Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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“Knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless..”

Today we hear from Alan (not his real name) who has been receiving peer advocacy support from delivery partner Age Connects Cardiff & the Vale

I am a 76 year old gentleman who has recently started receiving support from the Cancer Older People and Advocacy project. To say I was in a bit of a state is an understatement.  Sadly my wife passed away in December from a brain tumour, to which we knew nothing about.  My wife and I were also carers for our grandson who had learning difficulties and he also had cancer, sadly he too passed away very suddenly in March.  My life has in a matter of months, been turned upside down and ripped apart.  I have limited family that live close by, so I’ve been struggling with how to cope and deal with the day to day issues of life.  I am also awaiting an operation myself for a knee and hip replacement and am in a great deal of pain.

HANDSMy Social Worker was the one who learnt about the Cancer, Advocacy and Older People’s Project and suggested we ask for some support.  I was reluctant at first as it meant explaining my pain to someone all over again, but I knew I really needed help and my Social Worker, however lovely she was, had very limited time.  I met a really nice gentleman from the Cancer Older People and Advocacy team who was a volunteer.  He was able to assist me with the mountain of paperwork I had accumulated, as this was really getting on top of me and the debt letters were beginning to come in.  He also assisted me with the practical things such as where and who I could donate my wife and grandson’s belongings.  He was someone to chat to also, someone independent who didn’t judge, he just listened and understood my pain. 

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He also accompanied me to hospital appointments about my own health which was hugely supportive.  After being a carer for so many years, all of a sudden being alone is a huge shock and adjustment. 

I continue to receive support as I still have a mountainous pile of paperwork, again! But knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless.

If you know someone who might benefit from peer advocacy support why not check out if we’re delivering services in your area by clicking here. Do get in touch.

Angela Jones, Age Connects Cardiff & the Vale


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Gay and ageing – breastfallen

Today we’re delighted to reproduce a personal blog post by Roger Newman, a great friend and supporter of OPAAL. It was first published yesterday on Roger’s own blog site:

CHAPTER 1

You know how it is when you’re sitting in the beautifully warm sunshine of an Atlantic island, and at the end of December too! Your mind plays its usual tricks and your past, present and future all move around your brain inconsequentionally.  People, seemingly long forgotten, suddenly appear; events nag their way into the memory producing a cocktail of smiles, feelings of sadness and guilt; and coupled with it all is that priceless feeling of well being . The sun’s rays do their trick and you feel so relaxed as you smooth your body blending together its mixture of sun tan oil and sweat. It has been like that for 10 years now and I happily tell myself that I am lucky, so, so lucky to be here on the island, and may it always be so.

This afternoon as I  rub my chest and gently tweek my nipples, on my right side I feel something unusual. Just a small piece of a flower blown off a shrub by the wind, no doubt. I  close my eyes and continue with the serendipity. A minute goes by and I brush myself but feel it again. It is different, and this time, there is no doubt – it is real. There it is, beneath my right nipple, something distinct, hard and not moving.

I remembered the same feeling on a November day some 18 years before. I had been listening to a radio programme broadcast during breast cancer awareness week. ‘Men get it too’ the announcer said. I felt myself then, and sure enough, there it was, a small lump. Panic! Total fear! But actually, after diagnosis, all was well. It was a fatty lump and was removed, and I never heard about it again afterwards. This time, however, there was something different about it.

CHAPTER 2

On return home a visit to a consultant was arranged. He examined me and told me that he felt it could simply be the residue of my body’s reaction to some medication I was taking, but it was best to do some tests.

From now on my experience of diagnosis took me into a new world, and I had to get used to the fact that it was a  world which was not a man’s world. As a gay man I had not previously felt what might be called a typical heterosexual gender divide, it had not previously been an issue but now, to my surprise, it did. Even the language I used about my body took on  what I would have called a feminine aspect. What I had called my ‘chest’ now was called my ‘breast’. In the body imaging department I felt curiously out of place as I waited for my mammogram. The nurse taking the image clearly wasn’t experienced enough to cope either and she had difficulty suitably arranging a man’s body, whose nipples may have been slightly out of the ordinary, but whose breast hardly fitted a machine which was normally used to photographing something much more pendulous and flexible.

The resulting mammogram was insufficient and an ultra sound was called for, but that didn’t show much either, and a biopsy was next on the list. So with just a few bodily bits missing I prepared for another visit to the consultant. There we sat, my partner and me, two men, in a waiting room of women – a brave new world.

