The next bit.

Some things I need to catch up on.....

Had the staples taken out on 6th December.....surprisingly pain free!

Then a couple of appointments with oncologists to talk about what's coming next; firstly with a registrar and then on 16th with the top man, Dr Hwang.

They described my cancer as "small but aggressive" so they need to throw the kitchen sink at it....seven weeks of radiotherapy and three lots of chemo (added because it increases the success rate of the radio by about 5%) starting second or third week of January. Talked about the side effects and I've since joined an online support group of people who have been through/are going through the same thing and to be honest it sounds horrific. Will have a feeding tube fitted in my stomach because it becomes increasingly difficult to eat, late on even sipping water is impossible due to the level of pain. Lots of morphine and other pain relief will help. Skin on your neck becomes increasingly burnt and can crack. Constant tiredness. Low immune system from the chemo so any infection could be "life threatening".

After all that they think the "most likely" outcome will be that the cancer will be gone and I'll be "cured" (put it in inverted commas because as I understand it cured in cancer terms means you're still clear in five years), but I'll need frequent checks to make sure it doesn't come back and hasn't spread anywhere else....monthly at first.

December 18th I was fitted for a radiotherapy mask which looks like this...



....holds you in place during treatment. Extremely claustrophobic and so tight that you literally can't move a muscle and you're bolted to the table but fortunately only needs to be worn for five/ten minutes at a time; had it on for about half an hour as they did a CT scan after the fitting so that'll be the longest I have to cope with.

Wow.....just read this one back and my sense of humour seems to have done a bunk...people will be putting a side bet on the yeast extract if I'm not careful!

In happy news (just for a bit of balance) our only childless daughter gave birth on the 23rd. I've mentioned Jess earlier in this blog I'm sure, but to reiterate she's been with us virtually every step of this journey so far, despite coping with the hugely stressful complications of having a baby while diabetic. She's been a rock and a diamond (actually as diamonds are rocks I probably didn't need to use both there but it was for emphasis so forgive me) and the joy of little Marcin's arrival was a huge boost. It was an emergency caesarean sadly so not what she'd hoped but the result is magical. On top of that she and her partner asked me the day before the birth (he was induced so they knew he was coming) to be his godfather; and said they'd wait until I was better for the christening. I've not (yet) shed any tears over the cancer but that had me in bits I'm not ashamed to say. It's a big thing in Poland, where his dad's from, and I'm so happy about it!

That's better eh? Bit of positivity.

This is all so strange.

We regret the delay...and we have a different name.

Very late with this update....it's amazing how it's so hard to get around to doing things when you have nothing to do. For me anyway. I started to write something soon after I left hospital on 2nd December but this was as far as I got....

"Holy shit where to start with this one.....it's unlikely to be a coherent linear account of what happened; more like a random collection of facts and feelings as they come to me.

Been out a couple of days now and my overriding memory of the five days I spent on Otter ward is of unrelenting boredom. I had music/video/books but rarely the inclination to use them, and when I did my concentration span was about a minute, so I went back to staring into space. Gets to the point that you actually want the phlebotomist to come and stick a needle in your arm just for the sake of two minutes of human contact."

Skip a couple of weeks to today and much (and also nothing) has happened.

Firstly to continue the bare facts of the hospital stay. When they got me on the table and opened up my neck they found more tumour than they'd been expecting, specifically on my right medial piriform fossa (bet you didn't even know you had one of those, I didn't), so the surgery went from being a selective or partial neck dissection to a radical one. That meant my right internal jugular vein was "sacrificed" amongst other stuff....was about five hours in theatre and woke up with thirty-six staples in two wounds in my neck and I was attached to two drainage jars (not to mention I was catheterised). Morphine got me through OK though!

Woke up the next morning to be offered breakfast and opted for a piece of toast....forgetting that during the surgery they'd taken out four lower back teeth....so I took a bite and there was nothing but gum at the bottom of my mouth. Eating became an issue for a while, still is a bit, swelling made it difficult to open my mouth much and the shortage of teeth meant I had to retrain my brain on how to chew; I'm getting there now but it's not been easy. Upside is I've lost a stone and can fit into my 32 inch waist jeans again!!

Ongoing difficult things; right shoulder is constantly painful and weak, right side of my head along with ear is numb....like when you get an injection at the dentist type of numb. I get constant "phantom" itches that I try to sctratch but there's no feeling there. Starting physio on Friday for the shoulder so hopefully that'll get better and I'll get some strength back. Both problems could possibly be permanent to some extent though, if they're not back in about eighteen months they never will be.

