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| Appointments: 15-Mar-03 | Storybook Version | Real Gory Version | 21-Mar-03 | 31-Mar-03 |
| 15
MARCH 2003 Home!!! |
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Well, I am now OUT of hospital - phew - a big relief after being in there for nearly three weeks! I think I'm going to do two versions of the stay, once nice storybook version and the real gory version! Watch out here it comes..... |
| 15
MARCH 2003 Storybook Version! |
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I've been having pains in my back and side as you know, so bad that I need morphine tablets and liquid morphine just to get through the day. I was admitted to UCLH, London for tests. The results came back, I had a gallstone stuck in the pipework inside me, I went and had an endoscopy, suffered a bit, then had lots of nursing care, and then came home. It all ends happily ever after......bless..... |
| 15
MARCH 2003 The Real Gory Version! |
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I've been having pains in my back and side as you know, so bad that I need morphine tablets and liquid morphine just to get through the day. On my review for my tumour I mentioned this to the Doctor and she said to have some blood tests there. I did the same day, going to another hospital entirely (all part of UCLH but in a different place!). She said she should phone me next week regarding the results. That AFTERNOON I had a phone call, it was the Doctor, she would like to admit me as soon as possible. Can I get in at the weekend? she asked. Now I was worried! I was admitted to UCLH, London for tests. Apparently all my results were haywire. I had an inflamed liver, and bilyrubin was up (this is what makes you go yellow! which I was and it was getting worse!). I had an ultrasound test, and the Doctor doing it called in his boss and he prodded around my stomach and back with the ultrasound machine. He said "yes, you're right, it's a gallstone and it's blocking the tubes". So I had a gallstone. I would need an endoscopy to remove it. Depending on how large it was they would take it out whole or crush it. Mine was quite large (typical me!) so they would have to crush it. John was disappointed as he wanted it to put on top of the telly (yuck!). I had nil by mouth for three days as they kept changing their minds about the date it was being done. Eventually I had the endoscopy (where you are put out and they feed tubes and cameras down your throat to see what is going on) on the Wednesday. Sadly it didn't work and they couldn't get to the gallstone. I remember waking just before it was finished and had tubes down my throat and wanted to be sick because of it. It was rescheduled for Friday. I was not eating much at this stage, a few chicken nuggets and tomato or baked beans, followed by yoghurt or mousse. Friday arrives and nil by mouth again. I am allowed a small amount of water to take my tablets and that's it. Good job the morphine is going in through my arm straight into my system! I wake from the endoscopy and am then taken back to Whitbread Ward to recover more. Then it gets frightening. I went to the toilet and well, to be quite honest, you've never seen so much blood in all your life! Talk about scared - my legs went all wobbly and I called the nurses. They told me not to worry (WHAT!!!) and just get back in bed which I did. A lot from here on in is hazy but I will do my best to tell you. The PERT Team arrived (Patient Emergency Response Team) and said they would be looking after me. I was transferred to Lord Athlone Ward first of all. The problems I had were not cancer related so I was moved to an appropriate ward. I was put near the Nurse's Station as I was quite poorly. I didn't realise how poorly until later on. Then it gets worse. I had so many injections and cannulars put into me, I counted 14-20 in one day!! They tried EVERYWHERE, including the groin which was SO painful. They even had to get the theatre anaethatists down more than once to try to cannularise me. My veins had given up, and so had I almost. I really had just about had it. I was wired up to machines and had doctors and nurses continuously around me poking, prodding and stabbing. I know it's their job and they were only helping me, but PLEASE just leave me alone was all I wanted to say. Why are you crying? Said one of the Doctors. Well, it's because you are HURTING me!!!!! Mum and John came to see me every day. John finished work early each day (more holiday gone), came home collected Mum, up to London, see me (usually I was asleep!), then go home, kettle on, tea, go to bed, back to work, come home etc etc etc - what a nightmare for three weeks solid! On the Friday, I really scared them though, although I don't remember much about it. I was wired up to machines all over the place, had an oxygen mask on, and had four lots of blood transfused. (I was still losing blood on the Friday). Along with the other drugs that were being pumped into me. A scary sight!! My Aunt had come to see me on Saturday and she was upset at seeing me like that too. I was speaking to Superman who was at the end of my bed in his full outfit. I also saw handprints and writing on the ceiling, along with creepy crawlies on the floor. It must've been the morphine I was still having. Then things started to improve. The blood loss had stopped, although they were keeping a close eye on everything in my body. Everything was measured and inspected. I don't know how the nurses do it, but one of them said, it's all just cells and stuff really so we look at it as cells. I was allowed out of bed to talk to the toilet on my own. Very wobbly but got there by using my stick and the drug stand as a helper. It was strange, you know when you see people on the tv so drugged up they just sit there, and sometimes play with their fingers. Well that was me! I didn't have the energy to do ANYTHING. I just sat around waiting for Mum and John to come each day. Was too tired to read, watch TV, do anything. Not like me as I get so bored doing nothing and have to do something! I was allowed only 30mls of water AN HOUR. I was desperate for water - food didn't bother me at all, but water, it was all I wanted. I was dreaming of ice machines. Then guess what, they give you lolly sticks with foam on with mouthwash to make your mouth feel better and what happens? Yes I burn my mouth and throat on it. It's burning so much but I'm not allowed anything to help. Agony! My tongue is burnt as well. When Mum and John arrived, he spent two hours stroking my head to help me sleep. It worked, off I went....zzzz..zzzzz...zzzz Also whilst I was being injected and cannularised one of the Doctors kept trying to