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.............
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