding concentrating difficult; and of course his work is stressful; and he keeps it all in because He's A Bloke, so I appreciate the pressure he is under, and I try to make allowances and support him...

BUT (get ready for the moan)

Yes, L does all the washing and hanging out - he did 99% of it before; and 90% of the cooking - he did more than 50% before; he doesn't do housework, so at the moment it just isn't being done unless I sweep vaguely - we are meant to be getting some help again, it had better be soon! we still do the shopping together, including shopping for his ill sister and delivering it to her (I drive and L doesn't); so really, nothing much has changed for him, in his life habits (except for his Master, and he's not working much at it - for which I don't blame him) but I just mean, since I manage and organise all my health stuff, and walk down into the village for my meds etc. normally, and so on and so forth...

Well, there is prioritisation, and I still consider that supporting me (like making sure I have the right medicine when I come back from chemo, or otherwise doing the thinking and acting for me at moments when I can't, which aren't that often) is numero uno: call me an egotistical bitch, but he can help his son find a job tomorrow.

Well, he's being more gentle, these last few days, so he probably feels guilty.

But we're fine, we're fine, with him being gentle I respond and relax quickly; so no arguments going on. I will just make sure it is organised in advance next time. As long as I know about stuff in advance, I can manage it and organise it. Total end of moan.

Boy that feels better.

Happy bloody new year

2009-12-31T19:56:00.000+01:00

Christmas was nice, I was really feeling pretty energetic and much more myself by that week, we had friends round on the 23rd, made it as easy as poss using frozen canapés and stuff, there was 8 of us in all, it was a lovely evening washed down entirely with champagne. Then Russ and Pat and Pa came down on the 27th, which was a similar sort of meal plus soup, and it was great to see them, and great for them to see me on good form. Ma sadly couldn't make it because she had a cold and felt crappy, plus it was important I didn't catch it. On the 24th we had a dinner just me, Lionel and David his son; L had cooked a duckling (I guess - canette) plus purée and green beans, the duckling was cooked in its juices with mixed wild mushrooms and it was lovely BUT - I couldn't eat it; and the purée was too dry for me too; and I ended up chocking and having to spit a mouthful out and felt really bad for L who'd made the effort...

But, well, he also didn't make the effort to add the requisite things to the purée for me, or to do anything about it when I had those probs. In fact, I'm really pissed off with him at the moment. We had a massive row a while back, I was saying I needed more support like cuddles and understanding, and, well, I sure as hell didn't get it. He accused me of refusing to stop being ill - I can't remember the exact words, but I actually think I'm doing a brilliant job of coping, and he's not. But he refuses point blank to see a psychologist or any other form of support.

So Monday, started the chemo and the radiotherapy. Most of the chemo was having a large quantity of water dripped into me, and peeing in containers to make sure a large quantity was also coming out. The chemo itself only took 2 hours. The radio doesn't take long, 5 or 10 mins - and they've moved the appointment from 7 pm to 3pm which is much better. While still in hospital they also added plenty of other stuff into the drips to control nausea, which obviously worked because I really felt fine, apart from I had a totally splitting headache, and over-sensitivity to light, which the nurse reckoned was probably because of the quantity of liquid they were shoving in me (3 litres/24 hours). I have to stay at 2 litres a day (although it can be soup, tea, anything, not necessarily just water), and work myself back up to 3 litres a day a couple of days before the next chemo session.

Back home Wednesday, feeling a bit tired, went to bed at about 6 for a rest, woke up at about 8.30 had some soup, couldn't face anything else, took anti-sick pills L had gone to get for me (such an impressive array of things to take I had to write myself out a special schedule). This managed to cause a row, because I knew exactly which pills I needed to take, and he refused to listen and read the papers and told me which ones - wrongly. I had to go and get my schedule and show it to him to make him listen. I mean, the ones he wanted me to take were anti-nausea, yes, but for the first 3 days I had these special extra-anti-nausea ones, which even had their own special prescription with extra copies that had to be sent to various places.

So I got my pills, and went to sleep again. L came to bed at about 1, I was vaguely aware; I woke up at about 3 to go to the loo/mouth wash (have to do lots and lots of mouth washes with a foul mixture of bicarb of soda, aspirine and some nasty pink stuff - 7 to 10 times a day) - thought I wouldn't get back to sleep again (had a bit of a battle with L's snoring), but in fact slept right on until 10.30!

Wasn't feeling good, and needed some other pills for the morning - discovered that I had only been given one box of 2 pills of the special doobries, the others needed collecting today. I talked to L about it, that he'd need to get them for me. I was not up to driving or walking anywhere. He went to town at about 2, I got ready for the taxi for the radio therapy, he came and found me at the hospital, and we taxi'd home together. I was feeling really crappy and my neck/tongue are already starting to hurt from the radio treatment, so went straight back to bed. So far had managed only to consume a hot chocolate, a caramel desert thing, and an HP drink. Plus put myself on some water drip in the morning, but again only managed about 200ml. So I put myself on a food drip, nice and slow, but had to stop it after 200ml, felt too sick. Slept. Woke about 6.30 still feeling really nauseous and decided to take my evening pills... but L hadn't been to the chemist's. And it is new year's eve - everything closes at 5, and will stay firmly closed tomorrow. Since I only had 3 day's worth of these pills, it hardly seems worth getting them on Saturday. Luckily I do have the other anti-nausea pills to take, but they are not so strong. Anyway - I'm really really pissed off with L, he doesn't have to think about much for me, I manage almost everything for myself, and this was important.

Also, domestic help: we agreed months ago that we would need some and he decided he wanted to use the service provided by his insurance company. After yet another altercation, he finally put the online request in today. Who knows when it may start. Plus it's really expensive - I should probably talk to the social services and see if I can't get some cheaper assistance from them.

So I'm pissed off with him. and I doubt very much I'll be awake for midnight.

Christmas and all that jazz

2009-12-16T00:59:00.001+01:00

Many thanks to Lins for her long and thought provoking post. As far as her suggestions about sitting around on mountains or on squares go... I feel she may have forgotten what 'cold' means!!! But I do like her idea of thinking now about next year; although I'm not sure I can do it. I'm pretty much one day at a time at the moment, I feel in limbo just waiting for the radio therapy and chemo to start. But I don't approve of the total non-Christmas-ness I feel - I have not been shopping at all, and hell I miss charity shops! My UK habit was to be buying things I saw throughout the year, there was always interesting/fun/silly stuff around - the French shopping world is less full of it and almost entirely lacking charity/second hand shops. Although, there is a big boot sale near here every Sunday morning - still one weekend to go. I havn't seen anything that made me go 'oh, I just HAVE to buy that for x' when we've been, but I think I've also been very self-centered; and being with Lionel cramps my style rather, he likes New and can't understand why I like all this dirty old stuff, especially the weird things I tend to be attracted by. But at least it does mean I am not filling this place up even more with useless Stuff, because I am very gifted at that.

