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| Appointments:
| 02-Oct-02 | 04-Oct-02 | 09-Oct-02
| 10-Oct-02 | 11-Oct-02 | 16-Oct-02
| 22-Oct-02 | 23-Oct-02 | 25-Oct-02 | 29-Oct-02 | 30-Oct-02 |
| 02
OCTOBER 2002 Home |
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Jane and Judy arrived, it was a surprise as Jane said it would be Sue coming! The line was a bit "gunky" (medical expression of mine!) but cleaned up OK. Flushed through fine, but it just wouldn't "bleed back". This worried me a bit as I need the bloods tested before I'm allowed chemo on Friday. However, just as Jane was trying it, Liz phoned (the PICC queen). She spoke to Jane and said it sometimes happens. They are now going to "unblock" it hopefully on Friday at the chemo suite - keep your fingers crossed for me! Then I go back to the bone tumour clinic, then back across to the chemo suite for my chemo. I'll be worn out by then with all the to-ing and fro-ing!! I am wary of chemo now after the last episode, but I'll speak to Dr Cassoni about it on Friday. Another side effect for me....how nice! ;-) |
| 04
OCTOBER 2002 JAH, Foley Street, London |
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Left at 7.30am, Alistair picked us up earlier than normal as another patient had their appointment time changed and also need to go to another hospital, the scenic route this time! We didn't get back home until 9pm so it was a LONG LONG day! Went to the Bone Tumour Clinic, (apparently there is a Lymphoma Clinic but it's always held on a Thursday every two weeks and I always go on a Friday and once on a Wednesday so miss it....typical!!). Saw the new registrar, Beatrice, had lots of questions for her which she answered. First off my radiotherapy is being moved back as it's too soon after chemo and my body needs to recover properly. I have to have a flu jab as well, but not until after chemo has finished. I am at a higher risk because of the treatment, so if you have a cold/flu - sorry no visits yet!!! It's not worth the risk. I then went across from UCH to Foley Street, a bit chilly as it takes me a while to walk with the frame but I got there..... they said they'd try to get bloods from the other arm, three attempts later, it finally worked, phew! It's in an awkward place and if I move my arm too much the chemo doesn't flow in properly. As the PICC is blocked it was decided to put chemo in the other arm - at least it could go in that way. Sally put the gloop down the PICC line to try and clear it. Strange it could be flushed through but no blood out. It sometimes happens apparently. It would to me wouldn't it. Anyway they also considered taking it out, as it's blocked it's not much use. Then......suddenly....blood came flowing out (into a syringe of course for the squeamish amongst you - me included when it's my body and my blood!!). So at least that is working fine now and will save more needles next time. Oh and I have some more drugs to take, to control the chronic indigestion I get as side effects. Even with nothing to eat it's still there....at least these should help. I'll be rattling soon with all these! Once the chemo was in, it was time to wait for transport, so at 4pm we started to wait...and wait...and wait.... the poor nurses kept phoning and we were told between 5 and 5.15 someone would be there.....at 7.30pm someone finally arrived after we had walked around to the Main Hall at UCH. Got home at 9pm....a long old day. Talk about tired.......I felt like I could've slept standing up!
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| 09
OCTOBER 2002 Home |
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Jane arrived on her own today. She decided to clean/flush the PICC as it was looking decidedly "gunky". Underneath it is all OK, it just looks nasty behind the "second skin" I have over the top of it. She said if I have an attack this time and Mum or any of us needs any help to just phone and she'll be there. It's nice to hear that. I don't remember much about it when it happens to me, just immense pain and agony for hours. It must be frightening for others to see though as there is absolutely NOTHING they can do for me, unless they have a syringe of morphine handy of course!! |
| 10
OCTOBER 2002 Home |
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I spoke to Dr Cassoni today. She wants me to have another scan to check on the progress of the cancer. It's an MRI scan. I remember last time I had to have injections, I hope I don't this time!! I really am fed up with needles now. The PICC line was supposed to stop all this, but sadly in my case, it's not stopped it totally and I still have to have needles. Arghhh!!! My radiotherapy planning is still scheduled for next week, I have to go to the Mould Room and be planned! Dr Cassoni said I wouldn't lose my place in the queue then, but the treatment would be delayed to allow my body to recover from the chemotherapy. I was hoping for a nice quiet week with no hospital....oh well...think again........ |
| 11
OCTOBER 2002 Home |
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Well I had a good'ish nights sleep. Then awoke even more tired than when I went to bed last night. I feel so shattered, it's unbelievable. I could sleep for England at the moment. I just ache as well. It's the normal "head/shoulders/arms" ache I've had since the beginning so am getting used to it. How can something you can't see cause so much pain?? It just doesn't make sense. I've had some nice emails from the website again, they really cheer me up when I'm having a "not so good" day. It's nice that people I don't even know are supporting me through this fight of mine. Sometimes in the early days of this, I really believed that some people didn't believe it was as bad as I said. I got the impression they thought I was putting it on. How wrong can they be - I wonder what they think now?? Sometimes it doesn't even feel real to me.............. |
