Late again!

I don't put myself forward as an "expert" about much; but the internet age has changed things. In recent history I've spent a lot of time online talking about Everton and fair bit less talking about Zakynthos; there are other things I contribute to but those are the two main ones.....and now I find cancer (more specifically the head/neck variety) creeping into the group. Not that I'd actually call myself an expert on any of them; I'm a fan/enthusiast of the first two and necessity has drawn me into the third.....nice bunch over at the Macmillan forum; I hope you never get to meet them!

Where was I? Oh yes; nine days into treatment so time has come for a bit of an update. Not too bad at the moment thanks, but I suppose a bit more detail would help.
Radiotherapy has not been a problem at all so far....I cope well with wearing the mask (though the radiologists, or are they radiographers, call it a "shell"); so you go in, lie down on your back and get clamped to the table, which is very hard (hard as in solid and uncomfortable rather than hard as in difficult). They make minor adjustments to your body position and then talk in some sort of foreign sounding language around your head while they make final miniscule ones (they sometimes say "teenth" and I want to make a joke about not being allowed to smoke any more, though it's kind of them to offer, but the mask has me struck dumb by now). Not that I've smoked for thirteen years.
Then they tell me they're done and that they're off out (hopefully not for a smoke), and sometimes they ask if I'm OK (give thumbs up) or tell me if it's a long one or a short one on that particular day. It's only "long" if the oncologist has asked for some pictures.....the machine doubles as radiation zapper and CT scanner; neat eh? Bit like a sniper having a camera on his telescopic sight, he can shoot the bad guy and then have a 6x4 of the result.....probably a digital camera would be best because if you tried to get it printed at the local chemist they might call the police in. I'm waffling.

So you lie there and it makes beep beep noises for a bit, then a few clunks, then I start wondering if they've forgotten me, tell myself not to be daft, listen to the music of choice for a while (Crowded House today, yesterday was local radio fab FM or whatever), try opening eyes and fail, wonder what I'd do if my nose starts itching even though it never has and there's bugger all I could do if it did, wishing my back would stop hurting and wishing it was done; and by then it normally is.
The girls, women obviously but they seem ridiculously young to be doing such a brilliant, professional, reassuring, friendly and important job (viz, keeping me alive) then come in and release me.....which is a nice feeling.

Then I go home, or I go for a blood test (today), or I see dietician/speech therapist (Tuesdays), or I see my whole team (tomorrows Fridays). Should be an interesting one tomorrow as they took a scan yesterday so hopefully they'll be able to give me some sort of idea of how things are going so far.....like is the sucker shrinking?

My neck is beginning to get a bit sore and my singing is getting worse (didn't think that was possible!).

The chemo last Tuesday was an OK day in itself; a lot of sitting around, eight hours, in a comfy chair looking at the laptop while Deb watched movies on Josh's tablet between nipping out for a smoke (probably meeting up with the radiologists) or a snooze in the car. There were several preparatory drips before the actual chemo drug (Cisplatin) and a couple after, they took between half an hour and two hours a bag.....the one to protect my kidneys hurt my arm a lot though, known side effect, so they had to wrap it in a thing like a mini electric blanket to dilate the vein.

Side effects? The classic image of the bald, vomiting chemo patient won't apply in my case; for one thing Cisplatin doesn't make your hair fall out (not that I have much to lose anyway) and the nausea was well controlled by many and varied anti-emetics, some intravenous and some that I brought home with me. Apparently they work well for most people and the staff in there seem mildly irritated by the "throwing up" routinely shown on TV because it's the exception rather than the norm.

I was very tired a couple of days later, had a sixteen hour sleep and woke up still exhausted, but it's not a nice exhaustion.....you just feel rotten. More than a week later I'm entering the "body feeling better but immune system fucked" phase of the cycle which will last until next Tuesday, so I need to keep away from sneezing children. It's strange that I'm so vulnerable and potentially hours from death (obviously won't happen because we're taking every precaution.....along with my temperature every few hours) while I feel so healthy. Then the final week of the three the immune system picks up and I go back in for the second dose (4th Feb) and we start again.

