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| Appointments: | 05-Sep-02 | 06-Sep-02 | 11-Sep-02 | 13-Sep-02 | 18-Sep-02 | 25-Sep-02 | 26-Sep-02 | 27-Sep-02 |
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SEPTEMBER 2002 Park Street, London - Mr Briggs |
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Back to Mr Briggs. At least I know there are no needles involved here. Makes a change! He said "You're looking good kiddo, keep it up!" which is nice to hear. I had a couple of x-rays done, and he said my leg is not looking so moth-eaten now!! I think that's a medical term!! ;-) The other pains I've been having in my shin bone and other parts of my leg are to do with the chemo, it's doing it's stuff and moving around. He still wants me to walk with the frame and put no more than 5 stone on the bad leg. I never put much weight on it, so that's good - I was hoping he might say I could stop using the frame, but no such luck for me. I have to give the leg as good a chance to recover, with no risk of breaking it. I didn't realise quite how weak it was. He said my hair was coming out, how did I feel. He knew I wasn't keen on it but I have no choice. It kills the cancer, but also kills the good cells at the same time. I said I was getting used to it, but it feels weird. I showed him my alternative plan, a baseball cap with long black (synthetic) hair sewn round the edge! He liked it and tried it on. With his tan, it looked quite good! I have to go back in eight weeks time, 5th November. I had the same dream again last night, in which my stepdad (we called him Dad as my Dad died when I was four and my brother six months old) was sitting on the bed, holding my head for me as it hurt so much. It's so real it's amazing. He knew what it was like and maybe he's trying to help me, who knows? Sometimes you just want someone to put their arms round you and hug you, I feel like I just want to cry sometimes, not be so brave all the time. |
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SEPTEMBER 2002 Home, District Nurse Visit |
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Jane, the District Nurse, came to change the dressing on the PICC and flush it through. This has to be done every week. She said it is looking a little bit red, if it gets worse to call her over the weekend as she is on call. Or else visit St Peters Hospital instead. After our experience at Ashford I think it's better all round! I hope it doesn't get any worse, or else they will have to take it out. Keep your fingers crossed for me all of you! I want this to stay in now!!! My fingers are worse again today. It's really awkward. I sent poor Lisa an empty email this morning! I really hope it's not permanent, along with chemobrain, I can't remember a thing. I used to have such a good memory, now I ask the same question twice in the space of 10 minutes!
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SEPTEMBER 2002 Chemotherapy Suite, Foley Street |
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Well it's 9/11 day and where am I? In the middle of London that's where. Not the best place with all the talk of terrorist activity. Still, no point in moping about it, I hardly think they'll bomb a Chemotherapy Suite in London. Well I'm hoping they don't!! I can hear the service on the TV from my Day Care Room 2 in the Chemo Suite. It's a very moving time. I remember being there last year at KP when it happened. One very scary time. Anyway I've had the dressing changed on my PICC line. A little bit red but nothing too drastic to worry about. Unlike the saga of the A&E visit which I relayed to Rebecca and HO Albert. Not impressed. I can't remember the correct word for the attack but it IS dangerous and you can DIE from it. Not a nice thought. It was horrendous at the time. I have received one reply to my letters, from Ashford A&E saying a thorough investigation will take place in the next 20 days and I will be fully informed of what happened. I must admit to being nervous at the weekend, specially when we went to the shop where I first started to feel ill last time. Phew - I was OK this time! Back to Chemo, it didn't arrive until 3pm so they had to arrange a budget code to get a car to take me and Mum home. It was touch and go whether she would be able to come as the car only had enough room really for four people but we squeezed five in! I was examined and went through the standard Q&A sessions with House Officer Albert. This is the same everytime to check my side effects. Then the chemo was put through the PICC line. Only just over two hours this time, a record so far!! No needles either - bliss!!! I was also shown how to remove the tegaderm (plaster like stuff holding the PICC line in) from my arm without taking ALL my skin off. I have sensitive skin which reacts quite badly. It is still coming off in places like sunburn but at least it doesn't hurt so much the way they showed me. I have to be a trainer now and pass this info on to Jane on Wednesday. |
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SEPTEMBER 2002 Wheelchair Assessment - St Peter's Hospital, Chertsey |
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Another busy day, this time to St Peters Hospital, Chertsey for my wheelchair assessment. I have to be assessed to see if I require a wheelchair. This should be quite easy as I can only walk with a frame! I had to answer more questions and then, ta-da (fanfare of trumpets!) I was allocated a wheelchair there and then. Bright snazzy one with a red and chrome frame! My favourite colour!! I had to sign a form saying I'd do all sorts of things to look after it and care for it. We had to wait for transport to take us and the new toy back home! |
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SEPTEMBER 2002 Home |
