Today is a turning point in my (long) life. If it all works out, then it could be the start of a new phase of good health. And if it doesn’t, well, at least it lays a 50-year-old taboo to rest. Let me explain.
For 14 years, I’ve lived with Prostate Cancer, gradually moving through the stages from one to four. As the cliche has it, there’s no stage five with cancer. However, since this post is designed to reduce fear, it’s important to point out that, for my type of cancer, ‘terminal’ is not necessarily a death sentence. I intend to be around for quite a few years. And what’s meant by ‘terminal’ anyway? No one gets out of here alive and none of us know when our time is up. But we owe it to ourselves to live our best lives, and while I’ve had very few physical aches and pains since my disease became metastatic, it is finally showing signs of greater aggression.
So, that’s why today I have my first chemotherapy infusion. The decision to start chemo comes with a 50-year trauma that I’ve never fully dealt with. That’s when my mother ended her struggle with breast cancer — a word that no one in our family was allowed to utter for the 20 years she carried the disease and refused all treatments until finally, she had to have chemotherapy. By then it was much too late but even during her final days, we weren’t allowed to talk about chemo.
I was just a kid and wasn’t able to process the experience. All I knew was that I equated chemo with a horrible, painful, death. I’ve been offered chemo several times during my own treatment decisions and each time had a knee-jerk, irrational, aversion. However, having consulted with one of the leading experts in prostate cancer, I’ve been assured that it’s the right thing to do, right now. Chemotherapy is far from the ‘last chance saloon’ that it’s often portrayed. Just last week I had a very large needle inserted into my lymph gland so that the wonderful team at the Royal Marsden Hospital could extract some ‘fresh’ cancer cells, which will now be analysed to try and find which one of 140 possible genetic mutations I inherited from my mother, from the day I was born. That was only the first time that I was gob-smacked during conversations with the team (the second was when I realised that the biopsy was, effectively, sucking my cancer out of me — I was sorely tempted to ask, ‘Could you just keep going until it’s all gone?”)
While there have been many advances in immunotherapies, few of them seem to apply to the most common male cancer. So, chemo represents the best, quickest chance I have of reversing the spread. If it works, I should start to see, and feel, benefits pretty quickly. But it doesn’t work for all men, so if Docetaxel fails, or provides an adverse reaction, there are a few other flavours to try out.
The infusions will take place every three weeks and the pattern for most men seems to be: 3 to 4 days of feeling wiped out (mild nausea and extreme exhaustion) followed by a week of feeling ‘meh’, and then a week of feeling normal….and then it all starts again. There is a progressively cumulative effect of tiredness as the infusions continue. Assuming it works, and I can tolerate the side effects, I’ll have the 10th and final infusion, sometime next March.
I will be restricted in the work I can do (no long-haul travel, so I’ve had to cancel a few work trips) and, truthfully, I have no idea if I’ll feel like going back to my normal working routine when this is all over. As I said, it could be a turning point. But, the work on organisational culture with my two fantastic colleagues at The Power Of Us Agency continues. Alex Bell and Leanne Hamley will be working directly with clients while I become the data nerd in the background, processing our increasingly popular cultural audits (at last I found some work I can do without getting out of bed!).
Given the subject matter of both of my books, it’s no surprise that I’ve found solace and support from a worldwide community of ‘lead patients’ — people who share their experience so that it may help others. That cognitive surplus has shaped and informed my whole 14-year cancer ‘journey’ (I hate that word), so that’s why I’m sharing this post publicly.
14 years ago, I started a blog, chronicling my research and subsequent treatment decisions. I was amazed to see how many people with prostate cancer would tell me that it helped their own decision-making. I will periodically update this new phase, so if you want to know how my story develops, just follow me here.
Some family and friends, however, need more regular updates, so I’ll also be keeping a ‘chemo diary’ (what fun!). If you are a prostate cancer patient or carer and would like to get a non-expert detailed personal account of the experience, get in touch and I’ll add you to the diary list. I promise that it’ll be a truthful account, without sugar-coating the reality. And it will help me work through some 50-year-old unfinished business.
Wish me luck.