Margaret’s story

Recently we met Margaret Corbett during one of our Cancer, Older People and Advocacy workshops at Macmillan’s Cancer Voices Conference. This is Margaret’s story of being an older person diagnosed with cancer:

I am over 80 and a long-retired medic. Early in January 2012 my breast cancer diagnosis was made promptly, surgery, tamoxifen and a course of radiotherapy was recommended as treatment. At the end of radiotherapy I was told to expect a follow-up appointment in Oncology. Meanwhile I was invited to a specialist nurse-led group meeting. We were given a carefully prepared and designed leaflet. Topics covered included exercise, diet, lose some weight if you can, body image, sex life, risk of lymphoedema and what to do. All very good advice but I seem not to have taken it in for months, though I was living healthily and getting considerable benefit from regular exercise and significant loss of weight.

 

The treatment seemed not nearly as much trouble as I expected, but I felt mysteriously mentally distressed, a finding that I had not anticipated and found very worrying. At my first oncology follow-up appointment I was ashamed and denied any psychological problem. I had not then discovered how common it is to have such feelings. I was given a note and asked to make an appointment for a year later and I felt somewhat reassured to have the date and time firmly assigned.

 

Much of my problem has been the idea that my treatment had been ‘easy’ because of my age. I felt left out and under treated. I now believe that this was a completely wrong concept. At my first follow-up appointment I was very concerned about my prognosis. I asked why I had not been offered any form of chemotherapy. My oncologist left the room and returned with a sheet of paper showing the result of a computerized predictive tool. He said “Well, it would only make 1% of difference and it’s not safe you know”. If only he had said (without getting any printout) “We have a guiding rule here, we run this predictive tool and if chemotherapy would make less than 3% of difference we do not offer it, between 3 and 5% difference we discuss it, and over 5% we advise a course of chemotherapy”. I hope that I would have been able to accept that and I believe it would have saved me a great many bad feelings.

 

At the end of the summer I joined a Macmillan-backed Womens’ Support Group and from them was able to access a local HOPE (How to Overcome Problems Effectively) course consisting of seven sessions similar to group therapy with exercises in various calming techniques, and also, concurrently as it turned out, some sessions of counselling. The well run HOPE course worked really well for me. I was able to understand that other people had similar reactions so that I could stop feeling so psychologically abnormal. We had shared experiences and we helped each other.

 

My counselling sessions were also very helpful as I was able to identify that I have a problem with anger. It has been most helpful to know this though I haven’t done anything further about it since.

 

I would have liked more information. It would have been very acceptable on paper but, because of my undoubted denial and psychological stress, I would have liked to be offered the information more than once – perhaps even at every follow-up appointment until I could say that I didn’t need it. I now believe that treatment is offered to older patients on a basis of performance status rather than on age. I have now had the switch from tamoxifen to exemestane that was so briefly mentioned right at the beginning and I am delighted about this. There is still no written forward plan but I am less concerned than before as I do now feel carefully managed and well looked after.

 

An offer of advocacy support as part of the follow-up at the end of radiotherapy would have been very timely, though in view of how mentally strange I felt at the time I might not have accepted it. I did not ‘feel myself’ and I can’t judge how someone else would react.

 

The oncology staff do know that the end of treatment is a difficult time for many people – ‘the Lifeboat Syndrome’. Advocacy might be just the thing, possibly offered fairly firmly.

Margaret Corbett

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Why I’m a Local Cancer Champion in Knowsley

My name is Mary Spreadbury and I am 72 years of age. I have had cancer 3 times and I am still living a busy life and most of all I am enjoying myself.  I sit on the Local Cancer Champions Board in Knowsley, where KPAIS are delivering the Cancer Older People and Advocacy project.

I would like to share my experience with you. I have had 2 mastectomies and reconstruction.  The first mastectomy was in December 1995 when I was studying for my degree.  I had 6 weeks of radiotherapy (of course weekends off for good behaviour!) I went back to college and continued with my studies.  The second was a year later almost to the day in December 1996.  Then chemo and all that goes with it.

