Blog 21 - Some people are on the pitch

Some people are on the pitch.

They think it’s all over!

It is now!!

By March I will have come full circle. And I will have ended up somewhere very, very different.

It started and finished the same way: Back in June and then again today 19^th December 2013: I had a tube stuck down my nose with a light and a video camera on the end of it. A bit of lubricant to make it easier. Breathe normally said the doctor! (After all you are normal now, I thought today!!). “All looking good” he said. Back in June he didn’t mean that as one tonsil was inflamed. This time the tonsils and the cancer were no longer there! Simples.

Then he felt my neck. A bit sore. Back in June there was a lump. This time. An absence of lymph nodes, muscle and vein and an absence of cancer. Simples.

Parking was easy at Lister Hospital today. Just like in June. That’s why I chose to be treated there. Poetically on the opposite side of the same stretch of road almost outside the main entrance, in bright sunshine – although 20 degrees cooler. Full circle, but somewhere else.

Another snippet: I’m allowed to drive again. The meaning behind that is I’m no longer on strong painkillers – in fact I’m not on weak painkillers either! That’s not a snippet that’s brilliant. It means I’ve not got cancer, I’m not even in remission, I’m not even in recovery any more. I’m just in follow-up – the term the doctors use. They want to see me just every 6 weeks to look down my nose at me (literally, not figuratively).

I had my first MRI scan at QEII hospital in Welwyn Garden City last July and less than 6 months later I’m having my FINAL scan in the same hospital. Just one for the record. On Christmas Eve. No more needed. EVER. Full circle. We’ll hear the results on 9^th January.

I had my teeth out in August, sadly they won’t be coming back. But neither will dentures for at least 3 more months. Ah, well.

Hands up if you’re gonna get fit? I got fit back in July. I can’t ever remember being as unfit as I am now. Dizzy just standing up and staying still. Enough strength to hold a putter, but not a bowling ball. But you just wait! I’ll be running circles round yous before the summer is out.

Skinny as a rake, too. Making all the blokes jealous. Lost 42 lbs in 50 weeks. Maybe not honed yet.

I still felt fit in September after the surgery and when the treatment first started. In October I wasn’t too bad, although deteriorating towards the end. November was the pits with pain all day until eventually my medication was corrected. But there was a sting in the tail of that month when the fever hit and I didn’t think I’d make it. I said in the last blog that I felt the demon leave. This month, on Saturday 14^th December I felt Frank return. My eyes turned from ashen remains to bright flames. My future became mine again.

I’ve got a sick note still. I must applaud Row’s boss for allowing her the flexibility to look after me. I did thank him at the time. I must also praise The RSPB for their sickness policy. My sicknote is to the end of January after which I can make a phased return to work. Super stuff.

There are a few minor inconveniences to do with muscles and nerves that may clear up or get worse over the coming months, but hey, who cares. Now, where’s my 3-wood. Fairway Frankie has some golf to practice.

Row and I went to Spain in June when this journey began, to be with friends to celebrate big birthdays: We’ve already booked to go to Spain in March now the journey is ended, to be with friends – deeper friends. There’ll be a party atmosphere – I love a party with a happy atmosphere! www.youtube.com/watch?v=RFPLk5mJ1D4

And there’ll be one or two more parties in 2014. Perhaps one soon-ish to thank you all, and especially my Rowena for the love and support since the journey began, perhaps one later for me to celebrate life and a new decade when I’m 60 in October.

Full-circle? In 1966 I watched the World Cup competition unfold before childlike eyes of amazement. I saw Brazilians on the streets of Liverpool. I saw colour inside Goodison Park. I saw black and white images as England won. In a different place? What dreams will come true in 2014?

May your friends be with you. Thank you everyone. I didn’t know how many friends I had when this journey began – I am in a different place now.

And here’s to my best friend. Row.

Blog 20 – Helter Skelter

Helter Skelter* – Beatles white album

I was feeling hopeful in the last blog – and I know I was right to be – but then I got sick. Very sick.  I lost another half a stone – so now down to 10st 8lb a full 3 stone down from when this began in June to a weight I last knew back in 1975 – have a hunt for a pretty cool former Facebook profile photo. The sickness was probably a virus and took hold in a number of ways. First it gave me a temperature – sweating, shivering, listless – although the thermometer said I lied at 36.4c. Second it took away appetite. And this, together with the Third – it made everything smell like burnt rancid stable straw –coated my mouth, gums, throat and nose so I couldn’t eat a thing and couldn’t face an overnight feed after failing to keep one down. The fever kicked in on Friday morning and lasted until 3.30am on Sunday morning – I felt it depart – like a demon, done or defeated –defeated I guess, ‘cos I’m not done.

