I started this post a week after my first round of chemo, but didn’t get too far. In fact, the whole thing was comprised of only the words in the title of this post, and remained stuck like that for another week.
WTF CHEMO, WTF
That was my initial response, and completely the correct one, but lucky for you, to give you a more comprehensive idea of what went on in my first round of chemo, I gave it another shot. Happy reading! (It’s another long one, sorry!)
CHEMO V SURGERY
Right now as this goes live I am sat in the Macmillan Centre at UCLH having chemotherapy, but this post was actually completed the day before I was due to start my second round of chemo and started a week prior to that. There are a couple of reasons I had such difficulty putting this one together.
Firstly, chemo brain! Chemo messes with your head, and I have had real difficulty in compiling posts, in organising my thoughts and feelings and transforming them into literate sentences that accurately convey the absolute shitfest that my first round of chemo was. Also, there was a hell of a lot to include because a hell of a lot went down!
Secondly, my first round of chemotherapy was, if you haven’t already worked this out, crappy. It’s not that I fear revisiting it, but rather I tend to be moved more by positive experiences, that I am excited by and want to relay to you (unless of course you count that time I was asked if I had polio, that was fab to blog about). Unfortunately for me, sarcoma often isn’t a positive experience and so, whether I want to or not, I need to get on with it and fill you in on what happened on my first round of chemo.
Three weeks ago, on Wednesday 2nd March, on a beautifully grey day that can only be described, without any exaggeration, as the beginning of the end, I sat down, happy as Larry, ready to start chemo. Although I was nervous about what chemo could bring, and I was under no illusions as to how difficult it could get, it was a comfortable nervousness – a quietly confident nervousness – because I had done the worst of my recovery.
My surgery had been major, and anyone who either knows me or has read any of my blog will know the negative effect it had on me, mentally and physically. Whilst it wore me down and took a lot out of me, one positive to come out of it is that I feel in some respects toughened by it. Of course I am actually weaker than I was before, but it has filled me with a quiet determination and confidence that actually I can get through a lot. On approaching this chemo I knew it could get very bad and I could feel very ill, but I was certain that I had already been dragged further along far grittier ground by my surgeons, than I was about to be by chemotherapy.
I told my consultant and chemo CNS (clinical nurse specialist) on Wednesday morning that I was filled with that juxtaposition of nerves and confidence that one feels the morning of a half marathon, a few months after completing the full marathon. They seemed to agree with my approach and I got the feeling that we all knew that this chemo would be different, a long gruel with seemingly many setbacks, temperatures and bald spots, but that at the end of the day it could not match the physical pain of my surgery.
I know physical pain isn’t everything, and probably even a lot of the fallout of this surgery has been trying to deal mentally with its physical implications, so the mental trials of chemo could not be underplayed. Eighteen weeks of chemo is a long time, and keeping myself going mentally throughout its entirety would be tough. I am someone who doesn’t do so well when I cannot feel myself progressing; I have always been very competitive in nature and even since this surgery it drives me mad when I don’t think I am getting anywhere. Post operatively I felt myself recover mentally when physically I could begin walking further, to the door, back to intensive care, more than once a day. With chemotherapy it wouldn’t be such a simple line from administration to recovery, because it is comprised of six cycles, each three weeks long, each one knocking you back slightly further than the previous one.
But then again, on the plus side pretty much everything about chemotherapy is temporary. I know there are the fertility issues, which cannot be taken lightly, but the weakness, fatigue, and visual changes would only be temporary. There would be an end date to the misery! And that is what I struggle with mostly from this op – the lack of knowledge as to how temporary or permanent many of my physical difficulties are.
Anyway, I am not sure why I am reeling off about whether chemo or my surgery is worst, because that’s not what I meant this post to be, it isn’t really particularly important. It’s all down to the individual and we all have our strengths, our vices, our own demons. My point is that I was nervous but not out of control nervous. I even turned down anti sickness meds that they offer on the first round because people are often sick because of nerves.
I have one thing to say – HA HA HA HILARIOUS WHAT A IGNORANT FOOL. Unfortunately, the chemo didn’t all go so fabulously as I hoped it would, because of course when does sarcoma treatment ever go perfectly!
So here is what went down on those dreaded God forsaken few days…
(okay I might actually be exaggerating a bit; I think I should mention that, in case some poor, innocent, blessed, chemo-Virgin stumbles upon this post and thinks Jesus Christ I am NOT having chemo.)
