Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

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Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive


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The Changing Face of Cancer Support by Chris Lewis

I would like to start this piece by thanking Marie and the OPAAL organisation for inviting me to write a guest blog. My own experience got me into cancer support, and I would like to explain how that happened, and a bit about what I do now.

In 2007 I was a self-employed business consultant, specialising in the ladies fashion business. I was flying around the world buying and selling, and generally enjoying myself. The landmark of fifty had been passed without any health issues at all, so I was looking forward to a few more years of work, then early retirement, to travel with my wife.

Unfortunately I got sick soon after those decisions and I was told I had a rare incurable blood cancer, (Mantle Cell Lymphoma) and it was stage 4. I had aggressive chemotherapy followed by a stem cell transplant in an attempt to give me more time. This has left my immune system compromised and I now suffer from a regular onslaught of infections and viruses, meaning I have required treatment constantly since.

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Chris Lewis

Realising I would never be able to return to work, as my health had now become unreliable, I decided I wanted to focus on a project. I had seen for myself the total lack of effective support for people after treatment and decided I would try to improve that. I was so shocked at how bad things were and I felt that too many people were just happy to accept that as reality for people after a cancer diagnosis.

I needed to understand better how the current system works, so did a lot of volunteering with local and national charities, and in between also spent a year on a course to learn more about cancer and its effects. This was a fabulous fit for me, because with my unreliable health I could volunteer when able, and it gave me the focus I craved.

After several years, people were noticing my work and I won some national awards and my profile in the cancer community was raised. I was doing a lot of public speaking but I knew that there were so many more people I couldn’t reach. My friends suggested that I take to the internet and write a blog, to help contact more people, and this I did. Very slowly things progressed and the audience grew, and today we are read in most countries around the world. Not only by people affected by cancer but also clinicians and people working for large health organisations.

Social media has helped me work with so many people I could never have imagined, and my reach is larger than I could ever have achieved without it. I still work ‘face to face’ with support groups regularly, but I am finding more people are enjoying the freedom of social media. On these platforms you are not constrained by time, weather, transport and health etc. You can also be anonymous if you choose. But I am also aware that there is still a part of our community that is not yet used to that method of communication.

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My work covers people affected by any cancer, as many of the issues we face are common with every disease. I also work with all ages and I am delighted that the popularity of my work is now increasing in the teenage and young adult area. I do my best to collaborate with existing organisations, as resources are scarce so no need for duplication. However there are currently many gaps in service and I do my best to fill some of those.

I was interested to see the work that Cancer, Older People & Advocacy does with peer support, and reading the criteria I realise that I fall under your umbrella myself! It is such an important aspect of my work, but of course there is only me, so couldn’t work in the way that you do. One of the biggest issues I have seen with cancer is that it makes people feel isolated, and I do my best to connect with as many people as I can to help with that issue.

My experience also shows me that there are many organisations out there doing fabulous things, but are not being found by the people that need them. Many of the larger ones seem loathe to signpost to services that are not associated to them. Therefore I do my best to share resources and encourage people to collaborate much more.

That is a brief idea about the work I do. Please feel free to visit my site where there is a lot more detailed information. You will be able to see videos etc explaining more, and you can read from the back catalogue of my own blogs.

Chris Lewis