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| Appointments: 05-Nov-03 | 13-Nov-03 | 21-Nov-03 | 27-Nov-03 |
| 05
NOVEMBER 2003 Home |
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What's going on in the world of Karen then? Well, I've spoken to Mr Briggs sec, Janice, and the other appts made for me at Bolsover Street and Stanmore have been cancelled. I tried to call them myself but would you believe it, the telephone number printed on ALL the appt cards for the hospital is a FAX number. Not much good really when no alternatives are on there! Anyway, I've also now got my MRI scan date, and would you believe it, it's on my birthday!! Last year I was in a Linac machine having radiotherapy, this year I will be inside an MRI scanner. I wonder if they could put "Happy Birthday" on the CD player?!?!? I am still in the same pain as I was before, perhaps more so in the right leg too. I've also still got the lumps on my leg. I'm sure that the one at the lower end of the leg is getting bigger. I am keeping a close eye on it and if the pain keeps increasing then I am going to contact Mr Briggs as he told me to. It's bad enough without having the extra pain. I've asked if I can have a longer appt next time to ask my now growing list of questions (thanks everyone for your suggestions - all have been noted and will be asked hopefully!). I really do NEED some answers to them. I've never had a Macmillan Nurse or other support that I can check with so it's been difficult, and I want to get things right in my head about it. My next appt with Dr Cassoni is on 21/11 - perhaps I can ask some questions there too. I've been adding a few things to the website, which you may notice. Also a few subtle changes here and there. A webmasters life is always changing! Well until the next time, sleep tight! |
| 13
NOVEMBER 2003 Home |
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It seems a long wait until my appointment with Dr Cassoni. I've been feeling quite anxious and lost, I didn't get much information about my post-radiotherapy from Mr Briggs, and NEED to know more. There could be other things that could help me with the pain and swelling. I had a "funny turn" as my Mum calls it today. We had to get some food as our fridge was absolutely bare. I just got into the shop when I felt awful, all clammy and "weird". I had a really bad headache, every bone ached actually. My throat hurts again, my ears hurt, everything hurt. Mum asked if I was OK as I'd gone a funny colour. I just felt awful. I feel a little better now but still my throat, head and leg hurts. I don't think the anxiousness helps. I really need to find out what is going on. It could just be a mass of cells building up after radiotherapy? Who knows. If it is I was wondering if it could be cut out? Or zapped with radiotherapy? My list of questions is ever growing. Thanks everyone for all your helpful emails which have made me more determined to ask what is going on. If I knew what was happening I'd probably feel better in myself. At the moment I'm in limbo (again!) and as someone said to me today, you're in the same position almost as last year. She is right but it made me feel worse. The pain is bad, stops me from sleeping and is worrying me. Hopefully after my appointment next week I will have some answers and feel better. When I know more, I'll let you all know. Take care until then...... |
| 21
NOVEMBER 2003 UCH, Lymphoma Clinic |
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It's arrived. My day to ask my questions and hopefully find out what is going on with these lumps. The transport arrived, we had seven patients to pick up, three down and then three to go after me. It turned out after all that only five patients would be going to London this time, we had one not needed and one who didn't want to go. One patient we collected was a retired Police Inspector at Scotland Yard. He had lots of interesting tales to tell, and the others were a good bunch too so we had a lively chat on the way there. Traffic wasn't too bad, although there was a heavy police presence at the Airport and parts of London as we went past due to George Dubya. Sadly no police escort to the hospital! Once in the Clinic it was a busy time, standing room only. It was the busiest I'd seen it for a long time. Then my name was called. I was examined. I explained about my leg, it was VERY painful when examined. However the reply about this didn't help much. "I've not seen one quite like this before, (it's like a band around your leg) and can only assume it is from the radiotherapy (comments about the shape of my legs were included) do you have an appointment with the Lymphoedema Clinic?" I have one already so am hoping to find out more from Jan. I asked about why the lump wasn't biopsied and was told that the lumps are never biopsied as it can introduce infection. That makes sense. I asked about anything I can do to help the pain as I am unable to sleep and am getting extremely tired, but there is nothing. I was asked about my questions. They had been building up for a long time so there was quite a few. She answered them, but I got the impression that she didn't like it that I was checking out new treatments and information on the internet (official sites only, no quack ones), she told me not to get too involved or worried about it. If it comes back, it comes back she said. I check things out for me and also to put things on my website. After all it is ME who has the cancer, and I want to know what new treatments are being developed. I get a lot of messages saying my website has helped others so assumed it