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At 8.30am this morning an ambulance with two Surrey Ambulance Personnel turned up to take me to UCH for chemo. I "was" supposed to have gone on a Friday as normal, but it was changed after I spent three days in Whitbread Ward having the Hickman/PICC line done. I don't know if it's an admin error or a communication error, but it happened. They said it was OK - it happens. THEN the Wheelchair Man turned up, all wheelchairs have to have lap belts fitted now for health and safety. John said great, if you fall out you'll end up flat on your face with the wheelchair on top of you! Nice huh! THEN Jane turned up with a trainee to review my PICC line as the nurse requested it be checked over as the skin was red. It was checked and is fine, just got to keep an eye on it. THEN my aunt and uncle came around to see us. They are jetting off to the US for a month and wanted to see us before they went. It was good to see them as with such a busy schedule lately I hadn't seen them for a while!! It's all go here this morning, the curtains are a twitching in the neighbourhood - I bet they all wonder what is going on here!! |
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SEPTEMBER 2002 Home |
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Time is flying by. I had a phone call this morning about my next chemo session. Dr Cassoni insists I have a review. I did tell them I went to the Radiotherapy Clinic before but was told there was no appointment and was directed to the Chemo Suite. Still next time it'll be a review first which is what I've had all along. A good time to ask questions and talk about things that are worrying me. Also my next chemo session is back to a Friday, 4th October is my next important date. Chemo number five already!! The next thing is radiotherapy, I've already got my three planning sessions made to go to the "Mould Room" not - not as it sounds, it's to take a mould of my leg ready for the radiotherapy zapping. I'll also have my tattoo, I wonder if I could make it into something else later on as the stars do?!?!?!? Jane came with today with Judy. They liked my nails last time, as most of you know until recently I had always had short (read chewed!) nails. Now they are so long I have to keep cutting them down! Never thought I'd ever do that in my lifetime! Last time they came they were magenta colour with slight silver flecks and silver tips like a french manicure. Sounds weird but they looked nice...honest!! Everyone has commented on them so far with favourable results! My PICC line is doing fine, I was worried it was a bit red with yellowy stuff around it, but Jane said it's OK and not too inflamed. It gets in the way sometimes and I'm scared of accidentally puling it out somehow. I keep an elasticated bandage on it. I feel like I could do with a break away from everything at the moment. Lots of people are either going away or just coming back and I can't remember the last time I had a holiday......not much chance of that happening at the moment is there. |
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SEPTEMBER 2002 Home |
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Jane and Judy came again to flush the PICC line as normal. It's hard trying to put the statlock (a little lock that keeps the line in the arm in the right place and doesn't escape!) on as my skin is suffering quite badly at times. Rebecca at UCH said to take a swab of the gunky stuff that is near the entry point and send it away for investigation. However upon taking the dressing off most of it disappeared so there was not enough to take a swab of it. Check it next time if it comes back. The actual entry point doesn't look quite so red now which is good. Flushed and dressed as usual - next time it's blood to be taken and reflushed. |
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SEPTEMBER 2002 Home |
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Apologies for the delay in updating the diary this time, but I need to scream......Arrghhh!! I was getting pain in my back again but hoped it would go away. John was going on holiday today and I didn't want him not to go because of me. I tried to brave it out and went to bed to see if it would help. It didn't!!!! I'd already taken 2 painkillers and also took one of the other painkillers which Charlie had prescribed for my head/neck/shoulder/arm pains when they are here. Both didn't even touch the pain at all. I was in absolute agony again, just lying there on the bed, arms over my head and crying in pain. Mum called the hospital and they said if we could get up there, a bed was available for me. This was really difficult, as if an ambulance was called it would take me to the nearest hospital (Ashford) and NOT to UCH. The Doctor at UCH said they couldn't get an ambulance to me. That infamous circle..... apart from going to hospital, they suggested getting a Doctor out who would help me. This Mum did, however he didn't come from the Egham area, or even near, he had come from Hillingdon!! Anyway I don't remember much from there on. Apparently he examined my leg and had a conversation with Mum about my treatment so far. He said it sounded chemo related but everyone reacts in a different way so they can't plan for it. He gave me a shot of morphine and this eased the pain and I was asleep in a matter of minutes. The relief from the pain was fantastic. I hope it doesn't happen again, I've got two more chemos left. I'll ask my consultant when I see her next week to check if we can head the pain off by taking something. I've been prescribed liquid morphine as well, I hope it's quick working that's all I can say. I remember Dad taking this stuff, it's vile.....and gives you other side effects too. Lovely huh!! |
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SEPTEMBER 2002 Home |
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Slept most of the day, so tired and still had back ache. Not the extreme pain as before but it ached something chronic. I took more painkillers. It eased it a bit and enabled me to sleep. So tired...... |
