What Are The Side Effects of VIDE Chemotherapy? My Ass-assination
There are so many unpleasant side effects that I have given them their own post. Absolutely nothing was fun about them but we heal and I can now look back at them with some humour as I don’t want to put you guys through another depressing post! But at the same time I want to be informative as it might help someone. Every individual is different and gets affected in different ways so it’s very personal. The side effects would always peak together when I was at my weakest 7-12 days after chemo. The week after chemo is like having the worst hangover in the world that never ends, with that depressing come down constantly but no good memories from the night before to go with it, and the thought of cancer on your mind. It’s no party. The week after that is the ‘low week’ where blood cells are reduced and then you start to recover overnight just in time for more chemo, hooray!
I will go straight in with one of the worse side effects I encountered. A quick disclosure that I won’t be holding back on this and I will be including all the bloody details, so skip this part if you’re eating your dinner. Chemo drugs kill cancer cells because they rapidly grow but they also attack healthy cells that similarly rapidly grow. This includes your mucous membrane that lines your mouth all the way through your gut to your backside. Mouth ulcers are very common and when mine were at their worst I couldn’t speak or eat. I lived on a diet of soups and smoothies for a few days each cycle and it helped to suck on an ice lolly or a frozen banana. Using Bonjela and a decent mouth wash helped to keep the area numb to reduce pain, and also clean to prevented infection.
However, my main issue was the other end. It was a bloody mess, literally. After I went to the toilet it looked like a scene from C.S.I. Miami. I was cut to shreds and to make it worse the drugs also made me really constipated so going to the toilet was like trying to push a house brick through a pin hole. I didn’t want to push and tear myself in two but letting nature take its course was a very slow, painful and debilitating experience. I got anxious before my morning poo and I was a shaking, broken mess afterwards. Like many people my morning routine is usually something I enjoy and take my time doing but it turned into the worst part of my day. The pain would last all day and keep me up at night; this lasted about 7-10 days every cycle and peaked in the middle. To make it even worse I used way too many wet wipes trying to keep it squeaky clean and ended up getting a skin reaction, so my ass ended up looking like a very tatty Japanese flag. I have a high pain threshold, I’ve broken many bones and always getting nasty injuries playing rugby but this was the most painful thing I have ever experienced. I would have taken a haymaker from Tyson in his prime any day over this. It was worse than the pain the tumour was giving me! I took to google to find some help and reassurance and ended up thinking I now had ass cancer too! It was depressing and unbearable. What helped was taking a hot bath with salt and Dettol after my routine morning ‘movement’. The heat of the bath is the only thing that would ease the pain along with a lot of pain killers/ibuprofen. One time I over did the hot water and ended up burning my balls, they worryingly turned dark purple and black for about a week due to having low platelet levels and bruising easily. That was all I needed! During these dark days for my sphincter I had to get my usual routine check-up by my oncologist before my chemo. I mentioned this issue and my worries. I won’t go into any detail but I now have a connection to him I don’t have with any other person. I felt used and dirty, he didn’t even buy me a drink! But he reassured me and eased my worries.
Sickness and nausea are very common and I had a few bouts but it was mostly kept under control by religiously taking anti sickness drugs during treatment and the week after. My very first VIDE chemo was horrendous. When I got home in the evening from hospital I felt giddy, sick, poisoned and had the shivers. I went to bed to sleep it off and took some sleeping tablets to help. I think it was a combination of the shock from chemo and the steroids I took to help combat the sickness, but it resulted in one of the worst night’s sleep I’ve ever had. My room was spinning and I was hallucinating. I tossed and turned for hours before decided to try and get more comfortable on the sofa, my room was starting to feel like a very lonely prison and I was having anxiety attacks. It wasn’t much better downstairs but I was in and out of sleep for a few hours. I had this crazy hallucination that I carved wooden figurines for all my friends. It was so vivid that in the morning I was searching around the sofa for them. Weird!
