Being diagnosed with Cancer and/or undergoing treatment can make you feel very isolated. It’s not unusual for close family and friends to refrain from talking about what’s happening – sometimes because they feel scared themselves or don’t know what to say – and sometimes because they’re afraid they might worry you, or it’s just too emotional.  Either way – the not talking can tend to make you feel isolated.

From my own experience I also know that one often doesn’t want to tell those nearest and dearest to you about the level of pain you are suffering, or about how you feel about certain treatments or medication. It is also difficult for those who have not had a similar experience to understand – to really know what it feels like to be diagnosed and know you have cancer.

Many patients turn to self help or general books about cancer - and there are some great ones on the market. They sometimes take the form of a medical explanation, or advise treatments and ways of handling treatment or medication side effects. For me, however, the most useful books are those written by patients with a personal experience of cancer. Somehow, reading how someone else actually copes, how they deal with everything, how they experience the same fears and apprehensions that maybe you have experienced, is enormously comforting; it makes you realise that you’re not going mad, that your reaction is normal!

By far the most useful aid to many cancer patients though, is a support group. A place where you can be your true self (admit you’re feeling down rather than putting on a brave face), admit you’re frightened, furious, upset about being bald from chemotherapy etc. Co-patients can understand and empathise – they know just how it feels in a way that others can’t – no matter how much they care. Support groups are extremely valuable to those that live alone – or just can’t talk to their family about everything.

These days there are a plethora of support groups for those with cancer. You can attend meetings – such groups meet up regularly. They can be informal – or maybe more structured, inviting guest speakers and members of the medical profession to talk to the patients. Another alternative is an on-line support group- these groups offer support via an on-line forum – where patients can talk to each other by posting on-line. This type of group is particularly useful for anyone living in an isolated place, or without transport, or unable to leave dependants unattended etc. It can also be convenient for disabled patients where travelling may be more problematic, or the deaf where visually seeing the screen is an easier way to communicate with those who do not speak sign language, or patients just too darn busy for any other type of group. These days many people blog about their cancer experiences too – and this is cathartic to them and offers insight to others – in addition readers can communicate via the blog comments, offering support. Some of the major cancer charities (eg Breast Cancer Care) have “chat” facilities – so users can share experiences and information on-line.

You should consider which type of group will most benefit you – you can try out the different types before you commit. I do advise that when you try one out you don’t make a snap decision though. When I first joined the Chondrosarcoma Support Group – I felt uncomfortable and my first instinct was to give up on it. However, I stepped outside my comfort zone and now I wouldn’t be without this group; many of the members are now friends (even though I’ve never actually met them). Over a period of time I was invited to become the UK co-moderator of this cancer support group – specifically geared for those with Chondrosarcoma – or their friends, relatives or carers. This particular group is invaluable to many. It is closed – that means you join and have a password so that the general public cannot access the posts. The group provides information and updates on research, treatment, medication, and of course offers support. It is run by the patients themselves in a layperson capacity, they are not formally trained. The members talk to each other via posts, sharing their experiences as they occur – and responding to each other. It is a wonderful way of sharing your own experience with others and benefitting from hearing about theirs at the same time. Members also recommend doctors and surgeons and inform others of what treatment is available and where it can be accessed.

If you do join a support group you should be aware that there can be a downside too. Inevitably there will be members who become terminally ill or die – and this can be very disheartening and upsetting. You can become very close to fellow sufferers (even on-line) and this can mean you experience a very real grief at their loss. This should be weighed up against the constant support you can give and receive and the invaluable information you will have access to. Most people can cope with the sad side – but can’t cope with the isolation if they don’t have support.

Today’s websites:

You can find details of a local cancer support group through:

Cancerbackup (telephone 0808 800 1234) website www.cancerbackup.org.uk 

Cancer Relief (telephone 0808 808 2020) website www.macmillan.org.uk

Online specific support group: Chondrosarcoma Support Group

Online survivors group: Adult Bone Cancer 

Today’s Top Tip:

Try out various groups before you commit as different styles will suit different people. You may be more comfortable meeting up for an informal coffee and chat with a support group,  or prefer structured meetings and guest speakers. Or you may find the convenience of an on-line group better for you. Don’t give up too soon though – it’s normal to want to run away at first.

Today’s Remembrance:

I dedicated my novel, A Curious State of Affairs by Jan Marshall ( UK  USA ) to two dear friends – Gilly and Rod. Today I would like to honour James Rodney Bullock, (Rod to me and most of his friends). Rod was a close and dear friend for many years. We were like brother and sister – and would confide the ups and downs of our lives, day to day, business and social, romantic and medical. I adored him. We were both diagnosed with cancer at the same time – I had Chondrosarcoma, Rod had Liver cancer. We shared so many parts of our life – and sadly, cancer was one of them. Despite a huge appetite for life and a desire to continue enjoying it to the full, after a valiant battle, bravely fought, Rod died. It broke my heart and I miss him still. Rod was a solicitor, family man and dear friend whom I will never forget. I still love and miss you Rod and hope we’ll meet again one day. Rod died 15th May 1996.

There is a moment in time that I can recall with absolute clarity – when I first really met Rod. It was on the day I had moved house in 1979 – it had been a difficult time as the move was due to my then husband and I seperating to get divorced. My dear friend Gilly was there to support me and help me move. I felt emotionally drained and physically wrecked. I was wearing scruffy black jeans and a black t-shirt that matched my sombre mood. I was not looking my best and was thin with worry. My solicitor Bob, was on holiday so he had arranged for his business partner Rod to turn up with the keys to my new property. I had only seen his partner in passing before, but had thought him rather handsome. From the second we met there was a connection between us – a connection that never disappeared in a couple of decades of closeness. Gilly spotted the connection too and predicted it was a most important beginning. She was right. She of course died of cancer in 1992 so never knew Rod’s eventual fate, or mine come to that. All three of us got cancer – I am the only survivor. It doesn’t seem fair. I doesn’t seem right. I miss them both. Cancer is a bastard. I want them back – my life was so much richer with them both in it.

Sometimes, even now, I have wonderful  eidetic dreams, where I am with Rod – we are chatting in our old familiar way. Maybe teasing each other a bit and laughing together. I always wake feeling joyful, and for a for a second or two feel good with the world – and then, like a new bereavement it hits me like a sledgehammer – he is gone. And the world is a lonelier place now.

“To live in the hearts of those you love is not to die”.