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!
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