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!