Anyway - I'm rambling rather this evening - I'm rambling rather all together, actually, I have very low concentration and my memory seems to have stopped. All part of my limbo, I think - a blankness in the brain linked to non-planning. This is not depression, although there is of course an element of fear in it - everyone has been so careful to tell me that the radiotherapy is really going to hurt and just exactly what the side-effects of the chemo are going to be. So - hell, surely I should be taking advantage of this festive season, especially since I'm eating so much better now (boudin blanc and rosti last night), also seeing my family and enjoying them while I'm feeling good. That is far more important than buying bloody presents, or even sending cards, although I really do want to do that, because I want to thank people for all the good wishes - small problem of a) having lost my address book (cat AStrophe!!) and b) knowing that various people have moved, and I know I don't have their new address - it feels complicated, so I'm dodging it. Can't dodge it for too long, or I'll be too late.

Lins however has quite rightly pointed out that when I go to my folks, I normally look after them, and I won't be able to, which will frustrate me; and they won't be able to look after me, which will frustrate them; and we'll still both try to look after eachother and get worried and cross with eachother for doing it... and Russ and Pat may end up looking after all of us, which would be totally unfair; especially as, even if I'm doing really well, I still have some food preparation specialist requirements, which at Christmas would have to be a pain.

So - resolution - tomorrow is my shopping day - oh. Rats - it is also Wednesday, so L only works in the morning, and therefore I will be taking him into town in the afternoon, and we will be shopping together. Now that has its assets - he can carry stuff :D - but again, his tastes are so different, and he also relies on me to choose purchases for his family. So - resolution - Thursday I will go out on my own and shop. Buy hideous French greetings cards (why can't they do nice ones??) and stamps, and try to find some pressies for close family. I'd really like to buy Lionel something nice, but he has expensive tastes - I mean what he really wants is a bloody great HD TV, 22" or something equally awful - but even if we pay 50/50 we can't afford it, which frankly is a relief. The other thing he has always really wanted is a good StarWars light wand... do you realise they are about 150€??? Really! that is ridiculous.

Oh - and it has to be a cheap Christmas too - that 1200€ for the dentist, I'm not getting back. Having also paid out 1000€ for some work on my house for that month, plus normal out goings like car payment etc., even though I was in hospital I went so over drawn that I was 'interdit bancaire' (this means you are not allowed to write cheques that have no funds to pay them) and had a cheque bounce while I was in hospital - so this month's salary was largely noshed before I started... this sort of economic problem has not happened to me for so many years! Charity shops, where are youuuuuuuuuu.

I am tempted by the electronic card solution - but it is just not so good, is it?

Stitches and scars

2009-12-07T16:53:00.001+01:00

It's good and bad... had the remaining stitches taken out of my neck and wrist. The wrist stitches took a long time and are probably not complete - because apparently they had been left in too long and the skin has grown over them in places. They reckon the strange round seeping blob on the wrist is due to an allergy to the stitches - you could see there were stitches specifically around that area, not sure what the area itself is still, though; there are other little allergic reactions happening all round the edges, so this sounds quite likely. She removed all she could, but she said the body now just has to cope with it, and various bits of thread will probably just pop up from time to time and I should cut it off or pull it out. Eeesh.

Stitches left in too long - so who's bloody fault is that? There were no instructions left on the subject and when I was in hospital no-one seemed to know if these particular stitches needed to be removed or if they would be absorbed. I'm pissed off about that.

The scars from the major neck surgery are truly minimal. The worst of it is actually just dirt!!! so now the stitches are out and the scabs are off, I need to tend to getting rid of the nasty black line, yuk yuk, gentle soaping every day.

It's the tracheotomy that's the issue - a deep scar somewhat hidden by an overlapping pocket of skin, and it pulls when I swallow. I in fact find it much less comfortable without the dressing - or without putting my fingers on it, for when I swallow - havn't coughed or sneezed yet but I suspect the same will hold true. Frankly if they were able just to sew the upper bit to the lower bit and the two fused nicely, it feels like it would solve the problem! I know there are various plastic surgery techniques available to fix this issue.

Under my chin it is still all hard and swollen and I'm hoping that this is not going to mean I have a permanent 'sewn in' double chin that stays even if I lose weight! but certainly, it's going to take a considerable time to heal - I really need to track its progress over a year or more. My wrist is not a pretty sight either.

Oh well, oh well - I'm alive, aren't I!

Apparently because I'm on sick leave I'm not allowed to leave the department - what should I do about Christmas !?

Such progress!

2009-12-06T18:28:00.001+01:00

The visit to the nutrition dept at the hospital was really useful. Lots of tips and ideas for beefing food up whilst still being able to eat it - got a prescription for high protein drinks/desserts and some protein powder, that has no taste (so they say...) - so can add it to soup or purée or whatever; also to use full fat milk, and add fromage frais or cream to soups etc., and cubes of ham etc. And eggs - they are really useful of course! Also signed up to a phase 3 product experiment - not product exactly - food supplements that are believed to assist in protecting the mouth/gums during radio therapy and prevent the sores etc. As a test subject, of course I don't know if I get the product or the placebo, but I'm happy to take part.

Anyway - I also decided to start using the mouthwash the dentist had given me, instead of the normal chemist-available stuff, and use a softer toothbrush, because I've been starting to get sore gums - this is purely because they are softening up from lack of use. I do not want to start the zapping with gums already sore! It may be co-incidence, but I have suddenly made some great strides forward on the eating front.

Yesterday morning when I woke up I drank some water and realised I could swallow almost normally - let's say 90% normally. We had to do the normal domestic stuff and went shopping (we also have to shop for Lionel's sister), then had to go into town to pick up L's dry cleaning, I was getting really exhausted and had had a crying spat after the supermarket - sheer tiredness - partly because I hadn't yet eaten all day. I don't do breakfast (hot choc) and we'd gone out at lunch time; so we went to a Flunch, and I managed half a portion of poached salmon, a spoonful of ratatouille to wash it down, and a bit of spinach; plus a tiny fresh goat's cheese with just the soft bit of the bread; and a tiny bit of dessert. I couldn't manage any more, it was really hurting my neck, but I was very pleased with myself. Still only chewing on the left, though. In the evening I had Savoyard soup (potato and cheese) with extra cream in.

This morning, I realised that the last stitch in my mouth has gone - right back near my lower right wisdom tooth - and that that area of my mouth (which has been the most sensitive up to now) was getting much better; so I decided to attempt a bit of chewing on that side. Well, maybe 'chewing' is an exaggeration, it was after all only mashed banana in yoghurt - but just dealing with food on the right hand side of my mouth was a big step forward, and actually really scarey; because of course my tongue is partially numb, I can't really feel what's going on, and so guiding food correctly is difficult. Anyway - I'm sorry I go into so much detail about this stuff which is probably a) totally disgusting and b) completely boring - but it does me good, and I AM proud of myself. Because, having managed the banana yoghurt ok, this afternoon I ate 2 (small) slices of bread, one with Boursin one with honey (and both with butter) - and I chewed some of the non-crusty bits on the right hand side. That is SO good!

I have to keep a close eye on my enthusiasm - my weight is stable, at 67.4kg. So I remain 4kg down on my original over-weightness; but however enthusiastic I may feel about my ability to eat improving, I'm not exactly eating a normal quantity - small amounts seem so huge! So well, I will have to be good and keep up the supplements and the goo, although I'm not gooing every day.

AND today I took a shower - with Lionel's help, I couldn't manage on my own, since I can't get my left forearm wet at all; I didn't mind getting the tummy or the throat dressings wet, both of them will be open to the air soon, and the nurse was due soon. It felt so GOOD - unless you havn't been able to shower but only to wash standing up with minimal moisture for several weeks, you really can't appreciate how wonderful it feels... just to have the water flowing over you.

