I’m a 55-year-old married Englishman living in Switzerland. I have 2 children & 3 stepchildren.
Recently I was diagnosed with cancer of the tongue, my GP said it was normally caused by 2 things, smoking and/or drinking. With me it was smoking as I’d given up the booze 10 years ago but I still smoked about 20 a day. That said I have been reading a book called Anti Cancer written by David Servan-Schreiber MD, PhD & in this book the author says that cancer is in all of us & can reside in us for 5 – 40 years before rearing its ugly head. This book was recommended to my wife by a colleague at her place of work. I decided to download it to read on my wife’s Kindle & my tablet.
I was sent to a specialist by my GP who did a biopsy on what I thought was a mouth ulcer but turned out to be a malignant tumour under my tongue. (Before going to the specialist I had to take what my GP called vitamin K to thicken my blood up as I take rat-poison due to 2 pulmonary embolisms in 2008 & 2010. Then back to him to check my INR again.) I was then ordered to go to the university hospital here in Zurich (USZ) for further tests. It was here they confirmed it after more tests, mainly an endoscopy. Shortly afterwards they carried out a pan-endoscopy on me where I was put under for the duration of the operation & MRI, CT scans. Everything was explained to me in detail about the operation & the effects it would have on me short-term. Long-term effects would be explained over a period of time. Before I go any further I would like to praise the staff at the university hospital here in Zurich for being there for me. They were all fantastic & I mean from the top surgeon right along to the cleaning people. I struck up a great rapport with the hotel/catering department while I could eat that is.
I was lucky as it was caught early, mine was stage 1 bordering 2.
A week before I had to start self-injecting with Fragmin – Heparin so that my INR was correct for the operation. I say self-injecting that’s not quite true as I couldn’t do it, my wife did it for me. I was sent into hospital on 3 August 2012 for more tests with the operation scheduled for 6 August 2012. They were going to cut out half of my tongue, cut out some of my lymph nodes, replace the missing part of my tongue with a flap from my wrist.. The operation was to last 9 hours & was to be performed by the chief surgeon (head/neck from ENT) & other surgeons also from ENT. This was called a hemiglossectomy, neck dissection & radial flap.
I don’t remember much of Monday or Tuesday because I was in intensive to start with, what I do remember is asking the nurse to put suction into my mouth & more painkillers please. Most of this was done with signs or a pen & pad as my speech was pretty bad. I also remember what felt like a punch in the stomach & suddenly being sick everywhere & apologising afterwards 🙂 They checked my tongue, hereinafter called the flap, every hour after the operation for the first 12 hours, then every 2 hours for the next 12 hours, then every 4 hours for the next 12 hours. After that they let me sleep, sleep never came though as shortly after the operation I was violently sick & couldn’t breathe properly. This had a negative effect on me for the first 4 nights.
I’d arranged with my wife before going in for her to notify my family & friends with a quick e-mail as soon as she got the call from the surgeon. Yep, the surgeon called her personally, that is what I call service.
By Wednesday evening I was back in my room & was able to send out my own updates. Patients have free Wi-Fi access at the hospital. I even downloaded a home design program still thinking of a house in France 🙂 I even managed to get a couple of rooms designed for when my sister & brother-in-law visited all the way from Sibros/Roumengoux France.
My lymph nodes were removed by slitting both sides of my neck, cutting them out & then stapling my neck back together again. I looked like Frankenstein’s monster 🙂 These staples we’re pulled out after a few days. Unfortunately one of my nerves was cut through & I have no feeling in my right lower ear so I will have to be careful in winter that it doesn’t get frozen & drop off 🙂
The neck dissection was a different procedure to avoid me getting turkey neck, both sides of my neck were cut open leaving a gap in the middle above my Adam’s Apple. The other procedure is to cut across the throat & lift the skin up like a helmet visor but this would leave an unsightly bulbous thing there like a turkey has got.
Translation of operational procedure
I was cut on both sides for the neck dissection one surgeon on each side, wow! they cut the infected piece of tongue out, with a safety margin of 2mm. One surgeon then cut the lump out of my forearm/wrist with veins. Once they had finished the neck dissection levels I-III? the head surgeon then sewed the flap to what was left of my tongue & tried to also sew it to my mucous membrane but this didn’t work as the stitches kept coming out so he decided to sew it to the teeth necks? Then everything was micro-vascular anastomised. This apparently sorts out the flow of blood to my flap, there’s mention of the lingual vein & jugular vein. So I think these were connected to my flap.
When I was able to get out of bed & walk around, they encouraged it from the second day after the operation, I had to weigh myself. I had put on about 5 kilos during the operation, I was puffed up as well. This was due to all the liquids they pumped into me over the 9 hours. One of the doctors gave me some tablets to help get rid of all the excess liquid in my body. I remember the first night very well, up & down like a yo-yo going to the loo. I called these tablets pee-pills. Within 3 days of these pee-pills I was no longer puffy & my weight had gone down.
I was visited every day by the surgeon & his team except at weekends when it was a senior doctor. I was in excellent hands at this hospital, never once did I worry about anything, everything was explained to me in detail, I was also given statistics & all sorts of information.
Before all this kicked off we were looking to buy a holiday house in France, it of course had to be put on hold but the thought of this, the support of my close family, work colleagues & the care given to me at the hospital got me through, not to mention a huge dose of humour & a positive attitude.
I spent 8 days with a feeding tube up my nostril & down my throat, it was not comfortable but it was keeping me alive with the slurry it was pumping into me. I took nothing by mouth for those 8 days, everything from water to food to medication was pumped into me through various IV tubes. Until 11 August! when after having been given a sleeping pill I had a nightmare & pulled my drips out of my arm. Because of my thin veins the doctors decided I would have to be under for them to put a new drip in me. The problem was the date, it was the street parade in Zurich & all anaesthetists were in A & E. I had finally escaped from the needles in my arm 🙂
After that night everything went through my feeding tube, if the nurse forgot to remove the air from the syringe it was fun & games with me belching 🙂
I was sent for tests (X-Rays) to make sure there were no holes after the operation & was given some stuff to drink & then some water to rinse my mouth out, water had never tasted so good. It was wonderful. After that it could only get better.
After 10 days I left the hospital to be at home, I could have gone to a convalescence home but decided against it. Being at home would be better for my recovery, I would have to do things for myself. My wife was at home & so was the dog, I’m not comparing my wife with the dog, it’s more a feeling of being at home. Someone said after leaving hospital I would maybe suffer from Stockholm syndrome. I thought that was a weird things but the more I thought about it the more I realised what was meant. Not that the hospital had kidnapped me 🙂 far from it. I had come to rely on these people to such an extent how could I manage without them. As it happens pretty easily 🙂 I made sure my jailers/torturers were rewarded, I gave the ward sisters plenty of chocolates, filled out the questionnaire positively & sent an e-mail to the top of the department praising them. I also gave the doctors plenty of chocolates as well. It was my way of saying thank you. I know they were just doing their jobs but it’s the way you do your job that counts.
My dietician gave me various tips on what I should eat, being an ex chef I also wrote a lot of menus after speaking to the dietician. I was to avoid salads, veg & anything low in calories & go for chocolate creams, chocolate mousse, full cream milk in fact anything that would help me gain weight. I was going to need it for my radiotherapy.
I went back into hospital for my skin graft operation. The took a thin layer of skin off my leg with what looked like a vegetable peeler & stapled it on to my wrist. Unfortunately the skin graft became infected & so did my leg. My wrist/forearm is still recovering as the surgeon decided it might be best this way & I agreed with him whole-heartedly as the worst thing about the skin graft was the constant seeping from my leg. I had to wrap it up in towels before going to bed, every day I had to patch it up as it sprung a leak somewhere else.
This from 22/10/2012.