All in all. Twenty-seven more radiotherapy fractions (that's what we experts call them) to go plus two chemo cycles and I'm feeling pretty good, positive still, realise much worse to come before I/it gets better, I'm more informed, less afraid, probably over compensating by being too jovial about it at times (Debbie finds that attitude hard to take). My brain is a sieve, I keep losing and forgetting things.....glass case yesterday; today I carefully packed glasses, phone and appointment list in my bag and then left the whole bag at home!

Feeding tube is still in place and I'm keeping it nice and clean....no need to use it yet but I flush it through with water (never gin) every day.

That's about it for now. I could start talking about the psychological effects of the trials, tribulations, laughs, love-ins and fights this is causing within our three person nuclear unit but I'd still be here in a year.....without even touching on "extended" family, so best leave that wound uncovered for a bit.

And another thing

Asked Josh what he wanted for breakfast this morning and he said, "Marmite on toast please dad"! 

He doesn't know the significance of the Marmite jar (for obvious reasons) but I could have kissed him.....in fact I did!

And we're off....

Actually started writing this on the 13th but only posted today, so the date above this is a bit misleading, but I don't suppose it matters much in the grand scheme of things.

First radiotherapy this morning but first a brief summary of my overnight last Thursday (as promised ).

Overslept.....unbelievable! Needed to be on the ward at 8.30 and woke at 8.55....that never happens to me!

Straight on the phone to the ward and they were great, said I'd be there in an hour and I almost was.....nurses took the piss mercilessly though, which made me feel much better. No available bed on the cancer ward so I was put on the chemo day unit to start with and then taken down for my RIG tube to be fitted (called it a PEG earlier, they're basically the same end product but with different fitting procedures). First part of this is a naso gastric tube stuck up your nose, down the throat an into the stomach to inflate stomach for the RIG to be fitted. Worst experience, by far, of this whole process. They can't give anaesthetic or sedation because they need for you to "swallow" it when asked.....absolute fucking nightmare! Choking, vomiting and crying ensued.....and that was just the surgeon! I was far worse....uncontrollable full body shaking, just awful. Luckily once it was in they could give me shitloads of sedation and local and the actual insertion of the tube (and the removal of the naso gastric) was pain free. Never again!

Yeo ward (in patients cancer) was full by now so I was taken to the Cherybrook Chemo day case unit to recover; then on to a bed in the adjacent haematology unit for the night......all very luxurious and modern compared to the rest of the hospital I have to say. None of this "pay a fortune for a postage stamp sized TV" for example, had my own wide screen with DVD player, staff were superb and I actually had the three bedded ward all to myself for the night (with private facilities obviously)! If it had been a hotel I'd have given it five stars on Tripadvisor. Even the food was edible ffs!

Was lucky that any pain was controlled just by ibuprofen when apparently some people need morphine and several nights as an in patient to get it sorted.

Only real problem was an aching stomach when I started to read the excellent "Man Who Hated Walking" by Overend Watts because it made me laugh too hard (maybe he could use a quote from this blog as an alternative to one from the New York Times on the back page if he, deservedly, gets a second edition out!) Thanks to my great mate John for the recommendation and to my big brother Mark for buying it for me.

Had to wait until 2.00pm to see a dietician to show me how to clean and flush my new appendage (I like to think of it as a piercing with attitude) which is all I have to do until such time as I need it but then they let me home.

Home....hmmm....over confidence or nonchalance maybe, went to bed Friday night without bothering to take any pain killers because it was a breeze, right? Wrong in spades! Woke up at five in indescribable pain, I say indescribable but I did in fact describe it in many and varied four letter words (few of which were "ouch"). I woke Deb, took two co-codomol and cried on her shoulder on the settee for about half an hour before it eased off. We had a deep conversation during this time which consisted of me saying "Sorry" and her saying "Stop apologising!"

