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| Appointments:
| 03-Nov-02 | 04-Nov-02 | 05-Nov-02
| 06-Nov-02 | 07-Nov-02 | 10-Nov-02
| 11-Nov-02 | 12-Nov-02 | 13-Nov-02 | 18-Nov-02 | 20-Nov-02 | 23-Nov-02 | 25-Nov-02 |
| 03
NOVEMBER 2002 Home |
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Well we're into November now and you can tell. It's cold and grey outside and my poor little head is so cold. Even indoors with a hat on I'm cold!! That's when I'm not having a "hot flush" of course! Yes, I've got the worst of both worlds here. As you can see I'm a bit "fed up" today. There's Christmas adverts on the TV and I'm stuck here - pretty boring huh! I really miss my independence and just going where I want to go. Still I've got the excitement of the Nurse coming around tomorrow and dressing my arm. I wonder who it will be this time? |
| 04
NOVEMBER 2002 Home |
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Jane arrived to take bloods, she had to drive them to the hospital as it was too late for them to get taken up the usual route. She decided not to dress it this time as it looked OK. (Not GUNKY Graham!) |
| 05
NOVEMBER 2002 Home |
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Ready for transport at 7.45am - a busy round this morning as Alistair phoned last night to see if he could collect me early....we had three others to collect from surrounding areas. Two of them I knew, Wes and Trisha as I'd met them before. They were all having radiotherapy - Trisha and Wes are on their last three sessions....lucky them! I sat in the waiting room and read my book waiting. I didn't have to wait long and was taken in to the Planning Room. I had to lie on the CT scanner machine ready for more lining up. It took quite a while and there were lots of people in and out all quoting numbers and moving the bed and the machine. More lines on my leg, some look just like the old target scope which is worrying!! I had to see Dr Beatrice to sign the consent form for my radiotherapy. I hadn't signed one, I signed so many forms I don't remember what I had signed. Well it's all signed now and my radiotherapy starts on the 18TH NOVEMBER. My nan's birthday. Then it's a whole month of radiotherapy in London - travelling up each day. I hope I don't get too tired with this lot. It's bad enough already yawning all the time! Transport home was not too bad, we got home around 4pm - early for a change!!! No night time shifts for me this time! Trisha and Hilary were there again. I thought I'd missed them as they were supposed to go back at approx 11am. They missed the car and had to wait. We had a great giggle and I felt good to be amongst others who understand all the problems I have and are experiencing it the same as me. Although they have different cancers our treatment is very similar. It's just nice to talk to someone who understands exactly. |
| 06
NOVEMBER 2002 Home |
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Jane is coming today to dress my arm. However before she arrived Liz the PICC Queen called. She'd been speaking to my doctor about the PICC line and said that it would be better if it came out now. They wouldn't want it to get infected and it had done it's job. Although I still need blood tests for radiotherapy the pros/cons of keeping it in were outweighed. The other thing is that I'm running out of Warfarin and this just adds to the cons. I'm up in London to see Mr Briggs tomorrow so asked if we could call in to UCLH and get it taken out there if someone has the time. Liz said this would be a good idea. I'll call in after seeing Mr Briggs and see if it gets taken out or I'm given more Warfarin to take. Jane cleaned the PICC line but didn't flush it today as it was done on Monday when she took bloods. It's amazing how non squeamish I am about this now. The line was...now how shall I phrase this.....sticky? messy? a bit mucus-y? Definitely not GUNKY huh Graham!!!! I'll get the thesaurus out for you and see what else I can come up with!!! ;-))) I also have a problem with my eye now, it looks like a Stye and is really sore. I suppose it's cos my immune system is down. Anyone tried typing one eyed?!?! Ha ha ha! I'm feeling a bit more chirpy now, but still am itching to go out shopping or just out somewhere nice for a change. With all my treatment I'm going to miss shopping, so maybe John is right and I WILL have to do my christmas shopping on the Internet. I'm going to miss a lot of things now Christmas is coming..... |
| 07
NOVEMBER 2002 Mr Briggs Clinic, London, W1 |