Slowly but surely getting smaller, this from 15/10/2012, still looks weird though 🙂
In the meantime the dentist needed to sort out my teeth, there was talk of multiple teeth pulling & I had been warned by the hospital that the university dentistry department was a bit gung-ho about pulling teeth out. I was lucky they only wanted to pull one out 🙂
Once my gum had healed or in my case nearly healed, they decided to start irradiation. They had already postponed it once due to concerns over my gums. It all started on 24th September 2012. I was apprehensive at first, in fact at one stage downright scared but as my wife said these things have to be gone through. If I hadn’t & the cancer returned in a few years I would have regretted it big time.
I went to Radio Oncology in the hospital for a chat with the senior oncologist there. They wanted to try something new on me, brachytherapy but they didn’t have the equipment there so they would “outsource” me 🙂 to a clinic 50 km away. Lots of discussions later only one I believe involving me my surgeon said no. The reason for this was that my flap was very new & this hadn’t been tried out with a new flap before at this clinic & they couldn’t give him a good enough guarantee the flap would survive.
Back to RO at USZ (and more praise for everybody in this part of the hospital) for another chat about my impending torture & the making of the mask. I had no idea what this meant. I soon found out when I went along the corridor & was called into the torture chamber. They laid me out on the slab, heated some malleable plastic in hot water & moulded it to my face as tight as possible. It was a bit scary to say the least. I did have a mouth piece & a big gap for my nose & mouth but still it wasn’t a pleasant experience. I would have to wear this every time I was zapped in the other torture chamber.
Day one of zapping over, it wasn’t as bad as I had imagined, how little I knew about what was about to hit me. Slowly but surely it was set to get worse. On Tuesday each week I was set for a double dose of fun, chemo & radio. My first encounter with chemo was not a happy one. They had problems with my veins again, there was even talk of inserting a port into my chest for easy access to my blood vessels. After the third attempt they finally got the needle into my arm & starting pumping away. So far so good apart from me not feeling too good. Two days later they tested me for creatinine in my kidneys & found it to be way too high even though I’d followed instructions to drink loads of water. They decided they would try Erbitux instead as it doesn’t “attack” the kidneys
The oncologists had a discussion about this & decided to try to get a port fitted only to find there was no space or the surgeons who did this type of operation were fully booked, then they looked at farming me out to another hospital/clinic but then decided as chemo was only precautionary they would stop it. That was the end of my flirt with chemo I’m glad to say. I did manage to put on about 3 kilos after the first & only session of chemo, so I was back on pee-pills again.
About a month after the operation I tried solids, I managed to eat a slice of bread, before that I’d been on puréed food. Everything went through the liquidiser & I mean everything 🙂 I tried various “recipes” & didn’t much like any of them but I persevered for a long as possible. Then came the breakthrough, I knew I wouldn’t have much time because as soon as the zapping started I would be back on liquids again. The last thing I ate before my taste buds disappeared was a pizza. I was losing a bit weight but it wasn’t too bad. My dietician came to see me when I was hooked up the one & only time to chemo after the nurses had played darts with my arm 🙂 It was here she recommended what I now call slurry, they are power drinks (food supplements?) in different flavours. One bottle of 125 ml contains about 400 calories I have been on these for a while now. I eat or slurp some chocolate creams down as well whenever possible.
The good thing about these things is they will be delivered the next day. My dietician asked me what flavours I would like, I gave her a list & the very next day I had a box at home waiting for me.
In the next 6.5 weeks I would spend every Monday to Friday at the hospital as an outpatient being zapped, seeing my surgeon, seeing the dentist & from time to time seeing my GP. In this time I had one day off due to maintenance on the machines but they gave me a double dose the day before. Once in the morning & once in the afternoon.
The worst things about the irradiation is firstly losing my taste buds, secondly losing my appetite & thirdly the tiredness. One positive thing is losing weight although the oncologist did warn me that if I lost too much they would bring me back in & force feed me with a tube. I’ve had one of those & I didn’t want another one.
Weeks 1 & 2 I didn’t really notice much apart from tiredness. In the second week I did have some blotches on my cheeks after managing to shave off my stubble. It was where they had been zapping me, strangely enough this had disappeared by the next shave.
Week 3 saw the lesions start to get a bit bigger & more painful in my mouth, this apparently comes from the zapping according to the dentist. Mouth wash used a lot now. Now starting to feel the “sunburn” on both sides of my tongue.
Week 4 or was it the end of week 3 I had an appointment with the surgeon for my arm wound. He needed to check it out again. I told him I had hairs growing on my tongue He had warned me this would be the case at the start of it all. “Sunburn” still making itself known. Very few solids now taken by mouth, lots of liquids.
Week 5 saw my beard/stubble falling out where they were zapping me, I try to keep my beard as short as possible but now am dry shaving once a week to get rid of the tufts Mouth numbing spray used whenever I want to eat something solid, this is not very often. Hairs on my tongue have disappeared, the surgeon also told me this because the saliva will kill them off. “Sunburn” still hasn’t reached its red as a beetroot stage yet where it really hurts.
Week 6 lesions seem to be multiplying in my mouth. Now on morphine drops & later in the week tablets, codeine/paracetamol tablets dropped. The “sunburn” is working it’s way up to the peak. I also need to take intergalactic laxatives as morphine does strange things 🙂
Week 6.5 the first day the pain was excruciating, I made sure I was pumped up before going to the hospital. This is when it will start to get really painful. As someone once said to me, if I remember rightly it was a Petty Officer, it’s only pain it will soon go away. I thought at the time that wasn’t a very nice thing to say, I was 16 years old. Now whenever I’m in pain I think of him & I repeat it to myself.
Week 6.5, last day, the pain is unbelievable but still bearable as long as I’m pumped up with morphine. The only “problem” with morphine is it’s makes one so tired. I got up this morning at 07:45 & was back in bed by 10:00 but I did get some e-mails off & some housework done 🙂 It was a long day as I was also at the dental hygienist so she could poke about in my mouth. Amazingly I had my blood taken today to check for various things & the nice nurse hit the target first time 🙂 I was dreading it as I thought the torture was finally over.
I got a nice card from the torturers in RO, it was a card wishing me all the best for the future with an executioner on it & a cartoon about what a torturer does after he knocks off with thumbscrews depicted on it 🙂 Now that is what I call a really good sense of humour 🙂
My morphine dose has been upped from 10mg mornings & evenings to 20mg mornings & evenings. I should still take my morphine drops & Novalgin alongside the pills. I needed some more drops yesterday so went into my local chemist who I thought would stock everything, it’s certainly big enough. They didn’t have any! From now on it will be the city chemists. I think I overdosed on the intergalactic laxatives, will have to knock them on the head for a while.
Just got back from the city chemist with my morphine & have also ordered slurry for the next 2 weeks. I really hope I’ve over-ordered, I’m an optimist 🙂
Day 1 post zapping
Well, what can I say, everybody was right. The pain is bad but it’s to be expected as it’s only the first day. I suppose I expected instant healing 🙂
Day 2 post irradiation
The pain is worse today than it ever has been. First port of call today was the medicine box in the kitchen to pop some pills & drops. Normally first port of call is to put the kettle on. All of a sudden I’ve got a raging thirst on, this has got to be good news.
Back from the hospital, apparently my creatinine levels are too high again so I must try to drink more fluids. I have some more appointments coming up now. All good fun this 🙂
Day 3 post oral thermonuclear warfare
Hit the meds box again this morning before doing anything else. According to the oncologist one of my lesions is already on the mend, it doesn’t feel like it! I got a questionnaire from Radio Oncology to fill out. As usual all my comments will be positive. A big box of slurry arrived yesterday special delivery. I had better start getting some of that down my throat. I have just stood on the scales & have lost more weight 🙂
Day 4 post oral destruction
It hurts big time this morning, normally the dog wakes me up but today it was the pain. I didn’t sleep too well last night, I had some weird dreams, maybe they were drug induced 🙂 Or maybe it was because I slept for 3 hours during the day? I took every med available in the kitchen. I had problems talking, this will definitely please some people 🙂 Don’t worry I’ll be back talking ten to the dozen again soon. I think I will be in a drugged up stupor most of the day 🙂 Also back on the laxatives now, thought it might be about time to see if I could get the dosage right 🙂
Day 5 post oral Armageddon
Pain woke me up early, then dog woke me up a bit later wanting to go out. Had to go back to bed after getting up at 08:00, it’s now 11:00. The extra sleep did me good after taking my morphine 🙂 I have now had 2 nights of bad sleep but as least I can sleep during the day. First one or two swallows of the day hurt, am waking up more & more with a dry throat, I was told it’s because I have my mouth open during sleep & probably because I snore 🙂 Someone at the hospital also said something about sleeping in fresh air could cause this. We do have the window wide open at night so I will have to accept this as we cannot sleep without fresh air. The colder the bedroom is the better.
