I woke that morning with confidence, showered and dressed. A friend of mine bought me this epic t-shirt when I was diagnosed – it says ‘Life’s a bitch and so am I’ and I defiantly promised I would wear it to chemo. But when it came to it, I wasn’t feeling quite so brave. Maybe I’ll wear it for my last chemo, or for when we can both wear our t-shirts out when life returns to “normal.”
I straightened the old hair, put a little slap on and packed an emergency overnight bag just in case the chemo caused some side effects. I also packed scarf, gloves and hat as I was really worried about the side effects of temperature and the threat of a throat spasm.
Tip: pack the emergency overnight bag and give your family/ friends, whoever is staying with you access to the emergency chemo number issued by the Focus Centre/ oncology.
My parents had come up the night before, I’d thought I could probably drive myself to chemo once I had some knowledge of the side effects (how I love my optimism in hindsight!), but we thought for the first time maybe a lift would help. The night before, we had a nice meal and a few glasses of wine, I suppose it was a temporary end to an era that needed closing for six months, a further suspension of living normally.
Tip: Do not drive yourself to chemo for your first appointment, if you have transport issues the hospital or MacMillan can help – make sure you plan in advance.
Once at the hospital my mum walked me to the ward. I felt a little sassy if honest, I felt well, this chemo was voluntary, I didn’t need it to save my life and therefore it can’t be that bad, right? Once at the ward and with Covid rules, my mum had to leave, I could sense she was really worried and honestly, I couldn’t see why. I genuinely thought I had this in the bag. Stupid, stupid, stupid me.
So with chemo, they measured my height and my weight to determine the exact dose of the drugs I’d need.
Tip: they take your weight at every session so wear sensible shoes you can slip off, you don’t want to be fumbling with 8 hole boots!
I was ushered on to the ward and sat down in one of those reclining chairs. I scanned the ward for faces that might provide some comfort and got nothing. Due to Covid, each chemo area was set up approx 4-5 metres apart, there were transparent screens up to limit any potential transmission. All I saw was a sea of sick people, all looking miserable, vacant and sad. This wasn’t any of the jovial ‘lets make friends and share experiences chat’ that I’d heard about. Covid had destroyed this part of the experience for me too.
I was now nervous, because actually, I wasn’t really sick so why was I put on a ward with people who looked like there were (not to sound rude) seriously poorly? I was ok, wasn’t I?
My nurse came over with this enormous box – she started talking to me about each of the pills I had to take, anti-nausea this, steroids that, chemo pills, the list was endless. She was brilliant but I had real fear now, the realisation this was serious was when I got told the Capeciteabine tablets were so toxic not to touch them with my hands – they burn. Jesus Christ – why would I ingest these?
I then placed my hand in hot water to make my veins in my hand more apparent. Apparently because I had chosen not to have a PICC line they have to find a vein somewhere below the forearm as a limit. For blood tests I have veins that nurses salivate over, it’s a bit weird; chemo, it’s like my veins know what’s coming and hide away.
Once the cannula had been inserted after some quite lengthy hand baths in hot water (they make your veins more visible), they ran an anti-nausea drip in to me, followed by a glucose serum that makes the Oxalyplatin easier on the body. When the chemo did start, I felt nothing – the nurse gave me a nice heated wheat bag as apparently the Oxalyplatin can irritate your veins and heat can help and she went on her merry way.
Knowing how toxic chemo is, I dared not move my hand so for me taking a Kindle or tablet in was useless. I decided to just play with my phone and message my friends who thankfully were available to send me memes, and banter. But I couldn’t shake the terror, I kept looking round the ward and I had this realisation once again that I was sick, my cancer could be deadly, and life was tainted.
My sassiness dissolved and I just wept, so much so the nurses pulled the curtains around me so I could just be alone. I feel such a wimp, I’m so not brave – I’ve had so many friends reach out and they say that a lot to you, how brave you are. But no, when it comes to it, it’s like having a gun to your head and there are no options, you have to deal with it. Being told I’m brave makes me angry, it’s a nice sentiment but I feel a fraud, a wimpish fraud.
My arm did start to ache during the chemo, I couldn’t work out if that was because I sat deadly still, or it was the chemo? (Hint: it’s the chemo). Once the drip had finished and some other serum was used to wash out the toxins, they had to take off the plaster.
Oxalyplatin burns your veins, the plasters used to keep the cannulas where they are need to be taken off gently as the immediate cannuliased skin area and, quite frankly the arm where the chemo is given, is burnt on the inside.
