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| Previous Diary Pages: November 03 | December 03 |
| Appointments: 01-Jan-04 | 09-Jan-04 | 16-Jan-04 | 23-Jan-04 | 24-Jan-04 | 27-Jan-04 |
| 01
JANUARY 2004 Happy New Year to you all!!! |
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Well here it is a New Year again. At least this time although I am still on morphine I am not visiting A&E which makes a change from last time. Who can believe it's a New Year already, 2004 - I thought we'd all be whizzing about in spaceships by now!!! 2004 is going to be a better year this time, things are going to move in the right direction and hopefully my health will now start to improve. Let's hope all our health problems get better, each and every one of us. HAPPY NEW YEAR EVERYONE!!! |
| 08
JANUARY 2004 Home |
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At approx 5pm I had a phone call from the Hospital. You know what I'm going to say don't you - yes - transport was not going to arrive. Even though I was standing in front of the guy when he booked the transport last time - it still didn't happen. It was too late to book it for the next day as they need 48 hrs to arrange it. It's annoying when you're all ready to see the Doc and want to know what is going to happen next - it's now been put back to next Friday instead. How annoying is that?!?!?! Arrghh! |
| 09
JANUARY 2004 Palliative Pain Care, Middlesex Hospital, London |
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My appointment with Dr Farnham at the Palliative Pain Care Clinic was supposed to have been today - this has now been rescheduled to 16 January instead due to the no-transport problem (again!). I'll let you all know what happens next! |
| 16
JANUARY 2004 Palliative Pain Care, Middlesex Hospital, London |
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Don't the weeks go by quickly. I think I've had a hospital/medical appt every week since the beginning of December now! My social diary is such a whirl! Anyway on to my appointment. I saw Dr F who arrived just after I did! He said I would be seeing another Doc first then he would come in later. I then followed the Doc to the room. We sat down and Maggie looked at my leg. It is still SO sore I can't touch it. She said that after examining it she thought my celluilitis is back AGAIN. So I've been prescribed penicillin to get rid of it. A course of that should zap it hopefully. She mentioned the funny shape, as they all do. It's only happened since radiotherapy - and to think it was my best leg too (my other has a scar on the shin from when the school bully pushed me over the PE apparatus and I hit my leg badly on the wooden beams). It turned poisonous and I had to go to the Docs every day for weeks. I had chipped the bone in the leg too. A nasty experience. So as you can tell I'm not best pleased that I've not got two cronky legs both with nasty scars on them. The radiotherapy zapped leg is definitely the worst now though. They asked about the side effects and I mentioned the "funny turns" of feeling sick, dizzy and headachy. It turns out the drug schedule I was on was interpreted wrongly. I was on a high for one day and coming down for two, then back up again. It was playing havoc with my body! It's now been changed and I'm working my way through a new schedule. Dr F then came in and asked a few questions and we talked about my pains and how I was feeling. He asked if I'd heard from Dr C so I related the tale of the "discussion". We discussed it further but it will not be published here for all to see. As I said some things are private. |
| 23
JANUARY 2004 Bone Tumour Clinic, Middlesex Hospital, London |
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Guess what, no transport has arrived again!!!!! I honestly thought it would arrive this time but NO. One department blamed the other who blamed the other. I checked with Radiotherapy Unit, and Transport who both said it was confirmed. So what happened?!??! They were going
to try to get me there before clinic finished (1pm), so I would have to
wait for them to arrive so I was pleased it was still going to happen. Then guess what, yes I got a phone call saying they wouldn't be able to get me there until 3pm -too late for clinic. The Doc would be gone by then. So it would have to be rearranged for next Friday now. It was rebooked again. I was disappointed to say the least. You get yourself all ready (I'd been up since 7am ready) only for no one to arrive. After 10 minutes I had another phone call. They'd spoken to the Docs after clinic and Dr C wouldn't be in Clinic for the next few Fridays (I had visions of it being a month before I'd get another appointment) but they asked if I could go on Tuesday instead. It's better than waiting again so I said yes. There's absolutely NO point in checking transport now as they say it is confirmed, only for no one to turn up so why bother. No wonder people get fed up with it! Ironically when I was there waiting to get transport home there was a poster on the wall saying "Transport Service Survey" - strangely enough there were no forms available for your comments though! I wonder why?!?!? |
| 24
JANUARY 2004 Cancer Voices Meeting, Chertsey |
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I went to my first proper Cancer Voices meeting today. (The last meeting was a social meeting). It was a long meeting from 9am to 12 midday but was very active. I came out of there buzzing a bit but it made me feel good. We are going to achieve things with this group to help not only us but others too. It's not a support group but a User Group. I have volunteered for two Project Teams, "Communication" and also "Isolation". I was going to think about all three groups but think this will be pushing it too much for me. I was totally whacked after just one meeting so will have to take it slowly and build it up gradually. It's hard still, realising that I can't do anywhere near what I used to do without even batting an eyelid as they say! Oh yes, you're right - I had a sleep in the afternoon when we came home. I did say it totally whacked me out! |
| 27
JANUARY 2004 Bone Tumour Clinic, Middlesex Hospital, London |
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My appointment is 2.50pm and it's now 2.30pm. I've phoned the Middlesex but no one has called back. I had a horrible feeling at 1pm that I'd been forgotten again. A couple of minutes later a taxi driver turned up to collect me. He said we wouldn't get there on time, but we'd get there. The hospital NEVER called back either. What a surprise - NOT!!! I was sitting reading my book for a while - the clinic wasn't as bad as a Friday clinic though which is good. I was then called in by Dr A Nikapota (I think I've spelled it right!). He was a registrar of Dr C's and would be examining me and then I would be seeing Dr C as there was a few patients she wanted to see. He examined my leg and the right leg too, which surprised me as no one has bothered until now. He said that the cellulitis hadn't gone completely and would be giving me another course of the penicillin to clear it. He showed me my blood test results and also the kidney tests they'd done which I wasn't aware of. All were within the normal ranges, some up some down but all OK. He then asked ME if I had any questions. Now isn't that brilliant! That is how it is SUPPOSED to be! It was such a change and made my day!! I just want to be treated with respect as both another human being and a patient. It's not a lot to ask for, after all it is MY body here we're talking about. He gave me a copy of the biopsy report - after I read it later it raised a couple of questions for next time, so I've already written them down ready! I have to otherwise I'd totally forget them! He asked me when the last MRI was done of my right leg and I said none had ever been done, apart from when they found the tumour by accident in another scan. No one had mentioned it since, nor scanned it or x-rayed it either. He said it would need to be done - I agreed there - I want to know what is going on in there too! He went to see Dr C and then came back and asked if I had thought of any more questions. It was so refreshing for this to happen and I was so pleased after my last appointment. Then there was a knock at the door and Dr C came in, smiled at me and said hello. Asked me how I was. I was pleasantly surprised at the response this time. She looked at my leg and said we'd need an MRI of both legs and also x-rays of both legs. She wants to have the scans back there at the hospital for Margaret (I think she said Margaret!) to check as my scans were so difficult to interpret. I am seeing Mr Briggs next week and he wants an MRI done of my leg, so she said he could do both of them from there, and also the x-ray as well. So I've added that to my list of things to remember too. I'm hoping to check the comparison of the scans with him there, from the first scan to the last one done to see changes. Whilst with Dr N I asked how big the tumour was pre-chemo and he said it was quite big, but they are normally quite big before they get detected. I must admit to being surprised at how big it was. It just shows how little we are told about it all really. It's no wonder we want to know more! |