 I have had a few frights along the way.  At one time they thought the cancer had gone to my lungs, but luckily enough it was found to be the damage caused by the treatment that I have had to keep me alive.  Another time there was a lump in my neck, that was fatty tissue and so it goes on.  I always smile when they tell you that you are in remission, whatever that means.

 

Mary Spreadbury

I only had advocacy help in the last couple of years.  As I’m getting older I feel I need specialist help because my needs change with ageing.  This is why I’m volunteering with Knowsley Cancer Older People and Advocacy as it’s so important that advocacy for older people affected by cancer is a must.

Mary Spreadbury, Local Cancer Champion, Knowsley

Relay for Life

You may have noticed a comment published after we issued a post about the National Cancer Survivorship Initiative. The person who commented was Pam Bentley and we are happy to help raise awareness about the Relay for Life that Pam is involved in. This is Pam’s original message:

I had breast cancer 26 years ago and survived. I have recently completed 6 months chemotherapy and 4 weeks of radiotherapy, as breast cancer has presented in the second breast.

Since my first diagnosis I have worked tirelessly, raising funds for cancer research, and am currently Survivor Co-ordinator for Bournemouth & East Dorset Relay for Life, being organised by Cancer Research U.K. to be held in Ferndown, for the 7th year in Ferndown on 12th and 13th July, 2014. Details of Relay, as opposed to Race for Life can be found here.

My reason for contacting you is to invite as many cancer survivors, living in the area along to our event.

Relay for Life

Survivors are NOT asked to fundraise, they are asked to celebrate their survival. To this end survivors take part in the opening lap of honour, and are then invited to a celebratory party, with entertainment (all donated). This takes place as the actual teams begin their 24 hour Relay on Saturday 12th July on the field behind Ferndown Leisure Centre. As mentioned previously full details can be found on our web site.

I have been organising this part of the event since its induction, and all the survivors have enjoyed the occasion, feeling uplifted at seeing so many young people, inspired to fundraise for medical research.

I do hope you are able to publicise this event on our behalf.

Many thanks, Pam Bentley, Survivor Co-ordinator, Bournemouth & East Dorset Relay for Life.

P.S. We are a small, entirely voluntary committee.

 

We’re happy to support Relay for Life on our blog. Good Luck!

Someone to rely on

Recently project partner Dorset Cancer Advocacy was featured in the following article in the Dorset Echo.

Someone to rely on- Dorset Cancer Advocacy offering support to older people with cancer

Dorset Cancer Advocacy is an innovative service that offers support and information to older people with cancer.

Marion, Nina’s advocate

Here Nina, 69, a Bournemouth widow who has been battling breast cancer, explains how it helped her cope

“Before my diagnosis I was enjoying retirement and keeping active by walking and cycling, I had never felt so well. I was diagnosed with breast cancer following a routine scan and have undergone nearly a year of treatment since then, including two courses of chemo-therapy, surgery and radiotherapy.

I feel lucky that the cancer was found, but when they say cancer it knocks you flying. I’ve told some of my friends just the details that I want them to know, I don’t want to burden them.

I was taking part in a clinical trial during my chemotherapy course. The Research Nurse suggested I try the Dorset Macmillan Advocacy service as it offers home visits.

MAMOGRAM: Screening is to be extended in older women

The service co-ordinator came to meet me at home and then supported me for a short time, including with hospital appoint-ments, before introducing my volunteer advocate Marion Summers to me.

I could share my feelings about the cancer and what has happened to me with the co-ordinator and Marion. I knew they were there to support me. The effects of the chemo-therapy meant I would forget what people said; I felt turned inside out. Other side effects meant that I stopped driving and lost the confidence to use the bus and to go out.

Marion took written notes at hospital appointments for me to refer to afterwards. When I was offered surgery I felt stunned; I wasn’t sure how I would manage at home alone afterwards.

Before my operation Marion gave me information on getting extra help at home and meal deliveries, in case I needed it after my operation, and she also looked into local health walks.