Day 6 post metastases eradication
Had a better sleep last night but still not up to my usual standards. Straight to the medicine box this morning to “dope” myself up 🙂 I’m now drinking most liquids (my food) through a straw as it doesn’t hurt so much. The right side of my tongue, the flap, seems to be getting better as the burning sensation is no longer there. The left side, what’s left of my tongue, is still the same. Lots of pain. I think things are improving slightly though.
Day 7 post tumour annihilation
So-so sleep last night. I forgot to take my morphine & Novalgin drops last night but the pain didn’t stop me sleeping. Maybe I can now cut down a bit on the dope? I do feel wobbly on the old pins at the moment 🙂 3 appointments today, 2 at the hospital, surgeon & oncologist. I also have to see my GP about my INR & to check my rat-poison dosage. It seems like I’ve got something stuck to the bottom part of my flap this morning. I will have to speak to the surgeon about that.
Day 8 post carcinoma extermination
Day of appointments over, 1st one was a waste of time 2nd more positive & 3rd even better. Need to find a new GP, my oncologist will speak to a renal specialist about my high (ish) level of creatinine but otherwise has pronounced herself happy with my progress. My surgeon has checked out my tongue & forearm & says there is a little bit of swelling/inflammation still on my tongue but it’s looking good, my forearm is looking good (well, it’s ugly really 🙂 but I don’t care because I’m alive) & should be healed by middle of December & I should no longer have to dress it every couple of days. My post operation check-ups will start in January. Not the best of sleeps last night as I was woken up by the dog panting in my face but he settled down afterwards. Also had to take some morphine drops as the pain was pretty intense on the left side of my tongue, the real bit.
Day 9 post neoplasm obliteration
Good sleep last night, kept my dope dosage to a minimum yesterday 🙂 & I’ll try the same today, the pain is still there but bearable. I couldn’t have slept without dope though. The surgeon says I can go back to work 50% in January if things carry on this way so there is light at the end of the tunnel. I’ll definitely need to get my work hat back on before that otherwise I’ll be lost!
Day 10 post oral apocalypse
So-so sleep last night. Good news, I managed to get some solids down me last night. Fish pie, it was difficult chewing but it will come back with a bit of practice. This also could mean my appetite is slowly coming back. Five minutes later I had a chronic stomach ache, obviously there was a lack on inter-body communication between my brain & my stomach 🙂 Not talking to each other! Another bit of good news, I am dropping the dosage of my morphine drops to twice a day from 4 times a day whenever I can.
Day 11 post malicious nodule extirpation
Had a very good sleep last night but of course it was drug induced & I still feel tired. I have managed to cut down on the morphine drops but am religiously taking the morphine tablets & Novalgin drops as prescribed. I didn’t feel like solids yesterday so stuck to my slurry which I have to say is starting to taste of something 🙂 I’m not sure what just yet but there is definitely something there.
Day 12 post RT
I slept very well, about 10 hours, the pain is not too bad this morning, I will try to go without dope this morning 🙂 I had a cup of Bovril (beef tea/consommé) & I enjoyed it so that’s a step forward. Also had some ice cream but that stung my sunburn, either that, the chocolate sauce or the cream.
Day 13 unlucky for some
I feel tired but better as I only took about a quarter of my normal dope yesterday. I stood on the scales this morning & was surprised that my weight is stable as I have lost about 18 – 19 kilos since the beginning. I hope weight loss stays like this. Considering I’m only eating slurry & this odd solid, if you can call raspberry jelly solid 🙂 this is an achievement. I will try again with reduced dope to see how I get on.
Day 14 post torture & cold turkey
Bad night, I didn’t take any dope yesterday whatsoever & I’m now suffering cold turkey for my troubles. I had been warned about morphine withdrawal by my sister-in-law but didn’t quite realise how bad it might be. According to http://en.wikipedia.org/wiki/Morphine#Withdrawal I’m at stage IV, this is something I will have to work through now, it’s not pleasant reading the information on the website but being an optimist I don’t think it will as bad as me crawling into a foetal position as in stage V as I was only on smallish doses of the stuff. I will know in about 12 – 24 hours of my fate 🙂
Day 15 post torture & not so cold turkey
Another setback. Just as I was starting to get my appetite back I go cold turkey with the dope. I spoke to my oncologist yesterday & she recommended going back to the dope but lowering the dose each day until I’m down to nothing but doing it over a period of maybe a week, not 2 days like I did it last time. I slept badly & still don’t feel hungry I did as the oncologist said & started the dope again last night at the normal dosage. I will cut it down this evening as well. Off to the new doctor today to tell him of all my woes 🙂
Day 16 post torture & not so cold turkey
I had another bad night’s sleep. I cut down on the dope last night again only by 3 drops, I feel jittery this morning but not feeling too bad, I did have some slurry yesterday but not enough, I did have some good news & that was when drinking my vitamins & mineral mix this morning & yesterday evening drinking a hot chocolate, I actually tasted something.
New doctor asked lots of questions which is normal but I’m happy. I need to get all my medical records from the previous doctor to the new one so he knows what’s happened in the past with my health.
I realised last night in my waking periods it is now over 5 months since I gave up smoking. From day one of giving up I have not craved or had any withdrawal symptoms unlike the morphine 🙂
Day 17 Cold turkey
Bad night again even with morphine, I think the reductions are too big as I’ve got severe stomach cramps & various other ailments linked to withdrawal, none of them very nice. There is not much I can do now apart from go through it, I don’t want to start the full dosage of dope off again, anyway I couldn’t as I’ve run out of MST (morphine tablets) I think I might have to go back to bed to rest 🙂
Day 18 still cold turkey
I managed 4 hours straight sleep last night, my bodily functions are slowly get back to normal if I compare them to Thursday night Friday morning 🙂 I have to be honest I did knock the dope on the head as I refuse to stretch this torture out any longer, I want it over & done with ASAP. My emotional state is still weird, very unlike me but that’s also improving. This is apparently all part of the cold turkey anyway. Morphine is such wonderful dope 🙂
Day 19 a bit better
5 hours straight sleep last night, not bad really, it’s certainly an improvement. My appetite is showing signs of recovery as I managed my slurry, some liquidised hot-dogs in gravy & some chocolate creams last night 🙂 I did taste something so things are slowly improving there as well. I only had a few stomach cramps last night. My emotional state is also improving. I feel when walking the dog, even on a flat piece of ground I get puffed out. Going up a hill is killing, even when I was a smoker it wasn’t that bad!
Day 20 improving
Sleep was not good but I had solids yesterday for the first time in ages, well, I had a very small piece of steak I scrounged from my wife 🙂 It actually tasted of something as well, this was followed by a tin of mushroom soup, strawberry jelly, chocolate creams & a small bar of chocolate, spaced out over the afternoon & evening. Give it another week & I’ll be eating a 6 course meal 🙂 My emotional state is constantly improving, I might even say I’ve got through cold turkey now.
My weight has now stabilised. All in all from the beginning till the present day I’ve shed 20 kilos. As my surgeon said last time I saw him it was lucky I had some fat reserves otherwise I’d be as thin as a scarecrow now, a bag of bones.