I'm so happy!

My busy schedule...

2009-12-03T20:03:00.000+01:00

Well OK it's not that busy, but it is just starting to hot up a bit, prepping for the radiotherapy. Today I had some sort of cardio scan - they inject you with a couple of products at half hour intervals then you lie in a machine without moving for 10 minutes. This is because the chemio can affect one's heart, apparently, so they do before and after tests; if they see anything wrong happening I assume they react accordingly.

10 minutes is actually quite a long time not to move at all, especially as there was nothing to rest one's left arm/elbow on - I had my thumb tucked in a belt loop on my trousies, and just had to sort of hold it still... this got very wearing!

Tomorrow I meet the gastro-nutrition team in the radiotherapy department. That'll be good.

Monday, I'm seeing my surgeon again, they brought the appointment forward because my lovely nurse is not happy about a strange round blob that continues to grow, on my graft donor place on my wrist. This spot has always been different, initially it was a sort of hole in the skin, now it is rather weird, 3 nurses have looked at it and said 'don't know what that is', so I'm very pleased to be going to see my future husband tomorrow.

Can't say the courtship is advancing well otherwise, though.

On the 8th I have 2 appointments, one with a Dr who I have no idea what he is or why, then with the hospital dentist - they again wish to be sure I have good mouth and dental hygiene before I start getting zapped. And on the 10th, I have my simulation scan and mask fitting.

That's the end of the flurry of activity until the 28th (unless they decide they need to do something about my wrist). On the 28th, I go in for my first treatment, which is chemo and radio. I'll be in for 3 days. This is so they can do a pre-treatment urine quantity/quality check, and a post-treatment comparison, because apparently the chemo can damage the kidneys.

I'm very glad I'm only getting 2 lots of this chemo considering the possible side-effects! I mean, do I really want to be cured of cancer (because I'm sure the treatment will be successful), but left with a heart and kidney condition? really!

But you don't lose your hair, so that's ok.

I calculate that the treatment ends after the 1st week of February. I guess there will then be post-treatment tests, scans, etc, to see how it's done. I then have a month to recuperate, and then I should be back to work! Trying to decide if that makes me feel enthusiastic or not ;)

Answers to questions

2009-12-03T19:50:00.000+01:00

Rachel left a comment with loads more questions in, so here goes on answering it all! Rachel's comments in italics.

It is all rather complicated. Think I would find it bewildering and overwhelming.

You get the hang of it! The goo machine is easy-peasy, dealing with the tube is easy too, you just have to remember to block/unblock it, which is the bit I do still tend to forget at intervals... but I have far fewer disastrous gooey moments lol.

Is drinking with a straw a bit easier than eating? Or does that have challenges too?

I just tried this for the first time today, as it happens, for a high calorie drink. Took a bit of getting used to, have to be careful I aim the straw in the right direction - or rather, the left direction! - so the liquid doesn't hit any sensitive/non-swallowing bits, but I've got the hang of it now. I don't think there's any comparison better/worse really.

Mmm set custard would slip down nicely, plenty of calories too. How about cold consomme?
Set custard mmmmmmmmmm - all that sort of thing yesssssssssss. Although Bird's custard (which is the only real custard) has never been the same since they took the no doubt highly carcinogenic yellow colouring out of it! and I'm sure they must have removed some flavourings at the same time. I've never been one for consommé, but it would be good for me... I'll have to think about it.

Today I managed to eat almost a whole slice of bread - well, by English loaf standards, actually, probably less than half a slice - but I can manage it, in very very small pieces, with generous butter to help it slip down, and I also had tuna rillettes on it. Can't translate rillettes, but it's a sort of tuna paté but a bit coarser. My decision tonight is scrambled eggs with smoked trout (havn't got any smoked salmon hanging around). Doesn't mean I'll necessarily eat that tonight... I think I'll be soup and bread, but a hearty potato and cheese soup yummy... must appreciate it all while I still have my taste buds.

I'm working on making myself take more in orally (calm down boys - I also have the problem that I really can't open my mouth very far) - but using the syringe less for liquids, and trying to eat rather than goo. However, I think I'm not taking in enough calories at all. Well, I know I'm not... so I still have to make myself goo. But if I don't goo during the day, then it's no fun for poor Lionel, who understandably likes to eat in company.

The windows sound an improvement, shame they did not get put in before you came home from hospital! Anything like that makes a huge mess and needs lots of cleaning which is probably a bit too much for you right now.

You are so right the windows really help to get the place warm which was being a problem, but I can't deal with housework, just doing any small thing exhausts me. But yippee today we agreed with the lady who does the flat upstairs that she will come to us 3 hours a week at least for the next few weeks (then she wants to reduce her working hours to revise for her degree). Since the flat upstairs is spotless, I have high hops - although the flat upstairs is also organised and doesn't have STUFF all over the place, which we do. We shall see!!

Goodness, all that paperasse to deal with! What a pain and peculiarly french. Presumably you need to sort it out fairly immediately. Does your GP get involved now to prescribe the other things you need? It does sound a worry that you don't have everything you need.
Yes it really is a pain in the arse and wildly French. I got to see my GP - she had to fit me in in the evening, you know these people work SUCH long hours, the doctors, the nurses, they all look completely exhausted! - she re wrote the sick note for me for 2010 which was a relief, and was also perplexed that I had had no prescriptions from the hospital, she did the necessary.

Rather unusual for a french doctor to underprescribe. Can you get Gaviscon, for the reflux, from the chemist?
Yes it is isn't it? although I guess there's a difference between underprescribe and just... not! you can get Gavison and I have some, although have to say have not found it wildly effective, but now also have the single daily tablet. Have worked out I can shake the contents of the capsule into a bit of yoghurt and eat it that way (it is quite sweet and crunchy), it didn't disolve well. I certainly can't cope with swallowing actual pills yet.

There! Rachel all catered for!

Paperwork paperwork and inefficiency

2009-11-30T22:25:00.000+01:00

I've been signed of work until the 3rd March... 2009. Yippee thanks docs for a small paperwork issue that will of course cause havoc.

The exit from the hospital was in fact chaos. Originally I was supposed to leave in the morning, then they said 14.00h, so I could get to see the re-education lady in the morning; I arranged the taxi-ambulance for 14.00, but my paperwork wasn't ready, so I re-arranged for 15.00, but had to phone them at 10 to, because my paperwork wasn't ready... finally left at 16.30.

The paperwork was a set of prescriptions for the nurse, to know what dressings I needed, and for the medical product providers (goo, goo machine, dressings, etc.); my sick note (for the wrong year as mentioned above); my travel note, to cover the cost of the taxi-ambulance; and an exit-note. Once I finally had all that, I could go downstairs to the Exits Office, hand them my exit note and get another sort of exit note. Luckily I didn't have to pay anything, I believe they do all that directly with the social and the insurance.

I was not given any prescription for pain killers, acid reflux control, vitamins, iron supplement, sleeping tablets or sedatives, all of which I was being systematically given in hospital. Vitamins, obviously I can do them! OK, the sedatives I have, my happy bunny pills of which I take a quarter occasionally, just takes the edge off; the sleeping tablets I really can't carry on taking, been almost 2 months, so I use a quarter happy bunny just to help me drop off. Most definitely not so effective, but I am sleeping much better, so I'm sure it's adequate. Have started waking up in the small hours again though.