In he came, accompanied by a nurse. Smiles and handshakes. None of this, ‘how are you?’ business, which later I came to react to from others, quite a bit. Instead we went straight into it. ‘I thought you had the consequence of medication you were taking, but the biopsy has told me differently and I’m sorry to tell you that its breast cancer.’

‘What????’ ‘For **** sake! I, me, doesn’t get potentially terminal illnesses! I’m here on this earth to be by the side of those who have things like that. I’m the buddy of the man with AIDS. I’m the friend who stands with the carers of those with dementia. I’m the one who conducts the funerals of those who didn’t make it. BUT I am not the one who gets the finger!!!! Hasn’t god ordained it to be like that?

Worse news was to come. A mastectomy would be necessary. Perhaps further surgery to remove lymph glands. Then perhaps radiotherapy, chemotherapy and god knows what else. Partner and I look at each other, unable to mouth what we are feeling, but at least we are together in our grim silence.

Nigel and Roger

Nigel and Roger

CHAPTER 3

How on earth do single people; those without partners; those alone. How do they deal with that news? How do you focus, and even move forward following such news. It’s good having someone else there with you, better than nothing, but there comes a point when you are left alone, alone to cope with such challenging news. Your friend has their own home, their own life to lead; they cant stay with you for ever. How do you deal with the solitude after they have left, when the sympathetic phone calls haven’t helped, when you wake in the middle of the night and the horrors about your future hit you.

I immediately thought of my friend David who had lived with liver cancer for well over a year. He had not lacked visitors or phone calls, but who as I now realised, nevertheless, had much more time alone to cope with his condition after his visitors had gone.

Look, folks! There is an LGBT issue here. We are many – more of us in the 45+ bracket than in the 15 – 44 bracket. We are more than likely to be living alone. Perhaps a third of us will experience cancer. Many of us will die from it. Where are the mentors, the advocates, the befrienders, the social workers and nurses, who understand our distinctiveness, even our uniqueness, and can be there by our side to see us through. In the night watches, when I awoke and considered my position, I gave thanks that I had someone I could say ‘cuddle me’ to, and I thought of those others within our LGBT community who have to face all this alone because we have not mobilised our forces/resources to serve their needs.

CHAPTER 4

I’ve always been different and so not surprisingly my cancer would have to be different too; wouldn’t it! There are only about 300 men per year who get it and I expected that this would mean being left without support, but, hooray, I was wrong. Our first meeting with the breast cancer nurse was accompanied by a superb and informative booklet on breast cancer for men and I soon gladly came to realised that I was not being treated as an honorary woman, with a women’s condition, but as a man who just happened to be amongst a very small but increasing number of other men who are succumbing to the same condition as thousands of women.

That is not to say that there are not psychological issues which may be peculiar to men . I was told that some men have real problems coping with the sheer fact of their different cancer. Perhaps even some might wish they had prostate cancer rather than breast cancer; they at least would have a ‘man’s cancer’. I noticed even within myself that when I told people I left a short gap between the ‘I have’ and the ‘breast cancer’ part of my speech. Perhaps even I felt something not quite right about having it. I was shocked after surgery by how unwilling I was to look at my new self in the mirror, and, when I eventually did it, how upset I was by the sight.

I meet people who still do not know that men can get it too, and I suspect that some might even feel that I had done something wrong, like smoking, to get it. I would love to meet other men in the same situation, but so far, I have found none. Perhaps the enormity of their burden has led them to go to ground. I wonder then if there are any other gay men with the same condition and wonder if I could even be only one in this country.

CONCLUSION

And so it has gone on. The surgery is complete and we (thank god its a ‘we’) have decided on the treatment which is best for us in our situation. From now on, every day will be a bonus day but these days will not be like the other days before the diagnosis. I’m still discovering how you think positively about the future most of the time; how you make a continuously proactive response to living ; AND how you confidently take your place within the male gay community with only one nipple!!!!!!! All things are possible, eh?

Roger Newman


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“I wanted to be more than “Nanny” in my retirement”

In today’s post Sherry, a peer volunteer advocate with Sandwell Advocacy’s Sandwell Cancer Older People Advocacy (SCOPA) project, tells us her volunteering story:

My name is Sherry and I have been a volunteer at Sandwell Advocacy since March 2015.  I was a staff nurse for over 45 years and when I retired in 2014 I was adamant I was going to do something productive with my time.  I have grandchildren who I adore but having had a very demanding career I wanted to be more than “Nanny” in my retirement.  I trained in Chester then worked in plastic surgery, something I thoroughly enjoyed. My final working years were spent as an ophthalmic nurse in Sandwell. Shortly before I retired I was diagnosed with breast cancer, this was a shock to me as I had always attended screening and knew exactly what to look for.  I received radiotherapy and chemotherapy and continued to work throughout. I am still under surveillance and attend yearly mammograms but “Once a nurse, always a nurse” I continue to stay busy.