THE CHEMO REGIME
My chemo regime is as follows: I have six cycles of chemo in total. Each cycle consists of two drugs, Doxorubicin and Ifosfamide, which are administered over three days under Ambulatory Care at the Macmillan Centre in UCLH. Ambulatory care is a fabulous, fairly new concept in the way patients undergo their treatment, and what happens is that we stay next to UCLH, in hospital accommodation close enough to the ward such that if something happens we can get help within a matter of minutes, but far enough away that we don’t feel like we are in hospital.
For me it was perfect because I haven’t been doing so well with the idea of being admitted to hospital recently. For my mental wellbeing it was an absolute blessing; as the days went on and problems began to crop up, both myself and my mum could feel me getting stressed about what I felt was the impending prospect of a stay on the ward. It’s silly because I know really hospitals are nothing to be scared of, and I love all the hospitals I am treated at, but something doesn’t seem to connect properly in my brain and I get unreasonably anxious about sleeping on a ward. It may sound pathetic but I think in many ways I have reverted back to how I was when I was a lot younger. Independence has been taken away from me and, although in many ways I want it back, as I am at this moment I am not ready for it.
The chemo was very unfamiliar, very unnerving, and following on from the Wednesday start date, I became quite obviously scared for a good week about the idea of being left on my own. Even in the light of day I resisted and dreaded my mum leaving me alone in the room to go buy food, whilst my head spun and the lights flashed. On returning home from UCLH I slept with my door ajar for a number of days, and in the hotel room I made my mum move our beds closer together so that I could feel safe. Babyish maybe, but I have landed slap bang on my ass in a world where I need looking after again. Even if we take away the fact that a ward admission would dredge up uncomfortable memories of my previous three week hospital stay, ambulatory care was still so full of positives, and I feel so lucky to be having chemo in a place that offers this facility.
So, more about the chemo! Doxorubicin, which is often referred to as the red devil, and Ifosfamide are the two standard chemo drugs for treating sarcoma, which is why these were chosen in my treatment. They are pretty hardcore chemo drugs and when I asked my consultant why, if they weren’t sure how Epithelioid sarcoma (my sarcoma) reacts to chemo, they were using these specific ones and not attacking any possible remaining sarcoma cells with the most aggressive ones, she had a nice little chuckle to herself. I feel that nicely makes my point about how ugly and nasty these drugs are.
I go in on each of the days from Wednesday to Friday, and I am connected via my PICC line to both the drugs, a three litre bag of fluids (saline) and mesna, a drug that protects the bladder. The Doxorubicin is administered over forty eight hours, in a balloon that gradually deflates over twenty four hours then is replaced on the Thursday. The Ifosfamide is administered over three hours on each of the days and is very damaging to the bladder, so it is important to flush it through, hence the ridiculous amount of fluids and the mesna.
The Ifosfamide is only ever administered on the chemo day unit, but I get sent away with a backpack of fluids, mesna and Doxorubicin each night, which is great as it gets me out of the hospital, but sucks because it is a pain carrying a heavy rucksack around when you feel like shit and your energy levels are low.
Showering with the backpack is a real struggle when you can’t get your PICC line wet; this is another perk of losing my hair: showering will now be much quicker and easier, meaning I won’t have to sit in the bathtub as my mum stands over me, washing my hair and my back. It is the little things that this sarcoma takes from you, like your independence, dignity and strength, and people don’t realise this is another face of chemo, an
altogether less glamorous and romantic face. Showering ourselves is such a luxury we don’t ever pause to consider, but having to sit naked as your parent cleans you reminds you how lucky you are in normal life. The worst thing is though that I didn’t care; you can only imagine how exhausted and unwell I must have felt to reach that point where I had no energy to care about something that would have normally stripped away my dignity and left me humiliated. Since my last round, I have enjoyed every other shower just that little bit more.
Anyway, back to the drugs: the mesna, whilst helping your bladder, doesn’t help with much else. Actually, sorry my mistake, it actually does help you to feel sick and like shit.
I got tipped off to the idea mesna and I probably wouldn’t be having the most blissful, easy going relationship pretty much as soon as I had it injected via the PICC line, when I had to shout for a sick bowl after getting what can only be described as a tsunami tidal wave of nausea. Apparently that’s something that can happen, not that it helped me to feel better about the situation!
On top of the mesna, the chemo also makes you feel pretty sick, so to counteract that there were five different types of anti sickness medications that I took around the clock, from Wednesday to Sunday. I honestly don’t know what I would have done had I not had a mum who is so completely on it with medication time tabling because of her nursing experience and the fabulously appreciated idiot’s guide to anti emetics supplied by UCLH. The problem with the anti sickness meds though is that they are MASSIVELY constipating, one in particular being particularly renowned for it. I was very clear on the fact that constipation was the main thing I was nervous about; after having that eleven day no poop stretch in Stanmore I have been mildly paranoid (read as obsessively paranoid) about having to go through it again.
