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.
November 23, 2010
September 21, 2010
'bout time too eh
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 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'.
May 6, 2010
Well, it's been a while... GOOD news and somewhat less good news, and friends
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.
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.
April 8, 2010
A wee update
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.
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.
March 11, 2010
Booooooorrrrrrrrrrrrrrrrred
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.
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.
March 8, 2010
More snowwwww and holidays
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!!
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
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
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
February 25, 2010
Feeling a little better
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.
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.
February 21, 2010
Bright and cheerful eh
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.
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.
February 7, 2010
Comments - not working??
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
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???
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???
February 5, 2010
As Kat said... Nearly there!
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.
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.
January 24, 2010
Beans
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).
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).
January 23, 2010
Choccccccciiieeeeees!
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.
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.
January 18, 2010
To descend gently into Morpheus' arms...
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.
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.
January 16, 2010
What to say
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.
So yes, I'm feeling really down, and when I want to cry Lionel runs away (literally). I want my mummy.
January 7, 2010
OK I'm safe and apologies to them :)
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!
Three cheers for everything!
I'm bloody FURIOUS!
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...
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...
January 6, 2010
What a GOOD day!
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.
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.
January 5, 2010
An incident from the past
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
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
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.
January 4, 2010
Followers and comments - still probs!
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?
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...)
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.
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.
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