Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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Having finished her chemo Nina accepted my offer to take her out for coffee and a good chat

This Volunteers Week we’re look back and celebrating some of our amazing peer volunteer advocates. Today Marion of Dorset Macmillan Advocacy tells us about supporting Nina:

My first impression of Nina was of a rather shy person and not feeling very confident. Her diagnosis had rather ‘knocked her for six’. I was matched with Nina because we are of a similar age, and I would like to think it was also because the coordinator felt I could help give Nina the support she needed to face the future with confidence.

I was able to accompany Nina to her 6-week follow-up from her mastectomy. She was given the news that she’d require further chemotherapy and possibly radiotherapy. This was devastating news for her because she knew it meant she would lose her hair and her immediate reaction on receiving this news was ‘You’ve taken my breast and now you’re going to take my hair too’.

There were a few tears but the Consultant was very patient and understanding and after re-explaining the programme of planned treatment he left us in the care of a senior nurse who was equally understanding.

Marion

Marion

I told Nina I’d also be there to support her through her treatment. Nina was aware of how her future treatment would affect her because she had had a course of chemotherapy prior to her admission for surgery.

On our journey home from hospital we chatted about the future and her treatment and by the time we got home she’d become a little more philosophical about things. I kept in touch with Nina in the following days.

When she received her first appointment for chemotherapy I offered to take her and wait until she had finished her treatment to bring her home again but Nina was quite adamant that she wanted to go it alone so I withdrew quietly but kept in touch making sure all was well. I know that Nina has had the support of her family and friends, has used public transport to get about and has even been driving her car.

Having finished her chemo Nina accepted my offer to take her out for coffee and good chat. Since then she has started her course of radiotherapy so we’ve yet to fulfil her wish to go shopping.

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I phoned Nina recently to get an update on her progress and to arrange an outing. She told me she has now finished her course of radiotherapy, she’s feeling well, is still a little sore from the treatment but has accepted this and feels sure it will get easier as time passes. She’s recently been out on the bus and enjoyed being out for the day on her own. This shows that she really has become a very confident and self-sufficient lady. I’ve arranged to pick Nina up and plan to spend a happy day with her listening, shopping and entertaining her. I feel she deserves it after such a traumatic cancer experience, an experience that came as a bolt from the blue.

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Marion’s view and Nina’s story can be found along with other inspiring advocacy stories in our publication Every Step of the Way which can be accessed here

 

 

 

Marie McWilliams, OPAAL


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this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence

Today’s post is from Rosie Young a peer advocate at Getting Heard (formerly Oxfordshire Advocacy). Rosie is also a local and National Cancer Champion and an older person affected by cancer who has used the Cancer, Older People and Advocacy service herself:

I read with interest the final report from Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester. 

A month ago Oxfordshire Advocacy’s Patient Experience Group, who are a group of volunteer advocates working on the Cancer, Older People and Advocacy Project,  currently also receiving cancer services themselves gave feedback to Healthwatch on our  experiences locally.  Surprise, surprise! this mirrored the key elements of the report and I share a few examples from this group below but first, a reminder of the Law on Consent, Risk and Information…

Montgomery v Lanarkshire Health Board Judgment 11th March 2015

The Supreme Court was fortunate in having submissions from Andrew Smith QC on behalf of the GMC.  The GMC submitted that an approach based upon the informed involvement of patients in their treatment, rather than their being passive and potentially reluctant recipients, can have therapeutic benefits, and is regarded as an integral aspect of professionalism in treatment. This was repeated in the Judgement in the Supreme Court

The court specifically stated that a patient must not be bombarded with technical information It is not up to the patient to find the correct expression of words. The onus is now firmly placed on the doctor to find out what their patients want to know

The doctor is under a duty to take reasonable care to ensure that the patient is aware of any: potential benefits, risks, burdens, side effects of each option, option to have no treatment and no pressure on the patient to accept advice.

 These stories are from Getting Heard’s Patient Experience Group who are not backwards in coming forwards!!

 One volunteer was told by the consultant “It’s your body – it’s up to you whether you have a biopsy or not”.  She added ‘I was given no explanation by my consultant as to what the consequences would be if I didn’t have the biopsy or what the follow up would be. Because of the change in my PSA reading (which had been stable for the past 5 years of tests) I decided to have the biopsy which indicated the presence of cancer. At no stage was I given any advice whether to have the procedure.’

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Another volunteer felt some pressure to accept the ‘Gold Standard’ and alternatives were dismissed. ‘After an operation in my left lung for cancer I was diagnosed a year later with a primary in my right lung. I was under considerable pressure to have a lobectomy from the Clinical Fellow and Specialist Nurse despite having significant risk factors which would have impeded recovery. In consultation with my GP, Palliative Nurse and family I opted for an ablation. The Specialist Nurse when I told her (having submitted a risk assessment) contacted my Palliative Nurse to question my capacity to make a decision.’

