My cancer journey

Our thanks to Rod, who shares his story with us below:

Hello my name is Rod and I have recovered from cancer. I was diagnosed with testicular cancer. It was a bit of a surprise but when my wife told me that my left testicle felt like a walnut I thought I’d better get this checked out.

I had surgery to remove the testicle, a very quick operation by the way, and it only took a day before I was walking around again. What I found most difficult to deal with was waiting to find out, I found that more difficult than the treatment. I eventually went to see the consultant and he informed me that the testicle was cancerous and that I would have to undergo a course of treatment. The treatment made me feel sick all of the time and after the first session I got back home and threw up! They prescribed me a course of anti sickness tablets but they made it worse! In all honesty I wasn’t scared about having cancer, my friends were more worried than I was. Don’t get me wrong I wasn’t happy about having cancer, but I couldn’t change it, I just had to live with it.

Just because you have cancer doesn’t mean that how you live your life has to end. Friends tried to wrap me up in cotton wool and protect me. I was a bit physically limited in what I could do (feeling weak all the time) but I wouldn’t let it stop me from going out and enjoying myself.

The consultant said that is was possible that the cancer could spread through my lymphatic system so the course of treatment was shortish but aggressive. What surprised me the most was still being able to have a physical relationship with my wife, which resulted in the birth of our twins, one of each, I was dead chuffed.

A while later I thought something was wrong again, as I was having constant diarrhoea. Consequently I had a endoscopy, which found nothing, and then a colonoscopy, where various polyps were removed. When I next saw the consultant he informed me that they were in the early stages of change. This time I was a bit worried, as this is what my father had died from. As it turns out I was fortunate, as this was caught early and very recently I received the all clear.

 

Rod

My volunteering

I am currently unemployed and signed off until April 2017. As a consequence I have plenty of time to spare. I was looking through the doit.org website and came across the peer advocate position, with Sefton Pensioners Advocacy. Certainly when my father was diagnosed with cancer there seemed little or no help or support, which really hadn’t changed that much when I was diagnosed.  I felt that through my own cancer journey and other members of my family I had something to offer in terms of support and guidance.

I have had two clients so far and they have very different stories. Although they are my clients I prefer to just think of them as people that I am supporting. They have both been unique, facing different issues and challenges. One client has already recovered from one form of cancer, only to find out that she has another. There are other complications as well, mostly to do with chronic pain, which she is having treatment for. The main issue this lady has is with mobility, as she had no blue badge she found it difficult to get around as she was limited to where she could park. I successfully applied for her blue badge, which has completely changed things for her, she can now drive to the local village and park outside the supermarket to do her shopping. She is really, really pleased with this as it has given her a greater sense of freedom. Her details were forwarded to the DWP and now she and her husband both receive attendance allowance. Now they can afford to have the house cleaned and garden maintained, which is very important to them both.

My second client has been completely different. He was diagnosed with lung cancer, which had spread to his brain and his diagnosis was terminal. His eyesight was also failing. His behaviour was challenging at times but a lot of this was sheer and utter frustration at not being able to express himself fully. I first visited him in hospital, with a colleague, and his behaviour was challenging. To be fair he had been in hospital for the best part of a month. Eventually he was discharged and he returned home and I was able to support him in terms of getting there, making sure a hospital bed was installed (he had been sleeping on the floor) and ensuring food was delivered (thank you Foodbank). However this only lasted one night and he was then readmitted to hospital. He was then reassessed and admitted to a nursing home. He was much happier with this as he had the space of the whole lower ground floor and a greater sense of freedom. I was able to support him in terms of getting more clothes and taking him to his property, to help him sort through his important documents and things.

He was initially worried about his funeral and also getting in contact with his estranged daughter. On investigation it became apparent that he already had a funeral plan. I helped him to make contact with his daughter again and also arranged for him to have regular communion. During the days before his death he deteriorated drastically, not communicating at all. As he was on morphine every three hours this was hardly surprising. Although I knew he had terminal cancer I still found it a shock when his nursing home informed me that he had died at 6:30am that morning. There were things that I still wanted to guide him with. I have an immense feeling of frustration that I was not able to help as much as I could, but sometimes things just work out that way. The final thing I could do for him was to make sure his daughter was aware of his final wishes and thus I made sure to communicate these to her.

I attended his funeral to pay my last respects.

Advocacy for me so far has been, challenging, frustrating but ultimately rewarding and will continue to be so.

Rod, Sefton Pensioners’ Advocacy Centre

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‘A horrendous week but my first experience of advocacy was the most precious gift I could have been given’

About Rosie

My personal situation is in 2013 I had a lower left lung removal.  A follow up scan was booked for the 18/10/14 followed by an appointment to see my GP on the 28^th October this year. I felt relatively happy but apprehensive. Sometimes being a Retired Nurse is both a blessing and a curse.