However, all the rest - I am quite shocked actually. The acid reflux control is important - the acid (bile and gastric juices) coming up into the throat can actually harm it, and can even be one of the causes of cancer; additionally, it can cause oesophageal damage, a complication not desirable right now thank you. I get acid reflux quite a lot, so it really needs something. They were also giving me iron supplement because I am a bit anaemic. Anything that weakens you is a no-no.

So must get to see the doctor.

The goo tube, weight, nutrition

2009-11-30T21:55:00.000+01:00

Goo-tube details as per request from Rachel - again, faint-hearted abstain.

The tube goes in just below the left rib cage. I'm not sure how much of it there is in there - probably quite a lot, I know I was amazed at how far my nose tube went when I had my little spat and tried to pull it out... There is a clip thing that you can open/close that covers the actual hole - when the clip is open you can move it on the tube so that you can clean the entry point. This is currently still being done my the nurse, because it was inflamed and still is rather. This also allows you to... eeeesh.... 'mobilise the tube' - pull it in and out a bit - to make sure it doesn't stick... sorry... I don't like that bit at ALL - but it'll be fine once it's healed up properly. At that time, it will just be open to the air, not dressed at all, and I will just clean it with gentle soap and water, put baby bottom cream on it and close the clip. Not quite at that stage yet, it makes me go all eugh.

Apparently it is ante-deluvian equipment - because it's a public hospital, they have the cheapest type. Modern ones, you just have a sort of button over the hole that you clip the actual but on/off, so you don't wander around with tubey-bits hanging around and getting in the way - the external bit of the tube, including attachments, is about a foot long. So it's really not conducive to sun-bathing.

I will have the goo tube until some time (not known) after my radio therapy is completed; apart from re-education needs, I have been firmly warned that my throat is really going to hurt from about week 3 of radiotherapy, and I will have trouble swallowing, so that is principally why I have it: it is really important to make sure I don't lose too much weight, so nutrition by whatever means is vital. Will be getting some high protein drinks too I think, to help me now. I try to eat-eat as it were, but it's really hard - stuff sort of gets lost in the mouth, you have to be so careful not to swallow wrong, it's slow, everything gets cold and since I can only eat mush if at all, it's boring... except for Danone caramel deserts, I have a real craving for them, and that sort of thing stays together in the mouth and slips down easily.

I lost 4kgs in 3 weeks, so obviously I have to slow the weight loss down. Ideally I don't want to go under 60kg (so ok I still have PLENTY of leeway!! I'm at 67kg approx.).

Not blogging am I

2009-11-30T21:32:00.000+01:00

Back home and really don't feel like saying anything... have a nice nurse who visits daily for my dressings... not eating well, so doing goo... felt a bit more energetic today and actually did some housework... and got agreement with L today to get some hours from the lady who does the cleaning in the flat upstairs thank God. Desperately overdrawn because of dental cleaning process which was the 1200€ I wanted to get refunded and thought my insurance had agreed but the money has not been forthcoming and I also paid my nephew 1000€ now I have cheques bouncing - stupidly, I changed my branch from the Espé one to one here just before going into hospital, the Espé one would not have done this and if they couldn't get hold of me they'd have talked to my mum and understood; my new branch of course don't know me from Adam and have just baulked. I have to go see the buggers, also the doctor, but didn't get it together to call either of them today. They were changing our windows - taking out the 1970s wood ones and putting in nice new plastic double glazed white ones - no not my normal taste but in a standard flat, they are GREAT, makes a real difference to the heating and the place looks soooooooooo much brighter. But it was difficult today while they were putting them in - I had to move from room to room desperately trying to keep warm. November is not the best month to do that sort of work in - I bet the lads doing it were freezing, but I'm far too selfish to have spent any time checking on them, I'm afraid!!

Oh and by the way

2009-11-24T11:57:00.000+01:00

I'm out on Thursday! Hospital assures me they will arrange for goo machine etc, I just need to take my lovely flowers. The amarylis my ma gave me is STUNNING

Oh how goomusing

2009-11-24T11:54:00.000+01:00

This space goo malarky takes some getting used to. I am improving, but it is still a constant chore. It is sticky stuff, and stains, so if you do drip it or squirt it or whatever anywhere, it is unpleasant to clean up. It gets quite complex sometimes (alright, it may not sound complex, but in my current small universe it's VERY complex), having to switch between medication, hot chocolate and goo, and trying to stay clean at the same time.

Medication and hot chocolate are syringe-applied. To continue in my usual line of assuming you all have strong stomachs and want to know the gory details, the stomach thing has a length of tube sticking out, with some attachments on the end that let you screw bits in or stick other bits in. On the tube you have a small plastic clamp. This you have to remember to do up or undo, in order to allow matter in and, most importantly, to stop it all coming OUT again. That is the really fun bit. The other day was feeling a little bit down - washed, did my hair, put on a nice clean nightie to perk myself up, did my medication (crushed in water, syringed into tube) then my hot choccy (which is also syringed in and really just for the smell). For whatever reason, even though I clamped the clamp, the hot choccy did not want to stay in, and I had a devil of a time not chocolating myself all over. They onto brekkers proper, yummy, fibre goo. This time I forgot to clamp the clamp when I was attaching myself, and my clean nightie became a thing of nightmares. Me floods of tears.

I stamped my feet at myself a few times to stop myself being pathetic, washed it as best I could (without getting the wrist dressing wet...) and put it on the radiator to dry. OK, OK, I had another one. It's just that... it's so sticky and it has this particular smell - not unpleasant just... I don't know, particular and it makes me think of hospitals and old people; and I wanted to wear THAT nightie and sometimes it's those little things that just bring one down.

Yesterday I almost managed 4 full packs of goo. I can now do the fibre goo at 250ml/hour, which is around maximum, so one pack takes 2 hours. I can't do the ISO that fast; I tried it last night, and after 2/3s of a pack had to stop, it gives me a bad back. That may sound silly, but I'm sure what I need is for someone to put me over their shoulder and pat/rub my back until I have a jolly good burp, and then it would be all better.

Maybe I can start practising projectile vomit?

Well if she's going to do it...

2009-11-24T10:50:00.003+01:00

Nils just said she can't help it, she's turned into one of those who posts bits of poetry (in this instance I preferred the photo which immediately let me smell that wonderful autumn bonfire smell, but let's face it I was too lazy to read more than the first 3 lines of the poem... sorry 'bout that).

So it made me think, hey, I own this: so I'm going to post a poem and it means I'll retain ownership of it. I THINK. If not well hell it's only another poem that I can't enter into a competition or publish elsewhere or whatever. I just like this one.

Corn Goddess

Weaving, twining her fingers and hands,
Her limbs waving like corn in the wind,
She beckons - come to me, come to me;
I follow, blind, enticed, entranced,
her movements an entrance
to another world, a dance,
divine. Her eyes glisten
as I near her. Her smile lengthens.
A step. Another step. Again, a step.
And then I am surrounded by the wind
and the waving and the weaving; bound
and ensnared. Suddenly,
everything is green.

Just in case and because some people have said this stuff is important - I'm a total naive about it - copyright Sian Cooper 2007

And here's one of the fun ones

Max is one of my cats, once upon a time a kitten.

