It’s a lottery, even in the same postcode!

Today, with kind permission, we reproduce a post written by Chris Lewis a good friend of our Cancer, Older People and Advocacy work and first published on his own blog recently:

 

The work that I do in cancer support has changed dramatically over the years, and I have had to adjust with the increase of demand on my time. My speaking engagements and charity take a bulk of my time now, with writing filling any gaps. But one thing I was determined to continue with is my monthly prostate group facilitation, which I have been doing now for 8 years. This is done at my local cancer centre and we have a group of approximately 30, with new members every month. We have professionals from the local community as guest speakers and everyone shares their experiences to try and improve the offer for patients coming into the system now.Our members come from a very local area and in general visit the same few GPs and mainly three hospitals for their treatment.

But what continually shocks me is the mixed messages being brought back to the group. There is a huge amount of experience amongst our members which is why the group is busy. Most have learned to be proactive with their own care because they have to be!  The guys are a great cross section of prostate treatment with some starting, and others dealing with the side effects of their treatment. This particular cancer has many different options of treatment with different outcomes of course. All have different side effects, and for most people, making a choice is one of the most difficult things they will have to do.

Of course, everyone is affected differently, even when two people have the same disease and treatment which we all know. Treatment is changing rapidly now and even in my time of working with the group, surgery is now being done by robotics, and radiotherapy has become much better targeted to leave less peripheral nerve damage. This is progress of course, along with the more tolerated drugs etc, but why am I not shouting from the roof tops? Simply because our communication is still as poor as ever. With this particular cancer, the treatment decisions can be complex, but it is after treatment where the complications can really begin. Some of the basics of life for men, being embarrassingly difficult. Unable to control accurately when you need to go to the toilet, and wearing nappies, in case of accidents. Erectile dysfunction being also very common for many, after treatment. Having to take hormone therapy for several years, changing your physical appearance, getting regular hot sweats and growing breasts. You can’t begin to imagine those sort of changes can you?

However there are many things around now that can improve life after prostate cancer, but it certainly is a lottery whether you are told about them or not! Many of them are available on the N.H.S, but it seems very few are actually informed what is available. A quick example would be the pads that men wear. People spend a lot in supermarkets buying their own but apparently there is service that delivers them free of charge. Some people know about it and others don’t. The same applies for problem with erectile dysfunction. Tablets, machines, pumps and under the skin valves are all available, but so many people are just not aware much of this exists. It is so strange listening to the group sharing their own experiences. Many looking on in amazement as one mentions a service that nobody else was aware of. Why is this still happening in this day and age?

My initial thought was cost, as that is always one of the first things mentioned, but maybe that is the cynic in me? How can it be that people living in the same area attending few hospitals get very contrasting information? Not being told some of the key elements of what might actually improve their physical and emotional wellbeing. This really shows why it is important for patients to talk to each other and the value of support groups whether online or physical. I have always been proactive with my own treatment and encourage others to be the same. But let’s be honest at the time you are feeling most vulnerable it can be difficult to be ‘pushy.’

We are doing some wonderful things now for people affected by prostate cancer, but what I have learned is that like with most other cancers, it’s the psychological and emotional issues that follow, is where the biggest problems are.Why oh why is it still so ‘hit and miss’ that people get the treatment they require? Whether you have a particular urological nurse or not? If you see a certain Consultant or you don’t?

Communication is still the major obstacle to helping these people. Despite the Internet, and information from many different charities and the health service, it is just not being delivered in the right way. Leaving people to their own devices after they have had traumatic treatment will not help them with their quality of life. Surely after they have been treated, they deserve the best opportunity of returning to as normal a life as can be achieved? It is no longer good enough to think the job has been completed once you leave the hospital. The after effects of many of these treatments can continue for years after, and sometimes for life. We must do more to ensure that each case is looked at individually, how that person lived their life before and what ambitions they may have for after.

In my opinion we must make every effort to improve the quality of life after treatment for people affected by cancer. Not having the services available is one thing but for them to exist and people who need them not to know about them is a disgrace. My experience has shown me that there are still too many ‘cooks’ without real effective collaboration. It can no longer be a matter of luck whether we find what we need!!

