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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Sometimes people say they can manage when they can’t; Sometimes people don’t want to be a bother…

In today’s post, Tessa tells us about her first experience of being a volunteer advocate:

I am a volunteer McMillan advocate for Help and Care in Bournemouth, part of Dorset Macmillan Advocacy.  It was by chance that I found this position whilst looking on Google for volunteer positions in and around Bournemouth a couple of years ago.

My first client was over eighty, and had been diagnosed shortly before I met her with breast cancer. She needed help organising hospital appointments and support with coming to terms with a cancer diagnosis late in life. 

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Although she had no local relative support and lived alone she had a no nonsense approach to life and a wonderful accepting attitude towards her illness.

As my first partner she was a delight, any nervousness about my role quickly disappeared as she informed me clearly about her needs, moving on quickly to find out about me.  She had the most wonderful stories she wanted to share about her life and was so grateful for me just being there, never mind when I did things for her.

I arranged to take her myself to her first appointment after her operation with the Consultant.  This was a real eye opener, as I had not considered the difficulties involved in taking an elderly person to hospital alone.  Dropping her off at the entrance to the hospital seemed to go well.  She insisted she knew where she was going, and would meet me (after I parked the car) in the department.  So far so good.  Fifteen minutes later when I got to the department there was no sign of her and I began to panic.  She did not in fact have any idea about where she was going and as I rushed around the huge hospital back tracking to where I left her my heart was in my mouth.  Fortunately I found her standing by a lift, telling a kindly orderly that she was looking for me.  He was looking bemused by her and so when I suddenly flew around the corner and she saw me we all sighed with great relief.

Tess

Tessa

The meeting with the Consultant went well. Although my partner was elderly, her amazing personality and zest for life endeared her to all.  I had been nervous about whether the professionals would accept me in my role but they were all respectful and accepting of my position.

Following this trip, I made arrangements for the ambulance service to pick her up and if I was required to be there would meet her at the required time.  Certainly it is always worth thinking about logistics and mobility before setting out on expeditions and this was one of my first lessons.

There has now come a point when my partner no longer requires my assistance and so I had to go through the process of letting her know and saying goodbye.

This was very hard, we had formed a great bond, she relied on me to read letters to her and organise appointments but from a cancer perspective she did not really need be to be acting as her advocate any longer.

I understood this but on the other hand I felt great sadness at having to say goodbye to this wonderful, brave woman. 

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Over three weeks I prepared her for our ending and on the final day we hugged, we both understood it was at an end but it felt sad and I could see she was a little confused.

 I am grateful for this first experience as a volunteer advocate.  As an advocate you really have no idea what your partner’s needs may be and they can evolve as their treatment and circumstances change.  As an advocate you need to be conscious of this.  For me it is an extremely worthwhile and very necessary role.

Things I learnt:

Sometimes people say they can manage when they can’t

Sometimes people don’t want to be a bother

Sometimes people are more ambitious than they are capable of and need a little help

This has taught me to listen very carefully to what is being said and to try to ensure that my partner feels they can ASK for help and know they are not too much trouble.

Tessa Watts, April 2016


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I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me.

In today’s post Roger Newman explains his feelings around being a gay man with cancer:

Its over 40 years since I took my first major steps in ‘coming out’ as a gay man. Not for me the carefully staged video explaining to adoring fans that I was dating another man and nor for me the consequent letters of congratulation arising from it. No this was and, still lingers in the memory as, a major event accompanied by not a little trauma. In the space of just a few days I stood before distraught parents, an incredulous spouse,  and unbelieving fellow workers, telling all of them something which obviously seemed to them, at the time, as being not far from the announcement of the imminent end of the world. For me I feared that it might indeed mean the end of my world.

The years have considerably numbed that feeling. Well, at least that’s what I thought had happened until just a few months ago when I was diagnosed with breast cancer and faced two bouts of surgery, with stays in hospital.  You probably don’t see any link so far in the story so let me explain.

My ‘coming out’, like that of most LGBT people of my age was always going to be a selective process and was accompanied by the building of defensive walls around my life, just in case I might find myself in situations where being known as being gay might be a threat to my security. I had never felt that I needed to tell everyone but, once in a settled situation, I didn’t need to deny it either. All those who mattered to me knew the facts and when I felt safe enough, in a professional and less personal situation, it didn’t require much courage to admit it there as well.

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The days following my breast cancer diagnosis have signalled a change in those feelings. I have been so fortunate to have a loving husband with me when all this kicked off but I hadn’t expected that now would begin a Stage Two of my coming out. I had never envisaged that there might even be something called ‘Stage One’.

