Let’s get you upto speed, shall we?
I’m 34 years old and last year I attended an A&E in London with back pain. They scanned me inside a machine that looked like a massive white doughnut, and then they told me I had (probably) stage 4 (later confirmed) cancer. To say I nearly fell off my chair is an understatement.
Since then me and my newlywed husband, the mighty SPL (that’s S____ P____ L______ to you, and SPeciaL to me) have been battling the day-to-day of how this news has pretty much completely changed our life plans. He is ace, I am amazing (;-)) and together, along with my amazing family (particularly Mum & big Bro) we make up the Cancer Fighting Team (c) – regardless of how this all turns out.
Some bulleted happenings *cue the catch up montage*
- 2016 November, diagnosis. Cancer in colon, lymph nodes, and liver.
- 2016 December, insertion of Portocath on the right side of my torso (this is a Hickman line, so that the drugs pump into me a bit easier).
- 2016 – 2017 – 6 blood transfusions, about 11 units of blood. Super anaemic. You might as well call me ‘powder’.
- 2017 January, confirmation from my London oncology team that I’m computer randomised and unfortunately put on the crappy side of a drugs trial I’ve put in for. Consequently, I don’t get to trial the new drugs, I get the standard present drugs.
- 2017 mid Jan, my portocath fails. It’s taken out and a new one is put in on the left side of my torso. One operation for the removal. One operation for the insertion.
- 2017 late Jan, chemo starts in hospital – spend the weekend at Barts in London. folfiri, irinotecan, 5FU.
- 2017 end Jan, I start to feel unwell. My temperature spikes, and I’m taken to hospital with some kind of infection, first to Royal London, who take me in overnight and then I’m transferred to Barts hospital. Barts keep me for a week, then decide I probably need emergency surgery at Royal London on my bowel, because the tumour is breaking it open…it’s where the infection is coming from, and then need to take out that section of colon. I’m transferred back to Royal London.
- 2017 early Feb – the colorectal surgeons at Royal London operate. They successfully take out the cancer in my colon and they don’t leave me with a stoma (I can still poo normally)! I have a horrible time in hospital with pain management, sleep, anxiety, and terrible food – however the surgeons and Drs at RLH are amazing. One of the surgeons visits me daily, brings me a sample size of perfume that I like, and gets me outta there for Valentine’s Day (after in total 3 weeks in hospital overall). She is my hero.
- 2017 late Feb – I’m taken off the trial, as I’m not on the ‘good side of it’ – which is good, as they can now add another string to my chemo package….
- 2017 late Feb onwards, I’m put onto folfiri, irinotecan, 5FU and also cetuximab. I also transfer to the Oxford Churchill for treatment, not because London is bad, but I just need to see green fields and low horizons for a while. Anxiety and depression have started to ingrain themselves, and I recuperate from chemo in Oxfordshire, in my childhood home.
- 2017 late Feb to mid May – 6 sessions of chemo and my liver function tests have started to improve. We take this as positive news, and prepare for the mid-way scan.
- 2017 mid May – the scan results are not good. The chemo cocktail isn’t working and some secondaries have grown. A huge clot has also appeared on my Hickman/portocath line, which means it will need to be taken out in another operation. I’m pulled from the chemo package and access to the costly cetuximab is now denied due to ‘efficacy’ – which essentially means saving efficiencies. Thanks, Jeremy Hunt. I’m also now onto daily injections (that I have to self-administer) to thin my blood, which are increased in dosage. Turns out cancer makes your blood super sticky. I imagine it’s like UHU in there.
- 2017 late May – an operation to remove the portacath (Hickman line) takes place and oncology put me onto a new chemo regime; ‘Capox’. This is oxalyplatin, taken via IV in my arm vein, and capecitabine tablets for two weeks. The side effects and neuropathy are clear and present. It’s serious poison this time.
- 2017 early June sees me ingest my first round of Capox. I ride the side-effects pony, have crazy pins and needles for two weeks, and then I’m cleared for a radiotherapy treatment called SIRT, which will target my liver. I’m to have the SIRT treatment in three parts; i) the work-up procedure, which blocks blood vessels so that the internal radiotherapy sticks by my liver and doesn’t damage other areas, ii) one lobe of my liver will be radiated on 11th July, iii) the other lobe of my liver will be radiated a few weeks after this date. The SIRT is intended to target the secondary cancer more directly and because my liver situation is precarious, they can’t do it all at once (as I understand it) for fear of giving me actual present liver failure. Strange times. I’m also off the chemo while this SIRT is going on, so we can only hope the SIRT works to keep the cancer at bay enough in this time. One positive is that I’m now in London the majority of the time; absences from SPL were hard in the early part of the year.
- 2017 – late June. SPL and I near the date for a holiday I booked last year. We have never needed a holiday more. My hair is nearly giving up the ghost, and soon it will be WIG-TIME, but for now I have just enough strands to still feel like I can venture out in public. I am also contacted by my London medical pshychologist (London cancer patients get this) inviting me back to her practice. Her arms are open and kind, and I’m definitely going to take her up on it.
Hey! We’re all caught up now. So come ride the cancer-coaster with me and I’ll tell you all the nitty-gritty. I promise it won’t all be the pits…I’m too funny for that and let’s be honest, no one likes too much misery, unless you’re seriously into your continental films.
Here’s a picture of me shortly before we attended a wedding last weekend… see… I don’t look that miserable…