On top of that, someone I know experienced butt injuries due to constipation from chemo, and visions of me reaching a similar fate have been haunting me at night, chasing me from my dreams to the WC, and so we opted to minimise the particularly constipating anti sickness medication. In my opinion we managed to get a fairly decent trade off, and although I did feel sick throughout my first chemo round, I did escape vomit and bum injury free. Plus I have recently seen my bowel doctor, who gave me lots of brilliant advice for chemo round two.
Anyway, enough about poo and more about chemo – I don’t know what is wrong with me nowadays, all conversations lead to poop…
One of the horrible things about the chemo drugs is that the ridiculous amount of IV fluids needed to flush them leads to a whole lot of toilet trips. Luckily for me, I have nerve damage! Since my wee when I’m on chemo has toxic drugs in it and there are concerns about how safe it would be for me to self catheterise so often, I have a catheter fitted for the days chemo is administered. Although this is a massive pain because, let’s face it, no one likes dragging around a bag of piss for three to five days, it does mean that I get to sleep one hundred times better than the average patient on my chemo regime. I have been told that because of all the fluids, normally it is necessary to get up every thirty minutes to wee throughout the night. Well not for me! Thanks to my doting mum, who I actually cannot thank enough for this, I got up a big fat zero times each night.
At bed time I would connect my smaller 500ml catheter bag to another larger 2l catheter bag, so that all in all I had a pretty hefty bladder capacity of over three litres. Sorry about how much detail I’m going into about my wee here, but I think it’s important because wee is a BIG thing on this chemo regime. Each time you wee on this chemo, you are supposed to measure your output, aiming for 100ml every hour (believe me, my kidneys were smashing that), and use a dipstick to check for blood in the urine. Luckily even for my mum, the most she had to empty it overnight was three times at most; obviously that can be a whole lot more if you’re not as lucky as me and have a fully functioning nervous system.
The blood bit was where I had an issue. From day two onwards my urine kept testing positive for traces of blood, and so I remained connected to the backpack containing extra mesna and fluids, forcibly extending my stay from Wednesday to Friday, to Wednesday to Monday. This is only a short paragraph but do not take this to mean I took it well, nor that I didn’t cry like a baby.
According to my CNS and nurses on the Daycare unit, I had an extreme reaction to the chemo. Although I didn’t actually vomit, I felt really sick throughout, lost my appetite and had majorly weird flashy visuals that unsettled me and made me feel extremely dizzy for days. I didn’t cope with it all well, if I’m being honest, and I relied wholeheartedly on the people around me, particularly my mum, to get me through. I want to include this because I had real difficulty dealing with how poorly I felt I was doing, in comparison to the other amazing people I have met throughout this journey who have had more aggressive and extensive chemo regimes than myself. I know other people who have had approaching fourteen rounds of chemo, some of who are young children, yet I found myself on the second day of my first round crying, telling my mum that I couldn’t do this any more. It is difficult knowing others have done what you are finding impossible, but this chemo has already taught me that you cannot compare yourself to others.
Everyone has their own difficulties, and we all react to things differently. Some have more extreme physical reactions than others, and receiving this diagnosis has taught me that judging myself in relation to those around me gets me nowhere. Unfortunately, living by this mantra is easier said than done! No matter how many times I repeat it to myself, and my mum tells me, and my nurses and doctors tell me, and everyone in the world tells me, I cannot help but judge myself harshly. I know that it gets me nowhere, but it is hard not to when I am lying in the chemo chair and my nurses have to pull the blinds around me because I can’t stop crying, whilst others are sat there chatting with friends or playing pool!
This time I am determined to only focus on myself, and if I do end up judging myself in relation to others which, if I am being realistic, I probably will, I will remember that it is not just me that struggles with chemo. A good friend recently described chemo as “soul destroying”; it literally is poison, so I shouldn’t get upset when I feel too exhausted to walk for two minutes because my body is too busy fighting the chemo drugs. I will allow myself to write off a week and a half, and I will acknowledge that chemo, not laziness, is the reason I find myself slothing on the sofa binge watching Netflix series under the fluffiness blanket in the universe on day ten (from Matalan by the way).
Chemo is tough – it works by destroying your body – and realising that is, for me, the first step in the eighteen week shitstorm that is chemo. Hopefully this cycle will go better than the last; either way, I’ll see you on the other side.
PS chemo round 1 finished with a very stressful car ride, including an emergency toilet stop at my nan’s, where I pooped away about 50% of my constipation. It was glorious. ???