This video will help explain some of the issues that people can face.

As always I have share my thoughts and experiences above, and please feel free to share your below. It’s your help that gives me the information I need to ensure positive change can happen.

Chris Lewis: Twitter @christheeagle1 

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

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

“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

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.

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

Having finished her chemo Nina accepted my offer to take her out for coffee and a good chat

This Volunteers Week we’re look back and celebrating some of our amazing peer volunteer advocates. Today Marion of Dorset Macmillan Advocacy tells us about supporting Nina:

My first impression of Nina was of a rather shy person and not feeling very confident. Her diagnosis had rather ‘knocked her for six’. I was matched with Nina because we are of a similar age, and I would like to think it was also because the coordinator felt I could help give Nina the support she needed to face the future with confidence.

I was able to accompany Nina to her 6-week follow-up from her mastectomy. She was given the news that she’d require further chemotherapy and possibly radiotherapy. This was devastating news for her because she knew it meant she would lose her hair and her immediate reaction on receiving this news was ‘You’ve taken my breast and now you’re going to take my hair too’.

There were a few tears but the Consultant was very patient and understanding and after re-explaining the programme of planned treatment he left us in the care of a senior nurse who was equally understanding.

Marion

I told Nina I’d also be there to support her through her treatment. Nina was aware of how her future treatment would affect her because she had had a course of chemotherapy prior to her admission for surgery.

On our journey home from hospital we chatted about the future and her treatment and by the time we got home she’d become a little more philosophical about things. I kept in touch with Nina in the following days.

When she received her first appointment for chemotherapy I offered to take her and wait until she had finished her treatment to bring her home again but Nina was quite adamant that she wanted to go it alone so I withdrew quietly but kept in touch making sure all was well. I know that Nina has had the support of her family and friends, has used public transport to get about and has even been driving her car.

Having finished her chemo Nina accepted my offer to take her out for coffee and good chat. Since then she has started her course of radiotherapy so we’ve yet to fulfil her wish to go shopping.

I phoned Nina recently to get an update on her progress and to arrange an outing. She told me she has now finished her course of radiotherapy, she’s feeling well, is still a little sore from the treatment but has accepted this and feels sure it will get easier as time passes. She’s recently been out on the bus and enjoyed being out for the day on her own. This shows that she really has become a very confident and self-sufficient lady. I’ve arranged to pick Nina up and plan to spend a happy day with her listening, shopping and entertaining her. I feel she deserves it after such a traumatic cancer experience, an experience that came as a bolt from the blue.

Marion’s view and Nina’s story can be found along with other inspiring advocacy stories in our publication Every Step of the Way which can be accessed here

 

 

 

Marie McWilliams, OPAAL

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.’

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

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)

“everyone my client met treated her with dignity and respect”

Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:

I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.

Susan

The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.    

I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.

By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2^nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.

My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.

I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.  

Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)

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.

 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. 

Most 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

People Affected by Cancer: Not Alone

“What’s that tardis-like box doing in Churchill Square?” That’s what shoppers in Brighton were asking on the last Friday in August.

The isolation box, a touring art installation by Macmillan, was raising awareness that ‘cancer can be the loneliest place’.

Members of the public were invited to try the isolation box and experience how it feels to be alone in a crowd. Once inside participants could listen to 2 real-life stories told by local people, John and Sarah, about their experiences of having cancer. John, 64, from Hove talked about how lonely his diagnosis made him feel. A few passers-by shared their own stories.

From the outside you could see into the box, but once inside I could see only blurry figures. Amidst the buzz of the busy shopping centre, with people all around me, I felt cut off from the crowd. For those few minutes, despite being aware of people and voices surrounding me, there was a barrier between me and the rest of the world.

The isolation box

People affected by cancer can feel incredibly lonely even when they have friends and family. Research has shown the devastating impact of loneliness, causing people to skip meals, attend vital appointments alone or even refuse treatment. Over 60% of patients go for surgery and radiotherapy appointments alone. Many said this was because they didn’t want to burden friends or family, or the person they wanted to go with them was not available. Some people had nobody to ask.

