Stop the ride I want to get off...

Tuesday, April 05, 2016

Hitting the ground running…

Well that was fun… NOT. The first dose of the new drug, Eribulin, went ok, better than the vinorelbine. But Dose 2 threw me a major wobble. I experienced, for the first time ever on chemo, the dreaded sore mouth. I knew it could be bad, having watched kids when Amy was ill suffer with it, but I had no idea how bad.

You’ve all had an ulcer… maybe a few… now imagine a mouth full of ulcers, you can feel ulcers down your throat and then all the glands in your mouth go nuts. Your saliva production grinds to a halt and the dreaded thrush takes over. Honestly I wanted to skin my tongue, gargle with liquid nitrogen and by the second week of struggling to even drink water, give up on this chemo lark. But I got through it, lost three kilos (Oncologist wasn’t happy but I was), and am crossing everything I can keep this as a one off.

After a few days, I worked out things I could just about swallow, cream of chicken soup and milk were good. I learnt that drinking with a straw worked really well, and most important eating with friends really helps. So having my best friend come to stay for two weeks as this all kicked off was a big blessing. We also went away for about ten days and that helped too, although I suspect she never wants to hear about a sore mouth ever again, sorry Jaye but thank you for putting up with me.

We had clinic today, and I will admit to losing the plot with my oncologist and having to step (okay stomp) out of his room to calm down. Why is it that these Doctors and nurses just can’t understand that we aren’t just a cancer patient, we come with a whole load of baggage. Mine is an irrational fear, you might even call it a phobia, of ingesting strange liquids, tastes and sniffing strange smells. So when they start listing off all the mouth washes and gels and gunk I should be using I’m ready to vomit on them just thinking about it. My fight or flight response kicks in and I just want to either punch them in the face, I know I can’t do that, so I run and I panic.

I panic because I know that I want to stay alive as long as possible, but what if I can’t cope with the side effects of achieving that. I want to be here for my kids but I’m also going into blind panic about all this stuff the Doctors keep chucking at me, with no sympathy for how I’m feeling. It does not help when said Doctor keeps on and on and on about how I will just have to get on with it. Uh no I won’t, and this seriously feels like being bullied, I remember being bullied. I WILL NOT be bullied again, I will get through this my way, work with me, find me simpler options first. When I calmed down and walked back in he said “Some of my ladies have found just salt water mouth washes very effective.” Facepalm!

So, tomorrow is the start of my second cycle of this stuff, let’s see how it goes. He has given me some drops to try swilling around my mouth called Nystatin, apparently they taste of marzipan? I’ll be the judge of that, and to be honest I can see me holding out to see if I can just get by without them. Why are medicines never chocolate flavoured?

The good news, I didn’t need a Picc line in the end as the infusion is only for five minutes and I can sit like a statue and grin and bear it that long. The pains in my side have gone away, which seemed to cheer up my oncologist and me. As usual we wait longer to go onto the chemo unit than it takes to have the drugs, but as we don’t have to pay over here and they are all working their bloody socks off in there I don’t mind too much. Unless I get stuck next to THAT patient… but then I suspect to many I am THAT patient…. Muhahahaha….

See you on the other side folks, cross everything for no sore mouth. XXXXX


Blogger Sammi Fletcher said...

You're amazing missus! Hoping this round goes smoothly xxx

9:55 pm  

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