Going to post this bit now, I'll try to follow up soon.

But I should just say that the diagnosis has been changed on the basis of what they now know. It's, to give it it's full name, metastatic squamus cell carcinoma of the right medial piriform fossa. Neck cancer is less of a mouthful though and is close enough.

"Marmite" goes viral, and we have a name!

When I say "viral" what I really mean is that someone other than me has actually read it, so that's good; apart from the fact that he took the piss out of my overuse of brackets (I know I do it....you see, I've done it again).

Just had to have a read back over the last entry to see where I was up to. Spend so much time updating family/friends about where I'm at I forget half the time what I've told who....or should that be who I've told what? Whatever, it's a good job I have so few friends. Ha! And I have to tell a lot of people individually because some I want to know (and hopefully they want to know) precise details but others I just give general info. Funny the different reactions though; some, but not too much thankfully, sympathy and some encouragement. Funniest one is an internet friend who is just totally positive with eveything I tell him, every step of the way has been, "...brilliant news Mike!" If I told him I had three months to live he'd say, "....brilliant news Mike! That's much better than two!" Bless him.

Anyhow, it's Thursday morning and I'm off to Plymouth in a couple of hours for the scan, looking forward to lying down for a few hours 'cos I'm shattered. Jess moved house on Tuesday and I hired the van and Deb and I helped her. So work force consisted of a granny, a fifty something cancer patient and an eight month pregnant diabetic but somehow we coped. Jessie's other half had to work but luckily was on hand at the end, along with Josh who'd finished college, to move the fridge/freezer (which pinned my hand to the wall half way up a staircase, agony for a bit) and washing machine.

Going back to Monday and my first appointment with Mr Brightwell, finally got an almost certain diagnosis. He dug far deeper with his endoscope (camera up nose, I looked up what it was called) and is pretty sure he found the primary cancer on my voice box....so it's called cancer of the voice box/cancer of the larynx or laryngeal cancer. Good to have a name.
That reminds me. The day I was first diagnosed and had my tonsil out etc. I was in the ward post op and there was a guy in the bed next to me who'd been diagnosed a week. He was endlessly on his mobile telling everyone in a very loud voice about how he was going to "fight" it. He also had this brilliant idea that fighting cancer sounded too scary so he was going to call it George. Having told about fifteen people this story on his phone and putting it on his facebook for his five hundred friends to see he was then kind enough to tell me about it personally (because obviously I'd not overheard any of his conversations in the previous two hours) and to suggest I do the same. I thanks him for his sage words; though I really just wanted him to shut the fuck up.

I digress, Mr Brightwell also suggested that the radiotherapy would probably be for six weeks, which is on the high side, was hoping for four or five. Side effects get worse the longer it goes on apparently, so I'm a bit pissed off about that.....as the doc said, "The surgery's the easy part." Radiotherapy (along with chemo which is still a possibility) will start when I recover from the operation which will be after about four weeks I think, so with the op scheduled for next Thursday I'd have thought I'll be OK at Christmas.

Nearly forgot to mention that they did an x-ray of all my teeth because any that are in the area of the radiotherapy "beam" need to be in tip top condition to cope with it. Any that aren't will have to be removed. Now I know for a fact that I have at least one tooth that needs to come out because the dentist told me a couple of weeks back....hopefully they won't need to remove too many but I fear it may be a few. Luckily I think my front ones are pretty good so any gaps should be "invisible". The one positive thing is that they'll take them out while I'm under general anaesthetic next week so no visit to the dentist.

About it for now, just fancy a coffee but I'm within six hours of the scan so I'm only allowed water. Bollocks.

"Missed" appointment; and some new ones.

Had a call back on Tuesday from Joy, my very pleasant specialist nurse, and she said the scan appointment was being processed and that the head & neck surgeon (Mr Brightwell) wanted to see me next Monday, which is the 18th. Had a long chat about the wobbly day I'd had and was she very understanding and helpful.

Then the following day (Wednesday) I got a letter with an appointment with Mr Brightwell for 11th November, which was two days previously....so I'd missed an appointment I didn't know I had!

Rang the booking office to query and they said that even though I'd missed the 11th they had given me another one on the 18th because they'd, "given me the benefit of the doubt" over not turning up. Gee thanks.

At the bottom of the letter (and at the bottom of every one I get) is the message....

"If your condition has improved and you no longer need to be seen please call the above number."

Really?

HOLD THE FRONT PAGE!! The phone just rang and I have my PET CT scan date; 21st Nov but I have to go to Plymouth. Could've waited another week and had it closer to home (Taunton) but I just want things to move as fast as possible now.

