As I'm sure you'll read and see on Chris' blog, we've been away to Mum and Dad's house in Cornwall. They were on holiday, so we had the house to ourselves. It was nice to get away and have a change of scenery. The weather was mainly crap, but we managed to get out most days. I got to see the sea, which I love - huge waves! We had pasties and a cream tea (well, we were in Cornwall!). The latter of which we had after a long walk and me being desperate for the loo (what do you mean using the loo was just an excuse??!!). We bought a Crime Scene board game (we Tinsley's know how to live!) and played that once we'd got the UV light to work properly (used to examine the fingerprints and blood splatters!), I won of course.......should've chosen a different path......!
I decided to go commando (no hat) whilst we were on our walk. The thing is, when you look in the mirror you think wow, that's growing nicely. However, if you have a husband like Chris, lots of photos are taken.......and then you look at the photos and think, oh dear, maybe it wasn't such a good idea after all!
It was just Chris, me and the boys that went. Livi decided she wouldn't like the things we wanted to do and anyway she could work more hours during the half term week. This is the first time we've left her at home on her own. Well I say on her own, but it seems she had friends stay over most nights. No beds were used - they all kipped on the sofas! The house was in one piece though when we came home and tidy (thanks to one of Livi's friends who actually likes tidying up!).
I went into work yesterday and saw a few people whilst Liv had an appointment. I needed to organise another chat to finalise when I'm going back to work - I think it's time. Hopefully that'll be next week - the chat that is. I just have to sort out a couple of things before I go back.
Anyway, finally - the results are in!
What a palaver getting them though. I rang the oncologist's secretary on Friday - no reply, but left a message telling them what I was after and leaving my number. Heard nothing that day, gave them the benefit of the doubt and waited until Tuesday to ring again. I managed to speak to someone, who told me she couldn't give me the results over the phone, she'd have to fax them to my GP and then I'd have to ring them and get the results that way. But first, she had to check the results were in, so she'd ring me back. About an hour later, she rang back to tell me, yes, the results were back and she'd faxed them to my GP. So, I duly rang the GP surgery only to be told that they hadn't received the fax and someone would ring me back later when they had received it.
More waiting.........Just after lunch, I had a call from my oncologist, Dr Newman, to tell me the results. He said they'd only just been received that day. Anyway, back to the results...........drum roll, please...............he said....................da dada da da daaaaaa..............ALL WAS FINE!! Nothing showed up on the scan at all, everything looked clear. Oh. My. God. Naturally, I thanked him and promptly burst into tears. Just then, the phone rang again and it was my GP to tell me that they still hadn't received the fax. I told her the news and ordered some more medication while I was at it. Crying continued for a while, in fact it didn't seem to want to stop! Of course, it had to though, as I had to pick the boys up from school and anyone who has seen me cry even just a little bit, will know what a complete mess I end up looking. Why was I crying anyway, I'd just had some really good news? I didn't realise how much the scan had affected me. It didn't seem to have preyed on my mind but I guess, subconsciously, it had. I have to say though, I haven't felt such a sense of relief since this whole sorry mess started. I actually feel strangely positive now (ooer, better not change the habit of a lifetime too quickly!). I know there might be some of the little buggers still lingering in cells waiting to pounce, but as my BFF, Susie, said that could be true for any one of us - none of us really know what's going on inside. Having this CT scan result has been a huge step forward for me psychologically. As the other Auntie Rita said - it's time to step out of the cancer bubble and enjoy life.
I spoke to Auntie M, who's just come out of hospital after an op. She sounded brilliant, much better than she's sounded for ages - so we were both congratulating each other. It's about time we had a run of good news. Long may it continue!
Wednesday, 2 March 2011
Thursday, 17 February 2011
Life after hospital
Well I certainly haven't missed my daily trips to the hospital. I have been kept busy though, which is good as it's getting me back into circulation.
Last week I went round to a friend's house for lunch. We had a good natter (well, she listened to my ramblings mainly) and I ended up picking the boys up late! It's really nice to get out of the house.
I also went to the dentist. Remember back in November when my tooth cracked? I finally went to get it sorted. I explained the situation to a very nice lady who I've not seen before. She put a temporary filling in and told me to make a longer appointment for a permanent one. Next available appointment was 22nd March (and I thought GP surgeries were bad)! Naturally the filling had come out by the end of the next day. Ah well, I've managed this far - as long as I don't have any problems, I'll wait.
On Friday, I had an appointment with Irene, my breast care nurse. I haven't seen her for about 6 months, so it was nice to catch up. We talked about all sorts - gene testing, breast reconstruction (could be a major op, so some serious thinking to be done there), permanent prosthesis and of course my feelings and how I'm coping with everything. Irene says it's still early days and I'm doing fine!
The weekend was punctuated with 6 nations rugby on TV and wandering around outdoor clothing shops looking for a 3 in 1 coat for me (can't get the ones I want as they don't do tent size!).
My darling husband surprised me by taking the day off on Monday, Valentine's Day. I don't think he thought our evening with the CT scanner was romantic enough (can't think why). So, we tootled off to Cirencester. I managed to get a 3 in 1 jacket and we had a superb lunch at Made by Bob - all in all a successful day. We got home after picking the kids up and thought we'd have a bit of time relaxing before going to hospital. I took a quick peek at the letter, just to double check the time (19:00). It was a good job I did, as it stated that I should be there 45 minutes before the appointment, so I could drink some liquid! Oh, bugger - we had to get our skates on then!
When we got there, the waiting room was packed. Most people were drinking a coloured liquid and recording it on a piece of paper. I got given a jug of water and told to drink it within the next 45 minutes. Easy really, as I was thirsty. I was able to go to the loo if I needed it, which was reassuring - but I didn't.
When it was my turn, I was called in by a lady who had hair missing on the top of her head but plenty round the sides. She's an attractive lady and obviously very confident in her own skin. I did wonder why I couldn't be like that. I guess with me though, I still look like a cancer patient and I don't want to any more. Anyway, back to the scan.....I've never seen a CT scanner before and didn't know what to expect. It's not a tunnel (that's an MRI scanner), but a large ring with an inner that spins round. As I wasn't wearing an underwired bra, I didn't have to get undressed, but I did have to pull my jeans down (metal zip) to my thighs (mmm......flattering!). I had to lie on a couch and then they told me I'd have to have some dye injected into my veins. Oh. My. God. Would she find any that were any good? Well, as it happened, no - great. A doctor had to be called to see if he could do any better. He poked and prodded and told me that if he couldn't find any in the arm, he'd have to go in the front of the wrist and that would be painful - nice. Luckily he he found one and put the cannula in my arm. He gave me 2 flushes though just to make sure - I didn't feel the first one, but the second one gave me the familiar sensation of something trickling up my arm. The dye had to be put in slowly because of the small veins, but that was ok, at least it was going in. Now, the strange thing about this dye is the side effects. I was told that I'd have a hot flush - I'm getting used to those now, so that wasn't too bad. However, once this dye courses through your body, you get the feeling that you're wetting yourself! "Don't worry" said the radiographer, "you won't be". I wouldn't be too sure of that, I thought, I've just had a jugful of water!!
Arms above the head and I started to move through the hole. There's a recorded voice that tells you to take a deep breath and hold. Once you've passed through the hole and back again it tells you that you can breathe again. Once it had scanned my chest, abdomen and pelvis, I was sent to wait outside for 10 minutes while they checked it had worked ok and that I was feeling fine. Once the cannula had been removed, we were free to go. I forgot to ask when the results would be available and they didn't tell me. If I don't hear anything after a week, I'll give the oncologist's secretary a call and see if she can find out for me.
On Tuesday, I went for lunch with Susie B. The weather wasn't brilliant (good test for my jacket), but we walked to the next village (about a mile), had a lovely lunch and a nice long chat before walking back. Once I'd picked the kids up from school and college, I got home and was knackered. The last 2 days had caught up with me. An early night and a good sleep beckoned. They may have beckoned, but they didn't deliver! Chris had been roped into ferrying Livi and a friend to a Valentine's party at college. She assured us that she had a lift back at midnight, so we went to bed and zonked. 00:10 and the phone went - "my lift's not turned up, can you pick us up and take Hannah back home too?". My poor man got up, dressed and dutifully pootled off. Finally, when he arrived back at 01:00, we went to sleep!
Yesterday, I met up with Gaynor to discuss work and the options open to me when I feel ready to return. My sick note doesn't finish until the end of March, but I'm hoping to return before then. The last few days have made me realise though just how tired I can get. I was texting Jemma the other day and she was also saying how quickly she gets tired. I think I'm fine one minute and then the next I suddenly hit a wall. I've promised to meet up with Jem for coffee after the half term and before I go back to work so we can compare hair growth! Talking of which, routine maintenance has had to be resumed - hair growing all over the place (was nice while it lasted)!!
Chris is working from home today, so I've taken advantage and am having a lazy day. I thought it was time to put fingers to keyboard and update everyone, so here I am........
Last week I went round to a friend's house for lunch. We had a good natter (well, she listened to my ramblings mainly) and I ended up picking the boys up late! It's really nice to get out of the house.
I also went to the dentist. Remember back in November when my tooth cracked? I finally went to get it sorted. I explained the situation to a very nice lady who I've not seen before. She put a temporary filling in and told me to make a longer appointment for a permanent one. Next available appointment was 22nd March (and I thought GP surgeries were bad)! Naturally the filling had come out by the end of the next day. Ah well, I've managed this far - as long as I don't have any problems, I'll wait.
On Friday, I had an appointment with Irene, my breast care nurse. I haven't seen her for about 6 months, so it was nice to catch up. We talked about all sorts - gene testing, breast reconstruction (could be a major op, so some serious thinking to be done there), permanent prosthesis and of course my feelings and how I'm coping with everything. Irene says it's still early days and I'm doing fine!
The weekend was punctuated with 6 nations rugby on TV and wandering around outdoor clothing shops looking for a 3 in 1 coat for me (can't get the ones I want as they don't do tent size!).
My darling husband surprised me by taking the day off on Monday, Valentine's Day. I don't think he thought our evening with the CT scanner was romantic enough (can't think why). So, we tootled off to Cirencester. I managed to get a 3 in 1 jacket and we had a superb lunch at Made by Bob - all in all a successful day. We got home after picking the kids up and thought we'd have a bit of time relaxing before going to hospital. I took a quick peek at the letter, just to double check the time (19:00). It was a good job I did, as it stated that I should be there 45 minutes before the appointment, so I could drink some liquid! Oh, bugger - we had to get our skates on then!
When we got there, the waiting room was packed. Most people were drinking a coloured liquid and recording it on a piece of paper. I got given a jug of water and told to drink it within the next 45 minutes. Easy really, as I was thirsty. I was able to go to the loo if I needed it, which was reassuring - but I didn't.
When it was my turn, I was called in by a lady who had hair missing on the top of her head but plenty round the sides. She's an attractive lady and obviously very confident in her own skin. I did wonder why I couldn't be like that. I guess with me though, I still look like a cancer patient and I don't want to any more. Anyway, back to the scan.....I've never seen a CT scanner before and didn't know what to expect. It's not a tunnel (that's an MRI scanner), but a large ring with an inner that spins round. As I wasn't wearing an underwired bra, I didn't have to get undressed, but I did have to pull my jeans down (metal zip) to my thighs (mmm......flattering!). I had to lie on a couch and then they told me I'd have to have some dye injected into my veins. Oh. My. God. Would she find any that were any good? Well, as it happened, no - great. A doctor had to be called to see if he could do any better. He poked and prodded and told me that if he couldn't find any in the arm, he'd have to go in the front of the wrist and that would be painful - nice. Luckily he he found one and put the cannula in my arm. He gave me 2 flushes though just to make sure - I didn't feel the first one, but the second one gave me the familiar sensation of something trickling up my arm. The dye had to be put in slowly because of the small veins, but that was ok, at least it was going in. Now, the strange thing about this dye is the side effects. I was told that I'd have a hot flush - I'm getting used to those now, so that wasn't too bad. However, once this dye courses through your body, you get the feeling that you're wetting yourself! "Don't worry" said the radiographer, "you won't be". I wouldn't be too sure of that, I thought, I've just had a jugful of water!!
Arms above the head and I started to move through the hole. There's a recorded voice that tells you to take a deep breath and hold. Once you've passed through the hole and back again it tells you that you can breathe again. Once it had scanned my chest, abdomen and pelvis, I was sent to wait outside for 10 minutes while they checked it had worked ok and that I was feeling fine. Once the cannula had been removed, we were free to go. I forgot to ask when the results would be available and they didn't tell me. If I don't hear anything after a week, I'll give the oncologist's secretary a call and see if she can find out for me.
On Tuesday, I went for lunch with Susie B. The weather wasn't brilliant (good test for my jacket), but we walked to the next village (about a mile), had a lovely lunch and a nice long chat before walking back. Once I'd picked the kids up from school and college, I got home and was knackered. The last 2 days had caught up with me. An early night and a good sleep beckoned. They may have beckoned, but they didn't deliver! Chris had been roped into ferrying Livi and a friend to a Valentine's party at college. She assured us that she had a lift back at midnight, so we went to bed and zonked. 00:10 and the phone went - "my lift's not turned up, can you pick us up and take Hannah back home too?". My poor man got up, dressed and dutifully pootled off. Finally, when he arrived back at 01:00, we went to sleep!
Yesterday, I met up with Gaynor to discuss work and the options open to me when I feel ready to return. My sick note doesn't finish until the end of March, but I'm hoping to return before then. The last few days have made me realise though just how tired I can get. I was texting Jemma the other day and she was also saying how quickly she gets tired. I think I'm fine one minute and then the next I suddenly hit a wall. I've promised to meet up with Jem for coffee after the half term and before I go back to work so we can compare hair growth! Talking of which, routine maintenance has had to be resumed - hair growing all over the place (was nice while it lasted)!!
Chris is working from home today, so I've taken advantage and am having a lazy day. I thought it was time to put fingers to keyboard and update everyone, so here I am........
Thursday, 3 February 2011
Is that it?
Well, my last 3 went pretty smoothly (not counting the waiting times!). I met up with Gemma for the last time on Monday. She was due to have another Herceptin infusion on the Tuesday, so her radiotherapy time (her last 1!) was brought forward to the morning. We swapped mobile numbers and have decided to keep in touch and let each other know how we're getting on.
Tuesday afternoon, I picked Vaughan up and he was suddenly full of a cold - red eyed, with a banging headache. That came on quick. Paracetamol didn't help much, so he didn't go to rugby training. Then, when Livi came back home after an evening driving around, she was in a state - shivery, aching and with a banging headache. Both didn't sleep well, so it looked like my last day of radiotherapy would be with them both at home.
Livi was due to work, so I asked Chris to wake me up just in case I needed to give her a lift in. He duly did as he was told, informed me that Livi wasn't going to work, but that I needed to get up as he was taking me for breakfast! He'd taken the day off work for my last session (maybe he really does love me after all!).
We left Vaughan and Livi in bed, walked into town and had a lovely breakfast. I popped into the pharmacy to get my outstanding Clexane injections, did a few errands and then we were off on our last trip to the hospital for a while. Not too long a wait and then I was in. The radiographer asked if I'd got a bottle of champagne on ice and told me to lie back and enjoy the last one! Strange really, but I've been quite happy to lie still and just let them get on with it, but this time I felt fidgety and couldn't wait to get off the table. I had to make an appointment with the oncologist for a follow up (4th April) and then it was time to go. How did I feel? Quite teary really - not sure why, probably relief that my hospital treatment thus far is finally at an end. Of course, I still have my Valentine's date with the CT scanner to look forward to (will I feel any easier when this has been done?). On our way back, we'd reached a junction on a hill, when Chris said "bloody hell, look at that!". I hadn't a clue what he was talking about, until I saw a Chinook helicopter straight ahead of us, woah! It flew low overhead and continued over the valley - very impressive! So, that was quite a nice end to my radiotherapy (maybe it was ordered specially!).
