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.