I met Paddy and Juanita at a Cancer wellbeing fayre hosted by the Sandwell and West Birmingham Hospitals and they told me about the exciting new project they were working on, supporting people over the age of fifty who are affected by cancer – a perfect opportunity for me to put my skills and experience to good use.  I took part in the training and was soon partnered with a woman who had agreed to advocacy as she had some housing issues. My own experience helped me enormously as I had a good idea of what my partner was going through emotionally and I soon developed an extensive knowledge of housing policy.  Although the partnership has ended I feel I have made a very positive contribution to my partner’s journey and she knows she can come back to SCOPA if she feels she needs our help again.  With the knowledge I gained I was recently able to support one of my elderly neighbours who needed to move out of his flat whilst major work was being carried out. I wouldn’t have known about such things prior to becoming an advocate. I have also been instrumental in getting a gas supply to the flats where I live in order that I (and other tenants) can manage our heating more suitably. Overnight storage heaters are not the best if you need to adjust the temperature frequently as a result of medication. They do say you learn something new every day.

Sherry

Sherry

Throughout my career I had experience of advocates and their role but it has been challenging and very rewarding to be on the other side of the relationship.  My knowledge of the NHS and hospital policies has helped me no end and I have enjoyed visiting hospitals with my partner who was not confident in this environment.  I was able to ask a lot of questions on her behalf to ensure she was fully able to make informed choices.

I now have a new partnership with a husband and wife, they also have housing issues although totally different.  I have enjoyed running around for them and making phone calls to assist them in downsizing to a more manageable property. They appreciate my matter of fact approach and particularly the fact that I have time, something they haven’t always got.

I haven’t limited my volunteering to advocacy practice, I have joined the Local Cancer Champion Board as I feel I have professional experience which will benefit the project. I have also ventured down to Vauxhall in London with Juanita, the volunteer coordinator, to attend a National Champions Board meeting at Macmillan HQ – that was a long and tiring day but I thoroughly enjoyed the opportunity to meet with other champions and staff on the programme.  I have taken part in the national evaluation of the Cancer, Older People and Advocacy Programme  by BRAP and was also involved in Working Together for Change led by Helen Sanderson Associates which again drew on other aspects of my experience.

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I would recommend volunteering to anyone like me who wants to give something back.  Additionally for any retired professionals who want to do something similar to what they have done as a career, this is an ideal opportunity to be part of a valued and respected team.  If anyone out there is thinking about becoming a peer advocate I would recommend you talk to someone who is volunteering and find out first-hand what it’s like, I think you will get a positive response.

Sherry, Sandwell Cancer Older People & Advocacy


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How I (Try to) Avoid Advocacy Burnout

One of the many benefits of working with health professionals, in this case Dr Charles Campion-Smith who sits on our National Health Professionals Board, is that they often so freely share valuable information. Charles has introduced me to a smart phone (iphone and Android) app that may well be useful to advocates and patients.

The Cancer.net app is from the US but parts are very relevant to UK.

In particular the ‘Questions’ tab takes you to a page where someone can write questions (or select a number of provided ones) they want to ask – typically in a consultation.

The app then allows the anwsers to be recorded on the phone.

Audio taping consultations has been used successfully for some time but this is much less cumbersome and preparing questions together might be useful to advocate and patient.

I explored this app and came across a very interesting article written by Anita Mitchell which I know will be of great interest to our own advocates. I have now secured the relevant permissions to reprint this article in full and would like to thank Anita and the American Society of Clinical Oncology for allowing us to share this article.

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Anita Mitchell was diagnosed with stage IV colon cancer in 2005. She is the cofounder of the Colon Cancer Stars of Washington State.