Max just did a smelly poo
I’m sure he wasn’t meaning to
Perhaps he has a dicky tum
And probably a quite sore bum
Max did use his litter tray
I’m extremely glad to say
But now there is a nasty niff
The kitchen’s full of horrid wiff
Max just did a smelly poo
And now we’re all suffering, too!

Keep smiling!

Tired... but things move on

2009-11-18T19:24:00.001+01:00

My parents have been here the last few days, visiting me in the afternoons, plus Lionel of course; a lot of the time they have the joy of watching me sleep - and boy do I drool a lot at the moment!!! - but it's not all fun, they do get to have to converse with me as well, and get thrown out at regular intervals as gaggles of nurses and doctors come in to do unspeakable things to me.

So I had this stomach feeding tube fitted on Monday - no-one told me it REALLY FKING HURTS - but tube came out of nose so voilà I look more like me. They started me on a very slow saline drip feed into it yesterday, and I am on my first spaceman's mush pack as I type. I hope I will stop feeling so tired now I'm getting mushiment again, glucose drips are all very well but after 3 days you feel the need for some decent stomach clogging goo.

They removed the dreaded canula today, I don't know if that's what you call it in English, the tube they put in the hole of the tracheotomy so you can still speak. I now have compressing bandages on the left of my neck but not on the right, because you cannot endanger the graft by limiting the blood flow. Whenever I want to talk, sneeze or cough, I have to put a finger on a particular spot on my neck (marked by an adorable blob of cotton wool), and push up - this is to encourage the hole to stay closed and not to be used as an airflow any more. That is all very well, but I can't bend my right elbow enough to use my right hand to do this, because the veins in my hands gave out last night and they had no choice but to go for inside of elbow as my infusion point, no, I don't know how to say that in English, either! - so I have to use my left hand, but that is the one I use to hang onto my side which hurts when I cough or sneeze... there's no winning this one, I take the pain and scatter saliva liberally around.

They are making an appointment for me with the radio therapist specialist chappy, and they are going to see if my existing portacat actually works or if I'll need it removed and another one put in, please god no. I don't want any more ops right now.

Apparently my tongue graft is beautiful - medics are strange things, nurses say the same things about various other of my wounds - but there is a 'precarious' area in the front, which is pale, indicating insufficient blood flow and possible issue; but it seems to be behaving ok otherwise, so it is just being kept an eye on.

There are rumours of letting me out next week, with home nursing visits. We'll see. Feels a little early to me.

Thank you all for your comments, I'm sure you'll understand if I'm not emailing you personally at the moment, I truly do not have the energy for much stuff at all. But your good wishes really bolster me up.

Look it's me

2009-11-15T18:48:00.000+01:00

I'm finally online at hospital, and quite a lot of the time I'm compos mentis enough to update this. Right now, however, is not one of the compos mentis times, or at least I may have some comp but very little ment, so this will be short. I'm doing well. Tomorrow I have a thingy put it so they can feed me through the stomach directly, because I wont be able to ingurge properly during the radio therapy. When I leave here (end Nov ish) I should have 80% swallowing ability. I'm sorry, all that makes me think about is chocolate and tea. It should also mean I have the feeding tube removed from my nose in the next couple of days and soon after that, the tracheotomy. I so look forward to both of those going.

Overall I feel fine, I have my moments, Lionel visits every afternoon plus a few other people have dropped in, I can't talk too long and do tend to start snoring in the middle of other people's sentences, but its great to see them

Thanks to all fr the cards good wishes etc xxxxx

Useful fact

2009-11-03T16:05:00.000+01:00

It has been determined that the most used sexual position for married couples is the doggie position.

The husband sits up and begs.

The wife rolls over and plays dead.
_____________________________________________________________

Peace and love to all, blimey, I never thought I'd say that!

Oh and - thank you

2009-11-02T19:44:00.002+01:00

Thank you to everyone who reads me, comments, mails me, lets me know they care. Every single message of support makes me feel loved and stronger, and I am really touched and grateful.

Hugs to everyone.

Did I confuse everyone?

2009-11-02T19:28:00.001+01:00

With pre-apologies to Steve, Stevie and Chrissie for not being fluffy, funny or filthy enough! I'm afraid this is a very serious issue, and I obviously need psychological assistance. I had to have a conversation with myself today to decide whether to wear and pack the Seriously Big cotton knickers I bought by mistake (honest!) but which are, yes, comfy and warm; or some nice black lacy skimpy things.

You will be relieved to know the lacy ones won.

So - anyway - I'm going in tomorrow (the 3rd) for op in the morning (the 4th) - so in Tuesday for op Wednesday - various seem to think I'm in today for tomorrow - not so fast, Geronimo! (don't know why Geronimo, I've just always been really fond of that name. One day I will have a cat called that. Oscar almost was, but Paul didn't like it).

Had a full day today, including spending an hour on the phone talking my ma through how to install and use YIM. Couple of L's friends (also mine) came over for an hour this afternoon, and this morning I went to the doctor's to get my 100% cover confirmation slip, then to the clinic to ensure they had my cover up to date (wanted my deposit cheque back I had to give them when I had my endoscopy, but the girl couldn't find it; she swears they will post it to me; I told her if they tried cashing it, it would bounce anyway, between paying my nephew and the dentist I'm totally skint); also went to hospital for same reason and to get the sticky labels you need (bar codes, they use them to stick on everything, your bloodtests, your file, your forehead...), so tomorrow I'm able to go straight to the ENT department. I also discovered that the hospital hadn't had the ok from the insurance company for my private room, the insurance company said they had definitely sent the fax, they sent it again... hey ho, all administrations of large institutes are the same everywhere.

Note to self, call insurance co tomorrow to check if they cover the dentist's costs since he's billed them as 'dentures' and if so send tomorrow - it's 1200 euros, I need that money back!!!

Where was I?

OK - so after talking quite a lot today, and being overall jolly, and patient with my dear mama for an hour, my neck is really stressed and hurts, and my head hurts if I try to speak, and I can't think, it is tiring and I feel tearful; so it may sound strange but I really look forward to them taking this bloody thing out. Yes, I'm going to have problems afterwards, yes, I'm going to have to learn to swallow again, yes, I will no doubt consider the scar to be horrific, yes, I will be depressed at times and all sorts, but this thing will have gone.

What's more, I am going to sing again. That I am totally determined about. Ok, it may be with a slight lisp. Let's consider it cute.

Oh ha ha Steve

2009-10-31T10:13:00.000+01:00

OK so another friend who has had trouble adding a comment to my blog (darling you are sooooooooooo last century) - but here it is, we all know where it fits lol:

'Carrefour!!!!!!!!!!!!!!!!! Go and get something gorgeous. You're in France... there must be somewhere you can buy a negligé rather that a bloody nightie... visions of winseyette.... not pretty. far better to be post-op in silk than bri-nylon. xxxx'

Thank you Steve! This is especially important as I intend to marry the incredibly gorgeous surgeon who will be cutting various bits out of me. Someone pointed out that presenting yourself unconscious and naked to be carved up is not the best of seduction techniques, but hey, we do what we can; and some people would find that most alluring.

New motto: A Magnum a Day Keeps the Cancer Away

2009-10-30T14:01:00.000+01:00

Yes, I am eating one every evening as pudding, so there!

I mean dear God I've given up drinking and smoking and (at the moment) sex - surely I can eat a daily Magnum!

