Cancervive diary
The Big C01 february 2008
uch, lymphoedema clinic
I'd almost forgotten about this appointment in the midst of all the blood tests and stuff.
Picked up at 11am, slightly early for a 2pm appointment but I might even have time for a coffee. How wrong was I to be...?
Very wrong! It took 2 1/4 hours (from memory don't quote me!) and we saw all different parts of London, Harrods, China Town, and when I said this to John - he said 'you went where? no wonder if took so long'.
Anyway I was in the building now, so forget the horrendous journey and think of what is going to happen next.
Whilst waiting outside the clinic Dr Cassoni went past and looked puzzled. I said it was the 'Lymphoedema Clinic' and that I'd had my CT/MRI scan and was booked in to see her next week. She said 'Good' and then had to rush off more or less...a Doctors life is always busy!
I've not been able to wear my new stockings due to the lumps and intense pain. I'd have to admit that. So when I saw Kay I mentioned it to her and she had a look at 'ye olde leg' and didn't know what to make of it.
After explaining about the MRI'CT scan and that I would be seeing Dr Cassoni next week she said there's not a lot they can do until the results come back. So it was a bit of a waste of time, although I did get some 'lesser compression stockings' to wear which might help.
Sadly they are not custom ones so they are very short and they do fall down. They also seem quite painful, not sure if it's cos they are a different material or what. Have to persevere and see how it goes.
I asked about the new thing my Oz friends have told me about and she knew nothing about them so I said I'd have to send her some info on it. The amount of times I know things that some Medical Professionals don't. Mind you they can't know everything and I accept and understand that. More of which later.....
Also she said she'd not seen anything like it before, it's like a band has been tied around the leg too tightly and not taken off. It is also a blue shade, similar to my toes, parts of it are hot, parts of it are cold, parts of it are super sensitive...! Depending on the results next week, she might consider referring me to a Professor at St George's to check it out. Another puzzle....I'm a medical puzzle, that's what I am!
So now I had one black leg and one skin coloured one (different stockings!) which looked odd but it was too painful to take it off and put the other one on. I went back to the Desk and had a word with Pauline and a bit of a giggle. She gave me all her latest news and then I went to the Transport Waiting Room...and waited...and waited...and waited....
Eventually almost 2 hrs later I went back to the Desk and asked if I'd been forgotten. Guess what....nah you don't need to guess. Another 20-30 mins I was told and someone would collect me.
Ho hum, back to the waiting room, at least I could go to the loo now without fear of missing my turn!
Finally a driver arrived and we started to journey off. We had to call in at the 'Heart Hospital' to collect another lady to take her home. She seemed OK, and I helped her with her bag so she could get in the car. After a bit of conversation I realised she was one of those people who either doesn't listen or is partially deaf and just went on talking and didn't respond to answers.
It was a bit of a nightmare trying to get home too, traffic was bad, he didn't have her correct address, she kept saying her address and postcode kept changing. I wasn't convinced but we eventually found out where she lived and got her home safely. Then it was my turn to get home.
I eventually got home around 7pm, and boy was I ready to collapse.
Then there was another problem, I'd changed my bag over and forgot to put my house keys in it and there was no one home. I went across to a friend of ours and had to stay there for a while. All I wanted was some peace and quiet and a tv programme to nod off to....but I didn't get it....c'est la vie....such is life.
Anyway, more to follow later with the next exciting saga in the life of a patient!
04 february 2008
another hospital, another clinic, another waiting room....
Here I am again, happy as can be....well OK'ish. Just waiting to check what's going on here. A new numbering system is in operation and my number was 1412...I hope that doesn't mean there are 1411 in front of me!
The queue for the clinic was big'ish but I sat down. Luckily I had taken something to occupy me whilst waiting (apart from music) and got it out ready to start. I only managed to get the pen out and my name was called.
Obviously several other people in the queue weren't happy but it's not down to me. I just do as I'm told...well usually...! LOL!!
So I went in, put my bag down, Dr D smiled at me and we started looking at the blood tests. He had some news for me which was not good....well I didn't think it was...then it got a lot worse.
First of all, apparently I had some results from the Bone Scan and he reeled off about three lines of stuff and I asked him to translate it into understandable English laymans (or womens!) terms. So he did.
I now have....get this....a new Syndrome. It's a fairly rare one and he had to look it up and he showed me all about it. Sadly I didn't take the details of the website he was looking at but I've since found others and it is rare, it's not curable, it can get worse...get the picture...sound familiar....yes another one of those things.
It was so unusual that he asked permission to take photos of my leg, and also ask me how it feels. He also called in his Registrar to have a look and feel of it (carefully I told him!). It's something that needs to be checked out I imagine.
Then he dropped a bombshell. Well it was something I hadn't expected.....
My kidneys are failing and he wants to refer me to a specialist. How's that for knocking you for six then? It amazed me that's for sure. I knew before Christmas that the levels were up and down, but thought it was getting under control. Obviously not.
I had to do a 'mid stream urine test' and they then couldn't get the result they needed (apart from telling me certain things were sky high) and it would need to be sent off to another lab. Oh whoopee doo dee...!
