Cancervive diary
The Big C07 february 2007
peer review panel, st peters hospital
This is something I've been interested in for a while so it was lovely to be invited to go to the Meeting as a Patient Representative. Mind you when I heard it was in the Pathology Department I wasn't so sure....!!
I was amazed to see so many laboratories all in one place. I didn't realise there were so many in the hospital, there is SO much we don't know about the hospitals we visit. We see only the one side the same as the Docs only see their side and not ours sometimes.
It was just like being at school and waiting to go to the Headmasters Office - not that I know how that feels you understand...!!! :-)
As a patient I was asked my opinion on Information available and also how I became involved with User Groups.
It was a brave move for me in the beginning walking into a room full of
people I didn't know. I'm a shy person really, I have a 'bubbly outgoing'
side and the real side which is shy and has low self esteem.
8 february 2007
nhl clinic, dr cassoni, uclh, london
Yesterday Alistair called me to say that due to the snow due, he may not get to me - I really hoped that he was wrong and would make it. I'd had too many appointments not happening lately due to non-arrival of transport.
Home before 7am in the morning....
Anyway at 7am he phoned to say he would be here in 30 mins. Panic stations, here was I sitting down - no breakfast - not showered or dressed - what fun!
I made it just in time, Alistair arrived spot on as he said he would. He used to be a weather forecaster so we had an interesting ride in to London, discussing the weather and how forecasts are done.
On the M25 into London
The snow wasn't too bad - not as bad as predicted anyway. We only saw one car facing the wrong way, it'd had an argument with an arctic so came off worst as you can imagine!
Now on the M4 - only one lane was blocked so not too bad
For those who've not seen UCLH now it's all in one place - almost!
UCLH in the background with the new section being built...
When we arrived at UCLH (in a separate building which is where Oncology is) there was just me and the Receptionist and a coffee machine. No Consultants, No Doctors, No Nurses. It was very empty for almost an hour. Then patients arrived and a few consultants.
Clinic would now start. A guy came in and sat down near me. He said his name was Shaun and yes, he was Irish! We had quite a laugh whilst waiting. Although he said he only had 4 months to live he didn't seem down about it. He was similar in thinking to me and we had quite a chat about hospices, dying, treatment, consultants, the world in general.
I don't think some of the other patients appreciated our warped sense of humour though which is their problem! We had a real laugh about life and death.
His name was then called and he went off with a cheery "Bye and I hope you make it". I think a few people were relieved we'd stopped laughing and chatting. We're all going to die sometime, others sooner than later. It's part of life and there's not a we can do about it as control is not in our hands.
Soon it was my turn so I put my MP3 player and book away and walked to the Consulting Room with the Registrar. I would be seeing her today which was fine with me! She asked about the MRI scan and said that without seeing the results there's not a lot she can tell me.
She gave me a prescription for two lots of pain killers though which improved my day no end I can tell you. Also she gave me a blood test form which I'd have to go back to the Blood Clinic to get done.
I also made my next appointment at the same time and by the time we'd sorted that out my number was called...!! How about that for timing! :-)
The lady had a problem finding a vein so I told her the normal thing "you can't feel it but if you go in at 45 degrees in the right elbow you'll get blood". I know some don't like doing it if they can't feel it but it is worth a try with my veins. Guess what, it worked, it was slow coming out, but it was coming out!
I then had to go to the Main Hospital (UCLH) to get my drugs. It took me a while, it was only when I saw Alistar that he said I should've asked for a Porter. I didn't just took a very very slow walk - independent as much as I can be. I hate relying on others.
I queued up, got queue jumped by a guy saying "I'm in a lot of pain" - was just gonna say "Aren't we all mate" when I thought better of it when he started kicking the Pharmacy Wall. It's not worth it is it.
Then when I handed my form over she asked which Department I'd been in and I said Oncology. apparently the Registrar hadn't signed the form. Normally they ask you to go back and get it signed but she saw my crutches and said she'd see what she could do.
I had a long wait after and finally she came out and said she wouldn't stop me taking the tablets away as I need them but would get the Doc to sign it later.
A LONG TIME later I finally got my drugs and she said the Doc would have to come over in the snow and sign it. At least I could now find Alistar and we could now go.
19th february 2007
ct scan, sph
After much chasing of GP's, Doctors and Secretaries it was decided that I should have this scan - I've now had a total of 35 different types of scan. Most people only have a few in their lifetime. My only concern is the amount of radiation that is going into my body through them. Anyone know how much each one adds to your total???
