20-Jan-03 | 26-Jan-03 | 28-Jan-03 | 29-Jan-03
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| Appointments:
01-Jan-03
| 03-Jan-03 | 04-Jan-03 | 10-Jan-03
| 11-Jan-03 | 15-Jan-03 | 17-Jan-03
| 18-Jan-03 | 20-Jan-03 | 26-Jan-03 | 28-Jan-03 | 29-Jan-03 |
| 01 JANUARY 2003 |
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Well here it is. A New Year (which I missed seeing in!). I feel a lot better today, still quite achy but at least that horrendous pain has gone which is a real blessing believe you me! I have had my fill of pain, but now realise it's going to be here for quite a while!! Possibly forever with some things I've got side effects of. So to everyone, I wish you all A HAPPY NEW YEAR and may it be a lot better than the last one for all of us, specially all my new friends made since I started this website. We all need some good health news and long may it continue for us. |
| 03 JANUARY 2003 |
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Jane came and dressed my leg. I mentioned about the pains I'm having and taking morphine daily. She tried to phone the Doctor, but would you believe it, in the whole Surgery there was not ONE doctor!!! I hope no-one was desperately ill as there would be no one to help! She said she would speak to my Doctor when she went back to the surgery later in the day. This afternoon, Jane called, good as her word. She has explained about my pains and the Doctor has now prescribed me MST, a continuous morphine tablet. Quite strong, but as long as it keeps the pain away I don't care! The Doctor also suggested I get back to the hospital and speak to the consultant and see what they think, may have to have more tests, the Doctor doesn't have any idea what it could be and this is the best thing. They are the experts I suppose and know all about me and my medical history. My brother couldn't finish work in time to collect the prescription, however Anne said she would collect it for me. The chemist didn't have any of them in and would have to order them for a 9am delivery tomorrow. I took more liquid morphine to ease the pain and would wait..... I also phoned the hospital to try to get the ball rolling early! I have an appointment for 10th January at 10:15am. Can't wait. It's quite worrying not knowing what it is. Your imagination plays all sorts of tricks on you! |
| 04 JANUARY 2003 |
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Got my MST tablets!!! Taken one and they are fabulous! I'm becoming a real druggie! As long as I have my purple pills within easy reach I'm OK!
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| 10
JANUARY 2003 UCLH, London |
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The ambulance arrived at 8.15am - no car this time. I got spoilt with those - the ambulances are quite a cronky ride and can give you headaches and make you ache more! Still it gets me to the hospital and I'm not complaining!! We had to collect six other patients and go to three hospitals, so I arrived late for my appointment, approx 11.30am - they know hospital transport patients can arrive at anytime and just slot you in. I wasn't kept waiting long and was soon called in by Dr Cassoni. There was a student there, which I didn't mind. He was told about my history and that it is a rare cancer. "Your hair is growing back!" was the first comment. Even my eyebrows are coming back as well, slowly! I explained what had been happening and she asked me lots of questions, and examined my back. I was then sent for blood tests which was in another building - two roads away and down a little alleyway and into another waiting room! I spend most of my time in waiting rooms, I've read a lot of magazines and now take my own books - I've read all the magazines there! Then I had to go to have some x-rays, another waiting room!! More book reading. A good murder story this time.....no change there I hear you all say! I was then called in and had to change into one of those gowns, the ones we all hate!! I was called in to the x-ray room and had two x-rays of my back done, and two of the side view of my spine. Then it was on the way to the 2nd Floor and Nuclear Medicine. I know the hospital quite well now and even direct others if they look a little lost sometimes!! I couldn't get a date immediately, so left my card with her and that my next consultant appointment is 31st January with Dr Cassoni. I should hopefully get a date through the post next week sometime. Dr Cassoni also examined my leg and said it looks like it's starting to heal which is good and that I would still get some small blisters appearing. She said it still looks red, but will re-examine it next time I see her in a couple of weeks. She also wants me to see Mr Briggs (my other consultant) about my back/side pains. I already have an appointment with him on 6th February so will discuss it with him then. I've been told to rest my leg more, so once I've updated these pages I will lie down with a good book and a cup of coffee I think! Sounds like a nice way to spend some time! |
| 11 JANUARY 2003 |
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Was feeling so awful before I didn't mention more bad news. John's car has been stolen. We are lost without it, it's difficult getting out of my little sporty number now. I didn't realise how bad it was if you had dodgy pins. Now I know! Sorry John - I now understand how bad it is for you getting in and out of it in the past! Let's hope the Police find it soon! We NEED it back!!!