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Back to Mr Briggs to see how this tumour is doing. We had a bad start, John's car wouldn't go and then we hit the most horrendous traffc jams and was a bit late. I hate being late for any appointment but it was unavoidable. I had a couple of x-rays taken, even the x-ray machine wasn't playing the game. Mr Briggs then called me in. He said I was looking good and he was very pleased with me and said I'd handled the chemotherapy very well so far. The best news though, is that after seeing the x-rays, he said if I promise NOT to take any risks, I could walk without the frame!! Wahooooo!!!!! Good news or what! I'm nervous about walking without it and am shaky but so pleased I can walk without it. I use a walking stick and am taking it slowly. I still go up and down the stairs one at a time as it doesn't feel safe to me to just walk up them normally. The only thing is, with a frame, people pay attention and give you more consideration. I've been walking with a stick and people have knocked it out from under me and just ignored it, even when I come out with a sarcastic "don't mind me" comment or something similar. It's a bit worrying but I'll take it easy. |
| 07
NOVEMBER 2002 Radiotherapy Department, UCLH, Nassau Street |
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After being up on cloud nine from seeing Mr Briggs I called it to see Liz (the PICC Queen). She was going to see about taking my PICC line out. I waited in the Waiting Room (this would be my normal daily routine from next week for a month so I was practising!). She came and we went along the corridor to the "Implant Room" - this was a bit worrying, but nothing to panic about. It's just where they do most of their work. I suppose it is an implant really. Just not what I thought! The other lady there was asked if she'd taken a PICC out before and said no - then she said - "should we be saying this in front of the patient??" I replied "not to worry, just go for it, if anything goes wrong Liz is here!" So she did.... The PICC line came out fine, I even watched, boy am I getting brave these days!! It feels odd without it and still feels like it is there. Strange! So no more "gunky" words Graham!!! |
| 10
NOVEMBER 2002 Home |
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Ohhhhh dear, those old familiar feelings are in my back again - I have my first dose of morphine at 6.45am roughly. It dulls the pain a little which is good. I take another dose at 11am and feel so tired. That morphine is disgusting stuff!! Yuck!!! Was supposed to be going out but got no further than sleeping all day in bed. Sounds nice but when you're in constant pain, it's not believe me. |
| 11
NOVEMBER 2002 Home |
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Got a sore throat, bunged up nose, headache, earache, backache - all sorts of aches. Thought it might be the remains of yesterdays back attack. Got up, but spent most of the day asleep on the sofa. Feel crap. Worried about not updating the website and that people would wonder what is happening to me. |
| 12
NOVEMBER 2002 Home |
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Called UCLH as I had a high temperature, chesty cough and sore throat and aches. They said to call out my GP and had a FBC (Full Blood Count test). Dr W came out and examined me. He prescribed antibiotics (Erythromycin and Penicillin). Also to take paracetamol to help the pain and reduce fever. A bit of a sledgehammer to crack a nut, but as I was a "difficult case" this would be better for me. He had heard of my reputation as a "difficult bleeder" - in the nicest possible way - it's to do with my veins!!! He said whilst talking to me he spotted a nice vein and would try that one. He had a very fine needle and used the blood pressure wrap to put pressure on my arm, so much nicer than being slapped!!! He explains things in such an easy way that you can understand. He also managed to get blood the first time without causing me to have a huge bruise or be in pain when he did it. Why can't they all do that. I wouldn't mind so much then!! It's all in the training I suppose. He worked in a special care baby unit and you need lots of skill to get blood from their tiny veins. Jane came later to take the blood to the hospital. He said if we get a call later in the evening it would be a "dial 999" call and straight to hospital as it can turn to pneumonia really quickly. Luckily we had no call.....phew..... |
| 13
NOVEMBER 2002 Home |
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Still got bad back pain, a hot water bottle, lots of drugs and a cosy bed or sofa are wonderful. I sleep a lot lately. It's good for me, but I feel SO tired all the time. The antibiotics should kick in after 24 hours according to Dr W and he was right. They did and I feel a lot better, if I could just get rid of the back pain it would be a lot better too. I'm still not eating a lot, have had a bowl of shreddies and a packet of mini cheddars and about four mugs of Options Chocolate since Sunday. I just don't feel like eating at all. I know I should but thinking of food just makes me feel queasy. I did have half a bowl of soup tonight though with a piece of bread. |
