I wrote this blog post back in May, but didn’t get round to publishing, as it was never quite finished and always quite rambling (still is….)!! It relates to experiences in February 2017. In the blog, I refer to a conference in October – well – that is where I am just now!! The Mesothelioma Patient and Carer Day, organised by Mesothelioma UK.
The reason I originally wrote this post was to say Thank You to all of you who have provided me with overwhelming love and support over the past months. That still stands. YOU have made this experience much easier, given me reasons to hope, and to live. Thank you. 🙂
Here goes. Home after the VATs procedure and I was feeling good. Better than I had done for ages. I had got through the anaesthetic, VAT surgery and post operative chest drain… any remaining pain was quite manageable. Slight bump in the road in that I was allergic to the dressings and their removal was just like peeling off a layer of skin…. Nice!! Allergies certainly notching up… And there were more to come.
I had posted my first blog and had “come out” to the world about my diagnosis.
The response was incredible. I am still completely overawed by all the people who took the time to get in touch, write cards, send presents (such thoughtful presents too – you know me so well!!!). It makes such a huge difference to know that there are people out there rooting for you. If I (still) haven’t responded to everyone in person – please accept my apologies.
It got me thinking about Love and it’s importance in day-to-day life. I tend to be fairly liberal in giving love. In the main, this has been a totally rewarding approach to have; not something I consciously chose either. It reflects my upbringing where I was taught it’s ok to love and respect, plus I was given the skills to feel confident in doing so. This approach in the workplace has been particularly rewarding. I really believe that if we work towards love and respect across the hierarchy, acknowledging that everyone’s role is of equal importance, then we can definitely achieve more together. I digress. Having a cancer diagnosis meant that people were suddenly being so open about their love and respect for me. It was and is, a truly humbling experience. We must endeavour to do this for each other more, cancer diagnosis or not.
I challenge you to tell someone today, why you love and respect them.
The other outcome of posting the first blog was that because I used the # mesothelioma, I was “found” by Mavis Nye. I would like to call her “Mesothelioma Patient Advocate Extraordinaire”. She contacted me to say hello, to see how I was doing, and link me in to her Facebook Groups. She was in contact with me a lot over those first few weeks to offer support. And what a difference it made. Peer support was something that was lacking when I was initially diagnosed, but from Mavis’ contact the whole Mesothelioma Community opened up for me. I was suddenly able to see that I wasn’t completely alone, that there were other “young people” out there, and other women. I also found hope.
Mavis linked me in with Liz Darlison, Mesothelioma Nurse Consultant, who invited me to speak at a conference in October. Bearing in mind that this was only February, I was rather incredulous that she had faith that I would not be dead by then!!! If she believed I would be alive in October, and be well enough to speak at a conference (those of you who know me, know that this is something I particularly enjoy)…. Then I could, and would, and DO believe it too.
So, this got me thinking about hope and how very very important it is. Nowhere along the lines had I been given any real reason to hope about the future, other than a discussion that immunotherapies seemed to be coming through and were offering an amazing response in some individuals. Also, there was a recognition that I was “me”, by Mr Papagiannopoulos. (I would like to point out here that “the future” when you have been diagnosed with mesothelioma takes on a very different meaning. We are grateful for every single day, week and month that goes by. Thinking and hoping about the future does generally not mean 20 years down the line… I wish it did!!)
As we all know by now, mesothelioma is an incurable illness with devastating statistics, but I felt very strongly that I would be one of the 43% alive at one year. I was a young person, still functioning pretty much normally, well… as normally as possible, with a new diagnosis of meso. I looked into the statistics a bit further and found that as a 42y old female, I was pretty much one in a million. http://www.cancerresearchuk.org/sites/default/files/cstream-node/cases_crude_mesotheli_I14.xls Nice huh. In some data from the US, I also noted that survival is longer in young people and in women. I offered this up to my oncologist, hoping to have a chat about his thoughts on prognosis, but no. He didn’t take the bait. (Not at that point anyway – we have since discussed this in a little more detail.)
I was interested to read in the book “When Breath Becomes Air”, written by a young doctor, Paul Kalanithi, who ultimately dies of lung cancer, that he often pressed his oncologist to discuss “Kaplan Meier survival curves”. She was very reluctant to do this to begin with. Understandably, clinicians are often very guarded in discussing prognosis in cancer patients, because it can be so variable. I know this having been on the “other side” as a clinician, it can be very challenging to maintain realism, but at the same time trying to support the patient.