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| 15 JANUARY 2003 |
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Been feeling really fed up with this pain all the time. Both from the leg and my back and side as well. The purple pills are lovely and take it away but it makes me feel awful all the time. At last though I've got my hospital appointment for the scan. 23/01 at 12.30pm - so I will be going on morning transport at approx 8am and then sitting around until 12.30pm, then have my injection of the radioactive gloop (yes Graham, that word is back!!). Then wait for another three hours whilst it goes around my body. Finally I have my scan at approx 3.30pm assuming it's all running to schedule. Then home in afternoon transport so that could be anyone's guess. Best time if we leave at 4.00pm is approx 6pm. Failing that it could be anything up to 9pm! So a fun filled day in UCLH again. At least it will put my mind at rest hopefully about all this extra pain. It's not fun and I wouldn't wish it on anyone (unless of course you've REALLY upset me!). My next appointment after that is 31/01 when hopefully we will find out if all this pain and suffering has done it's stuff. I'll admit to being VERY nervous now! I was thinking that the radiotherapy is now finished so everything will sort itself out. I didn't realise exactly how LONG this is all going to take. The chemo takes a year to get out of your body so I should expect a few odd things to happen now and then. I've gone from one appointment to another and not had time to think of what I am going through too much. The more I think about it the more frightening it is sometimes, not just for the events over the past year, but what is to come for me......
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| 17 JANUARY 2003 |
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Oh dear, pain is back with a vengeance!!! Why I hear you say - Karen is taking morphine. Whoops - admission time, I stopped taking it a couple of days ago as I thought it was better now. So much for that train of thought then! Back on it now and it seems to be doing the trick again. I won't be making that mistake again. Am anxiously waiting to go to UCLH again. Who would believe it, someone WANTING to go to the hospital. I just WANT to find out what is causing all this pain. Pain doesn't just arrive for no reason. I remember all those months ago being sent to the chemist for some painkillers by a Doctor at our surgery (NOT my Doctor). If she took the blinkers off, I am convinced my cancer would have been found a lot earlier. Still not a lot I can do now is there? |
| 18 JANUARY 2003 |
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Got a letter from UCLH saying I now am to have an "F Minus" test. Not sure what this is - will have to call them on Monday as they also say the date has changed as well. |
| 20 JANUARY 2003 |
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Phoned UCLH
and apparently I am not now having the bone scan this week. I am now having
the "F Minus" test which is another type of PET scan. It is
more detailed than the Bone Scan and will give the Doctor's more idea
of what is happening in this old body of mine. I'm disappointed that the bone scan is not happening but glad the F Minus test is more detailed. Sounds like a better test. Not many people have heard of it though, it's quite new maybe?!?! Also because of the delay with the F Minus test (it's not until 12/02) then the Bone Tumour Clinic appointment has to move as well. It is now scheduled for the 21/02 instead. More waiting.......ho hum.......... |
| 26 JANUARY 2003 |
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Well John's car has still NOT been found. The police have written to say that they are not investigating it further. So he has given the keys and log book back to the insurance company. I got my sporty thing all taxed and tested so it is legal and on the road. Shame it's not ME driving it though. I must admit to now realising how difficult it is to get in and out of when you have dodgy pins. Not having had them before it caused me no problems. It's been a grotty day today, NOT only with the weather either. Let's just say that it was a little tense. It's a shame as my weekends are looked forward to as it's my only chance to get out, apart from hospital visits. This just makes it horrible.
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| 28 JANUARY 2003 |
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You'll NEVER guess where I went today?!?!? Go on three guesses.... No? Well it was to work, well not to WORK but TO work. I visited for a day. I was a bit nervous actually, my hair has started to grow back, but no one from work has seen it really. It was a strange feeling after all this time. They have also moved buildings as well so I wouldn't be going back to where I'd worked for all those years. Anyway I had a really great time, going from bay to bay (it's open plan) and talking to everyone and sitting and chatting. We went to the restaurant and a gang of us where there chatting away. Even after a year of cancer treatment though, I was told I was happier than some of them. Morale is NOT at an all time high shall we say! I was getting tired by the afternoon, but it was my mouth doing most of the work so I just kept going, talking to old friends and getting updates as to what has been happening whilst I've been gone. When I got in I had a bite to eat and then sat on the sofa, and promptly fell asleep! I was shattered. Getting up the stairs did some doing as well as my legs (yes both of them!) were so swollen and tight. Still at least I hoped for a good nights sleep.
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| 29 JANUARY 2003 |
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Well I sure paid for that visit to work in MORE way's than one! Am I shattered or am I shattered. I think it was TOO MUCH in one day, but it was so good to see everyone. My leg is still swollen although the other one has gone down a bit which is good. It's going to take a while to get over this tiredness that's for sure! Phew.... Who would've thought just talking and chatting, and a bit of walking around an office could do this. Still it just goes to show how long a way I've still got to go doesn't it. This is the thing that really gets me, how tired I feel all the time and that the slightest exertion makes it SO much worse. It's hard to deal with the tiredness. However, if I'm asked if I want to go somewhere, then I go, I can always sleep later can't I!!
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