Chemotherapy - it's all getting too much...

Body just feels so toxic

I can't quite remember exactly when it was but sometime in February 2018 between chemotherapy cycles 4 and 5 I’d had enough.  I’d reached that point where my body was feeling the full cumulative effects of the chemotherapy and it was screaming at me to just stop the chemotherapy, stop the pain, stop the tiredness, stop the emotional rollercoaster and just stop feeling so ill.  My mind was battling itself in so much as I needed to carry on and take all the treatments possible in order to extinguish the cancer from my body but at the same time I was struggling with dealing with the physical and emotional effects that the chemotherapy drugs and the steroids were having on me.  I felt like I was being poisoned.  I felt the huge level of toxicity.  I felt like each and every one of the cells in my body was slowly dying.  It just felt horrendous.

Sure enough I have very little patience and anyone who knows me will say that patience isn’t one of my virtues especially when it comes to anything that slows me down and stops me from doing what I want and that’s how I get with illness.  I have no patience for my body getting ill in the first place, I have no patience with the germ warfare battle when it’s in full swing with the immune system springing into action to kill off whatever germs may be attacking me and I certainly have no patience when it comes to recovering.  I just want to get on with it.  I guess I still think like a kid in that respect – I have this fantasyland that I am superhuman….which I most definitely am not otherwise I wouldn’t have had cancerous cells in the first place.

I remember that Wednesday morning when I awoke in February 2018 and I thought “That’s it. No more. I’ve had enough. No more chemotherapy.  No more poisoning of my body. No more being bald. I’m done.”  I felt like I was screaming internally, I felt like all the healthy cells in my body were screaming at me that they’d had enough, they’d had enough of the chemotherapy drugs, they’d had enough of being poisoned by the drugs.  I sat for a fair while that morning in tears, partly crying at the effects my body were feeling but partly that the realisation that I was only just over halfway  through the chemotherapy cycles dawned on me.  I just didn’t feel I had the strength to go on anymore with the chemotherapy.  The relentless nausea and the ulcers in my mouth, on my tongue and in my throat were just becoming too much.  My digestive system was suffering, it felt like it was slowly being killed off. 

I sent a Whats App to Gary late that morning to say that I was done. I wasn’t having anymore chemotherapy.  I was struggling with the side effects and I just couldn’t do it anymore.  Several exchanges of messages culminated in Gary ringing me during his lunch hour as he could see my messages were getting more upsetting and of a darker content.  He said he fully understood that it was my decision if I wanted to stop the chemotherapy treatment but as I was half way through, the end goal of cycle 6 was in sight.  I remember almost hysterically at this point and through tears streaming down my face, saying to Gary that I was fed up of the Oncologists and Sarky Sue not listening to me about the side effects and that they just weren’t helping me to get them under some kind of control.  I just wanted them to listen and to listen properly.  I wanted them to experience the effects of chemotherapy drugs because if they did then they would have some empathy, they would have a better patient / clinician relationship and most of all they would experience first hand just how the toxic effects of chemotherapy can build up.

Our conversation must’ve helped because once I’d ended the call with Gary, I immediately emailed by BCN (breast care nurse) to request a meeting with the Oncologist to discuss my intention to have no further chemotherapy unless they could get the nausea and the ulcers under some kind of control.   A meeting with the Oncologist was set up pretty quickly by my BCN and I think at that time they were all wary of me stopping my treatment path.

I remember that afternoon sitting and telling myself that I didn’t want to stop the chemotherapy, I wanted to ensure that I had done everything possible to kill off any stray cancer cells in my body and to try and prevent the cancer returning either in my breast or elsewhere in my body.  I didn’t want to feel like a failure for admitting that I was struggling with the chemotherapy full stop and the way it had seemingly taken over and controlled my life.  I just wanted the side effects to be under some kind of control.   I also got thinking about my mum that afternoon and that produced yet more salty tears.  My mum hadn’t really stood a chance with her own cancer diagnosis, by the time her primary lung tumour was diagnosed it later became evident that the cancer cells had spread to her brain because 4 months later she died from brain mets.  That is a day I will also never forget.  I remember saying out loud to my mum that I needed her guidance, I needed her strength to help me get through my cancer treatment and most of all I was so desperately wanting her arms around me to tell me that it was OK, that what I was feeling was normal and that she was there to support me.  No matter what age I am, I still always feel the huge hole in my life left behind after my mum died.

Prior to my Oncology meeting I sat and made a list of side effects I was experiencing from the chemotherapy and discussed them with the Oncologist at the appointment.    During my Oncology appointment the Oncologist actually sat and listened to what I had to say and when I showed her a photograph of the mouth ulcers I had experienced that and every other cycles, she was shocked and said it was amongst the worst reactions that she had seen.  She confirmed that my digestive system was struggling with the chemotherapy drugs and that as a result of the mouth ulcers she would reduce my chemotherapy dosage by 20% for my remaining chemotherapy cycles which should help with the mouth ulcers.  I queried whether reducing the dosage would mean the chemotherapy wouldn’t be as effective and she said that the reduced dosage wouldn’t effect the efficacy of the drugs but it should help to reduce the side effects and hopefully reduce the level of toxicity.  I left that Oncology appointment feeling hopeful and decided that no matter what, I had two chemotherapy cycles left and that I would most definitely make sure that I had those chemotherapy infusions. 

The reduced dosage 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.  BUT, I still went on and completed those remaining two cycles and I will forever be proud of myself for continuing despite how bad I felt.  I got the strength from somewhere....and I think some of it was spiritually from my mum.