So what support is there for isolated cancer patients in Brighton? The Macmillan Impetus Cancer Advocacy Service works with some of the most isolated people affected by cancer in Brighton & Hove: older people, people with mental health problems, people with learning disabilities and people with autism spectrum conditions.

They may have limited support networks, or find it less easy to access the information or support they need.

For someone affected by cancer there can be lots of information to take in and decisions to make. Navigating the complexity of health and social care systems can be frustrating and difficult.

Cancer is a life-changing experience. It can generate anxiety and stress and people may lose confidence. This may limit their ability to deal with life in the same way as they did before becoming ill.

Sam Bond

Having someone to help can make all the difference. Advocates act for the person they are supporting. They can visit the person at home or another setting. Advocates have time to listen and find out what is important to the individual. They can help people sort out many of the issues that arise when someone is affected by cancer, as well as general-life difficulties which the person may find it harder to deal with. Advocates can find out about support and activities in the person’s own community.

Cancer Advocacy support aims to reduce isolation, link people up with the support they need, and ensure they are able to make informed choices and express their wishes.  This benefits the individual and everyone involved in their care.

Reach out to someone affected by cancer who may be isolated and lonely. If you know someone who would like the support of one of our cancer advocates, contact The Macmillan Impetus Cancer Advocacy Service on:

01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Brighton & Hove Impetus

Susan tells J’s story

I am a volunteer advocate from Oxfordshire Advocacy and a Cancer, Older People and Advocacy volunteer.

I first met J at the Churchill Hospital in Oxford prior to her first consultation with the surgeon following a diagnosis of cancer of the uterus (womb). J was a delightful 83-year-old lady, tall, elegant wearing red lipstick and bright red nail varnish on her fingers and toes, and she reminded me of an elderly Meryl Streep. J was a widow, had no immediate family and her next-of-kin was a disabled sister in Birmingham, she did have some very supportive young friends who had young children but who were unable to attend consultations during the day.

The first time we met was at the entrance to the hospital and we went to the gynae outpatients department where a very attractive male doctor (J’s words not mine) told her that the plan was for a hysterectomy within the next few weeks. A Specialist Nurse was in attendance and gave J information about endometrial cancer and treatment. J was not surprised about the plan for  surgery, but was determined that she was not going to have chemotherapy as a friend of hers had died following chemotherapy for liver cancer, although she was willing to have radiotherapy. My role at that consultation was to support J in getting across to the medical team that she did not wish to have chemotherapy.

After each hospital visit we went for a drink at the hospital café, which gave J an opportunity to talk about the consultation and any concerns she had.

On one occasion we visited the Maggie’s centre where we spoke to the volunteer staff and received information about Attendance Allowance from the Benefits Advisor.

I visited J at home several times to go through the information that she had been given regarding surgery and treatment options and to help her complete the benefit forms. I supported J at her preoperative assessment and at her consultation after her keyhole hysterectomy. I supported J in discussing her wishes at her appointment with the oncologist.  By the second visit to the oncologist the results of the CT scan were known which indicated that there had been further spread, and the plan was for four sessions of palliative radiotherapy. The specialist nurse spoke to J about the support available from the local hospice.  However J was very upset as she felt that hospice intervention meant that she was dying. She continued to deteriorate and she asked me to attend for moral support when the specialist nurse from the hospice visited her at home.  This meeting went very well and the specialist nurse was able to give J advice on diet and pain management.

I went with J for her first two radiotherapy sessions.  She telephoned me at the weekend after the first radiotherapy session, extremely distressed and weak saying that she was unable to eat or drink or walk. I visited her at home 40 miles away and supported her to get something to eat and drink and encourage her to take her analgesia.

J never did have any more radiotherapy. I went away and on my return I contacted her and she sounded very frail .  I went to visit the following day but when I arrived a neighbour informed me that J had fallen that morning and had been taken into the local A&E department. I visited her there where she was in a lot of pain, frail but cheerful and glad to see me. However over the next week or so her condition deteriorated and I visited her in one of the inpatient wards at the local hospital (she was too unwell to be transferred to the hospice). Unfortunately J had had a stroke and was unresponsive, she looked very comfortable lying in bed with radio 3 playing in the background (J was a lover of classical music and a pianist) and I was still reminded of Meryl Streep. She sadly died the following day.

