John's story

I live in Warwickshire now with my dog, a long-haired dachshund. I have friends across the world whom I visited regularly until my cancer diagnosis. I have two daughters and five grandchildren, and I have had a very successful career and thoroughly enjoyed my life.

I received the news that the MGUS had become myeloma from an inexperienced registrar. She appeared oddly pleased to tell me and, whilst I wasn’t too upset by the dialogue, I felt it entirely inappropriate to be told by someone who was clearly untrained. I made a complaint, and the hospital did take my point that she was not up to date with the right information. Thankfully, my subsequent experiences with healthcare professionals have been much more positive.

My treatment started almost immediately at the Brodey Centre in Banbury, with my consultant being an amazing clinician based in Oxford Churchill. He has been outstandingly good at communicating my progress and treatment.

I felt it took a little time to come to terms with the future, and I dwelt on things like how I would take care of myself further down the line. I did a fair amount of research around myeloma, and spoke to my consultants extensively about it, so I understand the likelihood of a recurrence varies from person to person.

What most people don’t realise is that this particular cancer has no cure. Even if you have T-cell therapy, it will come back. It doesn’t go away for ever. I think I was able to, not calm myself, but be sanguine about that and change elements of my lifestyle that will make it easier to cope in the long term.

I have taken out health insurance with Benenden for several years, and they were the ones who advised me about Penny Brohn UK. I started a conversation with the charity and was so very fortunate to be offered a place at short notice on their April wellbeing retreat.

I am very self-sufficient, and I have spent the last ten years living alone, so I knew that being part of a group was going to be a different experience for me.

But I gladly say that the time I spent with Penny Brohn UK was cathartic, life enhancing and thoroughly valuable in so many respects. It has helped me create a manifesto to make changes in my life that I now consider of outstanding importance to me. 

It affected how I communicate with people, my relationships with friends and family, my direction in life – all in my view to the better.

The retreat consisted of two men, both of us called John, and 14 women. It was a very friendly group, and apart from the occasional tears, a very open and welcoming exchange.

Towards the end, we had this talk about what you have in your toolbox to help you live well with cancer. It was a round robin around the room with each of us sharing what we’d learned. People highlighted things like changing your pace of life, self-love, creative activities, time in nature, nutrition, and much more. The closing session stuck in my mind for that reason.

The other key recollection was the ability to be open about your condition with people. Everyone felt safe in the centre, which I found quite unique, so I didn’t have to spend any time guarding myself.

In fact, my time at Penny Brohn UK was uniformly positive and the impact was of tremendous value. I stated at the beginning I was a cynic. I left, in my view, so much less cynical, but calmer and determined to fight for an extension of my life by taking note of all I learnt on the retreat.

I have looked at my Health and Wellbeing Wheel both before and after the retreat, and I noted the biggest changes in my wheel related to my body, in terms of nutrition, physical activity and symptoms. I believe that I’m attempting to look after my body so much better now.

My final thoughts are given over to the staff of Penny Brohn UK. Welcoming, warm, caring, knowledgeable, so very kind and understanding. I know I would be so much less in control of my life without the help of all those great people.