Hi everyone, I'm not very good with tech, and I've never really done any web chats, embarrassing for a 42 year old I know but bear with me!
I have been diagnosed with a snuc during lockdown that has spread to the lymph nodes in my neck and also into the brain cavity. I have had 2 rounds of chemotherapy so far and I am due to start a combined chemo and radiotherapy treatment on the 13th July. It will be radiotherapy 5 days a week for 6weeks and chemotherapy once a week during those 6 weeks.
I'm just wondering if anyone has had a similar treatment in a similar area and could offer me a bit of advice about what to expect, I've been told it probably will be quite hard going but any helpful advice or pointers would be really appreciated.
Colouring in book is a very good shout Dee! Walks not possible at the moment cause the hospitals are still putting all precautions in place for covid and shielding certain patients so I'm confined to the room but hey I got a room to myself so I cant grumble.
I cant get enough of the food, I got the mouth full of ulcers back and a sore throat from all the swabs but I'm so hungry all the time, they think I'm weird in here, I'm devouring everything they bring out and I could go for seconds, I dont think they have ever seen anyone lapping up hospital food like me before, they probably think my wife is starving me at home!!
Cheers for your messages Dee they keep my spirits up and help me pass the time between eating
Aww Chippy! U should just ask for seconds! They probably throw out what's left, they'd probably be only too glad to see it go to a good home!
Chippy the ulcers are awful, have they gave u anything for that? U should ask for Fluxocillin, that cleared up my ulcers!
It's a shame u can't get out for danders but brilliant u got ur own room!
Has the bleed stopped yet Chippy?
Yeah it seems to, so stopping the blood thinners definitely worked for that but I dont know how they are going to juggle treating the clot and managing the bleeding.
I'm having an ultrasound tomorrow morning to confirm whether or not it is a clot but I'm keeping fingers and toes crossed that it isn't cause that would save so much hassle.
Is that Fluxocillin instant or does it take a few days to work?
Chippy I'm keeping everything crossed for u too. Well it was the doc on call prescribed it for me after radiotherapy, I wasn't in good nick, he gave me 3 bottles which was a weeks course and from what I remember it did clear them up and eased the pain but it took a week. Chippy I also found dissolving two 300mg of aspirin in a small amount of water, just enough to give u a mouthful, and used as a rinse really helped me, its painful to do but if u can tholl it, it'll give u a few hours relief...
Good luck today Chippy
Cheers Dee, turns out there is 2 clots in the arm though, they have just come in to see me and said they are going to start on the blood thinners again but a slightly lower dose and see how things play out.
Ahh Chippy? I was praying it wasn't a clot. But 2 clots? U don't do things by halves Chippy! Well hopefully the lower dose will work and the nose won't bleed.... U ok? How u feeling?
Yeah I'm good thanks Dee. At least if it does start again I'm in the best place to sort it out. I feel bad for my wife at home looking after our little one on her own but I dont know how much of a help I was after chemo anyway.
A nurse just come to take the PICC line out but its clamped into position so it doesn't go in or out, I dont think she has seen that before and she went to pull on it and the sweat started dripping out of me in milliseconds!! I think all the colour must of drained out of me too cause she quickly taped it back up and got on phone saying she had never seen one clamped before and why were they asking her to remove it.
Other than that I think I'm becoming a bit of a face on the ward now which is benefiting me food wise, now I'm getting toast and cornflakes, and I asked for a portion of cauliflower cheese, which is supposed to be a main course as a side to my sausage and mash and they let me!
How you been today Dee?
Oh Chippy the sweat was flying outa me reading that! Are they gona take yours out soon?
Uck Chippy I'm sure she understands that, but I'm sure u really miss them too cos they probably can't visit? Maybe she's glad of the peace and quiet?!
And I'm soo glad ur getting fed! If u don't ask u don't get, eh?! I really think they're only too glad to feed the patients cos I'm pretty sure it goes in the bin! And if u asked for more they'd have to be pretty mean to say no!
Yeah I'm ok Chippy! Online shopping is brilliant, I'll just leave it at that
I agree, online shopping is brilliant!
I think secretly, well actually not secretly at all, I know she is loving having complete control of the TV remote!
It would be lovely if they could come and visit though, just makes you think all those people stuck in hospital long term and they cant have any visitors, so sad.
I think they might have replaced the bin with me Dee, which I'm happy about!
Another ENT specialist came in after the nurse and he managed to take the thing holding the tube apart get the tube out and then it was weird, he had to pinch this orange thing together to close a metal anchor inside the vein and allow the whole thing to be pulled out. He took a load of photos of it cause he said he'd never seen one like that before!!
Oh Chippy, it sounds like the aliens put yours in! I know there's a hook in the inside that keeps it in place in ur arm, i had a bit of bother with mine but nothing compared to u! So is that it out now Chippy? U can shower in peace without worrying about getting it wet!
How's the nose bleeds Chippy, staying away i hope?
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