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My advocacy story
I had not planned to become a colon cancer advocate. It is something that I just became. I suppose after everything that happened to me, I had to find meaning and purpose in my diagnosis.
I fell into advocacy in 2005, when I was diagnosed with stage IV colon cancer after just turning 41. The fact that my primary care doctor disregarded my symptoms and missed my diagnosis fueled my passion to become an advocate for prevention and a voice for those diagnosed at a young age. I was the third parent at my children’s school to be diagnosed before turning 50, which is the recommended screening age for colon cancer. So, I began educating families about screening and the symptoms of colon cancer. One of the first ways I did this was by starting an awareness day at my children’s school—I called it Dress in Blue Day. Years later, it became a national event!
I wanted to spread the word. After I learned how preventable my case was, I didn’t want this to happen to anyone else! But there were other things going on in my life as well. I was fighting for my life, trying to raise my 3 kids, and dealing with a crumbling marriage. It was a lot to balance.
Still, I started getting involved with some local cancer survivor programs. Then I began volunteering for LIVESTRONG, American Cancer Society, Colon Cancer Alliance, Fight Colorectal Cancer, and Gilda’s Club. Soon after, I found myself on committees for my hospital and state. I even posed for the Colondar for the Colon Club!Eventually, I started my own nonprofit, Colon Cancer Stars of Washington State, with the help of my Washington State Colon Cancer Task Force.
Advocacy is needed to give patients and survivors a voice when cancer becomes faceless. I clearly remember sitting at the ASCO Annual Meeting one year as a patient advocate. I was still on chemo, listening to the doctors talk about how a drug gives you maybe 1 extra month of life, wondering if the cost was worth it. I wanted to jump up and scream, “Of course it is!”
In the end, I got very lucky and was out of treatment after only 2 years. Even though I survived, I still lived from scan to scan and needed to find meaning in my life apart from my familly.
Handling advocacy burnout

When you are an advocate, you are smacked in the face with limited time and tons of things you want to do and achieve. You have to quickly learn to prioritize what is important. If you don’t, you can get burned out on advocacy.Here are some of the strategies I use to try to keep burnout away.

• Learning to say no. I quickly learned I would have to become comfortable saying no to different requests. This was not always an easy thing for me to do. I realized that I had to believe what I did was worth my energy and my time.
• Keeping balance. This is very hard for me, so I like to think of my life as a pie, and cancer is a slice of it. Sometimes I have a few slices, but if it becomes too many, I know I need to take a break. Cancer affects the whole family, so I had to be mindful that sometimes my children did not want to hear about colon cancer advocacy. For them, it was enough that they had almost lost their mother to it!
• Find support. I have learned to reach out for support from close friends who are cancer advocates. They understand the sadness and frustration of losing people to the disease because of the slow pace of science, politics, or lack of funding.
• Step away when you need it. Like they say during the airplane safety messages, “Put the oxygen mask on yourself first before helping others.” I have found this to be the case in cancer advocacy, especially when it comes to online help. These groups can be overwhelming at times, and sometimes you need to turn off the computer for a while. So when I need to, I step away for a bit and I do not let myself feel guilty about it.
• Seek what is meaningful and joyful in your advocacy. I try to slow down and analyze what brings me joy and a sense of meaning. I look for signs that I am going in the right direction. Sometimes it is a simple note saying, “Thank you, I got screened after I read your story in the paper” or “I slept all through the night for the first time since my diagnosis after I talked to you.” I once had someone say she kept my story in her pocket. You never really know how many people your story will touch or even save, but it is many more than you will ever know. So I choose to carry on!

Anita Mitchell Voices on Cancer


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‘Just be with them in the unknown’

Kathleen Gillett from Cancer, Older People and Advocacy programme partner Dorset Macmillan Advocacy considers the relationship between the older person affected by cancer and their peer advocate:

Steven W. Thrasher writes from the heart in his opinion piece in the Guardian ‘Don’t tell cancer patients what they could be doing to cure themselves’.

He analyses why we have a natural tendency to try to give advice or at the very least to try to ‘say the right thing’ in difficult situations. Then he explains why we should not.

‘Talking at someone with cancer about what they should do, rather than being with them in a morass with no easy answers, is not you helping them’ argues Thrasher.

The relationship of a peer volunteer advocate with the person they are supporting (their ‘advocacy partner’) is not the same as the relationship between relatives or friends.   Relatives and friends may be asked for and may offer their opinions.  Advocates do not offer opinions or advice but they can listen and be present.   They can, as Thrasher writes, ‘Just be with them in the unknown’.

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In Dorset we have been fortunate to attract highly motivated volunteers.  We find during our informal interview that most of them have a fair idea what advocacy is about even if they were unfamiliar with the term itself.  During our induction training we see them gain a much deeper understanding while taking part in the discussions about the ethos of advocacy and examples of advocacy in practice.

