It’s a year today since I was diagnosed with stage IV cancer. One of the worst days of my life (the other being a couple of weeks later when I was told it was incurable). It’s been a year of intense emotion; frustration, fear, anger, sadness, pre-emptive grieving, but also one with moments of intense joy and gratitude. There’s nothing like a terminal diagnosis to make you appreciate life’s special moments! And I will never stop being grateful for the wonderful life I have in so many ways.
But the past few weeks have been very difficult, and yesterday was another day of bad news. I’ve been on a brutal treatment regime for the past three months. Each round has had more severe side effects, including feet so sore I couldn’t walk at times, and mouth sores so bad I couldn’t eat or speak, and that resulted in a trip to A&E (obviously at a weekend). Whilst there have been some good, truly wonderful even, days over the summer, and we’ve continued to try to make the most of life, the quality of life balance has tipped in the wrong direction recently. Before I saw my oncologist yesterday, I’d already decided I was going to ask for a break from chemo. Regardless of the risks, my body needs a break from the toxins being pumped into it.
However, on the occasional days I haven’t been suffering chemo side effects, I’ve felt well. I’ve had no more fluid build ups, and whilst extremely tired as my iron levels are very low (another chemo side effect), I’ve felt reasonably well and have been doing more regular yoga, as well as going to clinics at college (I have now completed and passed all of the theory side of my qualification). So, I was very hopeful that the targeted drug, herceptin, that we fought hard to get, was working well. Sadly it’s not been the case and I have not responded positively to either the herceptin or the latest chemo. My latest scan results showed that my liver tumours have grown significantly and there are more new ones (the rest of the cancer looks stable). The liver tumours are now getting to the size that liver failure, which would be fatal, is a genuine risk. No one can say how long I have to live, but we do know that as nothing is keeping the tumours in check, things could go downhill very quickly at any time.
So I have a couple of choices: come off all treatment and just enjoy the time I have left, hopefully for a little while, feeling well; or consider a different drug, Regorafenib, that we would need to fund privately (at fairly vast expense). This is another targeted drug (not chemo) and is something called a multi kinase inhibitor which helps block cancer growth, and stop the cancer cells growing blood vessels they need. It’s not available on the NHS as is not proven to be effective enough compared to its cost. The chance of it working is fairly slim, but we will get a private second opinion and decide if it is worth trying for a couple of months. It also has side effects similar to chemo, so again I need to consider quality of life.
I will also continue to work with my nutritionist and functional medicine doctor to use complementary medicine to support my body, and may explore a couple more complementary options to add to my protocol. I would like to politely ask at this point, that you please don’t send me any suggestions of other treatments. Whilst I know these are well meant, I have my own ways of researching what I wish to pursue, and given I’ve been training for the past three years as a complementary medicine practitioner, I am pretty well informed.
For now, I will focus on the fact that today I feel okay, today I have plenty in my life to be grateful for, today I am alive. The near future will be about spending time with Oscar and Brian, and with family and friends. I want to work on the book I am writing which is a combination of my story, lessons I’ve learnt from cancer and from my nutritionist training about living a happy and healthy life, and a selection of my healthy recipes. I’d like it to be a little legacy to leave for Oscar so he gets a good snapshot into who I am and the things important to me. I don’t know if I will continue with college; long term goals seem irrelevant at this stage, and right now we have lots of decisions to make, so I just need to take them one at a time. I am sad and scared, but I have amazing support around me, and I will continue to make the most of every day I have left of this life.