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| Appointments:
02-Dec-03
| 05-Dec-03 | 11-Dec-03
| 12-Dec-03 | 14-Dec-03
| 16-Dec-03 |
18-Dec-03 | 19-Dec-03 25-Dec-03 | 26-Dec-03 | 31-Dec-03 |
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02 DECEMBER 2003 Tis the season to be jolly...... |
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Who can believe it's December already. It seems ages until it was here and now it's going to start racing on through. I've been taking the painkillers as directed, but boy are they playing havoc with my digestive system (being polite here!). Also I've been getting indigestion, not had that since my chemo days. It's strange to have that back again, I can only assume it's the painkillers doing that. The leg still seems as painful to me though. It's strange that the painkillers don't seem to be working. However I've been told I haven't been swearing at night as much (in my sleep!) so it must be doing something. Either that or I'm getting used to it! LOL! It's getting near to Friday now, so I'm hoping to hear some more good news from this Doc then. It's still painful and the lumps are still there. I wonder what it can be?? Who knows huh.
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05 DECEMBER 2003 Palliative Pain Care Clinic, Middlesex Hospital, London |
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I'm back in London again, this time to see Dr Chris Farnham who is the Palliative Pain Care Specialist. I got there early and read quite a bit of my latest "blood death and killing" book - always go prepared! They all admired my walking stick, which this year has tinsel, baubles and bows on it - so far! Honest, it's not that bad and is quite tasteful really, although Pauline and others suggested I needed lights on it now. My name was then called and it was time to see Dr Farnham. Straight away I got the impression he was a caring person who would listen to what pain I was experiencing. I was right, he listened to me - which made me feel a lot better. It's good that I am being taken seriously and not just "someone who is worrying too much" as I was told before. This pain is real and interfering with my daily life and I need help with it now. He asked about the painkillers I'd been on and I said that they had not done much to help the pain. Although they had given me bad indigestion, something I'd not had since chemo. He said to stop taking them as it wouldn't do me any good. He asked lots of questions, including my family tree. I forgot to mention about Dad when he was in the Forces - some Doctors say it has got something to do with John and I have these diseases but have said that we won't get any medical person to confirm it. We are not after compensation or anything - just acknowledgement that it was the cause of our health problems. Still it sounds like it will never happen. Anyway back to Dr Chris. By this time Jan (Lymphoedema Specialist) had come in. Dr Chris has now prescribed me with morphine tablets (again - although different ones this time). They are continuous ones, by that I mean 12 hourly and taking 2 per day lasting 24 hours. Also I have some other morphine tabs for breakthrough pain. I have taken some of these to help the pain. I've not noticed much difference really so far. The pain that was niggly in both legs has eased a bit though which is good but the pain around the actual lump on my leg hasn't gone away. My leg is still red and swollen and hurts to touch. I've also been getting more pain near the right knee lately, and it's difficult to get in/out of John's car. I'm due to see him again in two weeks, so will see what happens then. I am really pleased that something is being done at last. It's good that someone is taking me seriously about this pain and not dismissing me as a "worrier". I know, Dr C's comments have obviously affected me more than I thought. I still think about it sometimes, but now realise that it is MY RIGHT to ask questions about concerns I have with MY BODY. Other medical specialists have confirmed this for me so I will continue to ask - but maybe not in those appointments. :-( We've put the Christmas Tree up now, it always goes up before my birthday. However it was traumatic for the cats, when we came down in the morning it was across the floor, baubles and tinsel everywhere. We're not sure if it was the cats that did it or if it fell on it's own. However the cats were traumatised and wouldn't go in the same room for ages. Not until they'd had some biccie therapy anyway!