So now I need to find out more about that.
Talking of which I'm off to the GP now, so perhaps he can tell me more about it and enlighten me.
BTW A huge BIG thank you to Phil who has put my mind at rest about a few things lately. At least you got me to smile! I've been feeling down since the news yesterday and if anyone is nice to me I might be a bit 'tear-y' at times. God I hate being ill all the time.....I dream of having full health back....but at the moment it just "ain't gonna happen" is it..... :-(
05 february 2008
dr w, local gp surgery
This was just a basic appointment, checking a few things out. However after the news yesterday it was a bit more serious. Still I feel like a new patient again, joining another part of the NHS queuing system (well that's a polite term OK!) for kidneys now.
My consultant had phoned my GP yesterday after seeing me and said he was referring me to a Kidney specialist.
Dr W said that it was all under control and the consultant would arrange the referral. All I have to do is wait.....how long I don't know but assuming it's urgent as they say I hope it won't be too long.
07 FEBRUARY 2008
DR Cassoni, lymphoma clinic, UCH, LONDON
My appointment is 11.35am and I was told to be ready 3 hours in advance. So here I am sitting here waiting. Time moves slowly....you feel nervous going to the loo in case the doorbell rings, but never mind.
At 10am I'm still waiting, cornflakes eaten, boring old daytime TV on and I'm wondering shall I make a coffee...will they arrive?
At 11am I'm still sitting here waiting....no coffee....just waiting. I phone the clinic and tell them I'm awaiting transport and they say it's OK they are on their way, continue to wait. So I do.....
At 11.45am I've obviously missed my appointment and I wait a bit longer (I live in hope huh!) but still no transport. I ring the clinic again and am told that the Doctors have now gone for the day so there is no point in coming even if they turn up :-(
It's 1pm....I've resigned myself to not going and have made a cup of coffee (at last yes I get a coffee!!). Then what is this I see coming down the road? An ambulance...it turns the corner, oh look it's a London ambulance.....oh it's parking outside another house. However they often get my house and that one mixed up.....how I don't know as it's 10 doors apart...and they've been told more than once to amend the records. Oh it might not be for me, so I go to the kitchen and then the doorbell rings. Whoops!
Outside is an ambulance driver and a lady. Not normal to have another lady there. Then it all becomes clear. "We've been stuck on the M4 for 4 hours....and can this lady please use your loo as she's been giving me ear ache for the last hour and a half?" I know how that feels being stuck in an ambulance myself so she thanks me and rushes in.
Meanwhile I chat with the driver and tell him the hospital has told me not to bother going. It's annoying for me and him, but the Doctors have gone so there really is no point. I mention this to the lady when she comes back as her clinic might have gone as well. She wasn't going to Oncology but said she would check anyway.
So off they toddled to try to get to UCH....good luck.....!
This is what it looks like -
see if you can get there easier than I can...!
21 february 2008
dr cassoni, lymphoma clinic, uch london....again...!
Hey guess what....my appointment has been rebooked AND yes I'm here! How amazing is that. It took a while to get here as we went a different route, but at least I'm here. It's also the same driver who came to collect me last time but the Doctors had gone home.
My MRI and CT scans and blood test results are back. Dr Cassoni said there is nothing to worry about - some of the levels are still high but I said that I'm being referred because of the kidney problems so she's fine with leaving it in their hands.
She said that there is still signs of healing bones and also the stress fracture too - now I know my memory is bad but I can't remember them actually telling me my leg WAS fractured! Still it's all healing which is good. I'm amazed how long bones take to heal but they I suppose mine have had a rougher deal than normal.
I was asked to have another blood test as well. I'm a real pin cushion lately but it's got to be done so off I toddle to the Blood Clinic which I'm pleased to say is on the same floor as the Lymphoma Clinic. How's that for handiness?!!!
So I did the sleeve up, find a vein thing....and eventually some blood was found and then it was time to go.
On the way back I saw what a lovely day it was, cold but nice. I like being a passenger sometimes, you can see things others don't. Like this for example...how many of you actually look at the sky and wonder about the clouds?
Sounds odd but I've always been a cloud watcher....I don't know what they are all called but the formations and colours are amazing if you look. Go on, see what is outside your window right now?!!!!
Amazing - nature is just amazing -
check it out and see :-)
25 february 2008
medical centre, phlebotomy clinic!
I know, I know...another blood test. I sometimes think they have more of my blood that I do :-)
It's one of those things that has to be done, and regularly....but I've gotten used to it now. Now that I am and needles don't bother me - I can actually look at them delve around now too - they don't want my blood any more. Not the labs of course, they always want it, I mean Blood Donors. I can't give my blood which is a real shame. However that doesn't mean you can't....go on make a difference....donate blood now!
National Blood Service
Click on Billy Blood to go to the National Blood Service website
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OK, another thing before I go. Apart from listening to me ramble on about all my hospital appointments do you want to know what else goes on in the world of Karen? The things I do apart from being a patient and waiting in clinics plugged in to my ipod.
Anyway it was just a thought so let me know.....
Take care y'all....keep smiling.... :-)