After my operation Marion called to see how I was and find out when I would be going home.

I felt more confident with someone behind me. I was quite afraid of one particular health professional and, when we went in for the appointment, Marion said ‘We’ll do it together’ which helped a lot. I feel listened to.

Now I am getting out more, driving my car again and using the bus for local trips.

It is good to have someone else to rely on when you are alone. After my operation Marion said ‘We’ll be there for you’. It gives you a warm feeling someone saying that.”

One in three are over 70

There are around 1.3 million older people (65+) living with cancer in the UK One in three cases of breast cancer – and more than half of deaths – are in women who are aged 70 or older. Despite this, the age group is not routinely screened, although the cut-off age for screening is to be extended to 73 by 2016. One study has found that elderly women are being denied life-saving breast cancer surgery routinely given to younger patients.

You can read Nina’s story and Marion’s take on advocacy support in Every Step of the Way, our new publication.

No one should face cancer alone: new TV ad

Have you seen the new Macmillan Cancer Support TV ad?

The message is: No-one should face cancer alone so if you need support of any kind and are not sure where to start or need someone to talk to give Macmillan Cancer Support a call on 0808 808 00 00 Monday to Friday, 9am–8pm or visit macmillan.org.uk.

Macmillan’s helpline makes referrals to our Cancer, Older People and Advocacy service. If someone contacts the helpline and needs advocacy support in an area we currently provide a service in they can be directed to us. Once we’ve had the referral we can provide a volunteer advocate to support you; someone like Yvonne,

Yvonne has a lot of experience of cancer, way too much really. She has lost her husband, mother and brother in law to the disease. That’s why, when she saw a press release about the cancer advocacy service, she felt she had to get involved. She has been involved in the service since it first started and was one of the first volunteers recruited. She hoped to be able to draw on her experience of cancer to inform the support she has been able to offer others in similar situations.

Yvonne isn’t what you’d call a typical volunteer because she doesn’t have a lot of spare time on her hands. She’s in her 50’s, works full time as the deputy head of a school for children with learning disabilities and in some of what little spare time she has she already volunteers at her local hospice. So, Yvonne’s role as a volunteer advocate for older people affected by cancer takes place mostly in the evenings, weekends and during school holidays.

There has been a lot of training. Cancer is a complex and emotional subject and advocacy itself takes a bit of understanding and getting used to. But, as a result of the training she’s done Yvonne feels she has greatly increased her ability to provide support to an older person affected by cancer. She understands that her role is to support and not advise. She really enjoys working with older people and is clear that she’s there to empower the older person to speak for themselves.

Take Mavis for example. Yvonne is Mavis’s advocate. Mavis is 92, lives alone and has blood cancer. Yvonne visits her regularly at weekends to see how she’s doing. Sometimes Mavis doesn’t cope very well, she forgets to take her medication and sometimes forgets to eat. Yvonne provides supports by developing coping strategies for her. Mavis has toyed with the idea of moving into residential care and while she’s keen to remain at home she knows that Yvonne is there to support her whatever she decides.

Yvonne also acts as Sandra’s advocate. Sandra is 77, lives alone and has no family. She has been diagnosed with breast cancer and had an operation in April 2013 followed by radiotherapy. Unfortunately Sandra lost a very close friend at the same time. All of this has left Sandra feeling isolated and unsupported. Yvonne took her to a local cancer support meeting and to the local breast cancer support meeting. Both are held in the evening so Yvonne was able to take her a couple of times until she was used to and felt comfortable there. Yvonne was also able to refer Sandra to a local befriending service to help with her isolation.

Acting as a volunteer cancer advocate has really struck a chord with Yvonne. She’s now looking at opportunities to change career and move into professional advocacy because what she’s been doing makes a real difference to older people’s lives and gives her real satisfaction.

World’s largest cancer database launched by PHE

The world’s largest single database of cancer patients is being set up by Public Health England in a major step forward to harnessing the power of data to revolutionise care.