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11 DECEMBER 2003 Happy Birthday to me!!!! (in an MRI scanner, Harley Street, London) |
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First of all I'd like to thank everyone for all the lovely cards, e-cards, pressies, flowers, chocs etc. It really cheered me up before we had to get on our way to London for the MRI scan. I was awake early again today, not sleeping too well due to the soreness of the leg. It makes it difficult to sleep, once in a good position for the leg I try to stay there, but I'm not one for waking in the same position as I went to sleep. I have been known to wake up the wrong way round in the bed and inside the duvet cover, don't ask me how!!! Anyway we got going early but there was SO much traffic, I had a horrible feeling we wouldn't make it in time, but we got there with a minute to spare - just! I pushed the buzzer and was let in. I had to fill in three forms straight away before the scan was to take place. I've filled in loads of them before, and I always smile when I come to the bit when it says "have you had an MRI scan before" - I've lost count now....!!! I was asked to go to the MRI Scanner room and complete the last form afterwards - as long as I had signed the first two consent forms, that was OK and the scan could go ahead. I was asked about the watches and jewellery but said "I don't wear it when I come for a scan, it takes me too long to take it off" which pleased them I think. I had to climb onto the scanner bed and put my leg in a "mould" to hold it in the right place. It had cushioned pads on the side as well. Nice and snug. No blanket this time, but I did have some music playing - Texas Greatest Hits - I love that album - it makes me tap my fingers though and I hoped I didn't move my leg whilst being scanned. I was told first of all a test scan would be done, then the real things, then an injection (which I had forgotten about - ouch!), then more scans.. I had about six done, 1 of 2 minutes, 1 of 5 minutes, 1 of 2 minutes, 1 of 6 minutes, 1 of 2 minutes, 1 of 5 minutes, and then the intercom came on. "I'll have to inject you now". I wasn't looking forward to this. Last time it took a few attempts. I know my veins are bad and she asked which is the best for me, and as usual I said "they're all bad, take your best shot". She looked and wasn't hopeful but tried between the knuckles on the right hand - this seems to be a favourite place with a lot of nurses, my chemo had to go in there sometimes and it hurts! Anyway it didn't work, so next she called in another Nurse and as she arrived she said "I'd like some help with this lady, she has no veins". I know they're bad but I thought I had some there somewhere...!! Next they tried my left wrist, not quite so painful and it looked like it was working, then I heard "no, it's popped" and so that was no good. Then they tried my right inside elbow. It looked like it seemed to be working, then I heard "no, it's tissuing" - so I asked what tissuing was - it's when the injection is going into the surrounding tissue. She said it would sting if it was. I didn't feel any stinging though. She said she'd put in as much as would go in. The needle was then taken out, and she said it would sting a lot, in fact she said "it would be very painful". She said it was better to be honest, and she's right - it hurt like crazy!! I wasn't sure what to do with my arm for a while, and even after I'd left the MRI Centre, it still hurt for quite a while. Not too bad on the bruise front this time though which was good. I was given my scans before I left for Mr B to see. They would fax the report to him tomorrow. So, as it was my BIRTHDAY I was hoping to go somewhere whilst we were in London, like the London Eye for example, but Mum and John weren't keen and it was a rainy day so wouldn't be able to see so much I suppose. I did suggest we go in the Bollinger Bar on Park Lane, but we couldn't find a parking space, what a shame, we could've had quite a time in there!!! We wouldn't be able to walk properly BEFORE we went in there let alone on the way out - LOL! I was disappointed as I wanted to do something special this year, to remember for the future. I don't want to sadden people, but I may not reach the next big birthday number, and wanted to make this one special. It's a realistic part of having this disease not being morbid or anything honest. Anyway we had a lovely meal locally to us, where we could park with ease. It was scrumptious and I normally only have one course, but this time was determined to have a pud as well. In the end Mum and I shared one, but it was enjoyed!! I'm hoping we can do something next week when I'm back in London to see Mr B again. Fingers crossed everyone.....!
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| 12 DECEMBER 2003 |
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Today I would be meeting a Furry Monkey friend, Patrick, who I have been emailing for a long time now. He left a message in my guestbook and we've been emailing since. It turns out he only lives about 20 minutes from me, so suggested we meet for a birthday drink or lunch. He arrived in his fantastic flash car, a BMW. He had some lovely flowers for me, thanks Patrick - for the flowers, the lunch and for meeting you at last. We had a lovely time, comparing our NHL war stories, and also loads of other subjects. We used to work for the same company (in different locations though) a while ago. I hope you enjoyed it as much as I did Patrick, and if you ever want to get rid of your car, I'll be number one in the queue if you'd like to donate it to me! Automatic is so much better for my leg.... :-))) (Big Grin!!!). |
| 14 DECEMBER 2003 |