Oh yes, I rang the oncologist's secretary on Monday to find out about the Clexane (how much longer and what dose). She told me that Dr Newman was on annual leave, so she'd ask another doctor to find out and get back to me. Monday turned into Tuesday and Tuesday turned into Wednesday. I rang her back. Could I remind her what it was about as she had a terrible memory?!! She vaguely recalled handing it over to a junior doctor, so she'd have to chase him. Had I not rung back, I would never have found out (does she not keep a note of any outstanding queries? Our secretaries do!). Anyway, the upshot is, I can stop the Clexane. I guess I have to keep an eye out for blood clots - like everyone else does, I suppose. It'll be nice not having my bloody phone reminder keep going off every day!
My first "free" day wasn't so good. Vaughan was back at school but I took Livi to the doctors (thanks Rob) - temperature, sore throat, big tonsils. She ended up on antibiotics, had a throat swab (she keeps getting these sore throats) and some bloods taken to rule out glandular fever . She felt much better, other than her sore throat and wanted to go to college, so that's where we went next.
I was home long enough to have a cuppa and something to eat and then I had to go and pick Adam up from school (Vaughan had a school rugby match). Home for half an hour and then it was time to go and pick Livi up. That's when the nightmare started. There are numerous roadworks at the moment and we got stuck in them. With those, dropping her off at a friends house and picking Vaughan up from rugby, I was sat in the car for about 2 and half hours! Everything was getting on my nerves (nearly running out of diesel; the car up my bumper; another one that overtook in a village and then got stuck in front of me in a queue (ha! and he had a dangerously positioned canoe on his roof!)) so, by the time I got home, I was in a foul mood (sorry Chris).
Anyway, tomorrow's another day and I have coffee with H and Jess to look forward to......
One last thing, my friend posted this on her blog and I think it's brill!
http://reasonstostaypositive.blogspot.com/2011/01/up-yours-to-breast-cancer.html
Tuesday afternoon, I picked Vaughan up and he was suddenly full of a cold - red eyed, with a banging headache. That came on quick. Paracetamol didn't help much, so he didn't go to rugby training. Then, when Livi came back home after an evening driving around, she was in a state - shivery, aching and with a banging headache. Both didn't sleep well, so it looked like my last day of radiotherapy would be with them both at home.
Livi was due to work, so I asked Chris to wake me up just in case I needed to give her a lift in. He duly did as he was told, informed me that Livi wasn't going to work, but that I needed to get up as he was taking me for breakfast! He'd taken the day off work for my last session (maybe he really does love me after all!).
We left Vaughan and Livi in bed, walked into town and had a lovely breakfast. I popped into the pharmacy to get my outstanding Clexane injections, did a few errands and then we were off on our last trip to the hospital for a while. Not too long a wait and then I was in. The radiographer asked if I'd got a bottle of champagne on ice and told me to lie back and enjoy the last one! Strange really, but I've been quite happy to lie still and just let them get on with it, but this time I felt fidgety and couldn't wait to get off the table. I had to make an appointment with the oncologist for a follow up (4th April) and then it was time to go. How did I feel? Quite teary really - not sure why, probably relief that my hospital treatment thus far is finally at an end. Of course, I still have my Valentine's date with the CT scanner to look forward to (will I feel any easier when this has been done?). On our way back, we'd reached a junction on a hill, when Chris said "bloody hell, look at that!". I hadn't a clue what he was talking about, until I saw a Chinook helicopter straight ahead of us, woah! It flew low overhead and continued over the valley - very impressive! So, that was quite a nice end to my radiotherapy (maybe it was ordered specially!).
Oh yes, I rang the oncologist's secretary on Monday to find out about the Clexane (how much longer and what dose). She told me that Dr Newman was on annual leave, so she'd ask another doctor to find out and get back to me. Monday turned into Tuesday and Tuesday turned into Wednesday. I rang her back. Could I remind her what it was about as she had a terrible memory?!! She vaguely recalled handing it over to a junior doctor, so she'd have to chase him. Had I not rung back, I would never have found out (does she not keep a note of any outstanding queries? Our secretaries do!). Anyway, the upshot is, I can stop the Clexane. I guess I have to keep an eye out for blood clots - like everyone else does, I suppose. It'll be nice not having my bloody phone reminder keep going off every day!
My first "free" day wasn't so good. Vaughan was back at school but I took Livi to the doctors (thanks Rob) - temperature, sore throat, big tonsils. She ended up on antibiotics, had a throat swab (she keeps getting these sore throats) and some bloods taken to rule out glandular fever . She felt much better, other than her sore throat and wanted to go to college, so that's where we went next.
I was home long enough to have a cuppa and something to eat and then I had to go and pick Adam up from school (Vaughan had a school rugby match). Home for half an hour and then it was time to go and pick Livi up. That's when the nightmare started. There are numerous roadworks at the moment and we got stuck in them. With those, dropping her off at a friends house and picking Vaughan up from rugby, I was sat in the car for about 2 and half hours! Everything was getting on my nerves (nearly running out of diesel; the car up my bumper; another one that overtook in a village and then got stuck in front of me in a queue (ha! and he had a dangerously positioned canoe on his roof!)) so, by the time I got home, I was in a foul mood (sorry Chris).
Anyway, tomorrow's another day and I have coffee with H and Jess to look forward to......
One last thing, my friend posted this on her blog and I think it's brill!
http://reasonstostaypositive.blogspot.com/2011/01/up-yours-to-breast-cancer.html
Saturday, 29 January 2011
Only 3 more left!
The lack of confidence took another bashing this week. My late appointment for radiotherapy was incredibly late as the other machine had broken down! This meant there was plenty of time to talk to the other patients. Oh dear. There were 2 ladies there that were a lot more experienced than me. 1 lady had been in the same situation 15 months earlier - only 15 months breathing space and bang it's back again, this time on her spine! I'm not sure what her original diagnosis was.
The other lady had been to see her consultant for an annual check (diagnosed with breast cancer originally) only to be told it had come back near her collar bone. 4 years she'd been free of it. They couldn't operate - too near her jugular - so she had chemo (lost her hair again) and now radiotherapy. Her oncologist thought that maybe the hormone treatment had stopped working, so she's on a different 1 now. She was originally on Tamoxifen, but was taken off that when she had reconstructive surgery (risk of blood clots). Then she was put on Arimidex and it was whilst she was on this that the b*st*rd came back. Both said it was worse being told second time around.
I sat there in stunned silence just listening to them. I managed to keep it together during treatment and back to the car, but then I cried all the way home (not good in the dark and the rain!). Part of me thought, what's the point - it's going to come back. Nobody knows if the treatment is working or is going to continue to work. That was the paranoid, half empty Tracey. The sensible, half full Tracey knows that a) it may not be the same for me, b) don't I at least have to try for my friends and family and c) I can't do anything about it anyway - que sera, sera. It didn't stop the tears though and me sobbing my heart out first to Chris and then on the phone to my Mum. I felt better afterwards - I think the tears were overdue.
On Tuesday, I popped into work. Liv had an appointment, so I took the chance to say a quick hello to a few people (fab looking secretaries office - well done girls!). There were lots of hugs and people telling me how good I looked (mmmm.....still not convinced on that one!).
Radiotherapy at 13:00 was ultra quick, so I had chance to get something for tea before picking the boys up.
Then it was an eye test for the boys and new specs for Vaughan (wonder if he'll wear this pair??!). So all in all a busy day for me!
On Wednesday morning, I had the pleasure of going to the lymphoedema clinic to be measured for a compression sleeve. As Miriam (my lymphoedema nurse) didn't have 1 long enough, she said she'd post it out to me. I should aim to wear it for about half a day to begin with. Well, it arrived yesterday. I washed it and am now sat wearing a rather fetching, skin coloured, full arm with fingerless glove (well it has a thumb cover) compression sleeve! Woohoo :( No, you guessed right, I don't like it!
Went to see my GP on Wednesday evening, as I was running out of Clexane injections. She wasn't too keen on prescribing more as they cost £111 for a box of 10. Unfortunately the oncologist's letters weren't very clear as to how long I should stay on the Clexane for (and apparently I'm on a high dose). I explained that he was happy for me to go onto Tamoxifen whilst I was taking the Clexane and that he planned to review me 3 months from December. So, the upshot is that she gave me a script for 10, which gives me enough time to ring Dr Newman's secretary and find out how long he wants me to stay on it and at what dose. Rushed to the nearest chemist as it was nearly closing time (she'd kept me waiting for nearly an hour) only to find that they didn't have any in stock. So, I ran back to the car and sped round to the pharmacy at work and they did have some, but only 7, so I have to go back and get my other 3.
Can't cope with all these busy days!
My bff (best friend forever according to my facebook sources!), Susie B, took me for my Thursday radiotherapy appointment. Poor Susie, they were running over an hour and half late! So she sat and sat and sat and had to listen to me and Gemma gabbling away and then she had to wait some more while I went for treatment! We did go for a coffee after though, which made up for it a bit.
As of today, I have 3 more sessions to go. Hard to believe that all the big treatments are nearly over. I'm not quite sure how that'll affect me yet. Think I need a bit of time to reflect and get my head into a more positive frame of mind for the future. I also need to talk to Irene, my breast care nurse, about gene testing, the implications of it and if Livi can have regular screening (and a few other things I'm sure!). Anyway I think I've had this sleeve on for long enough now......time to go!
The other lady had been to see her consultant for an annual check (diagnosed with breast cancer originally) only to be told it had come back near her collar bone. 4 years she'd been free of it. They couldn't operate - too near her jugular - so she had chemo (lost her hair again) and now radiotherapy. Her oncologist thought that maybe the hormone treatment had stopped working, so she's on a different 1 now. She was originally on Tamoxifen, but was taken off that when she had reconstructive surgery (risk of blood clots). Then she was put on Arimidex and it was whilst she was on this that the b*st*rd came back. Both said it was worse being told second time around.
I sat there in stunned silence just listening to them. I managed to keep it together during treatment and back to the car, but then I cried all the way home (not good in the dark and the rain!). Part of me thought, what's the point - it's going to come back. Nobody knows if the treatment is working or is going to continue to work. That was the paranoid, half empty Tracey. The sensible, half full Tracey knows that a) it may not be the same for me, b) don't I at least have to try for my friends and family and c) I can't do anything about it anyway - que sera, sera. It didn't stop the tears though and me sobbing my heart out first to Chris and then on the phone to my Mum. I felt better afterwards - I think the tears were overdue.
On Tuesday, I popped into work. Liv had an appointment, so I took the chance to say a quick hello to a few people (fab looking secretaries office - well done girls!). There were lots of hugs and people telling me how good I looked (mmmm.....still not convinced on that one!).
Radiotherapy at 13:00 was ultra quick, so I had chance to get something for tea before picking the boys up.
Then it was an eye test for the boys and new specs for Vaughan (wonder if he'll wear this pair??!). So all in all a busy day for me!
On Wednesday morning, I had the pleasure of going to the lymphoedema clinic to be measured for a compression sleeve. As Miriam (my lymphoedema nurse) didn't have 1 long enough, she said she'd post it out to me. I should aim to wear it for about half a day to begin with. Well, it arrived yesterday. I washed it and am now sat wearing a rather fetching, skin coloured, full arm with fingerless glove (well it has a thumb cover) compression sleeve! Woohoo :( No, you guessed right, I don't like it!
Went to see my GP on Wednesday evening, as I was running out of Clexane injections. She wasn't too keen on prescribing more as they cost £111 for a box of 10. Unfortunately the oncologist's letters weren't very clear as to how long I should stay on the Clexane for (and apparently I'm on a high dose). I explained that he was happy for me to go onto Tamoxifen whilst I was taking the Clexane and that he planned to review me 3 months from December. So, the upshot is that she gave me a script for 10, which gives me enough time to ring Dr Newman's secretary and find out how long he wants me to stay on it and at what dose. Rushed to the nearest chemist as it was nearly closing time (she'd kept me waiting for nearly an hour) only to find that they didn't have any in stock. So, I ran back to the car and sped round to the pharmacy at work and they did have some, but only 7, so I have to go back and get my other 3.
Can't cope with all these busy days!
My bff (best friend forever according to my facebook sources!), Susie B, took me for my Thursday radiotherapy appointment. Poor Susie, they were running over an hour and half late! So she sat and sat and sat and had to listen to me and Gemma gabbling away and then she had to wait some more while I went for treatment! We did go for a coffee after though, which made up for it a bit.
As of today, I have 3 more sessions to go. Hard to believe that all the big treatments are nearly over. I'm not quite sure how that'll affect me yet. Think I need a bit of time to reflect and get my head into a more positive frame of mind for the future. I also need to talk to Irene, my breast care nurse, about gene testing, the implications of it and if Livi can have regular screening (and a few other things I'm sure!). Anyway I think I've had this sleeve on for long enough now......time to go!
Sunday, 23 January 2011
11 down 9 to go
It would have read 12 down 8 to go, but the machine broke down on Friday, so I have to have that one tagged on to the end of the treatment. I should now finish on Wednesday 3rd February (all being well and the machine not breaking down again).
So, instead of going to hospital on Friday, I went for a walk with Susie B (well done for dragging me out!) and ended up at a pub in the next village. It was a freezing walk back, but it blew a few cobwebs away and I really enjoyed it. As we only had drinks (just coffee!), we've planned lunch in Feb - when I've finished the radiotherapy and she's got a free day from her new job!
I hope the taste and nausea side effects from the Tamoxifen have subsided by then!
Yesterday, we dragged the boys out to Stourhead for a walk around the lake. Livi wasn't working, but didn't want to come with us - something that I found upsetting, but hey what can I do? We had a lovely walk and it lifted my mood somewhat. I'm getting a bit fed up with the tiredness, sensitive chest area and the aforementioned taste and side effects (probably just need a good cry and then I'll be better!).
Today, Chris and I went out on our own for a walk. He's not feeling 100% either, so it was only a quick one, but it was good to get out again.
Tomorrow's radiotherapy appointment has been moved to 15:50 from the usual 13:00. Chris will pick the boys up and I probably won't see my new pals! I've had a nice couple of chats with Gemma again and also met Sheila. Sheila was diagnosed with cancer 5 years ago, had surgery and radiotherapy and was put on Arimidex, but during routine checks, it was found to have returned. She's back on radiotherapy and now on Tamoxifen. The fact that Arimidex didn't work doesn't fill me with confidence, but as I keep learning with this thing, everybody is different. I also met a new lady (didn't get round to names) who was on her second radiotherapy session. This was a morning I was asked to go in early as the machine was being serviced (apparently this is the only machine that delivers the higher dose I need), so I may not see her again. It wasn't until the conversation got round to hair loss that I realised she was wearing a wig! Best wig I've seen (should be really, it cost over £500). Another young one - she's 39 with 3 children (b*st*rd cancer!).
On a positive note, I've got an appointment on Wednesday at the lymphoedema clinic. It's at a community hospital 14 miles away. They used to do it at the local community hospital just round the corner but, cutbacks..........So, I have that at 10:00 and depending on what time I come out, I may have to go straight to Bath for radiotherapy. I may go straight there anyway - it hardly seems worth coming home. I'll just have a longer wait.
