Chapter 21: What the floopedy doop is CAR-T therapy?!

I should definitely preface this blog by saying that I’m currently on extremely strong painkillers (they’re a controlled substance 😂!) and so there’s a big chance that some of this might not make much sense. To say that the painkillers make me drowsy is the understatement of the year! 😵 I will try my best to be coherent.

This week has been busy, busy, as usual. Never a dull day in my life. Monday was the first appointment in London at the UCLH Macmillan Cancer Centre, which is the day unit for UCLH. It was another world compared to my small-town local hospital; a six-floored, friendly giant that welcomed me in with open arms as if I had been going there all along.

We met with one of the haem team (love saying that 🤣), a lovely consultant called Maeve O’Reilly with a beautifully lilting, Irish accent. She gave us all the information we could possibly need about the CAR-T therapy. Here is a link to a good article by Lymphoma Action that goes into a bit more detail, but I will give a brief overview of what the flippedy heck this CAR-T I keep talking about is.

Everybody creates T cells, which are one type of the body’s immune cells (lymphocytes). They help to fight infections. CAR-T therapy involves ‘harvesting’ my T cells (a slow, boring and painless process, similar to when I had my stem cells collected) and sending them off on their travels to the lab in California. This is where the magic starts. My cells will be genetically modified and given an extra receptor (a Chimeric Antigen Receptor – CAR), which allows them to recognise a protein on the lymphoma cells. They will then be reproduced until they have enough to treat my lymphoma. They arrive in Cali as T cells and they leave as magical new CAR-T cells. This whole process take six to eight weeks, after which they are sent back to the UK and I have them back as a transfusion, the ‘therapy’.

Credit Bloodwise

We left London with a schedule. I was to return Thursday this week (today as I write) for the cell harvest, but in classic Lucy style things have gone a bit tits up since then. Tuesday lunchtime I came in for my weekly blood test, and threw a fever while I was there 🙄 Luckily I knew I was not neutropenic; they’d done every blood test under the sun on Monday at UCLH in preparation for the upcoming treatment, and so while it wasn’t full panic stations, it was still mild panic stations. We don’t want to risk contaminated cells being collected if I do have a slight infection brewing somewhere. So lucky me I was admitted Tuesday night and started on IV antibiotics just in case.

Yesterday was a lot of backwards and forwards between my consultants here and the team over at UCLH, as to whether to postpone the harvest for Monday, just so we can give me IV antibiotics until then and are therefore more likely to have knocked any bugs on the head, and ultimately that’s what was decided. Disappointing for me really, even though I know it’s not worth the risk of contaminated cells, which would set us back a further two weeks or so which I cannot afford to wait.

We’re currently doing nothing to treat the lymphoma; we can’t until my cells have been harvested on Monday, we need my body in optimal condition, so it’s been allowed to grow unchecked over the past ten days since I tapered off the steroids, and subsequently my abdomen is so distended and tight; I could quite easily pass for four or five months pregnant. It is utter agony, and extremely unnerving to know that it has free reign of my body. Not for long though, pesky lymphoma. The minute the cell collection is complete on Monday they will be jamming a handful of steroids down my throat, and transferring me back to UHCW (where I had my first chemo regime – I have missed the staff on the ward so much and cannot wait to see them 😁!) so that I can have some chemo to try and bring things under control a bit over the six to eight weeks we wait for my cells to come back. I don’t quite know how, but there are still a small handful of chemo drugs that I haven’t had yet, we are hoping that it’ll be these that at least have some effect on the lymphoma. They have to be very careful with doses now for me though; I’ve had so much chemo and so many different drugs up to this point and the cumulative effect could be a slight worry in terms of future side effects, but as always I trust my team both here and in London with my life! (literally).

I think that’s everything for now really; someone get this girl some more oxycodone!

Me in ten minutes time…
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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 19: Time to stem cell-ebrate

I have just had some great news 😄 I’m talking crying-with-happiness good news.

