Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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People Affected by Cancer: Not Alone

“What’s that tardis-like box doing in Churchill Square?” That’s what shoppers in Brighton were asking on the last Friday in August.

The isolation box, a touring art installation by Macmillan, was raising awareness that ‘cancer can be the loneliest place’.impetus logo (50mm)

Members of the public were invited to try the isolation box and experience how it feels to be alone in a crowd. Once inside participants could listen to 2 real-life stories told by local people, John and Sarah, about their experiences of having cancer. John, 64, from Hove talked about how lonely his diagnosis made him feel. A few passers-by shared their own stories.

From the outside you could see into the box, but once inside I could see only blurry figures. Amidst the buzz of the busy shopping centre, with people all around me, I felt cut off from the crowd. For those few minutes, despite being aware of people and voices surrounding me, there was a barrier between me and the rest of the world.

The isolation box

The isolation box

People affected by cancer can feel incredibly lonely even when they have friends and family. Research has shown the devastating impact of loneliness, causing people to skip meals, attend vital appointments alone or even refuse treatment. Over 60% of patients go for surgery and radiotherapy appointments alone. Many said this was because they didn’t want to burden friends or family, or the person they wanted to go with them was not available. Some people had nobody to ask.

So what support is there for isolated cancer patients in Brighton? The Macmillan Impetus Cancer Advocacy Service works with some of the most isolated people affected by cancer in Brighton & Hove: older people, people with mental health problems, people with learning disabilities and people with autism spectrum conditions.

They may have limited support networks, or find it less easy to access the information or support they need.

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For someone affected by cancer there can be lots of information to take in and decisions to make. Navigating the complexity of health and social care systems can be frustrating and difficult.

Cancer is a life-changing experience. It can generate anxiety and stress and people may lose confidence. This may limit their ability to deal with life in the same way as they did before becoming ill.

Sam Bond

Sam Bond

Having someone to help can make all the difference. Advocates act for the person they are supporting. They can visit the person at home or another setting. Advocates have time to listen and find out what is important to the individual. They can help people sort out many of the issues that arise when someone is affected by cancer, as well as general-life difficulties which the person may find it harder to deal with. Advocates can find out about support and activities in the person’s own community.

Cancer Advocacy support aims to reduce isolation, link people up with the support they need, and ensure they are able to make informed choices and express their wishes.  This benefits the individual and everyone involved in their care.

Reach out to someone affected by cancer who may be isolated and lonely. If you know someone who would like the support of one of our cancer advocates, contact The Macmillan Impetus Cancer Advocacy Service on:

01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Brighton & Hove Impetus

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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.

OA

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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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 I’m a Local Cancer Champion in Knowsley

My name is Mary Spreadbury and I am 72 years of age. I have had cancer 3 times and I am still living a busy life and most of all I am enjoying myself.  I sit on the Local Cancer Champions Board in Knowsley, where KPAIS are delivering the Cancer Older People and Advocacy project.

KPAIS

I would like to share my experience with you. I have had 2 mastectomies and reconstruction.  The first mastectomy was in December 1995 when I was studying for my degree.  I had 6 weeks of radiotherapy (of course weekends off for good behaviour!) I went back to college and continued with my studies.  The second was a year later almost to the day in December 1996.  Then chemo and all that goes with it.

 I have had a few frights along the way.  At one time they thought the cancer had gone to my lungs, but luckily enough it was found to be the damage caused by the treatment that I have had to keep me alive.  Another time there was a lump in my neck, that was fatty tissue and so it goes on.  I always smile when they tell you that you are in remission, whatever that means.

 

Mary Spreadbury

Mary Spreadbury

I only had advocacy help in the last couple of years.  As I’m getting older I feel I need specialist help because my needs change with ageing.  This is why I’m volunteering with Knowsley Cancer Older People and Advocacy as it’s so important that advocacy for older people affected by cancer is a must.

Mary Spreadbury, Local Cancer Champion, Knowsley


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Relay for Life

You may have noticed a comment published after we issued a post about the National Cancer Survivorship Initiative. The person who commented was Pam Bentley and we are happy to help raise awareness about the Relay for Life that Pam is involved in. This is Pam’s original message:

I had breast cancer 26 years ago and survived. I have recently completed 6 months chemotherapy and 4 weeks of radiotherapy, as breast cancer has presented in the second breast.