My hair is slowly growing. The boys like to brush it with the baby brush my Mum bought me (I'm sure that novelty will wear off!). I'm not ready to go without my hat in public though - I still look like a cancer patient. It can't grow back quick enough (even if it is grey!). The same with my eyelashes - they're definitely sprouting, but they're not long enough for mascara yet. I'm not allowed to shave under the affected arm or wear deodorant during treatment, but I am under the other arm. Thought it best to do that one last week - give the radiotherapy staff a treat! As it's getting more uncomfortable now wearing a bra, I've taken to just wearing Frances. This can get a bit embarrassing at times. I've been wearing black cotton tops, so when I take them off, Frances looks like she's been dragged through a hedge backwards! God knows what they're all thinking. Hey ho!
So, instead of going to hospital on Friday, I went for a walk with Susie B (well done for dragging me out!) and ended up at a pub in the next village. It was a freezing walk back, but it blew a few cobwebs away and I really enjoyed it. As we only had drinks (just coffee!), we've planned lunch in Feb - when I've finished the radiotherapy and she's got a free day from her new job!
I hope the taste and nausea side effects from the Tamoxifen have subsided by then!
Yesterday, we dragged the boys out to Stourhead for a walk around the lake. Livi wasn't working, but didn't want to come with us - something that I found upsetting, but hey what can I do? We had a lovely walk and it lifted my mood somewhat. I'm getting a bit fed up with the tiredness, sensitive chest area and the aforementioned taste and side effects (probably just need a good cry and then I'll be better!).
Today, Chris and I went out on our own for a walk. He's not feeling 100% either, so it was only a quick one, but it was good to get out again.
Tomorrow's radiotherapy appointment has been moved to 15:50 from the usual 13:00. Chris will pick the boys up and I probably won't see my new pals! I've had a nice couple of chats with Gemma again and also met Sheila. Sheila was diagnosed with cancer 5 years ago, had surgery and radiotherapy and was put on Arimidex, but during routine checks, it was found to have returned. She's back on radiotherapy and now on Tamoxifen. The fact that Arimidex didn't work doesn't fill me with confidence, but as I keep learning with this thing, everybody is different. I also met a new lady (didn't get round to names) who was on her second radiotherapy session. This was a morning I was asked to go in early as the machine was being serviced (apparently this is the only machine that delivers the higher dose I need), so I may not see her again. It wasn't until the conversation got round to hair loss that I realised she was wearing a wig! Best wig I've seen (should be really, it cost over £500). Another young one - she's 39 with 3 children (b*st*rd cancer!).
On a positive note, I've got an appointment on Wednesday at the lymphoedema clinic. It's at a community hospital 14 miles away. They used to do it at the local community hospital just round the corner but, cutbacks..........So, I have that at 10:00 and depending on what time I come out, I may have to go straight to Bath for radiotherapy. I may go straight there anyway - it hardly seems worth coming home. I'll just have a longer wait.
My hair is slowly growing. The boys like to brush it with the baby brush my Mum bought me (I'm sure that novelty will wear off!). I'm not ready to go without my hat in public though - I still look like a cancer patient. It can't grow back quick enough (even if it is grey!). The same with my eyelashes - they're definitely sprouting, but they're not long enough for mascara yet. I'm not allowed to shave under the affected arm or wear deodorant during treatment, but I am under the other arm. Thought it best to do that one last week - give the radiotherapy staff a treat! As it's getting more uncomfortable now wearing a bra, I've taken to just wearing Frances. This can get a bit embarrassing at times. I've been wearing black cotton tops, so when I take them off, Frances looks like she's been dragged through a hedge backwards! God knows what they're all thinking. Hey ho!
Saturday, 15 January 2011
Radiotherapy update
As of yesterday, I have had 8 sessions - so nearly halfway there. The first 3 took longer as there were images to take. Since then though, it has taken roughly 10 minutes to position and treat and about 30 minutes to wait for my turn. Radiotherapy patients seem to be more chatty and you get to see familiar faces as you get called through to the second waiting area. Unfortunately you don't get to see the same staff. A week and a half into my treatment and I'm still seeing new faces coming in to treat me (treat sounds like I have something lovely waiting for me every time I go in - believe me, I don't!).
This is something I was discussing with a fellow rads patient (new friend!). Her name is Gemma and she's 28 - breast cancer but not as invasive as mine. Sad thing is I consider myself to be nearer her age than that of the other rads patients - reality is probably very different! We had a really good chat yesterday and are at similar stages in treatment (she's 1 ahead of me). She's also on Herceptin (which I don't have to have), given intravenously, and has a Hickman line still fitted. Hope to see her again next week for another chat. 28, it's no age is it? Neither is 31 or 12 - two local lads who died last week of cancer. If I feel cheated, how did they feel, or how do their families feel now? I hate cancer.
The Tamoxifen is giving me a crap taste in my mouth and making me feel a bit nauseous at times (thought I was done with all that!). Hopefully, it's just while my body adjusts to it as I may be on it for 5 years!!
I'm feeling a bit tired, but think that's dependent on what I'm doing. Thursday was a long day - met up with Gaynor in the morning, then rads, then pick all the kids up, then Lynne (friend from work) round early evening - I was falling asleep soon after tea! Most days, though, I leave at 12:00 and don't get chance to relax properly until 17:00, when I've arrived back home, having picked all the kids up. So, I take advantage and don't do anything in the mornings, bit self indulgent really! Thursday was exceptional - in more ways than 1! Gaynor picked me up and parked in a pay and display car park. I got the ticket and forgot to look at the expiry time. Needless to say time flew, we went over and came back to a bloody parking ticket! Then, when I got home, I realised that Livi had waltzed off with the car keys and I had no way of getting to the hospital! I had to ring Chris, who came home from work with his keys! Naturally I was late and had to ring the department to let them know. In the end it was only half an hour and I didn't have to wait long before going in. Stress or what??!!
The areas on my body they treat are starting to look a bit red now and also a bit puffy. Yesterday, I mentioned that my right arm was looking a bit swollen and had a chat to one of the radiotherapy team who knows about lymphoedema. She gave me some more exercises to do and is referring me to the lymphoedema clinic - that compression sleeve is getting closer and closer! I also had to have bloods taken yesterday (words such as pin and cushion immediately sprang to mind!) but hey presto, the HCA got it first time, didn't hurt me and I've not bruised - result!
Other than that, I just go in, strip off, lay on the slab and don't move until they've done what they need to do. It's a walk in the park compared to chemo!
This is something I was discussing with a fellow rads patient (new friend!). Her name is Gemma and she's 28 - breast cancer but not as invasive as mine. Sad thing is I consider myself to be nearer her age than that of the other rads patients - reality is probably very different! We had a really good chat yesterday and are at similar stages in treatment (she's 1 ahead of me). She's also on Herceptin (which I don't have to have), given intravenously, and has a Hickman line still fitted. Hope to see her again next week for another chat. 28, it's no age is it? Neither is 31 or 12 - two local lads who died last week of cancer. If I feel cheated, how did they feel, or how do their families feel now? I hate cancer.
The Tamoxifen is giving me a crap taste in my mouth and making me feel a bit nauseous at times (thought I was done with all that!). Hopefully, it's just while my body adjusts to it as I may be on it for 5 years!!
I'm feeling a bit tired, but think that's dependent on what I'm doing. Thursday was a long day - met up with Gaynor in the morning, then rads, then pick all the kids up, then Lynne (friend from work) round early evening - I was falling asleep soon after tea! Most days, though, I leave at 12:00 and don't get chance to relax properly until 17:00, when I've arrived back home, having picked all the kids up. So, I take advantage and don't do anything in the mornings, bit self indulgent really! Thursday was exceptional - in more ways than 1! Gaynor picked me up and parked in a pay and display car park. I got the ticket and forgot to look at the expiry time. Needless to say time flew, we went over and came back to a bloody parking ticket! Then, when I got home, I realised that Livi had waltzed off with the car keys and I had no way of getting to the hospital! I had to ring Chris, who came home from work with his keys! Naturally I was late and had to ring the department to let them know. In the end it was only half an hour and I didn't have to wait long before going in. Stress or what??!!
The areas on my body they treat are starting to look a bit red now and also a bit puffy. Yesterday, I mentioned that my right arm was looking a bit swollen and had a chat to one of the radiotherapy team who knows about lymphoedema. She gave me some more exercises to do and is referring me to the lymphoedema clinic - that compression sleeve is getting closer and closer! I also had to have bloods taken yesterday (words such as pin and cushion immediately sprang to mind!) but hey presto, the HCA got it first time, didn't hurt me and I've not bruised - result!
Other than that, I just go in, strip off, lay on the slab and don't move until they've done what they need to do. It's a walk in the park compared to chemo!
Wednesday, 5 January 2011
Radiotherapy #1
Chris took the day off so he could take me to my first session (after that, I'm on my own!).
We had a lazy morning and then set off around 13:00 for a 14:00 appointment. We sat and waited for about 40 minutes, before a young girl came round to collect me. She is a student called Jodie, very young and fresh faced (made me feel old!), but very nice. We went into the radiotherapy department and an office, where she checked my date of birth and address (you'd think after repeating this so many times over the last few months I would remember it!) and told me what was going to happen and what I should do to minimise side effects.
Then she directed me to the "waiting room" and informed me that for future appointments I would be called over the intercom and should then come and wait here. Now, this "waiting room" has been temporarily sited in an office, whilst they refurbish the department, so there's a desk (complete with computer), a couch, sink, cupboards and 5 chairs that look like they've been chucked in there for storage. No matter, the signs ask us to be patient with them and we will. There were 2 other ladies in there, one waiting for her treatment and the other waiting for her mother.
After about 20 minutes, I was called in. It's a bigger room than the simulator room and not as welcoming. There's no door, it's just round a corner at the end of a corridor - a little unnerving whilst you're stripping off to the waist!
Then it was on to the familiar couch - bottom here, legs here, arms above my head. Above me, instead of the normal ceiling tiles, there were tiles that made up a spring scene of a flowering blossom tree.
More positioning, more measuring and more pen marks followed and a rather fetching gel pad was left on my chest. This is to make sure the skin around the scar gets a dose of radiation as well as deeper into the chest wall. I'll have this for half of my treatment and then the other half without it. Then they left me. Apparently they were taking more pictures and then there was about a minute of treatment. First on my chest, then under my arm and then near my collar bone. I had to turn my head to the side for this last one, so that I wouldn't get a sore throat if they accidentally treated that (mmm.....that's reassuring!).
I kept wondering if I'd feel anything whilst they were zapping me, but I didn't. It was only the noise of the machine and the red lights that popped on declaring RADIATION that gave any indication that they were treating me.
Then it was over. I put my top etc. back on, was given some Aqueous Cream to put on twice daily and went back out to meet Chris. My bad arm (the one with the pins in it) was feeling a bit stiff and I have to watch out for lymphoedema now, but I put that down to the position it was in during treatment (they tell you to relax, but quite honestly, would you?).
So that's 1 down, 19 to go.............
We had a lazy morning and then set off around 13:00 for a 14:00 appointment. We sat and waited for about 40 minutes, before a young girl came round to collect me. She is a student called Jodie, very young and fresh faced (made me feel old!), but very nice. We went into the radiotherapy department and an office, where she checked my date of birth and address (you'd think after repeating this so many times over the last few months I would remember it!) and told me what was going to happen and what I should do to minimise side effects.
Then she directed me to the "waiting room" and informed me that for future appointments I would be called over the intercom and should then come and wait here. Now, this "waiting room" has been temporarily sited in an office, whilst they refurbish the department, so there's a desk (complete with computer), a couch, sink, cupboards and 5 chairs that look like they've been chucked in there for storage. No matter, the signs ask us to be patient with them and we will. There were 2 other ladies in there, one waiting for her treatment and the other waiting for her mother.
After about 20 minutes, I was called in. It's a bigger room than the simulator room and not as welcoming. There's no door, it's just round a corner at the end of a corridor - a little unnerving whilst you're stripping off to the waist!
Then it was on to the familiar couch - bottom here, legs here, arms above my head. Above me, instead of the normal ceiling tiles, there were tiles that made up a spring scene of a flowering blossom tree.
More positioning, more measuring and more pen marks followed and a rather fetching gel pad was left on my chest. This is to make sure the skin around the scar gets a dose of radiation as well as deeper into the chest wall. I'll have this for half of my treatment and then the other half without it. Then they left me. Apparently they were taking more pictures and then there was about a minute of treatment. First on my chest, then under my arm and then near my collar bone. I had to turn my head to the side for this last one, so that I wouldn't get a sore throat if they accidentally treated that (mmm.....that's reassuring!).
I kept wondering if I'd feel anything whilst they were zapping me, but I didn't. It was only the noise of the machine and the red lights that popped on declaring RADIATION that gave any indication that they were treating me.
Then it was over. I put my top etc. back on, was given some Aqueous Cream to put on twice daily and went back out to meet Chris. My bad arm (the one with the pins in it) was feeling a bit stiff and I have to watch out for lymphoedema now, but I put that down to the position it was in during treatment (they tell you to relax, but quite honestly, would you?).
So that's 1 down, 19 to go.............
What 2011 already??? Where did 2010 go?
Forgot to mention our Good Samaritan deed on the 28th December. Mr Tins and I were on our way back from B&Q after unsuccessfully trying to source a new flush for the upstairs toilet (which one of the kids had broken!) when, driving through the town centre, we passed an elderly gent who, before our eyes, collapsed in a heap on the floor. After pulling over, I got out and ascertained (i.e. he told me!) that he suffered from Parkinsons and he just couldn't get his legs to move at the same time as his body did. He'd hurt his shoulder and I was worried it was broken or dislocated, but he assured me it wasn't and that he didn't need an ambulance. He'd cut his hand and was obviously very shaken up by the fall. Chris got out, helped him up and we slowly walked him to the car and gave him a lift home. He lived on his own, so we went in with him. After making sure his hand was cleaned up, we made him a hot drink and waited with him until his carer turned up. Whilst we were there, Mr Tins, desperate to make conversation, kept commenting on the gadgets he had in his flat (his PC, the Bang & Olufsen sound system, his artwork). To be honest it sounded like he was casing out the joint!
Friday, I met H and walked into town, where she treated me to a coffee and cake. Baby Jess was fascinated by H's cake. Each time she lifted the fork to her mouth, Jess couldn't take her eyes off it. She's obviously eager to get stuck into solid food!
New Year's Eve was a quiet affair for us, made even more so by the fact that we only had one child at home with us. Vaughan stayed the night at a friend's and Livi was out with her friends. We passed the time playing cards, at which I won not a single game (I'm still the undisputed champion with the highest score at ten pin bowling on the Wii, though!!). Just before midnight, we went round to our next door neighbour's to watch their fireworks (some of which were excellent). We weren't going to stay long but they opened the bottle of wine we took round and as Chris was unable to say no to subsequent glasses, we were there for an hour!
New Year's Day was even quieter! Everyone was tired after staying up late the night before. Livi missed a Skype chat with Mum, Dad, Auntie Rita and Uncle Brent, because she went to bed at 20:00 (heavy night followed by an early McDonald's breakfast)! It was nice chatting to them and even nicer seeing them.
Yesterday, Leigh from work came for coffee. It was a "special" birthday for her at the weekend and she had a do on the Sunday. Although invited, we didn't make it in the end (some things are a bit scary at the moment). It was nice to hear all about it though - and she brought some birthday cake for all of us!
So, 2011 already. I know everyone probably feels like 2010 passed in the blink of an eye, but I really feel I've missed it completely. I've lived in my cancer bubble since June and before that I was busy with my course. At this moment in time, 2011 seems a bit daunting. I still have radiotherapy to get through and hormone treatment to start, a scan to look forward to, the "what if's"..... There's going back to work, a prospect that's both exciting and nerve racking at the same time and the hope of getting back to normality (what's that???). At the end of the day, though, I can only deal with one day at a time and that's what I shall do!
