I think this one will be about how chemo makes me feel. It’s a difficult one to explain but also it might be something that not everyone feels when they have chemo. This is my reaction to the drug. And it’s difficult to explain when the effects have worn off because I try my hardest to remember how it makes me feel but at the time that’s all I feel but when I’m better I forget. Sounds crazy, right! But everything is so easily forgotten when you feel better.
So there is a thing called chemo brain. And I guess that is what I’m suffering with at the end of the day but that’s not really what I thought it would be called. Chemo brain sounds like you’re forgetful or it affects your mental ability… And I guess in a way it does. But my experience is nothing to what I imagined.
So the day of chemo my reactions are all pretty immediate. I generally get a huge dose of antihistamines, which is basically a syringe full of Pirton. This is to help my body cope with the chemo paclitaxel… You know, first time anaphylaxis. This prevents any reactions occurring but it also makes me very very drowsy. So pretty much for the day of chemo I’m in and out of sleep. It’s a great way of killing an 8 hour day but it still drags… And my poor mum still has to suffer through it along with me.
One of the first things to change with chemo is my taste. This doesn’t normally last. Just for 4-5 days. I’m not sure how I can explain it, it’s like I’ve got wax in my mouth or my mouth is all cotton wool like, I can’t taste flavours as well, and things aren’t as appealing. I struggle to eat meat at this point coz the texture of it can be very off putting.
Followed closely from the tastelessness is the nausea. This is probably a big factor to the chemo reactions. As I suffer with nausea this means that my appetite reduces. It’s tough to find what I fancy to eat and I try so hard to eat what’s good for me. I have 4/5 different types of anti-nausea pills which help combat any actual sickness but it makes my mouth even more woolly and changes tastes even more.
Chemo affects you mentally too. I go very spaced out for a few days. I find it better on these days when people don’t talk to me. It sounds so silly but I find it so hard to concentrate on texts and function on what I should be saying. It sounds so crazy, right! It’s like there’s a massive fog over my brain that prevents me from focusing properly on what I should be doing. I zone out easily. I literally become some sort of chemo zombie. I don’t just think it’s in my head though. It weirdly affects my eye sight. Not in an awful way and it only lasts for about 3/4 days after and then I’m fine I just get this ring of haze around my sight and this makes focusing difficult. It’s like my brain just gives up trying to focus on what I should be doing.
I become a ghost to any social media and friends seem to know they won’t get a lot out of me on those days.
It all sounds so awful what I have to deal with when you say it out loud but you just have to deal with it. This is my life. If I want to be better then I have to deal with these after effects.
I have to apologise in advance for this post too. I’m still very foggy headed this morning so this post has taken me longer than usual to write and I’m sorry if it drags off in weird directions or doesn’t make much sense! It’s a real life struggle for me this zombie brain thing but it’s easier to explain when you’re actually mulling yourself through it then if I write it in a few days time when it’s a distant memory.
It’s been a good week this week. I mean a really good week. This is what I was hoping for going through chemo. I’d have my bad days but I’d also have my really good days where I feel normal again.
Its funny, I look at myself in the mirror and when it’s like now, a good day, I think this doesn’t look like a face of cancer. Unless you know me and what I’m going through you wouldn’t know what I’m battling. I guess it’s a good thing because I have a respite from having cancer dominate my life. I mean on my good days it’s still there lingering in the background. It’s the first thing people ask if I haven’t seen them in a while and I still have to take my daily dose if medication that I never had to do before. But I’m not that sickly person where it’s obvious what’s going on.
Nobody sees me on my bad days. And I mean nobody. The only people who have seen how horrendous my bad days are are my mum, dad and sister. You might think it strange because don’t get me wrong, I have a huge support network that would be there for me at a drop of a hat if I asked them to sit with me, but I just couldn’t do that. I’m not sure if it’s to protect them or me. There’s a sort of vulnerability being that exposed to someone. They’ll be seeing me at my absolute worst. Maybe I’m being completely selfish by doing this but I just don’t think I could handle it if they treated me differently. I don’t think my absolute closest people would intentionally do that but I don’t want to be treated like I’m fragile. And I don’t want them to carry around that burden of seeing me like that. It’s tough. It’s not pretty. And when it’s bad it’s bad but on the upside when it’s good it’s really good.
I’ve had a lot of conversations recently on the next stages of my treatment and how I’ll be going about it. I think I’ve got a better perspective of it all this time round. Last time I was in pain and I just wanted treatment to get started. I couldn’t tell you what I was thinking or what I was going through coz I can’t remember. I was taking a lot of pain meds and slept 80% of the time.
But this time, I’m aware of quite a lot. Like for example, my head hurts. And I don’t mean I have headaches but I can actually feel that my hair is going to fall out. It’s strange I didn’t know that you could feel it. I’ve never heard any stories of this before so am I the only one that can feel it? Or is it just not talked about? I didn’t feel it happening last time but that could be because I was in pain last time so did the pain of the cancer numb out the pain in my head? The only way I can explain it is it’s a bit like when you have a really bad cold where it’s bordering on flu and your hair hurts. To move it, to brush it, to touch it. Or maybe if you have a really tight ponytail and you take it down at the end of a day and you get that relief but it’s a little sore. It’s kinda like that. I can’t help but imagine these little bugs under my skin munching away on my hair follicles. Haha. I knew what was happening but it’s only on my head I can feel it. I can’t feel it on my arms or legs where other hair is. So maybe my head is just super sensitive at the minute. You might just think I’m being paranoid and a little sensitive to the fact that I know I’m going to lose my hair. I’m not. I can pull my hair out. It’s not normal to tug your hair and be able to see 10+ strands of hair in your hand. Go on, give it a go. I bet you won’t pull any out, maybe just 1 but not a lot. I got mum to clipper my hair the other week when I finished chemo. I didn’t see the point in the 80s bouffant if it was all gonna drop out. I don’t mind it clippered. I’ve been told I can pull it off. Haha.
Little things have become a little uncomfortable to me now that my head is so sore. Showering my hair takes a lot of courage to do. Just the shampooing motion through my hair hurts. It becomes a little less sensitive after about 5 minutes under the water but it doesn’t completely go away. Even pulling on a jumper over my head hurts. That was a discovery I found out this morning when I got dressed. 🙄 it’s even worse when I forget and I go and scratch an itch!
But other than the head, things are all really good! I’m out seeing a lot of friends this week. Gotta make the most of it whilst I can!! I bought a skateboard too! 😂 maybe I’m being a bit ambitious with that one but I thought it was a good idea! It’s giving me something to do and I can get about on my bad days. Because when it is a bad day I can’t walk very far so I figured on a skateboard I can go further! I don’t think my mum and dad think it’s a very smart idea but hey, it’s getting me out so they’re not gonna say anymore. In time, I guess we will see! Haha