Mindfulness and Me
I don’t think that I have ever really written about the trial that I took part in which was to see how Mindfulness Based Stress Reduction (MBSR) techniques could help those with Metastatic Breast Cancer deal with their diagnosis and the emotions and depression that frequently accompanies such a diagnosis. Although studies have been done with those diagnosed with Stages 0 – III there has not been a lot of research into how it can help those with MBC. The trial took place over the winter of 2010 – 2011 and was lead and facilitated by Dr Caroline Hoffman, PhD. of The Haven in London (formerly The Breast Cancer Haven) and the University of Southampton School of Medicine. The participants were chosen from patients at Southampton General Hospital, which is part of the Southampton University Hospitals Trust.
At the time I was about 3 years into my MBC diagnosis and I was really struggling with things emotionally. What was the point in being alive? Why was I alive when so many had already died who had family and children that then didn’t want to leave (I am single, no children so no immediate family)? How long did I have? Blah, blah, blah. If you have mets or a similar dx you will understand the scenario. One day at the breast cancer clinic at The General I overheard one of the Research nurses talking to other MBC patients asking if they would like to take part. Now, understand that this is England and the idea of mediation is not really a part of the culture. Some of those she was asking were older women who I think were having thoughts along the lines of a therapy session where they would have to talk about their feelings etc. Very un-British, don’t you know. As I have been one of their more ‘troublesome’ patients (I think I have been labelled as aggressive because I get upset some times and frustrated because my treatment at The General has not always gone smoothly) I didn’t think that she would ask me, so I asked her about the trial.
For several months I had been trying to come to terms with the fact that my cancer was stable and I was still alive. As I was initially told I had six months to a year to live, then two possibly three, I was having to let go of the idea that I was going to die soon and just get on with some way of living with MBC. This is not the kind of thing that you expect when you get a dx of incurable cancer and you look at some of the stats. I gave that up quite quickly because it was just too frightening and I really don’t like the idea of thinking of myself as being a statistic. After all I was still alive so I wasn’t going to be doing this ‘on time’ anyway, so lets just chuck that concept out of the window as a non-starter. In short, the stats had let me down!
Anyway, I was signed up as number 2 in the first part of the trial. Although some of Caroline’s studies with Early Stage Breast Cancer patients have been published this is all I could find about the trial that I was on … at the moment. http://www.southampton.ac.uk/mind/pdfs/Caroline%20Eyles.pdf
anxiety and depression in women with metastatic breast cancer (MBC). Funded by NIHR RfPB. Eyles C, Leydon GM, Hoffman C, Copson E,. Lewith G. 01 March … and http://www.thehaven.org.uk/research/mbsr-treatment-fatigue-anxiety-and-depression-women-breast-cancer-southampton
As part of my strategy of learning to live with my diagnosis I had turned to alternative therapies, Chinese Herbal Medicine, supplements etc, but I had also started to look at the techniques I could use to help me with the emotional journey and I had already come across Mindfulness Meditation. If I remember this was influenced by attending an introductory session at the Penny Brohn Cancer Care Centre near Bristol. http://www.pennybrohncancercare.org/ However, meditation is not an easy thing to ‘learn’ on your own and so it almost seemed pre-destined when the MBSR trial fell into my path. I needed something more structured, and to have something to make a commitment to.
I would have to say that doing this trial was the single more helpful thing that I have done in the five and a half years since my diagnosis, and in my opinion it should be offered to everyone with a MBC dx, or a dx of any metastatic cancer. The one thing I would love to be able to do would be to take away those awful months of tears, despair, anger, frustration and fear that follow being told that the cancer has spread and is now incurable. Let’s face it, who the hell ever walked out of the consultant’s room and punched the air and said ‘let’s go celebrate’? Those months are wasted when they could be put to much better use with getting on with living and sorting yourself out and adjusting.
I would have to admit that I do not practice Mindfulness as much as I should, but then one part of the trial was using the technique that you found suited you the best. There is a mountain meditation which one lady just couldn’t get into, but others loved. What I have found to be the most useful is really what I call Micro-Mindfulness of just being able to stop and take some deep breaths concentrating on the cool air coming in through my nose and the warmer air going out. Of just being able to remind myself that right now, in this very second I am safe, I am ‘well’ and I can cope. I can take myself and visualise a favourite place where I am relaxed and safe, where there is no pain just relaxation. Although Caroline might think of me with dread because I was the most emotional and difficult of those taking part (I remember her trying to persuade me not to give up on in when I was in tears in the Ladies at the hotel where the course was taking place) I think that all of us found MBSR to be of genuine help. Towards the end of the course we had a Retreat Day on a Sunday where we were not allowed to talk to each other, or the hotel staff except to be polite and not appear too odd to them! We had to eat Mindfully and on our own and one lady later said that her family couldn’t believe that she hadn’t spoken all day. I know some people gasped with shock when they were told they had to be silent all day, but I think that many of us, myself included, actually found it to be the highlight of the trial. It may have been because in many ways it actually brought the whole thing together for me, and living on my own I don’t have a problem with not talking.
I feel that it showed me the strength that I have and the control that I can have. It showed me that there is still safety in my life, and by making yourself concentrate on the absolute present moment and experiencing it as a positive embrace of life right now you can retrain yourself to appreciate what you do have in life, rather than what all of us with a MBC dx have lost in life. After all this is the only actual moment that we are alive in. Five minutes ago has gone into history, who knows what will happen in five minutes time because it hasn’t happened yet; this is the moment that we do have. MBSR has turned my journey into one of acceptance of my dx and of the cancer that I carry, and by accepting it I feel that I can push it to one side and ignore it most of the time. Of course there has never been a day in the last 5 and a half years when I have not thought about it, but now it is like thinking of pain in the butt, rather than an all consuming pain in my heart and soul that is draining the life out of me. If any of you get the chance do a course in MBSR whether you have cancer or not.