Supporting Men and Their Families
I remember well the utter devastation of being told firstly that I had cancer and then the indescribable feeling of being told that there was no cure.
You immediately go to a very dark place, the depths of despair, and have no idea who to turn to for help. The big mistake I guess many men and their families make is to turn to "Doctor Google" for advice and believe me this is something that should be avoided at all costs. It only takes you to a darker place.
I am living with cancer, not dying of it
I was very fortunate that here in the UK those diagnosed with cancer should be appointed a Clinical Nurse Specialist (CNS) to provide support but lack of resources means that this doesn’t always happen. I was one of the fortunate ones to have an excellent CNS who helped my wife and me hugely.
We are also lucky in the UK to have cancer support centers run by the likes of MacMillan, Maggie’s and others, and I was blessed to have a Maggie’s center in my city.
I will always remember the advice given to my wife and me by the center head on our first visit when she said “Please remember that you are living with cancer not dying of it.” That mantra has stuck with me ever since.
It's important to compare notes and support each other
Resources like ProstateCancer.net and, in the UK, Prostatecancer.co.uk play a vital role in supporting men with a wealth of well-thought information and guidance but, most importantly, to talk to other men going through the same via Forums and Community pages. The ability to compare notes is really important so long as it’s done in a very positive but realistic way.
In recent times I’ve helped several men from those newly diagnosed to those further down the journey who are having a tough time mentally.
I really do think that peer support is vitally important. I’ve had a telephone call from a man in tears who couldn’t cope anymore and I hope I helped with re-assurance and pointers to where he might seek help.
Turning our mountains into molehills
More recently I was contacted by the wife of a man who is a few years younger than me, newly diagnosed perhaps T3 but maybe T4. I’ve since had a long telecom and exchange of messages and was told that “their mountain felt like a molehill” after our chat. As we all know, it probably is still a mountain but if it helped him rationalize his thoughts and gave him just an inkling of positivity then it was definitely worth that 45 minute call.
Don't sugarcoat prostate cancer
What do you say in such a situation? I think it’s important not to sugarcoat the situation. A cancer diagnosis is incredibly serious, but it is important to give newly diagnosed men hope. Reassurance if they’ve been caught early that there is still a good chance of "curative" treatment and if caught later, that treatments are advancing at a great rate of knots and that any prognosis they’ve been given is almost certainly based on historical outcomes.
I also like to tell them about men who are doing really well whose treatment is keeping them stable for years but it's also important not to gloss over the fact that some men do less well.
Peer support is extremely valuable
I strongly believe that peer support is a really important process and would urge men newly diagnosed to reach out for help via ProstateCancer.net as there are plenty of us here who may be able to help and reassure them.
It’s also important to support men’s other half’s and their families. Explaining a diagnosis to children is really tough, especially younger children, but there are tools out there. Just ask and we can help guide you to the support you need.
Have you made personal connections through your journey with prostate cancer?