“There, there” and “keep your chin up” don’t quite cut it these days

One of our Cancer, Older People and Advocacy programme volunteer coordinators recently wrote the following post:

As a volunteer co-ordinator for one of the Cancer, Older People and Advocacy projects I would like to share a personal story with you today.

In September 2015 my best friend rang me up for what I thought was our usual weekly chat. We have known each other since college and she knew what our family went through when my father passed away over ten years ago as a result of a very aggressive brain tumour. Whilst we were not particularly close at that time I know I could have called on her had I felt the need.  This particular phone call was to tell me that her estranged sister had been rushed into hospital via A & E with what turned out to be a brain tumour.  The family were all in shock and as a very successful recently single woman, it brought home to my friend, the reality of living alone.  I am on hand when she needs me and I have been able to support her as and when she needs. It’s all done at her pace and when she feels the need to pick up the phone or come over to visit.

A couple of days later another close friend, informed me that her aunt had been diagnosed with bowel cancer.  She had been unwell for a few months but not felt the need to go to the doctors as she thought it was just a bit of constipation.  Sadly this story ended quite abruptly just before Christmas when she passed away at home with her family and friends around her.  Funeral arrangements were rushed through as it was all rather sudden, no one had even discussed any of this as they were not expecting it.

The third part of this story (everything comes in threes) is about another very dear friend who had a breast cancer diagnosis about eight years ago.  She is a survivor and has since retired and try as I might I couldn’t get her to join our project – I knew she would make a brilliant advocate!  Her reason was that she had done volunteering all of her life and she simply wanted to enjoy not having to go to work, to enjoy her ever growing family and friends and to do lots of painting. 

We had planned a trip down to South Wales in September and as I hadn’t heard from her I rang the house to check what the plans were.  I spoke to her partner who told me she had been diagnosed with Inflammatory Breast Cancer and the trip was off.  I certainly didn’t argue with that and we agreed that I would visit whenever she felt up to it.  Things have progressed quickly and she has been informed she is Stage 4. In her words “At stage 4 the horse is already out of the stable”.

We have spoken lots on the phone, usually early morning when I know she is awake and usually to laugh at some of the posts on her Facebook page!  For goodness sake, if broccoli and chicken soup were the answer we would be rid of this awful cancer.  “There, there” and “keep your chin up” don’t quite cut it these days.

I suppose the point of sharing this is that everyone’s journey is completely different.  For some it is far too short for anyone to make a huge difference. For others it is a complete shock and they have to take on so much information that they never even knew existed, let alone have to deal with.  Then we have the likes of my friend with Inflammatory Breast Cancer.  I spent the weekend with her and her partner, there was dust where there hadn’t been dust before, clothes drying on the radiators, we prepared and ate dinner in the kitchen (not at the beautifully laid dining table) and we drank low alcohol wine! Unheard of!  We sat in our pyjamas till about 2pm on the Sunday, we drank copious amounts of tea and coffee and we laughed.  There’s no great rush to fulfil bucket lists, no urgency to do the housework, lots of time for family and friends and lots of tissues to wipe away tears of sorrow and tears of laughter. 

I am going to be there for her, on the end of the phone if that’s what she wants, responding to an email if she wants any information and I can jump on the train if she wants company.  This I doubt will be requested often as in her words, she is the matriarch of a huge family (including ex-husbands and new wives) who love her and will do anything they can to make the journey as easy as possible.  Her advocates will be her family and friends, they will make the lists, check calendars, arrange appointments, organise prescription deliveries, hold her hand, ask the questions, investigate recipes, send links to websites, make her laugh and generally do what needs to be done.

Then I am back at work. The people who use our service don’t have what my three friends and their families have.  They are expected to ask their own questions, organise their own diaries and transport, sit alone on wards waiting for chemo, cook their own meals which often they won’t eat and end up throwing away, explain to call centres in faraway places they don’t want to claim PPI…….. They are dealing with all this and more on their own.  So that I suppose, is why I am so passionate about the work we do for older people affected by cancer, I can see the different levels of support that is available and realise that it’s not an equal playing field and what a struggle it can be.