Two weeks ago we attempted to harvest my stem cells and it was a very disappointing fail. We did everything right; injections to mobilise them from my bone marrow into my blood (and the excruciating bone pain that the injections cause – imagine that your whole skeleton is throbbing on every heartbeat 😬😖) but for no apparent reason it just didn’t work. It was really difficult to not be disheartened and I was convinced that there was no reason why it would suddenly work if tried again, but they wanted to anyway.

I’m back in hospital (again). I had a whole 3 days at home where we planned and then booked a very last minute trip to Bournemouth (which I subsequently missed 😑). Turns out this bastard of a cold is something called Respiratory Syncytial Virus and even though they know that it’s almost completely certain that that’s all that I have currently, I have to stay in and on antibiotics anyway just so we don’t risk my precious stem cells being disregarded due to contamination with something bacterial.

Three days ago I started the daily G-CSF injections again (double the normal dose, ouch) and today they did the special blood test to see if it has worked and it has!!! I just got the great news. So tomorrow I get to experience the wonders of modern medicine as my blood will be taken out of my body (not all at once), spun and filtered to removed those glorious stem cells and then put back into me. Let me say, it’s something I thought I’d ever be excited about but I bloody am!

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.

LOOK AT THAT BEAST

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?! 😂

Everyone clear? No, me neither…

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.

At any one time we have over £90 million invested in research, and we’re currently funding over 1,000 researchers and clinicians across more than 200 active research projects.

Bloodwise

Chapter 16: The worst news…

You probably think that there is nothing worse than being diagnosed with cancer, and if you had asked me a few weeks ago I would have agreed with you, however this past week has taught me otherwise. What’s worse than being told you have cancer you ask? Being told that your cancer hasn’t responded to chemotherapy. Yep. And let me tell you it doesn’t get any easier to hear these kind of things. 

Let me backtrack a bit to explain things. Halfway through my chemo, I had a CT scan to check how things were going (this is common practice) and it showed a great response. Just a small amount of tissue left in my chest, which they had assumed and hoped was scar tissue, and practically no tissue left in my abdomen/pelvis. Second half of chemo went ahead like normal and with my blood levels all within ‘normal’ range and me as healthy as can be expected, after my last chemo on the 25th of October I was sort of discharged from my consultant (not fully of course, but no need for weekly checkups), again this is all standard procedure.

Fast forward to a week ago, and I started having some abdominal pain and discomfort again. Immediately, I knew that it was the lymphoma; call it instinct or intuition, or maybe just common sense. I mean what else was it likely to be? I left it just over a week to see if it went away, I thought perhaps there’s the tiniest outside chance that it’s something I’ve eaten or a pulled muscle, but it didn’t and so Wednesday I went to see my GP and things moved pretty fast from that point. My consultant saw me later that day through A&E, admitted me to hospital that evening to get a CT scan done the following day; he didn’t say implicitly at that point what he was thinking but we all knew.

Thursday I had the CT scan and was told that they were going to do another CT-guided biopsy on Friday (more of a legality than anything, they know exactly what it’s going to be, diffuse large b-cell lymphoma, but they have to by law before any new treatment is started). The biopsy was uncomfortable, but by no means the worst thing I’ve endured so far; the safest mass to biopsy this time was the one in my pelvic region rather than the one in my chest like back in March, and I was told that they would have to go in through my butt cheek. Ouch. An arse cheek full of local anaesthetic is not the one. That went ahead without a hitch, just one sore half-arse. Later on Friday, I was given a new PICC line (my third central line, second PICC line) by one of my lovely cancer nurses from my unit, but having already had 2 lines previously it was a walk in the park. The one that was in my right arm (this new one is in my left) was only taken out a month ago! Bloody Sod’s Law.

Then a few hours later my consultant came to my room to have a proper chat about things. There’s no beating around the bush really, and I’m glad my consultant says it like it is; this is not good. The lymphoma has grown back quickly and aggressively since chemo has finished. This means that it was (or is I guess) resistant to chemotherapy. Now they are going ahead with something that I knew was a possibility from the start, they call it salvage chemo, chemo they try when standard treatment doesn’t work. It’s all very rushed and so it’s been a bit of a whirlwind really, which is good, I don’t need time to worry and think, I like to be busy and be busy having treatment and such. 