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Does anyone know anything about hard drives on PC's?? Mine is making weird whirring noises and has even turned itself off with no warning. I've backed up my software and documents just in case. I hope it's not the hard drive. I just CAN'T be without the computer. It's my link to the outside world. I'd be lost without it. If you know about this, or have had a similar problem and may be able to help me, please email me with any information! Perhaps Santa could bring me one for Christmas? I doubt it, but live in hope! I even did the lottery today, which I haven't done for quite a while. We could do with a nice win! |
| 16 DECEMBER 2003 |
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I saw an article in the Lymphoma Newsletter about Cancer Voices User Groups many moons ago and contacted them to find out if there was a local group I could contact to see what they are all about, and possibly join if it seemed useful. After a while I got a reply from them and finally found out that a group was starting up fairly close to me in January and that they were having a social "get together" evening. I asked John if he could take me, it was to be in the evening in a company not far from the hospital. I then had PC probs and didn't know if a reply had come through or not. I assumed it was still on and went anyway. John waited until he was sure it was going ahead. I had to sign in and get a "visitor" badge, it was just like being back at work! I went down the corridor as directed and found this room. There was quite a few people in there, and I knew NO-ONE. A bit scary, but thought seeing as I was there I'd go in. I was introduced to a few people - and we all said we'd forget the names so don't worry about it - and then I was introduced to Angela - a lady I had contact with via email. She recognised the name and said "are you the furry monkey?" - a bit strange but I said "yes, that's me". A good introduction! Anyway everyone was very friendly, I met a guy who used to work at UCH and knew some of the Doctors I know. I mentioned his name when I saw the Lymphoedema Nurse and she remembers him well. It's quite a small circle sometimes and everyone knows everyone else so it seems. They had a game of Pass the Parcel, and I won a Santa hat and a diary and a sweet. The diary will come in very useful later on! Of course I had to wear the hat as well. I was next to the lady who won the actual prize, but she passed them to me - a pair of giant furry slippers with huge claws coming out of the fur! Just my sort of thing. So our next meeting is 24th January in the same place (the company let them use the conference room which is really nice, makes a change from hospitals!). I'm hoping it is going to be good, and they aim to achieve things rather than just be a support group. They did mention another group - a Rare Cancer Group - which may interest me. It does so I'm hoping to meet the lady next time I go as she wasn't at this meeting. All in all a thoroughly good night and I'm looking forward to the next meeting.
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| 18 DECEMBER 2003 |
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Time to see Mr Briggs. An early start as usual to get into "the big smoke". There was LOADS of traffic, more than usual and it took us 35 minutes plus just to get on the slip road to the M4! We finally got there though, and for once there was a space just around the corner to park (very unusual) so John took it, and I had a slow walk to Mr Briggs office. A short wait, and my name was called. My walking stick was admired, apart from tinsel and a couple of baubles it now has a snowman that lights up. It's not tacky, just three tiny lights but looks good as it gets darker. He was impressed with it. I gave him my scans and he put them on the "light box thingy" and showed me where the tumour was (it will always show as abnormal - so no obvious worries there). He said it was all looking good and clear, the tumour was regressing which is good news, so I am on the right track. It's a close eye on me time though, and if anything appears I'm worried about I'm to call him straight away. He asked about my website and when I told him how many hits I'd had, he was very impressed with it and wanted to know more about it. I really think he needs a website there, I could be the perfect person to do it for him as well. He went outside his consulting room and said to Mum "She's had nearly 50,000+ hits on her site, isn't that amazing." I'm to see him at the begining of February to check how things are going, and also to have another MRI scan in March. I hope they don't have to inject me for that one. I'm hoping to compare those with the original scans from when I was diagnosed so that I can see the difference in the tumour for myself. |
| 19 DECEMBER 2003 |
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Back to the PPC Doc. He liked the walking stick, and was amused at the lights on it. I said I'd achieved the challenge set by Pauline, who unfortunately wasn't there to see it. I'll have to take a photo for her instead. Anyway we went into the consulting room and he asked how things had been going. Although some of the niggly pains had eased, the main pain from the area around the lump are still there and extremely painful. He put his hands around the leg and it felt warm but not too bad I think! It's like a band has been tied around it and left a big gouge in it. Very odd. He said how did the painkillers go and I said they'd given me indigestion, so he said to stop taking them straight away. No point giving me other problems. I was then asked to continue taking the morphine (both lots) and that he would prescribe a new tablet. It's used for epileptics as he thinks it is the radiotherapy that has caused nerve damage. I'm to start taking one per day and in a schedule he has given me I end up taking 9 tablets per day. The side effects are dizziness and sleepiness. By taking it gradually it shouldn't be too bad though, fingers crossed. I need to go back in three weeks time for another appointment, before