Patients, family and supporters share their experiences of our care and their support
Simon Baker and Hospice at Home
28 August 2014
In 2005 his Mum, Jennifer’s, illness had started with what she initially believed to be a water infection, following tests at Addenbrookes Hospital it was sadly found that the symptoms were much more serious and were actually as a result of cancer. Simon remembers ‘Mum was diagnosed at the same time London was awarded the 2012 Olympics Games. Mum was a big sports fan and Dad clearly remembers having a conversation with her wondering whether she would be alive to see the games when they arrived’.
Following the initial treatment at Addenbrookes Hospital Jennifer was referred to The Royal Free Hospital in London, with these monthly visits to the hospital Simon became the chauffeur. Simon would drop his mum, dad and sister; Claire, at the hospital and then return again to collect them after each and every appointment. He remembers the journey vividly they would often stop on the way home for a meal somewhere nice along the river in Hertfordshire.
Sadly the time came when the hospital could offer no further treatment and Jennifer was referred to Arthur Rank Hospice. The Baker family already had links with us as Simon’s Grandma had passed away in the hospice several years previous. Simon recalls his mum did not want to come into the hospice though, she was very clear she wanted to remain in her own home, in her own bed surrounded by familiar things and most importantly her family.
She was however grateful for the opportunity of using the service Hospice at Home could provide. This service meant that she could remain at home and the whole family received support, whilst mum received the professional care provided. ‘Dad got a much needed break and support from the nurses who visited and we found it such a comfort to know mum was receiving the best care.’ Simon continued ‘I felt so alone and I worried for my dad, I didn’t want him to be alone. I even found myself worrying about losing him as well, the nurses assured me it was normal to feel that way.
Losing my mum made me realise how important my parents are and the fear of losing my dad too were emotions that were really hard to deal with but the support I received helped me.’ ‘It was a strange time; we did lots of research on the internet. We found one site that pin pointed key stages in the illness and we found them so very accurate, the way the illness progressed was almost text book. The drugs mum had been prescribed to relieve the pain meant she would sometimes see strange things, we would have conversations about the images I couldn’t see but she could and sometimes had a laugh over how surreal it was. She knew it was the drugs playing tricks but it sometimes felt very real.
‘Mums friends regularly popped in and out. We would take it in turns to sit with mum, one day I remember I sat on her bed and she started to say her goodbyes, she told me to look after dad and make sure that I take him to lots of sporting events. This was a really difficult time but sport is something we both really enjoy. We said all the things that were important to us and I made sure Mum knew how grateful I was to her and dad; I didn’t want anything to remain unsaid.‘
‘One week later at 10.30pm surrounded by her family, aged 61 and just five months after celebrating their 40th wedding anniversary Mum passed away. This was almost 2 years to the day that she was told of her illness.’
‘Mum loved the Lake District and it is somewhere we go to feel close to her. We have a plaque in the Baker name in a remembrance garden in Grasmere; one of her favourite places. Mum was the Assistant Accountant at Darwin College for many years, the College allowed us to have put a bench in the grounds overlooking the Mill Pond in her memory. We just wanted to keep her memory alive.’
‘Following mum’s passing away I wanted to give something back to the hospice, but Anna, the voluntary services manager reminded me that recently bereaved individuals were unable to volunteer within the hospice in a patient facing role until two years after their bereavement. I remained keen to help however and working around my job I decided to help with external activities, regularly helping out and tidying up the Hospice gardens. I enjoyed this and felt I was giving something back. I am also keen to remain involved so that one day my involvement can develop further.
I remember feeling quite lonely when I lost mum, even though I was in my late thirties, she was still my mum and I would like to help people who feel like I did, if I could in the future.’ During the Olympic Torch Relay in 2012 I had a job as part of the relay team, this enabled me to make a surprise visit to the Hospice with a torch for the staff and patients to see and hold, the week before the relay came to Cambridge, it was lovely to see the pleasure it gave people who would perhaps be unable to go outside and see the relay when it passed the Hospice on it’s way into the city.
‘As a youngster, I was a keen sportsman, I played rugby, football and cricket but as mum would say, at over 6 feet in height, I was not built to be a runner. But strangely, after mum passed away I wanted a new challenge, I decided I would give running a try, maybe it was to prove her wrong. Initially it was hard, I would go out for a mile or two and didn’t really enjoy it but then after a short while I realised I was finding it easier and could run a little further, this gave me the inspiration to train more seriously and I entered for the Great North Run, I loved it.
After this on one of the days when I was at the hospice Tasha, the marketing and events officer suggested I take a golden bond place for the London Marathon on behalf of the charity, this was a huge commitment but another chance for me to give something back, I asked for time to think about it but by the next day I had signed up. I had a running vest printed saying ‘4 U Mum’ and I began training per the 16 week plan on Boxing day 2011.
At the time the busway was a shingle pathway, this became the site of most of my training that snowy winter as it was less slippery than normal footpaths. I would do miles back and forth, spending the time whilst I was running thinking about mum and wondering what she would think of me taking on such a challenge. The training went well, sessions were hard but my determination remained throughout. Family and friends would come out and run some of the miles with me or cycle alongside, this was invaluable at times.
Before I knew it the big day was here. I travelled down to London with the family but as nerves set in I left them at the tube station and went off Greenwich to start my run with thousands of other nervous and excited runners, many there for similar reasons to me. The family waited to wave and cheer me past Surrey Keys at mile 10 and again at mile 21. The support from everyone lining the route was amazing, I made it through to the finish. The day of the marathon is a celebration really; it is a celebration of all those weeks of training, all those miles and hours spent running up and down the busway and around Cambridge.
When you are running for such a great cause and in memory of someone special it is so worthwhile. Mum thought I wasn’t cut out to be a runner but I know she will be pleased I am now a marathon runner’ I raised over £2,000. I have since joined BRJ Run & Tri in Huntingdon, I ran Chester marathon last year and plan to run Berlin this autumn, you could say I’m hooked.
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