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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?
Yeah that was exactly it Dee, folding the outside bit up closed the hook up so it could be pulled out. Yeah it's all out now so I'm going to have the mother of all showers when I get home
I'm back on the blood thinners and things seem to be holding off at moment, there is a constant trickle of bloody mucus from the right nostril again but that's pretty standard for me.
Dee I'm going to start a blog on here soon and I would like to mention finding you on here and a few bits from your experiences of having a snuc. When you said about how hard it was for you to find any kind of info or someone else with a snuc I thought maybe if I wrote a bit on here about my experience of it, it might be good for other people. I understand completely if you would rather I didn't, just let me know.
Well I'm glad Chippy, I felt so free when mines came out! Those plastic sleeves don't even work! Well hopefully it won't start back up so u can get out of there!
Chippy absolutely go for it, I'm thinking of doing a blog too but I want to get all the technical info 1st lol. I don't mind at all! U might make me famous maybe they'll turn it into a film
But yes, I couldn't find anything but case studies, long lengthy case studies. I did find a bit of info about a girl in Australia, I couldn't find her on Facebook as I wanted to make contact with he so I'd just accepted that I must be the only person in the world at this present time with this! And then along u came! My twin! Although I'd much rather u didn't have this shitty thing Chippy....
Hope you are okay and sorry to hear your in hospital Chippy and hopefully you be back home with your family soon.
Warrior Girl you have given me hope for my dad and I’m so happy you were given the all clear.
I don’t know if the lady you was talking about is the same lady I added as a friend her name is Lolie on here and she’s from Australia she had a tumour in her left maxillary sinus a couple of years ago.
Hi Mumswarriors3, I hope u are well and hope ur dad gets the all clear soon too.
No its not the same girl Mumswarriors3, this girl was called Julie and she had SNUC, its not your average bear lol.
This is it Dee, it's been so good for me knowing that someone else has been through a very similar thing.
Knowing how rare snuc is I was really lucky to find you on here, if they put it as a percentage what would the odds be?
For you, knowing that and not being able to find anyone else to talk to about it did get to me a bit, I wont lie.
It's how people find these genius ways of coping and navigating their way through what for most will be the hardest fight of their lives. Then the ones who come out the other side, all they want to do is help make it a bit easier for the next bunch, its incredible!
Hi Helen, hows your dad?
How are you bearing up? I'm fine, they're just monitoring me now to make sure the arm doesn't get any worse and the bleed doesn't start up again.
Other than that I'm just spending my days waiting for the sound of the food trolley trundling down the corridor.
I know Chippy, there's only something like 300 cases in the world but surely there's more than that Its only been around for about 30 years!
Yes its very touching Chippy, some of the stories on here would break ur heart and yet people just crack on with it, its admirable.
Just taking each day as it comes I think that’s the best way dad is in hospital at the moment as they have admitted him for pain management and to speed his biopsy along his having it done tomorrow now instead of the 7th that was a battle in it self but I have got an amazing service manager at the hospital in charge of neurosurgery who is fighting our corner.
he is also in a side room and got to stay in the room can’t even set him up on Netflix as his got double vision so struggle to watch and read things his gutted his missing the Chelsea and West Ham game hoping we get more answers and plan of action soon also they doing a mri scan on his liver tomorrow to see what the 2.5cm tumour they have found on his liver.
Fingers cross you be home soon and building up your strength to start your treatment mum had more shrinkage on her radiotherapy then her chemo.
Hoping you find the lady in Australia warrior girl
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