What a difference a week made: By Thursday Liverpool had returned to winning ways with a truly fantastic 4-goal feast from Suarez and Row & I ventured out for 10-pin bowling with the fun-loving section of the RSPB’s Information Systems team. I was still weak and managed to drop one of the heavier balls, scoring just 6 after two turns– but then I turned it round and finished with 92, 2^nd in our lane of 5. But that was enough and we went home before the second game started – thanks Bev for organising it!

But what you probably wanted to hear was that my appetite had returned to such an extent that the dietician refused to give me any daytime liquid food (Ensure) and so we had to go shopping for jellies and yoghurts and rice-puddings. And a week later I’m on proper vegetables (well, boiled until they fall apart) and jacket potatoes (topped with lashings of butter) and fish that falls off the bone. And thick soups and porridge. And puddings, yes, puddings! I don’t do puddings. And tonight I’m having a go at making a roast chicken dinner. So I hope to be ready for Christmas.

And when the dietician heard about my exploits they also reduced my overnight feed by 25% - although I was so full the last two nights I didn’t bother. I’m still waiting for that first glass of champagne and the pint of Thwaites.

Now there follows a piece of news: But first: I’d intended to discuss next clinical steps with the doctor – you see something was starting to nibble at my consciousness – something I, as project manager, knew I should consider – a dark question; A question which I don’t want answered yet. Which I’d managed to keep away – I guess it came in with the demon. It is deeply buried inside another question – like a palimpsest – the question for the doctor could be faced and was a natural next step. So first, the piece of news that prevented the question escaping.

They’re sending me for a scan on 19^th December. That is truly stupendous news and caused a dropping of jaws. I wasn’t expecting that until February. We jumped straight to the conclusion that was “When the scan gives the green light, I’ll officially move out of treatment and into remission.” Which is precisely what we want to hear. The question it flanked was “So how will I know that this treatment has worked?” The darker question is “The scans that you do won’t detect the presence of cancer – just heat and lumps. It won’t tell you that treatment has worked. So. What should I look out for?”  It might give the wrong answer – Treatment hasn’t worked and so - the darkest, project manager, question will need to be answered – “What contingency plan would we follow?”

But hey! I get knocked down, but I get up again! (You’re never gonna keep me down**)

Since radiotherapy started ulcerating my mouth in October, I’ve not slept much as my mouth clogged up every half hour - an hour at most – but recently the amount has reduced and I managed 2 2-hour stretches both of the last two nights – whehay!

Treatment at Mount Vernon has been excellent and I’d like to give something back. I give a fair bit to charity (both hours and money). I’m not up to doing direct work yet, but I’ve decided to make the Paul Strickland scanner centre my charity for the next 5 years. http://www.stricklandscanner.org.uk/ They provide and run and maintain the machines. Yes, they’ve just supplied a new one costing almost £1.5m but it costs £800k pa to run. If you want to join in, you can either donate anonymously using the methods on their website or send it to me and I can keep a tally – Bank sort code 20 74 81 – Account number 13113310

I guess a word of warning is needed to finish. I went to the barbers on Saturday, for the first time since treatment began – and was dismayed to see how shaken the hairdresser was at seeing me. She wasn’t prepared for how I looked – gaunt, undernourished, cold, with a chunk missing from my neck. I don’t mind her reaction – but I hate to think of causing any distress – so be prepared – I look 21 again - except for the pink cords.

Oh one more, to finish on a good note: Pain relief is massively down from its peak of 87mg patch of Fentanyl and 4 doses per day of 15mg of Oxycodone hydroxide to just 12mg of Fentanyl and only 2 doses all week of 5mg of Oxycodone. **Chambawamba!

*When I get to the bottom I go back to the top of the slide / Where I stop and I turn and I go for a ride / Till I get to the bottom and I see you again.

(Sorry about the font changes)