Lots of info here! Maybe not the most exciting post but hey, here we go!
On Friday I went in for my blood test expecting my haemoglobin to be low (they booked me in for a transfusion because they thought it would be. I was right on the borderline so… yay!!! Didn’t have to!!!), and expecting my neutrophils to be low too and they were hiiiiiigh!!!!
So that meant I could leave the house! And go into work eventually! Of course I still get exhausted very easily so it’ll be short trips.
I decided to go out to a friend’s birthday drinks for a couple of hours on Friday night, which was great fun though tiring. Took it pretty easy the rest of the weekend.
Yesterday I had my Gfr (Kidney test) to just double check my kidneys are in fact too damaged to finish my chemo. Mixed emotions about that, obviously. Interestingly, my dad said he found a study where they weren’t even using Methotrexate at all, and results were positive. Katrina also mentioned that in Oxford they’re talking about only treating sarcoma with 4 cycles of chemo anyway. Also interesting! So I’m sure it’ll be fine.
Anyway, what fun side effects do I have for you today?
My feet and hands are getting more numb. Looks like when the oncologist said ‘it might get worse before it gets better’, my body thought ‘ooh yeah! Ok why not!’ But the important thing is that it will get better. Not sure if it will recover 100% but I’ll get back to you in 6 months or so when it’s meant to start improving. It does some other weird things too. Like shudders this weird nerve twinge thing through my feet and arms. Particularly when I’m lying down or in the bath. Not painful, just unpleasant. I had to run for the bus yesterday and it was going all through my arms and legs doing this weird thing that I really don’t know how to explain. You know how when you’re exercising and something clicks weirdly? Not like cracking, just like something rubbing on something or clicking over something. It’s kind of like that. But nerve based. Weird. Sometimes I feel my pulse beating in my feet also, with this weird numbness coursing through. ALL VERY STRANGE FEELING. Holding a pen is getting difficult too. And I can’t feel if I step on something.
Let’s see if I can explain this next one.
Sometimes when my heart beats it sends shudders of pain through my chest and right down my back if I’m sitting down. From my shoulders down to my tail bone. Not like… Fear-of-heart-attack sort of pain I don’t think (though I’ve had that too). Just a weird like… Throbbing pain through my body when my heart beats. Weird. It’s not intolerable pain, but it does make me wince. That’s a weird one. It only happens sometimes but I’ll have a day when it does it regularly then stops for a while. It did it a lot yesterday, but only once today. I think it happens when I do things other than just sitting and resting. My pulse is easily elevated at the moment too. Another echocardiogram (heart test) to come soon, I’m told.
And as is to be expected, I’m exhausted. Most things exhaust me. I actually read the other day that this can be the case for like 2 years or so post chemo. And that it can take that long to build up any sort of fitness again. So that will be interesting. I’m definitely feeling more exhausted all of the time now though, before I would have good days and bad days. Now it’s just most of the time. It’s difficult because I’m usually so busy and active! But I’m getting better at letting myself rest. I keep thinking I need to push myself to go into work but that’s probably not really useful to anyone. So I will go in but if I’m not up to it… Well… I won’t.
Mouth ulcers too obviously. Always so fun. Currently on soft food though not liquids so hopefully this is as bad as it’s going to get this time!
Also injections are all done for this round, only 7 more to go after my next treatment! I never enjoy doing them, but with the excess anxiety about them gone, it makes such a difference! And it makes me feel like a bit of a boss everytime I succeed at one.
And I think that’s all for now!
6 Comments Add yours
I think where Methotrexate was not used, then another agent was used instead. This was also useful in eg poorer countries where the dangerous side effects of Methotrexate were not so well monitored. Reading between the lines it looked like Methotrexate was usually still the poison of choice.
Well… that’s less reassuring…
Ooh about those odd and uncomfortable side effects! I hope you get your own body back soon!
Oh my goodness, I know! I will be pretty happy when I don’t have side effects anymore!! Just all my usual pains and health issues haha.
Hopefully it won’t take me 2 years…
Stick at it Jen. Everyone here are with you. Pat and family.
Thank you!! Doing well 😊