As far as I understand so far, this next type of chemo (which is going to start tomorrow; when I say they have moved fast around this, I mean it!) is completely different drugs to what I’ve already had. It is called GDP and consists of high dose prednisone (a steroid) and gemcitabine and cisplatin which are chemo drugs. It’ll be delivered on day 1, and day 8, and then repeated on day 21, as long as I have recovered in time. I’ll have 2 rounds of this, then a repeat scan to check how things are going. If it’s working I will then have BEAM chemotherapy (which again is just another combination of drugs) for 6 days, followed by a stem cell transplant (of my own stem cells hopefully) to re-seed my bone marrow after this extra strong 6 days of chemo virtually kills it off. I’m not really sure on the timescale of these things, my wonderful consultant will be planning these things out as I type, that’s his domain and expertise and I trust him implicitly.

So, the shit side of things. This GDP chemo has about a 50% chance of working. Which is f*cking shit, let me be the first one to say that. If it looks like it isn’t working then I will be eligible for a very new, just-on-the-horizon treatment option called CAR-T therapy. But let’s cross that bridge if/when we get to it. 

I know everyone’s response to this news is going to be to want to message me with “I’m sorry”s and sympathy, but please don’t. It does not make me feel any better about this situation and it certainly doesn’t help it. It is something I have zero control over and you telling me you are sorry does absolutely nothing other than make me feel crappy. I intend to carry on with the same positivity and brightness as I have all year, taking each day as it comes. So please, by all means, message me and talk to me about this, but keep your sympathetic smiles and your “sorry”s to yourself please, and just talk to me like you always have! I’m still the same stubborn, strong-minded Lucy, nothing in the world will change that!

Chapter 15: Things cancer has taught me…

I can’t sleep (chugging a litre of coke at the cinema pretty late tends to have that effect), so I thought I’d write a little on a topic that I’ve been thinking of a lot lately.

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I guess it’s odd to think of cancer as being beneficial in any way; it’s pretty detrimental by nature, but it does cause us to take stock and examine our lives with scrutiny, and let me tell you, a brush with death does wonders for reevaluating things. So here are some things cancer has taught me.

I am strong. Tell a girl she’s got cancer and you expect her to just crumble and dissolve. This didn’t really happen to me. I mean the initial conversation was pretty horrific; the kind of wording that makes your heart jump into your mouth, all sound in the room disappear and time stop, but after a few minutes of hyperventilating and feeling like someone had whipped the chair out from under me, I just sort of got on with it. Somehow I even fell asleep in a hospital ward and woke up the next morning to a completely different life. I’ve always been the type of person who is good in a crisis; I’m very good at viewing a situation objectively and seeing what needs to be done and with my own situation things were no different. I endured 7 months of horrendous high-dose chemotherapy, feeling iller than I thought was ever possible, multiple procedures that I wouldn’t have wished upon my worst enemy, giving the complete autonomy of my body over to other people, but I’m here, at the end of it, having been told time and time again just how positive I stayed. And I’m so bloody proud of myself for that.

I am confident. This is another strange one for me really. I wouldn’t have said that I was lacking in confidence before my diagnosis, I was comfortable with the person I was and I paid no attention to what others thought of me, but there is confident and then there is going out in public with no makeup and no hair confident. I can still remember the first time I went out without a headscarf on, it was to a B&Q (how glamorous) to buy a parasol (cheers chemo drugs for making me extra sensitive to the sun on the sunniest summer in years) and it felt so invigorating. I felt so powerful; a force to be reckoned with. After a few more trips out I even became so bold as to pull faces at the people who brazenly stared without trying to hide it (come on, we all know how to look at someone without making it look like you’re looking) and now I’m so used to seeing myself with little to no hair, that I’m going to keep it this short out of choice now that it’s growing again. I love this confident version of myself who feels feminine and sexy with what the world would deem a ‘masculine’ haircut.