Count down

2009-10-30T09:27:00.000+01:00

Not had a lot to say these last few days, hence no blogging... I've been feeling fine, my voice is good (which proves I'm not stressed), I have reasonable energy levels - had a day out with the girls, in this instance L's boss who lives upstairs from us, and a long-term friend of hers, who is a games teacher. After a late lunch we went to the beach (I slept in the car) and walked, a pretty good long walk; then the games teacher went for a jog and L's boss went for a swim - she swore the water was lovely, 16 or 17 degrees (C), but even though it had been a beauuuutiful day, it was now 4 o'clock or later, sun going down, in October... no, sorry. She's mad. A couple of hours earlier, fine. I had a little snooze on the beach.

I have FINALLY got my social security rights sorted out. I am sooooooooo pleased, that has been worrying me. I have my 100% cover for my cancer treatment, and I have my private room arranged with my insurance. I just need to get the paper work off my doctor, which is being a bit difficult as she is off sick with a stomach upset! I'm amazed doctor's aren't off sick more often, after all, they have aaaall the germs going to them!

My parents and brother are working out re visiting, parents will probably go to a hotel. I have a feeling I'm repeating myself. Oh well.

Bought some new nighties, how exciting. Not exactly sex on legs - in the UK I was Miss Marks and Spencer, now I'm Miss Carrefour.

When I'm slim I'm going to buy myself the BEST lingerie!!!

Trouble making comments?

2009-10-26T22:36:00.000+01:00

A friend of mine tried to leave a comment, but tells me she wasn't able to, it demanded log in credentials or something... so if you have that problem, please mail me, I will try to work out how to fix it.

Weekend at parents', told them about the op., and was able to give them the contact number for the Aude group of English cancer support in France - all my thanks again to Kev for that link!!!

xx

Staged

2009-10-24T00:32:00.000+02:00

Ok, so quick update, went to dentist's, had a crisis, they were sweet, I was going to tell the story with all its comic possibilities but just havn't got the time/energy right now. Anyway half my mouth done, second half on Monday. Through dentist have discovered the wonders of Bromazepam. I now have a box of it. Boy, is that ever happy bunny stuff! I will use it occasionally when I'm really not feeling positive.

Saw my doctor next morning, she is very pleasesd I'm being treated by Dr Garrel, very pleased I have the happy pills when I need them, and very happy to give me more or stronger if I want them - but I don't want to rely on pills.

Saw anaesthetist in the afternoon, everything is fine (oh yeah except for the cancer) Then long and excellent meeting with Dr Garrel and my contact nurse. My partner accompanied me for that. I had written down loads of questions. He gave me very clear helpful truthful answers. I feel better because of it.

I now know I am T4A N2A M0 - so tumour stage 4 (advanced), operable, lymph nodes affected level 2, (lingual) tumor greater than 3 cms, no metastasis. Well I may not have that right exactly, but I'm very very lucky. Stage 4 (advanced) but no spreading. Phew and a half. Also, I am designated as 'non-important repercussions' to the treatment - they judge not just survival options, but quality of life after treatment. Mine should be little or unaffected, after re-education and recovery. OK, it's going to take probably 6 months till I'm back to work etc.

Oh - I will be having what we jollily call a neck dissection... so they will remove all the lymph glands in that side of the neck, not just the one that has lumped up. But they do a horizontal cut along existing neck lines, so it won't show too much. Mostly I'll need intensive re-education for swallowing. I'll be in intensive care for 2 or 3 days, and will probably need a tracheotomy to assist breathing at first.

Radio therapy will start about 3 weeks after I'm out of hospital.

Next stage

2009-10-22T00:19:00.000+02:00

So... the beautiful and engaging Dr Garrel phoned me this morning. They reviewed my scan at the inter-disciplinary staff meet last night, and agreed that I need surgery, removal of right side of back of the tongue - a lump of it anyway - graft (where do they take that from?) - and the removal of the tumerous cells in the top of the mouth, with which there will be a small incursion into the soft palate.

I should have no more trouble eating or talking than I do at the moment, after I've healed. I will be in hospital 3 and a half weeks, which will include intensive re-education (swallowing/speech therapy). Then another couple of weeks before radio starts, 6 or 7 weeks of that.

Then I need to recover. I need to expect to be out of 'normal' life for 4 to 6 months - I think that meant in total, rather than post treatment. But of course it all depends - I could be a brilliant swallower and continue eating like a horse, or I could need a feeding tube. We just don't know at the moment.

I've told my brother. I'm going to go to my parents' this weekend, and tell them. I shall not be quite so brutal with the truth to them... because another part of the truth is that there is only a 50% survival rate, 5 years after treatment. This type of cancer is very prone to spreading (but my other scans are clear, my other scans are clear). It will never go.

It is still confusing, that the other lot shrugged off the tongue cancer (which is actually still tonsil cancer, but on the tongue?!) and the necrotic gland not responding to radio therapy. I know that tonsil cancer responds well to radio treatment, and I know erbitux is a new treatment and acts as a 'blocker' to new cancerous cells growing. Is the surgery solution just a traditional knee-jerk? But - these guys are the bees-knees, really...

I went to the dentists and was so stressed, I went into panic, shaking all over, then I burst into tears and told them all about it. They were very sweet to me. And I do now have half my mouth all cleaned.

What's the story?

2009-10-20T09:17:00.000+02:00

I have been getting coughs after colds for years. I have also had bouts of laryngitis for years, sometimes unable to speak for 6 or 7 weeks. No pain, unless I actually tried to talk for any length of time, and that would stress it and hurt. Overall, my coughs and laryngitis are referred to as upper-respiratory tract infections and I have never, when they've been treated, felt that they were actually cleared up and genuinely gone. There has always been something lurking there.

Back in June, I got a cold, and as ever got a cough afterwards. I actually went to the doctor's, who confirmed it was bronchitis. I saw this as simply inevitable, because I was a smoker, with my history as above. She gave me an inhalor which helped, and anti inflammatories. My cough gradually cleared, although as ever I didn't feel it was all gone, and this time I found I had a place in my throat that itched. I could actually reach in and scratch it. I found this strange and mildly annoying, but I didn't think any more about it, and indeed after a while it went.

Then I got a swollen gland, and sinus infection. The gland was on the right, under my jaw, going up towards the ear. I went to the doctor's again. She went fthhhhhhhhhh, it's very hard! Go to the dentist's to check you havn't got any problems, because sometimes fillings can affect the sinuses, or you may have an abcess problem. Also, get full mouth x-rays done.

I did the x-rays, which showed no problems at all. This was July. I knew this wasn't a dental problem; I went into denial. I thought, it's all just part of the infections I get, it'll go away on its own. The aircon at work was really hurting it, I was OK for the mornings, but come the afternoons, I was in pain, having to wrap a scarf or more round my neck to protect it. And I was getting really tired, literally found myself falling asleep at my desk at about 3 o'clock. I started going home early sometimes. I did go to the doctor's several times during the next month, although each time I failed to see my own doctor and saw only locums. This was not exactly my fault, but then, I didn't push it. I was given anti-biotics, anti-inflammatories and lastly a pressured-air breathing apparatus, breathing a mix of various steroids and eucalyptus twice a day. Plus blood tests. The blood tests showed mildly increased white cell count, but then, I was on anti-biotics.

