Long overdue update

Wow, was that last post really four and a half months ago? Time flies and life is a lot different now but I'll try to fill in the gaps.

Firstly, the motivation for revisiting this. Momentous news! I've just come home from Tesco with (cue ELP Fanfare for the Common Man and TV talent show style pause) a jar of Marmite! Now I know as well as you do that a jar of Marmite is never truly empty, there's always more to be had if you scrape around with your instrument of choice; but, to all intents and purposes the monster jar I bought last November is no more! So I win. But it's been a battle, and it still is to a lesser extent.

Going back to the last update in March; the predicted "bounce" in my physical health duly arrived probably just a few days after I wrote it, and then my first (four week) post treatment check by the oncologist and surgeon was pretty positive. Lots of feeling of the neck, prodding and poking and endoscope action and they could see/feel nothing untoward. So tentative good news.

After all the stresses and strains I decided we deserved a bit of a break so I booked four nights in a yurt in mid April. They're only about five miles from home but looked right up our street http://www.blackdownyurts.co.uk/  and indeed they were, absolutely beautiful. Unfortunately, two or three days before we were due to go, my mood completely went off a cliff. Subsequently found out that it's not uncommon that after all the intensity of the treatment and initial recovery people can get depressed, but I've never felt anything like it in my life. I literally had no motivation to do anything at all, all I wanted was to stay in bed and I had no idea why, couldn't begin to put my finger on what I was depressed about. Horrible time, for all of us obviously because Deb and Josh had never seen me like that, and sadly Deb and I just managed two nights at the yurt (second of which I got out of bed at 3.00pm) before we had to come home because I was such a miserable sod.

Anyway, saw my GP and got given some anti depressants, then got a counselling appointment at "Force", who are a cancer support charity in Exeter. Walked in, sat down and burst into tears, couldn't speak for ten minutes. But the guy was brilliant and between him and the pills I picked up really quite quickly; very unpleasant few weeks though. Force incidentally are brilliant, had no end of support from them including massages, financial advice and ongoing weekly acupuncture (to stimulate saliva production in the sandpaper cave that was my mouth, radiotherapy damages salivary glands, see ongoing side effects later in the post). Picked up enough to take Josh up to Goodison to see the mighty blues take on Man City, lost 3-2 but was a great day and we stayed overnight in a hotel because Deb was worried about me driving up and back in one day. Nice to spend the time with Josh and the trip went a little way to making up for the fact that we'd always planned a week end at Silverstone at the British Grand Prix for his eighteenth (which was in June) but there was no way I was physically capable of taking that on. He's always seemed to be brave through all this; but listening to him telling me about (more than once) crying himself to sleep at 4.00am before getting up for college at 6.30 was hard. Not wishing to be overly dramatic about this, but one of the first things I thought post diagnosis was about being around for his eighteenth.

Takes us to the end of April. Since then things still gradually and tentatively picking up. Had another endoscope check (April 28th) with the consultant, I'm back under the surgeon now rather than the oncologist, and that still looked clear. So the gap before my next check was increased to six weeks; in the interim I had a bit of an issue with lymphoedema in my neck, which is basically swelling due to lymphatic fluid not being able to drain properly as all my lymph nodes have been removed. Closed my throat up really badly for a bit and quite scary as I was waking up at night gasping for breath which is no fun. Made eating, already difficult, impossible for a while so I was back feeding through my RIG tube overnight for a bit. But the  "team" and a specialist lymphoedema nurse got that sorted fairly quickly.

June 9th six week check with the consultant, all still looking clear so I asked him if that meant I could be described as "in remission" but he sadly said "no". Not sure what the criteria for that are, I'll ask next time. He sent me for an MRI scan which also came back clear earlier this month ("Dear Mr Oldfield, I am pleased to say that your recent MRI scan did not show any worrying features and confirms a very good response to your treatment."). Also eating enough now to have the feeding tube removed about ten days ago.

So that's where I'm at today, next appointment with the big guy is in a couple of weeks time (11th Aug, now on a two month gap from the previous one) when hopefully I'll get more of the same!

If I sit down now and think about how things have changed in the last nine odd months, christ the time has flown by, it's all a bit strange but from today's perspective it's the new norm.
So, we have, firstly the continuing effects of the surgery last November; right shoulder is still weak, painful and slightly deformed. Have no real strength in it and raising it above ninety degrees is painful bordering on impossible; the "deformity" is that it's dropped so it's an inch or two lower than the left, not too noticable I don't think when I have a shirt on but very visible when I don't. I have a kind of "double chin" where my chest meets my armpit. Have been doing physio for a long time now and see little improvement. All of this means my dreams of playing lead viola with the London Philharmonic are dashed.
Still have a lot of numbness in the right side of my neck, head and ear. Nothing to be done about that, might partially come back over the next couple of years but may be permanent. Used to it now, though shaving skin that you can't feel is odd. Try it next time you get home from the dentist having had a local, it's weird; though actually shaving is a much quicker process now than it used to be (see radiotherapy side effects). Scarring is fading nicely, no longer get pointed at on the street by small children. My celebrity was short lived.