Friday, I met H and walked into town, where she treated me to a coffee and cake. Baby Jess was fascinated by H's cake. Each time she lifted the fork to her mouth, Jess couldn't take her eyes off it. She's obviously eager to get stuck into solid food!
New Year's Eve was a quiet affair for us, made even more so by the fact that we only had one child at home with us. Vaughan stayed the night at a friend's and Livi was out with her friends. We passed the time playing cards, at which I won not a single game (I'm still the undisputed champion with the highest score at ten pin bowling on the Wii, though!!). Just before midnight, we went round to our next door neighbour's to watch their fireworks (some of which were excellent). We weren't going to stay long but they opened the bottle of wine we took round and as Chris was unable to say no to subsequent glasses, we were there for an hour!
New Year's Day was even quieter! Everyone was tired after staying up late the night before. Livi missed a Skype chat with Mum, Dad, Auntie Rita and Uncle Brent, because she went to bed at 20:00 (heavy night followed by an early McDonald's breakfast)! It was nice chatting to them and even nicer seeing them.
Yesterday, Leigh from work came for coffee. It was a "special" birthday for her at the weekend and she had a do on the Sunday. Although invited, we didn't make it in the end (some things are a bit scary at the moment). It was nice to hear all about it though - and she brought some birthday cake for all of us!
So, 2011 already. I know everyone probably feels like 2010 passed in the blink of an eye, but I really feel I've missed it completely. I've lived in my cancer bubble since June and before that I was busy with my course. At this moment in time, 2011 seems a bit daunting. I still have radiotherapy to get through and hormone treatment to start, a scan to look forward to, the "what if's"..... There's going back to work, a prospect that's both exciting and nerve racking at the same time and the hope of getting back to normality (what's that???). At the end of the day, though, I can only deal with one day at a time and that's what I shall do!
Sunday, 26 December 2010
I had my radiotherapy planning session on Tuesday. That was a novel experience! I was in there for around 45 minutes. I was shown into the "simulator" room, had to sign a couple of consent forms, had a quick chat with my Oncologist (who suddenly appeared, like Mr Benn, from behind a door) and then it all began.
The Oncologist wanted to discuss my hormone treatment. There are 2 drugs I could go on - Tamoxifen or Arimidex. Arimidex is generally only prescribed for postmenopausal women and I'm not quite there yet! However, Tamoxifen can cause blood clots and I have been there! So, this is what the discussion centred around. I could go on Arimidex if I have regular injections of a drug called Zoladex. Not knowing much about any of them, I told Dr Newman I would be guided by him. It was eventually decided that I would go onto Tamoxifen for the next 3 months, whilst I'm still on the Clexane injections and then we'll review the situation after that. The Clexane will lessen the chance of a blood clot, but of course when I come off that, I will be at risk again - hence the review.
Once that was out of the way, I stripped off the top half and positioned myself on the couch - bum and legs had to be in a certain position. Then I was measured, drawn on and had this machine and green laser beam circling above and below me. They took x-rays (to make sure they miss vital organs!) and then I got what felt like 3 tattoos, although I can only find 2 now. They're only the size of a full stop, but it's so they can find the same place each time I have treatment. That was it - off we toddled.
The next few days were spent with Chris telling me we had to get a move on and get all the food and me spent telling him we had loads of time, so stop panicking! Just to shut him up, we went shopping. He compromised and we went in the evening, so I didn't have to mingle with all the germs and bugs.
It seemed ages for Friday to arrive and PICC line removal. I was glad when it finally did come around. My arm had been looking red around the entry site since Wednesday, but by Thursday it had calmed down a bit. However, by Thursday evening and Friday morning it had returned and looked quite angry. So was I to be honest, I wasn't sure that they'd take it out if there were signs of an infection.
We were tended by a nurse I hadn't met before and she didn't seem too concerned by the redness, although she took swabs. Her theory was that my arm was just so fed up with it, it wanted the line out. She told me what she was going to do and that it wouldn't hurt. She lied. It did hurt. I even muttered an ooooh! while I was supposed to be holding my breath - it felt like she was pulling the vein out with the line! Anyway, as the redness was still there, she asked a doctor to come and look at it. It was decided that, to be on the safe side, I'd go on a course of Flucloxacillin. I felt a bit more reassured by this, after all, it was Christmas Eve and I didn't want to be ringing the out of hours team or, worse, going to A&E. The doctor drew a line of dashes around the redness and told me if it went out of this area or my temperature went up, I would have to come in and see someone. Fluclox in our sticky mitts, we said goodbye to the hospital until 2011.
Ha! Well, as we all know, not everything has been plain sailing and this was no exception. 2 doses of the Fluclox later and the redness had spread well beyond the line of dashes the doctor had drawn on my arm. What to do??? I hadn't really given the Fluclox long enough to have any effect, but the doctor had clearly said that if it spread I'd have to see someone. So, I rang the cancer ward and asked their advice first. To cut a long phone call short, I was advised to go into A&E, as I was 14 days post chemo and could be neutropenic. They would need to take bloods and I may have to go on IV antibiotics. Although I didn't feel 100%, I hadn't got a temperature and certainly didn't feel as bad as I did when I was last admitted to hospital. But, better to be safe than sorry I suppose..........Merry bloody Christmas. We made sure the kids were ok and set off.
After giving the Receptionist my details, we went straight through and waited and waited and waited. Then we were shown to a cubicle and waited and waited and waited. Then the nurse took my temperature etc. and then we waited and waited and waited. Then a doctor came and looked at my arm, prodded, asked questions and decided he didn't think it was necessary to take bloods as I seemed ok, there was no temperature and I should give the Fluclox time to work. We left around 01:00.............it would be a Merry Christmas after all!
We got up and wrapped presents first before handing them out! Then I spent the rest of the day drinking from the mug I got from Adam, eating chocolates out of the dish Livi got me and looking forward to reading the book that Vaughan got me. Livi helped out with the pigs in blankets and the boys set the table. Chris prepared all the veg and potatoes and I cooked it all. It was a very relaxing day, made all the better by being at home and not in hospital!
The Oncologist wanted to discuss my hormone treatment. There are 2 drugs I could go on - Tamoxifen or Arimidex. Arimidex is generally only prescribed for postmenopausal women and I'm not quite there yet! However, Tamoxifen can cause blood clots and I have been there! So, this is what the discussion centred around. I could go on Arimidex if I have regular injections of a drug called Zoladex. Not knowing much about any of them, I told Dr Newman I would be guided by him. It was eventually decided that I would go onto Tamoxifen for the next 3 months, whilst I'm still on the Clexane injections and then we'll review the situation after that. The Clexane will lessen the chance of a blood clot, but of course when I come off that, I will be at risk again - hence the review.
Once that was out of the way, I stripped off the top half and positioned myself on the couch - bum and legs had to be in a certain position. Then I was measured, drawn on and had this machine and green laser beam circling above and below me. They took x-rays (to make sure they miss vital organs!) and then I got what felt like 3 tattoos, although I can only find 2 now. They're only the size of a full stop, but it's so they can find the same place each time I have treatment. That was it - off we toddled.
The next few days were spent with Chris telling me we had to get a move on and get all the food and me spent telling him we had loads of time, so stop panicking! Just to shut him up, we went shopping. He compromised and we went in the evening, so I didn't have to mingle with all the germs and bugs.
It seemed ages for Friday to arrive and PICC line removal. I was glad when it finally did come around. My arm had been looking red around the entry site since Wednesday, but by Thursday it had calmed down a bit. However, by Thursday evening and Friday morning it had returned and looked quite angry. So was I to be honest, I wasn't sure that they'd take it out if there were signs of an infection.
We were tended by a nurse I hadn't met before and she didn't seem too concerned by the redness, although she took swabs. Her theory was that my arm was just so fed up with it, it wanted the line out. She told me what she was going to do and that it wouldn't hurt. She lied. It did hurt. I even muttered an ooooh! while I was supposed to be holding my breath - it felt like she was pulling the vein out with the line! Anyway, as the redness was still there, she asked a doctor to come and look at it. It was decided that, to be on the safe side, I'd go on a course of Flucloxacillin. I felt a bit more reassured by this, after all, it was Christmas Eve and I didn't want to be ringing the out of hours team or, worse, going to A&E. The doctor drew a line of dashes around the redness and told me if it went out of this area or my temperature went up, I would have to come in and see someone. Fluclox in our sticky mitts, we said goodbye to the hospital until 2011.
Ha! Well, as we all know, not everything has been plain sailing and this was no exception. 2 doses of the Fluclox later and the redness had spread well beyond the line of dashes the doctor had drawn on my arm. What to do??? I hadn't really given the Fluclox long enough to have any effect, but the doctor had clearly said that if it spread I'd have to see someone. So, I rang the cancer ward and asked their advice first. To cut a long phone call short, I was advised to go into A&E, as I was 14 days post chemo and could be neutropenic. They would need to take bloods and I may have to go on IV antibiotics. Although I didn't feel 100%, I hadn't got a temperature and certainly didn't feel as bad as I did when I was last admitted to hospital. But, better to be safe than sorry I suppose..........Merry bloody Christmas. We made sure the kids were ok and set off.
After giving the Receptionist my details, we went straight through and waited and waited and waited. Then we were shown to a cubicle and waited and waited and waited. Then the nurse took my temperature etc. and then we waited and waited and waited. Then a doctor came and looked at my arm, prodded, asked questions and decided he didn't think it was necessary to take bloods as I seemed ok, there was no temperature and I should give the Fluclox time to work. We left around 01:00.............it would be a Merry Christmas after all!
We got up and wrapped presents first before handing them out! Then I spent the rest of the day drinking from the mug I got from Adam, eating chocolates out of the dish Livi got me and looking forward to reading the book that Vaughan got me. Livi helped out with the pigs in blankets and the boys set the table. Chris prepared all the veg and potatoes and I cooked it all. It was a very relaxing day, made all the better by being at home and not in hospital!
Sunday, 19 December 2010
Things on my mind
I'm coming out of the chemo fog finally. I don't think it's quite hit me yet that I won't have to feel like that again (well, fingers crossed anyway). No, I've had other things on my mind.
After we saw the Oncologist and talked about the prognosis, Chris and I had different interpretations of what he'd said, so I decided to look it up on the internet (I know - fatal mistake). It turns out, my interpretation was correct, but the statistics I saw on the internet were a lot different from what the Oncologist had quoted. Yes, it's a UK site and a reputable one too - http://www.cancerhelp.org.uk/type/breast-cancer/treatment/statistics-and-outlook-for-breast-cancer#large - if you want to check! According to this, the size (one was 1.5cm and the other 2.6cm) and grade (grade 2 - only 3 grades) of my tumours and the fact they were in 6/17 lymph nodes says that I only have 30 - 50% chance of living to the 10 year mark. Chris thinks I'm wrong, that the consultant wouldn't have told me 70% if it wasn't true. He had to have a quick look at my notes, though, when I asked him the question and it was just a quick look. I don't think it registered with him that it was an intermediate grade.
Now, what to do with this news? Well, being me, I cried. All my thoughts of my future, hopes and dreams have been put in doubt (to be honest, I had these tears when I was diagnosed, not just now). Have I got a future? Well, yes, actually I have - I just don't know how long, but then none of us do. It's taking a while to get my head around this. The upshot is, though, I can't do anything about it. So why get stressed out? Mum says that once I get out of this cancer bubble and get back to my normal day to day life, this will be pushed to the back of my mind and I'll just get on with things. She's right of course, I can't do anything else. There's also the fact that I may be one of the 30 - 50% that reach the 10 year mark.
So there we are, that's what's primarily been on my mind this week. That, the side effects and life that goes on around me during the week after chemo.
This has included Liv's relationship ending, again (not her choice, so lots of tears). Lots and lots of snow and ice and the kids finishing school and college for the Christmas break. Talking of Christmas, we haven't got any decorations up yet, will have to sort that out this week I suppose! This is the week too that I'm paranoid about catching some bug or germ that'll put me back in hospital. There's plenty going about at the moment. A couple of the community nurses have been struck down and haven't been round to see me for a while. I can't put myself in isolation, this week of all weeks - too much to sort out still! I'll have to take Mary's (the district nurse who retired) advice and sniff a hanky with a few drops of tea tree oil on it to ward away infections.
Chris has also finished until after Christmas, so he's around to help out with the preparations. It's nice to have him around, although, at the moment he thinks he may be coming down with something!
Mum had to go back on Thursday because of the weather forecast, so her visit was cut short again. I can't believe that's the last time she'll be coming up for a while. I cannot begin to express how grateful we are to her. Naturally, I haven't been able to express it to her yet without becoming a blubbering mess. She has given up her own life selflessly each chemo cycle to become part of ours, looking after us and giving us all the love and support we need. As Chris said in his blog, we cannot thank her enough (yes, I'm a blubbering mess at the moment!). She's one in a million, I love her soooooooo much and don't know what I'd do without her (can't see what I'm typing now!). My Dad also has had to do without each time she came up, but has managed brilliantly and I'm very grateful to him too. He's never complained once and just accepted it as the done thing. So, it's thanks to both of you. (CHRIS! More tissues................!).
After we saw the Oncologist and talked about the prognosis, Chris and I had different interpretations of what he'd said, so I decided to look it up on the internet (I know - fatal mistake). It turns out, my interpretation was correct, but the statistics I saw on the internet were a lot different from what the Oncologist had quoted. Yes, it's a UK site and a reputable one too - http://www.cancerhelp.org.uk/type/breast-cancer/treatment/statistics-and-outlook-for-breast-cancer#large - if you want to check! According to this, the size (one was 1.5cm and the other 2.6cm) and grade (grade 2 - only 3 grades) of my tumours and the fact they were in 6/17 lymph nodes says that I only have 30 - 50% chance of living to the 10 year mark. Chris thinks I'm wrong, that the consultant wouldn't have told me 70% if it wasn't true. He had to have a quick look at my notes, though, when I asked him the question and it was just a quick look. I don't think it registered with him that it was an intermediate grade.
Now, what to do with this news? Well, being me, I cried. All my thoughts of my future, hopes and dreams have been put in doubt (to be honest, I had these tears when I was diagnosed, not just now). Have I got a future? Well, yes, actually I have - I just don't know how long, but then none of us do. It's taking a while to get my head around this. The upshot is, though, I can't do anything about it. So why get stressed out? Mum says that once I get out of this cancer bubble and get back to my normal day to day life, this will be pushed to the back of my mind and I'll just get on with things. She's right of course, I can't do anything else. There's also the fact that I may be one of the 30 - 50% that reach the 10 year mark.
So there we are, that's what's primarily been on my mind this week. That, the side effects and life that goes on around me during the week after chemo.
This has included Liv's relationship ending, again (not her choice, so lots of tears). Lots and lots of snow and ice and the kids finishing school and college for the Christmas break. Talking of Christmas, we haven't got any decorations up yet, will have to sort that out this week I suppose! This is the week too that I'm paranoid about catching some bug or germ that'll put me back in hospital. There's plenty going about at the moment. A couple of the community nurses have been struck down and haven't been round to see me for a while. I can't put myself in isolation, this week of all weeks - too much to sort out still! I'll have to take Mary's (the district nurse who retired) advice and sniff a hanky with a few drops of tea tree oil on it to ward away infections.
Chris has also finished until after Christmas, so he's around to help out with the preparations. It's nice to have him around, although, at the moment he thinks he may be coming down with something!
