Cancervive diary
The Big C01 november 2011
guess what...my blood isn't normal!!!
Well that's what they're saying at the Anti-Coagulant clinic anyway!! They need to keep an eye on the INR result. Alaboratory test called an INR
(International Normalized
Ratio) measures the time it
takes for blood to clot and compares
it to an average.
Mine started off at 1.1, then went to 1.2, then 1.8 - it's supposed to be between 2 and 3, ideally 2.5 in the case of a DVT.
04 november 2011
still not going as it should.....
I've been having four (yes four!!!) injections a day and my stomach is so sore. I have bruises 10 inchies across and huge lumps everywhere - some as big as an egg and others smaller, but painful lumps all the same.
I've received some lovely "Get Well Soon" cards, it's nice to know that people care, I've been ill for so long most people just add it to the list of diseases I've got so far. My looks don't pity me, my Mum says. You can feel awful (as I do at the moment) but look OK so no one knows how badly you're feeling. Typical me huh!
I've also got a nasty cough/cold/sore throat now too which isn't helping. If it wasn't for that I'd feel loads better. I did ask at the Clinic if they'd like me to wait outside as it was a nasty cold/cough and they looked around at each other (bearing in mind it is also a Chemo Clinic too where patients wait to have their next chemo session and have no immune system to speak of) and said "No that's fine, just wait anywhere". They looked at me as if I was mad. I was only being cautious about other people as I know how easy it is to catch bugs when you have no immune system. So much for helping then. Although I did go and sit in the corner seat on it's own to keep away from people generally with my germs.
Anyway my INR is now 2.5 which is brilliant!!!!! Still got the injections though....booo....!!!!!
07 november 2011
oh dear, what is it doing now???
Yep, you guessed it, my INR is now 3.7 - what is it doing? Obviously the wrong thing! LOL!!!!
My blood has to go on to another machine to have a different test done so it takes ages. Sometimes I've been in the clinic from 10.15ish until 2.00'ish. Not much fun. Although at this hospital they have a gorgeous coffee machine, now you normally can't get a decent coffee from a machine but this one is lovely! I always try to have one when I'm here at appointments.
Cold is still going well. I've gone through so many boxes of tissues. How can one person have all this? Well I can!
10 november 2011
another blood test, different hospital
I thought I'd try the other hospital in the Trust, thinking it might be easier to get to and park....but it's not!!!! I'll be back to the normal Clinic on Monday!
The phlebotomist tried my left arm, nothing. Then she tried my right, still nothing, a but of a dig around and then....
ARGGGGHHHHHHHH!!!!!!
What the hell is that? It's just like an electric shock going down my arm and into my fingers. I've never had this before, what has happened I ask?
"Oh, I've touched a nerve - don't worry, it should go soon" she said. Phew, that was a shock in more ways than one!!! No pun inteded.
I was then securely strapped up, just in case it spurts she said as I use a crutch in the same arm.
Mind you I was still getting shocks all the time, not good.
14 november 2011
back at my usual anti-coag clinic
Back to normal, my second home! I asked the Nurse there about the shocks I'm still getting and she said if they don't go then see your GP.
Meanwhile - as you know - I've got to know quite a few Doctors and Medical Professionals and speaking to a couple they said there is absolutely NO EXCUSE for hitting a nerve in a patients arm. It just shouldn't happen. You can sue for medical negligence here. She should be reported etc. See your GP and get it logged.
Sometimes they go, and sometimes they don't. Great....!
It happens quite often and makes me drop whatever I'm holding, a pen, a cup, the phone. It just goes when it wants to no matter what I'm doing, even just sitting in a chair and it goes off! Really weird.
17 november 2011
back at the anti-coag again
Still got the shocks but I know there's nothing I can do about it. Just got to live with it for however long it happens. In fact it's going off now here, so I won't be on for long that's for sure. I also notice that when sitting in a hard chair I get twinges too so have to get up and down a lot and just wander.
Poor John, I think he's getting fed up with me walking around.
At least my INR is back to 2.5 now which is something, long may it continue. It went as high as 4.4 for quite a while which is too high! Also I'm off the injections now too, phew, that's a relief I can tell you. I know I had to have them but it doesn't mean I have to like it does it!!!
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This is just one of many bruises....some up to 10" across!
The one thing I never wanted to do in my life was inject myself, and here I am having done it 4 times a day for 10 days!!!! I'm quite proud of myself for doing that, I never thought I would. In fact at the hospital, John thought I'd bottle it too when she said I had to do it and she wanted to watch me.
Of course, it was after I'd done the first one and seeing the Consultant, I found out that you shouldn't do it above or below the belly button. So the Nurse told me the wrong place to do it! Great huh.
18 november 2011
my lovely nan's birthday - always remembered never forgotten
Oh how I miss my Nan so much!!!! I wish she was still here with us, but sadly she isn't. However my memories never fade (despite chemobrain!) and I love thinking of her often.
Happy Birthday Nan!
Also had to make an appointment to see the GP too. Was a bit concerned as if you book on the day you take pot luck with which GP you see. I don't mind most of them at our Surgery, apart from one.
The one who told me when I went to see a GP after 7 years of not seeing one with the pains in my leg that amongst other things to just "go and get a painkiller from the Chemist".
After tests, it turned out to be Non Hodgkins Lymphoma in the Bone. Now you know why I never want to see her again. She just made assumptions and judgements and shouldn't have!
So after speaking to the Receptionist she was really helpful and said if I went after a certain time then 100% I wouldn't see her. Phew.
It's stange, our Receptionists are well known for not being patient friendly and now they're polite and try to help - perhaps they've had MORE complaints. They've already changed the booking system due to "Patient Disatisfaction" !!! About time!
My Warfarin is now being changed and I'm having different amounts on different days. It's strange taking them as you know they are rat poison! Weird that a poison helps you get better, the same as chemo is a variety of poisons to kill off the cancer cells in your body.
Thank heaven for poison I say!!! LOL!!!
19 november 2011
oops - not had this before....
The Clinic always gives you a small questionnaire on the form you get, and this time instead of all NO's I've got a YES too. It asked if you had any bleeding since the last test....and my gums have been bleeding when I clean my teeth. They don't normally. I got a reply on the form to say "See Dentist re bleeding gums".
Luckily my Dentist opens on a Saturday morning, but that wasn't why I called. Remember my root canal I had done...well had done twice! Well it's crumbling and couple of small bits have come out.
I try not to fiddle with my tongue, but you know what it's like when something is wrong in the mouth, you fiddle!!! LOL!
After calling them I had to make an appointment for Monday instead as I couldn't get there in 30 minutes. Shame but it happens when you have to rely on others.
21 november 2011
at the dentist.....
As I had two things to ask about, I thought I might as well go. He's a lovely Dentist and doesn't do work that isn't needed. That's a relief, less money to pay out.
He had a look and said we have two choices, Plan A and Plan B. Plan B would be more expensive. Let's start with Plan A then!
It wouldn't be so expensive, but if it doesn't work then it's Plan B and that means about £900.......argghhhhh......I don't have that. So fingers crossed that Plan A works.
My appointment is now set for December. Why do you have to wait so long...I'd like it done asap so that it doesn't come out completely!!!!
Patience is a virtue, and as a long time patient of the NHS I'm used to it.....waiting.....more waiting.....what fun!
24 November 2011
anti-coag clinic again
Back at the hospital for yet another blood test. I think I can tell when my blood isn't right as my leg aches so much more than normal. I don't know if it's real or just in my mind, but what I do know is it's hard to even lift my leg to get in the car or into bed at night and then when I have another blood test, my INR has gone down again.
Strange huh!