Below are some more examples from our volunteers  where they felt they should have been given better information.

Number of operations required

‘The number and extent of operations should be clearly spelt out. I was told that I would need a second operation for my agreed implant only as I was going to the theatre for my mastectomy. The implant later had to be removed in a third operation’

Long term effects of operations i.e. nerve damage

‘I have gone from a sixty plus active person to needing a blue badge, upper limit attendance allowance with severe restrictions on my social life because of pain’

Dismissing the long term effects of treatment

‘The long term effects of chemotherapy and radiotherapy should be clearly identified. I was never told about the lifelong problems to be encountered with radiotherapy, from which I am still suffering.

Attitude of my oncologist dismissing treatment that is causing anaemia as of little consequence – putting in an email that he would ring me if he had time – ‘

Side effects and effectiveness of drug therapy

Medication, such as Anastrazole, should be discussed and the side effects clearly spelt out. I have just cancelled my final two years of Anastrazole due to side effects and having discovered, with some difficulty the percentage risk increase of a recurrence of cancer is only 2%.

Rosie

Rosie

Overall our Patient Experience Group felt that urgent retraining in the legal and professional practical application of all aspects of Consent, Risk and Information is needed fast and nationally.  We must remember that this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence.

Rosie Young, Getting Heard (formerly Oxfordshire Advocacy)


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“everyone my client met treated her with dignity and respect”

Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:

I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.

Susan

Susan

The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.    

I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.

Getting Heard logo

By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.

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My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.

I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.  

Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)


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Max Neill

Last week we heard the sad news that one of our Older People’s Cancer Voices steering group members passed away. OPAAL’s Ang Broadbridge shares her thoughts on a recent blog post of Max’s that struck a chord with the steering group:

I met Max Neill in the summer of last year at a Coalition for Collaborative Care event; Max was sitting at the same table as me and he shared with us copies of his one page profile during the break.  I’ve worked with one page profiles with adults with learning disabilities, and our Cancer Older People and Advocacy partners were also exploring them with Helen Sanderson Associates so I was interested to know more.  Max told me about his bowel cancer diagnosis and how his profile helped him express his wishes; it’s always good to get chatting with someone who ‘gets advocacy’ and so I followed him on twitter.

Some time later, when we came to look for representatives for our Older People’s Cancer Voices steering group, my colleague Janet Cullingford from I-CANN suggested Max.  I hadn’t made a connection between his role at Connect4Life being based in the same locality as I-CANN but was really pleased when our paths crossed again and he agreed to join us.

Although he didn’t manage to make a steering group meeting we kept in contact via social media and the telephone, Max signposted me to lots of great resources and kindly said that he’d be happy for us to share aspects of his story from his blog as part of our Older People’s Cancer Voices storytelling.

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I found that everyone I came into contact with who knew Max spoke very highly of him, and his generosity of spirit, so at our last steering group meeting in January his ears must have been burning because we were talking about his latest blog post which we’re sharing with you today.  This post appeared on Max’s blog at the end of December 2015:

Christmas in the Hospice

I didn’t expect to be waking up on Christmas morning in a hospice.

But my life’s like that now. The results of one scan can throw all my plans up in the air.
And the results of my last scan weren’t the best I could have hoped for.

I’m far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.

I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.

So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.

And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.

Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!

Christmas was lovely here.

It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.

As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.

Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.

I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of  ‘professionalism’ or for countless other persuasive reasons.

The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.

I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”.  I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!

I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of  CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”

Time with family. Time with the people special to me. That’s what I’m focussing on right now.

Our thoughts are with Max’s family and friends.


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I am really glad to be able to put my experience to good use…

Claire from Oxfordshire Advocacy describes her recent experiences as a cancer advocate and the value of an advocate having a shared common experience with the person they are supporting.

I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.

Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

 Anne (not her real name) was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Anne lives alone, struggles to get out and had become very isolated & depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised the many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

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 In the first few weeks when I visited Anne at her home, we often would just talked and shared experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

 Since then, I have been able to help Anne in a number of ways. For example, I contacted Breast Cancer Care (I knew how good they were from my own experience) and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Anne suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Anne had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the MacMillan website ( Anne doesn’t have a computer or access to the internet) and took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects. 

homecare12A-300x225Most recently I was able to help Anne with her application for a one-off MacMillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her (and I could use my experience to help with the spellings of all the drugs she was taking!). She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

 I hope that with these few examples I have managed to convey that working with Anne has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system & how to get support. I am really glad to be able to put my experience to good use.

Claire, Oxfordshire Advocacy