Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Susan tells J’s story

I am a volunteer advocate from Oxfordshire Advocacy and a Cancer, Older People and Advocacy volunteer.

I first met J at the Churchill Hospital in Oxford prior to her first consultation with the surgeon following a diagnosis of cancer of the uterus (womb). J was a delightful 83-year-old lady, tall, elegant wearing red lipstick and bright red nail varnish on her fingers and toes, and she reminded me of an elderly Meryl Streep. J was a widow, had no immediate family and her next-of-kin was a disabled sister in Birmingham, she did have some very supportive young friends who had young children but who were unable to attend consultations during the day.

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The first time we met was at the entrance to the hospital and we went to the gynae outpatients department where a very attractive male doctor (J’s words not mine) told her that the plan was for a hysterectomy within the next few weeks. A Specialist Nurse was in attendance and gave J information about endometrial cancer and treatment. J was not surprised about the plan for  surgery, but was determined that she was not going to have chemotherapy as a friend of hers had died following chemotherapy for liver cancer, although she was willing to have radiotherapy. My role at that consultation was to support J in getting across to the medical team that she did not wish to have chemotherapy.

After each hospital visit we went for a drink at the hospital café, which gave J an opportunity to talk about the consultation and any concerns she had.

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On one occasion we visited the Maggie’s centre where we spoke to the volunteer staff and received information about Attendance Allowance from the Benefits Advisor.

I visited J at home several times to go through the information that she had been given regarding surgery and treatment options and to help her complete the benefit forms. I supported J at her preoperative assessment and at her consultation after her keyhole hysterectomy. I supported J in discussing her wishes at her appointment with the oncologist.  By the second visit to the oncologist the results of the CT scan were known which indicated that there had been further spread, and the plan was for four sessions of palliative radiotherapy. The specialist nurse spoke to J about the support available from the local hospice.  However J was very upset as she felt that hospice intervention meant that she was dying. She continued to deteriorate and she asked me to attend for moral support when the specialist nurse from the hospice visited her at home.  This meeting went very well and the specialist nurse was able to give J advice on diet and pain management.

I went with J for her first two radiotherapy sessions.  She telephoned me at the weekend after the first radiotherapy session, extremely distressed and weak saying that she was unable to eat or drink or walk. I visited her at home 40 miles away and supported her to get something to eat and drink and encourage her to take her analgesia.

J never did have any more radiotherapy. I went away and on my return I contacted her and she sounded very frail .  I went to visit the following day but when I arrived a neighbour informed me that J had fallen that morning and had been taken into the local A&E department. I visited her there where she was in a lot of pain, frail but cheerful and glad to see me. However over the next week or so her condition deteriorated and I visited her in one of the inpatient wards at the local hospital (she was too unwell to be transferred to the hospice). Unfortunately J had had a stroke and was unresponsive, she looked very comfortable lying in bed with radio 3 playing in the background (J was a lover of classical music and a pianist) and I was still reminded of Meryl Streep. She sadly died the following day.

Susan

Susan

I was so glad to have met J as part of the Cancer Older People and Advocacy project and to be able to help her through her cancer experience. As she had no friends and family nearby I was able to offer her support, and help her navigate her way through the system and help her ask those often difficult questions and understand the response. I was a shoulder to cry on, someone to give her a hug when she needed it, an arm to guide her through the hospital corridors and in the end someone to push her in a wheelchair to her last radiotherapy appointment. My involvement with J was a real privilege and J was extremely complimentary about the assistance the Cancer Older People and Advocacy project had offered her.

Susan Mackie, Volunteer Advocate, Oxfordshire Advocacy

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Pat Wallis – My Cancer Journey and How It Led Me to Volunteer For SPAC

I was diagnosed with breast cancer 9 years ago and underwent lumpectomy, chemotherapy and radiotherapy.

I cannot fault the treatment I received from Southport Hospital, in association with Clatterbridge. The breast cancer specialist nurses were wonderful and very supportive and informative. However the health professionals can only give you so much help, you need the support off others to help you cope.

Entering the world of cancer and going through the treatment pathway you experience a roller coaster ride of emotions. Initially there is the shock of diagnosis, with questions such as how advanced is it? Has it spread? These questions can take time to answer as there are tests to undergo. It is hard to explain to someone how stressful it is waiting for the results and to find out what treatment you will receive. You certainly need the help of someone to go through this with you. At appointments you may hear what is said but not take it in and thus having someone else there, when you see the cancer specialist, can make a significant difference. Once you know the treatment pathway you are going to receive there are many other concerns. If you are going to have chemotherapy you feel very apprehensive. Much of what you hear about chemotherapy tells you how awful it is. You wonder how ill will I feel, am I going to be very sick, will I be able to go out, what will it be like without my hair, will I suit my wig.

Hospitals can be very daunting places, even if you are confident and not afraid. I remember waiting in a cubicle with an unflattering gown on wondering if I had been forgotten. Once you are on treatment you may still have questions to ask the cancer specialist. It helped me to make a list and have someone accompany me to the specialist or my treatment.