this he will be writing to Dr C to ask about the tumour in my other leg (I asked about what would be happening, as nothing had happened since they found it after the MRI got both legs in the scanner). It seems strange to just leave it. He said I need to know answers to my questions and would put them in writing to get them. He also suggested looking on the internet for some other things I mentioned. A totally different approach than Dr C there obviously. He makes me feel that I can ask anything, just like I felt with Charlie. It makes it better for me when I feel at ease with the Doctor. I also mentioned about my toe (he'd said previously to mention if anything changes with my toes/feet as the Lymphoedema could cause things, as Jan has mentioned before). He had a look, just as there was a knock on the door and a lady walked in. It made us both laugh as it was so odd with him at my feet! He said there is something there but to just keep an eye on it, and if it gets worse to call him. I have his number I can call anytime which makes me feel better. In fact I called him as I've been itching like crazy and wondered if it was a side effect. It could be the morphine, as that made me itch before. They had to give me tablets to stop it now I come to think of it. However I've to stop taking the morphine for one day and call him tomorrow with any changes. So far the pain is worse and the itching is the same! Not a lot of change there. **
PC UPDATE ** Nick (my lifesaver!) diagnosed a fan problem on the graphics card. I tried to get a replacement and couldn't find one anywhere, getting desperate again, I went to PC World as a last resort and was told "I've not seen one of those before, where is it from?" Strange thing is, it was from one of their own PC's!!!! Anyway, he found an article on the internet on how to solve this problem and it's now running perfectly! Oh how I missed that cyber world! Glad to be back again with you all. |
| 25 DECEMBER 2003 |
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HAPPY CHRISTMAS EVERYONE!! My best wishes to you and yours for a wonderful Christmas and an even better New Year for us all. Heaven knows we deserve it! Enjoy! I had a lovely phone call from John and Brenda in Oz this morning, their Christmas Day was almost over. We had a long chat and it was good to finally hear his voice after emailing all this time to each other. Thanks John - it was a lovely Christmas Pressie to speak to you and Brenda. |
| 26 DECEMBER 2003 |
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Guess what. I've got the dreaded lurgy.....urrghhhh! Feel awful, sore throat, headache, aching bones, sore everything - makes the pain in the leg not quite so bad now with all the other pains I've got instead. Dizzy and tired all the time. Just want to sleep...zzzzz..zzz.....zzzzzz.....zzzzzz Hot lemon and a nice warm duvet for me. Shame there's nothing good on TV I could watch. I've not seen any TV over Christmas yet. Give it a go and see how long it is before I fall asleep....again.....zzz...zzzz..zzzzzzz |
| 31 DECEMBER 2003 |
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I'm feeling a little better, thank heavens not as bad as last year when I was on morphine over the New Year. At least it's just a lurgy this time and nothing more serious...... all that remains is for me to say: I had a phone call from Dr C. She phoned after receiving the letter from Dr F which he wrote after our last meeting. After asking about my family history and my treatment to date, we were both concerned about a couple of things, one of them being the tumour in my right leg and that nothing had been said about it since they found it "by accident" whilst having an MRI scan on the left leg. Again I felt
like a naughty schoolkid being told off. She said "will you ever
stop worrying about your health?". Surely it is better to question
things, others have told me to never stop asking questions - it's my body,
my right and I will continue. However as I said last time, I'll just ask
someone else. It's a real shame I am made to feel like this when I am
only asking. Would they just sit there and not ask questions - I think
NOT!!! Other Doctors have said it's about time I had some support post-chemo when they have emailed me. They're not wrong there. From my personal point of view, it seems they are only interested in you when you are undergoing chemotherapy/radiotherapy and that the damage caused by these treatments does not appear to be of their concern once the treatment is finished. This is NOT the way to treat patients. I am trying to deal with these side effects on a daily basis and it feels like they don't want to know about it. Perhaps if I'd been listened to before I wouldn't be in this pain now and have these problems which could've been easier to solve if something had been done earlier. Who can blame me for feeling like this?! I remember when all this pain started, the Doctor at the time said "go to the chemist and get some painkillers". As much use as a chocolate teapot! I only go to the Doctors when there is something wrong with me, I'm not a hypochondriac. Perhaps this is why so many don't bother going to their Doctors anymore - it's like trying to contact the Police, you know there's no point as nothing will be done so why bother?! How many times have you heard people say that? Mind you perhaps that is why so many people die needlessly. They don't want to "bother the Doctor" about something. Or perhaps they too have been made to feel stupid and don't ask questions when they should do. Who knows huh? Anyway enough of that - I'm not going to let it get to me this time - it's not worth it. It's off my chest now and forgotten about. I will try these different drugs and hope that one of them works. Then I can get my Lymphoedema treated. At least some people are listening to me and not making me feel like an idiot. HAPPY
NEW YEAR to each and every one of you!!! |