The one long standing effect of the chemotherapy is on my hearing. Very common effect of cisplatin apparently. Had it tested pre treatment (so they had a "base line" for me, not a "bass line") and then again a few weeks back. It's had quite a profound impact; though luckily for me my hearing at the start was much better than average for someone my age, so although the loss has been great I'm not too far off "normal" now. They still offered me a hearing aid due to the impact of it but I refused, I get by. Strange thing is that it's affected my ability to hear certain consonant sounds, notably "th", sounds like an "f". Finally I have virtually constant tinnitus, but it doesn't overly bother me. Some people it apparently drives insane, but luckily I'm quite able to tune it out; it's here again now while I think of it but it'll be "gone" in a minute.
Music sounds very different so I'm having to get used to familiar songs sounding unfamiliar; almost to the extent that some stuff sounds like it's been done by a cover band rather than the original artist. My life is very strange.

Radiotherapy (if you're getting bored go and get a beer because this one could go on a while, I'll try to be as brief as I can). It's a bugger. In my early ignorance of such things it was the "chemo" word that was scary; that's the vision of cancer on the TV isn't it? Bald headed emaciated people throwing up so when they said to me at the the outset that the main treatment was RT I was relieved. Foolish boy.
Back of my throat is still swollen and sore, eating is a major chore, never a pleasure. My mouth is dry so it's hard to swallow and my taste buds are still screwed, very few things taste nice or "right". Luckily Marmite is one of them; salami/pepperoni another, can't think of anything else that I actually enjoy the taste of. Bits of salad are OK for the first few mouthfuls but then go off. Bread is hopeless (Marmite intake comes via crumpets), meat is virtually impossible, I could go on and on. Oh, another thing that complicates eating is the lack of lower teeth at the back of my mouth, hopefully I'm going to get some restorative dentistry, implants are a possibility but RT can damage bone so there's a chance they wouldn't take.
So I'm still having to supplement my diet with Complans, but I suppose it saves on the shopping bill.

Then on the outside of my neck we have the make-up routine; well not really but I have to moisturise big time and also wear factor fifty whenever I go out in the sun (also have to wear a wide brimmed hat). Shaving is easier, as I mentioned before because I no longer get any growth on my neck, this is permanent apparently; caused by radiotherapy entry and exit damage.

That's about it I think, apart from the cumulative effects all the treatment and sedentry lifestyle have left me with. Have very little energy, get out of breath doing the most gentle physical tasks; I'm thinner, after walking a mile or so my legs feel like Bambi on ice.

And when I look in the mirror I see a guy who's aged five years; don't like that very much.

All things considered though, as the alternative to all of this grief would have been joining the bleedin' choir invisible I suppose I shouldn't complain too much.

I'll get back to all my legions of readers (does six count as a legion? I think that's about as many people as I've given this link to) if there's anything else to report; or perhaps if there's not I may just moan a bit.

Post treatment first attempt

Nearly a month since my last contribution here and I suspect this'll be a short one; but the bare facts are nine days post treatment now (the last four I was an in patient due to the weight thing) and it's a chilly early Sunday morning while I sat here being fed by my trusty pump.
I go into the technicalities of this with people all the time.....mental side of it not so much, so that's what I want to cover here briefly.

Almost never do I now think, "....this is nearly done..." because I'm convinced in my own mind that it's not. How does that fit in with people saying to fight it and be positive? It's really difficult and just to survive it (mentally) is tough enough.....if I'm lying in bed feeling total shit I feel like I should be bouncing around or I'm somehow "giving in to it".

(That is really badly written but I can't be arsed to edit it, and you all know how anal I am on that usually)

Edit sometime later: A fellow patient has finally helped me make sense of the "fight it" comment that I really hate because I really don't think it's possible to fight cancer. What she said was, "...you don't fight against your cancer because you can't, that's what your medical team do; what you do is fight for your mental health." Thanks Dani x

I also bargain.....like, "would you take five healthy years?" I'd take five healthy hours sometimes!

But I think I would in all honesty; it'd put Josh to twenty-four (near as), girls all in their thirties and it'd give Deb and I the years to do a few of the things we want.....might even be freeing as we'd not have to worry about the financial issues of living another forty years.

