Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Leave a comment

Mike was terrified of meeting with his doctors, Bob helped build his confidence and gave a voice to his fears

Today’s blog post comes from Ang Broadbridge, OPAAL’s Deputy CEO talking about our latest Older People’s Cancer Voices film.

The COPA programme is complemented by our Department of Health funded Older People’s Cancer Voices project; it’s about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision.  I’ve been leading this project for 18 months and we’ve tried to give older people access to a wide range of tools to support them to share their experiences.  I’m really excited about the films we are working on with older people.  Bringing their stories to life and seeing advocacy partnerships on screen draws a focus to the many benefits of advocacy, highlights the impact of cancer for older people and shows the strength of those partnerships.

We work with vulnerable client groups and this has been our first foray into filming one to one with advocates and their advocacy partners.  We wanted to be brave about telling these stories and not shy away from difficult topics, working alongside older people to bring these issues to light sensitively.

Mike’s Story, recently released on our YouTube channel highlights some of the many issues advocates support older people affected by cancer with.  Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate.

Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer.  He describes feeling terrified and disillusioned, sometimes suicidal.  Bob was someone he could talk to, someone who really knew cancer, Mike says he feels it is essential “to talk to someone who has had similar experiences”.  Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis.

Bob helped Mike with a wide range of issues; helping to organise his paperwork including identifying pensions, speaking to HMRC and helping him to complete his tax form, encouraging him in his progress overcoming alcoholism, encouraging him to take steps to pick up the telephone and return to the local project who were supporting him with his recovery after he lapsed following his cancer diagnosis, reassuring him about side effects of treatment, ensuring health professionals were made aware that he could feel claustrophobic in smaller spaces, and at first representing his wishes and needs, later encouraging him to have the confidence to do these things for himself next time.

Bob reflects on how the objective of the partnership, to help Mike to stand on his own two feet and express his wishes, has been achieved and he feels he has learned a lot from Mike too, and the many other advocacy partners he has supported in his role.

You can find out more about Older People’s Cancer Voices by following the hashtag #mycanceradvocacystory on twitter, and by following OPAAL’s YouTube channel.

Advertisements


Leave a comment

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. 

Untitled

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. 

DMA logo

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


1 Comment

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.

200px-LGBT_flag (2)

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


Leave a comment

The diagnosis of cancer was incredibly difficult for him to come to terms with

This year’s Volunteers Week is 1st to 12th June and we’re recalling stories from some of our amazing peer volunteers. In today’s story dating from 2014 we hear from Bob, a volunteer peer advocate with Dorset Macmillan Advocacy. Bob supported Brian who was diagnosed with Myeloma:

Brian is very intelligent, friendly and outgoing with a great sense of humour. He can no longer drive and is in constant pain of varying levels and physically weak. He can only walk a matter of yards with the aid of a walking stick or frame.

He lives alone in a small communal block of flats and when I first met him had extremely low self-esteem. Although previously very well-travelled and active he felt that he had few future prospects of a happy life. He found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.

volunteers-week-2016-logo

The diagnosis of cancer was incredibly difficult for him to come to terms with. Even though in remission when I met him, it was still hard to bear. He still has a few good friends but is no longer independent so cannot socialise as much as he would like. He spends most of his time in his flat watching TV.

Brian’s cancer is now inactive and in remission for 2 years. He has regular appointments with his consultant and GP, both of whom he has a great deal of respect for. He speaks very highly of his current medical professionals. A variety of pain relief drugs have been tried and the latest drugs give relief for 12 hours each day as a maximum dose.

He sometimes becomes confused and forgetful. He has sometimes taken the wrong drugs or has forgotten to take them leading to potentially very serious problems. These have included passing out and hallucinations. I was present at one of these events. I’ve spoken to his nurses, doctors and consultants for his safety when he has taken incorrect medication.

Brian always speaks openly and honestly to me and we have a very good relationship. He knows that I understand him, will help him where ever I can and that I will never impose my views on him. We explore options to overcome problems or achieve things he wants to do. He loves to have a laugh and a joke too and not always to be reminded of the negative side of his situation.

I’ve arranged a bus pass, trials of motorised scooters, membership of the Myeloma Support Group and taken him to a meeting to introduce him. Whatever information Brian needs I source and provide it. Brian is able to speak up for himself. He did have an issue regarding his pain relief when in hospital. He decided not to take this further although I explained what the process would be to make a formal complaint.

Photo of Bob Smith Dorset Volunteer

Bob

Brian’s image of himself is now far more positive. He smiles more and we laugh and joke more than he used to. He has started to socialise more and is keener to “improve his lot” and not just accept his current situation. We have made a “bucket list” for 2014. I will help him achieve the things he wants to on it and help him make a list for 2015 too.

