A level of toxicity like never before

Chemotherapy side effects and me

I guess I wasn’t really sure about how chemotherapy would affect me. Once I knew what the two drugs were called that I was going to have, in my case Epirubicin and Cyclophosphamide I decided to do some research on them. You see, I’m one of those people who likes to be informed, I wanted to know what these toxic drugs were that were going to be pumped through my tiny veins on 6 separate occasions over an 18 week period. I wanted to know what effects that they might have on my body with a rough idea of what to expect. Sure enough my Chemotherapy Nurse Coordinator, the delightful Sarky Sue had given me a standard hospital issue document but I wanted to know more.

So off I went to do the research online and used good old “Doctor Google” to type in Epirubicin and Cyclophosphamide. What I found was a whole plethora of website links that were returned – in that instant it felt like brain overload again, too much information to digest. So I did the pretty sensible thing and just stuck to the main cancer information sites – Breast Cancer Care, Breast Cancer Now, Cancer Research and MacMillian. I knew these were authorised charities and that their information would be based more on evidence rather than speculation, inaccurate information or just plain old scare mongering.

There seemed to be a bit of a theme – nausea, tiredness, risk of infection, sore mouth, bruising, bleeding, hairloss and in the case of Cyclophosphamide, bladder irritation. The anxiety levels started to ramp up again. I remember thinking to myself “am I going to be able to do this?  Am I going to be able to face going to the hospital every three weeks to have these poweful cytotoxic drugs pumped into my veins?”  It just seemed so surreal. I still couldn't believe that this was happening to me, I still couldn't believe that I'd only 7 weeks earlier been told that I had breast cancer. It still just seemed like I was in this surreal dreamlike world where I would eventually wake up and realise it had all been a bad dream. But it wasn't a bad dream. This was happening. I was to be given chemotherapy drugs and to be perfectly honest I was completely shit scared. I was frightened, I was apprehensive and I was scared stiff of having an allergic reaction to the chemotherapy medication. I have a severe penicillin allergy which manifested when I was just 3 years old that was potentially life threatening so I've always had a fear of taking medication ever since of any description and sometimes have been so worried about side effects that I didn't take the prescribed medication which I know is stupid and I don't advocate anyone goes against any medical advice they are given by a medical professional. I knew that there was no way of me getting away from having the chemotherapy drugs if I wanted to give myself the best shot at ejecting the cancer and any rogue cancer cells from my body. My mind was in anxiety overdrive and to be honest I genuinely think I was more worried about the side effects of the chemotherapy drugs than of the actual drugs themselves. In the end, reading about the effects was one thing but experiencing them was another thing altogether.

I won't lie. Me and chemotherapy, particularly the drug Epirubicin just didn't get along. We didn't see eye to eye at all and my mouth and digestive system felt like they were screaming at me for a solid 18 weeks. I know others who had hardly any problems with it at all but for me, Epirubicin felt like it was definitely killing my fast growing cells and not just any cancerous ones but healthy ones also. I simply hated the bloody drug and still even now, the very word “Epirubicin” or seeing an image of it in a cannula or a syringe causes my stomach to do somersaults, I get the nauseous feeling in the back of my throat and my hairs stand on end on my arms and the back of my neck. Epirubicin felt like my kryptonite.

For me the nausea was relentless. I was given the “Rolls Royce” of anti-sickness medication prior to each infusion but its effects were extremely short lived as in my experience with chemotherapy, the nausea started within three to four hours of the infusion of the chemotherapy drugs being administered. The “Rolls Royce” of anti-sickness medication was supposed to last for up to 5 days. In my case it failed. The strong steroids I had to take for 3 days post chemotherapy infusion called Dexamethasone were supposed to help with the nausea. In my case it failed. I was given an anti-sickness medication called Metclopromide to try during that first chemotherapy cycle. Again it failed me. From chemotherapy cycle two I was given another anti-sickness medication called Cyclizine and although this one did actually help just a small amount, I never for 2 weeks out of every 3 was free from nausea. It felt like my body was physically trying to reject the chemotherapy – it knew it was a toxic drug and it wanted to be rid of it. I guess my body was doing its job – it was trying to expel the toxicity.

Mouth ulcers were next on the list. They started around day 5 of every single chemotherapy infusion. It was almost like the steroids kept them at bay and then boom as soon as the steroids weren’t being taken then it was “hello mouth ulcers”. They always started off in the same way with white patches across the entire archway of my mouth and then on my tonsils, my cheeks, my tongue. As the cycles progressed, these would start to go down the back of my throat and it felt like my oesophagus. 