Susan

I was so glad to have met J as part of the Cancer Older People and Advocacy project and to be able to help her through her cancer experience. As she had no friends and family nearby I was able to offer her support, and help her navigate her way through the system and help her ask those often difficult questions and understand the response. I was a shoulder to cry on, someone to give her a hug when she needed it, an arm to guide her through the hospital corridors and in the end someone to push her in a wheelchair to her last radiotherapy appointment. My involvement with J was a real privilege and J was extremely complimentary about the assistance the Cancer Older People and Advocacy project had offered her.

Susan Mackie, Volunteer Advocate, Oxfordshire Advocacy

Pat Wallis – My Cancer Journey and How It Led Me to Volunteer For SPAC

I was diagnosed with breast cancer 9 years ago and underwent lumpectomy, chemotherapy and radiotherapy.

I cannot fault the treatment I received from Southport Hospital, in association with Clatterbridge. The breast cancer specialist nurses were wonderful and very supportive and informative. However the health professionals can only give you so much help, you need the support off others to help you cope.

Entering the world of cancer and going through the treatment pathway you experience a roller coaster ride of emotions. Initially there is the shock of diagnosis, with questions such as how advanced is it? Has it spread? These questions can take time to answer as there are tests to undergo. It is hard to explain to someone how stressful it is waiting for the results and to find out what treatment you will receive. You certainly need the help of someone to go through this with you. At appointments you may hear what is said but not take it in and thus having someone else there, when you see the cancer specialist, can make a significant difference. Once you know the treatment pathway you are going to receive there are many other concerns. If you are going to have chemotherapy you feel very apprehensive. Much of what you hear about chemotherapy tells you how awful it is. You wonder how ill will I feel, am I going to be very sick, will I be able to go out, what will it be like without my hair, will I suit my wig.

Hospitals can be very daunting places, even if you are confident and not afraid. I remember waiting in a cubicle with an unflattering gown on wondering if I had been forgotten. Once you are on treatment you may still have questions to ask the cancer specialist. It helped me to make a list and have someone accompany me to the specialist or my treatment.

Pat Wallis

If you are still working there could be financial concerns. You may be off work a long time and may need support in identifying your rights re sick pay and any benefit entitlement. I was fortunate in that the company I worked for paid me full pay throughout but this is not the case for everyone.

When you are on treatment you feel secure, as you are seeing health professionals regularly. However once you have finished treatment you can feel as though you are alone and have to start adapting to life again. However you still have the stress of check-ups and learning to live as a cancer survivor, which can be extremely frightening. Another hurdle you may have to overcome, if you are still working, is your phased back to work and you may need help to explain things to your employer.

My own experience of undergoing cancer treatment was very positive and as I have stated I cannot fault the treatment I received. I tolerated chemotherapy well and it was not an awful experience for me, I only missed going out for one day. When I lost my hair there were some benefits to wearing a wig, no bad hair days and I saved a fortune in shampoo. I was lucky that I had no financial problems. Throughout my treatment and after I was extremely lucky to have a supportive network of family and friends around me. However I recognised that there would be some people without family or friends to support them through the journey.

I decided to volunteer for the Cancer Older People and Advocacy project with Sefton Pensioners’ Advocacy Centre as I felt I could use my experience to support others. I recognised that my experience enabled me to support people, with cancer, from a standpoint of understanding the issues and concerns they were experiencing. I know that I could not have managed without the support of my family and friends and therefore understand how important it is to have someone else on your side. Having recognised the difference that support made to me I wanted to be that person for others. I enjoy what I do and the difference it makes. Given the choice to volunteer again I would still make the same decision and would encourage others to think about the positive impact they can have by offering their time to volunteer.

Pat Wallis
Peer Volunteer Advocate
Sefton Pensioners’ Advocacy Centre (SPAC)