Mum had to go back on Thursday because of the weather forecast, so her visit was cut short again. I can't believe that's the last time she'll be coming up for a while. I cannot begin to express how grateful we are to her. Naturally, I haven't been able to express it to her yet without becoming a blubbering mess. She has given up her own life selflessly each chemo cycle to become part of ours, looking after us and giving us all the love and support we need. As Chris said in his blog, we cannot thank her enough (yes, I'm a blubbering mess at the moment!). She's one in a million, I love her soooooooo much and don't know what I'd do without her (can't see what I'm typing now!). My Dad also has had to do without each time she came up, but has managed brilliantly and I'm very grateful to him too. He's never complained once and just accepted it as the done thing. So, it's thanks to both of you. (CHRIS! More tissues................!).
Friday, 10 December 2010
Chemo #6 - last one!
OK, first things first - the Oncologist's visit. I wasn't looking forward to going really. I think it was the thought that a couple of days later I'd be having another dose of chemo. Strange really, I felt a bit queasy. Whilst we were waiting, the radiotherapy patients were told that one of the machines had broken down and they weren't expecting it back that day. So all non urgent patients were told to go home and they'd have their missed appointment tagged onto the end of their treatment. Those patients that needed to have their session that day, had a 2 hour wait in front of them. Can't be helped, but I hope it doesn't happen to me when my time comes.
Dr Newman, the Oncologist is lovely. He reminds me of one of the doctors at work (ha ha no names!). He's very patient and talked me through my options. All my questions were answered:
1. How do they know the chemo etc. has worked?
They don't. Unfortunately there isn't a test they can do for breast cancer like there is for prostate cancer. They just have to follow the best treatments for the type of cancer based on guidelines, research and statistics.
2.How can they be sure that it's nowhere else in my body?
I told him that I still struggled with the fact that there is no body scan to see if it's elsewhere, even though I'm aware that they won't pick up any cancer cells or small tumours. Apparently they used to do them routinely but it was found that in the vast majority of cases everything was fine. So now they only do them if there are symptoms. However, he was happy to book me in for one in February, if it put my mind at rest - so I said yes please.
3.I want to know what the prognosis is after all the treatment has finished.
For my type of cancer that has spread to more than 4 of the lymph nodes, the prognosis is 70% survival rate after 10 years. He did say that everyone is unique and the same cancer can react differently in different people. Time will tell......
He's prescribed my Tamoxifen - hormone treatment (which should give me hot flushes). He also recommends that I stay on anti-coagulants for 3 months because of the blood clot. He gave me the choice of either going on Warfarin (regular blood tests at the GP surgery) or staying on Clexane (daily injections). So, it sounded like swings and roundabouts until he said that there would be an interaction between Warfarin and Tamoxifen and they'd have to keep a closer eye on me. So it looks like the Clexane injections win.
Today's chemo went according to plan. We were a little late, as there had been an accident on the bypass just down the road and we had to take a detour. We stopped off too to buy a card, tin of biscuits for the chemo team and a six pack of Irn-Bru (a giggle we'd had early on with a couple of Scottish nurses in reference to the red chemo) - just to say thank you. They booked me in to have my PICC line out on the 24th December. I asked if I'd have to go back to the same place that I'd had it put in, but Karen said no they whip it out there! Can't wait - proper shower Christmas day maybe!
On our way out, we bumped into G taking her son to the Orthodontist. It's the works Christmas do tonight and I'm missing it for the first time in years. I want all the juicy gossip and plenty of photos!! That'll keep me going through next week.
So, here we go again - waiting for the side effects to kick in. Difference this time though is that's it - after this time, no more waiting for the side effects to kick in - bliss.
Dr Newman, the Oncologist is lovely. He reminds me of one of the doctors at work (ha ha no names!). He's very patient and talked me through my options. All my questions were answered:
1. How do they know the chemo etc. has worked?
They don't. Unfortunately there isn't a test they can do for breast cancer like there is for prostate cancer. They just have to follow the best treatments for the type of cancer based on guidelines, research and statistics.
2.How can they be sure that it's nowhere else in my body?
I told him that I still struggled with the fact that there is no body scan to see if it's elsewhere, even though I'm aware that they won't pick up any cancer cells or small tumours. Apparently they used to do them routinely but it was found that in the vast majority of cases everything was fine. So now they only do them if there are symptoms. However, he was happy to book me in for one in February, if it put my mind at rest - so I said yes please.
3.I want to know what the prognosis is after all the treatment has finished.
For my type of cancer that has spread to more than 4 of the lymph nodes, the prognosis is 70% survival rate after 10 years. He did say that everyone is unique and the same cancer can react differently in different people. Time will tell......
He's prescribed my Tamoxifen - hormone treatment (which should give me hot flushes). He also recommends that I stay on anti-coagulants for 3 months because of the blood clot. He gave me the choice of either going on Warfarin (regular blood tests at the GP surgery) or staying on Clexane (daily injections). So, it sounded like swings and roundabouts until he said that there would be an interaction between Warfarin and Tamoxifen and they'd have to keep a closer eye on me. So it looks like the Clexane injections win.
Today's chemo went according to plan. We were a little late, as there had been an accident on the bypass just down the road and we had to take a detour. We stopped off too to buy a card, tin of biscuits for the chemo team and a six pack of Irn-Bru (a giggle we'd had early on with a couple of Scottish nurses in reference to the red chemo) - just to say thank you. They booked me in to have my PICC line out on the 24th December. I asked if I'd have to go back to the same place that I'd had it put in, but Karen said no they whip it out there! Can't wait - proper shower Christmas day maybe!
On our way out, we bumped into G taking her son to the Orthodontist. It's the works Christmas do tonight and I'm missing it for the first time in years. I want all the juicy gossip and plenty of photos!! That'll keep me going through next week.
So, here we go again - waiting for the side effects to kick in. Difference this time though is that's it - after this time, no more waiting for the side effects to kick in - bliss.
Tuesday, 7 December 2010
I'm still here
Sorry for not updating everyone. I think my state of mind didn't help - bit low after this last treatment.
The last week has been filled with weather watching. DadD and Heather were due down this weekend, but had been surrounded by snow and frozen pipes, so we weren't sure if they'd make it. I text them on Friday afternoon and said that it was better to be safe than sorry as the news had reported blocked roads etc. I got one back saying they were 10 miles from Chippenham! They weren't due until the Saturday, so this was indeed a surprise. They'd taken the chance whilst they could and booked in an extra night at the Travelodge.
This meant that it was all systems go on Saturday when they came to us (bearing gifts of mince pies to have with fresh coffee!). We had arranged to have our Christmas dinner with them over the weekend. As it had been touch and go as to them coming, I hadn't got the turkey etc. So Saturday was Christmas food shopping in Waitrose. Managed to get a frozen turkey which spent the night in the kitchen defrosting.
Sunday was spent clothes shopping for Adam's Duke of Edinburgh training expedition this coming weekend. A coat, waterproof trousers, winter hiking trousers, backpack and a whistle later...........! Then back home to start the Christmas dinner. I haven't cooked a big meal like that in ages and I think it showed. Everyone was very polite though and said they enjoyed it. I have to admit, I was knackered by Sunday night.
Liv was shopping on Saturday and back at work on Sunday (yaaaay!), so she didn't get to see our visitors for very long. We scheduled the Christmas dinner for after she finished work on Sunday, so at least she was around for that. I took pity on her on Monday and got up early (well early for me!) to take her to work. I needed the car to pick the boys up as Liv was working until 17:00.
I'd arranged to have lunch with Susie B and she very kindly took me for an Indian. Brrrrr, it was cold out, but a 3 course lunch warmed us up. We were the only ones in there, so had very attentive staff!
Today was line flushing day with the District Nurse. That went ok, no problems. Tomorrow I'm at the hospital to see the Oncologist and have bloods taken for Friday's chemo (hoping they may get blood from the PICC line - I've been on Clexane for a while now). I'll hopefully find out a bit about radiotherapy. I have a few questions too, such as how do they know the chemo has worked? How can they be sure that it's nowhere else in my body? I want to know what the prognosis is after all the treatment has finished. My half empty outlook on life is convinced that at some stage in my future this is going to raise it's ugly head again somewhere else. I just hope that it gives me a break so I can have a decent future.
Sorry, maudlin again! On a more positive note, my hair seems to be growing back - at least on my head anyway. No point in a photo as you can hardly see it. It's very downy and Chris and the kids like to stroke it - that's when I'm not wearing a hat 'cos it's cold! We can't quite work out the colour yet. There seems to be a mixture of dark and light (for light read grey!), but we'll see.
Although it's the last chemo on Friday, my heart still sinks when I think of having to go through it again, but go through it I will! Then, I'll be able to have a relaxing Christmas without the prospect of another chemo session - woohoo!
The last week has been filled with weather watching. DadD and Heather were due down this weekend, but had been surrounded by snow and frozen pipes, so we weren't sure if they'd make it. I text them on Friday afternoon and said that it was better to be safe than sorry as the news had reported blocked roads etc. I got one back saying they were 10 miles from Chippenham! They weren't due until the Saturday, so this was indeed a surprise. They'd taken the chance whilst they could and booked in an extra night at the Travelodge.
This meant that it was all systems go on Saturday when they came to us (bearing gifts of mince pies to have with fresh coffee!). We had arranged to have our Christmas dinner with them over the weekend. As it had been touch and go as to them coming, I hadn't got the turkey etc. So Saturday was Christmas food shopping in Waitrose. Managed to get a frozen turkey which spent the night in the kitchen defrosting.
Sunday was spent clothes shopping for Adam's Duke of Edinburgh training expedition this coming weekend. A coat, waterproof trousers, winter hiking trousers, backpack and a whistle later...........! Then back home to start the Christmas dinner. I haven't cooked a big meal like that in ages and I think it showed. Everyone was very polite though and said they enjoyed it. I have to admit, I was knackered by Sunday night.
Liv was shopping on Saturday and back at work on Sunday (yaaaay!), so she didn't get to see our visitors for very long. We scheduled the Christmas dinner for after she finished work on Sunday, so at least she was around for that. I took pity on her on Monday and got up early (well early for me!) to take her to work. I needed the car to pick the boys up as Liv was working until 17:00.
I'd arranged to have lunch with Susie B and she very kindly took me for an Indian. Brrrrr, it was cold out, but a 3 course lunch warmed us up. We were the only ones in there, so had very attentive staff!
Today was line flushing day with the District Nurse. That went ok, no problems. Tomorrow I'm at the hospital to see the Oncologist and have bloods taken for Friday's chemo (hoping they may get blood from the PICC line - I've been on Clexane for a while now). I'll hopefully find out a bit about radiotherapy. I have a few questions too, such as how do they know the chemo has worked? How can they be sure that it's nowhere else in my body? I want to know what the prognosis is after all the treatment has finished. My half empty outlook on life is convinced that at some stage in my future this is going to raise it's ugly head again somewhere else. I just hope that it gives me a break so I can have a decent future.
Sorry, maudlin again! On a more positive note, my hair seems to be growing back - at least on my head anyway. No point in a photo as you can hardly see it. It's very downy and Chris and the kids like to stroke it - that's when I'm not wearing a hat 'cos it's cold! We can't quite work out the colour yet. There seems to be a mixture of dark and light (for light read grey!), but we'll see.
Although it's the last chemo on Friday, my heart still sinks when I think of having to go through it again, but go through it I will! Then, I'll be able to have a relaxing Christmas without the prospect of another chemo session - woohoo!
Sunday, 28 November 2010
It's me again - well nearly
It's been a strange week.
This time hasn't been as bad as the last, but still not pleasant. The fog came down and my limbs felt like they were glued to the floor. Aching all over, but no constant bone pain - the occasional twinge, but that didn't last long. I was a good girl this time and took paracetamol, so I'm sure that helped. No significant temperature this time either. The usual stale taste and raging thirst, sensitive finger and toe nails, hands and feet. One strange side effect is my teeth - they don't feel like they're mine, they don't seem to fit in my mouth properly (told you it's strange!). Once all this starts to subside, I feel better, but seem to reach a plateau. So, I still feel a bit rough and don't seem to improve for a while. The extra special bit about this half of the treatment is the tears. At the moment, I can cry for England. Even if someone trips up on TV, I'm in floods of tears. I'm not sure if it's a side effect of the Docetaxel or just me at this stage of the game. Most of the family have experienced wet shoulders and cheeks so far! I hate this sh*t for what it's doing to me and my family and friends.
Mum was persuaded to go back home on Thursday instead of Sunday. I'd looked at the weather on the Sky app on the phone when I woke up and there was a threat of snow in Cornwall on the Friday. I checked with the met office when I got up and it was definitely a possibility. Dad had already checked with us that, in the event of snow, we were able to put Mum up for longer as the cold spell is supposed to last for a couple of weeks at least. After we were satisfied that Thursday would be ok for her to travel, she got herself sorted and set off. Mum HATES the snow and won't walk in it, let alone drive in it. I knew she'd prefer to be stuck in at home and Dad would miss her if she didn't go back. She made it home no problem, although they'd had snow in Cornwall earlier on in the day. Typically, they didn't have any on Friday. Never mind, it didn't matter, as long as she got back ok.
It's freezing outside and I haven't stepped out of the door for over a week. Today, however, my darling husband took me for a walk. I wrapped up warm - 2 hats, no makeup just lippy (ha ha - just read that back - I did wear warm clothes too!) and we walked alongside a beautifully frozen canal. We only walked about a mile, but it was long enough and felt good. On the way back, we stopped off at the shop and enjoyed hot chocolate and doughnuts when we got home (shared with the boys, Liv was out - no, still not at work). Adam has managed to come down with a virus - cough, cold, temperature, so he's been dosed up and I'm trying to steer clear. He has GCSE controlled assessments at school this week, so I hope he feels better soon. Although, if the anticipated snow arrives on Tuesday/Wednesday, he won't be in school anyway. Vaughan also has GCSE exams, so I don't know what will happen if school is closed.
Mr Tins is busying himself cooking duck breasts for tea (courtesy of Mum), the boys are doing their homework and we're waiting for Liv to grace us with her presence. No tears from me since this morning, so the walk obviously did me good - either that or the cold has frozen my tear ducts......!
This time hasn't been as bad as the last, but still not pleasant. The fog came down and my limbs felt like they were glued to the floor. Aching all over, but no constant bone pain - the occasional twinge, but that didn't last long. I was a good girl this time and took paracetamol, so I'm sure that helped. No significant temperature this time either. The usual stale taste and raging thirst, sensitive finger and toe nails, hands and feet. One strange side effect is my teeth - they don't feel like they're mine, they don't seem to fit in my mouth properly (told you it's strange!). Once all this starts to subside, I feel better, but seem to reach a plateau. So, I still feel a bit rough and don't seem to improve for a while. The extra special bit about this half of the treatment is the tears. At the moment, I can cry for England. Even if someone trips up on TV, I'm in floods of tears. I'm not sure if it's a side effect of the Docetaxel or just me at this stage of the game. Most of the family have experienced wet shoulders and cheeks so far! I hate this sh*t for what it's doing to me and my family and friends.
Mum was persuaded to go back home on Thursday instead of Sunday. I'd looked at the weather on the Sky app on the phone when I woke up and there was a threat of snow in Cornwall on the Friday. I checked with the met office when I got up and it was definitely a possibility. Dad had already checked with us that, in the event of snow, we were able to put Mum up for longer as the cold spell is supposed to last for a couple of weeks at least. After we were satisfied that Thursday would be ok for her to travel, she got herself sorted and set off. Mum HATES the snow and won't walk in it, let alone drive in it. I knew she'd prefer to be stuck in at home and Dad would miss her if she didn't go back. She made it home no problem, although they'd had snow in Cornwall earlier on in the day. Typically, they didn't have any on Friday. Never mind, it didn't matter, as long as she got back ok.