To begin with I felt it necessary now to say to those dealing with my cancer care that nothing short of proactive acceptance of me and my sexuality, and of our relationship, was what we both wanted and I was clear what that acceptance might entail. It mattered to me that when the lovely cancer nurse phoned she began by asking if it was Nigel or Roger she was speaking to, an approach so much more acceptable than simply asking ‘Can I speak to Mr. Newman, please’. For us that was a sign of what we would call proactive acceptance.

When after my mastectomy operation, and told that I was being moved into another ward, when I asked that my partner be informed, and told that yes, SHE would be told, I felt I had to make it clear that such mistakes should never need to happen, since it should be basic in service providers training that a person’s sexual orientation should not be presumed. Having a proactive approach to inclusion  means  that if 5% of the adult population is LGBT, and if in one day you are dealing with, perhaps 20 clients, then one must assume that at least 1 of them might be LGB or T.  In that hospital ward I was that 1 in 20; they got it wrong and it mattered to me.

Nigel and Roger

Nigel and Roger

More significantly, however, my stays in hospital have had a totally unexpected effect. To be honest, I have gone back into the closet, when there!!! I had thought that those days were long gone, but now here they were, alive, kicking and frightening. I was appalled to find myself feeling that I was in a threatening environment. The conversations, times of visiting, and the general atmosphere, were so different from the gay culture, which I now realise had come to dominate the way I lived. So now I felt completely at sea and needing to be careful about what I said. I was anxious about the personal details I surrendered. I hardly dared mention a partner and I even found myself begging him not to kiss me when he visited me. His response, as expected, was ‘bollocks to ‘em, I love you’, but on his visits I could see the eyes taking it all in; sorting and codifying the resulting information. I found myself telling him that it was OK for him because he could take our lifestyle back home with him whereas I was left to deal with the consequences. I was profoundly disturbed by having these feelings and I felt guilty about them, but the fact was that there I felt and believed myself to be different. I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me. Just someone with a ‘Me Too’ badge on them, would have helped.

So that’s where we are at in this stage of my cancer journey;  always hoping that proactive responses to us and our orientation will enable creative engagement to take place; knowing that there will now be a more regular need to ‘come out’ to others as the chain of service provision progresses and with the additional  fear that someone will respond in a less than satisfactory manner; and being so very grateful that, unlike the majority of LGBT people of my age group, I am not alone in facing the challenges of my condition. More of that last point perhaps in another blog.

You can follow Roger on Twitter @RogerNewman6 and read his personal blog here


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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


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The C Word

Look out for Sheridan Smith portraying Lisa Lynch this Sunday , May 3rd.

Lisa was diagnosed with breast cancer at 28. She decided to blog about her experience of the C Word and to “tell it the way I see it” – it was the only way to cope with whatever came next.

Lisa Lynch studied journalism with the ambition of one day editing Smash Hits. But as something called the internet happened and her favourite magazine became no more, Lisa found herself writing about wallpaper instead of Westlife.

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At the age of 28, while editing her second national interiors title, Lisa discovered a lump in her breast – a lump that spawned not just grade-three cancer, but a blog, a book, a writing career and a BBC film. (Talk about milking it.)

Some three years down the line – with newly grown hair, a newly published book and a newly perky rack – Lisa dared to assume that she’d seen the worst… only for the c-word to crop up once more: this time in her bones and brain, and this time incurable.

You can read Lisa’s frank blog here

One in three of us is likely to be diagnosed with cancer and every single one of us will be directly affected by the diagnosis of a loved one or friend. I know how that feels, my 23 year old son having been diagnosed with a mediastinal germ cell tumour on Christmas Eve.

Everything about a diagnosis is devastating but the inability of some people to know what to say to you in the circumstances comes as quite a shock. Some people decide simply not to talk to you at all. Either for fear of upsetting you or from simply not knowing what to say.

If that’s you, at the very least please just tell the person affected you’re thinking about them. If you know them well then give them a hug. A hug can mean you don’t need to say anything.

Our peer advocates are supporting many older people affected by cancer; those either with a diagnosis or affected by that diagnosis (like me). They listen, they support, they encourage but they never ignore.

If you’d like to find out more about peer advocacy support then comment on this post. We’d love to hear from you.

The C Word can be seen on Sunday 3 May on BBC One at 2030 BST.

Marie McWilliams is OPAAL’s National Development Officer and leads on the Cancer, Older People and Advocacy programme.


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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.