Pat Wallis

Pat Wallis

If you are still working there could be financial concerns. You may be off work a long time and may need support in identifying your rights re sick pay and any benefit entitlement. I was fortunate in that the company I worked for paid me full pay throughout but this is not the case for everyone.

When you are on treatment you feel secure, as you are seeing health professionals regularly. However once you have finished treatment you can feel as though you are alone and have to start adapting to life again. However you still have the stress of check-ups and learning to live as a cancer survivor, which can be extremely frightening. Another hurdle you may have to overcome, if you are still working, is your phased back to work and you may need help to explain things to your employer.

My own experience of undergoing cancer treatment was very positive and as I have stated I cannot fault the treatment I received. I tolerated chemotherapy well and it was not an awful experience for me, I only missed going out for one day. When I lost my hair there were some benefits to wearing a wig, no bad hair days and I saved a fortune in shampoo. I was lucky that I had no financial problems. Throughout my treatment and after I was extremely lucky to have a supportive network of family and friends around me. However I recognised that there would be some people without family or friends to support them through the journey.

I decided to volunteer for the Cancer Older People and Advocacy project with Sefton Pensioners’ Advocacy Centre as I felt I could use my experience to support others. I recognised that my experience enabled me to support people, with cancer, from a standpoint of understanding the issues and concerns they were experiencing. I know that I could not have managed without the support of my family and friends and therefore understand how important it is to have someone else on your side. Having recognised the difference that support made to me I wanted to be that person for others. I enjoy what I do and the difference it makes. Given the choice to volunteer again I would still make the same decision and would encourage others to think about the positive impact they can have by offering their time to volunteer.

Pat Wallis
Peer Volunteer Advocate
Sefton Pensioners’ Advocacy Centre (SPAC)


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Volunteer Peer Support Advocacy

Our advocate was asked to support a gentleman who had recently been discharged from hospital with a terminal cancer diagnosis. He had made the very difficult decision that he wanted no further treatment after trying a session of chemotherapy and finding that he struggled to cope with the side effects.  The chemotherapy was to help shrink the tumour only. The gentleman decided that he wished to look for a care placement to allow him to be cared for outside the family home. With the assistance of a Volunteer Peer Advocate he was supported to view care homes in his local area to enable him to remain close to his family. He wanted to spend the remaining months of his life with as much dignity and independence as possible.

The gentleman’s wife has advanced Alzheimer’s and lives with his daughter – her full time carer.  He wanted to put no further pressure on his daughter as caring for his wife was a full time job, also with the insight and understanding that his care needs would only increase, this in turn would increase her already heavy workload.

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Our advocate was able to support this gentleman to act independently from his family with his choice to move into a residential home. He was accompanied by the advocate to view the care homes and the advocate helped him to discuss his care needs with staff and what the future will hold for him in respect of his terminal condition.

 ‘Their involvement meant the gentlemen could maintain his independence’

 

 Laura Thomas, Cancer, Older People and Advocacy Programme, Age Connects Cardiff & the Vale


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Eura’s Story

My name is Eura and I am 76 years old.  I was diagnosed with lung cancer in May 2014.

 To say the diagnosis was a shock is an understatement. 

 I telephoned Age Connects in relation to another issue and I was informed about the Cancer, Older People and Advocacy Project.

The thought of attending chemotherapy on my own was very scary, but Age Connects reassured me that this would not happen.

 I met the co-ordinator Angela who then introduced me to my Volunteer Advocate. 

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The match was made in heaven as myself and the Advocate both love to travel and have visited many countries so have lots in common. 

We chat non stop while I attend chemotherapy, and this really takes my mind off what is happening…. 

 Age Connects have been so very supportive to me, I really feel in times of need I have someone to talk to and also to discuss things with – a listening ear!

 I am so pleased I made that call – I no longer feel I am facing this horrid disease on my own.

 

Laura from Age Connects Cardiff says:

Within 3 weeks of the initial phone call to Age Connects, Eura had met with Angela and then her Volunteer Advocate.

The Advocate has been able to support her with writing letters, get her benefits advice and has provided her with emotional support both at appointments and on the telephone. From the time the Volunteer Advocate was introduced in September Eura has received support over 20 times. Working together they are producing an action plan for the time and support needed for the New Year.

Laura Thomas, Age Connects Cardiff

 

 


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Margaret’s story

Recently we met Margaret Corbett during one of our Cancer, Older People and Advocacy workshops at Macmillan’s Cancer Voices Conference. This is Margaret’s story of being an older person diagnosed with cancer:

I am over 80 and a long-retired medic. Early in January 2012 my breast cancer diagnosis was made promptly, surgery, tamoxifen and a course of radiotherapy was recommended as treatment. At the end of radiotherapy I was told to expect a follow-up appointment in Oncology. Meanwhile I was invited to a specialist nurse-led group meeting. We were given a carefully prepared and designed leaflet. Topics covered included exercise, diet, lose some weight if you can, body image, sex life, risk of lymphoedema and what to do. All very good advice but I seem not to have taken it in for months, though I was living healthily and getting considerable benefit from regular exercise and significant loss of weight.