It's freezing outside and I haven't stepped out of the door for over a week. Today, however, my darling husband took me for a walk. I wrapped up warm - 2 hats, no makeup just lippy (ha ha - just read that back - I did wear warm clothes too!) and we walked alongside a beautifully frozen canal. We only walked about a mile, but it was long enough and felt good. On the way back, we stopped off at the shop and enjoyed hot chocolate and doughnuts when we got home (shared with the boys, Liv was out - no, still not at work). Adam has managed to come down with a virus - cough, cold, temperature, so he's been dosed up and I'm trying to steer clear. He has GCSE controlled assessments at school this week, so I hope he feels better soon. Although, if the anticipated snow arrives on Tuesday/Wednesday, he won't be in school anyway. Vaughan also has GCSE exams, so I don't know what will happen if school is closed.
Mr Tins is busying himself cooking duck breasts for tea (courtesy of Mum), the boys are doing their homework and we're waiting for Liv to grace us with her presence. No tears from me since this morning, so the walk obviously did me good - either that or the cold has frozen my tear ducts......!
Saturday, 20 November 2010
Chemo #5
The week leading up to my last chemo hasn't been too bad. Chris had Tuesday, Wednesday and Thursday off, in order to go to various appointments with me and also for him. Tuesday saw us both at the RUH. He had his respiratory clinic review and I went into the chemo suite to have my bloods taken. The day didn't start off brilliantly really. We'd decided to spoil ourselves and go out for breakfast. Problem was, we'd both forgotten it was District Nurse day and we only remembered as we were about to set off in the car! So it was back in the house and wait until after midday before she arrived (toast and coffee had to suffice!). The PICC line flush went through ok, so I just had to worry about the afternoon bloods. Chris went off to his appointment and I went off to mine. No problem at all with mine, Fiona managed to get it first time - no bowl of warm water as I'd worn a glove right up until they were taken. She thought I was looking well - amazing what the steroids can do!
Managed a bit of exercise at the RUH - Chris' 1st appointment was on the second floor, then the next was on the ground floor and then back up to the second floor (all by stairs, of course!). All was fine there too and we got back home around 6ish. Helped by a friend picking Adam up and Liv, who picked up Vaughan after a 35 -0 rugby win at a school match (and he scored a try!).
Managed breakfast on Wednesday though! Liv, who wasn't at college deigned to come with us and moaned most of the time (does that ever stop???). Then she dragged us round some shops in the pouring rain. Ah well, Chris and I enjoyed our full english! We came home and they promptly fell asleep while I was busy playing with my new electric toothbrush (a grateful prezzy from Auntie Marjorie) - chemo etc plays havoc with your teeth!
Mum was due up on Wednesday, ready for the next onslaught. Unfortunately, the weather in Cornwall had been foul and the only 2 decent roads out of the county were closed. So that was put off until Thursday and she duly arrived with food parcels!
Thursday was blast day again - chemo number 5. As everyone keeps saying to me - only one more to go, but as I still have to go through it and get over each one, it still seems like there's a way to go. I know there isn't, but I'll be happier when I've got over the last one. We came home and found a letter from the hospital with my radiotherapy dates! Nice surprise. At least, nice surprise knowing when it's going to be - of course, I haven't been through it yet, so I don't know if it will be "nice"! My first appointment is on the 21st December. This (I think), is to tattoo me and plan my treatment. Then it all kicks off on the 5th January (would be my Granny's 101st birthday!) to the 2nd of February - Monday to Friday - 4 weeks of treatment. I can discuss it more with the Oncologist on the 8th December (2 days before my last chemo), so will hopefully know more then.
Although I felt a bit "jangly" on Friday, I felt like going out. By the time I'd got up and in between various injections and medications, Mum and I only managed to get out to Leekes! A quick trip and she had to go and pick up the boys.
A nice surprise followed in the evening when Livi text to say she had something to tell me (!!!). I managed to persuade her not to wait until she got home. She's had her lip pierced (well it's a stud just under her lip)! Naturally, she'd though it through thoroughly. She can't work until she can take the stud out (about 3 weeks). Great for her Christmas finances! Yes, yes, I know she'll grow out of it, but I ask you!!
Today, Saturday, I've been flagging. I even fell asleep during the England Samoa match! Although I'm not feeling horrendous, I'm tired and heavy limbed. I went out with Chris for a paper this morning, but I'm not sure yet what tomorrow will bring. So on that note, I'll say TTFN and post when I can.......
Managed a bit of exercise at the RUH - Chris' 1st appointment was on the second floor, then the next was on the ground floor and then back up to the second floor (all by stairs, of course!). All was fine there too and we got back home around 6ish. Helped by a friend picking Adam up and Liv, who picked up Vaughan after a 35 -0 rugby win at a school match (and he scored a try!).
Managed breakfast on Wednesday though! Liv, who wasn't at college deigned to come with us and moaned most of the time (does that ever stop???). Then she dragged us round some shops in the pouring rain. Ah well, Chris and I enjoyed our full english! We came home and they promptly fell asleep while I was busy playing with my new electric toothbrush (a grateful prezzy from Auntie Marjorie) - chemo etc plays havoc with your teeth!
Mum was due up on Wednesday, ready for the next onslaught. Unfortunately, the weather in Cornwall had been foul and the only 2 decent roads out of the county were closed. So that was put off until Thursday and she duly arrived with food parcels!
Thursday was blast day again - chemo number 5. As everyone keeps saying to me - only one more to go, but as I still have to go through it and get over each one, it still seems like there's a way to go. I know there isn't, but I'll be happier when I've got over the last one. We came home and found a letter from the hospital with my radiotherapy dates! Nice surprise. At least, nice surprise knowing when it's going to be - of course, I haven't been through it yet, so I don't know if it will be "nice"! My first appointment is on the 21st December. This (I think), is to tattoo me and plan my treatment. Then it all kicks off on the 5th January (would be my Granny's 101st birthday!) to the 2nd of February - Monday to Friday - 4 weeks of treatment. I can discuss it more with the Oncologist on the 8th December (2 days before my last chemo), so will hopefully know more then.
Although I felt a bit "jangly" on Friday, I felt like going out. By the time I'd got up and in between various injections and medications, Mum and I only managed to get out to Leekes! A quick trip and she had to go and pick up the boys.
A nice surprise followed in the evening when Livi text to say she had something to tell me (!!!). I managed to persuade her not to wait until she got home. She's had her lip pierced (well it's a stud just under her lip)! Naturally, she'd though it through thoroughly. She can't work until she can take the stud out (about 3 weeks). Great for her Christmas finances! Yes, yes, I know she'll grow out of it, but I ask you!!
Today, Saturday, I've been flagging. I even fell asleep during the England Samoa match! Although I'm not feeling horrendous, I'm tired and heavy limbed. I went out with Chris for a paper this morning, but I'm not sure yet what tomorrow will bring. So on that note, I'll say TTFN and post when I can.......
Saturday, 13 November 2010
Although it's been a quiet week, it's passed surprisingly quickly.
I've been more tired this week than I was during the last 2 cycles of chemo. Whether that's the new chemo drug or just a build up of the last 4 cycles, I don't know. Have also been a bit down - to be expected during chemo, I'm told. Crying at the drop of a hat is becoming a bit too common - dramas, documentaries, books, oh yeah and the fact I have cancer, the treatment's horrid and I'll always be looking over my shoulder for it to re-surface (not sure I'll ever be convinced that it's all gone). I'm fat, bald, only have one boob and as a result, have nothing "nice" to wear (yes, I'm wallowing!).
It's not all been tears, honest. On Wednesday, my lovely daughter drove me to hospital for an appointment to sort out medications for the next round of chemo. We drove the long way round and she did very well - you'd think she'd been driving for ages. It's the first time she's been with me to hospital. Up until this point, I've never seen anyone in there that I know. Would you believe it, the day Livi comes with me, we saw 2 girls that she used to go to primary school with! Medications sorted, we drove back and stopped for lunch at our local garden centre (cracking coffee).
I had visitors on Thursday - H and baby Jessica. Jessica's really changing now. She was smiling and gurgling away as she was propped up on cushions on the chair with her Mum. It was nice catching up with H.
Friday was statlock change day, woohoo :-(. True to form, the old one took part of my skin with it and the new one was laid on top. At least I have a week to get over it before it's changed again. My arm is blistering too now where the gauze dressing is taped on. Little I can do about that - just have to keep changing the position of the tape.
About an hour after the district nurse had been, I had another visitor. It was lovely to see Rob. Caught up a little on work, life and good things to watch on DVD and TV.
Early evening saw a trip to the surgery for the kids to have their 'flu jabs (thanks Catherine and Linda). Chris had his earlier on in the week (all for my benefit!). Nice to see Deb R, Judy, Deb J, Catherine and Linda during our brief visit.
Today, we were supposed to go out for a nice walk, but we didn't quite get there. Pleased really as we got to see England's brilliant rugby win against Australia, 35-18! Had it on surround sound and sang and cheered with the Twickenham crowd (well I did anyway!).
And now it's time for our Indian (meal that is!).
So you see, it's not been that bad really - I just have to convince myself mentally that that's the case..........
I've been more tired this week than I was during the last 2 cycles of chemo. Whether that's the new chemo drug or just a build up of the last 4 cycles, I don't know. Have also been a bit down - to be expected during chemo, I'm told. Crying at the drop of a hat is becoming a bit too common - dramas, documentaries, books, oh yeah and the fact I have cancer, the treatment's horrid and I'll always be looking over my shoulder for it to re-surface (not sure I'll ever be convinced that it's all gone). I'm fat, bald, only have one boob and as a result, have nothing "nice" to wear (yes, I'm wallowing!).
It's not all been tears, honest. On Wednesday, my lovely daughter drove me to hospital for an appointment to sort out medications for the next round of chemo. We drove the long way round and she did very well - you'd think she'd been driving for ages. It's the first time she's been with me to hospital. Up until this point, I've never seen anyone in there that I know. Would you believe it, the day Livi comes with me, we saw 2 girls that she used to go to primary school with! Medications sorted, we drove back and stopped for lunch at our local garden centre (cracking coffee).
I had visitors on Thursday - H and baby Jessica. Jessica's really changing now. She was smiling and gurgling away as she was propped up on cushions on the chair with her Mum. It was nice catching up with H.
Friday was statlock change day, woohoo :-(. True to form, the old one took part of my skin with it and the new one was laid on top. At least I have a week to get over it before it's changed again. My arm is blistering too now where the gauze dressing is taped on. Little I can do about that - just have to keep changing the position of the tape.
About an hour after the district nurse had been, I had another visitor. It was lovely to see Rob. Caught up a little on work, life and good things to watch on DVD and TV.
Early evening saw a trip to the surgery for the kids to have their 'flu jabs (thanks Catherine and Linda). Chris had his earlier on in the week (all for my benefit!). Nice to see Deb R, Judy, Deb J, Catherine and Linda during our brief visit.
Today, we were supposed to go out for a nice walk, but we didn't quite get there. Pleased really as we got to see England's brilliant rugby win against Australia, 35-18! Had it on surround sound and sang and cheered with the Twickenham crowd (well I did anyway!).
And now it's time for our Indian (meal that is!).
So you see, it's not been that bad really - I just have to convince myself mentally that that's the case..........
Sunday, 7 November 2010
Crack on!
Welcome to the next installment of "What can we throw at Tracey now?"!
Somebody somewhere is thinking "right, she's getting a bit stronger now, what else can we give her to knock her back a bit?".
Friday was District Nurse day. It was nice to see a familiar face. I showed Yvonne the bruises I'd been inflicting upon myself with the Clexane injection and she wondered how I'd been doing it. Turns out I hadn't been finishing it off properly! Once you've injected all the drug, you continue pushing down, which releases a tube. This shoots out and retracts the needle, so you don't have to pull it out. This is easier said than done. It takes an effort to push it so the tube clicks out. So (picture this - well maybe not), each time I'm sitting on the bed, jabbing myself with this needle, pushing the drug through and then trying to push down further on the plunger, without pushing the needle further into my tummy. Yes, it is a sight! Anyway, practice makes perfect and I have plenty of opportunity for that.
Whilst changing the statlock, it was also noticed that the entry site for the line looks red again (oh great, more antibiotics?). Yvonne wanted me to ring the Chemo Suite just to ask their advice, which I duly did. I spoke to Karen, who said she'd need to see it to make any judgement. However, as I wasn't too concerned and the redness hadn't (and still hasn't) spread, wasn't hot, sore or hard, she was happy for me to keep an eye on it. Came off the phone thinking, well, that's ok, with any luck I won't have to call the Out of Hours medical team........................how wrong was I (and it's not what you think)????????
Friday evening, Chris got fish and chips for us all, to give Mum a night off! I didn't know if I'd eat it all, but was going to give it a good go! Just after I'd started tucking in (and was really enjoying it), I was chewing away and felt a hard lump in my mouth. It definitely wasn't fish or chip..............it was my tooth! I'd cracked off a bit of tooth at the back of my mouth. It wasn't a huge chunk, but it left a sharp jagged edge on the tooth which my tongue found easy to rub against. Oh bloody brilliant!! I was really enjoying my fish and chips up until that point.
Right. What to do now? After various discussions, I decided to ring the ward and ask their advice. The junior sister I spoke to told me that it was not a good time for me, as I'm going through my neutropenic phase (cracking your tooth isn't a good time for anyone at any stage!). She said I could ring the emergency dental team and see what they say, but I'm not allowed to have any invasive procedures or any injections and that I'd need to have bloods taken before anything was done anyway, to check my neutrophil count. It's a catch 22 situation really. I may get an infection in the tooth in it's present state, or I may get an infection if I have anything done about it. Mmmmmm........Anyway, I rang the Out of Hours number and eventually talked to a triage dental nurse, who booked me an appointment to see the emergency dentist the next day.
So, that's where Mum and I spent part of the afternoon on Saturday, whilst the rest of the family went to North Petherton to visit family and watch the carnival (I'm sure you have more of that to come from an excitable Mr Tins on his blog!). The dentist was a really nice understanding Scottish lady. She didn't know her way around the treatment room and the dental nurse kept telling her what the other dentists do and how unusual she was as the others didn't do that! Not a match made in heaven, but they did what they could for me. This included filing the tooth down a bit and sticking a filling in. The filling was stuck in, not drilled in and may not last long. The good news though, is that the original filling in the tooth is still intact, so there's no emergency in getting it filled properly. That said, she did say to get it sorted as soon as I can. This looks likely to be in my 3rd week, if my neutrophil count is ok and I can get an appointment with my own dentist!
Today was a quiet day for everyone except Chris and Mum. They didn't get in until 01:00 and then Chris had to take Vaughan and a friend over to Swindon for 10:00 for a rugby match (they lost 43 - 24!). The rest of us slobbed around and ate bacon butties courtesy of Mum. There was just time for her to rustle up a choc krispies thing for the kids, check my dressing and do a Sainsbury's shop for me, before heading off home (hopefully in time for the last Downton Abbey)!
Chris is busy in the kitchen serving up a roast chicken dinner, so I think it's time I stopped now and gave it the time and effort it deserves!
x
Somebody somewhere is thinking "right, she's getting a bit stronger now, what else can we give her to knock her back a bit?".
