Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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The diagnosis of cancer was incredibly difficult for him to come to terms with

This year’s Volunteers Week is 1st to 12th June and we’re recalling stories from some of our amazing peer volunteers. In today’s story dating from 2014 we hear from Bob, a volunteer peer advocate with Dorset Macmillan Advocacy. Bob supported Brian who was diagnosed with Myeloma:

Brian is very intelligent, friendly and outgoing with a great sense of humour. He can no longer drive and is in constant pain of varying levels and physically weak. He can only walk a matter of yards with the aid of a walking stick or frame.

He lives alone in a small communal block of flats and when I first met him had extremely low self-esteem. Although previously very well-travelled and active he felt that he had few future prospects of a happy life. He found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.

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The diagnosis of cancer was incredibly difficult for him to come to terms with. Even though in remission when I met him, it was still hard to bear. He still has a few good friends but is no longer independent so cannot socialise as much as he would like. He spends most of his time in his flat watching TV.

Brian’s cancer is now inactive and in remission for 2 years. He has regular appointments with his consultant and GP, both of whom he has a great deal of respect for. He speaks very highly of his current medical professionals. A variety of pain relief drugs have been tried and the latest drugs give relief for 12 hours each day as a maximum dose.

He sometimes becomes confused and forgetful. He has sometimes taken the wrong drugs or has forgotten to take them leading to potentially very serious problems. These have included passing out and hallucinations. I was present at one of these events. I’ve spoken to his nurses, doctors and consultants for his safety when he has taken incorrect medication.

Brian always speaks openly and honestly to me and we have a very good relationship. He knows that I understand him, will help him where ever I can and that I will never impose my views on him. We explore options to overcome problems or achieve things he wants to do. He loves to have a laugh and a joke too and not always to be reminded of the negative side of his situation.

I’ve arranged a bus pass, trials of motorised scooters, membership of the Myeloma Support Group and taken him to a meeting to introduce him. Whatever information Brian needs I source and provide it. Brian is able to speak up for himself. He did have an issue regarding his pain relief when in hospital. He decided not to take this further although I explained what the process would be to make a formal complaint.

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Bob

Brian’s image of himself is now far more positive. He smiles more and we laugh and joke more than he used to. He has started to socialise more and is keener to “improve his lot” and not just accept his current situation. We have made a “bucket list” for 2014. I will help him achieve the things he wants to on it and help him make a list for 2015 too.

Brian is much happier to use aids such as motor scooters and walking aids than he used to be. He used to say that “only old people use those” (I have convinced him otherwise). Brian says he looks forward to our visits and really values them. He didn’t regularly contact his friends but now has an item on his bucket list to do this fortnightly. Several items on his bucket list show a massive improvement in his outlook. He will question his pain relief regimen himself now to gain improvements and changes.

When I met him at first he said “I am no longer any use to anyone. I will never have another relationship with a woman.” Now he says he looks forward to me visiting and having talks with me and he feels more positive about himself and he’s happy with his “2014 bucket list”.

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Bob’s view and Brian’s story can be found in full in our publication Every Step of the Way which can be accessed here

 

 

Marie McWilliams, OPAAL

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Depression and cancer

It’s all over the news today that there’s insufficient support for people with cancer who suffer from depression.

A total of 3 articles have been released today by The Lancet, The Lancet Oncology and The Lancet Psychiatry. The articles don’t make easy reading for anyone wishing to ensure adequate support for those affected by cancer. They describe a real issue of  major depression going untreated in people with cancer.

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The authors screened over 20,000 patients and estimated the prevalence of major depression amongst oncology outpatients. Worryingly the majority of people identified with depression were not receiving any form of treatment associated with that depression. In 2 different trials the authors compare those with depression and no treatment to those who do receive treatment. The results indicate much better outcomes where treatment is provided. These include reduced depression and anxiety but also lower levels of pain and fatigue, and better functioning and quality of life.

If you’ve read our publication Every Step of the Way you’ll remember stories such as those of Brian whose Peer Advocate Bob described how Brian: ” found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.” 

In another story Ron tells us: “I felt a great sense of confusion, apprehension and got very depressed very quickly. I couldn’t
bring myself to look at the leaflets that I was given because the whole idea of having cancer was terrifying and I had this idea that if I didn’t look at them, it may go away.

The advocacy support provided to both Brian and Ron made a real difference to them. With awareness of depression in cancer patients now raised by the Lancet articles we hope additional support mechanisms will become available to a wider range of cancer patients.

The articles in the Lancet, The Lancet Oncology and The Lancet Psychiatry can be accessed here

 

Marie McWilliams, National Development Officer, OPAAL