Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Have you voted in the blog awards yet?

OPAAL has been nominated for a UK Blog Award (best health blog) and we’d really appreciate your vote to help us show that #advocacyworks!

We use the blog as a space where we can amplify the voices of older people affected by cancer, giving them a platform to tell their stories. We have made a decision to be brave about the stories we tell, touching on issues including end of life, bereavement and the realities of living with a cancer diagnosis, either as a patient, a carer or both.

The next stage of the process is the Public Vote, which began on Monday 5th December and runs until Monday 19th December at 10.00am. The UK Blog Awards committee tell us that the calibre and standard of candidates who have entered and been nominated has raised the bar for another year and they cannot wait to award the UK’s content heroes and heroines of 2017!
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The awards are now in their fourth year and have seen a substantial increase in quality of entrants. The UK Blog Awards are the biggest and UK’s longest running programme to recognise influencer talent. 

The Public Vote is an important aspect of the process, as it allows our community to have their say and to show their support for our content. The voting process is quick, simple and effective.

All votes are cast directly from the OPAAL profile page on the UK Blog Awards website. Our page has a unique URL link and can be accessed by clicking here
Marie McWilliams, OPAAL
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I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity.

Did you know that as part of our work we’ve developed Quality Standards for the provision of advocacy support for older people affected by cancer? The standards set out what clients should expect when they receive independent cancer advocacy services.  They are the standards that are demonstrated on a day-to-day basis by good older people’s cancer advocacy services.

The standards are a way of us reinforcing and demonstrating professionalism and commitment in our cancer advocacy service delivery. There are organisational, partnership, monitoring and evaluation, service provision and training, supervision and support standards. Each standard contains a series of statements that, taken together, signify what a good older people’s cancer advocacy service looks like.  It puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.

ICANN is the first of our delivery partners to go through the cancer advocacy Quality Standards audit process and we’re delighted to say, the first to receive their compliance certificate from OPAAL. Many congratulations to them.

ICANN QSCertificate

In today’s blog post, Sandra from ICANN tells us about the process:

As a volunteer with ICANN based in Preston Lancashire, I was flattered to be asked to consider looking to see if ICANN is meeting the Quality Standards for the provision of advocacy support for older people affected by cancer. Was it something I might like to have a look at, as to whether we would be eligible to apply? As always Janet treated me as a volunteer so no pressure however a chat over coffee and I was happy to have a go.

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I spent a couple of hours at home looking through all the audit requirements and going through all the data on the ICANN website that I thought would fit. I was pleased to see that ICANN could measure up to meet most of the requirements and was aware in a couple of areas there would be more material available by talking to other volunteers.

Sandra

Sandra

I set aside a Monday morning with Janet in the ICANN office and we went through all the standards categories filling in some of the blanks. Only one area needed to be addressed which we talked to the CEO about. Later I also spoke to two other volunteers for help and input in their speciality areas, which was very useful.

A few weeks later I spent a further two mornings in the office mostly spent writing up a fair copy, and checking policies and procedures were as requiredI am pleased to report that the area missing is now in place. I found it useful to complete most of the work in the office as Janet and Pat (Admin) were on hand to help with any queries.

I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity. Going for the Quality Standards is the right thing to do and I did not find it too onerous.

Sandra, ICANN


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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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Guinea pigs in London!?

In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:

On the 16th and 17th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.

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This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.

There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.

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At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.

Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.

It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!

Karen Pigott, Macmillan Project Coordinator, Dorset Advocacy

 


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Advocates relish in the words “not possible”

Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:

We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.

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As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations.  All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.

Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.

Lizzie Sturm, Advocacy in Barnet


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People were soon making friends and having a chat over a mince pie…

In today’s post Laura Thomas of Age Connects Cardiff & the Vale tells us about Carols and mince pies:

As a project that covers Cardiff and the Vale we wanted to plan something informal in Llantwit Major that would bring people together on a cold winter’s morning, and would reach those living in some of our more rural areas.

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We decided on a Christmas themed event with mince pies, drinks and a raffle with donations from the local Co-operative and Filco supermarkets and Sainsbury’s in Cardiff (Age Connects Cardiff & the Vale is currently their charity of the month). This enabled us to offer all refreshments and the raffle prizes for free.

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Information on our work and some prizes for the raffle

We opened the doors for 10.30am and after a short wait the room soon started to fill up. Some came with friends and others were dropped off by a relative or came alone. The atmosphere was upbeat and people were soon making friends and having a chat over a mince pie.

Angela, our independent advocate and Alice the volunteer co-ordinator spent the morning talking to the guests, explaining more about the Cancer Older People and Advocacy Project. We had our leaflets to give out and the OPAAL short film ‘Older People Affected by Cancer’ played in the background. Our volunteers were busy; Linda ran the raffle and Jeff took photos of the day.

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Tenovus choir

We invited Tenovus Cancer Care Choir to come and sing some carols for us. Their singing was amazing and they really helped to get everyone in the Christmas spirit and had everyone singing along. It also gave us an opportunity to talk to those in the choir about the Cancer Older People and Advocacy project and they in turn were able to speak to some guests about the great work provided by Tenovus. All in all it was a great example of how working with another third sector organisation can benefit those that we support.

Laura Thomas, Age Connects Cardiff & the Vale


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OPAAL trainers unleashed in Dorset

Malcolm joined Dorset Macmillan Advocacy as a Peer Advocate early in 2015. With personal experience of cancer and of training people in a commercial environment, we were pleased to welcome him to the team.

When it came to looking for candidates to put forward for the OPAAL/Sanofi Train the Trainer project, Malcolm was a natural choice.

Here Malcolm relates his training and also his first experience of putting it into action when he attended a Macmillan Bitesize event at Dorchester County Hospital in November 2015.Web

“Initially as volunteers we were invited to a training session both to develop our skills in delivery and also to share our experiences of bereavement and cancer at first hand; both what you yourself had experienced and also the effects cancer had had on service users you had encountered whether on their health/wellbeing, employment, relationships and a new attitude to life in general.

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Cancer had figured as a central issue to a particular client that I had been supporting; coming to terms with the treatments and after-effects and how relatives, friends and work colleagues viewed the client pre and post treatment.

The training aimed to prepare volunteers for speaking to health care professionals about both personal and client experiences of cancer and recovery.

The first event I attended as a Trainer was held on the 16th November 2015 at Dorset County Hospital in Dorchester.

The objective was to provide a group of health care staff with first-hand experience of the viewpoints of volunteers supporting advocacy partners.

I shared a story about an advocacy partner who was recovering from cancer and wanted to return to work. We spoke about how I worked with her to understand her requirements and what she would ideally prefer to do, as her work was a physical post. Together we produced a strategy that she was able to present to her employers.

The talk appeared to be well received by the audience, possibly providing them with food for thought.

Feedback gleaned from the event included positive comments about how useful it was to hear from previous patients and also to have heard the advocacy stories direct from the Peer Advocates themselves demonstrating how powerful it is to hear evidence from the people not only who have personal experience of cancer but who have come forward to support others using their own experience and skills.”