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| Appointments: 02-May-03 | 17-May-03 | 29-May-03 | 30-May-03 |
| 02
MAY 2003 UCH, London |
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Can you believe it has been over a year and I'm still having scans and tests! Amazing huh! This time it's a CT scan of my chest. I'm having this to check there is nothing there after the surprise of the lymphoma in the right leg. I rang Wednesday to check that no injections would be necessary as I'd had the gallbladder op on Saturday. They said no contrast dye would be used. This put a smile on my face! No injections - yes! So we had an interesting journey in the ambulance up there. We had to direct the driver as it was her first time and she was on her own. It turned out OK and we had a good laugh, although the jam on the M25 on the way back wasn't much to laugh at! So near but so far! The others in the ambulance were going to Middlesex (which I know extremely well now!) this time I was going to UCH. Memories of the bone marrow aspirate reappeared but I soon got rid of them! The CT scanner was playing up and also they were running two hours late! Wonderful! After much waiting and people complaining (can you believe there is ONE machine there!! stupid or what!) it was my turn. I had to change into those awful hospital gowns and then into the CT room at last. I managed to get on to the machine OK, and then it started over my head. Oh yes, they also said it was abdomen as well as chest which I wasn't told about, but didn't mind. The bit I did mind came next, the Doc came in "we need to inject you now" - so I lay on the machine and crossed my arms and said "I was told I wouldn't have that!". He looked surprised and I explained about the op and my phone call and he said it could be one of many reasons. Not on my notes, the consultant decided at the last minute, anything. Anyway, he tried and couldn't get a vein (this sounds familiar doesn't it!). He called another doc and he tried, after a couple of attempts, he couldn't find it either and they gave up. I hope the scan goes OK without it. I will have to wait until I see my consultant to find that one out. So that was the scan over and done with. NBM (nil by mouth) from 6pm the night before until 3pm the following day but I could cope, I had in hospital. The ambulance driver offered to get a tea or coffee for me, but I came prepared with bottled water. I like it more now, it must be being denied it that makes it more appealing! So, I'm off to make a fruit tea now... hope you all enjoy the long weekend and I hope it's a pain free one for all of us! |
| 17
MAY 2003 Home |
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Well at the moment it's all doom and gloom. John has been made redundant so is looking for work (any vacancies let me know by clicking on I have a job for you!). I have no income at all as the Benefits Agency have stopped it from April and I have had NO response to my letter sent a while back. I could be made redundant at work as well. Bertie has been ill and had to go to the vets and my printer has run out of ink and I can't afford to replace it! It's all these "official" letters I have to keep writing. It's bad enough being ill without all the added stress and anxiety of everything else at once. That's the moan over for the day! I've had more appointments made for me at my hospitals. One for the Gallbladder Clinic in June and one for the NHL Tumour Clinic in June. Guess what, they were both on the same day! So I had to change one of them, then got a letter saying the time had changed but not the day. Another phone call and then a confirmation that the day and time had changed! Nightmare or what. I've had more pain in my legs lately. Also another blister appeared that was getting bigger by the day. My leg is red and sore and very very tender. I've got more questions to ask about it when I have my review with Dr Cassoni, but I've got a wait a while until then. Also my gallbladder "war wounds" are sore as well. I'm not in the best of health at the moment, sometimes it feels like all you're doing is taking steps backwards rather than forwards. I get frustrated at not being able to do much without getting whacked out and not being able to do what I used to without pain. Still I've got some ideas for things on Furry Monkey so this will keep the brain active for a while. That's another thing as well, my memory shows no signs of coming back either. I had some depressing news about my immune system as well. As I said, it's all doom and gloom at the moment (it never rains but it pours!), hopefully it will improve soon. I've had enough for a while, just give me a break huh!!!! PLEASE!!!!