Brian is much happier to use aids such as motor scooters and walking aids than he used to be. He used to say that “only old people use those” (I have convinced him otherwise). Brian says he looks forward to our visits and really values them. He didn’t regularly contact his friends but now has an item on his bucket list to do this fortnightly. Several items on his bucket list show a massive improvement in his outlook. He will question his pain relief regimen himself now to gain improvements and changes.

When I met him at first he said “I am no longer any use to anyone. I will never have another relationship with a woman.” Now he says he looks forward to me visiting and having talks with me and he feels more positive about himself and he’s happy with his “2014 bucket list”.

index

 

Bob’s view and Brian’s story can be found in full in our publication Every Step of the Way which can be accessed here

 

 

Marie McWilliams, OPAAL


Leave a comment

Emotional exhaustion

I’ve just watched the BBC One programme The Big C & Me. I didn’t watch it because I wanted to rather I watched it because I felt I should. As the mother of a now 25 year old son diagnosed with secondary cancer almost 18  months ago I now realise that I have been actively avoiding programmes, books and articles about cancer.

Now that’s a bit ironic when I do the job I do and which currently is heavily focused on advocacy for older people affected by cancer. Personally, I call it self-preservation.

Well, watch the Big C & Me I did. It tells stories of real people affected by cancer. It has happy moments and deeply sad moments and this is only episode one. It’s narrated by the BBC’s own Victoria Derbyshire who was diagnosed with breast cancer last July and who filmed her own breast cancer diary.

While watching the programme it really hit home to me where our peer volunteer advocates make the biggest difference when supporting other older people affected by cancer. It’s because they’ve been there, done that and have the t-shirt. As I watched Yvette, one of the three people featured in the programme, receive bad news I relived that moment when my son received his traumatic news. I know all too well that heave in the pit of your stomach. Our peer advocates know that heave too. They understand the absolute emotional exhaustion that can take hold at any point in the long haul of living with cancer.

Our wonderful medical staff treat those diagnosed with all the tools available to them. However, unless they’ve actually been on the receiving end of a diagnosis they can’t fully comprehend the impact. Our advocates can and that’s what makes the support they provide so unique. It’s that understanding which nurtures the supporting and empowering advocacy relationship.

One issue raised in last night’s episode of the Big C & Me was about how those affected by cancer don’t want sympathy. Ideally, they don’t want friends and acquaintances to treat them any differently than before. With that in mind the BBC and the Open University have produced a booklet entitled The Big C: Making a difference for people living with cancer. To find out more and to order a copy of the leaflet click here

page_superpromo_bigc

The Open University is also running a discussion hub “What is helpful for someone undergoing treatment for cancer: Which little kindnesses can you employ to help someone who is undergoing treatment for cancer and their families?” You can join the discussion forum here to have your say.

Marie McWilliams, OPAAL


Leave a comment

Advocacy is a serious business …

Today Pat McCarthy from KPAIS tells us about Advocafe:

Advocacy is a serious business…..

Except when it’s not!

Here at KPAIS we have been trialling a new initiative for older people in Knowsley.  We’ve called it Advocafe. It’s a way of getting older people together in a social setting to encourage peer advocacy and peer support. Ideal for our Cancer, Older People and Advocacy project.

So, over a cup of tea and a French Fancy we’ve shared information on advocacy services and health prevention ideas.  And we’ve asked all the people who attended what was important to them.  What do they want information about?  What would they like to see in these sessions?

Within 2 weeks new friendships had been formed, lifts were being given, wool was being shared.  And we were gathering really useful information about what older people wanted themselves.

Advocafe

Within our sessions we had all the information available about our Cancer Older People and Advocacy Service with the Every Step of the Way Books.  One woman told us about an experience she’d had many years earlier after a cancer diagnosis “I could have used someone like you back then!”  She was happy to share her experience with her table and she helped others to understand how the Cancer Older People and Advocacy service can help when you feel you need support.

One of our sessions brought in the cancer screening officer and it was so much easier to talk about bowel screening while we were all together, having a laugh, making it less embarrassing (one of the key reasons why people don’t talk about it).  And at another session we brought in the Ivan – Knowsley’s own cancer information bus.  Blood pressures were taken, advice was given and people felt supported and reassured that they could access this information.

We made Christmas cards (nothing like being prepared …) and gift boxes. This session was wittily titled ‘Advocrafts’ by one of our Sandwell colleagues!

Advocrafts

We made advocacy approachable and we’re now looking forward to taking our Advocafe out to the rest of Knowsley later in the year, with a steering group formed of our first attendees.  It’s such a good vehicle for taking our Peer Cancer Advocacy out into the community and hopefully reaching a wider group of older people.

Pat McCarthy, KPAIS, April 2016


Leave a comment

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.’

Getting Heard logo

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)