The side effect that is most common and well-known is hair loss. It affects everyone defiantly and I was confident I might dodge it. However after my second cycle I woke up one morning and my moustache was falling off my face, so I decided to take control of the situation and shave everything off. I’m a very hairy bloke so it would have been very messy letting it fall out! I’m not vain at all so it didn’t bother me too much but I can completely understand why anyone would be affected more by it. My arms, legs, eye brows and eye lashes stayed strong for another month but eventually everything went and I looked like a naked mole rat. Even my nose hair fell out so now I was more susceptible to breathing unwanted things in. It did affect me psychologically as I started to look ill as well as feel it, so my whole attitude and demeanour changed. I’ve always been a very confident bloke and anyone that knows me will tell you I don’t shy away from anything but I started to get a bit shy in public, mainly because of how I felt but now also down to looking ill. If you look good you feel good usually! I also started to wear my glasses constantly to try and hide the fact I didn’t have any eyebrows. This just made me look like Harry Hills doppelganger.
One thing I wasn’t expecting is how painful it was when the hair started to grow back, for some reason just on my ass cheeks and thighs. Like I said I am a very hairy bloke and the hairs were struggling to get through the skin I think. It was painful when I yawned or was cold and the hairs tried to stand on end. It passed after a few weeks and a lot of dry body brushing! Look that up if you want a good exfoliation, it has lots of health benefits!
When I was at my worse, for some reason my eyes and nose were constantly running. I had a constant drip on the end of my nose sometimes! I become that person that couldn’t leave home without a pocket full of tissues.
The chemo drugs affect your taste buds. It wasn’t too bad for me and only affected me the couple of days immediately after but everything tasted of chemicals and I couldn’t eat anything with a strong flavour. Anything I had regularly eaten in hospital is now almost impossible to eat as I have a bad association to it. I found it helped to keep to easily edible things that were fresh and not too over powering.
My skin dried up and started to crack, especially my hands where I was now washing them so much to try and reduce any germs. So moisturizing is key!
The side effect which is most dangerous though is what the chemo drugs do to your blood cell counts. Each round I would become anaemic (reduced red blood cells/haemoglobin). Haemoglobin carries oxygen around the body, so I was also exhausted from doing the most basic tasks like walking up the stairs. It was damaging to my pride and depressing to have someone do everything for me, when I am usually very independent. Secondly my platelets that clot blood would also be reduced, causing random bruises and reduced ability to clot if I got cut. But third and most dangerous was the reduction in white blood cells. This was my immune system and sometimes I would become neutropenic (no white blood cells). I had to be anal about germs and cleanliness and it tuned me boarder line OCD. This was also massively tasking and draining. When I was at my worst I couldn’t be in busy public places and sometimes bed bound which meant I was a bit of a social recluse. Three times I ended up being rushed to hospital due to a high temperature, which is the first sign of infection, and being placed on a strong antibiotic drip for 3-4 days. The thought of this happening and when it did was also very depressing and made me extremely anxious. As if I wasn’t already spending enough of my life in hospitals this year!
Like a lot of the experiences you encounter when facing cancer, a lot of it comes down to understanding everything and prepare for it the best you can. We did so much research. We read everything we could and found out what to expect and what would help to make it as easy and comfortable as possible. Like sport and training the moto is always preparation prevents piss poor performance!
This is early on just as my hair started to fall out. Before I lost a lot of weight and colour!
2 Comments
Jules, I wouldn’t say that I knew a lot but I know you a lot better now than I ever did. We are all very glad to know that you are at much better place than you were few months ago. I would love to be there to toast a glass for kicking the big C’s ass-assassination.
Almost all good writing begins with terrible first effort but I can not say the same about your’s. I felt your trauma and pain from start to finish. Your writing is succinct and impeccable.
“Write something that’s worth fighting over. Because that’s how you change things. That’s how you create something.”
November 1, 2015 at 9:44 pmThanks Pras. Lovely words mate x
November 11, 2015 at 8:02 pm