Friday was District Nurse day. It was nice to see a familiar face. I showed Yvonne the bruises I'd been inflicting upon myself with the Clexane injection and she wondered how I'd been doing it. Turns out I hadn't been finishing it off properly! Once you've injected all the drug, you continue pushing down, which releases a tube. This shoots out and retracts the needle, so you don't have to pull it out. This is easier said than done. It takes an effort to push it so the tube clicks out. So (picture this - well maybe not), each time I'm sitting on the bed, jabbing myself with this needle, pushing the drug through and then trying to push down further on the plunger, without pushing the needle further into my tummy. Yes, it is a sight! Anyway, practice makes perfect and I have plenty of opportunity for that.
Whilst changing the statlock, it was also noticed that the entry site for the line looks red again (oh great, more antibiotics?). Yvonne wanted me to ring the Chemo Suite just to ask their advice, which I duly did. I spoke to Karen, who said she'd need to see it to make any judgement. However, as I wasn't too concerned and the redness hadn't (and still hasn't) spread, wasn't hot, sore or hard, she was happy for me to keep an eye on it. Came off the phone thinking, well, that's ok, with any luck I won't have to call the Out of Hours medical team........................how wrong was I (and it's not what you think)????????
Friday evening, Chris got fish and chips for us all, to give Mum a night off! I didn't know if I'd eat it all, but was going to give it a good go! Just after I'd started tucking in (and was really enjoying it), I was chewing away and felt a hard lump in my mouth. It definitely wasn't fish or chip..............it was my tooth! I'd cracked off a bit of tooth at the back of my mouth. It wasn't a huge chunk, but it left a sharp jagged edge on the tooth which my tongue found easy to rub against. Oh bloody brilliant!! I was really enjoying my fish and chips up until that point.
Right. What to do now? After various discussions, I decided to ring the ward and ask their advice. The junior sister I spoke to told me that it was not a good time for me, as I'm going through my neutropenic phase (cracking your tooth isn't a good time for anyone at any stage!). She said I could ring the emergency dental team and see what they say, but I'm not allowed to have any invasive procedures or any injections and that I'd need to have bloods taken before anything was done anyway, to check my neutrophil count. It's a catch 22 situation really. I may get an infection in the tooth in it's present state, or I may get an infection if I have anything done about it. Mmmmmm........Anyway, I rang the Out of Hours number and eventually talked to a triage dental nurse, who booked me an appointment to see the emergency dentist the next day.
So, that's where Mum and I spent part of the afternoon on Saturday, whilst the rest of the family went to North Petherton to visit family and watch the carnival (I'm sure you have more of that to come from an excitable Mr Tins on his blog!). The dentist was a really nice understanding Scottish lady. She didn't know her way around the treatment room and the dental nurse kept telling her what the other dentists do and how unusual she was as the others didn't do that! Not a match made in heaven, but they did what they could for me. This included filing the tooth down a bit and sticking a filling in. The filling was stuck in, not drilled in and may not last long. The good news though, is that the original filling in the tooth is still intact, so there's no emergency in getting it filled properly. That said, she did say to get it sorted as soon as I can. This looks likely to be in my 3rd week, if my neutrophil count is ok and I can get an appointment with my own dentist!
Today was a quiet day for everyone except Chris and Mum. They didn't get in until 01:00 and then Chris had to take Vaughan and a friend over to Swindon for 10:00 for a rugby match (they lost 43 - 24!). The rest of us slobbed around and ate bacon butties courtesy of Mum. There was just time for her to rustle up a choc krispies thing for the kids, check my dressing and do a Sainsbury's shop for me, before heading off home (hopefully in time for the last Downton Abbey)!
Chris is busy in the kitchen serving up a roast chicken dinner, so I think it's time I stopped now and gave it the time and effort it deserves!
x
Wednesday, 3 November 2010
Brief update
Promise this is just a brief update! I haven't had a good few days since Friday's chemo and it's only with the help of Ibuprofen that I'm on here now.
As Chris has already told you, I woke up the day after completely "wired" - I couldn't stop talking. Naturally, it didn't last long, I'd crashed by lunchtime.
First couple of days after the Docetaxel were similar. I was very tired and was aching slightly all over. My hands and feet felt a little sore and my nails are quite sensitive (may lose them as well then!).
Monday, however was a different matter! Ouch! Every part of my body ached. I managed to get from the bed to the sofa, but that's about it all day. Joints were sore and my body felt like lead. Not comfortable in bed nor on the sofa, so what do you do? Well, if you're me, you don't take any painkillers and just sit and suffer and try and sleep it off (not the correct action to take, I may add!).
Tuesday, I felt rotten too, although not as sore. So rotten, in fact, that I decided to start taking my temperature. I felt similar to when I had the infection. It started off ok, but by 19:00 it had gradually risen and was up to 38F. Oh great, here we go again. Now I was obsessed. I'd already worked out who would pick up Vaughan from rugby; that this time I would pack a bag; that I would wear gloves to A&E so my hands would be warm to get bloods!
The good news (my god there's good news in all of this??!!) is that it started to come down - 37.7, 37.6. Phew, a reprieve. The problem with this chemo drug is that it makes you feel like you've got an infection, so you don't know for sure if you have or not - are your symptoms part of the reaction to the drug?
Today has been a better day - hence the update. Didn't know where to put myself this morning - I just couldn't get comfortable anywhere. Then good ole ibuprofen came to the rescue! Only problem with this is that you can't rely on an accurate temperature reading, so I took it just after an acceptable one! With Mum re-arranging my cushions, I am comfortable for the first time in days.
I have little appetite (won't do me any harm!), but am eating whatever Mum brings to me. I still have a stale taste in my mouth most of the time. I am hungry though and looking forward to roast chicken tonight.
Apologies if this post doesn't seem to flow right, I've still got a bit of a fog about me! Must go and take my temperature..........
As Chris has already told you, I woke up the day after completely "wired" - I couldn't stop talking. Naturally, it didn't last long, I'd crashed by lunchtime.
First couple of days after the Docetaxel were similar. I was very tired and was aching slightly all over. My hands and feet felt a little sore and my nails are quite sensitive (may lose them as well then!).
Monday, however was a different matter! Ouch! Every part of my body ached. I managed to get from the bed to the sofa, but that's about it all day. Joints were sore and my body felt like lead. Not comfortable in bed nor on the sofa, so what do you do? Well, if you're me, you don't take any painkillers and just sit and suffer and try and sleep it off (not the correct action to take, I may add!).
Tuesday, I felt rotten too, although not as sore. So rotten, in fact, that I decided to start taking my temperature. I felt similar to when I had the infection. It started off ok, but by 19:00 it had gradually risen and was up to 38F. Oh great, here we go again. Now I was obsessed. I'd already worked out who would pick up Vaughan from rugby; that this time I would pack a bag; that I would wear gloves to A&E so my hands would be warm to get bloods!
The good news (my god there's good news in all of this??!!) is that it started to come down - 37.7, 37.6. Phew, a reprieve. The problem with this chemo drug is that it makes you feel like you've got an infection, so you don't know for sure if you have or not - are your symptoms part of the reaction to the drug?
Today has been a better day - hence the update. Didn't know where to put myself this morning - I just couldn't get comfortable anywhere. Then good ole ibuprofen came to the rescue! Only problem with this is that you can't rely on an accurate temperature reading, so I took it just after an acceptable one! With Mum re-arranging my cushions, I am comfortable for the first time in days.
I have little appetite (won't do me any harm!), but am eating whatever Mum brings to me. I still have a stale taste in my mouth most of the time. I am hungry though and looking forward to roast chicken tonight.
Apologies if this post doesn't seem to flow right, I've still got a bit of a fog about me! Must go and take my temperature..........
Friday, 29 October 2010
Clot, clot, quick, quick - go!
We arrived 10 minutes early for the Doppler scan. It was only us in the waiting room, so we were soon seen. The young man carrying out the scan asked me if I was wearing a bra under my top and handed me a towel telling me I could wrap it round me and sit on the side of the couch. Now, I'm not sure what this says about me, but I thought he meant take it all off and wrap the towel round (Chris thought so too!). Apparently not. When he came back in the room, he said I could have kept the bra on. Well, as I was wearing Frances, it was probably better off than on! Anyway, after lifting my chin, holding my breath and lifting my arm for what seemed like ages, the Doppler was over. He was surprised I was having the scan with the PICC line still in, but I explained that they didn't want to take it out before checking if there was a clot. This, it seemed, made it difficult to give a definitive answer to the clot question, but he was 80% sure there was one there. He rang the registrar and gave him the news and we traipsed back to the chemo suite to await a decision.
The girls there have been brilliant, especially Karen and Fiona. Gareth, the registrar, was convinced it would be ok to carry on with the chemo, but to flush it first to see how well that went in. Karen (senior sister) duly did the flush and rang Gareth back to tell him it went through ok. She still wasn't convinced though about giving the chemo, as she didn't want it to reach the clot and then come back down the line and cause problems (as it had with another patient).
Gareth came to look at my arm and have a chat. He explained the results of the scan, telling us that all looked fine below and above the clot. He'd had a chat with my consultant, Dr Newman, and recommended daily Clexane injections until my PICC's removed (sometime in January). This will slowly break up the clot and make sure that no more appear. I had this injection every night in both my hospital stays as I wasn't moving around a lot - bit stingy, but ok. The issue of not getting blood from the line will still exist, of course, but with agreement from Karen, I can go to the chemo suite to have pre-chemo bloods taken, as they seem to be the only ones that can get blood out of my hand without too much fuss. I just hope I don't have to have any other bloods taken by anyone else ie A&E! Will have to be extra careful. As a result of all this, I didn't have to go down to see the radiographer after all. As I'd had to have breakfast before 7 this morning, Chris went to get me a nut bar to nibble on before my treatment.
Karen seemed more satisfied after this explanation, but still wanted to double check by putting a bag of saline in first. This went in really well and to double, double check, she tried to draw blood from the line again. No blood (naturally!), but also no saline, which meant that it had gone through ok. Once I'd been weighed (yes I've put on!), I was plugged into the Docetaxel. The gauze had already been taken off my statlock, to give the sores a chance to dry out, but also to see if there would be any reaction to the Docetaxel. Karen explained some things to look out for - more hair loss (am hoping for the arm hairs this time and more off the legs - shaved this morning and 1 leg was hairier than the other!), possible finger and toe nail loss, facial redness, neuropathy of the hands and feet, aches and pains, to name but a few. The nausea we'll have to see about, but yes possibly that too. Another thing is that the neutrophils will start going down earlier - by day 3 - 4. With the Neulasta and the Clexane, I'll be as proficient as Dad at self injecting!
The Docetaxel went in well, no reactions. I had a cat nap, while Chris wandered off to buy Private Eye and sneak a packet of beef Hoola Hoops. He smelled lovely when he came back and promised to buy me some when we finished. I'd have loved anything to eat!
Finally got home and Chris crashed on the sofa. I too was knacked, but have stayed awake in the hope I'll sleep ok tonight! I'm currently feeling not too bad, tired and a bit achey, but not as yucky as after the FEC. I put this down to not having the ice lollies and water!
Chris took Adam to Futsal where they lost 16 -1! Livi drove her and Sam to Salisbury, both arrived back safely and Vaughan has had a huge amount of homework before his mocks (although I'm not sure the computer has been used solely for that!). Ooh, and "Rita" arrived. In fact I'm wearing her at the moment. Don't worry Auntie Ritas, she's not as bad as Frances and Nora! Not convinced she's the one yet, but I'll keep persevering!
As my lovely Mummy has just arrived, complete with goodie bags of food, I'd better go and say hello!
I'm not sure how I'm going to be after this treatment, but I'll let you know when I can......
The girls there have been brilliant, especially Karen and Fiona. Gareth, the registrar, was convinced it would be ok to carry on with the chemo, but to flush it first to see how well that went in. Karen (senior sister) duly did the flush and rang Gareth back to tell him it went through ok. She still wasn't convinced though about giving the chemo, as she didn't want it to reach the clot and then come back down the line and cause problems (as it had with another patient).
Gareth came to look at my arm and have a chat. He explained the results of the scan, telling us that all looked fine below and above the clot. He'd had a chat with my consultant, Dr Newman, and recommended daily Clexane injections until my PICC's removed (sometime in January). This will slowly break up the clot and make sure that no more appear. I had this injection every night in both my hospital stays as I wasn't moving around a lot - bit stingy, but ok. The issue of not getting blood from the line will still exist, of course, but with agreement from Karen, I can go to the chemo suite to have pre-chemo bloods taken, as they seem to be the only ones that can get blood out of my hand without too much fuss. I just hope I don't have to have any other bloods taken by anyone else ie A&E! Will have to be extra careful. As a result of all this, I didn't have to go down to see the radiographer after all. As I'd had to have breakfast before 7 this morning, Chris went to get me a nut bar to nibble on before my treatment.
Karen seemed more satisfied after this explanation, but still wanted to double check by putting a bag of saline in first. This went in really well and to double, double check, she tried to draw blood from the line again. No blood (naturally!), but also no saline, which meant that it had gone through ok. Once I'd been weighed (yes I've put on!), I was plugged into the Docetaxel. The gauze had already been taken off my statlock, to give the sores a chance to dry out, but also to see if there would be any reaction to the Docetaxel. Karen explained some things to look out for - more hair loss (am hoping for the arm hairs this time and more off the legs - shaved this morning and 1 leg was hairier than the other!), possible finger and toe nail loss, facial redness, neuropathy of the hands and feet, aches and pains, to name but a few. The nausea we'll have to see about, but yes possibly that too. Another thing is that the neutrophils will start going down earlier - by day 3 - 4. With the Neulasta and the Clexane, I'll be as proficient as Dad at self injecting!
The Docetaxel went in well, no reactions. I had a cat nap, while Chris wandered off to buy Private Eye and sneak a packet of beef Hoola Hoops. He smelled lovely when he came back and promised to buy me some when we finished. I'd have loved anything to eat!
Finally got home and Chris crashed on the sofa. I too was knacked, but have stayed awake in the hope I'll sleep ok tonight! I'm currently feeling not too bad, tired and a bit achey, but not as yucky as after the FEC. I put this down to not having the ice lollies and water!
Chris took Adam to Futsal where they lost 16 -1! Livi drove her and Sam to Salisbury, both arrived back safely and Vaughan has had a huge amount of homework before his mocks (although I'm not sure the computer has been used solely for that!). Ooh, and "Rita" arrived. In fact I'm wearing her at the moment. Don't worry Auntie Ritas, she's not as bad as Frances and Nora! Not convinced she's the one yet, but I'll keep persevering!
As my lovely Mummy has just arrived, complete with goodie bags of food, I'd better go and say hello!
I'm not sure how I'm going to be after this treatment, but I'll let you know when I can......
Thursday, 28 October 2010
PICC up your troubles.....and smile!
We trotted off to the chemo suite yesterday (Wednesday), in the hope that they would be able to get blood out of this particular stone. Bea injected the Urokinase and Chris and I trooped off to the Friends coffee shop for a butty and a drink. Went commando again (at this rate I'll be going as Mrs 1TT soon too - mmmm, maybe not!).
At 15:00 we went back to the chemo suite. Karen, the sister, took over. The line was flushed I don't know how many times and I don't know how many syringes were used to try and get blood. Karen tried her hardest to draw it out but it didn't want to come. Until, suddenly, slowly, it appeared - well sort of. We were all congratulating her on her efforts, when it stopped. It was coming out soooooo slowly, it was clotting in the vial as soon as it reached it. No good for samples. A lady in the next chair told me that she'd moaned at the 3 attempts made to get blood from her arm, that I made her feel very humble and I was very brave. It was kind of her, but bravery doesn't come into it - I'm very passive and just let them get on with it.
