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.