My Chemotherapy Experience.

Picture taken 1st day after Chemo, Dec 2020

I’m not going to lie or beat about the bush on this post, spoiler alert, it was shit. Not a bit rubbish, or exaggerated for effect, and I’m certainly not going to roll it in glitter to make it seem better than it was. It was truly one of the worst experiences of my life. I have never felt more like I have cancer than when I was receiving that poisonous cocktail every three weeks, the one that was designed to save my life.

After receiving my diagnosis at the end of September, I was scheduled to have my first round of chemotherapy at the very beginning of December. It may seem like a long time to wait, but I had to have various scans and the colonoscopy before I could have the treatment. Considering the lockdowns and restrictions for Covid, I felt blessed to be in the system at all. 

I was scheduled to receive a combination known to all in the biz as Capox, a combination of Capecitabine and Oxypalitine. Given in 3 week cycles. An intravenous drip infusion of  Oxypalitine on day 1, followed by 2 weeks of Capecitabine tablets - 4 tablets to be taken twice a day for 14 days - they had to be taken 12hrs apart. Then 7 recovery days before the next round started. We had a meeting with the oncologist and nurse specialist prior to my treatment at Velindre to discuss the treatment and possible side effects. There are a book full. Not pleasant, very scary and ALOT to take onboard. It’s a very overwhelming and quite frankly, a shattering conversation to have. You know this stuff will save your life, that’s if it doesn’t fuck you up or kill you first. 

The powers that be (obviously someone with a spreadsheet and a badge) decided that it was best for me to receive my treatment within my home health board - for convenience. So it was that we trekked up to Prince Charles Hospital in Merthyr FUCKING Tydfil for my first round. For those of you not in the know, Merthyr is not convenient to Llanharan - at all. It’s 45 minutes on a clear day with good traffic. Velindre Cancer centre (not in my home health board) is 25 minutes away. I googled it. They clearly hadn’t. Thankfully, and this is where it worked in our favour, David was working in Merthyr at the time, so he could drop me off and then go to his office for a few hours rather than lurking in the car park. I however, had never been to Merthyr, I don’t know how I would have found the hospital if it hadn't been for David. I only saw 1 sign, and the hospital is tucked away in the middle of the infamous Gurnos estate. To this day, I don’t think I could find my way back there.

Then, it began. Time for the first infusion. You start off with your hand in a bucket of hot water. I’m not even kidding. It’s to get your veins to ping to the top of your hand so they can get a cannula in there. I’ve thin veins apparently (the only bit of me that is), so this does help. I was told to wear long sleeves and a jumper as the infusion of Oxaliplatin can make your arm cold as it goes in. You get a heat pad to wrap around your arm too. They weren’t making light of the coldness of the infusion - it was fucking freezing! Imagine Frosty the Snowman using your arm as a highway to the arctic circle with the air conditioning on. Once the infusion was over I was packed off home in layers and scarves and gloves, the nurses making sure not one bit of me was exposed, with the shittest goodie bag in the world - full of anti-sickness meds. No cake.

This delightful drug is the gift that keeps on giving. Not only was my arm colder than a penguin’s pecker, but you are advised not to touch or drink anything cold. Cold drinks can make your throat spasm, not only cold drinks, but just being cold, and touching anything cold makes it feel like metal spikes are being driven into your fingers. Your feet are also cold. The dreaded Peripheral Neuropathy. Did I mention it makes you cold? Who remembers the kids game where you had to put on a pair of gloves, a hat and a scarf and eat a chocolate bar with a knife and fork? Well that is what I had to resort to. I couldn’t use metal cutlery without gloves. Couldn’t open the fridge and get anything out, couldn’t hold anything from the fridge/ freezer without gloves, couldn’t open a pouch of sodding cat food due to excruciating pain touching something cold, things you didn't even realise were cold, were now cold. Basically nothing. David, along with a full time job, had to take on all the cooking and cleaning and running of the household because the meds turned me into a whole heap of good for nothing, nothingness. I did manage to cook one meal, wearing my gloves and using a knife and fork to cut raw chicken breasts - hilarious looking back on it now. Trying to wash up or clean too - wearing gloves and then washing-up gloves over the top of those! My Mum was drafted in to help with Jack’s breakfast and homeschooling and looking after me during the day.

By the end of the first afternoon, trying to keep my arm warm with hot water bottles, David had ordered an electric heat pad to try and keep my arm comfortable - by far one of the best purchases ever and worth every penny. It arrived the next day - bliss. The cold arm for me lasted 3-4 days.

