On Monday 31st October, I was back on the chemo ward for session two of cycle 6. Everything went to plan, and as is becoming routine now, I needed IV magnesium. I was lucky to have a lot of company this week, with my friends Rosie, Chloe and Sophie, who all gave up their lunch breaks to visit me on the ward. They kept me smiling and laughing the whole time. It reminded me just how lucky I am because I have the most amazing friends by my side. John Milton Hay, an American statesman and official, once said, ‘Friends are the sunshine of life,’ and these words ring true to me when I think about all of my incredible friends.
I will be back at the Marsden this week for my ‘Look Good Feel Better’ session (check last week’s blog for more information on this). I’m also going to need another blood test this week to double check my haemoglobin level, which is dropping. So it might mean another blood transfusion. It’s strange to think back to how I felt when I was told I needed my first transfusion, as these have become such a routine part of my treatment now, that I don’t worry in the slightest!
As I might be having another blood transfusion, I wanted to use this an opportunity to remind everybody about an amazing charity called the ‘Joely Bear Appeal.’ They organise and run blood drives in North London. On 27th November, they will be running two drives: one at Edgware Community Hospital (8:20am – 16:30pm) and the other at Borehamwood & Elstree Synagogue (9:15am – 12:15am & 14:00pm – 16:30pm). Check out http://www.joelybear.org.uk/2016_11_Mitzvah_Day.html for further information.
As I have mentioned previously, I have started to become more anxious and worried about the future, and what might happen in terms of my health. I know that part of this is because my weekly chemo is coming to an end, and I’ll now be moving to a maintenance treatment that will happen every three weeks. The thought of not being at the hospital each week feels scary because it has become like a safety blanket for me. This sense of security is a testament to everybody there who is looking after me and helping me to get better.
I know that I’m going to find it hard to adjust to not getting my tumour markers results weekly. Getting these always and makes me feel reassured that the treatment is working. I know that I will have moments between my three weekly sessions where I wonder if everything it still going to plan. It’s a worry that I’m sure everyone who is fighting ‘Cyril’ feels when their treatment pattern changes. I am always reminded that my medical team at the Marsden is always there for me, and that if I ever have a worry, concern or a problem all I have to do is ask. They want to support you in getting back to your regular routines, being safe in the knowledge that they aren’t going anywhere.
I also know that I have to find ways to cope with the thoughts and worries that I am having now, and which I know that I’ll continue to have throughout my maintenance treatment, and beyond. It is a case of trial and error to find the things that work. Some things that I have tried haven’t worked as well as I’d hoped. For example, allowing myself to notice when I’m having a worrying thought, to acknowledge it and then and visualize it going away. Although this mindfulness technique is helpful, it’s something that I do find challenging, because I find it really hard to ‘let go’ of the thoughts. However, for me, a better way of being able to ‘let go’ of them seems to be through writing. Starting to write when I was diagnosed with ‘Cyril’ helped me to deal with the shock of the diagnosis and the treatment I needed to have. I don’t think that I realised just how helpful writing could be. It has allowed me to clear my head when it sometimes feels like it is going to explode with thoughts or worries.
You may be wondering about the title of this blog… After my surgery, my sister’s friend got me a beautiful book. The book has letters that you write to your future self, seal up and open whenever you want in the future. It now seems like a perfect time to start using it and something I feel will be helpful, both now and in the future. Writing about my goals, hopes, fears and worries in these letters allows me to express what I’m thinking now. Opening them in the future will allow me to look back on this journey at a time when I’m in a different place; psychologically and emotionally. Like I said already, it is going to be trial and error in terms of finding things that help me cope with my worries about the future and the uncertainties about my health. I know that the things that help me might change at different points depending on what I’m going through.
In life, we all have to learn to deal with uncertainty at different points. I think the author Jaeda DeWalt describes this perfectly:
“Learning to navigate the unpredictable terrain of life is an essential skill to develop. We can’t live a happy life if we are unwilling to pave the path that will lead to our personal fulfilment and destiny. Learning to sit comfortably in the seat of uncertainty is challenging, but equally rewarding, because discovery is what waits just underneath the surface of that uncertainty and that gives us the chance to become fearless explorers, of our own lives.”
In my life there have been numerous times when I have sat in that ‘seat of uncertainty,’ and coming through those experiences was indeed rewarding. The greatest uncertainty that I have ever encountered was being told that I carry the BRCA 1 mutation and then being diagnosed with ‘Cyril’. In this period of my life ‘learning to sit comfortably in the seat of uncertainty’ is, as DeWalt says, and continues to be, challenging. I know that it will continue to challenge me as my treatment routine becomes less and I get back into the other aspects of my life. It will mean that I need to keep in mind the things that I find help me to cope and also find new coping strategies, so that I can enjoy getting back to some great opportunities. I have a wonderful job to get back to, a Masters degree to complete, which will be followed by a third graduation ceremony (the satisfaction of that being that I will be the sibling to don our father’s wall with three graduation photos!), as well as new opportunities in life that I don’t even know of yet.
So whilst I worry about chemo ending, treatment only every three weeks, and my future health, I must keep reminding myself that there are so many good things to come… And that’s why I think it’s a good time to start writing these letters to my future self, and see if this is an effective coping mechanism to help me to deal with the uncertainties that I am facing.