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I am fearless. As for the fears part, I suppose it’s a bit like CBT; being forced to face your fears is a bloody good way to get over them. I wasn’t a particularly fearful person before, I did, however, have a few irrational fears instilled by an anxious mind and confirmed by panic attacks. If you’ve never developed an irrational, illogical fear, for any reason, then it’s a little bit difficult to explain. Without going into too much detail I developed an irrational fear of having an allergic reaction to something, caused by my first panic attack about 7 years ago. In particular, for me, it was the thought of having an allergic reaction and not being able to breathe (lol cancer for growing a 10cm tumour in my chest and making me understand what it really means to not be able to breathe), and at its worst, it would occupy my thoughts most of the day to the point where I would be constantly avoiding touching/eating/smelling things in case I had an allergic reaction to them (sounds silly now; at the time it was terrifying). I received counselling and CBT and after a brief stint on antidepressants alongside both, I managed to quell this illogical fear enough that it would only very occasionally and rarely rear its ugly head. I really struggled with new things that I hadn’t come into contact with before; new medicines were a particular difficulty for me. It took me about an hour to take my first antidepressant pill because I couldn’t stop the intrusive ‘what if?’ thoughts that I might be allergic to it, and yet for the past 7 months I gave consent to be pumped full of toxic substances that are known and actually expected to cause allergic reactions, and I didn’t even flinch. No worrying, no panic attacks. I even had a handful of real allergic reactions to said drugs. I didn’t die, I didn’t even come close, and I guess that’s all it takes for the brain to be reprogrammed.

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I am grateful. If I’m entirely honest, I was a bit of a whinger before my diagnosis, a real Debbie Downer. I had the whole ‘woe is me’ thing down to a tee. I focused on the negative in my life; what I didn’t have and was blind to the positive. If I could go back in time and tell my former self something I would slap her silly and tell her to appreciate the good things. When I was diagnosed there was one day, about a week after D-day, where I had a full-on ‘it’s not fair, why me’ meltdown, but I soon came to the realisation that nothing I could have done would have prevented this from happening and it is purely luck of the draw.

As Jen (Jen’s Cancer Chronicles) one of my friends from our ‘Badass Babes’ support group so eloquently put it;

“…I am not angry or sad that I got cancer, I am only grateful that it was found, and that it happened in a time in my life when I had the beauty of the NHS behind me and my lovely friends and family. Yes, I feel lucky. I see those flowers, butterflies and sunshine every day. Even if nothing seems like it’s going right, all it takes is a stranger to smile or hold a door open for you and there is something to be grateful for.”

I couldn’t have put it better myself.

And finally…

I am great at drawing my eyebrows on. If precision eyebrowing ever becomes a competitive sport, I could definitely bring home the gold for old Blighty.

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Chapter 14: Aren’t you happy you’re finished?…

Well, that’s it! It’s all finished.

70 nights in hospital.
41 clinic appointments.
14 blood transfusions.
12 platelet transfusions.
8 neutropenic sepsis’.
8 lumbar punctures.
5 high-dose chemo cycles.
5 x-rays.
4 trips to A&E.
3 allergic reactions.
3 CT scans.
2 central lines.

Definitely, way more time than any 20-something-year-old wants to spend in hospital.

I’ve had a lot of ‘Are you pleased that it’s finished?’, ‘I bet you’re really relieved now aren’t you?’ and ‘Isn’t it a weight off your shoulders?’ and to be honest I still don’t really know how I feel.

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I feel physically better than I have for the past 7 months and I’m supremely happy that I don’t have to have any more chemotherapy (for the time being at least), but do I feel relieved/happy/like a weight has been lifted? No. No, I don’t.