| 16
OCTOBER 2002 UCLH, Mortimer Street, London |
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No Jane and Judy today, this time it was Suzanne. It was just a clean and flush of the PICC today. Although it looks "gunky" it cleans up fine. Flush went through OK as well. I hope it works fine next week before the chemo again. No signs (touch wood, fingers crossed and all that!) of the back pain. I've been nervous all over the weekend in the evenings in case it returned. I know the signs and every twinge made me anxious just in case. Keep up all your positive thoughts everyone, it seems to be working! In the afternoon it was off to Mortimer Street for an MRI scan and radiotherapy planning session one. I arrived fairly early and went to the MRI Department. Was booked in and sat in the waiting room. Went prepared - book, cereal bar to much if hungry (had no lunch) and puzzle book. A lady in the waiting room asked if I'd had one before and what happens. I was told they were running an hour late, so Mum went to the Radiotherapy Department and told them in case I was late for that appointment. Just after she got back, they phoned down to say come up and have your session here it'll save time. So off I toddled..... I had to have a boot made (not my colour really, plaster of paris!). I asked why a boot when it's in my tibia - apparently it's to stop me moving my leg at all - my foot is put in the boot and then I can't move. Very messy - but lovely and warm when it was being done. After that off I toddled again back to the MRI department. This morning I had a letter arrive saying an appointment had been made for me on 16th November for an MRI scan. This was news to me so I checked it out. That was a date set for an NHS appointment -weeks away! This was being done privately and I had an appointment within two weeks! Shows the difference doesn't it. Anyway back to the MRI. I had to sign and fill in another form with lots of questions, and again answer them to the MRI man prior to going in to the room. I sat on the bed by the big polo mint machine (the hole in the middle!) and had my leg strapped ready for the scan. It was going to take about 20-25 minutes. Lots of noise and sounds of birds chirping (this was the machine not free flying birds in there!!). I asked if I was going to be injected (I was last time and this was worrying me!) and if I could have it put down the PICC line. He said what was it for and I replied "Chemo and taking bloods so far". He said that the chemo nurses aren't keen for other things to go down the line but he would check and I would probably need an injection. He would check the scans first and see. I laid there in this tube then and after each scan, on hearing the door go, wondered if it was him with the injection. Worrying for nothing though, as I didn't need it! Something good happens at last - no injection! Hooray!!!! I was then free to go so we went to the Transport Admissions Desk, another long walk down hospital corridors again. I'm getting worn out, there was no wheelchairs available, only one we saw with one wheel!!! The lady on the desk said they would be coming and to go to the Main Hall to wait. Another long walk......... We had been waiting an hour now and checked with the Main Hall Desk only to find out the other lady hadn't even booked it!!! She'd done it to three other people that day!!! Why employ someone to do a job like that if they don't do it. She is well known for things like that according the the people we spoke to! Nice huh!! I don't mind waiting if I know transport is coming but that......aarghhh!! In the end we had to wait until 7pm again......got home at 8pm, a quick journey with a taxi driver who had a bit of road rage along the way. I thought he was going to get out and deck a few people....!! Well sorry for the long entry this time, there was a lot to say! Next session for radiotherapy planning is on Tuesday, going to have a tattoo and a CT scan this time. |
| 22
OCTOBER 2002 Radiotherapy Clinic, Nassau Street, London |
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It had to happen to me wouldn't it. I was really tired but was up and ready to go at 7.30am for transport. My appointment was for 9.30am. At 9.45am I was still waiting...... After many phone calls, getting cut off, put on hold, diverted to other departments I finally got to speak to a real person. She said she would find out what was going on and call me back. Waited some more, still no one turned up. Finally a phone call, it appears my form was lost, or a mis-communication happened...... no transport was booked. Even though I'd had a letter saying it was booked over three weeks ago!!! They need a good person to put things in order there that's for sure!!! So there was no spare appointments available and I'm now rebooked in for 29th instead. I was all psyched up ready for the scan (which involved needles last time!) and my tattoo (more needles!!). I really am fed up with all the hassles involved with trying to get there even before any treatment starts. If it works smoothly then it's good, otherwise it's hassle all the way. The waiting around is so boring and tiring for me. Oh well not a lot I can do about it, grin and bear it.
