Waking up on that Sunday morning (the morning after the night before!) still feels very surreal.
Being home was one thing but the after effects both physical and mentally were profound. As I woke up I could feel the weakness in my body, trying to lift myself to get out of bed felt like a challenge in itself. I recall walking over to the toilet for a morning pee and looking for the measuring jug.
Ok, lets rewind a few days……..basically, whilst having a 5 day cycle of chemotherapy the nurses need to make sure your body is passing the right amount of fluids. It’s basically checking your system is working as it should be. That meant, every time I went for a pee I had to do it in a jug, measure it and write it down on a ‘fluid’ chart. I’d do the same every time I had a drink.
Back to present day, and like it or not this had become the ‘norm’ for me. So there I was stood by the toilet looking for the measuring jug. Then I realised, no more measuring, at least for the next 10 days.
So what other side effects and feelings did I have this first day and few days back at home that you may have if you’re going through a similar regime? Here’s the one’s I can recall most vividly.
Mental side effects (week 1):
- Hearing the sound of the ‘bleep’ in the ward when patients needed their help. This was especially vivid at night when trying to go to sleep.
- Hearing the noise of the machine that pumped the treatment in to me via the canular, again, this became worse when trying to go to sleep.
- Thinking I still had my canular line in my arm and being conscious I’d pull it out when sleeping.
- Very dark thoughts when going to sleep. Am I dying? Why me? What did I do wrong? What’s going on inside my body? What if I’ve got inflammation my lungs (life threatening side effect from BEP chemotherapy) Will I ever get back to normal? Lots and lots of thoughts that would ‘haunt’ me as I tried to sleep.
- A lot of reflection, this is quite normal. You start to evaluate your life, what you’ve done in it, what you’d do differently, what you’d do just to be able to go back to ‘normal’.
- Frustration. It didn’t help it was freezing cold outside and snowing the first week I was out, which was very limiting in the fact I couldn’t go out due to the risk of getting an infection / cold. I started to get very frustrated being house bound. Even our doggy Lola didn’t want to go outside!!
- Being upset that certain people I thought I’d have heard from hadn’t been in touch. It doesn’t matter how many people, friends, family or colleagues reach out, you (I) would keep thinking, why hasn’t xyz been in touch?
Before I move on to the physical side effects I want to make a point. I had a type of cancer which was curable. I’d been told it was highly likely I’d be cured. Nothing to worry about then, right? Your mind, or certainly my mind didn’t work like that. The fact Id been diagnosed and gone through a week or treatment like I had made this a very scary experience. Even with the amazing team of doctors I had, I was still worried. If you’re worried, don’t feel guilty or weak, it is natural. Just stay strong and listen to the advice your doctors, nurses, family and friends offer.
Physical side effects (week 1):
- Smell of treatment. I mentioned it my last blog post but the smell of the drugs was quite strong to me.
- No strength or energy. Literally, depleted. Getting up and down the stairs at home was tough for the first 1-3 days after being out.
- Dislike to smells and tastes – your senses can really change. Mine certainly did. I didn’t loose my appetite but I became very picky as to what I would eat.
Side effects can and will be different for each individual, but hopefully this list which covers what I remember may help you when questioning yourself or ‘is what I’m experiencing normal’ when you or a loved one are going through treatment.
To finish, I want to emphasise how I got through my first week after treatment due to the strong support of my wife Robin, my parents (my mum and dad would visit me every day whilst Robin worked), my sister and some of our friends. Unfortunately, there will be some people including friends / colleagues and distant relatives that don’t check in to see how you, or those close to you that are on the ‘journey’ with you are doing. The advice I’d give to ‘myself’ looking back would be not to waste your time or energy on worrying or being upset about it. Those that truly care are those that you’re already hearing from.
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