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| Appointments: | 02-Aug-03 | 04-Aug-03 | 07-Aug-03 | 20-Aug-03 | 26-Aug-03 | 27-Aug-03 | 28-Aug-03 |
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August 2003 Home |
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Well it's been a bit of a nightmare time lately with technology. It's been occupying most of my waking moments trying to think WHY it WON'T work. I've set up 100's of email accounts before with no problems, so why won't this one work then?!?!? It's driving me nuts. Anyone with any ideas, please email me and any help would be appreciated. Now is NOT the time to have email probs. I'm a bit anxious about my test next week, the MRI scan. I've been getting lots more pain, not only in my bad leg but the other one too which is worrying. I've been busy making a list of questions for Mr Briggs appointment this week too. He's going to love me! There are quite a few I need answers to. He's normally good and answers all my questions so that will help. I can't wait for them to get here so that I can put my mind at rest. Along with the email problems, it's had my mind spinning at night and sometimes I don't get to sleep until 3.30am or 4am!!! Then it's time to wake up before I'm ready. I read an article recently, and the writer summed up a lot of how I'm feeling at the moment. I've written some of it here for you to see.
Perhaps some of you will understand more now..... |
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August 2003 MRI Department, The Middlesex Hospital, London |
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It's arrived at long last. I've been waiting FOUR months for this appointment. I was awake early and ready by 7.45am just in case they arrived early as some of them do. I knew it wasn't any of the drivers I know as some of them phone first to confirm. Anyway at 10am I knew they weren't coming that morning. So the next time to be ready was at 12 midday. I changed as it was so hot. Could be ready again in a flash so it was better. At 1.15 no one had arrived. You are not supposed to ring until 2pm but as my appointment was 2.40pm it would be too late to ring then. So on the phone I got. That is where my problems started. I eventually got through after a few failed attempts. It was very hot here and this just made it worse. Here I was all ready to go and no one had arrived. I am grateful for hospital transport, but I really need this scan which I've waited FOUR months for, and it was a real let down. The lady at the end of the phone was very helpful, after many phone calls her end, it turned out to be a mis-communication their end and the transport was NEVER booked, so there I was waiting for something that wasn't going to arrive. Why is it always me??? Anyway, they offered to reimburse me for a taxi fare, but after I told them it would cost £120+ they found they couldn't reimburse that much. Poor John, who is not well himself, offered to take me. However my appointment was less than an hour away and we wouldn't make it at all. I had to phone again and try to get through to the MRI department. First of all I was on hold, then put through to a fax machine.....arrghhhh!! Another call. This time it worked. They had a slot at 3.30pm I could have if I could get there in time. I took it and hoped we could fly to London, not literally, too expensive of course. Then we found out, the Hammersmith Flyover was closed and that is one of the major routes we took to London. Some quick thinking later and we had done a detour of sorts and was on our way again. This was turning into a farce. We finally arrived with 10 minutes to spare....phew..... It was good when I got to the MRI department though. First of all I had to fill in one of the forms, which I had done hundreds of times before, why they can't keep these on file I will never know. It would save a lot of time and paperwork for everyone. Once that was done, I had to go to the Waiting Room, luckily there was only one other guy in there. He was taken through just after I arrived so I hoped it wouldn't be a long wait. Shortly after that I was asked to go through. There was a choice of music I could have played whilst the scanner was scanning me. It was great really, a nice cold air conditioned room with music playing and me lying on the scanner. Bliss!!! Just the air conditioning was good for me. It is so hot here..... They took three scans, then it was all done, quick and easy (unlike the guy in front of me who wouldn't/couldn't keep still so they had to give up that day). You have to be static. I had my legs strapped onto the scanner bed and I didn't move anyway as my scans came out OK. I've just remembered I forgot to ask when the results would be through. I imagine it will be at my next meeting with Dr Cassoni. I'm going to ask Mr Briggs on Thursday anyway just in case he knows. I have a LONG list of questions for him, he's going to love me! A long entry today. Just keep your fingers crossed for me for Thursday. I really need some good news!!! I'm not sleeping too well with all these questions running through my head at the moment. Hopefully it will allay my fears. Until then,
take care and keep smiling everyone, and let's hope it's a bit cooler
soon!!! |
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August 2003 The Clinic, Park Street, London - Mr Briggs |
