Cancervive diary
The Big C02 june 2008
Dr W, local surgery
I went to the Surgery with John. He is totally unlike me, leaving things to the last minute. I hate being late for anything and much prefer to be early, but when you have to rely on others, you have to 'go with the flow' and grit your teeth. Grit grit grit..!
I was told on arrival that clinic was running late. They weren't kidding. I finally got in about 3/4 hr late! Now if you are one minute late you have to wait to the end of clinic (if you are lucky and not cancelled totally) but if it's the other way round and it's the GP/Consultant/Nurse keeping you waiting, it appears they can do that as long as they like and you have to put up with it.
Finally I escaped all the mothers with screaming kids (one kid tried to take a book off another woman, then laid on the floor and cried under a chair when his mother said it's not nice - not nice - I ask you!).
No wonder the world is going the wrong way. It's one of those times when nothing can go right and you know it's not going to.
Anyway I went in to the Doc and said about the morphine being doubled and he hasn't had a letter yet. This was a week after I'd been and the Consultant had promised to fax it the next day remember.
Sometimes I wish I could go to sleep and wake up with all this over. Life is difficult enough sometimes without people making it a LOT worse. Sometimes it feels like the slightest thing will push you over the edge without too much trying!
I've had a lot of extra pain in my 'good leg' lately and it's hard to sleep and walk or even sit. It's therapeutic writing it all down, but I hope you guys out there don't all think "OMG all she's doing is moaning" - sometimes it just gets too much and this is my pressure valve!
Am dosing up on pain patches, TENS machine and as much morphine as I can get my hands on at the moment.
Now who had that song out with the title "Much too young to feel this damn old"....never has a song title sounded so true!
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So what is there to look forward to now then? Well there's always more hospitals I suppose....!!
At least that made you smile! :-)
06 july 2008
at home, leg measuring
Ahh now I bet you're wondering what this is. Am I to have personal made to measure trousers? Or perhaps some new fishnet stockings? Well kinda right, stockings yes, fishnets no!
Sadly compression stockings are not made in fishnet material. Bit of a shame really as it might make them more '20th century' than 18th century! Honestly, not all people who wear these are in their 70's you know. Some of us are MUCH younger than that and want to look half way reasonable when we go out.
OK it's another whinge but a perfectly valid one I think when it comes to compression stockings if anyone has to wear them they'll know what I mean!
Anyway, it was time for them to be measured. Apparently there is a new type of Compression Stocking out that may just be the ideal thing for me. As I have such problems with these painful lumps and bumps and my legs seem to change shape/size on an almost daily basis.
I've also got some new ones to try from UCH. They came direct from Germany in about 4 days which is amazing! However when I saw them I wasn't so pleased. Apart from them looking like they should be on an old granny, there was a very strange 'lump' on one of them. Now OK I have strange legs (don't laugh!) but this lump is on the good leg which concerns me - do my legs really look like that? Oh don't answer that those of you that know me, I might cry!
Now do you see what I mean about them being more 'elegant'???? Strange about the 'extra lump' too. However they've now been washed the regulation 4/5 times before wearing and I'm giving them a go. They are a lot different from my old pairs of 'legs' but hey, I've got to try them haven't I....?!?!?
I'll let you know how they go. If only they could be more 'normal' it wouldn't feel so bad having to wear them. Mind you, if the Consultant had listened to me in the first place when I mentioned it month after month after month, then perhaps it wouldn't be this bad..... :-(
16 june 2008
Dr e, local surgery
Unfortunately my Doctor doesn't have any available appointments. This isn't unusual because he's the most popular Doctor at the surgery! It's a pain when you want to see him though, in more ways than one.
There is one Doctor there I refuse to see so I said I'd see anyone apart from her. Even if I was dying my family know not to let her near me. Shows how little I think of her skills doesn't it. I'm not the only one though and have not found anyone who actually likes her yet!
Anyway I was here to see Dr E - a new Doctor to me. I'd met him before when he came to see a neighbour of ours that I was visiting at the time. He seemed nice and I always take people as I find them, no pre-judging. Someone I know said he wouldn't see him though as he wasn't good, but I thought I'd give it a go and make my own mind up, as I always do.
So what did I find? Well very similar to Dr W - open, kind, helpful, honest, speaks in your own language - in fact a lovely man. So now I know I can always see him if Dr W isn't available.
I also spoke about a few other things that I'm not going to go into here but suffice to say that he was very helpful and I wouldn't hesitate to see him again. That's if you can make an appointment with him, as it appears he is as popular as Dr W!
25th june 2008
crest outing to paradise park
I've been looking forward to this for a while and it's finally here!! No family coming with me this time, me on my own. I could just sit there with my ipod on and drift off somewhere else until we arrived.
Luckily the Driver was really good and made sure I was OK getting on and off. As I couldn't do all the walking I took a short cut through to the Restaurant and had a coffee and a small wander around the Garden Centre on my own. Actually my Aunt (not my real Aunt but she should be as she feels like one!) came with her friend. They made sure I was OK and I said to them to go off and 'do their thing' I would be fine.
I caught up with a friend of mine from CREST and we had another drink and chat in the Restaurant and then headed back to the Coach.
I really enjoyed the day actually and it was nice to be on my own. Usually I'm with someone and it's nice to do something on your own for a change.
I've been having some family hassles, stupid petty hassles really. However that's families for you isn't it. Sadly there is no escape and I'll explain more about that later.
