9/18 online support


When I was first diagnosed I wanted to find an online support community. I was not keen on a face-to-face group and at that time there wasn’t one for Prostate Cancer anyway in the Doncaster area. I soon found the PCUK (Prostate Cancer charity) and its online group. I joined, asked a few questions, and also avidly read the many stories on there. It struck me from the outset as quite a knowledgeable group and a group that would challenge misleading information. I remember it in those days being occasionally feisty but usually these ‘debates’ were resolved amicably. You got to know many people by their alias and even years on sometimes these are the names that come to mind first. It became addictive and I found myself on most days, sometimes just lurking and listening.

I was surprised that there were at least as many women online as men, reflecting this reluctance amongst men to take responsibility for health issues, a consequence for treatment and recovery which remains an issue. But it also changed the nature of some of the discussions as they were led by the perception of women on their men and a picture of these men remained partial. So when an opportunity was offered to join an annual event when the group met up I decided to bite the bullet and go. This weekend I am attending my fifth such event having missed last year through illness.

Arriving at the hotel

Driving down to Leicester on the first time was quite a nerve wracking experience. What would we talk about, who would these men and women be when I met them, did I want to share to people whose image had been carved in facsimile rather than real -life. Although I did not realise it I had arrived metres from the venue when I took a wrong turn into a village of which the hotel address carried its name. After a long search I eventually asked someone (I know I could have asked sooner but who does that, rather be lost for an hour before the humiliation of asking directions) and I arrived late. The meeting had started. I nearly turned round and went home but steeling myself I walked in a room with about 80 people in it and spotted a couple of names from the discussions and a spare chair. Soon we were swopping stories of our various difficulties and where we were in treatment terms. There was a great lunch and then into the beer garden. I had spoken to those I had identified beforehand from the online community and was ready for home.

The community had come alive and I have met a few people on other occasions as well as this annual meet. It is a strange group as always dying and death is not far away. Indeed I have seen many men leave the group and this is sad though in a strange way helps you cope with death better. One guy I met early online, though I never saw him, we did build a great relationship because we shared an attitude to life and death which we discussed and shared constantly. He was someone who did not deny that death was coming and in a lovely piece on the community he told everyone that treatment was stopping at his request and he would spend the next few weeks, maybe months saying good bye to family and friends. A lot of the group reacted to this badly encouraging him to try other treatments rather than respecting his decision. He withdrew from the group as he did not have the strength or will to argue with them. I carried on these arguments and consider him one of the bravest of sufferers I have ever met. Our correspondence continued for a while but he gently passed away with his family within three months. It’s strange how you can miss someone you have never met.

Having been lucky enough to survive for over six years I have met quite a few different individuals and find myself through the common source of the disease warming to individuals I may not have met in real life. Generally staying away from the tricky topics of politics and religion we can bond over catheters, drugs, oncologists and mishaps can be discussed freely in ways that is harder with one’s normal group of friends. One or two have become friends who I see or talk to more frequently but for most I see them once a year and at the same time watch their progress on the community.

The community itself changes character from time to time. It has always had the reputation of being supportive and I think does welcome new members, who are anxious, frightened or confused, well. But as people change the focus and nature of the community changes. It probably has more discussions over curative treatments as there is still reluctance to really engage in the end-game. When a big character dies it does have an impact on everyone, even if you have not met them, the loss is palpable. I guess I am not as frequent a visitor as I was as I have found other support systems over the years but I always log updates on my treatments and stay in touch as best I can.

I have tried to keep coming to this annual event despite some reservations. It is now organised by the charity itself now and I suspect they will look to doing something different including looking at a more accessible hotel. But if I can drag myself up the stairs I will enjoy the lunch and enjoy the conversation. I will be home for the football tomorrow though.

My week in photos:

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