Then the dressing was taken off to look at the arm. There was a swelling near the site and my hand was a bit swollen, so the Registrar came to have a look. It was finally decided that I should have a Doppler scan to see if there were any clots in the arm. The form was duly faxed off and we waited to see what time my appointment would be.
In the meantime, my hand was put in a bowl of warm water to fatten the veins up a bit before the nurse attempted to go in on the outside back of my wrist. Butterfly needle, only slight sting and she got in first time! 3 vials were slowly filled, so not an entirely wasted visit.
There were also calls to the radiologist who put the line in originally. She reluctantly agreed to have a look and maybe put some dye in to see if there was any blockage. She suggested Karen try and pull the line out slightly and then try again, in case it was sitting against the vein wall. This meant taking the statlock dressing off! Ouch!! A new statlock was put back on, but, as the line had been moved slightly it managed to miss the sore bits. Just as well as they're looking really raw. Guess what? No luck, no blood.
Unfortunately the Radiologist couldn't see me until the next day and as we hadn't heard from vascular studies, it was decided to let us go home and to come back the next day at 11:00. This was about 16:45 and we'd arrived at 14:00. There's a lot of hanging around in hospitals!
So, today (Thursday), we arrived at 11:00. Fiona (assistant practitioner) was dealing with it today in Karen's absence. She rang vascular studies to be told the only appointment they could give me was tomorrow at 10:00. This had a knock on effect on the PICC line tests. The Registrar didn't want to have the line disturbed without finding out if the arm had a clot or not. She also rang vascular studies, but was told it was only a trainee on today - she had a long list and wasn't very confident. Various phone calls were made to the radiologist again, who was undertaking a tricky procedure and would get back to Fiona. So we waited and we waited and we waited. Reminder calls were made, but nothing. In the end, around 12:30, Fiona said to go home - it didn't seem likely that they would agree to seeing me without the Doppler scan being done first anyway. That was that. Sod it! Home, pick up boys and then out for lunch!!
We have to go back tomorrow for a scan at 10:00 and then back to the chemo suite. Then, depending on the results of the scan, we'll go to see the radiologist and have some dye injected into the line before they decide if I can have chemo tomorrow as scheduled. If not, then it may have to be delayed until next week (hopefully Monday). It seems this next round of chemo (Docetaxel) takes a little longer for the first treatment - we have to wait an hour after. If, tomorrow, the line is completely knacked then I may have to have it taken out and a Hickman line put in, but that has to be inserted in theatre and I have to wait for a slot. If this happens my chemo will be late, which means that Christmas may not be quite as lovely a time as I was hoping for.
Got it????? No, I'm not sure I have either. It seems that the Registrar and the Radiologist aren't that bothered, but the chemo sister is. Karen would rather have a better idea of what's going on, rather than putting chemo in a line that might not be performing well. It seems the only problem is not getting blood out of it. Anything that's injected into it seems to go in ok, so I can see why they're thinking of leaving it alone. On the other hand, the blood was very thick and gloopy yesterday, so what's going on there? There's also the faff of not getting any decent veins for bloods - that seems a bit hit and miss and I usually end up looking like a pin cushion (a cushion that's lost its cush as Vaughan says!). AND, there's still 3 more treatments to go!! Feel a bit dejected really and also not sure what's going to happen tomorrow. Never thought I'd hear myself say it, but I WANT chemo tomorrow. I don't want to put it off.
Poor Mum's on standby. Although, she may come up tomorrow evening anyway - chemo or not. She's made lasagnes, cottage pies etc and they can't go to waste now, can they?!
On a lighter note - I've ordered another bra! This one's called Rita!!!! Sorry Auntie Ritas (no, not poor grammar - there are 2 of them), it's not sexy and sophisticated, but it looks better than the 1950's effort in M&S. Having said that, if the 1950's one made me look like Christina Hendricks (Joan) in Mad Men, then it may be worth a try! No..........I think you're right...........I've got no chance, I'd better stick with Frances, Nora and hopefully Rita!
At 15:00 we went back to the chemo suite. Karen, the sister, took over. The line was flushed I don't know how many times and I don't know how many syringes were used to try and get blood. Karen tried her hardest to draw it out but it didn't want to come. Until, suddenly, slowly, it appeared - well sort of. We were all congratulating her on her efforts, when it stopped. It was coming out soooooo slowly, it was clotting in the vial as soon as it reached it. No good for samples. A lady in the next chair told me that she'd moaned at the 3 attempts made to get blood from her arm, that I made her feel very humble and I was very brave. It was kind of her, but bravery doesn't come into it - I'm very passive and just let them get on with it.
Then the dressing was taken off to look at the arm. There was a swelling near the site and my hand was a bit swollen, so the Registrar came to have a look. It was finally decided that I should have a Doppler scan to see if there were any clots in the arm. The form was duly faxed off and we waited to see what time my appointment would be.
In the meantime, my hand was put in a bowl of warm water to fatten the veins up a bit before the nurse attempted to go in on the outside back of my wrist. Butterfly needle, only slight sting and she got in first time! 3 vials were slowly filled, so not an entirely wasted visit.
There were also calls to the radiologist who put the line in originally. She reluctantly agreed to have a look and maybe put some dye in to see if there was any blockage. She suggested Karen try and pull the line out slightly and then try again, in case it was sitting against the vein wall. This meant taking the statlock dressing off! Ouch!! A new statlock was put back on, but, as the line had been moved slightly it managed to miss the sore bits. Just as well as they're looking really raw. Guess what? No luck, no blood.
Unfortunately the Radiologist couldn't see me until the next day and as we hadn't heard from vascular studies, it was decided to let us go home and to come back the next day at 11:00. This was about 16:45 and we'd arrived at 14:00. There's a lot of hanging around in hospitals!
So, today (Thursday), we arrived at 11:00. Fiona (assistant practitioner) was dealing with it today in Karen's absence. She rang vascular studies to be told the only appointment they could give me was tomorrow at 10:00. This had a knock on effect on the PICC line tests. The Registrar didn't want to have the line disturbed without finding out if the arm had a clot or not. She also rang vascular studies, but was told it was only a trainee on today - she had a long list and wasn't very confident. Various phone calls were made to the radiologist again, who was undertaking a tricky procedure and would get back to Fiona. So we waited and we waited and we waited. Reminder calls were made, but nothing. In the end, around 12:30, Fiona said to go home - it didn't seem likely that they would agree to seeing me without the Doppler scan being done first anyway. That was that. Sod it! Home, pick up boys and then out for lunch!!
We have to go back tomorrow for a scan at 10:00 and then back to the chemo suite. Then, depending on the results of the scan, we'll go to see the radiologist and have some dye injected into the line before they decide if I can have chemo tomorrow as scheduled. If not, then it may have to be delayed until next week (hopefully Monday). It seems this next round of chemo (Docetaxel) takes a little longer for the first treatment - we have to wait an hour after. If, tomorrow, the line is completely knacked then I may have to have it taken out and a Hickman line put in, but that has to be inserted in theatre and I have to wait for a slot. If this happens my chemo will be late, which means that Christmas may not be quite as lovely a time as I was hoping for.
Got it????? No, I'm not sure I have either. It seems that the Registrar and the Radiologist aren't that bothered, but the chemo sister is. Karen would rather have a better idea of what's going on, rather than putting chemo in a line that might not be performing well. It seems the only problem is not getting blood out of it. Anything that's injected into it seems to go in ok, so I can see why they're thinking of leaving it alone. On the other hand, the blood was very thick and gloopy yesterday, so what's going on there? There's also the faff of not getting any decent veins for bloods - that seems a bit hit and miss and I usually end up looking like a pin cushion (a cushion that's lost its cush as Vaughan says!). AND, there's still 3 more treatments to go!! Feel a bit dejected really and also not sure what's going to happen tomorrow. Never thought I'd hear myself say it, but I WANT chemo tomorrow. I don't want to put it off.
Poor Mum's on standby. Although, she may come up tomorrow evening anyway - chemo or not. She's made lasagnes, cottage pies etc and they can't go to waste now, can they?!
On a lighter note - I've ordered another bra! This one's called Rita!!!! Sorry Auntie Ritas (no, not poor grammar - there are 2 of them), it's not sexy and sophisticated, but it looks better than the 1950's effort in M&S. Having said that, if the 1950's one made me look like Christina Hendricks (Joan) in Mad Men, then it may be worth a try! No..........I think you're right...........I've got no chance, I'd better stick with Frances, Nora and hopefully Rita!
Sunday, 24 October 2010
I've been doing a lot more at this stage than I have previously, which is good and makes me feel like I have a decent spell of "wellness" before the next round of chemo.
Wednesday, I went for lunch with Gaynor and Catherine. We talked about work and it was brilliant. So many things have been put on hold since this crappy cancer came and knocked me out, but lots to look forward to when I get back.
That evening Chris and I went along to school to watch Adam perform his monologue in a GCSE Drama production. It was busy, loud and should probably have been staged in a bigger room, but Adam did well and I'm glad I went.
Thursday saw my baby girl pass her driving test. She was so nervous in the 24 hours beforehand that I did wonder if they would get the better of her. Within minutes of her passing though, I had her screaming down the phone at me "I PASSED!" So pleased for her (not so sure about other road users, but hey!). She really needed something positive to happen to her. She not very optimistic about her life at the moment. This of course meant that as soon as she got home she jumped into the Micra and was off for the rest of the day (hi Liv, bye Liv!). It also meant that as she wasn't home in time for me to have the car, she had to pick the boys up from school. I wasn't too comfortable with this, but they told me (yes, I did grill them when they got home!) that she drove quite well.
Whilst Liv was getting her own grilling from the driving examiner, I had a visit from H and Jessica. My god she's putting on weight - it's all those chocs, H!! No, only joking, I mean Jess (H doesn't look like she's even had a baby!). We had a good natter, only punctuated by me ringing the insurance company to advise them Liv had passed and them advising me that there's a £600 excess for her in the event of an accident!! Not sure the cars even worth that much!
Friday saw the arrival of DadD and Heather. They arrived just after the District Nurse, so they and the boys relegated themselves to the kitchen while Kay flushed my line, changed the statlock and tried to get blood out of a stone! No change on the blood front - well not from the vein anyway. There was blood, however, when she took the statlock off. It seems my skin is now reacting to the adhesive on that now too. If you remember, the statlock is there to keep the PICC line in place. The line is attached to a couple of pins on the statlock, which is then stuck on the arm for stability. So, red, sore and bleeding, the new statlock was stuck back on..........in the same place. It has to be really, because the line daren't be moved. Needless to say, I'm not looking forward to it being changed next Friday! I'm really not sure what else can be used but at this rate I'll need a bloody skin graft when it's been taken off!! I will ask next Wednesday at the Chemo Suite, though. I can't be the only one who has skin reactions to these things, surely?
It felt very much like a Saturday, which was why we forgot Adam was due to have a lift at 17:30 to Futsal in Swindon! Neither he nor Chris had eaten anything when at 17:30 Adam cried "FUTSAL!". This meant Chris had to take him. Luckily he wasn't hungry and Adam had baps in the car on the way there. Happily, the team won 12 - 8 and Chris had an Indian meal waiting for him on his return!
Saturday and Chris had a lie in for a change. Liv was working 06:30 - 14:30 but drove herself there and back - woohoo, result! We had a lazy morning and after she got home, we all trooped into Bath. A tiny bit of window shopping (post surgery bras at M&S that look like something out of the '50s - absolutely no way!) and then a Chinese meal at the Ocean Pearl, which everyone enjoyed. I was able to enjoy this one more than last time (Vaughan's birthday), as I was feeling much better than I did then.
DadD and Heather came round for a last coffee with us this morning before heading back to Lincolnshire.
I have a couple of additions too on the hat front. DadD and Heather bought a hat, scarf and gloves set (pic to follow - when I have make up on!) and also a sleep hat for me. Night times are getting colder and so too is my head! The first night I wore it, I turned over and it ended up over my eyes! Not a bad thing as it happens, as it will act as a shade if I need to go to bed during the day.
Finally, the promised picture of me in the suburban turban hat (I've ordered another colour, as I love it so much) and one of the lippy's I bought!
Wednesday, I went for lunch with Gaynor and Catherine. We talked about work and it was brilliant. So many things have been put on hold since this crappy cancer came and knocked me out, but lots to look forward to when I get back.
That evening Chris and I went along to school to watch Adam perform his monologue in a GCSE Drama production. It was busy, loud and should probably have been staged in a bigger room, but Adam did well and I'm glad I went.
Thursday saw my baby girl pass her driving test. She was so nervous in the 24 hours beforehand that I did wonder if they would get the better of her. Within minutes of her passing though, I had her screaming down the phone at me "I PASSED!" So pleased for her (not so sure about other road users, but hey!). She really needed something positive to happen to her. She not very optimistic about her life at the moment. This of course meant that as soon as she got home she jumped into the Micra and was off for the rest of the day (hi Liv, bye Liv!). It also meant that as she wasn't home in time for me to have the car, she had to pick the boys up from school. I wasn't too comfortable with this, but they told me (yes, I did grill them when they got home!) that she drove quite well.
Whilst Liv was getting her own grilling from the driving examiner, I had a visit from H and Jessica. My god she's putting on weight - it's all those chocs, H!! No, only joking, I mean Jess (H doesn't look like she's even had a baby!). We had a good natter, only punctuated by me ringing the insurance company to advise them Liv had passed and them advising me that there's a £600 excess for her in the event of an accident!! Not sure the cars even worth that much!
Friday saw the arrival of DadD and Heather. They arrived just after the District Nurse, so they and the boys relegated themselves to the kitchen while Kay flushed my line, changed the statlock and tried to get blood out of a stone! No change on the blood front - well not from the vein anyway. There was blood, however, when she took the statlock off. It seems my skin is now reacting to the adhesive on that now too. If you remember, the statlock is there to keep the PICC line in place. The line is attached to a couple of pins on the statlock, which is then stuck on the arm for stability. So, red, sore and bleeding, the new statlock was stuck back on..........in the same place. It has to be really, because the line daren't be moved. Needless to say, I'm not looking forward to it being changed next Friday! I'm really not sure what else can be used but at this rate I'll need a bloody skin graft when it's been taken off!! I will ask next Wednesday at the Chemo Suite, though. I can't be the only one who has skin reactions to these things, surely?
It felt very much like a Saturday, which was why we forgot Adam was due to have a lift at 17:30 to Futsal in Swindon! Neither he nor Chris had eaten anything when at 17:30 Adam cried "FUTSAL!". This meant Chris had to take him. Luckily he wasn't hungry and Adam had baps in the car on the way there. Happily, the team won 12 - 8 and Chris had an Indian meal waiting for him on his return!
Saturday and Chris had a lie in for a change. Liv was working 06:30 - 14:30 but drove herself there and back - woohoo, result! We had a lazy morning and after she got home, we all trooped into Bath. A tiny bit of window shopping (post surgery bras at M&S that look like something out of the '50s - absolutely no way!) and then a Chinese meal at the Ocean Pearl, which everyone enjoyed. I was able to enjoy this one more than last time (Vaughan's birthday), as I was feeling much better than I did then.
DadD and Heather came round for a last coffee with us this morning before heading back to Lincolnshire.
I have a couple of additions too on the hat front. DadD and Heather bought a hat, scarf and gloves set (pic to follow - when I have make up on!) and also a sleep hat for me. Night times are getting colder and so too is my head! The first night I wore it, I turned over and it ended up over my eyes! Not a bad thing as it happens, as it will act as a shade if I need to go to bed during the day.
Finally, the promised picture of me in the suburban turban hat (I've ordered another colour, as I love it so much) and one of the lippy's I bought!
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