Chapter 20: Well, shit.

So when things can’t get any worse, turns out they really can. How one person can have such colossally awful bad luck is beyond me, but here I am.

The weekend before last we decided to take a last-minute trip to Devon to take advantage of the unexpected February sunshine, which was lovely, but in typical fashion included 1/4 of my days in A&E at Torbay Hospital. They were nowhere near as concerned as my local hospital would have been, which was very strange, but each NHS trust operates by different guidelines and who am I to tell them how to do their job.

Whilst away I started to notice some pain in my lower abdomen again, a pain I knew only too well which niggled at the back of my mind and took over most of my daily thoughts. When you know you just know. We arrived back home from Devon at 1am Wednesday morning, and after about 3 hours sleep I awoke feeling pretty awful and with a fever of 38.1, so off we went again to my local A&E. They admitted me for antibiotics (standard procedure) and planned a CT scan for the following day.

Friday morning we received the news that I knew was coming. This second attempt at chemotherapy has not been working. One of the consultants described it as each dose of drugs temporarily shrinking the tumours (enough for it to look like a ‘good response’ on a CT scan, as shown 6 weeks ago) but then the cancer growing back larger than before between each dose; to the point now where it has increased considerably and spread to my liver (and other places I don’t particularly want or need to know about).

So the question is what now?

Tomorrow I have a meeting at the QE in Birmingham to discuss and find out more about the new CAR-T therapy that I am now eligible for, having failed two lines of chemotherapy. It’s clear at this point that chemo is not going to work, which is just as well because they are running out of drugs to try on me! Up to and including this point I have had a total of 12 different drugs, across 3 different regimes thrown at me, and after nearly 12 months of chemotherapy, my body is slow to recover now. So slow. But this new treatment isn’t chemotherapy, it’s immunotherapy, so there is still hope.

I will do another update later on this week once I have a bit more information and I know a bit more of what the plan is, right now I have to think about dragging my cancer-ridden arse off the sofa to get ready for a meal tonight with my cancer sistas!

Once again, please keep your ‘I’m sorry’s and your ‘sympathies’ to yourself; they don’t help anything, especially not me!

Chapter 18: New year, same me

I have an absolute stinker of a cold, which I somehow managed to catch while in isolation in hospital on antibiotics… Someone explain that one to me, please… Let me tell you, having a cold while going through chemo is no fun task. My poor, weakened immune system is working overtime to try and shift this bugger and subsequently I feel like sh*t. And when I physically feel like sh*t my mental health takes a nosedive. It’s when the lurking background anxiety creeps a bit closer and starts breathing down my neck and the niggling doubts about my treatment start to multiply. That is why I have taken my laptop out and decided to attempt another blog post through my cold-foggy brain. Apologies if it’s a bit muddled but that’s what it’s like in my head currently.

A lot has happened in the past month. Christmas has been and gone (which feels like a million years ago now), it’s a brand new year (not exactly how I thought I’d see in 2019 but there we go) and I have a bit more clarity on what is happening next with my treatment. I have had 2 rounds of GDP, the new chemo I started at the end of November, had another line fitted (my 4th, this time a bard line), and had one attempt to harvest my own stem cells, unsuccessfully.

The new central line (choo choo 🚂 😂) is an absolute monster; like a hickman line BUT BIGGER. Prior to it being fitted (installed?? positioned??? I never know the right term…) I had a second PICC line but was told that in order to attempt to harvest my stem cells I would need a much bigger line with better access. Oh fun. Do you know what’s worse than having had one central line in your chest? Having had two. So a few weeks ago, I was back on the old G-CSF injections (at double the dose, such fun) to attempt to ‘mobilise’ stem cells from my bone marrow into my blood. It didn’t work. Wah wah wahhh.

Since then I have had a CT scan to see how well this new chemo has been working and the answer to that is pretty well, a ‘good response’ as my consultant put it, and the plan from now is pretty complicated, see flow chart below. What is this, Black Mirror Bandersnatch?! 😂

Chapter 17: Welcome back to neutropenia 👋

So this update is coming to you live from my cancer unit (oooh how exciting). They are playing Christmas songs today so I am happy! 🎅🏼🎄⭐️🎁 Thought I’d bring my laptop with me and try and be at least marginally productive rather than squinting at Youtube videos on my phone for hours, which is what I normally do. I’m in today for two bags of blood and a bag of platelets. I thought I might not need blood products as much as I did on my previous chemo regimen, but alas I was incorrect. I also thought (and hoped) that I might not be neutropenic this time but I am indeed back in neutropenia again. Sounds like a travel destination. Trust me, it’s not somewhere you want to visit. I feel like I’m now counting down the days until I get my first infection of the new chemo and end up back in hospital. I mean I really hope that it isn’t going to happen, but I had seven episodes of neutropenic sepsis over my first chemo regimen and so I’m not holding out too much hope for this time. We shall see, whatever happens, happens.

There was a lot of confusion between myself, my consultant and the staff at my unit as to what my management plan was; was my chemo going to be every three weeks? Every two weeks? It seemed like nobody knew. That has now been ironed out which is good; I don’t feel so unsure about what is happening to me and when. The plan is to deliver my chemo every two weeks if possible, rather than the standard three weeks, but that very much depends on my blood counts. Today (well, yesterday actually) should have been day one of my second round of chemo but all my counts have tanked so here I am for a top-up. I’m into double figures now for both blood and platelet transfusions and I still find it totally magical that you can take blood from one human and use it to top up another human. How great is science. This is another chance for me to say a massive thank you to all those who donate blood products, you really are saving lives!

In other exciting news, one of my closest and oldest friends, Emma, (24 years of friendship and counting) is going to be RUNNING THE BLOODY LONDON MARATHON!!!!!! She will be running for Bloodwise which is so amazing and exciting! She’s the fittest, most active person I know and she’s going to absolutely smash her training. If anyone fancies sponsoring her and therefore donating to the wonderful Bloodwise you can find her Just Giving page here.

We fund research to change the lives of people living with leukaemia, lymphoma, myeloma and other types of blood cancer. Help us find cures for all of them.
Since 1960, we’ve invested more than £500 million in research to save lives and improve the lives of people with leukaemia, lymphoma, myeloma and other blood cancers.
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Recreating our favourite photo of us 😂
Emma & Lucy through the ages