This could explain a couple of things, http://www.bbc.co.uk/news/health-20463363
Day 21 cold turkey in the past I hope
I had another bad night maybe 4 hours straight sleep. No shakes/trembles etc. No stomach cramps. My emotional state is also fine. Yesterday evening I had some croissants & smoked salmon for dinner, also had slurry during the day. It was a bit of a struggle to start but I soon got used to it. I think I am probably at the stage I was 6 weeks after the operation with food. So now the only way is up 🙂 I also think my facial hair is making a comeback, where I was zapped it was as smooth as silk, now there are signs of hair, everything was a bit patchy before 🙂
Day 22 I think it is
Apart from the sleeping aspect, not a good night, up three times in 8 hours. If I could get a good night’s sleep then maybe I wouldn’t feel so tired during the day. Yesterday I spent a lot of time out & about & felt shattered when I got home then had to take the dog out an hour later. Anyway things are looking good in my cake-hole 🙂 The dental surgeon was extremely happy with things especially as it was 3 weeks after zapping & the last time I was at the hygienist was about 2 weeks ago so it meant I had been a good boy 🙂 & cleaned my teeth properly after the time before at the hygienist when she said I should get myself a softer brush & clean my teeth more thoroughly. Next time I go there I will have a different dental surgeon to check my as she has now finished her stint there & is moving on & no doubt upwards.
Day 23 it definitely is
I slept okay considering. I was only up twice during the night. I still feel tired though.
Something else my dental surgeon said yesterday & that was about having a dry mouth, I get it when during the night & also when I do something strenuous like walking fast. She says my saliva glands will get back to about 90% of normal in about a year from now. I have to say this is no big deal, it’s something I have already got used to. More difficult is “losing” food in my mouth 🙂
Day 24 a lot better
Except I slept about the same as the night before.
Everything is back to how it was now before the morphine, I am still tired of course. When doing things too fast I get out of breath, when I bend down to pick something up I still get dizzy. I did a lot of cooking yesterday hoping to kick-start my appetite, it didn’t work very well but I did eat some minced beef, left over from the lasagne I made & some fish pie, also freshly made yesterday. My forearm was “naked” the whole of yesterday & is looking really good.
I got all my medical records from my previous doctor to give to my new doctor, all the gory details of the operation were in there 🙂 I will attempt to translate as best I can & post.
Translation if you can call it that 🙂 is after the first picture, it seemed the appropriate place to put it.
Day 25 solids, sort of.
Had beef stew last night followed by chocolates creams, not quite the 6 course meal I mentioned earlier but a step in the right direction. I actually tasted the stew a little bit & the first spoonful of chocolate cream was delicious, a “blast” of chocolate in my mouth. I also managed not to lose any food in my mouth 🙂 What many people, I would assume, take for granted is the movement of the tongue during eating. I have to force mine to move from side to side when eating as I have no instinctive movement at the moment. My wife tried not moving her tongue while eating & found it very difficult.
Day 26 solids
I slept longer today as there was no aeroplane noise at 06:00 due to a lovely layer of crisp white snow, about 2cm so far & it’s still coming down.
I managed to eat a portion of veal & ham pie with crusty pastry last night for dinner, I prepared it earlier in the day. This was followed by 2 portions of chocolate cream as usual 🙂 I still drink my slurry every day just to make sure I get the calories I need. My weight has been the same now for about 3 days so I must be doing something right.
Day 27 lunch AND dinner
This is another first, my appetite is nearly back to normal. I was never a breakfast person. I haven’t had lunch & dinner for a long time. I also had 2 bottles of slurry yesterday to complement the food. The only negative thing is I think I’ve got a cold or man-flu 🙂
Day 28 as above with snack
It was a bad night last night, sleep was pretty evasive. Yesterday I ate the most I’ve eaten for a long time. I even had freshly ground pepper on some air-dried ham. Things are definitely looking up. What I have noticed with the arrival of the cold weather is I get cold very quickly, maybe that’s to do with shedding 20 kilos of excess blubber 🙂
Day 29 steak
Things are really looking up, I had a half pound, 250 grammes, organic steak, duchess potatoes & glazed carrots for dinner last night 🙂 From what I tasted it was fantastic. This was followed by the usual chocolates creams, I will have to be careful in case I start to put on weight!
5 days now with a “naked” arm, it is starting to look normal.
Back from the doctor’s, it was the usual problem with my veins, on the 3rd attempt they yielded blood. Hopefully my creatinine levels will now have normalised.
Day 30 all sorts
It is now a month since the torture & I think things have improved dramatically. I had some croissants, cheese & Marmite for lunch, yes, I was a Marmite baby 🙂 for dinner it was freshly cooked goulash & the usual chocolates creams, I think I might get withdrawal problems if I stop eating these things 🙂 I am still sleeping badly but I can live with that. I am really enjoying all this cooking again.
Day 31 big meal
I wish I could sleep properly. At least the my meals are being enjoyed now. I had a classic last night, okay, they were Swiss sausages, but bangers, mash & baked beans went down a treat followed by tiramisu 🙂 I woke up this morning hungry so have already had a slurry for breakfast. I would have preferred a bacon sandwich but we haven’t got any at the moment.
The amount of calories I’ve had over the weekend, it’s probably best if people don’t know 🙂 Needless to say my appetite has come back with a vengeance. I had lunch yesterday & an hour later I was hungry again & it wasn’t a small lunch by any means. I am now managing to eat 2 full meals a day & snacks in between. I will have to be careful otherwise I’ll be putting on weight!
Sleep is still being a bit evasive but I’m surviving on less these days. The cold is getting to me, I seem to be cold a lot. I do understand that without my 20 kilos of blubber or is that less now I’ve been eating so much 🙂 I will feel the cold more. I’m not sure if eating veggies is right for me but I have had more in the last few days than previously in a year, I’m still on my high calorie diet but it seemed right to eat spinach, carrots, butternut squash & runners along with potatoes & meat of course 🙂
Paid a visit to the dental hygienist today & she called in a maxillo-facial surgeon because I’ve got an indentation on my flap from one of my teeth. She said it would be advisable to have a piece of my flap sliced off as it is too big. My surgeon told me that it might happen as he deliberately made the flap too big. He said 6 months after the operation we can decide. It looks like I’ll need another operation & liquids for a few days afterwards. I will be seeing him in January for a check up anyway so I can let him know what they said. Had some cold cuts today with freshly ground pepper 🙂 I think the “sunburn” on my tongue has healed.
Hopefully now the “sunburn” has healed on my tongue more taste buds will come back, just in time for Christmas nosh ups 🙂 Although one oncologist said it could well be January before I have them back. I’m hoping I can get back to some kind of normality in the very near future, I still drink my slurry but it’s becoming less each week. I will be needing a few bottles in January if my surgeon decides to lop a piece off my tongue. At the moment the dentist recommends I wear my lower gum-shield at night to protect my flap.
It’s now coming up to 6 weeks since the end of my torture, this was the time given to me by my oncologist as recovery time, well 6 – 8 weeks. I still get tired & dizzy at times but that will all work out fine in the end I’m sure. I can go back to work in January at 50% I am now eating normally, I do have problems still with certain things, I can’t eat too much bread, no bad thing really 🙂 as after a second roll or slice it starts to feel very doughy in my mouth. All in all I’m still very happy with my progress.
I paid a visit (one of the many) to my place of work yesterday & took some freshly baked sultana scones in. The main reason for the visit was our departmental lunch. It was great to be with friends, as you may gather from the title I had a pizza, ham & mushroom. I had already decided on a pizza because they did thin base ones. I managed to eat most of it but towards the end the outer crust defeated me, not because I wasn’t hungry but because it was too much like hard work 🙂
I have started to gain a bit of weight, this began about 2 week ago, I have now stopped taking sugar in my cappuccinos & cutting down on sweet things as I don’t want to put on too much, Christmas is nearly hear & I’m sure I will do my best to eat a lot 🙂 I will take a break from updating the blog over the Christmas period.
Happy Christmas to everyone.
I said I wasn’t going to touch any gadgets – PCs, laptops, even phones – during the holiday period but that has now changed 🙂
I have started to put on weight after the Christmas food, not surprising really as I really have an appetite now. I did put on a kilo before Christmas ever arrived but now I have an extra 4 to contend with. I will try to avoid eating so much in the new year. I will have to cut out all of my beloved high calorie food 😦
Happy New Year to one & all
It will be my first day back at work since late July today, it will only be 50% for this month, next month who knows. I’m feeling fine about everything. My arm is practically healed up, my tongue/flap still needs time to go down swelling-wise, I still have swelling around my neck where the lymph nodes were cut out but these will all get better in time.