Actually got my mind off things yesterday by planning my insane idea of buying a motorbike. It's the top of my "bucket list" (which is something I think everyone should have regardless of their health). Was distracting for a few hours and is something that really appeals. Not ridden one seriously for pushing thirty years but hope it comes off somehow....I'll let you know, even though "you" don't exist and I'm still just talking to myself!

Another update! I now have my admission date for the surgery, Wednesday 27th; operation won't be that day because the letter says I can eat and drink normally before reporting to the ward (Otter) at 2.00pm. Should hopefully be out by early the following week.

Sadly probably screws the plan I had with my brother to go and watch Guildford City play at Bridgwater on Dec 7th, not a chance I'll be able to drive by then I don't think. Mark'd probably come and pick me up but if it's a long ball game I'll miss most of it due to not being able to move my head. Curse you cancer (shakes fist)!

Update

Chased up my scan appointment today and they've had no contact from the head/neck team yet....so called the head/neck team and got an answerphone. Frustrating. But after remembered that their clinic/patient discussion is on a Monday (because Joy the nurse told me I'd been discussed last Monday when I saw her on the Tuesday....following? Pay attention) so maybe they need the Monday conflab to make the next move.

Bit low today to be honest. Looking online at the many and varied diagnoses that "head and neck" cancer can cover there are some seriously shitty options.

Up 'til now on every occasion, every appointment I've thought that things will be OK but every bit of news seems to have been worse case scenario....I'd just like a bit of positive for once.

Going to bed now but it's no respite sadly. I wake up in the morning thinking about cancer and then I spend all day thinking about cancer and then I go to bed thinking about cancer and then I dream about cancer. Repeat ad infinitum at the moment.

It's pretty shit.

To continue....

The afternoon's "procedure" was changed accordingly. It became a bad idea to simply remove the lump so what Dr Wilson did was to take more biopsies, one from the lymph node to confirm the previous result and another one from my tongue; she also removed my right tonsil to see if that was affected (because it was a possible source of the cancer).

My first general anesthetic since I had some teeth out at about twelve! But it was OK; really painful throat for about two weeks as a result of the tonsil being taken out though, don't know how kids cope!

Friday the same week I was back in for a CT scan of my chest, hot flush when they injected the dye was a bit weird but no problem really.

Then I had a whole week off from appointments for the first time since it kicked off; thought it'd be great but in fact it was awful, didn't really know what to do with myself. Sometimes felt like I was watching somebody else go through it and other times thought that they were going to ring me at any moment and tell me it was all a mistake. Long week.

Got another phone call (don't remember which day) from the consultant's secretary asking me to come in for another general anesthetic procedure on the 22nd, she couldn't give me any more detail. Already had an MRI scan on my neck booked for 8.00am that day, which I was dreading because I thought the tunnel would be horribly claustrophobic, but it was no problem at all in the event. Nearly fell asleep a couple of times. Then a long wait before meeting Deb and Jess again on the day surgery unit at 11.30 (still not knowing what the plan for the day was).

Turned out that the tonsil and tongue biopsies had been clear so it was now best to remove the whole node, so that's what they did. Much easier surgery than the previous one and much less pain after, was home by about 7.00pm.

So now to the latest and current state of things. November 5th, three days ago I had what turned out to be my final appointment with Mrs Wilson. Still no precise diagnosis of where the thing started, but they know enough to put it under the heading of a head & neck cancer. They're going to do something called a PET-CT scan to try to locate the exact source.

It may be that they still won't be able to find it, it may even be that my bodies immune system has killed the original cancer by itself, but the treatment they're going to give me would be the same in any case....to kill any microscopic traces that they can't track down (if they can't find anything) and to try to ensure that it doesn't come back.

So now I was transferred from the ENT department to the Head & Neck department and went for a long talk (Deb with me all the time as she has been every step) with a specialist nurse. The next thing after the scan is a neck dissection (there are some bits on here people will need to look up for themselves, I'd be typing for ever if I detailed every process) which is a bit more complex than the bits of surgery I've had so far so will be five days in hospital.

Then the fun bit starts; between four and seven weeks of radiotherapy. Hopefully it'll be closer to four weeks than seven because the side effects sound really a bit nasty (she asked if we have a blender because solid food will be a problem). There's also the possibility of chemotherapy at the same time, depending on the results of the scan/surgery. Since then have read stuff on the 'net where people need to have a feeding tube fitted during this type of treatment because even sipping water is too painful. Lovely.

Looking on the bright side oncology patients get free parking at the hospital! Though how long I'll be able to drive is another question.