I felt pretty good mentally (surprisingly) throughout my treatment. I never succumbed to the thought that this might not work; I felt positive and hopeful. It’s not that I don’t feel positive and hopeful now, it’s more that I feel sort of lost and abandoned. I have had at least 2 appointments a week for the past 7 months and now I am well enough that I have been set free until my PET scan at the end of January. Which is a good thing I know, but when you’ve had that constant care and monitoring for so long, to now have nothing feels very unnerving. I feel like I don’t really belong anywhere at the moment. I’m not ill so I don’t belong in hospital but I’m not well enough to go back to work, so I’m just sort of floating in limbo until January.

I remember my consultant telling me that often it is after treatment that people begin to struggle with their mental health, and I remember thinking “How silly! I’ll be so much better after chemo finishes, not worse…” but she was right (of course she was, she’s the one in charge). I think it’s the unknown that is daunting. I have to spend the next 3 months not knowing how treatment has gone. I think it’s also losing that crutch of care from the hospital. Every little pang of pain or discomfort in my body immediately sends me into a headspin of worry. What if that’s the cancer?!?

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I have requested a referral to a therapist from my Nurse Specialist. Having spoken with my little group of cancer friends (we have dubbed ourselves the Badass Babes and they have changed my life for the better) they have all suggested this. I think it’s something that should be talked about more; counselling/therapy for or after cancer treatment. Anything to lessen the taboo of cancer in any way.

I think what I want anyone who is nearing the end or has just finished their treatment to take away from this is that you’re going to have a lot of people expecting you to be feeling better now, but it’s okay to not feel okay 🖤

Chapter 13: Chemo Brain 2: The Return of Forgetfulness

I forget everything these days. I mean EVERYTHING. In fact, I started this blog post 2 days ago AND THEN BLOODY FORGOT IT.

When I was going through chemotherapy the symptoms presented themselves as general mental confusion and fogginess and a lack of interest in just about anything that I used to enjoy. I found it difficult to follow conversations; especially if music or the TV was on in the background. It was like suddenly I didn’t speak English. I could see the mouth of the person who was talking to me moving, and sounds were coming out, but it just went straight in one ear and out of the other. Language error 404, not found. I explained to my friends and family that I was sorry if I seemed distant or moody, but it was scary feeling so overwhelmed by the smallest things like holding a conversation. I would find myself just nodding and saying ‘yeah’ and hoping that they didn’t realise that I had no clue what they were talking about.

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If that was ‘Chemo Brain’ the movie, this is the the sequel ‘Chemo Brain: The Return of Forgetfulness’.

Over the past few weeks, I have realised just how awful my short-term memory is now. I don’t have any problems with the long-term things like what my name is or what year it is (most of the time… I did almost put 2019 on a form a few months ago…) but the really short-term stuff I really struggle with. Every day I have pills to take in the morning and in the evening. Every day I get up and I stare blankly at my pill organiser (that has those compartments for the days of the week) with absolutely no idea what day I have just woken up to. I try to think about what I did yesterday or what day it might have been then and most mornings I come up completely blank. It’s like the previous day’s activities have been erased from my hard drive; just a black void where my memories should have been. I can only tell what day it is by using the previous day’s pills as a guide, and the one day each week where I wake up to a refilled pill organiser good old Google helps me out.

I have a million lists on my phone for things I have to do or to remember, and then I will set a reminder if it’s something that needs doing at a certain time otherwise I will forget. I can think of something important and in my head go ‘oh yes, that’s important, I need to do that’, but if something distracts me before I can write it down WHOOOSH, it’s gone. For maybe a few hours, maybe a day, who knows. It’s so frustrating. I know I’ve forgotten something that was literally just there in my mind but the harder I try to think of it, the more annoyed and anxious it makes me feel, so I try to just move on and hope it zips back into my head at some point.

The other night I was running a bath. The bath-tub is one of those ones that has twisty dial taps and a twisty dial for the plug open/close. I had both taps running. I wanted to stop the cold tap. What did I do? I opened the plughole and left both taps running. Did I sit on the bathroom floor for 5 minutes wondering why the bath was taking so long to fill? Yes. Yes, I did.