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| 23
OCTOBER 2002 Home |
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No Jane again, Suzanne came this time. My arm looked quite "gunky" (medical term as I mentioned before!) but it cleaned up OK. I'm not sure if they're going to take it out after this chemo or leave it in until radiotherapy is finished (as they may need bloods taken). I had blood taken today, it wasn't working to start with so Suzanne flushed it through and then tried again - success....it worked this time. I'm gettng better with the blood taking, but it still makes me cringe!! I couldn't be a nurse that's for sure!!! They have to put up with a lot, a real dedicated bunch of good people that's for sure! |
| 25
OCTOBER 2002 JAH, Foley Street, London |
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Day Care Room 1 beckons again. This time I was walking without the frame as well as it wouldn't fit in the hospital transport car. Can you imagine sending a car that wouldn't take frames and wheelchairs. He'd had someone in a wheelchair the previous day and it wouldn't fit. They need someone to organise it from the other side of the triangle. Someone who understands what is needed. Sort of like me I suppose. If I could do it from home I'd have a go! As long as I'm awake, that could be a small problem.....!! Anyway, phew....at long last, chemo is over!!! It seems so long ago when it all started but at least now it's all done. Just the radiotherapy to go through now!!! One whole month of travelling every day to London for a zap here and there. I don't mean to make it sound trivial but it seems a long way to go for a little treatment! Apparently I was quite wobbly without the frame and must admit to being scared without it. I've had it for a long time now and I suppose it's become part of me. I gave the Chemo Suite Team a big box of choccies and a card, a small price to pay for all the hard work they've had putting in lines and things in me. I'll still see them around as I'm having radiotherapy now and you see them all over the hospital all the time in different places. |
| 29
OCTOBER 2002 Radiotherapy Clinic, Nassau Street, London |
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Well up at 7am (well nearly!) to get ready for transport. It turned out the driver, Vicky, lives in the next road to us....so she could've had a lie in as well..... Got there on time, but was sent to the wrong department twice, third time lucky! My foot was so swollen I was worried the boot they'd made wouldn't fit me this time because of it, but it was OK. I had the boot put on and moulded/shaped to my leg, it was heated and cut so that it would clip to the base of the CT scanner/radiotherapy machine to make sure it is in the right place each time I'm zapped. I also had two tattoos on my leg, just dots above the knee, no red devils or anything for me....shame!! I was quite liking that idea, although too much of a coward as it involves needles of course!! There were five people in the room all doing all sorts of things, measuring, scanning, watching, learning, all sorts. It took about 20 minutes to set it all up and measure things. I was told next time would be longer, but no so uncomfortable. I had to leave my walking frame at the side of the room, it was strange to be away from it. Saw Liz in the basement and she mentioned she'd handed out more of the posters I did about The Furry Monkey website. I've had some wonderful emails from people I don't even know and we're all fighting the same thing. It's a select little club we all belong to here....no interlopers! Anyway, got one more session for radiotherapy then a break, which I'm quite looking forward to. I just want to have no one prodding me and poking me, I know it's all for my good, but I would like to be left alone for a while......please...... I'm still getting chronic indigestion, but the tablets they've prescribed help a lot more and it's not quite so bad all the time. You can put up with it. Also I get so tired.....it's amazing how tired. Then when I go to sleep, I can't! Arghhh!!! |
| 30
OCTOBER 2002 Home |
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No Jane or Suzanne today, but a new nurse, Margaret. She is lovely and dressed my arm in double quick time! She was worried about getting the bloods off in time, but I said the hospital wanted them 10 days post-chemo which made her day! No mad rush..... She said I am in good company, Anne Kirkbride has NHL and is doing well (Deirdre from Corrie - all you Corrie fans out there!). I had forgotten exactly which cancer she had, but she's looking good. Just don't think those glasses will do anything for me though do you?!?!? She had not seen a PICC statlock like mine before (it's the bit that holds the line in your arm and stable - I'm getting quite the expert now!). She liked it. They all get so excited about lines and unblocking...I suppose it's the same as us when we get a software program to go right, or a customer is a happy bunny with something we've done! Well no more tests to go for until Tuesday now which is good. A nice long rest, zzzzzzzzz.....zzzzzz......zzzzz....... |