cannularise me and it didn't work. They are supposed to try three times and if it doesn't work to call the next one up in the chain. This guy didn't do it and kept going even though I was crying my eyes out and in pain. There was a formal complaint made against him for that by one of the Nurses. Too right!!! I was now allowed 60mls an hour. What an improvement. I was also allowed two ice cubes an hour, to help my throat. The porters do not collect ice, so I said Whitbread would let me have some (the cancer ward I was on). They did, they sent across two lots which was wonderful and I'll be forever grateful for that I think! Now, I'm allowed to have some bland food, mash potato, jelly, no ice cream. However the other nurse said I could have ice cream and ordered it. It was nice and cold and I enjoyed it, until an hour later....when it all came back up! I've had some lovely colours, black, brown, blue, green, yellow - amazing, I didn't know it varied so much! I did tell you it was gory didn't I! Anyway, finally on the Wednesday, the Doctor said we may allow you home tomorrow. Yippee said I. What time? Mid morning said he, what time mid morning said I? About 11am said he, how about 10am said I? Well there's nothing like trying is there. Yes, he said 10am is fine. As long as you have no more bleeds and you are OK. One other thing they also said was that they had infection control in as I had a stomach bug now. Everyone has this bug in their stomach all the time and it does nothing, but as I had no immune system and was weakened through the endoscopy treatment, then it had put in an appearance. I have to ensure everything is clean and I wash my hands all the time (which I do anyway). It should clear up by itself and wouldn't stop me going home as long as I could cope with it. Of course I could! If it meant I could go home! So here I am, home at last, grateful to be here. Never want to go back again. I have been told I'm going to Outpatients in two weeks, and they will decide then if I am to have an operation to remove my gallbladder. There are still some small stones in there and it would stop any future problems. It sounds OK to me, the only worry I have is that the same thing could happen again and I'm not sure I could cope with that again. Sometimes the cancer treatment seemed easier than this! Odd I know but true. |
| 21
MARCH 2003 Lymphoma Clinic, UCLH, London |
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I only realised I was due for this appointment late last night, so it's an early start - 8am! We had to collect four others, one of whom I had met last time I went. He said "Wow you're looking a lot better than when I last saw you, Bernard was really worried about you". So was I - when I got there I didn't know whether to be sick or just cry I felt so awful. "You're looking marvellous now". It was nice to hear. I feel good at the moment, although very very tired still. I suppose it's going to take a while to sort out now. Anyway, the clinic was late. My appointment was at 9.45am but I didn't get in to see Dr Cassoni until nearly 11am. There was also a student Doctor in there, which I don't mind. They've got to learn! She said it's nice to see me looking so well. I also saw another of my Doctors who said I was looking good and not so yellow. Apparently my eyes were the colour of daffodils!! Nice huh! Well back to the Lymphoma Clinic. She said the lymphoma was looking good, it was shrinking in size and responding to the treatment so far. She said that if you have Lymphoma in your glands once it has shrunk you are considered in complete remission, but in the bones you can't be. It's a case of watch and wait. She also said they had noticed something else which they had not mentioned before. Each time I'd had scans they had done them of my left leg, as the Lymphoma was there. The last time I went in the scanner, it was my whole body - and they noticed something. In my right leg, I also have a lymphoma!!!! So it's in both legs not just the one. However it has responded to the chemotherapy and is shrinking as well. I didn't think to ask if more radiotherapy would be done on the other leg. I'll have to ask next time. So I have TWO LYMPHOMA'S and not just ONE. It sort of threw me a bit and it seems odd that it wasn't picked up before. I will have to mention this to Mr Briggs when I see him in April as well. I'm to have another CT scan of my chest. I suppose it's like last time, that is where tumours start and move to other areas of the body so they want to check it out just in case. I hope it's OK. I'm not sure how much more I can take of being ill. It's never happened to me before, this being ill, and it's been a long time. I just want it to stop for a while and give me a break! |
| 31
MARCH 2003 Dracula (Blood) Clinic, Middlesex |
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Well as you can appreciate after all those needles I am a tad nervous about today. We got there about 11am, you can go at any time, but my brother and Uncle are experts and know the best time to go to avoid all the queues! There were five people ahead of me, not bad. Sometimes it's been about 25!! My number appeared
and I was called. I went in, took off my coat and sat down. "Which
arm is best?" says he. "Take your pick" says I "they
are both as bad as each other!". He said he could see scarring from
a recent few tests and the PICC line I had. However he had straps around
both arms and would try to see what was there. "Ahh" he says. Watch out thinks I! However after a small scatch (which still made me flinch!) he was in and the blood was flowing nicely into two tubes. A success! He was pleased and so was I after past history! So after that, a celebration, a cup of coffee and a biscuit in the Cafe there. The others had more, but I still don't feel like eating much after the weekend pains and things. Oh, I didn't tell you about that did I. My friend collected me on Friday and we went for a drive around the countryside and had a coffee and sarnie whilst out. Well on the way back I had those familiar niggling pains.....oh no. Anyway got home and sat on the sofa. Felt a bit rough but thought it would go away. However it didn't. It got worse. Much worse! I was back on the morphine, being sick, horrendous pain in my back and side again. I slept ALL weekend more or less, apart from when I was being sick of course. It was awful and I was worried. Even now, a week later, I still have the pain in the side but at least can eat small things now. Some things I can't even bear the though of so am eating poached eggs, boiled fish, lots of drink and some fruit. You know me and fruit, can't live without the stuff! Ha ha ha!
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