Sometimes people say they can manage when they can’t; Sometimes people don’t want to be a bother…

In today’s post, Tessa tells us about her first experience of being a volunteer advocate:

I am a volunteer McMillan advocate for Help and Care in Bournemouth, part of Dorset Macmillan Advocacy.  It was by chance that I found this position whilst looking on Google for volunteer positions in and around Bournemouth a couple of years ago.

My first client was over eighty, and had been diagnosed shortly before I met her with breast cancer. She needed help organising hospital appointments and support with coming to terms with a cancer diagnosis late in life. 

Although she had no local relative support and lived alone she had a no nonsense approach to life and a wonderful accepting attitude towards her illness.

As my first partner she was a delight, any nervousness about my role quickly disappeared as she informed me clearly about her needs, moving on quickly to find out about me.  She had the most wonderful stories she wanted to share about her life and was so grateful for me just being there, never mind when I did things for her.

I arranged to take her myself to her first appointment after her operation with the Consultant.  This was a real eye opener, as I had not considered the difficulties involved in taking an elderly person to hospital alone.  Dropping her off at the entrance to the hospital seemed to go well.  She insisted she knew where she was going, and would meet me (after I parked the car) in the department.  So far so good.  Fifteen minutes later when I got to the department there was no sign of her and I began to panic.  She did not in fact have any idea about where she was going and as I rushed around the huge hospital back tracking to where I left her my heart was in my mouth.  Fortunately I found her standing by a lift, telling a kindly orderly that she was looking for me.  He was looking bemused by her and so when I suddenly flew around the corner and she saw me we all sighed with great relief.

Tessa

The meeting with the Consultant went well. Although my partner was elderly, her amazing personality and zest for life endeared her to all.  I had been nervous about whether the professionals would accept me in my role but they were all respectful and accepting of my position.

Following this trip, I made arrangements for the ambulance service to pick her up and if I was required to be there would meet her at the required time.  Certainly it is always worth thinking about logistics and mobility before setting out on expeditions and this was one of my first lessons.

There has now come a point when my partner no longer requires my assistance and so I had to go through the process of letting her know and saying goodbye.

This was very hard, we had formed a great bond, she relied on me to read letters to her and organise appointments but from a cancer perspective she did not really need be to be acting as her advocate any longer.

I understood this but on the other hand I felt great sadness at having to say goodbye to this wonderful, brave woman. 

Over three weeks I prepared her for our ending and on the final day we hugged, we both understood it was at an end but it felt sad and I could see she was a little confused.

 I am grateful for this first experience as a volunteer advocate.  As an advocate you really have no idea what your partner’s needs may be and they can evolve as their treatment and circumstances change.  As an advocate you need to be conscious of this.  For me it is an extremely worthwhile and very necessary role.

Things I learnt:

Sometimes people say they can manage when they can’t

Sometimes people don’t want to be a bother

Sometimes people are more ambitious than they are capable of and need a little help

This has taught me to listen very carefully to what is being said and to try to ensure that my partner feels they can ASK for help and know they are not too much trouble.

Tessa Watts, April 2016

Advertisement

‘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

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.’