 

The treatment seemed not nearly as much trouble as I expected, but I felt mysteriously mentally distressed, a finding that I had not anticipated and found very worrying. At my first oncology follow-up appointment I was ashamed and denied any psychological problem. I had not then discovered how common it is to have such feelings. I was given a note and asked to make an appointment for a year later and I felt somewhat reassured to have the date and time firmly assigned.

 

Much of my problem has been the idea that my treatment had been ‘easy’ because of my age. I felt left out and under treated. I now believe that this was a completely wrong concept. At my first follow-up appointment I was very concerned about my prognosis. I asked why I had not been offered any form of chemotherapy. My oncologist left the room and returned with a sheet of paper showing the result of a computerized predictive tool. He said “Well, it would only make 1% of difference and it’s not safe you know”. If only he had said (without getting any printout) “We have a guiding rule here, we run this predictive tool and if chemotherapy would make less than 3% of difference we do not offer it, between 3 and 5% difference we discuss it, and over 5% we advise a course of chemotherapy”. I hope that I would have been able to accept that and I believe it would have saved me a great many bad feelings.

 

At the end of the summer I joined a Macmillan-backed Womens’ Support Group and from them was able to access a local HOPE (How to Overcome Problems Effectively) course consisting of seven sessions similar to group therapy with exercises in various calming techniques, and also, concurrently as it turned out, some sessions of counselling. The well run HOPE course worked really well for me. I was able to understand that other people had similar reactions so that I could stop feeling so psychologically abnormal. We had shared experiences and we helped each other.

 

My counselling sessions were also very helpful as I was able to identify that I have a problem with anger. It has been most helpful to know this though I haven’t done anything further about it since.

 

I would have liked more information. It would have been very acceptable on paper but, because of my undoubted denial and psychological stress, I would have liked to be offered the information more than once – perhaps even at every follow-up appointment until I could say that I didn’t need it. I now believe that treatment is offered to older patients on a basis of performance status rather than on age. I have now had the switch from tamoxifen to exemestane that was so briefly mentioned right at the beginning and I am delighted about this. There is still no written forward plan but I am less concerned than before as I do now feel carefully managed and well looked after.

 

An offer of advocacy support as part of the follow-up at the end of radiotherapy would have been very timely, though in view of how mentally strange I felt at the time I might not have accepted it. I did not ‘feel myself’ and I can’t judge how someone else would react.

 

The oncology staff do know that the end of treatment is a difficult time for many people – ‘the Lifeboat Syndrome’. Advocacy might be just the thing, possibly offered fairly firmly.

Margaret Corbett


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Why is peer advocacy support so vital for older people affected by cancer?

Kathleen Gillett from project partner Dorset Macmillan Advocacy and  I recently presented workshops at Macmillan’s Cancer Voices Conference. During the workshops looking at our Cancer, Older People and Advocacy project we had the pleasure of the company of 21 people affected in some way by cancer. Most of them were older people, many diagnosed with cancer.

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We introduced the project, explained about peer advocacy and told everyone where the service is currently available. We also talked about working in partnership with Macmillan Cancer Support and how we’d both like to see a future where every older person affected  by cancer who needs peer advocacy support can get it.

Jo Coulson.  Staffordshire Peer Advocacy Project on left with Kathleen Gillett of Dorset Macmillan Advocacy

Jo Coulson. Staffordshire Peer Advocacy Project on left with Kathleen Gillett of Dorset Macmillan Advocacy

Near the end of the workshops we asked those in attendance about where they thought advocacy support might have been or would be useful in the cancer journey and here are some of the responses:

When given a diagnosis of a short time.

To support person in their decision where to be if not want to go to hospice or hospital.

At diagnosis and contact before the service kicks in.

When I left hospital after surgery.

As someone who has vocal problems, sometimes having someone to speak up for us can be very helpful.

Someone to be with – a friend.

Explain what is happening and treatment.

One to one talk important.

Support after end of treatment – say a couple of months after.

To find out information about treatments.

Getting doctors and hospitals to provide the best available treatment, getting doctors to prescribe the most appropriate drug treatments, having someone to be there during chemotherapy. 

She died so close after her diagnosis there was even more reason for her to have someone outside of the family to perhaps support her!

Since my grandfather’s diagnosis he has had little input. We as his family have been his advocates but it would be helpful if he was able to speak to someone one-to-one so he can have a say.

When my grandmother was diagnosed with stomach cancer there was no advocate to support her and speak about thoughts she probably didn’t want to share with her family.

Finding a local support group.

Help to research alternative surgery.

Signposting to the right advice about benefits and finances.

Support when the patient’s choice is not what the family wants.

There are so many times and places that a peer advocate’s support could be helpful. It’s one of the main reasons we’re proud to be further developing this work. Every peer advocate our delivery partners recruit, train and support leads to even more older people affected by cancer benefiting. Join us in the call to make this service available to every older person affected by cancer who needs it, no matter their circumstances or where they live.

 

Marie McWilliams, OPAAL


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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