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| 29
MAY 2003 Home |
| 30
MAY 2003 UCLH, Bone Tumour Clinic |
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Here I am off to the Bone Tumour Clinic again. Hopefully it will put my mind at rest. I've been a bit worried about the pain and swelling in my leg. No matter if I rest or walk, it still gets swollen, is very red and sore and seems "hard". After going to collect another patient (in an ambulance this time) it turns out she is not going and the Ambulance staff weren't told. They get a lot of that. Another place where the NHS wastes money - I could tell old Tony Blair a few things (many of them I couldn't put in print here either!!!). We arrived about 10.20am and my appointment was at 11am. At about 10.30am I was called in - this was a first! Seeing the Dr 10 mins after arriving. Anyway I went in and sat down. I was given a form to go and get some x-rays done of both legs. The X-ray department is the other end of the hospital! Still I also had to have a blood test as well, which is past the x-ray department and across a road and into another building. The queue in x-ray was quite long so I'd have time to have two blood tests (ha ha ha!) so off I toddled. Guess what? I was recognised in the Blood Clinic, I was asked to sit in the chair and which arm would be best when I heard "Oh no, not you!". My reputation goes before me everywhere I go in hospitals!! So they tried to get blood, lots of tapping of arms/hands later he said "I know it hurts a lot more but would you mind if I did it in your wrist?" "No, as long as it works I don't mind one bit. They've tried everywhere on my body so the wrist isn't as bad as some places!". Anyway, it worked first time, can you believe it? Maybe it's because my arms have had a rest for a few weeks since my operation. I then went back to x-ray and waited in the queue. Eventually my name was called and in I went. The radiologist looked confused. He did the x-rays of my left leg and then said the form didn't confirm what was to be done with the right leg. I said the Doctor wanted x-rays of both legs, but he told me that without the correct written authorisation he couldn't just do it. He would phone through whilst the x-rays were developing. After a small wait, he said that they were OK and to deliver them back to the clinic. So off I toddled again to the other end of the hospital. Once in the Clinic I gave them the x-rays and she looked confused. What is happening here today?!?! I explained what he had said and she told me to leave them with her and sit in the waiting room to see Dr Cassoni again. So I waited. Not long, then I was called in again. She said although the bone looked abnormal it was improving so that was a good sign in my book! The Lymphoma is still there and she once again never mentioned the magic word of remission. :-(((( She then asked where the x-rays of the right leg were. I explained what had happened and she said "oh no, I put on there exactly what was required, do you think you could go down there again?" "Well, as long as it helps and you can put my mind at rest about the pains then I'll go". So off I toddled back to the other end of the hospital to the x-ray department. The guy who had done my x-rays saw me and said "oh dear, they want the right leg don't they?" Even the Receptionist was puzzled and I had to explain to him why I was back so soon! I had three x-rays taken this time, as the form still wasn't clear about what was required. I had three done to be on the safe side she said! So off I toddled again, back to the Clinic. I saw Dr Cassoni and Dr Seddon in the corridor whilst on the way and she looked at them then. She could see nothing that would cause concern and asked me to take them back to the Clinic. Phew, loads of walking today! I asked about the swelling and hardness in my leg and it is Lymphoedema, I'd already been told after the radiotherapy that I had "temporary Lymphoedema". However when speaking to others in the Lymphoedema Group they said once you have it then it's there for life and not temporary. So that was right. Dr Cassoni dictated a letter to arrange an appointment for me to see the Lymphoedema Nurse to discuss ways to live with the pain and swelling and how to hopefully alleviate some of the symptoms. Also the "dent" in my leg which appeared after radiotherapy is not going to disappear. It is a side effect of the radiotherapy, not everyone gets it, but I have - oh lucky me! She examined me and found nothing untoward which is good. Also the sore throat is nothing to worry about as she could feel nothing suspect on my lymph glands. This is good, I've just got a normal run of the mill sore throat. It's hard not to worry about these things - other people would just say it's a sore throat, I would've in the past too but now you're never sure if it's connected to the Lymphoma or not. You never know what is considered "normal"!?! So back into the ambulance and off home again. Our driver(s) were a good laugh and one of them had been to collect me before. "Your hair has grown back well!" she said. Well I'm going to stop rambling now. Our neighbours from hell have got the hammer and drills out again, 7.30am they started this morning. All we want is some peace and quiet. It's not a lot to ask for is it. Perhaps they need some information on the Noise Abatement Society!!!
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