was all for the good. Do I come across as some internet idiot who believes everything it says? I hope not. It's made me feel awful. Surely most people want to know about the disease and what can be done to help? I'm still in pain with the lumps so it was a bit dis-heartening to be honest. Did you want to find out things too or am I really just the odd one out who wants to know these things?? It has made me scared of asking questions in the future now. I don't think it's good to just bottle things up and never ask questions. Are we supposed to just do as told and not ask. Mr Briggs said I was a sensible girl and that I would know when something is not right. This lump hurts, makes daily life and sleeping difficult and I would like some help with it. Even if I get told, well you've got to learn to live with it, then at least I would know wouldn't I. A good friend has co-incidentally emailed me before I'd even uploaded this page to say he had problems when asking questions in hospitals and was seen as "effrontery". There are lots of thoughts on this. I am NOT some obsessed idiot, just someone who is concerned about their own health and future and wants to have answers to questions. Counselling was also mentioned, the question was written when I was at a low time, I don't think I need counselling - just help with dealing with the pain I get all the time. I normally do get on with things but thought I'd ask if there was anything that could help, I'll just go back to getting on with it myself and not ask again. Before my appointment started I gave her the cross stitch picture I'd done for her to say thanks. She didn't have time to open it, so I hope she liked it. Anyway onto brighter things now. Christmas is getting nearer and I need to get things moving. Apparently there are a lot of bargains out there if the papers are to be believed. Now how much of a reduction can I get on an Aston Martin do you think?? :-)))))) Just thought I should add that I've now had lots of emails saying that it is RIGHT to ask questions, it is my cancer, my body, and my right to ask about it. Lots of people have found that they are described as "awkward" or "difficult" just because they ask questions. I'm not so deflated now, more annoyed. Why should I be made to feel in the wrong just because I want to know answers about what is happening to me and what could improve things for us all in the future with this disease. Keep smiling, keep fighting and keep asking I've been told.....!!! |
| 27
NOVEMBER 2003 UCH, Lymphoedema Clinic |
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Another day another appointment. This time the Lymphoedema Clinic with Jan. I was nervous and apprehensive about this appointment. Was it going to be a waste of time like my previous one - who knows. Whilst waiting to see Jan, I heard my name and looked up and there was Sally, my first chemo nurse and also Liz Simcock, the PICC Queen! They asked how I was doing and I said not too bad, and mentioned the pain and swelling and they said "there's a Pain Clinic here, you should go to it, you shouldn't be in pain". There is light at the end of the tunnel......! I'm pleased to say it was not a waste of time. I came out of there on cloud nine. Jan listened to my problems with the pain and sleeping difficulties. I was given some new tenoshape thingies (official medical term LOL!!) which are a LOT stronger than the other one I had been wearing. It is taking some getting used to. I was also prescribed two lots of painkillers and also some new cream to try. I hope it's easier to use as I can't bear to put the other cream on now as it's so painful. Jan had the results of my blood tests, she said some of them are low but not dangerously so. The others are all within the "normal" range. Yes - I'm normal on some things popular to contrary belief! I've now been referred to a Palliative Pain Care Doctor, Chris Farnham, and will be seeing him on Friday. Jan said until the pain eases they won't be able to give me any treatment for the Lymphoedema. This makes sense as I can't bear anyone to touch my leg at the moment. Hopefully the painkillers should work and then we can get something sorted. I'm also going to have some physio, Jan said she's not sure how it will work or if it will work, but it's worth a try. I agree there and am willing to give it a go. It's brilliant that someone is listening to me, and I feel miles BETTER because something is being DONE at last. I've had this pain for ages and it's wearing me down. I'm so tired and although I try to stay positive and upbeat it's not always that easy. To be honest, after my last appointment I felt totally deflated and depressed. She really upset me and made me feel like an idiot. It's easy for a Doctor to say these things but they really should think how the comments will be received by the patient before saying them, it can set you back for ages. It might sound minor to them but to us it could be a big deal. I was anxious about the pain and worried I admit, a normal reaction in the circumstances and that just made me feel so bad for quite a while. Two totally different appointments, two different medical people, one made me feel crap, the other like I'd won the lottery. Shows how the way you are treated really does affect the patient. Still onwards and upwards, after seeing Jan and knowing that things are now moving made me feel relieved. A huge weight has been lifted from my shoulders and it's great to feel like this again. From one depressed person to one happy person, all in the space of a week!!
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