Happy bloody new year

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

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

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

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

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

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

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

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

Christmas and all that jazz

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

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

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

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

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

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

Stitches and scars

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

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

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

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

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

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

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

Such progress!

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

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

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

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

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

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

I'm so happy!

My busy schedule...

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

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

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

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

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

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

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

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

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

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

Answers to questions

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

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

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

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

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

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

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

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

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

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

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

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


There! Rachel all catered for!

Paperwork paperwork and inefficiency

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

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

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

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

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

So must get to see the doctor.

The goo tube, weight, nutrition

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

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

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

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

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

Not blogging am I

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

Oh and by the way

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

Oh how goomusing

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

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

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

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

Maybe I can start practising projectile vomit?

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

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

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

Corn Goddess

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

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

And here's one of the fun ones

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

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

copyright Sian Cooper 2006

Keep smiling!

Tired... but things move on

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

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

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

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

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

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

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

Look it's me

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

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

Thanks to all fr the cards good wishes etc xxxxx

Useful fact

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

The husband sits up and begs.

The wife rolls over and plays dead.
_____________________________________________________________

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

Oh and - thank you

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

Hugs to everyone.

Did I confuse everyone?

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

You will be relieved to know the lacy ones won.

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

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

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

Where was I?

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

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

Oh ha ha Steve

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

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

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

New motto: A Magnum a Day Keeps the Cancer Away

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

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

Count down

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

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

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

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

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

Trouble making comments?

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

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

xx

Staged

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

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

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

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

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

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

Next stage

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

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

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

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

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

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

What's the story?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It does not cross the median.

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

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

No bone lesions (also VERY GOOD NEWS).'

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

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

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

Cats and alcohol

Oh, and cigarettes.

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

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

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

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

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

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



Fizz first night deciding she likes it here...

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

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

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



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



and bingo.

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

Where was I? Oh yes -

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Discovery days

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

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

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

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

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

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

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

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

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

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

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

Is it me?

First post

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