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We're on our way to London again, twice in one week. It was more of a wait at the Hammersmith Flyover this time, but we finally managed to get through. I was sitting in the waiting room, reading my latest Murder book when I heard the words "Young Karen" and knew it was my turn to go in. I didn't see the x-ray nurse in the clinic this time, so assumed I wouldn't be having them as she wasn't around. My assumption turned out to be right. I sat down and Mr Briggs said I was looking great and felt my hair and said "well it's grown back very quick and soft - I said it'd be like a babies!" (and he was right!). He started to go through his file. My MRI scan was OK and so was the previous CT scan which is good. He is very pleased with me and said I was a wonderful patient...now where have I heard that before?!?! He examined my leg and said the hardness and soreness, including the swelling is happening because of the radiotherapy. He said that it would always be like that. I asked if physiotherapy would help but he straight away said no. Walking will help strengthen it though and apparently I've been using my walking stick on the wrong side! I was told to use it that way and it's been wrong all this time. He made me walk up and down his office and it felt quite weird, not what I am used to I suppose. It will become better with time and practise. He also asked about the gallbladder and said he was worried before. I smiled happily and said that it was all gone now, after many many weeks of pain and agony and waiting, the operation was finally done and I was feeling good now about it. He asked if it was keyhole and I confirmed that. Also that the surgeon was having a tough time due to the pain I'd been in and it had caused it to twist and get stuck to my liver and other parts inside me! It was a good review and put my mind at rest about a few things. There were a few questions I couldn't ask as he invited my Mum into the review with me, so I will have to save them for next time! He said if there was anything I was worried about or there was any new symptoms then to contact him before my next planned review. It's good to know that he is always there to help. It's at this time that you feel left alone. My chemotherapy and radiotherapy is finished and I don't know what happens now. There has been no-one to explain it to me. I'll have to do my usual thing and find out on my own. |
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August 2003 The Theobald Estate, Home...... |
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Well I've been quiet on here for a while. Lots of reasons really. Some money related, some health related, some heat related, lots of reasons. How much electricity does it take to run a computer on average does anyone know? If so email me. I'd love to know. Well I've been feeling down a lot lately, I've had some news I was hoping not to hear which has worried me. Apparently complete remission is difficult in my particular situation because of the bone involvement. Most lymphoma involves the lymph nodes/soft tissue and causes enlargement of the organ(s) involved. If this returns to a normal size and there are no manifestations of disease it is considered complete remission. With bone involvement this does not happen. My marrow is not enlarged but of an abnormal pattern but with sucessful treatment changes slowly. Complete remission is a term with a very specific meaning that cannot be applied to me for the reasons mentioned. Even complete remssion is one step only to cure. So my logical thinking says, if I will NEVER be in complete remission, then that means I will never be cured. Frightening. One has to wait to see. Most relapses occur by two years, some between 2 and 5. It is the time free of disease progression that will be most important. Nothing to worry about at this stage, I am as good as I could be at the moment, but my Oncology Doctor is sending me a letter. I'm anxiously waiting for this, and every time the postman calls I'm wondering "is it here today?" Anyway apart from that I've been cheered up by my good friend Carol, who took me off to the cinema on Monday. We both needed cheering up and had a good laugh. Just what we needed on a boring Monday evening! I went to renew my library book today (you know I ordered a special one from the US on NHL and it took two months to arrive). Well it now appears that someone else has reserved it and I can't finish what I was reading. I asked to reserve it afterwards and was told there would be a fee to do that. I'd already paid once to request the book, I was so annoyed. It wasn't even in the country before I requested it, now someone else has reserved it. I can't afford to pay again, perhaps I'll ask Santa to see if he can get it for me for Christmas, it is only 130'ish days or something now isn't it? Our local garden centre has just taken delivery of it's Christmas Trees so it can't be far away! Ho Ho Ho!!! As I said earlier trivial things get to me, and today it was one of them! I was so annoyed at that, but there is nothing I can do really. John has been to the hospital for his second injection of this new drug. He had to self inject this time, and he said it was easy to do. Not so sure I could do it that's for sure! I'm a BIG coward where needles are concerned, even when you've had as many as I have I still don't like them. You'd think I'd be used to them by now. Afraid not! Anyway that's it for now. At least the really HOT weather has cooled down now. I've had some sleep lately which is a novelty. Good night for now all, pleasant dreams......! |
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26 August 2003 The Dentist visit and other things..... |
