I have to say I have received excellent care which I am very grateful for. (Thank you Mr. Hartley for the cutting out and Dr. Maraveyas for the pouring in). I cannot fault the health professionals for what they do in their field, however, there are other ways to be considered when looking at getting the best result for each individual.
At diagnosis, it was really difficult to feel all control being taken away.
As a result of my research I have found an area where I can aim to improve my quality of life, both physically and psychologically. I have found academic research and sources relating to how a healthy lifestyle, following diagnosis and during treatment, can support mainstream cancer treatment. There is a body of evidence suggesting that healthy eating and exercise improves quality of life, and has a measurable effect on cancer outcomes. This is promoted by the third sector, but it seems to me that there is an obvious gap in the services which the NHS are providing for some cancer patients.
During my journey, I have enquired many times and through a number of routes, about advice on how exercise and healthy eating can support my condition. I have encountered a lack of awareness and knowledge.
I found it quite astounding that information on healthy eating in general and specific advice for my condition (or others) was not given and was not easily available. When I asked to see a trained nutritionist I was given the answer that “as I am still eating is not usual practice to refer”. When I went via a different route through my GP I was able to see a nutritionist in the community, but was told that no one in the team was trained to deal with a cancer diet. The same happened when I asked for to see a physiotherapist. I had no joy when I went through the Council’s Active Lifestyle. They were kind enough to provide an appointment, even though they usually only deal with people who are looking to lose weight, and so had no specific advice on what kind of exercise would improve my quality of life.
So I decided that something needs to be done, as helping people to keep well and active is good for both the patient and could ease the pressure on the limited resources of the health system. So I wrote to our Centre and now I am in discussion with the local Head of Oncology to improve services in our area.
I found fellow patients who had the same stumbling blocks as me and also felt the need to do something about it ….. SO here we are doing it. Join the crew!!!
Have you had a similar experience? If so join us – We have the power as patients to tell professionals how we think services should be improved. Sometimes it does not take much and small steps are good, they pave the way.
Reka – you are truly inspiring and its really interesting to read the medical evidence re: exercise. I was looking at Lance Armstrong’s website http://www.livestrong.org/ and was wondering if it might be worth contacting them about how they raised sponsorship, awareness etc. Anyway, fantastic stuff, keep up the good work! Toni
Suddenly there is a lot of media coverage of the importance of exercise! Hurray! Just to say that the absolute purpose of the ride, rather than raising lots of money for cancer charities, although that would be great! is to raise awareness of how good you can feel whilst you are receiving treatment for active cancer. Having chemo, radio, hormonal treatment etc doesn’t necessarily mean huge reduction in quality of life for everyone. Reka and I have both found that cycling, walking, swimming or whatever you like doing physically really does for us minimise the side effects of chemo drugs particularly. There is a lot of new research coming out too about cancer cells not at all liking the heat produced by the body during intensive exercise, so for all sorts of reasons, including really good quality of life, we think exercise is important and that’s what we want to say on this bike ride!
Can’t agree more with you on this Penny especially your comment ‘the cancer not liking the heat produced by the body’, interesting. Reka, keep it up you are an absolute inspiration with this & the message is really reaching folk, you’re on a ‘real’ journey and we look forward to reading more & seeing you soon. xx
Hi Reka, Penny and co
It was great to meet you all today at the Velindre Cancer Centre in Cardiff. I really admire your response to the need that something needs to be done to help people to keep well and active during and after cancer treatment.
Evidence is gathering that a healthy lifestyle with good nutrition and exercise does reduce the risk developing cancer and of recurrence but more is needed.
The Therapies team at the cancer centre here in Cardiff which includes physiotherapists and dietitians have worked with other professional colleagues to produce a ‘Living well with and beyond cancer’ programme which patients can access at any stage of their cancer journey and we believe the earlier the better. This isn’t something that patients wait until they have finished treatment to take up and those that do access the programme after treatment has finished say …’if only I had heard about this at the start of my treatment’
So keep up this amazing campaign and keep those wheels turning – you are an inspiration.
All the best for the last couple of days of ‘The Ride’