If you will allow me to jump on my soap box, I will mention one more thing that my friend (and my mom) find highly irritating ……………… it’s not a fight, it’s not a battle, you won’t beat it, people who die as a result of cancer haven’t given up, they want to survive as much as the next person.  If only the media would stop using this language which insinuates that the person has given up.  Stop sensationalizing it, not everyone has the same chances, the same amount of time, the same levels of support and the same cancer.  That’s why COPA is a fantastic project and the volunteers who give up their time to help others deserve a massive THANK YOU.

My friend has started a blog about Inflammatory Breast Cancer and I would like to share it with you at some stage, when she is ready to make it public.  This is a very rare form of cancer which doesn’t have the same signs and symptoms of other breast cancers.  If you want to read more she has found some really useful information on these websites:

http://www.webmd.boots.com/breast-cancer/guide/inflammatory-breast-cancer

http://www.ibcresearch.org/

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Our blogging review of 2015

As we start a new year we thought you might like to see some of our Cancer, Older People and Advocacy blogging highlights from 2015.

Here’s an excerpt from our annual blogging report:

The concert hall at the Sydney Opera House holds 2,700 people. Our blog was viewed about 9,900 times in 2015. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Did you know our site had people visit from 111 countries. Isn’t that amazing and a great indicator of the reach of social media:

Click here to see the complete report.

International Volunteer Day is this week

OPAAL‘s Chief Executive Kath Parson has recently spent a lot of time in conversation with some of the fabulous volunteers we have supporting the Cancer, Older People and Advocacy programme.  Since this week sees International Volunteer Day on 5th December we thought in this blog post we’d let our volunteers do the talking:

“Makes a real difference to those we support. It ticks lots of boxes for me, I wanted to continue to use skill, experience & knowledge to help others, to make a positive difference to people’s lives.”

“I want to help people affected by cancer, and am happy to help people through the ‘cancer experience’. For me it’s all about putting something back, I was well cared for and I’m aware that a lot of other people are not so fortunate.”

“Because I believe I can make a real difference, I can help people practically & personally. I have a good idea of what people are going through. I can help them with their concerns or fears for the future. I enjoy being part of a team, and I enjoy the training offered to us all.”

“I feel I can relate to my advocacy partner very well due to my own experiences. I find it useful to have something in common with my partner in addition to the cancer. I am an empathetic person, a good listener and able to support others to express their concerns & worries.”

“Want to help people affected by cancer because I feel there is a gap in services to support people personally and allowing their voice to be heard and express their own feelings, wishes & concerns. Someone to ‘be there for them’. Lonely experience for Older People Affected by Cancer.”

“I enjoy being with Cancer, Older People and Advocacy staff; like helping other people. It’s a fantastic opportunity to give something back, my Grandad was lucky, he had me. Too many people have no one to help them.”

“I want to be able to support someone in need of support at a difficult time in their lives. I have the right skills & attitude to offer this support. In doing so the reward for me will be to feel I am available to support them when they need someone.”

 “I have a disabled son and husband at home and I regard my volunteering time as my time, a time for me to give something back to support others who have no one else to help them. In return I get out of the house, meet some amazing people and am able to work closely with my fellow volunteers as part of a team. We also socialise a lot so this helps me to keep in touch with my local community. It saves me from becoming isolated due to my carer’s role.”

Many, many thanks to our volunteers who contributed these quotes.

If you are an older person who has been affected by cancer, are in one of our delivery areas and are interested in becoming a peer volunteer advocate or would like to get involved in another way, why not get in touch?

Marie McWilliams, OPAAL

“..supporting older people with cancer across a spectrum of issues..”

In this post Lizzie Sturm, Chief Executive of Advocacy in Barnet, explains what it has been like becoming involved in the Cancer, Older People and Advocacy Programme funded regionally by Macmillan Cancer Support:

Advocacy in Barnet has just reached its’ sixth month milestone; becoming a Macmillan partner in May this year. As a team we have been actively and widely promoting the project.

Volunteers Sarah Humphreys and Nicholas Johnson carrying out mock interviews

Volunteers Janet Maddison and Ian Lanman

 

Having previously heard of the range of challenges faced by the Cancer, Older People and Advocacy projects at the Cancer, Older People and Advocacy National Board Meetings we were prepared for a myriad of scenarios. Happily, I can instead say the project has been building smoothly in terms of delivery and awareness raising. 8 volunteers have been recruited, trained and actively providing advocacy. As a Macmillan partner organisation, we are privileged to be able to take advantage of the training programme they run with 3 of the new volunteers attending Macmillan’s Cancer Awareness Face to Face training.