Anyway I got there early - we used the old Peterbus - cronky old thing but it drops you right at the door so we shouldn't complain. It's used more like a normal bus now - means they turn up when they like, early or late, or cut them out and then have the cheek to charge you for it!! As I said though, it does get you to the Hospital which is something.
We eventually found the right department and sat down and within a few minutes a Nurse came out and asked "What's your name? Have you had a scan before" after saying "Oh yes loads" this was then followed with "Blackcurrant, Orange, Lemon?". I chose Lemon, "good choice" she said "the blackcurrant is horrible!".
It wasn't like the gloop I've had in UCLH, more liquid than gloop which pleased me. I'd not had anything to eat since the previous night and it was now 1pm - so to have sour lemon was probably not one of the best decisions to make!! A whole litre in 1 hour, with the last cup just before you go in to the Scanner Room.
One hour later and I was being led into the Scanner Room. It's a machine with a hole in it again, but it's not claustrophobic at all, well not to me, a veteran of 35 tests now...!!
The bit that worried me was when they said they'd need to inject me. As you know my veins aren't good anymore (my last blood test took 1/2 hour to get the needle in to get the blood!!). So the Doc gave it a go, he'd just come back from a holiday in India to see his family, he was calm and relaxed, but sad to say it didn't last long as he tried to find the vein.
After trying and then giving up he called another Doctor. He looked at my arms, my wrists and my knuckles. I said I'd had it in the wrist before and the knuckles and he could try I didn't mind. "I will probably flinch if you do the wrist area but don't worry, keep going if it will work!". He tried in the arm first, it failed, then the wrist, it failed, then the hand, it failed.....he said "lean on her leg" and I said it'd hurt as my legs are sore. Oh doh, I fell in then, he was going to try in my foot!!! It's been a while since they've tried my foot but if it works I don't mind. He asked if I'd object if he tried that.
It was good to be asked, as you know not all of them do and just treat you like a piece of meat stabbing you and prodding you. He did say I'd probably have some bruises and he wasn't wrong.
It was sore as it is not very fleshy in that area - he got the needle in and I breathed a sigh of relief....until he said "aaahh" and swiftly followed it by "it's blown". So that was that.
He told me I'd have to have the scan without the dye, just hoping that the gloop would do it's stuff and show up what needs to be seen.
All I had to do was put my stockings back on - I had to ask the Doc to help me get them off as it's not easy with the compression ones. They do their stuff though, so I have to put up with it.
21 february 2007
appointment, social care team
This lady came for John more than me, but we also discussed problems we both have with things around the house. He has had to wait six months for this appointment but it's here at last. He's finding things more difficult to do as his Rheumatoid Arthritis gets worse. Neither of us will give in to it though and do what we can. If we can't do something we don't do it...!!! LOL!!!
22 february 2007
mr b, london
I was picked up early for this appointment, I wasn't convinced we would be seen earlier as Mr B doesn't arrive until mid afternoon. I know as he has private patients in the morning as I used to be one when I was working and had medical cover.
So I checked in at Reception and went to Clinic 6 and sat outside waiting. I had my MP3 player with me and a good book (sadly not Dan Brown this time!) but no sooner had I opened the book than my name was called...!! Mr B wasn't there which was a shame but I saw his Registrar - he's a lovely guy - I've seen him before and he asks if you have any questions which I like.
He sat down after shaking my hand and got out a file and put my scans on the lightbox. A nurse came in and I got a bit concerned then. He said "Now what we have is...." and showed me the report. "There is a couple of hotspots there but they've not changed much since the last scan so things are looking good".
I asked about the pains, they are SO bad and the legs are tender, so tender I can't bear the cats brushing against them. I asked him outright "Will these pains be there for ever now?" and he replied "Ahem, yes, as they've not gone away and are still as painful as ever they will." At least I knew now.
It's something I have to put up with, I know the Registrar at UCLH gave me more painkillers to try but I'd like to find out if there is anything more natural that I could use instead. If you have any ideas, email me with them. I'd be interested to hear.
At least I'm safe again for a while. It's like having a "Get out of jail" card. You live to fight another day. Of course the pains are still there, but then again so am I still here.
Sadly my friend didn't, she died after a hard battle - in the end it was just too much for her. It does make you wonder why some make it and some don't. It's not a question anyway can answer I think, although we will probably always ask it. You get to know people really well in a short space of time, you know what they're going through, and sadly not all of us make it.
Enjoy life everyone, you never know how long you've got :-)