27th june 2008
ultrasound scan, ashford hospital
As you know I don't take transport for granted and although it was booked, I wasn't going to take it as red until they actually arrived. It was an early appointment, 9.20am so hopefully it won't be too long a wait.
He arrived in time, it's a local hospital so not too far to go. "Well off to Ashford Hospital we go" he said. "Yes I replied, not the best of places in the rush hour, but hey, I've got no choice". Then his face changed.
"I was joking with you" he said "You're down to go to St Peters not Ashford!" Oh hells bells here we go I thought. I got out my letter to check that it did indeed say Ashford, which it did and so he had to ring his Controller.
I only heard one side of the conversation, but then he had to speak to the Consultants Secretary. It was a communication error (read cock up!) and I was due to go to Ashford but had been booked to go to St Peters.
Here in lies the next problem. He was due to take four other patients to St Peters from a local town and wouldn't be able to get back to collect me. So there I was, in the ambulance waiting to go, and couldn't get back.
For once, this was not a problem. Normally it would be as I'd be stuck at the hospital with no way of getting back. However a good friend of mine, Carol, had made arrangements with me to go out after I got back from the hospital. So I said "Don't worry, my friend can hopefully pick me up". Says I hoping like mad that she could instead of meeting me at home and going out from there.
I should've guessed this was a bad omen to start with shouldn't I really.
Anyway I got to the Hospital, I was also to have a Blood Test after the scan. Now that I wasn't due back on hospital transport this wouldn't be such a problem I hoped.
I was taken to the Scanning Department (Ultrasound). As the transport had arrived just as I was to start drinking my 2 pints of water I couldn't drink it. I explained to the guy in the Ultrasound Department and he said to sit down and someone would see me. Me being me, I knew this was not a good sign! I'd been here many times before in the same position. However I would give it a go.
I sat down and put my ipod on. Got out my book (thanks Phil, good read by the way!). I was there a while and no one came so I walked up to the other desk and said "I think I'm supposed to be drinking lots of water for an ultrasound - can you please check for me that is right?" and off she went.
Meanwhile my name was called in to the scan....help!!!!! Anyway I explained to the lady that I hadn't drunk the water yet and another Nurse was going to check for me and she said OK and to sit and wait.
I was just about to sit down and my name was called again. I went in to the Ultrasound Guy (sorry I don't know his proper title!). I explained again about not drinking the water and he said "Oh don't worry, I prefer patients like you to have no water as it obscures the scan anyway but they won't listen!". So that's good on my side, but what about when you're referred and you DO drink the water. It doesn't make it better for you in the long run. Why don't they listen to each other? If only huh!
I laid on the couch and he said "I will be speaking to my colleague so don't worry". I had to lie on my back, my side, my other side, back to my front, back to my side. At this stage I said "I don't know how you can make anything out of that blurred screen" and he replied "Don't worry, neither can I but I sound like I do so they believe me!".
After that we had quite a giggle about bluffing your way thought the NHS. He asked at one stage "Do you have a gallbladder?" and I said "No, it was removed after the chemo - and nine weeks in hospital and lots of agony!".
"Oh good" he replied "that's why I can't find one!". What a relief huh.
After that it was time to wipe off the jelly and pull my skirt up again and go. Would you believe it though, I was out before it was my appointment time for the Ultrasound scan! Don't worry I think it's a one off in the NHS and won't happen again! ;-)
Off now to the Blood Testing Department. Normally this is not good. It can be as quick as 15 minutes, but as long as three hours. I was NOT looking forward to turning into the Blood Department at all just in case. Luckily though, it was a nice surprise - there was no queue outside and only a couple of people sitting outside the Blood Department! Wahoo!!!!
I couldn't beleive it. Sitting down, I spoke to the people next to me and they couldn't believe it either - so you see this is not a regular occurence!
Just after I put my ipod on and got out my book my number was called and I went in to the first cubicle. It was a good start when we laughed about 'Aliens and transplanting bodies' which made it better. She asked which arm and I said take your pick. I didn't mention neither are that good - I didn't want to scare the poor woman did I now!
She tried one arm and no luck then tried the other. At this stage I mentioned to little 'trick' they mentioned at UCH one time and she said she'd give it a go. Well it worked, hey, I wasn't surprised. It's worked like that a few times. Some people don't like to 'go in' without feeling a vein first though so I tend not to mention it unless I feel it is 'safe' to do so! Amazingly enough it was all done and I could now ring my friend to find out if she could collect me. Fingers crossed!
After a few text messages she could collect me which was fantastic news. We went to her house first to have a coffee and catch up. She's been on hols in the USA and we've not seen each other for a while. Then we decided to go and see a movie. A treat for both of us!
So now you're wondering what we saw. I like all sorts of films, luckily she has similar tastes to me so we didn't mind what we saw. In the end we decided on Narnia, Prince Caspian. I've seen the first one and enjoyed it, yes I know it's a kids film, but hey, I'm a kid at heart aren't I....!?!?!
Could we recommend it? YES! It was a brilliant escapism film and well worth seeing. Even if you've not seen the first one it's still a story in it's own right. Go and enjoy it....we did!
Maybe I should start a 'Film Review' section of ones I see. Last time I think I saw 'The Other Boleyn Girl' which amazed us. I don't remember history being that interesting at school that's for sure!