 

 

Our soft launch held last month was successful with guest speakers from Barnet Macmillan Citizens Advice project, Cancer Research UK and Macmillan.

We have held two Local Cancer Champions Board meetings comprising 11 members including local Macmillan services, Macmillan GP lead, North London Hospice, Barnet CCG, Barnet Macmillan Citizens Advice project and a volunteer advocate.

 

We have to date received 8 requests through a range of routes and are supporting older people with cancer across a spectrum of issues including financial, social care, practical support, housing and moving into care. In one situation, advocates are supporting a couple both affected by cancer and in their late 60s, going through the most difficult period both emotionally and physically. The Macmillan Cancer Support Volunteer Advocate is supporting the husband who also has dementia in settling-in in the nursing home and liaising with the nursing home and sheltered accommodation regarding moving his belongings; the Macmillan Paid Advocate is supporting the wife with terminal cancer with her End of Life Care wishes and her move from the hospital to the nursing home where the husband has moved. This couple has no relatives and friends to support them and cases like this highlight the importance of Barnet Macmillan Cancer Advocacy services.

Cyril Dainow with an Older Person Affected by Cancer from Macmillan Engagement Event

The challenge in this project has unexpectedly been the need to re-recruit for the volunteer co-ordinator role but with interim cover for this position, there has been no disruption to this fantastic service.

Lizzie Sturm, Advocacy in Barnet

Our first six months…

Deborah McGarrity, Age UK Northumberland’s advocate tells us about a busy first six months in their new Cancer, Older People and Advocacy Project:

Age UK Northumberland has just passed the 6 month milestone; we joined the programme in April this year. As a team we have been actively promoting the project and the excellent service it provides for people affected by cancer. Here are a few of our highlights:

Just last month we joined Macmillan on Beryl the Macmillan bus when she came to Newcastle and Cramlington. This was an excellent opportunity to work with the Macmillan team and also to promote the project, over 300 people visited the bus when it was parked in Northumberland Street, Newcastle.

Beryl, the Macmillan Bus

We have attended numerous ‘Winter Warmer’ events throughout Northumberland, spoken to staff in oncology day units, social services, CAB, U3A, at a GP Conference, Nurse Forums, Carers Northumberland, care homes, hospices, cancer support groups, had a full page article in the local press,  the list goes on. We have recruited and trained some fantastic volunteers.

Slowly the service is beginning to get known throughout the vast county that is Northumberland and we are trying to be creative in how we promote the service, it can be hard and referrals are slow, but the value of the project keeps us going and enthusiastic! At the moment we are trying to arrange an official ‘launch’ so watch this space..

Deborah McGarrity, Age UK Northumberland

It’s a marathon, not a sprint…

I’ve written before for the blog about how last Christmas Eve I suddenly found myself an older person affected by cancer when my 23 year old son was diagnosed with advanced cancer.

As the time has passed and he has moved from one treatment regime to the next and to the next I’ve come more and more to realise that this cancer lark isn’t something that gets dealt with quickly and passes out of your life. It’s no sprint. It’s an everyday reality that’s with you from the minute you wake up in the morning to the minute you (try to) sleep at night, day after day, month after month. Soon, for us it’ll be a year. A year as a family we’d like to forget.

In that time we’ve come across so many fabulous, dedicated NHS staff. They work 12 hour shifts without batting an eye, they look after you body and soul, they don’t forget that the patient’s family are as traumatised as the patient. We’ve come to know than the NHS’s best resource is its people.

As this marathon goes on for us I realise more and more that we’re not in it by ourselves. The support we have from family and friends can be humbling at times. They go well out of their way to do something because it may help. The little things, like taking the washing away and bringing it back clean and ironed, when you’re 180 miles from home, that’s a big help. Things like travelling 240 miles each way to visit for an hour because you’ve heard the news, those make you realise how good people intrinsically are.