Second “day” of work completed, today was a bit tougher than yesterday as I got immersed in certain jobs. It will be a long time until I’m back to knowing my job inside out because so much has changed. I don’t feel too tired after 2 mornings of work, next week will be the challenge as it will be a full working week 🙂
Now completed my 5th “day” of work, now I am starting to feel tired. It’s mid-week so I have no idea how I’ll feel on Friday. Wearing a woolly hat in this cold weather is a sensible thing to do as my left ear got very cold & that means my right ear (no feeling whatsoever) must have got cold as well. I really don’t want it to drop off 🙂
I did have a little accident last week during the night, I tripped over the dog & went headlong into the edge of a door, I bled like a stuck pig. It was about a 5cm gash. Luckily my blood thinners weren’t working properly & my blood was thicker than usual. Verification from the doctor yesterday after checking my INR level. I’ve also got a very hard head 🙂
1st week over & done with. I felt extremely tired on Friday after a full week albeit it only part-time. Tomorrow I have an important appointment with my surgeon. He will decide how much of my flap he will slice off, braised tongue anyone? 🙂 Seriously though it is really starting to irritate me by getting in the way.
Saturday is another important appointment, a full body MRI, as long as they don’t bolt me down like the last MRI I should be fine. It does last about 40 minutes so maybe I will need a sedative.
Went the hospital yesterday for my appointment, I thought I would go earlier as I needed to get a disclaimer form from neurology for my scan. After a bit of confusion with the date, I was due on Saturday, they told me to wait & they would see if they could fit me in. About an hour later I was finished. I only had to wait 30 minutes & had 30 minutes in the tunnel, it turned out to be only my head/neck area & I didn’t need any sedatives. I kept my eyes tightly closed with the cage on my face & it was over shortly afterwards. I was glad to get out as not even the music in my headphones could dampen the pneumatic drill going off!
Then it was off to see my surgeon, I got there about 30 minutes early, he saw me 20 minutes later & was happy with my tongue/flap although he said my arm would never win a beauty contest 🙂 It was decided I should speak to the dental surgeon in February as apparently my last lower back tooth is the one trying to chew on my flap. He/she can decide what to do. I also had some photos taken so they can plaster my mug shot with tongue/flap on some kind of training papers.
I am due back to work 75% next month but if it’s too much I will need to go back to the hospital to see the surgeon & he will put me back to 50% If yesterday was anything to go by, I left home at 07:00 & got back at 17:30, I might have a problem.
Next MRI will be in July this year then the next one will be in April 2014 after that October 2015. My surgeon has seen the results but not the official report from oncology he says he can’t see anything but we have to wait for oncology to come back with their report.
I’ve heard nothing back from oncology so that is excellent news. Now coming to the end of my 50% stint at work & have to say it’s tiring. I have started to go to bed around 21:00 now each evening because I’m so tired. As of tomorrow it will be 75% at work. I will have to see how it goes.
I now seem to be suffering from man-flu. For those of you who don’t know it, it only affects men & is a terrible illness. Also known as the common cold 🙂
I have been back at work now for 2 weeks at 75% & I have to say it is very draining. I seem to be permanently tired & lethargic. I find myself staring into space for no reason 🙂 I will have to make an appointment with my surgeon again soon. I will see what he says. My man-flu is still lurking in the background, but now it’s only a tickly cough.
I have had my appointment with the surgeon, I have been put back to 50% until my next appointment on 12/03/2013 he will assess me again when he checks my flap/tongue. I’m glad I tried at 75% but it was tough. I had booked a week’s holiday for beginning March as I thought at 75% I would definitely need a break to recover. I will have to see how I feel next week.
I am off for a week to recover from the time I was at work. This is part of my holiday allowance for the year. I also took some over from last year as I was not able to go anywhere. My tiredness is still with me but it’s not surprising. I’m hoping I will be able to go back to work refreshed after this week off.
I am now back at work 80% contractually, today was my first day of doing 8 hours. I feel very tired but I expected that & I think I just need to get back into a routine.
I have now been back 3 weeks & a lot has changed at my place of work. After working 4 full days I am ready to collapse & really look forward to the weekends. I think, maybe, after a while the tiredness will lessen & I will feel like doing more on my day off.
Oh the joys of having a day off mid-week (ish) last week as well 🙂 at work again tomorrow though.
My concentration is not what it used to be, I find myself staring blankly at things & not see things even as I look at them. No doubt this will get better in time as well. Just lately I seem to be suffering from nosebleeds for no reason, about 2 a month in the last few months. That was something I never had before.
Went to see my surgeon on Friday. He is happy with my progress. He has organised another MRI for July. It seems my nosebleeds for now have stopped. Maybe it was because we went to Jersey on holiday 🙂 It is a beautiful island, it is peaceful & the pace of life there is to be recommended.
I still suffer from tiredness at work but the day off after 4 days of working really does help me.
I have received my marching orders for the MRI, 13/07/2013 I have to fill out the usual questionnaire, the only thing I have an issue with is telling them my weight, it seems to have gone up somewhat 🙂 I spoke too soon about my nosebleeds, I had another one the other night for no apparent reason.
Something new seems to be happening to me now. My cheek/jaw/neck area on my flap side get something akin to cramp every so often. It is sometimes extremely painful but only ever lasts a minute or so. Another thing to tell my doctors about if I remember 🙂 That’s another thing as well, my memory, maybe it’s just me getting older?
Well, I am definitely getting older as it’s my birthday very soon. it will also be the anniversary of me giving up the weed & next month on 6th August exactly 1 year on from my operation. Time seems to have flown.
I still feel tired after a day’s work but that is something I have to get used to. My nosebleeds are still with me & so is the severe cramp in my face. I am just accepting it even though it’s painful. No point in getting upset about it. I also seem to be biting my flap sometimes when eating, it doesn’t hurt it’s just a very weird feeling. Biting my tongue, which happens a lot is extremely painful though.
I didn’t hear from my surgeon so it was positive.
it is now one year since my operation, today one year ago I came under the knife or probably knives. I ,of course, didn’t know anything about it for a long time afterwards. Needless to say it was a very important day & a real life changer.
Now back from a very busy but relaxing holiday in the Auvergne in France, we have bought a small house there but that is another story altogether. I noticed that with my lymphatic drainage coupled with a bit of acupuncture my facial cramp is lessening. I especially noticed it during the holiday when I only experienced it very briefly & it wasn’t too painful. It could also have been that I wasn’t stressed out from work 🙂 I am back to 80% at work again after doing 3 weeks at 100% due to a colleague’s holidays.
After more lymphatic drainage & acupuncture things are looking okay, I still get the feeling of slight cramp but I know how to react to it now to make it disappear. I have only one more appointment with the university dentist then “I’m on my own” so to speak. The last appointment will be a saliva test & more dental hygiene.
A year ago next week or near enough I started my 6.5 weeks of RT. I would not want to go through that again, I think my doses of radio were small compared to some people!
I had an appointment with my surgeon on Tuesday after I’d missed the previous one 2 weeks previously. I have no idea why I missed it. I was working a lot & probably not thinking too much 🙂 Anyway the upshot of it is he is very happy with my progress & general mouth cleanliness as I’d had problems in the past. He said it is as good as it will get. I have bought a mouth spray/jet that I use every morning & evening. I cannot move my tongue/flap around my mouth as I used to. As I have now over a year under my belt my appointments are now every 3 months. The surgeon also told me what sort of tools he used, I was still under the impression they used standard scalpels, not any more. They use laser scalpels, mono-polars & some other name I can’t remember.
