Older People Living with Cancer

Peer advocates supporting older people affected by cancer

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‘Tell us what is really happening to you’

Health professionals want and need to know about the side effects that people are experiencing as a result of cancer treatment.  This was the message that came across strongly from Dr Rachel Hall, Consultant Haematologist, and Lisa Hammond, Stem Cell Transplant Specialist Nurse, when they spoke to the Dorset Myeloma Support Group in September.

Marion Summers, a volunteer advocate with Dorset Cancer Advocacy, is the support group’s organiser and works with the Group Leader Carole Jones. Dorset has double the national incidence of this rare cancer of the bone marrow owing to demographics but still a GP may only see one case in their whole career. For this reason Dorset GPs are visiting the clinic at Royal Bournemouth Hospital each week to increase their understanding of the disease and its diagnosis.

Rachel stressed that ‘one size does not fit all’ and that each individual needs to be carefully assessed when considering treatment options. The assessment takes in to account factors such as their environment, their support network and any other illness or health problems that they face.  Rachel said that she favours a multidisciplinary team approach and continuity from the health professionals’ side.

Front L – R Marion Summers, Rachel Hall, James Summers; Back L – R Lisa Hammond, Carole Jones

Front L – R Marion Summers, Rachel Hall, James Summers; Back L – R Lisa Hammond, Carole Jones

The management of side effects is crucial in aiming for good quality of life for patients. Lynn Maxwell of the Community Cancer Nursing Service, said that her team advise patients to document their side effects and bring this record with them to appointments.  Rachel Hall said it helps to be able to look back over several months and pinpoint possible causes of certain side effects. She described how having a diary on hand avoids the possibility of seeing the doctor after a particularly good week and forgetting to mention that the previous three had been very difficult.

Some patients may feel they can’t or shouldn’t talk or complain about side effects but Lisa Hammond said ‘Be honest… tell us what is really happening to you.  Don’t be afraid that we will stop your treatment. A lower dose could reduce or eliminate the side effects.’

Rachel recommended that patients prepare for an appointment by writing down any specific questions about their treatment, then if the answers given aren’t clear asking for more explanation. Taking up the opportunity to talk to the nurse specialist at a separate appointment for more information and to gain a thorough understanding can help too.

Marion said afterwards ‘I think the participants benefited from Rachel Hall’s talk because she was able to explain the aims of treatment in achieving a remission or plateau of multiple myeloma, to preserve a quality of life, extend remission and length of life and to prevent complications and control symptoms. She also explained better use of existing drugs and what new drugs are on the horizon.  Participants had the opportunity to question Rachel and Lisa about different treatments, the advisability of having vaccination against Shingles, and the time scale of when new drugs will become available.  The feedback from the members after the meeting was very positive.’



Living with the side effects of medication

Through advocacy we are supporting people affected by side effects of medication to see what can be done to manage and, where possible, reduce them.

The side effects of Tamoxifen were the subject of a discussion on BBC Radio 4’s Woman’s Hour earlier this month.  New research from Breast Cancer Campaign has shown that women who give up taking the breast cancer drug because of the side effects may be at risk.  The very nature of the side effects themselves can be a barrier to getting help with them and sharing feelings about them with a trusted volunteer advocate could be the first step towards managing them better.

Dr Daniel Rea, Consultant Medical Oncologist at Queen Elizabeth Hospital in Birmingham, suggested on the programme that since the side effects can be embarrassing for women ‘the person they can talk to with more time is the Clinical Nurse Specialist  who is skilled at drilling down and understanding exactly what the patient is going through, and can act as an intemediary between the doctor and the patient to make sure that we’ve listened properly, have heard the message and then try to address it’.

Describing the how breast cancer treatment can be followed by years of medication Baroness Delyth Morgan Chief Executive of Breast Cancer Campaign said ‘the hope for many in the cancer community is that in the future more cancers will be able to have this sort of chronic management but it means that the support has to be in there to help people deal with the day to day living with it’.