Twist or stick?

Now, please don’t get me wrong.

I’m absolutely delighted with my latest biopsy results, which I received on Thursday.

I spent nearly two hours waiting to be told by an oncologist about the genetic markers my biopsy had revealed and what, if anything, we were going to do next.

She told me my tumour does have the IP/19q deletion that we’d hoped for.

It means any radiotherapy and chemo I have is likely to be more successful at attacking the cancer. It just about doubles the life expectancy for oligodendroglioma patients, compared with those who don’t have it. I also have the IDH1 genetic marker, which is also indicative of a longer life expectancy.

The treatment they’ve got planned for me doesn’t sound much fun. Six weeks of daily radiotherapy, followed by six cycles of six-week chemotherapy using a combination of pretty rough drugs. In the meeting I was assured the side effects wouldn’t be too bad, but the treatment information I took away with me seemed thicker than such optimism warranted.

But that’s for another day. My oncologist concurred that we shouldn’t rush to treatment any time soon. We agreed what I’d hoped for: that I’d have another MRI scan in August, and when I meet with my neurologist in September, we’ll see if the tumour has grown or is taking up more blood.

Only then will we decide whether to twist (and go for treatment) or stick (and wait for another MRI, in another three or four months).

All in all then, pretty amazing news.

But with every high comes a low. I’ve received the best news so far in this whole journey, for which I am duly grateful and relieved, but I’ve also been given another wait-and-see appointment to interrupt my future.

I’d rather be in this position than nearing the end of my life, but yet another results day to look forward to reminds me about the lack of direction in my life just now.

After diagnosis, I wound down my old business doing copywriting for charities. It felt time. I’d been doing it for nearly 10 years. I didn’t know what was on the horizon, so I wanted to turn my attention to other things.

Back then, I wasn’t sure I’d survive a year or two. I wanted to prioritise being with my wife, children and friends. And to finally scratch that niggling itch of writing a book about equal parenting, before I ran out of time to do it.

By September I’d started scratching in earnest and the book was finally published last month. It’s doing OK, but it’s pretty clear that I’m no JK Rowling. The likelihood of my making a living from writing niche non-fiction polemics seems pretty slim, however much I’d like to.

And anyway, what if I started another book, then at that September meeting I’m told I have to go into treatment and…

Or I could launch a new venture: the much dreamed of coffee shop we’d all like to own, the freelance writing career reborn, even going back to charity copywriting, or maybe something else entirely.

Still, there will always be that September meeting. Or the next one. Or the next one after that.

UnknownIt’s hard to get motivated when you can only think in three month chunks. It’s hard to have direction when you can’t see very far into the future.

And then I feel down because I ought to be happy, because this time last year I thought I was going to die, and now it seems I’m not going to die soon, yet I can’t shake this melancholy feeling, because I don’t quite know who I am anymore.

It’s not the earning money that’s the problem. It’s that I’m not quite sure what I’m for.

I guess cancer does that to you.

I pedal out the miles, perhaps because I think that somewhere down the road I’ll discover what I’m supposed to be doing. Anyway it’s better than staring at a blank screen, watching that blinking cursor as if I’ll find the answer there. At least I stay fit this way.

And, yes, I know I’m lucky.

I know I’m lucky to be alive, compared with most other brain tumour patients. I know I’m lucky not to have to desperately find a job, like many cancer patients and cancer survivors do, because I do have some money that will keep me for a while longer.

I know the answer is there.

Just as soon as I’ve finished feeling sorry for myself, I’ll go out and grab an opportunity. Or I’ll think up some new project, and that new project will become that new itch that I just have to scratch. And all of a sudden that next bloody hospital meeting, and the one after that, and the one after that, won’t matter, because I’ve got something else filling my head.

I hope I don’t sound insensitive. Over the last year I’ve experienced a certain novelty to being a cancer patient. It’s been new, even exciting. It’s been worrying at times, but it’s been something that’s taken all my attention and energy. Understanding it, dealing with it, and being with my family and loved ones, became everything that mattered.

It was all consuming, so my life direction wasn’t important.

With a longer term condition, that novelty wears off. That intensive demand for my energy and my attention has been replaced.

It feels like it’s been replaced by a kind of waiting that can sometimes stop you getting on with the life you do have left.

8 Comments

  1. Gideon, could you do a bit of training as and when you feel like it? You are flippin’ excellent at it. Most charities would bite your hand off for a visit from you and some training of their comms teams.

  2. Good to hear the good news about markers etc, sounds like you have almost too much time to think.

    I enjoyed my bicycle race round Spitafields market on saturday. One guy was dressed as a penguin. Unfortunately I got a flat on lap 3.

  3. I guess that one question is, ‘Do you need to make money and if so how much?’ If you don’t, clearly your options are wider.

    I have found that my friends often know me better than I do. I don’t have health problems but I do have work (none of it about) and money problems and I am a nearly-59 year old woman who thought that she would be retiring next year but successive governments have thought differently. My best friend from schooldays wrote me an email last week saying do this and do that – these are the things that you love. It seemed so obvious. I may not make a lot of money but I will be happy.

    Good luck! xx

  4. Hi Gideon,

    Firstly Congratulations on the biopsy news.

    Very valid points on the person living with a tumour outlook, I celebrated the first anniversary of my oligo removal last month and the radiotherapy that followed, I have spent that year fighting, firstly to get to see a Doctor who would consider there was something wrong with me. On the day I went into hospital my ex wife went for custody of our child in a very aggressive way (was demanding court appearance during radiotherapy)Then after winning full custody I was told by my employer that I would need to re apply for my job of 13 years after an occupational health report which was to say the least ill informed. Now all of the fighting is to a greater extent resolved I do feel a bit of an anti climax.

    Your blog is a bit of fresh air for me as I too cycle, 2 years without driving will be a long time and I had quite forgotten how perilous cycling is, especially where I live as the place floods with tourists who are usually very inconsiderate of other road users, especially out in the country.

    I believe my surgery was complicated, I was in for 42 days in Derriford Hospital who I must say were fantastic and continue to support me, however as you say it is a new “normal”which I have tried to explore but the ever present next scan is always at the back of your mind and everyone seems to have advice for you on your condition, but there is very little guidance apart from “get on with your life”.

    It sometimes feels like I am in a black room trying to make my way through blind, if you take a wrong step, you are off a cliff, metaphorically or not!

    Anyway Keep up the good work, you are an inspiration.

  5. Hi Gideon

    So glad there is so much positive news.

    Just wanted to say I agree with Natasha about the option of you doing some training (or what about “after dinner” speaking?) because you really are good at this.

    Best wishes

  6. Janet and Natasha,

    Extremely good to hear from you both, and do you know what – you’ve both got me excited about the possibility of easing myself back into that kind of work. Thank you so much. Perhaps I just needed reminding about it… I’ll keep you informed, but at least for now I’m feeling a little more positive that there are still doors open there for me, if I wanted them.

    Thanks again, G

  7. Delighted to read that your biopsy gave the best result you could have hoped for.

    Your conundrum about what to do next must often be felt by others in your position.
    A weird place to be.

    Would growing & selling chillies fit the bill?
    Ours, formerly yours, is doing fine!

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