Exactly a year ago today I finished my radio therapy & started on my recovery. This was the last time I was to be “pampered” at the hospital. Looking back I’m surprised how I managed to get through it all but I suppose my mind was on getting better & my desire to lead a normal live was extremely keen, well, as normal as possible of course 🙂
I have had issues with my arms & neck of late so my GP referred me to a neurologist, my neck has been stiff for a couple of weeks now, my arms have been extremely weak. It seems that in my left arm I have tennis elbow but my right arm it’s something different. The good news is it is not neurological, more orthopaedic. He carried out a lot of tests, the worst being electric shock treatment 🙂 A few volts, it was a bit like touching an electric fence. I also had a very fine needle stuck into my bicep & my hand, I was surprised that it didn’t really hurt. He recommends physio for my neck. He thinks it could well be a result of my operation & the torture thereafter 🙂
Physio sessions are now sorted, well the first 2 anyway. I start in the new year as it was too close to Christmas for any appointments. The official diagnosis from the neurologist is irritation of the plexus brachialis right side due to neck dissection. I am hoping the physio will be able to at least alleviate some of the pain. Pain in the neck is an apt description 🙂 in both senses, annoying & painful.
Merry Christmas & a Happy New Year to everybody.
Back to reality again after spending some relaxing days in the Auvergne. It was extremely mild for the time of year & I could forget all my aches & pains for a while. I have started my physio. It was strange with an extremely hot pad in my back for about 30 minutes. I was just resting with it stuck to my back or so it felt. Then came the pushing & squeezing. I definitely felt better after that. Unfortunately my aches & pains were back this morning but I can’t expect miracles after just one session 🙂
I had a hospital appointment yesterday which took longer than anticipated. This was due to my surgeon finding something unusual on the left side of my neck. He sent me for a fine-needle aspiration biopsy. I was stabbed twice with a needle & it was wiggled around while it was in there. The results won’t be in for a couple of days. My surgeon says there is nothing to worry about & said it’s best to be safe than sorry. If it’s bad news he will call me ASAP if i don’t hear anything then I’m in the clear.
It was a pretty edgy weekend with all the uncertainty of not knowing what is happening. Strangely this is affecting me worse than my first diagnosis. I was pretty flippant about it all to start with not really understanding anything or maybe I should say not wanting to understand anything 🙂 The reality & enormity have hit me.
Still no news, as they say no news is good news, I hope it is. Also fighting a battle with my new ISP, they really are pretty useless, they are saying they have to rely on another carrier to get the work done, well that doesn’t help me. They should have got their act in gear earlier. More therapy this evening, this time with stretching exercises. I really hope this can alleviate the pain somewhat.
Just called the hospital for a new appointment, also asked about my results. Good news, no evidence of carcinoma cells found. I did misunderstand at first because we were speaking German & I’m in an open plan office so it was difficult to hear. I thought she said they had found something. Now our plans can go ahead 🙂 they were temporarily on hold because of this.
I received more marching orders through the post yesterday, I should report on 05/04/2014 at 11:10 for another MRI, I have a few concerns about this because of what has gone before but I’m pretty upbeat about it. On a different note, I seem to have caught a night-time cough & sore throat. The weird thing is it starts off about 21:00 with a hoarse voice & then turns into a sore throat & tickly cough. In the morning my voice is also hoarse but after a cup of tea it’s fine again. If it was just in the morning I could understand because of snoring, I have to say, according to my wife, I don’t snore any more since the operation 🙂
The result of my visits to physio don’t seem to have worked, I still have problems with my neck & arms. I am carrying on doing the exercises as I did during therapy. I will have to tell my GP as he was the one that referred me. The good news is my sore throat & tickly cough has finally disappeared.
I spoke too soon, I have a bad throat again, when I swallow & yawn. It’s like it’s stretching the skin & hurting. It is difficult to know if this is related to my illness or not. All my recent afflictions seem to have never really materialised into something like a heavy cold or flu, it never seems to come to a head. It would be very easy to blame my illness on all these things but is it just part of life, everybody gets a cold from time to time, a sore throat as well. I have a doctor’s appointment next week so I can ask him some questions.
I have now started with acupuncture for my stiff neck & aching arms, the first time was not as bad as I’d feared 🙂 the pain was pretty non-existent. After having 6 needles stuck in my hands & arms the stiffness & tension nearly disappeared after 5 minutes, then I had another needle stuck in my neck, after a further 5 minutes the tension was gone. It didn’t last long, only till I got home. I have another session next week so hopefully it will improve a bit each time.
I’ve had a few sessions now & it does seem to be helping, what doesn’t help is me forgetting to go! I have so far missed two appointments because I have forgotten to either add it as a reminder to my phone and/or forgotten to add it to the calendar at home. Twice in two months is not good 🙂 It’s not just my appointments I forget, it’s a whole host of other things. The question is: would this have happened to me anyway due to age or is it a legacy of my cancer/treatment or a bit of both?
After a visit to my GP for my INR test & talking to him about my health & my emotions he diagnosed me as having depression. I was honest to him when I was talking. He said it is possibly a delayed reaction to everything I’ve been through but it could be something else or a combination of things going on in my life. He said that 1 in 3 people will experience some form of depression in their lifetime. I also haven’t been sleeping well so he prescribed some anti-depressants with the side effect of causing sleepiness but I might wake up with hangover like symptoms to start with. As to my memory, well the acupuncturist decided to stick some needles in my bald patch last time I was there 🙂 It won’t have instant results or maybe any at all but as long as I don’t forget my appointments it will have helped.
Back from my latest visit to the hospital, the surgeon is extremely happy with my tongue, not so with how my wrist looks, it might not look very nice but it works, ditto my flap/tongue & that’s the most important thing. Because of the length of time now from my operation, my appointments are only every 3 months, 2 years after my radio torture he says I can celebrate with some champagne as he is sure the tumour won’t come back. Apparently they tend to come back within 24 months. After November 2014 my appointments will then be every 6 months.
Well, back from holiday & while there I stopped my tablets & I was fine. I started taking them again 4 days before coming back. Maybe I could go on permanent holiday & I wouldn’t need anti-depressants 🙂
It seems my throat cramps are becoming more & more frequent, especially after yawning, I have another GPs appointment this coming Friday so will mention it to him. I have also suffered from a weird pain going from the base of my neck through to my left upper arm, I say weird because it is a really strange type of pain, one I have never really experienced before. I haven’t done any heavy lifting or strained it as far as I know. Dragging a wheelie bag after our short break in Norwich doesn’t count. Norwich by the way, for anybody with a negative attitude towards it is a wonderful friendly city. We had a fantastic time there.
My nose bleeds have started again, really annoying. They can happen anywhere at anytime. My weird pain has disappeared now it’s just my neck still. The cramps are still there but I think if I drink more liquids, water mainly, not tea or coffee it might just help. I saw my surgeon a couple of weeks ago & he is still happy with my progress, we have now moved to appointments every 6 months. Not long now till I can celebrate 2 years since the radio torture finished 🙂
I’m only 20 days late with my second anniversary of finishing my radio torture 🙂 It completely passed me by, probably because I was away from the ‘scene of the crime’ visiting relatives in England. My memory seems to be getting worse, I’m really not sure if it’s age or illness related. Anyway, the good news is I have passed the 2 year mark & the cancer is unlikely to rear its ugly head, but, fingers & toes crossed 🙂
It is now a new year & things are looking good health-wise, 2 years ago at this time I was not feeling all that chipper but the important thing is survival & looking back I still count myself lucky to have been in such a brilliant place being looked after by fantastic people.
Most of my aches & pains are still with me, especially in my neck but I just live with it, I’ve tried various things but nothing has worked so I just don’t mention it any more. My GP decided he would take some blood for tests, prostate & something else I didn’t understand. I will get the results next time I go there. The assistant who took my blood was spot on with the needle, bullseye the first time 🙂 I did offer up my left arm for a change, this is the arm where my flap came from. My tiredness is still with me but sometimes I do manage to sleep through until 04:00.
I seem to be healthy as my GP didn’t even mention anything about my blood test & of course I forgot to ask. We did touch on my state of mind & I seem to be fine at the moment, keep taking the tablets & you’ll be okay, all in all I’m happy in my own little world 🙂 My next appointment with the surgeon is on 1st April & no it’s not a joke.
