Five women on the thing that surprised them the most about chemotherapy.

 
My sharp sense of smell

“The immediate first changes for my body on day one were that I had super-strength smell after the first treatment. My soap, shampoo, my bedroom, my cupboards as I opened them, a scented candle – everything was too much and made me feel nauseous that first day. The kitchen was out of bounds especially as dinner was being made I could not handle the smells. The nausea was just awful and really makes you feel like doing nothing.

“My friends and family have been incredible and the most helpful things for me have been them just listening. Not advising or telling me what to do or coaching but listening to what I had to say and then offering up suggestions. For me voicing things that have felt silly or even trivial has helped immensely. It takes away their power once their spoken out loud. So just say the thing out loud no matter how trivial you might think it is.” –  Briony

Your mind is a fog

“From my experiences, when you’re on chemo the world is a strange place.

“Your head feels like it’s full of cotton wool – everything that’s happening around you is just sort of out of your focus. You can try to focus on something but with no luck, and you just can’t quite figure out what you’re meant to be thinking about. You might be listening to a conversation but not processing anything, not able to contribute in any way and may seem disinterested. You are exhausted, mentally, physically, emotionally. I used to try to distract myself from how sick I felt by reading – but I couldn’t comprehend what I was reading and would read sentences over and over and over until I got a headache and gave up. I would try to watch TV – but the noise and constantly shifting visual cues would be too much for my foggy brain to process, until I got a headache and gave up. I would try to go for a walk, but couldn’t get my body up off the couch.

“For me there is nothing more helpful than a friend just being with me and telling me about their day. Yes, I’m sick, I feel like I’m about to throw up at any moment, my head is pounding and I can’t keep my eyes open. BUT, a small distraction can be all it takes to help me forget all those terrible feelings. I may not be able to follow or contribute to the conversation, I may even be resting my eyes while you talk to me, but I’m listening and I’m not alone in my pain, which is probably the worst part of it all – sitting alone feeling helpless just waiting for it to end.” – Alysha

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The changes in my weight

“For me, two things surprised me the most. The first was the weight I gained, which is apparently common with breast cancer patients receiving chemotherapy.

“The other thing I wasn’t expecting was how quickly and unexpectedly you go from feeling great to feeling like you are going to die because you just feel so unwell. Sometimes I actually thought I would have prefer to die than to have to feel that unwell.” – Linda

I didn’t realise my identity was tied to my hair

“I am not a particularly vain person, but I was surprised by how much I struggled losing my hair. I don’t have long hair – in fact, my hair has always been short and pixie-like. But when I lost it, I felt my identity was in no-man’s-land.

“Of course, it’s a small price to pay for having your life saved by medicine. For every piece of hair I lost, the closer I was to getting better. I just surprised myself by how much I cared, at that time, about having no hair.” – Tanya

The feelings of isolation

“The most surprising aspect of my husband’s chemotherapy was the isolation and loneliness. We both found the experience rather surprising in that aspect – he would be getting treatment for hours at a time in that chair, and the weeks stretched on and on. I remember feeling like it would never end. If I’m honest, the experience did prepare me for the grief that came months later. I was mentally preparing myself to lose him and to be a widower, over those many afternoons, and over the many hours, he spent getting chemotherapy. The hours he was in that chair were when I grieved him the most of all, even after he died.” – Maureen

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