Tip: please ensure you tell the nurses if taking off the plaster hurts, because they are ever so nice and will accommodate to make things easier. With so many treatments/ patients, the staff can’t remember your specific case and Oxalyplatin has a plethora of bespoke side effects that will be individual to each patient.
Once I was detached, I was desperate for the loo. That’s when I noticed that by moving there was a tingling sensation in my fingers. Touching the toilet door, flush, sink…..my hands felt like they were fizzing. Washing my hands was like that feeling you get when you sat on your foot too long, pins and needles. I was so shocked the side effects started as soon as that – I hadn’t even left the hospital!
Mum met me as I left the ward, she must have seen my face, I told her about my hands, I was panicked and she was brilliant, she opened the car door, fixed my seatbelt and there I was – a child, I felt helpless and hopeless.
The first thing I did when I got home was put my pyjamas on, now this was fascinating, because even clothes made my hands fizz, so I had to give up and put on gloves just to undress – – the first battle – the bra.
Tip: With Oxalyplatin, gloves are your friend to protect your fingers, have a pair anywhere and everywhere. The more dexterous the better to help you function. I had three, one for bed, one for living room and an outside pair – I know spoilt!
Tip: Chemo session 1 was the first and last time I wore a bra to chemo – I was lucky it was winter, so I could wear layers, but consider it and the types of clothes you wear. It will make life easier and more comfortable it you wear clothes that can slip on and off easily.
I think the most worrying thing was that I couldn’t use cutlery without gloves, so like a child I needed my Mum to cut up my food.
I have a tip for friends or family members during this first session: please relax a bit on the messages and calls for a few days post chemo. Picking up my phone because of the neuropathy was painful, but also, I just didn’t have it in me to communicate. Your messages can wait a few days, and will always be welcomed. But don’t be offended if you don’t get instant replies. Chemo absolutely sucks. It hurts and makes you too tired to do anything.
Tip: Purchase gloves for smart phones – they were fantastic not just helping with the neuropathy, but I wore them for drinking, eating and work too, as typing hurt my hands. They have a dexterity most gloves do not.
The days after consisted of the following:
- Days 1-4 – depression, nausea, fatigue, neuropathy in hands/ jaw (yes it hurts to bite food, but only the first one or two bites), really painful arm from wrist to shoulder where the intravenous went in;
- Days 5-6 – neuropathy intensifies, insane diarrhoea accompanied by an appetite that cannot be satiated, euphoria.
- Day 7 – Neuropathy, diarrhoea, euphoria, imagine going from 2/10 with feeling awful, to then overnight being normal or 10/10. I had energy and wanted to do everything.
- Days 8-14 – neuropathy in hands starts to decline.
- Days 14-21 – normal.
My parents left after day four, and I felt vulnerable, I admit I cried when they were going, I was unsure if this was the chemo side effects, feeling vulnerable, the massive amount of hormones injected by the Zoladex, or the anti nausea steroids but I know I felt low. The nausea in my jaw also affected my sinuses so as much as I wanted to release my emotions and have a good cry, it hurt – physically it’s painful. But I wanted to try and work, and so I sent my parents home so that I could go back to my old life, speak to friends and try to set a routine – it was a distraction to get my mind moving outside of the chemo.
However, I will also be honest, at work I had intense brain fog, I needed naps at lunch time and straight after work and I was not at fully functional capacity.
On the day the euphoria hit my appetite became insane and I ordered a Domino’s Pizza. I can’t explain the feeling of hunger pains – they came quickly and I was ravenous and needed something stodgy and filling. The issue was that my sense of taste went AWOL. So I ordered a pizza that tasted like it had spent a day in the trash. Now I confess I did eat it, there was nothing wrong with it, but beware not to order anything too expensive just in case it tastes rank.
On Day 7, I had a craving, I wanted spicey food and nibbles and tootled to my local supermarket, picked up some chicken wings to cook laced with some nice chilli, I don’t regret what I did, but my stomach woke me that night, searing pain that kept me awake.
Tip: Read the instructions of your chemo pills, they say things like don’t eat spicey food. Also ask your chemo nurse for Omeprazole it really helps!
When the euphoria hit, I has this insane amount of energy, I was back to enjoyig work, I walked five miles a day again and ensured I went outside at every opportunity; it was phenomenal to know I had my sense of self-back. By the Friday (Day 8), I was driving again and I even had a day trip to Chepstow with a friend – and although I needed to wrap up in unseasonably warm weather because of the neuropathy, it was a sense of normal.