Well, I went on the day & everything seemed fine, a month later after visiting my GP I told him about something in my mouth that was sore close to my flap. He had a look & said it was an inflammation so advised me to call the hospital to get an appointment. I go again on Tuesday 12/05/2015 so it’s fingers crossed & hope for the best. Maybe it was the English cuisine 🙂 as we were there for 4 days & I started to feel it shortly afterward?
I went to the hospital, he also poked about in my mouth, more forcefully than my GP, he said it was inflamed but could find nothing untoward. He did say however, in rare cases there might be something that isn’t showing up & if I’ve still got it after 2 weeks, in other words on 26th this month, I should call again & he will order an MRI. It has been getting better, especially after not using my mouth for talking, eating & drinking 🙂
I had to call the hospital again & an MRI was organised. It went off without a hitch yesterday, apart from my left arm ending up like a dartboard again. I now await the results with some trepidation as it seems to be not getting better or getting worse, it just is! It’s been a bit of a roller-coaster these last few weeks for my wife & I.
I called the hospital yesterday to see if the results had arrived, I did have the MRI outside of the hospital, the lady at the secretariat was most helpful & said she would look into it. At around 17:00 the surgeon called to explain the report to me, I’m glad he explained in plain English otherwise I would have had problems understanding all the medical jargon. He gave me the good news that whatever is in my mouth is not cancerous! Happy days again 🙂
I did some testing myself after I was given the all clear & my mouth got better. It took a few weeks but I can categorically say it’s the type of toothpaste I bought in England when we were over last. I have since moved on to sensitive toothpaste & everything is fine again. Obviously there is some chemical in the toothpaste that no longer agrees with my mouth. Even my normal toothpaste I’ve been using for 3 years now causes problems.
And so the saga continues, went to the hospital again for a check up, the surgeon ‘found’ something so decided on an ultrasound & then a biopsy, sprayed some anaesthetic in my mouth & got some sharp forceps & had a tug of war with my flap 🙂 If I don’t hear back from him within 10 days there is nothing to worry about. It was all done & dusted in 15 minutes.
I haven’t heard anything from the hospital so I can safely assume, I hope, that the biopsy came back negative.
I’ve heard absolutely nothing from the hospital so things are fine 🙂
2 days ago I ‘celebrated’ 3 years since the end of my radio torture, there have been ups & downs but on the whole everything has turned out positive. Just another 2 years to go before the all clear, I have no doubt there will be other scares along the way but I will master them.
I had my 6 monthly check up yesterday, everything is fine, I had the now obligatory ultrasound & nothing untoward was found. Next appointment is in another 6 months unless I have any issues/worries & then I can call for an earlier one. As usual efficiency was the name of the game there, I was in early & then had to wait because all the ultrasound machines were busy but I was out after 30 minutes & on my way home.
It’s been a while since I last wrote but the really good news is that everything is fine although I did have a scare about my blood, that is another story completely & not related to this. My next appointment is in September & I’m expecting no unwelcome news. Considering I was made redundant last year around this time I seem to have less time on my hands than I expected. The redundancy was in no way illness related, my time had come 🙂
Just back from my 6 monthly check-up, Everything is fine, the surgeon is happy & so am I. Only 2 more appointments now until the 5 years are up.
Penultimate check-up today, another ultrasound & nothing found I’m happy to say. It seems I have C7 syndrome & we spoke about it maybe being as a result of the operation/radio therapy. Only maybe as I have degenerative changes to my neck as well. I’m currently undergoing physio but it didn’t work last time so my GP is talking about an operation. Only time will tell.
Just got back from the hospital & was given the all clear, he also told me the survival rate for this sort of cancer was 50/50, I’m one of the lucky 50%. I took the consultant a bottle of bubbly we bought in France & a few chocolates. When looking around in my mouth he said I had a papilla (I had to look it up when I got home) on my palate, he said it was 99% benign & would I like it removed? Well, no time like the present so I said yes. He numbed my palate, said he’d be back in 5 & was as good as his word. He brought with him a bib, a long pair of pliers & asked me to open my mouth. In they went & after a good tug the thing was out. It has gone for a biopsy & if I hear nothing back it’s benign. Fingers crossed I don’t hear back from him 🙂
The physio I had a few months back didn’t really work, I seem to have a shoulder rotator cuff problem but I’m managing it. The orthopaedist said I will have to live with it for the rest of my life. You win some, you lose some. Hey-ho I’m still alive & kicking so I’m happy 🙂
It’s now official, I have got the all clear in a copy of the official report from the hospital addressed to my current GP & my previous GP. The papilla turned out to be benign as my consultant had surmised.
I am one happy bunny 🙂 Special thanks goes to the hospital, my consultant, the hospital staff, my wife & family including our dog who didn’t realise what was happening & was his own egotistical self 🙂 friends & my work colleagues
Just a quick update, I’ve noticed a lump in my neck where I was operated on, where my lymph nodes are or were. I am currently undergoing tests here in Norwich as we have now moved back to England.
Strangely enough even though I was worried it was linked to my previous cancer & I think everybody thought the same, it turned out otherwise, I got a call while on holiday basically telling me they/we’d be thrown a curve ball & it was something new & unrelated to my tongue cancer. So that meant cutting the holiday short to come back. It was a shock to say the least.
So far I’ve had an endoscopy, an ultrasound & a fine needle biopsy at the NNUH & although the tests are in they still need to do more tests at Addenbrooke’s hospital in Cambridge. The preliminary results now show non-Hodgkin’s lymphoma. The tests in Cambridge are for the grade of the subtypes of lymphoma, high-grade or low-grade & possibly the stage of the cancer. It’s all a bit much to take in with my old brain 😄
Had a PET scan yesterday at the Alliance Medical, (NNUH) very efficient, caring & friendly. I was called the previous day telling me what I had to do, no tea, coffee or food 6 hours before my appointment, drink plenty of water, wear a tracksuit & t-shirt, i.e. nothing metallic, I managed to screw up as the drawcord holders were metallic eyelets,🤔 first port of call after checking in was the loo! I was shown to a cubicle, asked loads of questions again & then had a cannula put into my arm. A little while later I was injected with a radioactive liquid & twiddled my thumbs for about an hour waiting for it to circulate in my body. Then off to the “doughnut” to have a relaxing 25 minutes on a comfortable if narrow bed. Now I just have to wait for the results to be sent to my referring consultant.
My GP & ENT consultant were sent a summary of what I’ve had done so far & I have to say it was very thorough & included everything we’d said in the consultation. I class that as very efficient.
I have just got back from an echocardiogram at NNUH everything went well. I asked why I was having it (my consultant did tell us & my wife told me but my memory it a bit bad at the moment 🙂 ) & the nurse said it was so they would know what my ticker was like in case I needed radio or chemo in future.
My next appointment is on 20th April at NNUH Combined Haematology unless it’s brought forward for any reason.
2 days after my appointment we’re just coming out of the shock. I’ve had the results of my biopsy & PET scan & they are not what we wanted to hear. The lymphoma has spread – but not badly – to my throat & near my spine. It was diagnosed as high grade B-Cell stage 4 non-Hodgkin’s-lymphoma but also with some low grade follicular “bits” in it.
The hospital has said I will need chemotherapy called R-CHOP, it will be in 6 cycles over a period of 18 weeks, i.e. every 3 weeks or 21 days. The first time I go I will have some anti-sickness tablets & a slow drip as they don’t know how my body will react to the chemicals. After that if I remember correctly it’ll be a hour’s session hooked up each time. I’ve been given lots of things to read about it & it’s not easy reading, especially the possible side effects 😢
It’s now a case of waiting for a phone call or letter from the hospital for the first appointment.
I haven’t heard anything from the hospital, we have a friend checking the post for us as we decided to get away & visit the kids in Switzerland, we’re glad we did as we have no idea when we’ll be able to visit them again.
