We want to say a massive thank you to Charles Elvin for this week's raw and honest Patient Story in which Charlie shares with us the impact that his cancer diagnosis has had on both himself and his family. We know this was a difficult blog for Charlie to write and it's a difficult blog to read, but we hope that it will help others begin to understand the true devastation that a cancer diagnosis can cause.
Chemical castration is not an easy subject to chat about. Removing nearly all your testosterone, prostate cancer’s favourite food, is one of the first things that happens to you when you get diagnosed. Quite literally, emasculating you. Add in the bloating from the steroids that come generously served with radiotherapy, the hair loss courtesy of the chemotherapy, and the bone-deep exhaustion all treatments create, then the transformation is almost complete. Throw in, a year down the line, the disabling of a leg from cancer-induced lymphedema, making crutches a necessity, then the new daddy is there in front of you. What was a sporty, fit, active, playful, hard-working 50 year old father of two boys now struggles, two and a half years later, to get upright fast enough to answer the door and takes over five minutes to climb stairs he used to leap two at a time. A stack of daily medicines, keeping the essential pain suppressing morphine company, sit on the breakfast table next to the milk and Weetabix.
Stripping away of parts of being father, a husband, and being male slashes a deep wound into the sense of identity and purpose. The Wife has lost parts of her husband, who loves her more than ever, but even the highest levels of sex drive evaporate when the testosterone goes, and pain becomes your new constant companion. The Boys have lost what their father was and had it replaced by a shadow, shorter tempered and less fun, who needs to cram a lifetime of love for them into the remaining months on offer. Losing the ability to be the one who fixes broken things, mows the lawn, gets footballs out of the trees, and mends the doors they have dented, takes away so many moments we could have together. It’s not that The Wife can’t do them as well as I can, she can, but I have lost doing them, and The Boys have lost doing them with me.
Suddenly, in a partnership of equals, I am not contributing. In a family where both parents worked in professional jobs, broadly equal in achievement, to suddenly be in the position of not working or earning feels like failure, of being a passenger. The reality, that work is an impossibility, doesn’t change the feelings of inadequacy. It gnaws away at a sense of purpose, that you are no longer doing what you are meant to do or want to do, no longer doing your share for the family. No amount of cooking, on-line food buying, or clothes ordering can replace it.
Bumps in the night downstairs and noises in the garden used to be my job. Since I am not only considerably larger than The Wife but also practiced traditional karate from a young age it was the right allocation of duties. Crutches now make getting down the stairs a comedy sketch, prevent any form of pursuit, and are a hopeless weapon for two-legged people let alone the monopodial. Bone fragility simply adds to the fact that any form of confrontation would be a disaster. A basic instinct to protect those you love becomes impossible and being so vulnerable is both hard to deal with and frightening. Like the memories of being younger, fitter, and better looking, the image you cling to of yourself is very different from new reality cancer forces you to live in.
The cliché that men don’t want to talk about things certainly applies to me when it comes to signing up for chat rooms, attending support groups, or seeking out counselling or therapy. There is no desire to find people with whom my main connection will be we are dying from the same disease. I get enough of cancer every day from living with it. Being around other people does help, but it is going out for drinks with friends, meeting up for coffee in the mornings, or having lunch with brothers and sisters, and their families, which gives a connection to what life used to be. Times that allow it to be forgotten and ignored, if only for an hour or two, are a more powerful therapy than any counselling or group discussion.
Emotions are released in other ways and at other times. The tears, hidden from The Boys as best I can, come too easily as small moments reinforce that I won’t see them grow up or find out who they will develop in to. Hugs and gentle crying happen in the middle of the night when The Wife and I find we are both awake at three in the morning thinking about the same things. We talk about my fear of the pain of dying, my misery of knowing I will be leaving her and The Boys, her misery at knowing she will lose me and the helplessness about a future she doesn’t want but can’t avoid. More than anything, it is always our worries about The Boys and how they will deal with my death that dominates.
Structure helps. It’s too easy to fritter a day away and, when you do, find it adds to the feeling of hopelessness and futility. Making sure an alarm goes off in the morning forces activity and engagement with the world, the noise of the children having to get to school helps drive the day forward. Setting a target of getting downstairs, after a shower and dressing without help, and having breakfast before 9.00 a.m. may not sound challenging but hitting that every day becomes a success and a focal point. Other deadlines also keep you human. Not just cooking but planning the week’s food ahead and researching new things for dinner gives a responsibility to rise to every day. Writing, for me, is an ambition I can pursue as other dreams vanished with the cancer, such as setting up my own business or shifting to a new career.
Is there a male experience of cancer? Whoever you are, cancer snatches away lumps of who you are, and thought you were, and never gives them back. For men, this includes parts of being male, being a husband, and being a father combined with everything those roles bring with them. The small changes, like being unable to bring your wife a cup of tea in bed, can have as big an impact on life as the large ones. Humour gets you through some days, on others you just want to go to bed. Men might talk about it less and in different ways, but the mental pain is as real as the physical and can be a lot harder to deal with.
Charles Elvin was diagnosed with aggressive advanced prostate cancer in January 2019, he was 52. Unable to continue working he now writes Half Life, a weekly newsletter/blog about living with terminal cancer and the impact on day-to-day life for him and his family. Blunt, humorous, and honest, the objective of the newsletter is to help show others the reality of living with cancer and how cancer has an impact not only on the sufferer but on all those they love and who love them. He has written one (as yet unpublished) novel during this time and plans to write several more before the cancer kills him.
If you or a loved one are going through a similar experience to Charlie, we have a range of products to help ease the awful side effects of cancer treatment in the CancerPal Marketplace as well as a range of Men's Care Boxes, full of products to help comfort and support.
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