 

My advocacy experience

Linda my newly allocated advocate agreed to meet me on the 5^th November for our first face to face meeting.

I felt that I could finally let go of being alone, totally in control and a supporter of family and friends to concentrate on me. Advocacy provided someone there to support me to help me be logical, nothing feels stable any more.

On 27^th October my Consultants Secretary called me to tell me she wanted to see me on the 30^th October. I questioned the need for the appointment but the response was “She wants to see you urgently”.

I was horrified, I needed to call Linda my new advocate but in my panic I couldn’t find her number. Thankfully I found the number for Oxfordshire Advocacy (OA) and explained my situation to Julie. OA sprang in to action and arranged for Linda to come with me to my GP’s appointment. Unfortunately Linda could not make the Consultant’s appointment so OA found me a second advocate.

GP’s Appointment

My GP is wonderful but with Linda by my side to support me, take notes and ask questions that I may forget I felt fairly confident that is until…

There was a new finding “a suspicious node in the right middle lobe”. I immediately went into an out of body experience where you just can’t get back in to you.

Linda could see something was happening and asked questions of my GP, writing everything down so we could have a discussion later.

Linda (L) and Rosie (R)

 Linda and I then planned the next few days and what that meant for me.

Keith my second advocate who was coming with me to the consultants’ appointment wanted me to provide him with a briefing as were unable to manage to meet beforehand.

Appointment with my Consultant

The 27^th dawned and Keith (my advocate) and I attended the meeting with my consultant together. Her first words to me were “It’s alright it is good news!!!” I should have felt happy and relieved but I was shell shocked, as I had been when they told me I had cancer, and angry for the anguish I had caused my family and friends.

How advocacy benefited me

Keith had written down all the facts from the meeting with the consultant, listening when perhaps my thoughts may have wandered.

Linda and Keith provided reassuring support, without which I am sure I would have gone insane whilst waiting.

What next

I have a scan in 6 months’ time so focus on one day at a time. I am not alone anymore; I can say how I truly feel. There is no need to choose my words nor have guilt at asking and receiving my advocacy support.

I continue to champion the Cancer, Older People and Advocacy project in Oxfordshire so no one has to face cancer alone.

(Rosie – OA Advocacy Client and Cancer Champion)

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Macmillan Cancer Support believes that no one should face cancer alone and nor should cancer trigger social isolation and loneliness

‘Alone in Dorset’ was the theme of this year’s county-wide conference hosted by Dorset Age Partnership, Dorset Fiftyplus Forums and Dorset POPP (Partnership for older people programme).

The day was a mixture of presentations and small group discussion. We heard case studies of the work being done by agencies such as Purbeck Good Neighbours to tackle social isolation and loneliness. Debbie Ward, Chief Executive of Dorset County Council, stressed the need to intervene early and prevent people from becoming lonely.

I realised that preventing one person’s isolation can have greater unforeseen positive consequences and gave the example to attendees of how a Dorset Macmillan Advocacy volunteer advocate enabled a person to regain confidence after their cancer treatment so that they did not become socially isolated but instead returned to driving and resumed taking three older neighbours out every week.

Our discussion group included one of the POPP Board members and Andrew Archibald, Head of Adult Services for Dorset. We considered the factors that contribute to loneliness and social isolation, the role of Public Health and where responsibility lies; how much responsibility rests with the individual themselves not to become isolated and how many factors may be beyond a person’s control such as simply outliving peers, partners and even children as well as illness and disability.

Andrew Archibald, Head of Adult Services at Dorset CC

I was reminded of the original call to action of the Campaign to End Loneliness entitled Safeguarding the Convoy, a title based on ‘Jenny de Jong Gierveld’s concept of one’s personal ‘convoy’: the assembling of family, friends, social contacts, work, passions and pastimes, resources and assets which you take forward through life, and which secures your confidence and enables you to lead the life you choose to the full. This convoy travels with us through our lives, but is prey to assaults and losses along the way, especially in later life.’

Paul French a retired GP who is now on Dorset CCG’s Governing Body as locality chair for East Bournemouth and the clinical lead for Mental Health and Dementia regretted that GPs cannot do more. He described true social isolation as a chronic condition which could lead to persistent loneliness.  He felt that social and health care commissioners should work together to support those who are socially isolated through initiatives such as Better Together.  Above all he said that GPs themselves need to be aware of the issues and work with local authorities and the voluntary sector to provide support using Social Prescribing.

Dorset Macmillan Advocacy staff team and volunteers continue to work on raising awareness of our service with GP surgeries across the county.  We aim to prevent a cancer diagnosis from becoming the trigger for social isolation and loneliness and to reduce isolation and loneliness for those already affected.

Kathleen Gillett, Dorset Macmillan Advocacy