It was that first evening too I had to commence taking the Capecitabine tablets. 4 tablets the size of rugby balls (I’m not exaggerating). You can’t touch the tablets because of the toxicity of them - totes ok to swallow them though! So popping them into an egg cup to take them became a fun challenge. 

The first few days of the treatment were a doddle, and I genuinely thought I had it down, I was taking the tablets, I was taking the anti sickness and I was rocking Chemo. But I was wrong. It absolutely floored me. It became obvious I couldn’t function normally, I had to stop work as I couldn’t focus on my computer (my employers have been and continue to be amazingly supportive throughout my treatment). By day 4 or 5 I was on my knees. I had no energy, I didn’t feel like eating, I felt sick, I felt like if the cancer didn’t kill me, this would. I was useless. It got harder and harder to take the tablets. To actually put them in my mouth and make myself swallow them took every ounce of willpower I had. I had to remind myself on each tablet, why I was taking them. I didn’t want to eat, and you had to take the tablets within 30mins of having food. I was surviving on rich tea biscuits and tea.

There was one morning in that first week that I couldn’t get out of bed, so with David at work, Mum phoned the chemo hotline and I got the ok to miss the afternoon pills and restart them again in the morning. It gave me the small break I needed to recover and carry on. It was Hard. Hard for everyone, not just me. I will never be able to tell my family enough how much I appreciated their help, support and love. I’m going to break here to also mention my amazing friends, the care packages, the doorstep chats, the whatsapp group chats and the hours long convos about inappropriate subjects will be forever treasured - you know who you are, and you’re an amazing bunch.

At the end of the first round, we had a meeting with the Oncologist to discuss how my treatment had gone. They listened attentively and decided to drop my dosage down to 80%. They had decided to start me on 100% to see how I got on because I was young - they do it the other way around for older patients! It still meant an infusion, and 4 tablets twice a day - 3 bigguns and 1 littleun. 

I coped better on the reduced dose, but my appetite was still very much diminished and I could only eat small meals if I could eat at all. I was tired constantly, and still had to have a lot of help. My taste buds went on strike, which was alarming, as it was also a symptom of covid. Things I normally liked to eat I couldn’t stand. Salt and vinegar crisps were all I could taste - the more face melty the better - think Discos. I was having Complan drinks (made with warm water - blergh!) to supplement my diet, just to get some calories in me. I lost about 3 stone. The pain and effect of the cold in my arm was also getting worse with each infusion. 

And then it was time for a scan to see how I was getting on, and that’s when my world fell apart for a while. Between the scan and results I had to have another treatment, to ensure continuation of treatment. However it was all in vain. The drugs hadn’t worked, and the tumour had grown. While I was taking the medicine that was supposed to be saving my life, the cancer was sticking 2 fingers up to it. And that was devastating. To say the least.

The rug had well and truly been swept out from beneath us. We did not know what to do - for 2 people normally so collected and poised, we suddenly had no control, no answers. We did the only thing we could do - stared at the oncologist and asked ‘what next?’ Those of you who know David will know that’s not a pleasant stare to be on the end of! 

They couldn’t answer that straight away, cue big ugly crying, and weird dreams about my own funeral. That week or so was hard - doom planning and crying, but you can only cry so much before you realise tears won’t cure you. However they do make way for new emotions and vigour. I still had a life to get on with, a family to look after and shit to do. That kind of became my mantra, “I can’t let this beat me, I’ve got shit to do!”

The oncologists team had to go look at the tumour biopsies and formulate a plan B. Which I am very pleased to say they did. (Here comes the science)  I had previously agreed to genetic profiling on my tumour, which showed I had a fault in my mismatch repair gene, which is commonly associated with Lynch Syndrome - a hereditary condition. It turns out I don’t have Lynch Syndrome, so we worked it out, less than 0.01% of people with bowel cancer get my type - lucky me. The tumour has a protein on it which hides the cancer cells from my white blood cells - the ones that usually deal with nasty stuff in the body, like colds, common viruses, and rogue cells etc. Clever Fucker!

What this did mean, however, was that I am a suitable candidate for a very new type of treatment, an Immunotherapy drug called Nivolumab. They had been using it for years on Melanoma (Skin Cancer), but it had only just been licensed for use on Bowel Cancer. It wasn’t available when I was diagnosed initially. And they thought it would work on my tumour. Again, I am counting my blessings, at being in the right place at the right time. I think I was one of the first Bowel Cancer patients at Velindre to have Nivolumab, certainly the first for my Oncologist. But I don’t mind being a guinea pig - so long as it works! For now, the Nivolumab is controlling and containing my tumour, my cancer markers have fallen and my iron levels are normal. As always I have my fingers well and truly crossed.