I'm Jojogingerhead, a 31 year old artist & musician based in Brighton (UK) satirically documenting the highs and lows of my secondary triple negative breast cancer diagnosis. Trying to see the light in a dark and scary situation without using the words fight, battle, journey or survivor.
It’s been a difficult few weeks in cancerland. I have been suffering with terrible abdominal pain and ended up in A&E twice in the last week. I’ve been poked and prodded and to be honest, I thought it was the beginning of the end for me. It turns out that all the chemo drugs I’m on are playing havoc with my digestive system. I need a good detox and clear out and hopefully in time the pain should subside. It has definitely been a wake up call to implement a super healthy diet and stop eating so much crap that I’ve been stuffing myself with recently.
The A&E visits did result in an impromptu visit from my lovely oncologist who put my mind at rest that the pain was nothing sinister. They also answered a ton of questions I had been saving for them and gave me the results of my recent liver biopsy. It has come back as oestrogen and progesterone negative and we’re still awaiting for the HER2 status. This means that it’s likely I am triple negative in my liver (the same as my breast) and therefore less treatment options available. I suspected this would be the case though. A few more things came of the impromptu oncologist appointment. I am to be given a CT scan to my head as I’ve been worrying about headaches I’ve been getting recently but they could just be another pleasant side effect from all the drugs. I’m being taken off the steroids (they give them to help with nausea). This is great as they give me a big fat moon face and make me feel like I’ve been smoking crack, this should help with weight loss and insomnia too. There are trials for triple negative breast cancer patients coming up at the Marsden which might be an option for me after I finish 6 to 8 chemo cycles of Eribulin. They mentioned radiofrequency ablation for my liver mets which is a targeted radiotherapy that will hopefully blast some of the larger tumours. I also enquired about SIRT which is a more pioneering treatment but I’m not sure if it will be available to me on the NHS. It could be a private option using the money that my lovely amazing friends and supporters have donated via my Go Fund Me page.
One thing I have come to realise is that having cancer is more than full time job, it completely takes over every aspect of your life. I’ve always felt the point of my life is to create whether that be art or music but now that has been overshadowed by the big C which I find incredibly frustrating and upsetting. It’s a constant effort to try and prolong my life in between spells of feeling unwell but it also gives me the drive and determination to regain some of my life back and get my creative projects back on track. I struggle daily seeing everyone else around me getting on with their normal lives whilst I’m trapped in this limbo from hell that will only end when I die. I feel guilty complaining as I talk to so many women with this disease whose health is worse than mine. Every time I lose a member of my online community it makes me so angry that women are suffering and losing their lives way too young. It makes me determined to find new treatments, research alternative therapies and share this information with those that need it. I hope to update my website with all of this information once I have compiled it into some sort of easy to read resource, at moment it’s scattered across my laptop in a very disorganised fashion!
During my time writhing around in pain in bed, I watched an awesome documentary called Cancer: The Emperor of All Maladies (using Hola so I could stream for free from the US). It was based on the Pulitzer Prize winning book by Siddhartha Mukherjee.
“a magnificent, profoundly humane “biography” of cancer—from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it to a radical new understanding of its essence.”
I highly recommend this documentary to anyone with an interest in cancer. It was hard going in places but I was left feeling hopeful by the end where it featured news of pioneering treatments. Episode 2 featured a breast cancer doctor who was diagnosed herself and followed her through treatment.
So this morning I’ve had to cancel a fishing trip and a mini break that I was really looking forward to because of the abdominal pain. I can only hope that it buggers off before my surprise birthday party next Friday (nosey me found out about it already)! I will leave you with a photo I took of Brighton beach on Thursday, I managed to catch a few rays after being in A&E all day. To feel the sun on my face and hear the screech of the gulls made me feel like I was actually living rather than being in limbo. Then I drank 2 large glasses of wine, promptly tripped over whilst trying to walk and text at the same time and twisted my ankle, another pain to add to my list!