Our story starts in April 2023. As I wrote about in my last post, It had been decided that I was deemed well enough recovered from my surgeries the summer before to restart treatment, although they didn’t want me to back on the Immunotherapy drug, as they weren’t entirely sure that that wasn’t the reason for all my complications following surgery for the obstruction. So it was decided to give a different Chemo a go. One called FOLFIRI
I was worried it would floor me, and as it turns out - IT DID!! I was abso-fucking-lutely ruined. vomiting on a comedic level Rik Mayall and Ade Edmondson would have been proud of and fatigued. I was tired, so very tired, and breathless after any kind of exertion. A call to the Velindre Treatment Helpline meant that my out of hours GP was called to bring me some much needed stronger anti sickness medication. So at 2 o’clock in the morning, I had a knock at the door and a packet of tablets rather unceremoniously thrown at me and the doctor scarpered. No hello, how are you? No quick eye ball to see if that was all I needed. Nothing. Looking back, I should have been admitted to a hospital then. But it wasn’t until a day later (still throwing up) when I had my pump disconnected that the fantastic nurses at Velindre actually did my obs (blood pressure, temp etc) that I was admitted to the ward for some serious rehydration from all the vomiting.
So up went the fluids, but they weren’t happy with a rattle in my lungs. I was wheeled off for a CT scan, which subsequently showed I had a clot in my heart. Quite a significant one. I was immediately transferred to the Heath Hospital in Cardiff to be checked over by the cardiology team there to see what needed to be done.
It was my first time in an ambulance and actually despite being a bit worried about the clot, I was excited to be having a go in a Banana Bus. However, as it turns out, it’s more like a Bone Shaker and we discovered I don’t travel well backwards. I got travel sick and started spewing again. I know, the glamour of it all!
I arrived at the A&E dept of The Heath and was met by David, and we waited for a space to open up for me. The only bed available was the resus room, so you know, I wasn’t freaking out at all. And then we waited, and waited, and waited a bit more for the on-call cardiologist to come and have a look at me.
He arrived, lovely chap, and advised that he was going to be doing an Echocardiogram - essentially an ultrasound of your heart. So, top up, bra off, boobs ooot and the man I’d never met before started probing me with a lubed up stick. Get your mind out of the gutter ya filthy animal! Turns out the best place to probe is under the left breast while you lie on your side. Now, as most of you know, I’m a woman with an ample bosom and it was while I was in this precarious position that another man poked his head round the door - his eyes damn near popped out of his head, “Oh, another doctor” I thought. So with boobs everywhere, me, David, and the cardiologist all glaring at him, the gentleman in question asks “Chicken or Beef?”. Chicken or Beef - what the actual?! Chicken or fucking Beef!! It dawned on me that it was the bloody catering minion asking me what I wanted for dinner, in the middle of a rather intimate examination. What’s next? Tea or Coffee during a smear test? Red or White half way through a colonoscopy? I was completely gobsmacked, the cardiologist was speechless and David was doing his best to control hysterical laughter.
He was back about 10 minutes later, dinner in hand. Unsure where to put it, let me remind you, we were in the RESUS room, he handed it to the consultant and left. The consultant, slightly stunned, rather politely asked if I wanted to eat it straight away and after I declined, boobs still oooot after all, he put it on the side and finished his examination.
Chicken. In case you were curious. I didn’t eat it.
And then I was put in a cupboard until a space opened up on a ward for me. 24hrs I was in this cupboard. It was a windowless room, just outside of the main A&E dept. There was a bed and a table. I suppose I was lucky I had a catheter and a stoma bag, because christ knows where the loos were? Then hurrah! A bed became available for me and the porters came to transfer me, on the bed, to the ward. Only, they went via the dungeons. A lift down to the lowest echelon of the hospital, down so far, that the floor was uneven concrete, the walls weren’t plastered, there were pipes and cables running across the ceiling, the pipes were dripping, there were industrial size bins lined up against the wall under the dripping pipes, and puddles forming by said bins. It was not sanitary in the least - they’re transporting sick people and you’re moving them through a post apocalyptic landscape! To further confirm my fears that the hospital had been transported from a 1970s Russia to the middle of Cardiff, when I did get to the ward in my side room, there was no electricity in the control panel. Marvellous.