| 18
NOVEMBER 2002 Radiotherapy Basement, UCLH, London |
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Feeling a lot better after my virus. The antibiotics really worked for me. I've still got a niggly cough left but nothing like I was feeling which is good. I was worried they wouldn't let me have radiotherapy but it looks like it's going to be OK now which is brilliant. Otherwise it could go right up until Christmas which I'm not keen on! Paul from Transport arrived fairly early, so off we went. It was a normal journey, no extremes of time which is good. Went to the basement treatment rooms (all the radiotherapy machines are in the basement). I had a short meeting with one of the Radiotherapy Nurses beforehand about what was to happen, what side effects there might be, if I was worried who I could talk to etc. I started to read my book (called Deja Death! just the sort of reading material for a hospital!!). I've seen a good book if anyone is interested in things like that - it's called Death - A Users Guide - it's looks like a good read to me!! After a while they came to fetch me and take me to the radiotherapy room. I had to lie on this huge machine and have my boot put on and clipped to the machine. Then the marking up starts. My leg looks like a target practice for the Army!! They all go out of the room and the machine does it's stuff. Then that's it, you are unstrapped and free to go!! Unless of course, you have to have x-rays like me - it then takes a little longer, but is no problem really! |
| 20
NOVEMBER 2002 Radiotherapy Basement, UCLH, London |
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Yesterday and today were very similar. Quick journey up to London, only a couple of us in the waiting room so was called in and treated, then off to the Transport Desk ready to go back home. It was the quickest we had all been treated and off home again. Arrived at the hospital about 1.30pm and was back home at 3.30pm. It was a shame we got out so quick in one way as Graham was going to take us home via Marylebone and show us the Christmas Lights yesterday. Perhaps another time. Bernard almost had a short day today, but as we were going home, Control called him and gave him another job! Still he didn't seem upset too much. That's the nice thing about all the drivers I've met, they're all so nice and helpful. We'd all be lost without them. |
| 23
NOVEMBER 2002 Radiotherapy Basement, UCLH, London |
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Again similar days, although I had a nice chat with a friend across the road. We hadn't seen each other in ages and typical, just as we arranged to have a chat before I went off to radiotherapy, I get a phone call saying "could I be ready early for transport?". Not a problem really - I'm grateful for the transport guys who take me to London each day. I'd be lost without them. So my chat was cut short, but I got to London early and was home by 4.30pm!! Yippee - an early start to the weekend!! ;-)))) Jim and Jane were there again, we have quite a giggle in the car going up to London and it's nice. I feel really tired when I get in, fit to drop sometimes, but now, it's gone midnight and I'm wide awake. Same as last night, I didn't sleep at all well and had only a couple of hours at a time asleep. I didn't get to sleep until 2am, then was awake from 4 until 6 again....... Not sure why, as I'm not on chemo now. I suppose it's my body clock readjusting itself. Jim was told our radiotherapy machine is being serviced on Monday and we'll have to go to one of the other ones. I wasn't told this though, he said I'll be left on the machine waiting until Tuesday - nice one Jim - thanks!!! |
| 25
NOVEMBER 2002 Radiotherapy Basement, UCLH, London |
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Well it's the start of my second week. I can't believe it's gone that quick already. Today I had a review with the Clinic Nurse. We just talked about how it's going and if I had any worries or concerns. I do get more pain in the leg now and mentioned that. Also how tired I am and she said it would get worse as treatment goes on. I think the journey is the most tiring part. I know, I know, I'm not driving, but it still gets tiring. We've all said the same so it must be true. Jane one of the ladies I've been travelling with has to change her appointments to mornings now, so we won't see her now. It will be strange as we all travelled together for a week almost and had a good laugh. We got to see some of the Christmas Lights in London today, they are a beautiful sight. Have a look if you get the chance to go. Harrods is amazing! Imagine that electric bill...phew!!! |
