Living Life on a Knife Edge
The emotional toll and impact of a cancer diagnosis is huge but is so often not talked about, especially by us men who are pretty useless at talking about our feelings.
The fear of progression
It’s been brought home to me in recent days that, when you have a prostate cancer diagnosis, you really do lead life living on a knife-edge. Whether that be someone who has had curative treatment but lives in fear of recurrence or someone living with metastatic prostate cancer who lives in fear of progression.
This week alone two people that I know have seen progression. One whose cancer has now spread from lymph nodes to bones and another, who was diagnosed stage 4 in January 2011 and has remained stable ever since in the Prevail Trial that he joined in December 2011 taking Enzalutamide, only to find out in recent days that the treatment that has worked so well for him has failed after 9 years. Both of them will now start new phases of treatment to try to keep their cancer at bay and to live longer and do some of the things that they still want to do/see.
That’s the reality of the knife-edge we live on.
Cancer takes over the mind
When you are diagnosed like I was, de novo stage 4 and told that you may only have two years to live your world disintegrates and you fall apart. It’s impossible to think of anything other than cancer and dying.
Then you start thinking about the milestones that lie ahead. How many more birthdays, anniversaries, Christmas’s will I get to see? Will I make our Golden wedding anniversary? Will I see my Grandsons, who I dote on, become teenagers, young men, go to university? Will I get to walk my daughter down the aisle?
There are many dark days at the start although it gets easier with the passage of time. Now I dread the dark of night, lying awake, lonely with my head spinning with thoughts about what the future might hold.
Gradually the darkness is replaced with anger. First of all “Why me?” anger, it’s just not fair. Then anger that if I’d known the first thing about prostate cancer and PSA testing when I was 50 my cancer could have been caught earlier and I could have been cured.
Some men have to deal with a deep sense of depression. In my case, it was more about sadness, about mourning the old life, the old me pre-cancer. Mourning the man and the athlete that has gone and been replaced by a pale shadow of a being.
A diagnosis impacts every aspect of our lives and can lead to panic. When I’m gone how will my Wife cope mentally, financially, physically? Have I done enough to provide for her?
I made a massive mistake when I was diagnosed by telling my wife to leave me and go and find someone else who could look after her properly because I couldn’t anymore. That’s the ridiculous level of impact cancer has on our thought processes.
Feeling out of control
Then we have to deal with the anxiety of regular testing. Those that need regular scans call it scanxiety. In my case, it’s PSA blood tests every 12 weeks so I call it bloodsxiety. When you are living with stage 4 you know that, eventually, they are going to say to you “Sorry Tony but the treatment is starting to fail”. Exactly the discussions that Graham and Gary have just had and we know that it’s a certainty. The treatments can only keep those rogue and very clever cancer cells at bay for so long.
I live in fear and dread of that conversation. I don’t know how I’ll cope with it. The worst day of my life was when I heard those words “I’m sorry Tony but I’m fairly certain you’ve got prostate cancer”. Will the next conversation be worse, where will it lead. I feel out of control. There is little I can do to control my own destiny.
Living life to the fullest
Living on the knife-edge is horrendous but, you know, I’m still alive, I’m still doing okay, I’ve still got a chance of doing all those things I want to. So I cling to that and try to live life as fully and joyously as I can. At least when my time comes they’ll be able to say I enjoyed my final years.
My closing message is therefore to live life to the fullest now, whilst you can, whilst you are fit and well. Don’t wait until you have that conversation that I had in May 2017. It’s too late then!
What was the most difficult part of your diagnosis?