The following day I was told I was very lucky to have not had a stroke and that they were starting me on Warfarin to help my body cope with the clot. Thinning the blood in order to allow the body to dissipate the clot on its own. And this is why I spent 2 weeks at the Heath, nearly missing Jack’s birthday (I was allowed home for the afternoon, I had to be back before evening meds), while they tried to get my INR levels above 2. Normal blood is 1 and the Warfarin thins your blood and we were aiming for 2. And of course, me being me, it was a pain in the arse. The most they got was 1.3. It was then they decided to repatriate me to the Royal Glam, my local hospital, and become their problem - of course under the guise of it being easier for me and my family, but not before the doctor on duty at the weekend and had never even seen me, let alone spoken to me, asked the nurse if I was ‘cheeking’ the tablets - yeh mate, because I want to stay longer than necessary in hospital away from my home comforts and family!
It also meant another ambulance ride - Woooooo! But not a Banana Bus, a regular transportation bus type thing. I was collected by the driver and taken away from the ward, through very quiet corridors and into the kind of alley your mother warned you about. Certain I was about to meet a Dickensian demise, we rounded a corner and thankfully there was the ambulance. I met my travel companions, No Toes Man and One Legged Crone. They eyed me with suspicion as I was able to ascend the ambulance without a wheelchair, had no outwardly visible ailment, and didn’t have their familiar aroma of stale tobacco - I’m a snob. Not sorry. However I’m not rude. I greeted them cheerfully and took my seat. We were told we were going to the Royal Glam via Ysbyty Cwm Rhondda (not a natural diversion, or at all on the way) to drop off a passenger first. WTF. This did not bode well. This transport was no smoother than the Bone Shaker that brought me to the Heath and I felt the familiar pangs of travel sickness. And then I was sick. Twice.
At the Royal Glam, my new cardiologist ordered another echocardiogram of my heart, as she couldn’t access the one previously done at the Heath and this worked in the best way to my advantage. The Clot… was gone! Now it wasn’t supposed to be, and it’s really weird for clots that big to appear and disappear so suddenly. The consultant was suspicious, so she ordered another one, this time with extra bubbles! Micro bubbles are injected into your bloodstream and the scan is done again - it helps to show things more clearly. The consultant, nurse and the person doing the scan were all staring at the screen and the clot seemed to have definitely dissipated. Still not quite believing her eyes, and by this time having found the original scans showing the clot, she sent the images off to her former professor who is a leading cardiac imaging expert for his opinion too, and he confirmed, yes there was a clot, and now there isn’t. Great news for me, in that I didn’t need Warfarin any more, so no more faffing around with INR levels, and I could go home! I’m not underplaying the seriousness of what had happened, technically I had a serious heart failure (eek), but recent scans have shown my heart is now in great shape and is testimony to how healthy it was before the clot. Thank goodness! Some actual positive news about my health and it was lovely to hear. I believe they’re still baffled at what happened and have no actual explanation about how it disappeared - it should have taken months. Elaine McCutcheon: Baffling the medical establishment since 2020.
A meeting was had with my oncologist and it was agreed that now I was on preventative medication for future clots that we would proceed cautiously with the FOLFIRI. So, Super Dooper anti sickness medication was prescribed, and the dose reduced to try and minimise side effects. While these measures meant that I wasn’t sick again on treatment, and didn’t get another clot, I was still side swiped by the regime. Tired, lethargic, all energy completely zapped. Treatment was every 2 weeks (sometimes delayed another week because my temperature was too high, or my blood levels were too low), so every other week-ish I was as useless as a chocolate teapot. My haemoglobin was in my boots, as was my blood pressure. Despite me having low blood pressure naturally, some of the heart meds I’m on to help maintain heart health are also used to lower blood pressure - yeh, so I wasn’t winning there! I was given iron and blood transfusions and my GP and cardiologist came up with a plan on how I could safely take the medication I needed and also reduced the doses.
Here’s the kicker though, scans after 4 infusions showed that the tumour had actually grown during that time. Shit. That treatment was stopped.