To volunteer to be with someone ‘in the unknown’ is not an easy thing to do and it is the volunteers’ ability to empathise that gives them the determination to fulfil this difficult role.  ‘Would you like to make a difference?’ is a familiar term on volunteer recruitment material.  ‘Would you like to be with someone in ‘a morass with no easy answers’?’ is a phrase we would be unlikely to use on our recruitment posters but our volunteers are undoubtedly up to the challenge.

Kathleen Gillett, Dorset Macmillan Advocacy


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How our steering group helps us to network and build partnerships

Our Local Cancer Champions Board, the steering group for Dorset Macmillan Advocacy, changed its name in 2014 to Cancer in Older People Development Group.  Members wanted to create a group that could, in addition to overseeing our service at strategic level, bring together people interested in improving patient experience for people over 50 affected by cancer and their carers. They felt that the new name was more self explanatory and we are fortunate to have an interesting mix of people on the group.

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As Dorset Macmillan Advocacy is delivered by two organisations in partnership the steering group sought to meet alternately on different sides of the county.  Meetings have been hosted since 2014 by Lewis Manning Hospice in Poole and since last year by Joseph Weld Hospice in Dorchester.  We have benefited from learning about the hospices and our presence there has raised our profile with their staff and visitors.

We also invite local guests to the group meetings such as the project lead for the Macmillan Information Scoping Project which took place last year and the director of Dorset Living Well Active, a physical activity project which is a partnership between Macmillan and Sport England.  The group can explore joint working at both strategic and operational level and this really enhances the daily  networking that staff and volunteer advocates do.

The new Chief Executive of Weldmar Hospice Care Trust, Caroline Hamblett, joined our last meeting in May and described the variety of community services that the hospice provides. Senior Sister Sally-Anne Baverstock then gave the group a tour of the facilities which include 14 in-patient beds all with views over the beautiful garden and countryside beyond.  We’ll arrange a visit for our team of volunteer advocates in the near future.

Steering group visit Joseph Weld Hospice

Pictured left to right are Sally-Anne, Paul Hickman, Chair of Trustees at Help and Care, Emily Brown, Senior Volunteer Coordinator at Dorset Advocacy, Jenny Rimmer, Macmillan Senior Advocate at Dorset Advocacy, Bob Smith, volunteer advocate.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 


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Today we hear from Emily Brown, Interim volunteer manager and independent advocate at Dorset Macmillan Advocacy:

I am new to Dorset Macmillan Advocacy service, not to Dorset Advocacy, but I am a newby on this project.  I have been blown away by the dedication given to it by staff at Help and Care and Dorset Advocacy, the members of our Cancer in Older People Development Group and of course by all of those volunteers who give their precious time and share and draw from their own experiences in order to support those that need it.  I have come at an exciting and challenging time as we strive to illustrate the benefits, positive outcomes and impact of the service on the people we support…we know the impacts because advocates see this first hand, but how do we convey its importance to others when times are tough, and how do we show that advocacy can also be a benefit to the NHS?

Jenny Purcell and Karen Piggott of Dorset Advocacy were invited to speak at the Clinical Commissioning Group’s (CCG) lung cancer pathways information day last month.  They presented to a number of professionals on the benefits and impact of advocacy.  We often talk about the benefits of advocacy for the individual which is, without doubt, the most important thing but what is not always considered are the benefits of advocacy for the service providers.

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We have recently received an independent evaluation of our service which illustrates exactly this.  Essentially what the evaluation does is highlight how the introduction of advocacy support can help to ensure that the choices that the person makes are well informed, that the individual has a consistent person throughout their journey, and that as a result the input of advocacy can help the process to move more swiftly, advocates can ensure that people can keep to their appointments and that the individual’s other concerns are being addressed allowing them to focus on decisions about treatment. 

In fact there was a recent example with one of our cases when a health professional at Dorset County Hospital postponed an appointment by a few days in order for an advocate to be able to meet their partner and attend this appointment with the patient.  This action alone indicates to me that this health professional recognised the value in having an advocate present to support at the appointment.

Our work continues with the CCG in Dorset to initiate the introduction of advocacy as a recognised standard of good practice on the lung cancer pathway. We are not there yet but the evaluation along with our Case for Support will, we hope, enable us to convey the impact of advocacy and put together a pilot scheme that can illustrate the values of the service for the service providers as well as those who receive it.

Emily Brown, Dorset Macmillan Advocacy

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