I will note that the anti-inflammatories and the breathing-machine did help, because I did have an attendant sinus-inflammation, and the gland-lump itself did also reduce in size, because the general area was inflammed through secondary infection.

Finally, towards the end of August, I was sent for an echography, to check my thyroid, while they were analysing another blood test. The thyroid was enlarged, I had quite a lot of enlarged glands all over the place, and of course this particular massive one, which was a visible lump on the side of my jaw/neck. At some point, round about now, I think, I got to see my own doctor, who gave me a prescription to go and see an ENT man.

Here in France, doctors don't do the specific recommendation and contact themselves, they just give you a piece of paper saying 'this person needs this treatment', and you sort the rest out yourself. So, I looked for one in my village/town. I was still in denial. He took one look down my throat and said, with his best bedside manner 'It doesn't look good'. He wanted to take a biopsy, so he started putting anastetic spray down my throat, we talked about my case history, he shoved a tube up my nose to have a look at it all, he shoved a bit more anasthetic in... then he came at me with the scissors and I burst into tears and refused to open my mouth. I just didn't want to know, didn't want him to do the test because I knew, had known deep down for ages, that it was cancer. He had to talk me down and eventually I got over my little crisis, opened my mouth and told him to go for it quickly before I changed my mind. The snip-ette didn't even scratch.

So, from a cough in June, we get to my biopsy result towards the end of August. Lionel came with me. Again, my ENT man's bedside manner was at its best. He didn't show us the biopsy - I still havn't seen it - but he said 'Well, it's not good, I'm sure you know that'. Yippee. I don't remember much else, except of course he said it's emminently treatable. I was sent for a scan, and at the same time he booked me in for an endoscopy on the 14th October.

1st October. I went on my own - it hadn't occurred to me that I might want any sort of support, because I'm not used to getting immediate results, placed in my hands, and because I hadn't learnt what it was like yet, getting emotional slaps in the face so you are so shocked you just nod and don't ask any questions.

They give you an iodine product intraveinously (sorry about my spelling), and you lie down and the machine does its stuff, sometimes you are told not to breathe. The iodine makes you feel really hot - well, that's what they said, I must admit I didn't notice it. Then you go to the waiting room, and wait.

Well, at this particular clinic, their bedside manner was none too hot either. A young doctor called me, we went into a despairingly blank room (a desk; some chairs; mostly white). He said 'Well, obviously you need operating as soon as possible, you've got all these lesions'. I know that is not word for word, but it is pretty close. He gave me the report. I smiled and said thank you and left. I drove home. I was concious of the fact that I should really not be driving because I was in shock.

The scan results, translated, say, as best I can do - I'm not a specialist in medical French!

'Thickening of the tissue of the right pharyngal wall, centered around the tonsil area, spreading over approximately 44mm high by 24 mm end to end and 17mm wide, heterogenerously raised by contrast.

This lesion spreads from the bottom at the valécule (no translation, word does not appear in any dicco I can find), upwards to the free edge of the soft palate (I think) and forwards to the back part of the mobile tongue and on the tongue base.

It does not cross the median.

Presence of an enlarged subdigastric gland on the right (yeah I know subdigastric is not too helpful... but I've told you about the lump and where it is), heterogenous, necrotic, measuring approximately 35mm high my 18mm on its small axis.

No other lymphatic gland abnormalities (this is VERY GOOD NEWS).

No bone lesions (also VERY GOOD NEWS).'

Now I have a memory blank. I really do not know what the sequence of events is now. We went back to the ENT man. No, I know Lionel only came once, so we must have got the biopsy result at the same time. See? I'm mixed up. The ENT man said we'd know more about what treatment I'd need after the endoscopy. 2 weeks to wait for that! it seemed such a long time. And nothing in between... I do remember asking, look, the scan says I've got it on my tongue as well, not just my tonsils, that's scarey, and he looked at the scan and said hmmm yes maybe there is some growth there... but didn't seem concerned.

OK, my ENT man is young, works in a rich little town, and specialises in aesthetic surgery. He doesn't do much cancer. But he called me at 8.30 the same evening (it was a Friday) and told me I had an appointment with an oncologist at X clinic on Tuesday. Hats off to him.

This time Isabelle came with me, Lionel's ex-wife who is a sweety and a nurse. In fact, I have to go right now to have lunch with her, so I leave you with that cliff hanger... after all, I had to wait!

Cats and alcohol

2009-10-19T08:58:00.000+02:00

Oh, and cigarettes.

So, I have given up alcohol and cigarettes. Just like that, with a click of the fingers. Before being told about my cancer, I was on the lines of knowing I ought to give up smoking, and actually smoking more through defiance when I thought of it (yeah I know, crap personality); and I was being nagged by my partner to drink less - had been drinking less for some time due to the nagging - and I missed it.

My drinking was what my man calls 'à l'anglaise' - he being French 'n' all. So I drank probably every day - certainly, not-drinking days were event days, hangover or ill, probably. I sometimes drank to excess, i.e. very drunkenness, but generally just drank until I was aware I'd been drinking, then I stopped. Half a bottle of wine, then just a little bit more. The little bit more gave me the squiffy factor. Not every night, but frequently.

I was far more worried about the drinking than the cigarettes; in that, I knew I was a cigarette addict, and I knew I could overcome it; but I was afraid to try to give up drinking, because I thought I'd find out I couldn't. Which would make me an alcolholic. I did not want to be an alcoholic! All of which, of course, means I am. Or, can one ever say 'was'?

Then my ENT man told me the biopsy was positive and I must stop smoking and drinking and I did. Wallop. I sucked a few nicotine mints for a few days. And I drank when I went to see my parents and tell them the news. But that's it. Yes, sure - I absolutely gag for a ciggy or a drink sometimes. Yesterday, for example! And, I expect I will drink from time to time, socially, for birthdays etc., but I know I will never drink to excess again.

I am peeved, however, that the instructions on radio-therapy, which I will be having with or without an operation, say nothing caustic like chilli, mustard, vinegar... lemon. Since stopping drinking, I had become an afficionado of Perrier Pulco - Pulco being an acidic fruit-based liquid that you dilute, lemon, lime or orange flavours. I like the lime. I also find bubbles are not good on the throat. So replacement drink number one out of the window! I now drink diluted cranberry juice.

My lovely and probably mentally unstable cousin suggested I get a cat - well cuz your suggestion is useless as ever, 'cos I've got three. I brought them over from England - Fizz, adopted from a sanctuary; and brothers Oscar and Max, paid for through the nose to get as kittens.

Fizz first night deciding she likes it here...

I have never paid for cats before, I have always been through a sanctuary (and donated, of course); but we wanted kittens or very young cats and the idiot Cat Protection League bunch of old ladies said ohhhh noooo you can't have kittens, you both work all day, you have to be there or it's dangerous you can't ever go out for more than 2 hours when you have kittens ooooooh.

Excuse me ladies but do you have any idea what CRAP you talk!!

So we bought kittens...I fell in love with Max first off, when I saw his 'promotional' photo...

I mean, how can anyone not melt totally when they see that? Then, when I went to see Max, I also met his brother Oscar,

and bingo.

This was of course in the UK, with Paul, at our lovely lovely Edwardian house with its marvellous walled garden. Which, I would like to mention bitterly, was designated, by the Cat Protection League lady who came to check it, as 'Cat Paradise'.

