Man alive. I’d say it’s been a rollercoaster (text book cancer lingo) but it’s actually been a lift in a mineshaft - rapid descent, no frills, no seatbelts and increasing ever darkness. I mean obviously I’ve never been down a mineshaft but what I’m saying is; it’s been a fucking relentless barrage of crappy news since July.
I started getting more symptoms in July - right foot lost more function and sensation. Scans showed progression (once I’d had sought a second opinion as the local hospital interpreted my scan as “fine”). We upped my dose of chemo which bought a new wave of more intense side effucks. However, the plan was always to eke out the drug I’ve been on. There aren’t multiple lines of treatment for my cancer. We have to max out what there is currently available.
I ended up being admitted to hospital in October as a result of biblical sickness and diarrhoea. I became totally dehydrated with calcium and magnesium in my boots. There was a brief and terrifying discussion about whether I was septic. Turns out I wasn’t but that freaked the bejesus out of the Wingman. So three nights in hospital (in a side room cos of the shits). I’m going to be very frank here so sorry if you don’t like poo chat. My diarrhoea was so bad I was wearing peach coloured incontinence pants. A friend bought me a huge selection of bum creams and non NHS poo roll. Plus the peach shit pants. That is friendship and insight which I will treasure forever. Weird! It was also somewhat tricky when I was wired to a drip on either side (calcium and magnesium infusions) plus ECG heart monitors stuck all over me to make a quick exit to the loo. I was pinned down in a crucifix position and let me tell you, it doesn’t not end well. Overall I had really really good care but the nurses are so overworked that getting the basics like a bed change take way too long. Lying in your own faeces is the most debasing feeling. I just feel lucky that I can articulate my needs and I can be persistent. I just kept pressing that buzzer. Annoying but necessary. The elderly or the sicker can’t make a fuss and they must lie there for even longer. It’s utterly heartbreaking for these nurses who went into their profession to care for people.
So anyway, despite increased dose, tumour markers kept increasing and scans in December showed new areas of cancer. Main things to note are two spots in my liver which is a bit of a game changer. Previously my disease has only been in my bones, soft tissue mets change the prognosis in an unfavourable way. However, I was half expecting the news about the liver as there was a query there in the summer scans.
Unfortunately, after new year, I woke up with a numb right side of my chops. Went to the GP (same day appointment please note). Never met this guy before but fortunately he had a quick scan thru my encyclopaedia Brittanica of notes and saw a line that referred to a potential met/tumour in my jaw. In my fucking face. RUDE. So this is how I heard about this bit of progression. I was utterly gutted. I shouldn’t be hearing information like this from a GP. It also turns out there is a tumour that’s popped up at the very top of my spine/base of skull (clivus for the medically minded of you). This can affect motor skills in my face and my eyesite. So yay-nothing significant then. At this point we don’t know whether is the skull met or the jaw met that’s causing symptoms. However, it doesn’t really change the plan.
And (big reveal) here is the cunning plan. There is now a second line treatment for my very rare cancer. This treatment wasn’t available 4 years ago and it’s still not available on the NHS. It’s pending a NICE review. So we basically had many many loops, hurdles, jumps, brick walls to navigate to access this drug. We have applied on compassionate grounds direct to drug company (ie: if the patient doesn’t get the drug, she will die. And you get to have her data if you ask her nicely. Seemed a fair trade!) Finally got the drugs in my sweaty little hands yesterday. I even resorted to calling the hospital pharmacy to check the drug was in stock. Sounds like a quick call. Nope it took over 200 plus calls/redials to eventually speak to someone. Yes I am that patient. No great surprise though. I am merely redeploying my skills from a work environment to a staying alive environment. It's a good motivator and helps me care less about being nice, popular or not a pain in the area. The fact it took nearly an hour and a half for someone to be free to answer the phone is justvanother example of a system that’s more than creaking at the seams.
I took my first tablet last night. It felt incredibly emotional, strangely. Or perhaps not strange at all. So I now have to hope that these tablets work. If not, I enter a very grey, very uncertain future. There isn’t really much more out there at the moment. So it’s got to work or I will probably die pretty quickly. Putting the Xmas decs away this year was hard. For the first time really, I wondered whether I’d ever see them again. I’m trying to live in the moment but it’s inevitable these annual milestones shape my thoughts, even if I don’t want them too.
The plan is full on systematic treatment in the form of this new drug, catchily named Cabozantinib. I hope it knocks back all the tumours that are symptomatic so I don’t need any additional intervention such a more radiotherapy. I would like to avoid that to my face or head!! When I started my previous drugs, I was on a shittonne of horse tranquillisers for pain. Within 4 weeks I was back to the occasional paracetamol. These drugs are powerful and work astoundingly fast. Whilst I am realistic enough to know that because I have more cancer in my body, I might not get such a radical result, but a reduction in my face pain and stability in the tumour that affects my mobility would be a win in my book. Ideally it would nuke the liver mets too. They aren’t causing my any bother (yet) but I’d rather they weren’t there. What was really interesting was Wizard of Onc showing me scans from 2018 alongside my most recent scans. This showed that yes, lots of new cancer has popped up, but there are also areas that have buggered off and died. It’s helped me conclude that, as much as I have an almost pathological need to know everything, maybe that’s not possible as things change all the time. Perhaps just focussing on the areas which cause me issues is all I can realistically do?
It’s been a really tough 6 months (esp as I had a return of the shits over Xmas and new year and felt horrific again. The peach pants made an unwelcome return). But there have been so many lovely highlights: seeing Wakey start senior school and smash it. She’s an absolutely incredible child. I have enormous respect and admiration for her diligence, her resilience, her sense of self. We saw the women win the Euros, lovely hols in the New Forest, the day to day hubbub of raising two brilliant kids, enjoying time with my wingman and watching him grow a new business (if you need an accountant, personal or for your business, then he’s just fab).
With some encouragement from my brother from another mother, who asked me if I’d done everything I need and want to do (brutal question but we all need someone who can ask these things). Not the world cruise type stuff more sorting my will (yes still not done that. Knob but it's inhand. I promise.), cards for the children’s birthdays, gifts for milestone birthdays and events. Very very hard to consider but another wonderful friend has reframed it as sort of an extension of the kids baby books. I’m trying to make it a positive more joyful experience rather than acknowledging I’m potentially circling the drain.
I feel weirdly content, busy doing not very much. I’ve taken up crocheting which, thanks to my ADHD brain, I will do relentlessly for a few weeks and then never do again but that’s ok. I’m learning to accept these things about myself. It’s very liberating and empowering and a welcome side effuck of living with the Sword of Damocles over my head. Cheaper than therapy but possibly less sustainable!
I have hope in a tiny little white tablet; the product of millions of pounds and years of research. If you ever feel like giving to a cancer charity, find one that funds research. These are the people that genuinely prolong and save lives.
As always, thanks for getting to the bottom of my diatribe. I hope it’s made you smile as well as sympathetise.
Happy New Year. Here’s to 2024. Please.