Patients, family and supporters share their experiences of our care and their support
Andrew and Lymphoedema treatment
07 January 2014
I learnt the swelling I was suffering with was a condition called Lymphoedema. I could only relate this word with elephantiasis, something I thought elderly females suffered with so I really struggled to understand why this treatment would benefit me. When I received my appointment, I noticed rather than taking place at Addenbrookes this was scheduled to Arthur Rank House. All I kept thinking was why do I know that place? Even on the day whilst sitting in reception, I found myself once again asking what am I doing here? It was only when I saw elderly, tearful lady being comforted and led to a room from reception I clicked, this is a hospice. My realisation then prompted questions like, are they not telling me something? I imagine like 95% of the population I thought a hospice was a place you went to die.
I met Sue Rossiter and I then felt more relaxed. My treatment was on my fat neck, having lost several stones in weight as a result of the surgery and side effects of treatment, I felt my neck now looked out of proportion to the rest of my body and I was really uncomfortable with this. The Lymphoedema team created a programme of exercises, massage and taping to help lessen the swelling and to aid my movement. Sue and the team were great, they explained clearly what they were going to do, what I was going to need to do and what changes I could expect to see. They worked wonders and it was great not having to go to Addenbrookes, not having to queue and wait for long periods to be seen. It was comfortable to come to the hospice once a month and see Sue and the team. Seeing me on a regular basis they really noticed the difference and could see the dramatic changes that were taking place. The tape used is called kinesiotape and it facilitates lymphatic drainage so reducing the Lymphoedema enabling better movement and flexibility. I found it amusing as people would stare and strangely they seemed to stare more at the skin tone version than the bright blue one so I proceeded to research the tape on the internet and bought brightly coloured and even union jack printed tape that I could use. Through using the tape, doing the exercises and massage at home with the help of my wife, the treatment has really made a difference. It has unfortunately meant however that I now have to watch coronation street if I want my wife’s help! One of the biggest things for me was the staff being able to feel what I was feeling, through massage Sue and the team could feel lumps and bumps that I could feel, they could explain why they were there and how the massage would help to manage the condition. They helped me understand what was happening in my body.
Over the last 18 months, I have regained my jawline, which was a big thing for me; my neck was too big for my smaller frame. I am actually a bit of a poster boy now when I visit the hospital, all the staff are interested to see my progress, they like to see the difference and the results of my programme. It has also given me the confidence to take back control and I made the decision having been a keen weightlifter prior to my illness, I wanted to get fit again so I bought a pushbike and fitted it with a static rear wheel frame and started to build up to cycling an hour a day in my home, now outside on the roads I am pushing between 60 and 120 miles a week. It has changed my outlook on life and empowered me to do other things. It has made me relook at my lifestyle, I never had a bad diet, I enjoyed a drink but I am now three years in and I want to give myself the best chance I can for when I reach my five year check. Naturally I have ongoing problems, I can’t eat much, I can’t eat spicy food as my throat is still quite raw but it is healing all the time, the future is unknown but I have learnt to adapt.
When I reflect on my treatment at the hospice, they’ve done such a good job, I am even singing their praises when I return to appointments at Addenbrookes, I’m encouraging referrals to the hospice. It has provided me with a level of self-confidence that I could never think I could have and I have even found myself volunteer as a cancer awareness champion so I can help others and dispel the myths which surround cancer and hospice care.’
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