Where was I? Oh yes -

So - I shelled out the exorbitant sum for the two bundles of fluff, Max being ultimately more fluffy than Oscar, and we housed them in the spare room, which was also 'my' room, i.e. I had my computer and desk in there. We bought them one of those toys covered in carpet with holes and dangly things, and they had a wow of a time, in a safe environment.

We introduced them gradually to the house and Fizz. OK, it was not all smooth going.

Fizz left home. She didn't leave us, she just refused to come in other than to eat for the whole summer. I decided not to panic, as I was fairly sure she'd come back in and cope with the boys' presence once it started raining, which is absolutely what happened. At which point the boys discovered that she was a really, really good ear-boxer with high-quality hissing skills. And she did NOT want to be mum.

Oscar showed very early - on day one - that he was not the most fairy-footed of cats. The Cat Protection League ladies would have been knitting and tutting and nodding and going 'Told you so' right off.

The stairs had beautiful old turned wooden banisters, which also ran along the upstairs landing, turning the final corner that led to the spare room. We had left the door to their room open - under supervision, you note - and both kittens were sitting in the corridor looking through the bannisters cutely. Then Oscar cutely dropped through the bannisters - I was standing on the stairs admiring them, so I witnessed the action first hand. He fell spread-eagled, apparently training to be a flying squirrel, and bounced stomach-first off the newel post, to end with an impressive thump on the ground. Impressive for such a small cat and for such a worried new owner...

He was fine. Absolutely fine. No internal bleeding or anything.

A later Oscploit was more my fault, but still equally Oscar. It's those great round kitten orange eyes looking up at you saying 'why am I falling mum' that stick in the brain...

The boys were quite a lot older, and were allowed free range of the house in our presence, and only shut in the room when we were out. They weren't allowed outside yet.

The house was double-fronted, with bay-windows either side of the front door, and a tiled porch joining them. It was all slate tiling. My room was at the front of the house, with the slate porch/bay-window roof just below it.

It was a beautiful day. I was at my desk, which was in the corner right next to the window. The windows were all the original sashes, and this one happened to be broken, so I'd propped it open with a ruler or something. The single-expanse net curtain was still in place. My theory was that I would notice if one of the boys tried to tangle their way through the net curtain at my elbow, and I'd make them rejoin the floor.

As I was typing or clicking or whatever I was doing at my computer, I heard the unmistakable and seriously unpleasant screech of cat claws sliding on slate tiles, trying to get a hold. I had that moment of not moving, thinking 'Now, that noise sounds just like cat claws sliding on slate tiles' before I reacted. I leapt to the window just in time to see Oscar hanging onto the gutter with both front feet, looking worridly at me with those big orange eyes. Then he disappeared.

I have never got down those stairs so fast!!! I was especially frightened because his fall had taken him into the front garden - also surrounded by a low wall, but an unknown and extremely hostile environment for a kitten's first outing, with easy access to the drive and thence the road. I was also concerned for his health, despite his proven rubber-ball abilities.

He was sitting exactly where he'd dropped, obviously a bit overwhelmed - he was shaking his head as though to clear it - but again - absolutely fiiiiiiine. No broken bones or concussion or anything.

Certainly taught me a lesson about opening the windows, though!

Discovery days

2009-10-18T00:36:00.000+02:00

So... there are bad days and good days. Right now, of course, it's early days. I havn't started any treatment yet; I'm waiting to hear... and that, I find, is when the bad days come.

I try to be calm and good tempered and not let it show - oh, above all not let it show! - everyone goes on about how being positive is so important, keeping one's spirits up, not giving way to anger, etc. It makes me feel guilty, it makes me feel like I'm wrong, but damn it I need to cry, I need to vent, I need to be allowed to be scared! Surely, keeping it all in until it explodes is worse?

That's what I did tonight... well actually, explode is the wrong word; collapse is more like it. I have been feeling bad since yesterday - not in much pain, I'm very lucky I know that I don't have much pain; but definitely weird. I really don't know how to describe it. There is an element of panic, I'm sure: I can feel my body changing, I can sense that there is a progression, and I imagine, oh... I imagine everything. What is actually causing me genuine physical discomfort is the large gland under my jaw - it has increased in size again, with sinus inflamation, since I had a cold. It is creating some form of pressure that makes me sometimes lose my balance momentarily, so I stagger slightly; or I go a bit dizzy; and certainly go very deaf in my right ear. Actually it's not really dizzy, it's weird, it's like floating or falling a long way down but only for a moment; or just that I'm no longer in touch with the floor. I find this sensation extremely disquieting, and it is this that has been making me panic - because of course, I'm imagining brain tumours. I KNOW it's not, I know it's the pressure caused by the gland, but I can't help the imaginings and the fear.

And I'm ashamed of it... I'm ashamed that I'm not in control and positive and gung-ho. I'm ashamed that I'm so tired when I havn't even STARTED treatment or been operated on yet, and there are all these blogs of these wonderful people who work right through their radiotherapy etc., who seem to have so much physical and emotional energy, and I don't have. I'm not like that. I know I'm not weak in my resolve, or negative in my outlook on life, in general. But I'm not like that, and I don't have a partner who spurs me on and supports me like so many seem to have. Not that he doesn't love me, but he can't cope with emotion. And he has a LOT going on in his life.

Well ha ha he damn well had to cope with emotion tonight, I totally lost it. We were eating, and I was trying not to cry; I had been trying not to cry all day. I had tears rolling down my cheeks, but he didn't notice. Yes, of course I wanted him to notice! But I also wanted not to cry. I realised I couldn't not, so I tried to cry only a little bit and I asked him, relatively calmly, to show me some tenderness and to put his arms around me, and he didn't move. I cracked up a bit, and said look how you react and he said, no, not now, not like this, we're eating, and then I cracked up completely, I was there in front of him falling apart and he sat and looked at me without moving a muscle. I don't remember what I said, but I totally lost it and ended up grovelling on the floor sobbing uncontrollably, great gasps, and then he got up, he was telling me to stop, trying to make me get up and I wouldn't let him hold me, I twisted to one side and another, going round in circles at his feet with all this emotion just pouring into the carpet...

I did get up of course after a while, I can't remember what I said exactly but his response was again something that seemed really negative to me, I fled to the bedroom and sobbed more, desperate; he followed, and eventually, finally, he took me in his arms and spoke soothingly to me.

I told him he has to put his arms around me tenderly and check how I am at least once a day from now on, and he has to look me in the eye. And again I tried to talk with him about how he expresses his swallowed emotions as anger, anger at everything, at the world and, oh so much, at me. Over recent months, this has made me so angry at him, so angry all the time. Since I learnt I have cancer - only a few weeks now - I work really hard not to be angry, not to respond in kind, not to get wound up. Keep him calm to keep me calm.

I encouraged him to seek support from others, to allow himself to externalise his emotions, because otherwise I'm afraid he'll crack up completely. He said he will be there for me, he will not crack up for as long as I need him.

He wondered again if it is he who has sparked this cancer...

And I wouldn't say so to him, but sometimes I think he's right.

Finally I was able to cry on his shoulder... I cried for a long time. And he asked my why I was crying like that.

Is it me?

First post

2009-10-17T20:58:00.000+02:00

Just created the blog, just setting it up... before I start blogging, I am going to eat dinner!