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Nothing to get too excited about, just a visit to the Dentist. All went well, who would've thought I'd ever be pleased to go to the Dentist, after so much time without a visit and then a root canal put paid to that. I'm now keener to go than ever, a nice pleasant place with proper music, and a friendly team. We then went to a local place by the river, and sat watching the swans. It was a nice day, not too hot and they were all walking about (or rather waddling as they do!). However it got worse. A man came in and parked near the front. I won't say too much here as it's part of a Police Matter now, but he was just being a nuisance, throwing rubbish, teasing the swans and geese, then he threw some food out of the window and started his car. We thought he was going to reverse straight out, but he didn't - he went on full lock and ran over a swan and a goose. The poor swan fell down and there was blood coming out of his leg and he couldn't move. His mate was sitting next to him the whole time. Not leaving him, it was so sad. John tooted his horn to get his attention and we all got out of the car and stopped him. We said he'd run over a swan and injured it and all he said was "oh dear, have I?" and went to drive off. Mum had to stop him running over more swans on his way out. We called the Swan Sanctuary and they came out really quickly to help the swan. They managed to get him easily as he was still on the floor just dazed I think and obviously in pain. I really hope they throw the book at that bloke, how on earth someone could do that and then not even bother to help I don't know. I just don't understand the mentality of some people. They said to ring in a couple of days to see how the swan is, and that Dot would be following up the call with the police as we gave them all the details of the car and driver. What a sicko to do that. Poor swan..... |
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27 August 2003 The Royal National Orthopedic Hospital, London, W1 |
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I'm due to see Mr Briggs at his clinic in London. One thing I haven't mentioned until now, is that I have had a lump appear on my leg, it's hot, hard and sore/painful. I phoned about it and they said that if anything is picked up on Thursday then I can be seen next week. So as you can imagine, a tad nervous. The ambulance was late picking me up, but we got there in time. I was worried it wasn't going to arrive - again! It turned up though, with one other lady in there already. They didn't know this area and it was all new to them. We got to the hospital early, about 20 mins or so. I was told that my records were not there, and that I didn't have an appointment card. I was only sent a letter. There was also no referral letter from my Oncologist either. I had bad vibes about this! I was right, 1/2 hour passed and still not seen, my appointment time came...and went..... The lady we travelled with was due in after me, but went in before me! Along with several others who arrived long after me. Anyway eventually it was my turn (over an hour late!!!) and the nurse called "Karen" and in I went. I don't think she could pronounce my surname, she had a problem with a few others too! I saw Mr Briggs,
he was surprised to see me and asked how I was there. I said Dr Cassoni
had made the appointment and that I was also concerned about this lump
in my leg. He said he'd check my leg for me no problems. He asked me to
put it up and he examined it, and then he went and got Dr Cassoni to check
it. She wondered if it was in my other leg, but it was the same one as
before. They both decided I need an urgent MRI scan and then it was a
case of who could arrange one quicker. Mr Briggs was winning, and said
he could do it next week. He said it would probably be Monday. I asked if there was anything to be concerned about, but the answer was "it's belt and braces time, just checking to make sure". They wouldn't know until the results of the scan came through. I would have to wait for the appointment, then see him at his Clinic next week, and then again in a months time at the hospital. I was to expect a call tomorrow with the details. However after getting home, which took us over 2.5 hours! I got indoors and then at approx 7pm there was a phone call from his Secretary. I had an appointment at Harley Street tomorrow at 12.45pm for an MRI scan. No hanging about there. At least I wouldn't have to wait until after the weekend I suppose. |
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28 August 2003 London MRI Centre, Harley Street, London |
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Back at Harley Street again, it's like an old friend really. It wasn't the same MRI centre as before though. I had to fill in another two forms, with the usual questions about operations, metal fragments etc. Once that was done I waited some more and then was called to go down to the basement to the MRI machine, down a windy staircase, which isn't fun with dodgy pins like mine at the moment! Still I managed to get down and then was shown into another waiting room before going into the MRI room. I was then taken in to the MRI room and got on to the machine. Another giant polo mint. It is always cold in these rooms and I had a blanket over my legs and a buzzer in case of emergencies and also a pair of earphones to stop the noise. I needed those with this one! I was asked if I'd had an injection before for an MRI scan and said yes, not the last time, but previously - and my veins aren't too good! "Would I need one for this scan?" I asked, "No I don't think so, unless Mr Briggs requested one." In the end it turned out I didn't need one, which pleased me. I had thought about it and wasn't looking forward to it if needed. It took about an hour to have the MRI scan, no music with this one which was a shame. It gives you something to concentrate on apart from the plain old ceiling tiles. I think they should put posters or something up there, perhaps puzzles to keep you occupied! LOL! The nurse then came back into the room and I was bought out of the machine and could get up and off. It is almost second nature to me now. I feel at home with these machines and tests. It's odd, but it feels safe to me. So now I have to wait until Monday for Mr Briggs to get the results from the MRI centre and then he will phone me and I have to see him at the Clinic next week and then again at the hospital in a months time. He said not to worry until I get the results. Hopefully it will be nothing. Until Monday, I wish you all a good weekend - and enjoy! |