Not very inspiring this one sadly, apparently I'll hit a lift "ten days/two weeks" post RT, and later today it'll be nine days so hopefully more cheer and a bit of much needed optimism will come through soon.

A few days on...

Amazed that it's only six days since I updated, seems like a long time ago...it's been a difficult week. Having thought at the time of the last entry that I was coming out of the chemo downer it just got downer and downer unfortunately, and it was only this morning (Weds 12th) that I woke up feel...

...interlude while author rushed to toilet to vomit...

...ing a bit better. At least I thought I did!

I do physically feel much better today, got up this morning at 7.30, went for RT (23 of 35), went into Tiverton with Deb and I'm still up and about at 4.15 but the eating issue is still a big thing. Said before I need my weight to be reasonable when all this is done to help with the recovery but I can neither eat anything substantial or keep down the vile drinks I have to put straight into my stomach (it was another one of those I lost in the above "interlude"). Seen dietician and an oncologist this week and they gave me more anti sickness pills but that's not the problem.....I'm not digesting anything so stopping me from being sick just meant I got more and more bloated; then it doesn't matter how many anti emetics I've taken, if there's no space left then there's no space left! Don't really want to go down this line but there's fuck all action at the other end, despite laxatives, so I'm stuffed. Literally.

Seeing dietician again tomorrow but I really don't see a solution....hopefully she will (though her last solution was "just keep trying" so I'm not hopeful). I'm beginning to think it's inevitable that a week or so at the end of this is going to be spent as an in patient....wasting away here.

Also on the "in patient" worries is the question of whether they give me the third chemo or not. It's always been provisional, and various people have talked about it being a possible rather than a definite. Said before that RT is my main source of "cure" and that the chemo just boosts its effectiveness by about 5%. My feeling at the moment is that I really don't want to have it, because I know for a fact that with the second having been ten times worse than the first the third will be....well I can't imagine. I know for certain that I couldn't do it at home; so unless the docs tell me it's "life or death" I plan to give it a miss. If he says it'll improve my one/three/five year survival stats from 50% to 52% I'll take the risk...fuck it.

Been trying to get my head round how some people cling on for dear life no matter how ill they are, my dad was one, horribly sick for the best part of ten years but too scared to die to let go. Sometimes see little shells of people being wheeled around oncology in their beds, cadavers with a faint pulse they look like.....why not just let them go? Never will I be like that......I hope; but who knows how they're going to react until they get there?

On that cheerful note I'll have a little lie down I think.

Another delay!

So another fortnight or so in and surprisingly I'm not really feeling too much worse.....it's 1.50am on Friday 7th and I'm up because I've been in bed for about sixteen hours a day since Tuesday's second chemo session; good grief it knocks you out! Twentieth RT session in about eleven hours followed by my "team" meeting.....but the RT side effects (I keep wanting to write SFX but that's "sound effects") are still really manageable. Many people on strong pain killers by now, hear of people on morphine in the third week but I'm going to hit the fifth just still on paracetamol and ibubrofin.....what a hard bastard I must be! Either that or lucky.....probably lucky....actually definitely lucky.

Anyway, eating is the issue now, keeping my weight up. The nasty taste buds have gone from not liking savoury to not liking sweet to not tolerating anything other than water or (strangely but gratifyingly) coffee; Marmite off the menu sadly. Mouth just tastes permanently nasty now rather than just when trying to eat something; and even keeping down high cal supplements from the dietician was impossible after the chemo so I was sick on Wednesday night....first time. I'm supposed to be getting down seven supplements a day in addition to trying to force down solids (impossible at the mo but could get a bit better once the chemo effects ease) and managed one yesterday.....and that one was using the feeding tube, for the first time, because by mouth wasn't an option.

Got to say now in the wee small hours I feel a bit better so have to start a more concerted effort on my weight, dropping fast, in the morning or I'm going to get myself admitted as an in patient for the last week or two and that's the last thing I want. Still driving myself to hospital every day (against all family advice but none medical as yet) and beginning to wonder what happens next when February and all of this. treatment wise, is done.

Lots of shit and "rehab" still to cover and lots of checks to see if I'm clear but will I be well enough for a week end in Amsterdam/to buy my motor bike/week or two or three in Zakynthos/Everton v City (night in Elham would be good also but I'd need my taste buds for that!)?

Christ is it that time already? Means I've only had about twenty hours sleep in the last twenty four.....mustn't overdo it. Deb gently snoring downstairs (in her makeshift bedroom) should sooth me off.....difficult times for her when I'm a useless sod post chemo, sure I'll pick up again in a day or two. Night all.

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.