Whilst all of this is going on I constantly remind myself of how lucky we are. I’ve always been a glass half full kind of person, trying to look on the bright side. This whole cancer experience so far has been horrendous but at the same time it has been inspirational. I have a fabulous relationship with my son with whom I’ve spent countless hours chatting at all times of the day and night; I look forward to seeing my daughter and my husband, the time I spend with them is precious. Being so far away from home for long spells, I look forward with so much anticipation to seeing them walk through the door.

I appreciate the fact that I have a fabulous support network around me. I also know that I’ve been acting as my son’s advocate, ensuring that when he has needed it I’ve been putting his point across and explained things to him that he may not have taken in the first or even the second time he has been told because of the effects of his treatment. Our trusty notebook is full of notes taken at every consultation. It gets filled with the questions he wants to ask, then the answers he receives so we can always refer back.

The older people affected by cancer that we support in our advocacy work may not be so lucky. Many don’t have close family and friends and even those who do may choose not to share their feelings and concerns with those they love most. Some may have family but they may be many miles away. All of that makes me more convinced than ever that the work we do in recruiting, training and supporting older people affected by cancer to provide peer advocacy for other older people like themselves is vital. The pressures on everyday life brought on by a cancer diagnosis are immense and every day our advocates provide support that makes a real and tangible difference. Long may it continue and develop.

Marie McWilliams, OPAAL National Development Officer

Volunteer peer advocates on film

We think that the second of our Older People’s Cancer Voices films really well captures the passion, experience and knowledge of our volunteer peer advocates, as well as giving a flavour of what to expect when becoming a volunteer yourself.

We recently had two guest blog posts on the Big Lottery Fund blog featuring volunteers talking about their motivations for getting involved in the Cancer, Older People and Advocacy programme, and how they themselves benefit from their volunteering role.

We wanted to bring to life this unique volunteering role, and OPAAL and our project partners could not deliver the Cancer, Older People and Advocacy programme without the support and dedication of our volunteers, so this films is about highlighting and celebrating all that they do:

A big thanks to all of our volunteers, and we hope to welcome new older people affected by cancer on board, to find out if we have a service in your area see the About Us page of this blog.

We’ll be back tomorrow with our film aimed at health professionals.

Ang Broadbridge, OPAAL

Amplifying Older People’s Cancer Voices through film

Do you want to see our Cancer, Older People and Advocacy (COPA) programme brought to life in film? Then stay with us all this week to find out more!

Our Older People’s Cancer Voices project is funded by Department of Health to September 2017. This project is about amplifying older people’s cancer voices into a wide range of settings to bring to life the effectiveness of independent advocacy support for older people affected by cancer.

Margaret and Vivian

A key output of the project is a set of films featuring older people affected by cancer, together with their volunteer peer advocates, and health and care professionals and commissioners, talking about the difference advocacy makes.

Working with Cancer, Older People and Advocacy project partners Beth Johnson Foundation, I-CANN, Help and Care and Dorset Advocacy we are delighted to see the release of our year one films.

Throughout spring and summer 2015 these project partners worked alongside OPAAL and our filmmaker Meirion Harries of Webenable to bring together older people affected by cancer who wanted to use their knowledge and experience to develop better services for their peers. In addition to securing a fantastic team of volunteers and advocacy partners who were willing to go in front of the camera our project partners themselves participated. They were able to secure a wide range of health and care professionals and commissioners whose experiences will support and encourage their own professional peers to see the value of advocacy for older people affected by cancer.

As project partner Janet Cullingford from I-CANN reflected in a recent blog post:

 Everyone who took part commented on how much they had enjoyed being a part of it, and were made to feel at ease by both the interviewer and Meirion. It also provided fascinating insights into the way that films are edited, cuts used, even the importance of lighting.

OPAAL’s Ang Broadbridge reflected on her experience of the filming process:

This series of films forms part of a package of capacity building support that cancer, older people and advocacy project partners can use to promote and develop their services. Each film has a call to action; for example to encourage new volunteers, to support health and care professionals to make referrals, and we are excited about showcasing these films and getting these key messages heard. I’m hugely grateful to the project partners and participants for their support in making these films a reality, I want to say a big thank you for all your support!

Thanks also to Meirion who has captured so well the experiences of older people affected by cancer, the motivation, commitment and passion of our volunteer peer advocates, and the understanding of advocacy that the professionals we work alongside have developed. Meirion’s own understanding of advocacy and sensitive approach to storytelling has helped us to really capture and amplify the voices of older people affected by cancer.

