21 April 2016 (SCT Day +135) – So Slow (Cancer and Me 69)

24th April 2016 1 By Andy Burrows

One of the things I notice when reading the blogs of other lymphoma sufferers is that very often after finishing the account of their chemo or stem cell transplant there are no further entries. I am constantly left wondering how long does recovery take? When did they feel normal again? When did they stop feeling so tired?

I know why there are very few blog entries covering this aspect. It’s because firstly, it’s so boring. Nothing much happens in recovery except gradually (too slowly) feeling better.

But, secondly, I also know it’s because those who have been through cancer treatment just want to move on with their lives. The times of treatment are pretty intense, and worth blogging about. But when you’re in recovery you’re just desperate to move on… and recovery is so boring! Who wants to know about boring recovery?!

So I’m adding this entry to help those who face cancer treatment and wonder whether recovery really does take as long as they say.

The truth is, for me, that the length of time it is taking to get the point of being able to do a proper week’s work is getting me down. Last week I deliberately stopped going to bed for an afternoon nap, because I reckoned that I should by this stage be trying to just get through the residual tiredness. After all, everyone gets tired, but it doesn’t normally stop them working. Perhaps I was silly, because I was still recovering from having a cold the week before. I even agreed to help my old colleagues out with a post-project workshop session one afternoon. And I also thought I’d start some light gym exercise (on top of the 3-mile dog walk that is now a daily habit).

I can assure you that light exercise means very light – like 5 press ups and a few sit ups and stuff. It doesn’t take more than about 20 minutes at this stage and I’m not yet pushing myself into any real sweat. I intend to build up very slowly.

But anyway, by Friday I was, as I like to put it, ‘knackered’! I had gardening jobs to do on Saturday, which pushed me fully into exhaustion.

So I’m back to the afternoon naps again – hopefully not for too much longer – but still wondering when the right time is to start job hunting properly.

Hopefully the gym sessions will help to rebuild the muscles that have wasted away through reduced activity due to being ill so much over the past few years. My theory is that strengthening the muscles should eventually stop me getting so tired eventually, because being stronger means things take less effort. In the short term it will be hard work, but it should get me back on my feet quicker overall.

I had a check-up with my haematology consultant yesterday. He was happy to report that the PET CT scan looked very good, and that my blood test from the previous day was all perfect. He was also happy to see me looking well. It’s just a case of hoping for the best now, as well as being a little vigilant for a couple of years or so. He said he’d see me in three month’s time, and said he hoped that the stem cell transplant would mark the end of my rollercoaster journey with cancer. He has two other follicular lymphoma patients that have had stem cell transplants, and both of them have now been clear of the disease for many years since their transplants. So he was quite optimistic.

As you’ve probably seen, I did manage to publish the two books I mentioned last time – Cancer and Me and Facing Cancer with Faith. This was massive for me – I actually managed to successfully complete something that I started!

I self-published them at no cost, using createspace.com (an Amazon company) and Kindle Direct Publishing (and the equivalent for Kobos and iBooks).

Why did I decide to self-publish rather than try to find a publisher, especially for Facing Cancer with Faith? You may have wondered that. And here’s where I get all self-analytical (probably too much so)! Basically, it was completely selfish – I just wanted to finish something.

I’ve started on so many new ventures and projects in the last ten years, and none of them have come to fruition. The internet business, the part-time FD business, the music production company. Still going nowhere after years. Once I’d had the idea of writing a book, self-publishing gave me control from the start of the process (writing) to the end (having the book available to buy). I wasn’t relying on a publisher to sign me up.

But when I analyse it further, sometimes I think the attraction of not having to knock on the door of the publishing houses came, at least partly, from fear of rejection or fear of failure. Being in control of the whole process, doing everything myself (write, edit, format, design cover, write blurb, set prices, upload, proof read), insulated me from criticism, rejection and failure.

It’s actually times like these I start to realise that I may not have come out of fifteen years of knockbacks quite as upbeat and as psychologically unscathed as I may have thought. Time after time, just when I thought I was getting somewhere in my career, along came a redundancy, a recession, an illness, a relapse. How much career counselling have I had? How many interviews have I gone to and been unsuccessful? How many times have I had to put myself in the hands of recruitment consultants and gone through weeks of fruitless phone calls, and even worse, the absence of phone calls(!)? It has felt like every time I learned a new skill, or tried a new venture, it was unsuccessful.

But it felt like I was doing the right thing writing the books, in fact it practically felt like I couldn’t not write the books. I have felt almost compelled to blog. It made sense to fill the downtime with something useful. I just wanted to be some help to someone. But then the thought of touting the manuscripts around publishers, waiting for the feedback… How many more rejections? How many times would I have to try and justify my project to somebody else in order to allow the book to see the shelf? How long would all that take? All the time the clock would be ticking, and I was afraid that 1. I wouldn’t have the energy for the editor/publisher discussions; and 2. I would end up running out of time, going back to work leaving an unpublished book languishing on my hard drive. I just wanted to actually complete a project for once – start something and successfully finish it!

It may seem to some that self-publishing smacks of self-indulgence, especially when telling my own story. But in reality, in my case the fundamental drive would seem to be fear of rejection. Why else would I now be so reluctant to do the marketing required? I feel an ache in the pit of my stomach every time I turn to marketing – I find myself hating self-promotion… But when I push my self-analysis deeper it’s not because I’m so humble. It’s more because I don’t want my pride hurt again. Now I fear (though not as acutely) rejection by book buyers, the public, rather than publishers! All I’ve done is pushed the fear further down the value chain! Why didn’t I see that coming?

I’ve now realised that life involves putting yourself out there in some form or other. And putting yourself out there means the chance of rejection, the chance of failure. You cannot get away from it. And you shouldn’t try. Neither should you give up because you might fail. The only guaranteed way to fail is never to try, or to give up along the way.

I hope no-one minds me baring my soul in public. It helps me to talk myself round. And most of all, if anyone else post-cancer has moments of self-doubt, even despondency, it demonstrates that you are not alone. Suffering cancer can have some weird psychological effects. Some want to curl up and not face the world any more. Some become obsessed with doing things they’ve never done before. Some just want to prove to everyone that not even cancer will beat them. Some want to cram even more stuff into their lives in case it comes back. People who haven’t had cancer may not even understand why you suddenly do things differently. But you’re not weird.

We just have to be careful that our response to cancer doesn’t send us in directions that are unhealthy, and instead harness the emotional turmoil to give us energy and determination to do some good in the world… in my humble opinion.