Anyway, the lesson learned from that is always to play on the safe side with drugs....if you're prescribed them, take the damn things.

Anyway haven't, with my usual efficiency, got around to the radio/chemo yet (which I'm now four days into) but I'll try to update in the next day or two.....suffice to say that at the moment I'm OK, anti sickness working well, just a bit over tired. More soon.

Starting up again....

After the relative quiet of Christmas and the New Year things are beginning to start moving again.

Been feeling physically fine for a while now, my shoulder is still a constant ache but I think the new physio exercises are working and my pain killer intake is now minimal. Getting used to having a dead area on the side of my head but I think it's shrinking a bit; my ear and my neck are still numb but the area around my ear seems to be getting a bit of feeling back, maybe just my imagination. Scars are fading as well, particularly the big one which runs from behind my ear to my throat and as it kind of follows the creases of my neck it's not hugely visible. Even had a go at shaving it myself a couple of days back and was fairly successful (Deb had been helping before). Was laughed at by a couple of mates (more of that story to come) when I said it was like trying to shave a coconut; they rightly said it was a useless analogy, so I've thought of a better way of describing it. Imagine strapping a piece of fillet steak (or sirloin if you prefer) to the side of your face and trying to shave it.....you can feel a minor sense of pressure but no sensation of what the blade is doing....it's hard, specially when you can't turn your head enough to see the side of your neck so you have to rely on feel even though you don't have any. It''s really odd.

Another bit of positive, probably not mentioned in here so far that me and my son Josh, who's seventeen, are massive Everton fans but rarely get to go to games due to living two hundred and fifty miles from the ground.....but we went up on the 29th as a Christmas present for us both. Met the aforementioned couple of mates (Matt & Jaime) in the pub before the game along with Matt's sister Tori and had a brilliant time before, during and after the match. Laughed so much, shouted so much (not great for my throat maybe) and enjoyed so much that for the longest time since this started I completely forgot about cancer, so sincere thanks to the three of them (despite dissing my analogy) and the other 39,087 inside Goodison for making it such a special day! And we won.

Anyway, back to the job in hand. Saw a speech therapist and a dietician on Thursday who pretty much went through stuff I was already aware of but it was good to meet them, very nice people who I'l see weekly during treatment. Had to make the choice between a naso gastric feeding tube (which goes into your stomach via your nose) or a percutaneous endoscopic gastronomy (PEG) one which goes direct into your stomach. Have gone for the PEG for a couple of reasons; first it's not visible and second my gag reflex is such that the naso gastric is likely to cause problems and I may keep coughing it out! PEG looks like this (originally I used a photo of one I found online but now edited to show off my physique, or otherwise)....

....having it fitted next Thursday, so another overnight stay.

Funny thing about eating is that due to changes in your taste buds food tastes different and/or tasteless. You can actually develop an aversion to things you used to love that stay with you after treatment is done! So the lesson is to not eat your favourite food during treatment in case you grow to hate it (no prawn curries for me then!).

It's fitted before treatment starts (even though I won't need to use it for several weeks) because of the risk of infection......and infection while on chemo can be "life threatening" and frankly my life feels threatened enough without adding another scythe to the Grim Reapers arsenal (that's not a bad analogy, I'm getting better at this!).

That's about me up to date I think....ooh, apart from the financial advice people at my local cancer support center (Force in Exeter, lovely people where me & Deb can get counselling, alternative therapies like massage, acupuncture etc) told me I can reclaim expenses for all my appointments up to now! Don't know what the mileage rate will be but I reckon it's about twenty trips of thirty miles each so six hundred miles.....be a useful sum. And then I'll get the same for the thirty-five radio/chemo trips while I can still drive; then a hospital car for when I can't.

Feels like the calm before the storm at the moment. Report back when I can.

Mike.