So that's where I am today, waiting for appointments (we do a lot of that). I'm not even sure I'm going to send this link to anyone yet; I just felt the need to write it all down while it's still fresh and a blog seemed a sensible place if/when I think I want people to see it. I have a fair few online "friends" (and one or two real ones) that I think I'd like to know about if they were unwell (that sentence is dreadful English) but at the same time I don't really want to burden people; I need to give it some thought.

I forgot the Marmite jar! The day after I was originally told it was cancer (8th Oct) Deb and I were shopping in Tesco and I needed Marmite. Huge big arse jars were far and away the best value (£3.00 for 500g as against £2.69 for 250g and £1.75 for 125g, price is still the same, I just checked. I'm not so sad that I remembered it!). Now I'm the only one in the family that uses the stuff and then only on a piece of toast every couple of days so the thought crossed my mind, "Is it worth buying such a big jar when I may not live to finish it?"

So that's where the title's from, will I outlive the Marmite? Makes me smile every time I open it though I'm not really even considering the possibility of this killing me because it's not an option; I've not mentioned it to any medical staff and have not and will not be googling "survival rates for xxx" any time soon.

Too much left to do!

Finally I'd just like to say how grateful I am to Deb for dropping the scooter, no idea how long it'd have been before I went to the GP without the wrist problem....lucky break.

Story So Far

To bring things up to date (the few people I've spoken to about the last couple of months can probably skip this bit; though they may be interested in the Marmite jar story, I'll put it in bold so it's easy to find) this is the sequence of events that has led to where we are today.

Some time on holiday this year in Zakynthos in July (lovely time thanks; here's the video if you missed it. Keep an eye out for the scooter, it's relevant)....

https://www.dailymotion.com/video/x12op1i

....I came across a little lump in my neck; where you get a bit of a swelling when you have tonsilitis, but only on the right side. Didn't really give it much thought at the time.

The middle week that we were there we hired a scooter which was great fun; but one time while Debbie (my wife) was getting on it she lost balance and it started to topple over, I grabbed it and managed to pull it back upright but in the process hurt my left wrist.

Anyway, holiday over, came home and through August the wrist continued to hurt whenever I strained it so finally decided to go and see my GP about it. September 6th I was sat in the waiting room and actually feeling a little foolish because it wasn't hurting at all, so I thought what else can I ask him about? Remembered the little lump in my neck that hadn't gone away still so I decided to mention it. Doc said that the wrist was tendonitis and would go away in time but he got a bit interested by my neck; and that's when things started going a bit crazy.

Had a fast track referral (think that was what he called it) to ENT out patients in Exeter five days later where a doctor stuck a camera up my nose for a look, then called in Dr Helena Wilson (lovely consultant in the department who we got to know quite well) for a confirmation of his opinion that they should do an ultrasound scan and take a needle biopsy asap and book me in provisionally for day case surgery to remove the thing.

Appointment came through for the following week (18th Sept) when a really nice doctor did the scan then said that in his opinion the biopsy was unnecessary because the result may well be inconclusive and if they were going to remove the lump anyway he saw no point in causing me extra pain. Also said that he'd seen hundreds of cases like mine over the years and that he thought that it being anything "nasty" was unlikely.

Then I got an unexpected appointment through for the following week (26th) to see Dr Wilson again. She said she did want the biopsy done because it may have an impact on what she did in the surgery so she took one then (actually she took two, after she'd shoved the camera up my nose again).

Following week (4th October) had an uneventful pre-op check.

Then, that afternoon, with the surgery booked for Tuesday 8th October I got a phone call from Dr Wilson's secretary asking me to go to out patients half an hour before I went to the ward because she wanted to discuss the procedure with me. Got to say this (rightly as it turned out) rang alarm bells and the week-end was difficult.

So on the Tuesday we went in, our daughter Jess came with us because it was going to be a long day of waiting for Deb, with the possibility of me having to stay overnight. Got the news that we'd both been half expecting, that the biopsy showed malignancy which meant I had cancer....though they couldn't put a name to it yet.

They gave us ten minutes in a room by ourselves and went and called in Jess from the waiting room; Deb sobbed for a few minutes but has been immensely strong (in front of me at least) ever since.

The objective then became to find out where it had come from because you don't just get lymph node cancer apparently (I don't think I've even mentioned that it was a lymph node have I? It was), you get it somewhere else and it spreads to the nearest lymph node, so the search for the "somewhere else" was on.

Done enough for now, I'll pick this up again in a couple of days.....and I didn't even get to the Marmite jar. Sorry.