Turns out, my tumour is chemo resistant. Shit. There are more chemo options available, but they’re similar to the one I’ve just had and the oncologist is pretty sure they won’t work. Shit, SHIT! Surgery is still not an option. Shit Shit, SHIT! There is one option - Ok, I’m listening - it might be best for the cancer, but not the best for you. SSSSHHHHHIIIIIIIIITTTTTTT!
I’ve previously been on an immunotherapy drug called Nivolumab, which did control and contain my tumour happily for 18 months before I got the blockage that resulted in surgery last year. You know, the one where all the brown stuff hit the fan and I was hospitalised for 7 weeks. Anyway, they were reluctant to put me back on it because they couldn’t be sure that it wasn’t that drug which caused the complications. Well, they were thinking about it again. There’s a 2 year licence for the drug to be used and I still had 6 months to be able to have it. The only teeny tiny drawback is that while they were pretty sure it will probably work on controlling the tumour again (nobody says anything with 100% certainty), it might not be the best for me, especially given that I still have 2 open wounds from the summer.
So going ahead with the treatment would not be without massive risk. Crikey Moses, if ‘massive risk’ was said once, it was said a hundred times. And it was my decision. The alternative would be to do nothing, and well, I don’t think that’s really an alternative. I will pretty much do anything, if it means that there is a chance for more time. So as no one appeared to have a magic wand, a genie with a spare wish, or a definite cure for cancer up their sleeve, I agreed to go ahead with the treatment.
And then it kind of went ok for a bit, obviously I had to have very difficult conversations and make sure i’s were dotted and t’s were crossed, but we did and then we carried on. I had the first infusion and I didn’t spontaneously combust into confetti so I thought, ‘ello, this could be ok.
However, haha, I’d had this niggling low grade temperature for a while, always a slight concern on infusion days, but it was put down to having open wounds and my body doing its thing fighting off localised infections. I was still safe to have treatment. Until one infusion day, when it wasn’t a low grade temperature, it was 38.5℃ and the sepsis protocol was activated. Brilliant. Fluid bags were put up and antibiotics were started. I was admitted to the ward at Velindre and there I stayed for 7 days while they got the temperature under control and then sent home with more antibiotics. Except the night after I got sent home, I started throwing up, the bad black-shit kind, and suspecting another blockage there was no messing around and I got taken to Royal Glam A&E by my mum. To be fair, I was seen relatively quickly and got sent for a CT scan to see what was going on. Mum had gone back to look after Jack, and David had managed to leave work and come and sit with me. Not me sitting in another resus room with a uniformed police officer looking like a total criminal! Except I was.
But, it wasn’t a blockage, nope, my tumour has decided to perforate, and there’s a collection of goo by it which is actually the most likely cause of all the infections and high temperatures I’ve been having. I was hooked up to more fluids and later sent up to the ward to start some more antibiotics. They started up the penicillin and I had an immediate reaction, crawling itchy skin, hives, shortness of breath - seriously I’m not even making this shit up. Bloody typical. I’ve been pumped so full of the stuff, that I’ve now developed an allergy to it. So, change of plan and I got to stay there for a couple of days. As we already know, my tumour is an awkward fucker and non operable, so it’s the same for the perforation, they’re also not able to drain ‘the collection’ with a needle, for fear of poking the wrong bit.
I got sent home again and told to keep an eye on my temperature. Which did behave for a whole week before I spiked a high temperature AGAIN FFS. So here I am, in Velindre, waiting for the drugs to work. I feel fine in myself, going between feeling a bit warm to freezing cold to feeling alright while the paracetamol is working. I’m reading a lot, doing puzzles, chatting to nurses whether they want me to or not, befriending old ladies, and writing about it all because it does make me feel a bit better. However I’m still raging about being totally mugged off with a fucking Vegan Meat Ragu last night for dinner when I was offered a Bolognase. I was expecting a meaty, rich, tomatoey dinner and got a fucking vegan travesty in return. Bastards.
p.s. the picture shows a lovely silver bracelet from a very dear friend, that says 'Fuck Cancer' in Morse Code
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