When you are well, your hopes wishes and plans can span the world. But as life diminishes through illness or other circumstances, those hopes and plans reduce in scale to suit your limitations. Two years ago, I felt the world lay at my feet to explore with gusto in every way I wished: I had finished my treatment for primary breast cancer and I was getting my life back on track getting fit and healthy, jettisoning all those things that didn’t make me happy, concentrating on all the things that did. It was a wonderful time, I learnt so much about myself and picked up new skills, explored new creative avenues.
Then in April this year it all fell apart. The cancer had come back. I was told I was unlucky to have had this type of cancer (Triple Negative Breast Cancer) in the first place (it is not common and I have no genetic predisposition to it as there is no hereditary factor working here), I was unlucky to have it come back. I was unlucky for it to come straight back as metastases in my liver and lungs rather than a simple tumour near the site of the first one. I was unlucky for it to be so aggressive and fast growing. I was unlucky for it to be so resistant to chemotherapy (the tumours mutated as chemo went ahead and began not to respond). I was unlucky that the trial drug which was hailed as the best chance for this type of cancer had no effect ultimately on tumour reduction despite our early hopes.
Despite all that “unluckiness” I still feel lucky and count my blessings. I have had a wonderful life. I have a fantastic family, an amazing set of friends and neighbours, and a hugely supportive wider circle of people via the internet. You cannot know how much your support has meant to me over these last few years, even if I don’t know you in person. I feel uplifted by you, and who would not be thankful for that.
Cutting to the chase. There will be no further treatment because the best they can offer me now only has a 10% chance of having any effect at all, either good or bad, and carries side effects too. The cancer is too advanced to embark on any untested treatments etc. I want my final days to be filled with feeling as good as I can so I can enjoy being with those I love and doing the things I love.
The best guess is 6 – 8 weeks, but the doctors are not prophets, they can only go on their experience and knowledge, so it may be less or it may be more. My care has been undertaken by an internationally respected professor and expert who works at one of the UK’s leading centres for excellence in this field, so I can ask for no more than that. I trust him and his team and could not have wished for better care.
So now I am at the point of trying to accept the situation. To help me and my family to do that I would really appreciate it if you didn’t try and suggest I get second opinions or try this or that, although I fully understand that it is all very well meant. My choice has been made, and that is to opt for the best palliative care provided in the community so I can stay at home and not have to end my days in hospital. In this I am supported by my family and friends.
Sometimes people say “you can still fight it”, “be strong”, “don’t give up” etc. If you turn that on it’s head, does it mean that if I don’t win my “battle” I am in some way weak, didn’t try hard enough, or gave up too soon? I don’ think you mean that, you mean to be supportive. But cancer is not something you can fight. It is your own body mutating, and there is nothing to fight. All you can do is endure the treatment as best as you can.
What does “be strong” mean? If you have not endured the worst that chemotherapy has to offer, then I suggest that despite all the positive wishes behind the comment, it is actually ill judged. You only have the strength to endure. People respond differently to the multitude of treatments, their disease is in different stages of progression, different locations, severity and aggressiveness. We are all different, and some of us are lucky because our initial treatment works, and others are not.
There comes a point when you have to make a decision. Do you carry on enduring something that ruins the quality of whatever life you have left, or do you accept that we must all die at some point and you want to make the most of your remaining days instead of running around clutching at straws? This choice is not one that can be made for you, it is entirely personal. Only you know what is right for you and at what point you need to make it. My decision was made as soon as we had a clear steer on a realistic life expectancy and the fact that the cancer had mutated quickly and out of the reach of chemotherapy and all the other treatments. And yes, I did go on a trial, read up about natural things to support my treatment etc. But overriding it all is a clear wish for as much joy in my life as I can get, and that cannot happen if I am holding out false hope of some late cure. My way is to face it all square on, evaluate everything that was told to me, ask as many questions as I needed to get the picture in Ultra HD It makes acceptance so much easier.
Now don’t get me wrong, the news was devastating, and we have all been torn apart by it. But having made my decision, we can now concentrate on lots of practical things to make my last days as joyful and pain free as possible. To plan and help organise things for my family so they don’t have to make hard decisions whilst filled with grief. To make it easier for my lovely husband to sort out the incredible amount of stuff I have in the studio, my online presence, and all those other things that are distressing to do at such a time of mourning. To make sure I see everyone I want to see and say my farewells. To include people in the Celebration of my life, and working out what we all want to do. The Celebration will be for all those who mourn me, so it should reflect their memories and view of me as a wife, mother, friend etc. I don’t want it to be driven by me, I won’t be there, it’s not for me, it is for them.
So in this, like in many things, I count myself lucky to have the time to “put my affairs in order” as they say. I wouldn’t have been able to that if I had been run over by a bus!
I am also lucky because I get to spend more time with my close family than I would perhaps have done. I am lucky because I get to see just how wonderful, caring, loving and supportive people are. It really does focus your view of life down to just the most essential and emotionally important things.
Just to be clear, I am not about to curl up my toes and and die right now, but I do want to draw a line in the sand and tell you all clearly just how things stand. Being open and honest and upfront about it will, I hope make things easier for everyone. Any future posts after this will not be about my cancer. It is too gloomy a subject. Let’s stick to thinking of all the good things in life, the good memories, the happy times. After all that is how I want you to remember me: not when I am ill, wearing my funky hats, but when I was well, and full of energy, teaching and demonstrating, laughing and sharing the good times and the weird ones!
So to finish this long post, I thought you might like to see my Internet Icons (a little bit of the weird in me!) for the last time. They will not be going on display at the NEC in March as the piece sold at the Steel Rooms in Brigg when our exhibition I Exist in Two Places was on during the summer.
I will Exist In Two Places, Here And Where You Are – in the winds and under the cherry tree, but also in the memories of all those whose lives I have touched over the years.
With much love and gratitude to you all.