3rd February 2013

DEATH ROW (How I became an Inmate)

Well, here we are on Death Row, no timescale, just a vague time slot before the old Grim Reaper comes-a-knocking for me. I think I came to terms with the seriousness of my condition by looking at Helen’s face collapsing in front of me and seeing her scrambling around frantically in her handbag for uplift (facial scaffolding cream) while talking to the consultant.

After my surgical biopsy at Queens Square Euston, we were sent home, being instructed to return to Addenbrooke’s  Hospital, Cambridge for the results. I was fairly confident that they had made a mistake and there was some magical ‘thing’ they could do.

‘Wait here a moment please’ after leading us to a room. Door opens, a new face appears. ‘Come on in please, take a seat,’ no eye contact….. I glanced at Helen, no response. Then from under the desk she pulls out the biggest sledgehammer and asks me to lay it across her desk. She raises it, writes NUT across my temple in one of those markers and… WHACK. Then, quickly, she says  “Results positive- GMB grade 4, only containment, no cure, no surgery. Terminal.

• Option 1: Do nothing and it’s 4-6 weeks.
• Option 2: Short intense treatment, radio/ chemo 4-6 months. 3. 9 month chemo/ radiotherapy if you can handle it = up to 12 months.

The recorded survival of a patient from some village in outer Mongolia, where time stops for 6 months of the year, and if you get there and start treatment the right day and time, and eat the mountain goat’s shit, then you may have a chance!”

So we think about the options for 0.5 of a second and opt for the 9 month plan. I was sure Helen was going to say let’s go for the shortest! At the moment she’s had to put up with months in of my erratic behaviour,: losing things, road rage, mood swings, and now…. I’ve only gone and got a walking stick!

We were asked to give them an hour while they made up my treatment plan. “This is going to take more than an hour” I thought when we got back.  We got everything in boxes, medication, notes etc, etc and as we waited by reception the receptionist looked up and said ‘Mr Smith, here you go’ she passed a single sheet of paper.  ‘Good bye, we will see you on your 1^st appointment’ pointing to the top of the sheet!

So my initial Death Row is to be spent at home not hospital!

So, off we trotted looking at the treatment plan. It was radiotherapy Monday-Friday, chemotherapy 7 days a week in the form of a tablet taken at home.

First appointment

I had to get a mask fitted, moulded on my face for the radiotherapy. So first I went  into the moulding room, I was placed flat on my back, legs over a  moulded hump for knee support, head in a dip at the back, clamped down  tight, over face- laser beams criss-crossing, and  markers being put on different places. It was so claustrophobic. That finished, I left the room. On the way I glanced at a mirror; Crikey! I thought.  I looked just like Helen after an intensive pick and squeeze session!

After about a week of this, I was getting a little too confident and strolled into the radiotherapy room, kicked my trainers off, hopped onto the bed, put my feet where my head should have been, arched over the knee support and inching my head along backwards. So there I was, balancing like a see-saw. That was the most pain I’ve had since diagnosis.

The nurses suddenly saw what I’d done and shouted ‘Colin what are you doing?!’ I replied ‘Aargh!”  Well, from that moment on there was laughing and giggling from anyone, even the radiographer behind the glass screen was laughing- they had to give me a good half hour to stop!

Well, looking back on this past week there was not much going on except Chelsea continuing to give away goal leads.

I’ll finish now for the week by thanking everyone who has supported us and the charity. We are creeping towards the target. Keep training hard Tony and Dan and thanks for all your behind the scenes work, Kirstin and for pushing everyone on. And finally, well done to Bootsie for passing the careers refresher course.

Coming up this week for charity:

• Auction off part of my Chelsea memorabilia. All proceeds to Headcase.
• Black cab collection at Heathrow airport.

Apparently I am obliged to write a weekly blog, about feelings and things in general, so….here goes.

Now that the “Just Giving” site is up and running, I would like to thank all those who have donated and for the kind comments they have posted. It really does mean a great deal to me and makes such a difference to the way I look at life. I am turning into Bob Geldorf from Live Aid with his “ Give us your f***ing money!” Joking apart though, every penny does go into finding a cure which will be a truly marvellous day, too late for me and many others with the same condition but hopefully for future generations and some of the little mites we see around the hospitals.
Let me start with a few “Thank You’s” in no particular order………

1. I’m sorry God, you’re not included in this one!
2. To Tony Russell and his son, Dan for recommending this charity and for tirelessly working to get everything up and running while simultaneously training for the Iron Man challenge in Nice which will also be for Headcase.
3. My wife, Helen, for her patience and care. Also for her obvious frustration about only having 1/3 of the bed instead of ½ now that the steroids have kicked in again!! I’ve gone from being “Darling” as a pet name to “Moonface”!
4. Debbie, the lovely landlady of The Crown pub in Church St, Litlington, near Royston for all her efforts and her link between us and “The Stars”!

As far as things are going for me, I’ve had a relatively pain free treatment up to now. Radiotherapy has been completed and I am on a break from 2nd stage chemo which runs at 5 days on and 23 off. My next bloods and chemo are on 5th Feb. Tiredness is about the only symptom apart from a sense of confusion when I’m talking or listening in a crowded situation. Oh, and my concentration can be limited and I keep losing things as well as having the odd hallucination.. (one really strange one the other night was when I really thought Chelsea had gone out of the League Cup!)

I am trying to go to as many games as possible however it’s a struggle not only for me but also for my “carer” Bootsy who looks after me. I think he’s going for a day’s training next week due to two recent incidents when firstly, I tumbled out of the tube flat on my face and then when I fell back down an escalator, both times landing in a heap but laughing.
I am so grateful to Bootsy and the others on the list above. Actually I am grateful to everybody who has been so kind, very grateful, it’s really humbling.

We have a few events coming up with the support and appearance of ex Chelsea players and with the friends and family who have harangued the CFC to continue to support us.

For my part, I am in the process of selling off all the Chelsea memorabilia that I have collected over the years and we shall be making our personal donation by next weekend, if my computer stays up and running. Please be assured that I do read everything you post but I am often quite slow in replying.
PLEASE KEEP UP THE GREAT SUPPORT! And ………Donate, Donate, Donate! No Helen, not doughnut, doughnut – I’m fat enough!

Looking back on all this, my story and my feelings, I think my D Day came right out of the blue. No warning, just bang! There was no explanation and I have never lost consciousness. Helen was with me 24/7, discussing my case with the doctors and then making things clear to me with the best of her medical knowledge. My initial reaction was that just two months before I had experienced the best day ever, Chelsea and Munich and that now was the worst day that could be imagined, but it was not yet 100% certain so there was just a little bit of hope to cling to. That hope disappeared though when the consultant took us into that dreaded “Little Room” in Queens Hospital, London……….

Next week: Coming to Terms with Death Row.