What I would like to do in this forum is find people with follicular NHL, who like me would like to remain as active as possible as long as possible. When I was first diagnosed 10 years ago, one of the first things I did was to buy a boat and fulfil a lifelong dream of sailing round Britain. I started sailing with my wife of 50 years and after some warm up trips to Devon and Cornwall in 2011, we set off for Scotland in 2015. The accounts of our adventures are on https://milosails.com - but sadly after looking after me so well for 9 years my wife developed an aggressive form of endometrial cancer and died in January this year. Having recently completed a bereavement counselling course I am now trying to develop a new way of living as a single person - not so easy when you are a sailor. So I am starting this forum to seek out like-minded people who have similar medical challenges but a love of adventure also. I hope to organise sailing trips in the summer and skiing trips in the winter and other self-help activities, but before i do this - first a bit of background
I was first diagnosed with a tumour by a Chinese masseur when attending a Chinese Medicine Conference in Beijing in January 2009 (10 years ago) who, when massaging my stomach said "you go doctor!". When I did it was dismissed as "A bit of bloating - nothing to worry about", but being a university professor of biomedical engineering I was so positive the masseur had detected something that I insisted on an ultrasound scan which later detected a massive tumour (13x8cm) wrapped around my aorta diagnosed as slow growing follicular lymphoma. On further investigation the tumours were grade IV and the cancer had spread to my bone and bone marrow. I had immediate RCVP for 6 months which reduced the tumours to chards and cleared it from my bone and bone marrow to the point where I could have my stem cells harvested in March 2010. Since then I've had 3 relapses in 2012, 2015, 2017 - the first two were single tumours and successfully treated first with high grade radiotherapy (2012) and then low grade radiotherapy (2015). In 2017 my slow growing morphed into fast growing and I had a more aggressive chemo, RCHOP for 4.5 months. Since then I have been on a 2 year Retuximab maintenance therapy every three months which has kept me going quite well until I just recently contracted Shingles - a risk as I am immune-supressed.
Now I am on my own I have more time to help others. I'd like to set up a CCC group Clifton Cancer Coffee morning for people with follicular or closely related NHL. I'm also training as a holistic masseur to massage people with cancer (the fact that a Chinese masseur saved my life 10 years ago (I was totally asymptomatic) has urged me to do this and give something back). Also I have benefited from advice from Penny Brohn- the four pillars of cancer avoidance - Good Food; Exercise; Relaxation and Avoiding Stress and through cycling, sailing and skiing am trying to live as active and healthy a life as long as possible.
Anyone interested in joining me in any of these activities - do get in touch - I live in Bristol, share a holiday home in Devon, keep my boat in the Western Islands of Scotland and ski in Switzerland - so I cover quite a large area