Got a call with my marching orders, so it was off to the vet to get Toby’s worming tablets sorted & to make sure his passport was up to date. We got back on 09/05/2022 ready for Friday 13th when my appointment was. In the meantime I’d got an e-mail with a form to complete from NNUHFT about my residency status (I was still down as living in Switzerland). I decided to ask why & explained we’d been resident since April 2018 & I’d also told the hospital/GP & a good few other institutions. I ended up not filling out the form & just sending a utility bill & a copy of my passport. Sorted!
The day started quite well, got to the hospital on time, no thanks to the constant roadworks in Norwich! Was admitted to the care of the lovely ward sister on Mulbarton ward who explained things simply so my old brain could take it all in 😜 They would take my blood as a baseline then I’d be given a cocktail of anti-nausea tablets, have a cannula put in my wrist then they would come back & give me the first drugs via syringe & a drip of sodium chloride. So off we went with the above. I had a bed & chair plus an ensuite.
After that it was on to the really nasty stuff, rituximab, which was slowly infused into my veins. It was slow to start with (it took 4 hours in the end) as they didn’t know how I’d react to it. Every 30 minutes I had my blood pressure & my temperature taken & my dose increased. At 18:30 I was out – with a load of tablets & instructions – to see my wife & dog & we went home.
Had a very bad night, didn’t sleep very well at all. Finally got to sleep at 3 after taking some anti-nausea tablets, was awake again at 05:30 needing to go to the loo, so I let the dog out, let him back in again after 5 minutes, fed him & went back to bed to see if I could sleep some more. I managed 30 minutes.
I have now started on my régime of steroids & anti-nausea drugs for the next 4 days, maybe I’ll end up with bigger muscles 😂
Next appointment is on 7th June at 09:30 in a different ward, this time Weybourne out-patients. The roadworks on Sweet Briar Road should have finally finished. They’ve been going on long enough, 3 months for a burst watermain! There was an article in the local rag saying people are frustrated with Anglian Water because it’s taking them so long to fix the burst watermain.
I had a good night last night, managed 6 hours. No acid reflux or feeling sick. I have finally learnt in my old age not to eat too much of an evening. I believe one of the causes of my acid reflux was the Yorkie bar I ate around 20:00 because I was feeling hungry. Last night it was a cheese & Marmite sandwich followed by a banana & lots of seedless grapes.
Day 3 after chemo, feeling better each day, long may it last. I managed 6 hours sleep again last night, no acid reflux or anything to disturb me. Had lamb chops, baby potatoes & peas last night followed by honeydew melon again (had some for lunch as well, along with seedless grapes), a banana & lots of seedless grapes. I haven’t eaten this much fruit ever, I’m even eating fruit for breakfast so I must be ill 🤣
I do have a slight problem, constipation as a side effect of chemo. I got some stuff from the pharmacy today & will take it tonight before bed. Turns out that insomnia can also be a side effect so that’s maybe why I’m not sleeping as well as usual. 6 hours should be enough though being retired 😊
Day 4 after chemo, got some laxatives from the pharmacy yesterday, they haven’t worked. Still eating lots of fruit though. Took my last anti-nausea pills yesterday & the last of the steroids today. I slept better last night for the first time since Friday but feel very tired.
Spent the afternoon in the kitchen yesterday knocking up dinner, bolognaise sauce & also knocked up 2 x 2 lasagne verdi for the freezer. It seemed I had a lot of energy yesterday. Dinner was followed by more fruit. Must see if I can get some figs from somewhere 😜
Breakfast this morning was also followed by seedless grapes.
Just got a call from my surgery, a check on how I’m doing on my journey. Long chat about everything chemo/cancer/tablet related stuff. The surgery is a little bit behind but that’s understandable as I only had my chemo on Friday. I also had my meds’ check at the same time so I am good to go for another few months.
One of the things that stuck in my mind on the NHS website was about exercising. We are keeping to our usual routine of dog walking & everything else we do. It might not be short walks but it’s really good to get out into the fresh air.
Had pizza tonight followed by fruit salad. thoroughly enjoyable.
Had my usual 6 hours sleep last night. Was up at 05:30, let the boy out, let him in again, gave him his breakfast & made a cuppa. I’ve had breakfast followed by fruit. I’ve finished my course of après chimio tablets & am starting to feel a bit tired. The steroids certainly kept me going. I’m pretty sure they are not that healthy in the long term as the body needs sleep & relaxation, something sorely lacking at the moment but it’s early days.
Back from a walk with my wife & Toby. It was only for about an hour. I feel fine if a bit tired of course.
I’ve come back to earth with a bump. I was up at 06:00 did the usual & went back to bed. I felt so tired most of the day but still kept to the routine of walking up to town to go to the deli. I’m eating sort of normally, well, less to be honest.
We will go out for an evening walk somewhere as it’s nice weather.
I’m now on day 7 après chimio & things are slowly getting back to normal. I feel better in myself, unfortunately I have a bit of a sore mouth so I will try a bicarb mouthwash today to see if it helps. I also have sore eyes, they are watery & stinging at times.
Had a semi-decent sleep last night. I felt tired most of yesterday but got through it without too many issues.
The fresh air is doing me good. We sat by the canal last night after walkies with Toby & it was so peaceful.
Today it was another beach walk this time in Cromer & a small lunch out.
I went through a bit of a rough patch in the last couple of days. It wasn’t my finest time of life. I was pretty down in the dumps & under a huge strain due to someone not really listening to our wishes about an important thing.
Anyway, my sore lips & mouth are slowly getting better, my tiredness is still there but I am sleeping better. I have some gel for my mouth & some lip balm. My mood has improved possibly due to getting out & about with my wife & Toby & keeping to the routine as much as possible.
Feeling a bit better each day now, my appetite is back, the tiredness is still there of course but I’m able to function better. I’m just over halfway before my next cycle so I’m feeling positive. I know the treatment will have a negative effect & is cumulative but thinking positively will help.
Just back from the hospital after my second cycle of chemo. Took my pre-meds an hour before as instructed. Arrived at 09:15 in plenty of time for the start of a fun few hours. Seems I’ve got my vein problem again, sort of invisible veins but the nurse got there in the end. Bloods taken, then the usual stuff was pumped into me & then the rituximab made its appearance. 1.5 hours of that. Finally 2 swabs were needed, 1 up my nose, the other the side of my groin to test for MRSA. So it was off to the loo to do that. I was given my meds for the next few days & was allowed to leave. Got home feeling extremely tired but had something to eat – homemade lasagne – before resting but not sleeping because of the steroids 😕
Day 2 after the chemo & things are pretty good, probably because I’m still on steroids 😂 I’m not feeling sick or being affected in anyway really. I’m sleeping OKish but that’s to be expected if I don’t sleep as I normally do. Might try to visit family before the next cycle in 3 weeks.
A lot has happened since the last session of chemo. Strangely my lips & mouth are not sore but I do feel a bit nauseous at times, I also feel very tired most of the time but we did manage to get away. My appetite hasn’t been great but I’m keeping up with the fruit & flavoured milks, I’ve also started to eat cereals again, something I last did when we has Covid last year. I do seem to be peeing a lot more at night so that’s a change. My memory is shot to bits but I think that might be long Covid although it is getting worse.
When we left home we had a check list to make sure we had everything, passports, tickets etc. The main thing after those things was our tablets. I seem to be carrying a medicine chest with me, Warfarin, statins, anti-nausea pills, laxatives – although I’m drinking lots of apple juice – Ibuprofen & anti-depressants from way back.
So far so good. Really hot here the last few days & it’s set to get worse, a temperature of 38C is forecast. I feel a wave a tiredness today but I did do some work in the garden yesterday even though my wife tried to stop me. I am sleeping better & eating more but because of the heat I’m getting bad cramps in my legs even though I’m drinking a lot of water.
Back from our holiday. I’ve had we got back on the Monday 27th June & was due my next chemo cycle on the Tuesday. I was feeling great if rather tired & achy. The session went well, early start at 08:30 but was through by midday & home for lunch. My first week (5 days) on steroids was basically the same as the previous cycles. I’m coming to the end of the second week & I have overwhelming tiredness. & queasiness from time to time not to mention dizziness when I look up or bend down.