In the end my Oncologist reduced the dosage of the Epirubicin on my final two cycles to help combat the mouth ulcers as she said it should help with the big reaction I was having. It did alleviate it but I still had the ulcers for cycles 5 and 6. With these white patches came the worst taste in my mouth ever. I will never forget the taste. That rancid, pond water like taste will stay with me forever. No matter what I ate, whatever I drank that damn taste would be there – it was like it was taunting me morning, noon and night. That taste would last for around 3 to 4 days every cycle and this pond water like taste would only add to the nausea, it was like a vicious cycle.

Hair loss. Enough said. It was awful and I felt like I lost all sense of my femininity and my identity and I have written a whole other blog about it. Hair loss wasn't just my head hair but it was everywhere across my body and I mean everywhere. My eyebrows and eyelashes battled on with them only thinning out which I guess I was lucky about. But on the plus side, it did mean that I didn't have to shave under my arms, my legs or intimate area for a good three months which was a bonus! My hair did start to grow back albeit with a light fuzz at the beginning of cycle 5 which I was told by the Oncologist can be common.

Fatigue. What an interesting word. Before I had a cancer diagnosis, I used to think, somewhat foolishly that fatigue meant being extremely tired and I will admit, I used to think some people I knew used it as an excuse just not to get off the sofa. Now that I've experienced cancer treatment, I know what fatigue feels like. Whilst I was on the steriods I wasn't too bad but on day 5 every since cycle it was a case of boom – fatigue set in, it was like the steroids were doing their job, they were propping me up. On day 5 I just felt completely exhausted, just getting up to go to the toilet or to make a drink became a task in itself. It felt like my body weight had doubled overnight and that my limbs felt heavy. There were several occasions where I would literally have to go up the stairs on my hands and knees and then have a rest at the top of the stairs to muster the energy to get to the sofa. Yes I know now what fatigue feels like and I fully respect others who have a daily struggle with it.

Digestive issues. I think this one went hand in hand with the nausea if I'm completely honest. Me and my digestive system particularly my tum and my bowels have a rocky relationship at the best of times when it comes to stress and anxiety. My gut at times feels like my achilles heel, my gut lets me know when I am anxious, stressed or nervous before my brain engages and realises. They say that the majority of serotonin, the feel good hormone, is actually in your stomach rather than your brain and I can identify with that because if my mind is upset then my tum follows suit and vice versa, it's like a vicious circle. During chemotherapy I had a lot of bloating, cramps and acid reflux, so much so that for the first 10 days of each chemotherapy infusion I used to have to sleep propped up by an additional pillow to try and stop the stomach acid coming back up my throat. I did take Lansoprazole that was prescribed by the Oncologist to reduce the stomach acid but it didn't really sort the problem out.

As my chemotherapy cycles progressed I also started to have good old constipation for 7 days, which prior to a cancer diagnosis was not something that I ever really suffered with. I blame the steroids wholeheartedly for the constipation because a couple of days after finishing them, my bowels “woke up” so to speak.

Taste changes, now I know that I mentioned the pond water like taste but I also noticed that I started to have changes to my taste. Pretty much from cycle 1 of chemotherapy I started to crave salt and anything that was salty. Why? I have no idea! Whether it's because it can be a strong taste I'm not sure but I lived on bacon for 3-4 days at the start of each chemotherapy cycle because I craved salt. I didn't have the bacon on it's own, I had a hash brown and made a sandwich out of it – all grilled of course! I also started to have problems with anything that tasted sugary – it was like I couldn't stand anything too sweet and anything containing sugar just started to give me a strange taste in my mouth. I can't explain what it tasted like other than just odd but it did help to diminish my one vice in life – chocolate. I got to the point where for a good week every cycle that I couldn't stand the taste of chocolate at all. It just tasted odd. It's a shame that didn't last after the chemotherapy finished!

Bladder irritation and I mean irritation.  This was purely down to the Cycolophosphamide as it is known to cause irritation to the lining of the bladder and I certainly know all about this effect.  It felt like I had a urinary infection for at least a week every single chemotherapy cycle.  It gave the same feeling of urgency to wee, the burning sensation when weeing and the dull pain behind the pubic bone.  I was tested for a urine infection every cycle and everytime it came back negative.  It was a symptom that lasted a couple months after my last chemotherapy cycle.  But my advice if you every experience this - drink plenty of fluids to keep the bladder flushing through.  That was what the hospital told me to do and it did help.

Risk of infection due to low levels of white infection fighting cells.  This I know only too well about and was hospitalised during chemo cycle 2 but there is a full blog about this coming soon.

If you are about to start chemotherapy or already along the path with it then please don't let the above side effects I experienced worry you. As I've said, these are the effects that chemotherapy had on me and the effects can be different for everyone as we're all genetically different. If you are currently going through chemotherapy then if there is one bit of advice I would give you it would be that you tell your Oncologist or your Chemotherapy Nurse Coordinator about any and all side effects that you experience because for the most part there will be something that they can give you to help ease the side effects.