This new service, announced today at PHE’s National Cancer Intelligence Network ‘Cancer Outcomes’ Conference, will deliver near real-time cancer data and contain detailed clinical information on all 350,000 cancers diagnosed each year across the 50 million people in England. It will also include more than 11 million historical cancer records going back 30 years.

This single cancer registry follows the completion of a five-year project to merge the eight cancer registries in England into a centrally managed network of registry offices working to common standards and processes. This network is now overseen by PHE.

For the first time cancer specialists across the country will have instant access to detailed clinical data, including the way tumours respond to different types of treatment, which will speed up work to deliver personalised cancer medicine to patients in the future.

It will eventually track how each sub-type of cancer responds to treatment, helping doctors target genetic mutations with a new generation of drugs designed to work most effectively on relatively small numbers of patients.

Jem Rashbass, national director of disease registration at PHE, said:

The real advances of personalised medicine can only be achieved if we can match the data we have from genome sequencing with very rich clinical data on each patient.

Cancer-registry modernisation in England is about to deliver the most comprehensive, detailed and rich clinical dataset on cancer patients anywhere in the world.

This is game changing. It will fundamentally revolutionise the way we diagnose and treat cancer. In effect, every cancer patient has a rare disease that is different in some way from another cancer. This allows us to carry out refined searches to see how other tumours have responded to identify the optimum treatment as early as possible. The hope is that in five years we’ll be sequencing cancers and using therapies targeted to it.

This resource is unmatched anywhere else in the world, but is essential if we are to deliver the best cancer treatment and care to each individual. The value can only be achieved with the full support of the public who we are here to serve.

The system is set to provide a near real-time collection system that receives monthly data from every acute NHS trust. This includes histopathology reports, multidisciplinary team meeting decisions, radiotherapy and chemotherapy treatment data, administrative details such as route of admission and access to imaging information which will enable accurate cancer staging.

Advocacy support to elderly brother and sister in Sefton

I have been visiting an 86 year old man who was living with his sister in their own property.  He had been diagnosed with bowel cancer after an admission to hospital.  During his stay the ward staff and explained his diagnosis and made a number of follow up appointments which he had not attended.  I was asked by the palliative care nurse if I could attend his next outpatient appointment with him.  The gentleman gave his consent to this.  During the appointment the doctor explained the treatment options to the gentleman and asked relevant questions about his home environment.  She evaluated this information and suggested a short course of radiotherapy as an inpatient.  She was pleased that the gentleman had support from an advocate as she had been concerned about him when he was an inpatient.  The gentleman accepted this treatment option as it took into account the affect a daily journey to the hospital would have on him.  The doctor explained the side effects and provided information that he could take home.  I visited him again a few days later to help him go through the literature as he had difficulty reading.

During the advocacy process his sister was also diagnosed with breast cancer.  She had been providing him with considerable support and so it was necessary to arrange respite for the gentleman while his sister was receiving treatment.  His sister was pleased to know that whilst she was in hospital he would be receiving 24 hour care and this relieved some of her worry prior to her admission.  She has told me that she has found it very difficult because they were both diagnosed so close together.

Michael Peace

I am 71 years old I served 30 years in the Police force retired in 1990 and worked for 2 building Societies setting up their fraud systems. I was diagnosed in 1992/3 with Non Hodgkins Lymphoma; I received chemotherapy treatment as a day visitor. I was then diagnosed with Prostate Cancer in 2009 and advised that I would have Radiotherapy.  I then suffered what was understood to be a stroke but turned out to a brain tumour caused by Non Hodgkins Lymphoma which had not been fully killed in 1993 and had moved up the spine. I had a strong chemotherapy on and off for about 5 months. I then had to be treated for the Prostate by radiotherapy. Later that year I had blood poisoning and then in February had another slight stroke.

Since then I have tried to help others as I feel I could be of help to anyone who is going through the trauma of the treatment for the first time and generally passing on information only I could have by being there and done it so to speak. I am quite prepared to attend any meetings to explain what happened to me. I want to contribute and repay some of the care and attention that was given to me.