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Chapter 12: Chemo finito

I 100% have been avoiding updating this blog, so apologies for that, but it’s one of those sorry, not sorry moments. I just wanted a break. I have just checked and it has been nearly 7 weeks since I posted anything and there is one major difference now; chemo has finished. I could still honestly cry when I think about that phrase and how it makes me feel.

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So what’s happened in the last 7 weeks? Well, I had another middle-of-the-night trip to A&E for some mystery back and chest pain (I low key thought I might have been having a heart attack) but they couldn’t find any cause so after a mere 9 hours I was sent home. My last admission to hospital for chemo (or so I thought) then came earlier than I wanted (the next day). A miscommunication between various parties meant that my chemo was prescribed already and I had a surprise phone call saying that they had a bed for me (a whole three days early, lucky me) and so the final round began.

Day 1 Chemo
2 Chemo
3 Chemo
4 Chemo
5 Chemo
6 No chemo! (But 7th lumbar puncture boo 👎)
7 No chemo!
8 Chemo again…
9 2 units of blood
10 No chemo!
11 Fluids began in preparation for yet more chemo
12 LAST BAG OF CHEMO (and fluids)
13 Temp spike (surprise, surprise) so antibiotics started (and fluids)
14 Unit of platelets (and fluids…)
15 Fluids still going…
16 Yep you guessed it, more fluids
17 FINALLY ALLOWED HOME

So much easier than typing it out, why wasn’t I doing it in table form from the start?!? The last bag of chemo was the one I had serious anxiety about. It’s a drug called methotrexate and it’s given in one high-dose, 24-hour infusion and is proceeded by intense hydration for the following 4(ish) days until the amount in your blood drops below a specific threshold. And when I say intense hydration I mean it. I’m talking about weeing out nearly 7 litres in 24 hours. If you thought it was difficult to sleep in hospital ordinarily try having to get up every 2 hours to piss like a racehorse. But that’s not the reason I was really dreading it, it was because it nearly always causes mucositis which, in case you can’t remember from the last time I had it, is “painful inflammation and ulceration of the mucous membranes lining the digestive tract”. Just think about those words for a second. Think about where the digestive tract starts. And where it ends. And now imagine ulcers in all those places. Yep. V̶e̶r̶y̶ ̶p̶a̶i̶n̶f̶u̶l. Complete and utter agony. It was actually worse this time, which I wouldn’t have thought was possible and lasted 2 whole weeks. Two fucking weeks (pardon my French). All I ate was ice-cream and soup for 2 weeks. Swallowing felt like shards of glass and for 3 days I couldn’t talk. Oh, and my nose bled all the time because there were ulcers up there too, so that meant two more units of blood and another unit of platelets. I also had to have my 8th and final lumbar while feeling totally pants, but I was ecstatic that they were all finished and that I wouldn’t have to have any more. I hope you never have to endure one lumbar puncture let alone eight.

If you’ve not experienced chronic pain that lasts for a substantial period of time let me tell you it really tests you as a person. After I was discharged from hospital I still had my twice-weekly clinic appointments at my cancer unit and they could tell instantly just how much pain I was in and how utterly shite I felt from my demeanour, and surprise, surprise I ended up back in the hospital again after another temperature spike #frequentflier. Three days of antibiotics and I was sent home. FOR THE VERY LAST TIME.

I have one more day of treatment left in six days time. It’ll be my 8th and final dose of rituximab, which is the chemo-that-isn’t-really-chemo stuff. It’s that immunotherapy/target therapy drug that tricks my own immune system into hunting down those pesky cancer cells and unceremoniously evicting them from my person. Although the nasty stuff, the real chemo, has already finished, next Thursday will still be a pretty momentous occasion; the last treatment. The last time chemicals are pumped into me. They’ve even said that they can take my PICC line out (consultant permitting) as soon as the infusion is finished so I can finally be less Borg, more human.

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Addendum: my consultant’s name is Dr Borg which as a Trekkie has pleased me greatly.