Last December I wrote a blog about the year I had spent on chemotherapy for Non-Hodgkin Lymphoma. It was a difficult blog to write. It brought back a mob of emotions that I suppose I had tried hard to lock away and muffle with a gag. I was worried letting them out and onto the page would churn up renewed feelings of anxiety and make me sound self-obsessed and maudlin (I’m not someone comfortable with sharing emotions), but, happily, the words behaved themselves and writing them down turned out to be a good thing.
The overwhelming number of kind messages I received after blogging, through comments, tweets, and personal messages, made me glad I’d gone against my instincts. Returning to thoughts and feelings I had gradually suppressed didn’t depress me or cause me renewed angst, rather it allowed me to look at them again from a distance and pin the buggers down. My year had been horrible, really painful at times, and marked by fear, but it had also been wonderful, full of joy, opportunities and love.
Revisiting them again now makes me realise just how lucky I was.
Re-boot: May 2013
In a similar way last year started in October 2012 with my diagnosis, this year started in May 2013 with my stem cell transplant. It was a re-boot for my immune system and a kind of Year Zero for the rest of my life.
My consultant described the treatment as a consolidation of the chemo I’d had for the previous eight months. “There is no guarantee the cancer won’t come back”, he explained, “but this will give you your best chance.”
“Ok.” I said, sitting with Claire, with a drip in my arm receiving the last dose of the six RCHOP cycles. “Then what?”
“Then we wait,” he said.
“For how long?” I asked.
“Five years until we’re certain.”
“That’s a long time. And what are the chances it will come back?” I asked.
His eyes dropped to the floor, “50%,” he replied.
“Oh.” I said.
This was unwelcome news. I didn’t like the sound of 50%. I’ve never been a lucky gambler and 50/50 is not great odds. Not considering the stakes.
I went through the stem cell transplant, which wasn’t nice, and the very gradual process of recovery. By last December I was feeling better, I still got tired easily, had frequent headaches, and pains particularly in my abdomen: but nothing worse.
At the start of the new-year I began to work more, which was great, but a mixed blessing. Being back in the classroom was fantastic; I was doing quite a lot of supply around Norwich, working with children from Nursery to Year 6 in some wonderful schools. But, my immune system was still weak and I started getting all kinds of cough, colds, sore throats, and infections. This was a drag and pulled me up short. I desperately wanted to get back to normal, but normal was still a long way off.
By the end of Spring I started to get a bit stronger, but the pains in my abdomen were not going away. I chose to ignore them for a long time, putting them down to general aches caused by the treatment, but by April I decided I needed to talk to my consultant.
He frowned when I told him, “Right, I’ll book you in for a scan,” he said, “It’s been nearly twelve months since your transplant and a scan will tell us if it’s come back. You okay with that?”
I nodded, dumbly.
If you ever have to have a CT Scan, don’t worry it’s all right. You go in an hour before and drink a litre of this white liquid that tastes of peppermint. They then call you into the theatre, there’s a large polo-shaped machine with a bed through the middle. You lie on the bed and they fit you up with a needle in your arm. The nurses then retire to another room, there’s a loud whirr as the machine starts working and the bed moves backwards and forwards through the hole. The weirdest bit is when they inject you with this warm liquid, it’s not unpleasant, but it travels around your body in a flash, starting at your groin. Makes you realise just how fast your blood is flowing. And that’s it. You sit up, get dressed, and go home.
Then you wait for the results.
I didn’t like the waiting. My mind started to imagine all kinds of different scenarios, none of them pleasant, while my brain tried to reason with it and get it under control. Eventually, after a week, a letter arrived and invited me in for an appointment the following Wednesday.
I walked into the hospital. On the outside I was all smiles and confidence, on the inside a barrel of churning adrenaline.
Finally, I’m sitting with my consultant in his office; he’s professional as always, no clues in his body language.
“Well,” he says, “we’ve got the results of your scan.”
“And they are fine. There is no change since the one we did after the transplant…”
He then says a bunch of other stuff, which, to be honest, I can’t remember.
A moment later, he’s smiling and shaking my hand. “See you in six months,” he says.
I mumble a reply.
Then I’m outside, the sun is shining, and I want a pint.
The rest is life.
The pains in my side quickly disappeared (they were probably largely psychosomatic); I continued to get better until by about mid-September I felt healthier than I had for years; and (inevitably) Norwich were relegated at the end of the season.
One Thursday in October I put on my shorts and played football with my mates. This is in no way a big thing for anyone other than me and I was crap, couldn’t kick the ball straight, run more than five yards, or tackle. But, I was playing football (something that two years earlier had seemed impossible), and that made me happy.
I started properly writing and kept going. Inspired (and intimidated) by Debra Kidd, who seemed to knock out a book in her spare time over a couple of months, I sat myself down and told myself a few home truths: “Stop making excuses and get on with it. And, lose some weight while you’re at it.”
After that inspirational pep talk I made a list, stuck it on my wall, and got on with it. And slowly, painfully slowly, it is happening. I’ve written 45,000 words, and some of them are not awful. It feels like I’ve passed the tipping point and can’t go back now. I even enjoy doing it, some of the time.
I’m still working freelance, which means we are poor, but I don’t miss the stress of a contract job.
My friend, Tim, and I hatched a plan about 20 months ago, while we walked around the lake, to start a CIC company and apply for research funding. Six weeks ago we heard from the Hamlyn Foundation our first application had been successful and we’re starting work in January, using mantle of the expert with Year 7 students struggling with transition in three High Schools. This gives me butterflies of excitement and trepidation.
I did a bunch of other stuff in 2014 which gave me great joy – presented at Northern Rocks, taught alongside HeyMissSmith with her wonderful class, worked with the inestimable Luke Abbott at Ringsfield Hall, contributed to the fantastic ‘Don’t Change the Lightbulbs’ curated by the remarkable Rachel Jones, lectured at Newcastle University, and taught in over twenty schools.
I also met many lovely people I’d made contact with through Twitter. The list would be too long to recount here, but it has been a genuine pleasure.
I promised I would spend more time with my family in last year’s nurture blog and have I? Honestly, not as much as I should. I spend many hours a week locked up in my room typing and not with them. Is this a betrayal? I guess it is, but life is about compromises and balance. I don’t think I’ve ever got the balance right, but I try. And I couldn’t be more proud of them all, they are all fantastic human beings. Far better in every way than I was at the same age.
Some new resolutions (these are really repeats from last year):
- Keep writing. I reckon I should be ‘finished’ by October. October seems like a good deadline.
- Spend more time with the family and do more family things. Especially when I’ve finished writing. Keep to this.
- Lose some bloody weight! Seriously. “It’s a sign I’m getting better,” is wearing thin as an excuse.
My last resolution is to complete my first resolution from last year:
“I’m 49 on January 25th – this is good, being alive is very good. I would like to be alive when I’m 50 too. That is my big ambition for 2014 – to be around for 2015.”
Not long to go.
My form of non-hodgkin lymphoma is incurable. I was first diagnosed thirteen years ago with the low-grade version. They told me it was indolent, but would one day flare up. The tumour treated last year was the result of the cancer switching to a high-grade. My low-grade cancer will flare up again, probably within ten to twelve years and will need to be treated in the same way. However, the high grade has hopefully been cured by the chemo. The 50% chance of the high grade returning within five years is a bell curve, there is much more likelihood of it coming back within the first year, after that the chances diminish dramatically. Therefore, although I can’t be 100% certain the high grade won’t come back, the scan results indict it is becoming increasingly unlikely month by month. Hence my joy.