Since my first diagnosis I have worked tirelessly, raising funds for cancer research, and am currently Survivor Co-ordinator for Bournemouth & East Dorset Relay for Life, being organised by Cancer Research U.K. to be held in Ferndown, for the 7th year in Ferndown on 12th and 13th July, 2014. Details of Relay, as opposed to Race for Life can be found here.

My reason for contacting you is to invite as many cancer survivors, living in the area along to our event.

Relay for Life

Relay for Life

Survivors are NOT asked to fundraise, they are asked to celebrate their survival. To this end survivors take part in the opening lap of honour, and are then invited to a celebratory party, with entertainment (all donated). This takes place as the actual teams begin their 24 hour Relay on Saturday 12th July on the field behind Ferndown Leisure Centre. As mentioned previously full details can be found on our web site.

I have been organising this part of the event since its induction, and all the survivors have enjoyed the occasion, feeling uplifted at seeing so many young people, inspired to fundraise for medical research.

I do hope you are able to publicise this event on our behalf.

Many thanks, Pam Bentley, Survivor Co-ordinator, Bournemouth & East Dorset Relay for Life.

P.S. We are a small, entirely voluntary committee.

 

We’re happy to support Relay for Life on our blog. Good Luck!


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Someone to rely on

Recently project partner Dorset Cancer Advocacy was featured in the following article in the Dorset Echo.

Someone to rely on- Dorset Cancer Advocacy offering support to older people with cancer

Dorset Cancer Advocacy is an innovative service that offers support and information to older people with cancer.

Dorset Echo: REGAINING CONFIDENCE: Breast cancer survivor NinaMarion, Nina’s advocate

Here Nina, 69, a Bournemouth widow who has been battling breast cancer, explains how it helped her cope

“Before my diagnosis I was enjoying retirement and keeping active by walking and cycling, I had never felt so well. I was diagnosed with breast cancer following a routine scan and have undergone nearly a year of treatment since then, including two courses of chemo-therapy, surgery and radiotherapy.

I feel lucky that the cancer was found, but when they say cancer it knocks you flying. I’ve told some of my friends just the details that I want them to know, I don’t want to burden them.

I was taking part in a clinical trial during my chemotherapy course. The Research Nurse suggested I try the Dorset Macmillan Advocacy service as it offers home visits.

Dorset Echo: MAMOGRAM: Screening is to be extended in older womenMAMOGRAM: Screening is to be extended in older women

The service co-ordinator came to meet me at home and then supported me for a short time, including with hospital appoint-ments, before introducing my volunteer advocate Marion Summers to me.

I could share my feelings about the cancer and what has happened to me with the co-ordinator and Marion. I knew they were there to support me. The effects of the chemo-therapy meant I would forget what people said; I felt turned inside out. Other side effects meant that I stopped driving and lost the confidence to use the bus and to go out.

Marion took written notes at hospital appointments for me to refer to afterwards. When I was offered surgery I felt stunned; I wasn’t sure how I would manage at home alone afterwards.

Before my operation Marion gave me information on getting extra help at home and meal deliveries, in case I needed it after my operation, and she also looked into local health walks.

After my operation Marion called to see how I was and find out when I would be going home.

I felt more confident with someone behind me. I was quite afraid of one particular health professional and, when we went in for the appointment, Marion said ‘We’ll do it together’ which helped a lot. I feel listened to.

Now I am getting out more, driving my car again and using the bus for local trips.

It is good to have someone else to rely on when you are alone. After my operation Marion said ‘We’ll be there for you’. It gives you a warm feeling someone saying that.”

One in three are over 70

There are around 1.3 million older people (65+) living with cancer in the UK One in three cases of breast cancer – and more than half of deaths – are in women who are aged 70 or older. Despite this, the age group is not routinely screened, although the cut-off age for screening is to be extended to 73 by 2016. One study has found that elderly women are being denied life-saving breast cancer surgery routinely given to younger patients.

You can read Nina’s story and Marion’s take on advocacy support in Every Step of the Way, our new publication.