Cancer 104

A very popular way of dealing with human problems is the support group, usually now the online support group. Before I retired I was slightly involved with these support groups, usually in relation to students’ small-scale research projects. I sometimes wondered about their value but never really thought it through. They are presumably very helpful for some people, in terms of practical advice, sympathy, and support.

Since my cancer diagnosis I have, several times, thought that I should somehow be involved with the various online support groups that are available for people with cancer and those who help them. I have tried registering. I have looked, but I don’t feel able to benefit from them.

I have looked at people’s comments and sometimes felt able to respond with advice, but I have not put a question to a support group that I want answered. I am not sure why. I don’t claim to have any great knowledge about cancer. I am not a medic, I am not a biologist, I am confused by some of the terminology though I do read some academic papers and health web pages about the disease. I understand the scientific method and can interpret findings. It makes sense to ask questions about things about which I have limited understanding, but I don’t ask questions on online support pages. It is not snobbery, a feeling of superiority or a better knowledge base, so what is it?

If I want to understand something of cancer I might ask a professional when I am in the hospital and as I said, read the academic articles and the recognised web pages. There are probably people in these groups who are knowledgeable, but how am I to know which ones? How am I to know which people I should take advice from?

The groups are probably more useful for asking for and providing social support for people with cancer, at least some people with cancer. I don’t feel I need it. I have a great support network with family and friends, most of whom spend most of the time taking the piss, but enough of the time being kind, generous and understanding, helping me when I need it, and being serious when I need it. I am lucky. I am not lonely or alone.

I am sure the support groups are very good for other people who perhaps don’t have this support, or are surrounded by people who don’t understand or can’t for whatever reason provide the support an individual needs, which brings up another question, that of the difficulty of providing support, which works both ways.

We often talk of how people find it difficult to talk to those who are seriously ill. They worry about saying the right thing, doing the right thing, being around, staying away, and so on. I suspect most people with cancer would prefer it if people just said whatever they wanted to say, turned up on the doorstep for a cup of tea when they felt like it, and commented on the person’s treatment, look, health, or illness, in whatever way they thought. If they get it wrong they will find out, but speaking as someone with cancer I would prefer somebody to just turn up and say ‘You look rough’ rather than not turn up. It is better when they say ‘You are looking well’, as long as they mean it. Don’t bullshit. If you find it too difficult to say something, don’t say it, but still turn up for that cup of tea.

On the other hand, it is also important for the person with cancer to say what they want, not to withdraw into a shell and wait to die. I know this is difficult, that we are all different, and that it is seemingly impossible for some people to open up because the diagnosis can be so devastating that they cannot cope. This is perhaps one of how online support groups can help some people, those who are happier online than with people (at least concerning their cancer).

It works two ways. The person with cancer wants people around them, but they have to show they want people around them. The supporter has to show that they can support, in whatever way is most appropriate for their relationship with the person with cancer. That might be talking, either about cancer or not, going for a walk, or just having that cup of tea.

Who am I to say what kind of support works for people. Social support is about perceived social support. Whatever works for the person works, whether that is lots of friends, a key friend, or the online community. My point here is just my opinion. For me online support groups have little meaning. For others, I am sure they are a valuable form of support.

Regular readers are well aware that this blog is my form of online support. Spit it out, feel better, and get on with life.