However! Now as a patient…. I really wanted to see hope. I wanted to be given permission to determine to be in the 43%. (As I write this 9 months later, I wonder why I needed permission – I had made the decision anyway…..!)
Around the same time a friend of mine contacted me and asked if she could send me a book called “Love, Medicine and Miracles” written by Bernie S. Siegel, a surgeon in the US who set up the first group for Exceptional Cancer Patients. In this book he writes about hope, including what interested me, the concept of “false hope”. He says “….we adopted as our motto a sentence from the Simontons book: “In the face of uncertainty there is nothing wrong with hope”. Some doctors have advised patients to stay away from me, so as not to build up “false hope”. I say that in dealing with illness, there is no such thing in a patients mind. Hope is not statistical. It is physiological! The concepts of false hope and detached concern need to be discarded from the medical vocabulary. They are destructive for both doctor and patient.
Whenever I work with medical students or other physicians, I ask them for a definition of false hope. They always hem and haw, and fail to come up with one. I make it clear to them that for most physicians, “giving false hope” simply means telling a patient that they don’t have to behave like a statistic. If nine out of ten people with a certain disease are expected to die of it, supposedly you’re spreading “false hope” unless you tell all ten they’ll probably die. Instead, I say each person could be the one who survives, because all hope is real in a patients mind.”
I completely agree with this approach, but realise that it may need to be moderated a little depending upon where a patient is on their journey. Clinicians are actually quite good at assessing when a person is near the end of their life, but what we are not always good at, is acknowledging it, accepting it and communicating it to the patient and their loved ones. Hope does need to be tempered with reality, some times.
On a personal level, I have always had a particularly high level of determination. To me, being given hope was a reason for my determination and survival instinct to kick in. Hoping, believing, that I will be a survivor at one year…. surely this will only do good?
The reason my friend was moved to send me the book mentioned above, was because I had divulged to her that I had been visualising Rainbow Lego Ninjas removing my tumours. I know this may sound completely crazy, like completely crazy, and of course there is no way I would ever consider giving up tried and tested, evidence based medicine, for visualisation, but I was interested to read about Bernie Siegel’s experience working with visualisation in cancer patients. I didn’t consciously choose to do visualisations (although I did know something about the concept), they kind of came to me.
I had been doing some basic Pilates at home, and was in a kind of “relaxed zone”, thinking about my tumours. This was after the first cycle of chemo and I already felt some improvement in lung symptoms, so was feeling positive. I guess I had an advantage, as I could visualise for real what my lung looked like, having completed anatomy dissection as a medical student.
As I was looking at my lung, and pleura, a “Lego Ninja” appeared, next to some tumours, in fact two Lego Ninjas. One was definitely the leader and she removed her blue helmet, swishing her hair in the same way as Wyldstyle does in the Lego Movie. In fact, she had a similar appearance to Wyldstyle, apart from the fact that she had a blue Ninja mask and was wearing rainbow dungarees (of course). She said “Lets Do This!!” and showed me how she was destroying the tumours. I asked her to concentrate on the mediastinal disease, as this was the part that was worrying me most at the time.
It made me giggle: I couldn’t quite believe what was happening….! However, I decided not to worry about my state of mind, but to make use of the fact that these Ninjas had appeared to me, and focus upon them. I decided to devote some time to visualisation every day…… more than anything, because it helped me to regain some sense of control.
At the beginning, I saw a lot of them, and it was quite a treat to see how imaginative they were with their power tools!!! They ranged from circular saws (yes ouch), lawn mowers, tractors, bows and arrows, speedboats, abseiling down a bit near my diaphragm using a sword and more. The removed tumours turned into rainbow glitter dust. The second ninja seemed to help with the “clean up operations” and would pull out any remaining meso cells with a degree of precision, then polish things up when all the cells had been removed. When I last looked, they had also applied a green transparent coating to the areas where the meso was, to prevent it from coming back. (More recently, the Ninjas have been sitting in deckchairs next to, or swimming in a most beautiful deep blue/green lake containing shimmering fish of every colour…) Remarkable, what can go off in your head (and therefore body) if you just sit back, relax and let your mind do the work!!!!!
Or maybe I am just crazy…. 🙂
This post is dedicated to Mavis Nye – for giving me, and hundreds of other mesowarriers & their families, hope and support. Mavis has recently set up the Mavis Nye Foundation to raise money to further support patients, mesothelioma research and the medical community. http://www.mavisnyefoundation.com/ It is possible to donate through the site too if you feel moved to 🙂