Cancervive diary
The Big C01 february 06
physiotherapy appointment, london
The appointment for physio where I wasn't even examined by the registrar has arrived. We got there early and it was quiet so I was hoping to get in early and go. It wasn't to be. They were at lunch until 2pm so we couldn't do anything about that.
The driver was then called and told he had to go to Stevenage to take a patient and then come back for me....I knew it would be a late one again after hearing this. Still I didn't mind, I'd taken a book and a sandwich and had a seat to sit down on to wait.
In the end I was late for the appointment as they were running late. So I eventually got home late too, so much for leaving early....
Anyway I had some extensive questions and exmaination and sadly there was not time to complete them all. However she thinks it may be a neck and muscle problem but will be able to tell me more after the next appointment. Good job it was warm in there as I had to strip down so she could see what my bones/muscles were doing.
02 february 06
dr cassoni, uch, london
The hospital has now moved and the clinics too.....they were a total nightmare. People everywhere and not enough seats to go round. I sat in the new waiting room and waited to be called. A lady was sitting there and complained that she had been waiting 15 minutes. Phew...I've waited over three hours to see a Doctor before! Try that then.
I was then called by Dr Cassoni. She asked if there was a problem when I went in or if it was another booking mistake - it was a booking mistake. I think she'd had quite a few that day! The appointment went well which pleased me, she said the lymphoma is under control and that the bloods came back OK as well. I had the usual examination and got the standard comment which I was expecting. At least she is going to try to find out a few things which will help.
She also said she didn't like 'labels' on people when she examined my legs and is still puzzled as to how my leg was that badly damaged by the radiotherapy and has never seen anything like it before.
I was then sent for a blood test. At least now it is in the same building, it was SO busy though that I had to stand outside the waiting room as there was no chairs. You add your name to a book and they are taken in order which is a fairer way of doing it.
My name was called and in I went. She had a real problem finding a vein and I now have a huge bruise on my arm where she tried. I'm not sure if it was from the wiggling of the needle or tapping the arm to raise the vein which never works with me. I said the wrist is sometimes a good place with me but they are not allowed to do it there now because of nerves. I told her about the phlebotomist who told me to say 'go straight in the middle at 45 degree angle and you can't feel it but it is there' and she said she'd try elsewhere but if it didn't work would try it. It didn't work - no surprise there then! So she tried it, mind you she was quite hard putting it in which was a shock. Then guess what, it worked....blood appeared as if by magic. She said to say it to everyone when I go for blood.
03 february 06
jan, lymphoedema nurse, uch, london
I was hoping yesterday that the other lady we'd collected would be late so I could have a quick look in PC World at what was one offer but it didn't happen.
There was a student nurse in there which I didn't mind. It helps them to learn and they can only do that with real live patients. I had a chat with Jan about things first and then she examined my legs. They are worse as Mum and I had suspected. They have changed shape and the 'dip' where the radiotherapy damaged it is deeper and it is now skin on bone so it is very painful to the touch. I am used to putting the stockings on so breath in when it reaches that spot but it's more difficult when someone else does it.
Jan has told me that I really need the bandaging again - remember that - I look like a mummy for three weeks with wonderful NHS velcro shoes...!! She is not sure where it will be done yet but it needs to be done.
She is also going to try to get a 'insert' where the 'dip' is as well to make it a better shape and hopefully the stockings will work better then. Fingers crossed. I know it will never be 'normal' again so have accepted that.
I also have a mark on my right leg which I'm not sure what it is. I may have some temporary interim stockings to help whilst I wait for bandaging. There's no point in chasing the order for the stockings when I will need different ones anyway.
Jan says I need to rest more and not do so much so I'm going to try and rest ye olde legs more as they are quite painful. Only thing is when I rest it gives me cramp which is even worse when it's at the front of the legs along the shin bones and all I can do then is cling to the wall and cry. I'll try though as it could help. I'll try anything if it helps....!
***BERTIE UPDATE***
Bertie is doing fine, he has had a couple of little 'accidents' which is
expected after such a large operation but he is doing fine now and is back
to his normal self almost. He doesn't eat as much as he used to but then
he doesn't have a colon now either. He still has oily fish but no dry biccies
with his meals. He has them as a special treat and not every day. It's hard
as he is used to them but he's adjusting the same as me. It's in his best
interests in the long run. I'm SO pleased he's OK as at one stage I thought
we'd made the wrong decision. He looks so cute with his bare belly and scar.
He had his stitches out and was quite good when the vet did that. He's worth
every penny.
Well that is me caught up with the diary for now. If you see any cheap pc's let me know and I'll hopefully have a new toy to play with! The PC went out of the window when Bertie needed his operation.
I'd also like to say a HUGE BIG THANK YOU to NICK LONG for helping me out so much with the computer and for helping out with all the parts. You are an angel Nick!! A good friend and a PC expert, what more could a girl ask for!
It's now 12.30am and I'm wide awake so not much hope of sleep. Luckily John went to Scotland today (not being nasty - it just means I can type to my hearts content without waking him!).
A bit of surfing and email replying and then it's zzzzzzz...zzzzzzz for me. Night everyone.
05 february 06
john is going to scotland
Bonnie Scotland is calling so John has answered and is going up there to see his mate who he hasn't seen for ages. It's amazing how cheap the flights are now. The return was only 1p or something silly like that. Domi is missing him already bless her.....
09 february 06
physiotherapy, london
Physio again. More questions and then some light exercises which I've already started and they appear to be helping. She thinks that it's a neuro thing going on in the neck. All to do with the way I walk with the walking stick. I didn't realise how I used to do things until it was pointed out to me. Same with anything I suppose. So I'm definitely more aware of sitting and walking now. Specially when in the waiting room at the hospital!!!
10 february 06
podiatry, egham
A boring thing but it has to be done due to the Lymphoedema mainly. It means a journey out but we combine it with any others at the Docs at the same time if needed. John is back from Scotland today. We've missed him and Domi has driven us almost crazy without him. She is like his little shadow and she was very confused when he first wasn't there.
16 february 06
ashford hospital, middlesex
A strange one here. We got there early and had a bite to eat in the League of Friends cafe. Nearer our appointment time we went round the corner and ....wham.....there were loads of people all sitting there looking bored. So we joined them. Sitting there that is, not looking bored.
I found a recent magazine (2003!) and started to read it and was called in almost straight away. I saw the Big Cheese (Consultant) himself. He examined my mouth and asked who my Dentist was. Then he said he would give me a prescription for some more mouth items and then discharged me....I asked about the other lady who said I'd have to go for five years as she mentioned it could turn to mouth cancer. As this is a major thing to me I wanted to know why but he couldn't tell me and just said it's not needed. I'm quite concerned about this but haven't been able to ask anyone about it yet.
20 february 06
physiotherapy, london
More strapping and not getting it wet for as long as possible. It does help with the shoulder and neck though so it's worth it. Mind you, it's pulling my skin off so have to be careful.