We’ll be releasing a film each day this week on the blog, starting with an introduction to the Cancer, Older People and Advocacy programme tomorrow, make sure you visit us again to be the first to see it.

Ang Broadbridge, OPAAL

A visit to Willowbrook Hospice

Pat McCarthy, manager of the Cancer, Older People and Advocacy service at Knowsley Pensioners Advocacy & Information Service (KPAIS) tells us about a recent visit to Willowbrook Hospice:

As part of our delivery of the Cancer, Older People and Advocacy project we have worked hard to get to know other services in our area and to develop some great working links.

As part of this work we were invited to visit Willowbrook Hospice.  If you have a look at their website you can learn a lot more about the fabulous work that they do http://www.willowbrook.org.uk/

Myself and Val, who is our paid advocate, were able to attend this visit and it was so helpful to have an understanding of this great facility available in our area.  We met with Jane Finnerty who is the outreach services manager and we had a tour from Margaret McConaghy the inpatient services manager.

The day we attended, an outreach session was underway with many people attending to access clinics, to take advantage of therapies and to socialise.  There was lots of noise and laughter and we could see what a valuable space this is for people to be able to share their thoughts.

Margaret showed us around all of the hospice, a really beautiful with an overwhelming sense of comfort and peace.  Val and I were able to share our information with leaflets and copies of Every Step of the Way to be shared with staff and patients.

In the future we will also be attending their educational team meetings to give further information of our advocacy provision and Jane now has a seat on our local cancer champions board, so it would seem that a lasting relationship has been built.

Pat McCarthy, KPAIS

 

Meanderings of a Male Advocacy volunteer

In the second of two blogs from Dorset Macmillan Advocacy, produced for and published by BIG Lottery Fund last week, we hear from Bob Smith, a volunteer cancer advocate.

A recent report funded by the Big Lottery Fund revealed that men over 50 have a tendency to volunteer less than women of the same age. I think there are a number of reasons for this; for example, one is the fact that more men than women over the age of 50 tend to still be working, and therefore have less time available than their female counterparts. Also, many within this age group were brought up in an era when volunteering was seen as more of a woman’s domain; thank heavens this is no longer the case!

Volunteering can be so rewarding for those who give their time freely. We all have experiences, talents, and skills that can be used for the benefit of others. None of us know when we may need the help of others and it’s great to play our part whilst we can.

I have generally tried to help others if I have the opportunity but never more so than since I contracted cancer for the first time in 2007. By 2012 I had had the illness three times, plus a stem cell transplant. I was in remission again and looking for somewhere that I could really make a difference. I heard that a new project providing one-to-one advocacy support for older people affected by cancer was looking for recruits  so I applied along with my wife, Maddy, and we were both accepted.

Being a volunteer advocate enables me to use my experiences to help others struggling with their cancer journey. A diagnosis is devastating to the patient, their loved ones, and their friends. Any of these people might need help and support. Having someone who is supportive, impartial, and empathetic (not just sympathetic) can be invaluable, and this can be especially relevant to the older person.

Advocacy doesn’t just benefit the person affected by cancer; I have learnt so much about how to support people with so many different needs. Each of my advocacy partners has been different and taught me so much. They have ranged from very positive to depressed and helpless to very capable, but all in need of someone to confide in.

Being a male advocate will obviously involve supporting men and women partners. However, certain types of cancer are very personal to a man (as are some to a woman). Having male volunteers also adds a different dimension to the advocacy;. a man affected by cancer might- open up more to another man as they will have had similar life experiences and views. Some say they can treat you more as ‘an impartial brother’.

I would very much recommend that other men who have had experience of cancer volunteer as advocates. The emotional rewards are enormous and it’s a real blessing to be able to help others using the first-hand knowledge you have. I have every intention to carry on as an advocate and am finding new ways to help cancer patients in other ways as well. Cancer advocacy is the most important volunteer role I’ve had to date.

Dorset Macmillan Advocacy are parallel partners in Older People’s Advocacy Alliance (OPAAL)’s Cancer, Older People and Advocacy project which is funded through the Big Lottery Fund’s Silver Dreams programme.