This week brought the news that PC had been recognized as a major cancer and will have 75 million pounds invested in it. Wonderful news of course. Not before time we could say.We are all grateful and hope this will mean a serious reduction in male deaths in the future. The money is going to research for a blood test that can detect this horrid disease faster and easier. For new MRI systems to be created and safer and more precise surgical treatments. It will also be used to make GP’s more aware and pro active, getting men to have these tests earlier and then straight into their chosen treatment. All good and all welcome.But. I have said before, that the fear of the outcomes of treatments, the side effects of treatment , in my opinion, stops many men coming forward for these tests. It isn’t the fear of surgery, the fear of radiation or even death. It is the fear of what happens after treatment. All of the money invested is going to research the physical side of PC. But what about the psychological effects of diagnosis, of prognosis and treatments? What about men’s fear of the side effects, that I hope will be less with newer treatments but maybe still present? I know that some men do nothing because they fear what might happen. That they will be ‘less of a man’ after treatment. We need to address these very real fears and make men feel safer and understood.
My heart aches, every time I read of a man, dreading the thought of being unable to have sex because of ED. Being incontinent because of the lack of nerve sparing. More so when these men are very young, want to have a family and a full physical life in the future. What is there out there for them? What kind of support for them? Yes we have the groups online and they are wonderful but maybe we need to offer them more.
All the money, all the research. All the investment is not going to remove the ‘F’ word. The fear of the side effects, from the minds of the sufferer or their loved ones. I had to tell a young man, a relative, that David had PC and asked him to get tested. He won’t. He is too afraid of having treatment and being unable to fulfil a full sexual life with his partner. He will ‘take his chance.’ If he had the test and he was found to have the disease, he might live a longer life but he would rather have his life without knowing and take the chance. I actually understand this. In the beginning, I didn’t want my husband to have a 2nd test, thought it would be better not to know and to ‘take a chance’ but thinking it through, we decided against that. It would always be there, that thought, that ‘what if’.
We need all the positive stories on here. We need all the survivors to tell others that they are living full lives. We need that kind of publicity. Lets be honest here, like in childbirth where a woman loses all her inhibitions all her dignity, the man with PC loses his dignity during the treatment, the catheter, the temporary incontinence but they are still here! Still living. The surprise to me was, that even though David is a pragmatic man, he is very private but we were able to laugh at things we would never have laughed at before PC. We still do. Humour can be a very good friend at times like that. Being ‘out on your own’ as some men on here seem to be, is not good. Some women have husbands and partners who won’t discuss what is happening. Turn away. Some even put their heads in the proverbial sand. But it won’t go away! This can leave the man or the partner isolated and alone in their fear. The support on here is amazing but maybe in a different supportive environment, maybe group support, would allow those affected by the fear, to see that others feel the same. That they are not alone. That the ‘fear’ is actually quite normal. It could be a place to vent and cry, to express their feelings with like-minded people. Fear can be crippling, I know, I have been there many times and would have loved somewhere to physically take myself ,to explore the reality of these fears. Or just to be emotionally held.
My reason for the above is this. Maybe some of the money invested could be used on training therapists to work with men or couples, who are facing this horrid disease, this cancer with a little ‘c’. It is different from other illnesses as I write in one of my blogs, I call it the couple’s cancer as it affects both ‘victim’ and partner in equal measures but in different ways. Therapists or health professionals, can teach patients that there is life after PC. Different maybe, but life all the same. If men are diagnosed early in the disease, part of what the research intends, if the treatment is offered soon after diagnosis, allowing of course, for the man to have time to come to terms with what is happening, if that could happen but then no waiting around, things might be a bit easier. The waiting is excruciating for some, me included.These trained health professionals could assure those affected, that they will survive, maybe not as they were but with a good quality of life all the same. As is often said, more men die with PC than die from it. But that is no reason not to treat it is it? Late diagnosis or refusal to have treatment, brings the worst outcome. Maybe not immediately but maybe sooner than anyone would want. I have read on my groups, men saying they would rather live a short full life as a ‘complete man’ than a longer one without normal sex. Well my husband had surgery, life is different, sex is different and I can assure you guys, there is nothing ‘incomplete’ with him. He is healthy, not incontinent, sexy and alive. Believe me.
Having said all of that, we need to be able to abolish men’s fear. Therapy can help cope with the fears, the anxiety that happens in cases of cancer. I work with anxiety, depression etc. and I know therapy helps people.We need to banish the ‘what ifs’ for those of you who read regularly, you will know how hard that has been for me. So I know what I am talking about. We need to concentrate on today, now. Acknowledge the fear of the side effects. Yes research will perfect treatments and so these will become fewer. But we should not make light of how frightening PC can be , in the early terrifying stage, of hearing the word cancer. Along the journey that is so full of ‘waiting’, that only feeds these fears. Whether it is a man affected or his partner or wife, acknowledge the ‘realness’ of it and understand, be compassionate. This is not ‘man flu’, this is Prostate cancer and it is scary. But if we had support, real places we could turn, people we could go and see and have health professionals guide us through and support us, life would be a little easier I am sure. This is where I think funding is necessary. Of course we need the research, the new techniques, the new blood tests but lets not forget our emotional and psychological needs in all of this.
Although the word ‘journey’ has become synonymous with the celebrity world, for me this has been a journey and I suppose, because of the changes in our life, that journey is ongoing. In two blogs I have written: ‘Take Care of Him. Take Care of Them etc’ and ‘A Different Kind of Love’, I have mentioned some of what I have written today, so sorry of I have repeated myself but I feel strongly that the psychological effects on both patient and ‘carer’, is often made light of. Our journey will continue. But we are still here. We chose surgery, although of course it was Davids choice, in the beginning I just wanted to unknow what we knew, unhear what had been told to us and move on. But of course we couldn’t. We discussed it at length, David with his strength, me holding onto my fear and trusting him. We made the decision to have the cancer removed and I believe by doing that, we chose to live. From that day, we have struggled, fought and cried together. Me? I screamed and shouted, mostly on here, but here we are. Alive and still writing. Still living and still loving. Everyday is a bonus. More spontaneous kisses and hugs. More glancing at each other with a little smile. More finding new strength in how far we have come. We love hard, We laugh a lot and share more. Living our life in our own way, to the limits.
How long will we last? Don’t know. None of us know that but I believe that choosing our path, surgery,cancer has been beaten and David will be here with me longer than if we had done nothing. Just my belief. Fearing the consequences of the huge decision, makes the wolf bigger than he is. So we got rid of him, he was an uninvited ‘guest’ and so he had to go. The side effects fade into insignificance when you think of the alternative. Death. Life without my rock would be no life.
So if you are reading this and don’t know what decision to make. Please choose Life. Life is precious. Yes maybe after treatment it will be different but it will be a life. It can still be good. Coming so close to death focused our minds and brought us to a new deeper love, all-consuming, wonderful. How could I ask for more. I want to continue to read stories of men, of couple’s who have had treatment and now enjoy a new different kind of life. Happy stories to encourage other men to travel this journey. But if they could do it with help, provided through this investment into PC by the way of therapists, or therapeutic groups, it would make life so much easier. My heart goes out to all of those who did not win this battle for whatever reason, I send my love. We cannot help those gone but we can try to help those following us on this road none of us asked to take. Good travelling companions help each other. That is what I am trying to do with my blog.
Thankyou for reading x
carolannwright 