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!
Saturday, 29 January 2011
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................!).
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