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!
Sunday, 26 December 2010
Sunday, 19 December 2010
Things on my mind
I'm coming out of the chemo fog finally. I don't think it's quite hit me yet that I won't have to feel like that again (well, fingers crossed anyway). No, I've had other things on my mind.
After we saw the Oncologist and talked about the prognosis, Chris and I had different interpretations of what he'd said, so I decided to look it up on the internet (I know - fatal mistake). It turns out, my interpretation was correct, but the statistics I saw on the internet were a lot different from what the Oncologist had quoted. Yes, it's a UK site and a reputable one too - http://www.cancerhelp.org.uk/type/breast-cancer/treatment/statistics-and-outlook-for-breast-cancer#large - if you want to check! According to this, the size (one was 1.5cm and the other 2.6cm) and grade (grade 2 - only 3 grades) of my tumours and the fact they were in 6/17 lymph nodes says that I only have 30 - 50% chance of living to the 10 year mark. Chris thinks I'm wrong, that the consultant wouldn't have told me 70% if it wasn't true. He had to have a quick look at my notes, though, when I asked him the question and it was just a quick look. I don't think it registered with him that it was an intermediate grade.
Now, what to do with this news? Well, being me, I cried. All my thoughts of my future, hopes and dreams have been put in doubt (to be honest, I had these tears when I was diagnosed, not just now). Have I got a future? Well, yes, actually I have - I just don't know how long, but then none of us do. It's taking a while to get my head around this. The upshot is, though, I can't do anything about it. So why get stressed out? Mum says that once I get out of this cancer bubble and get back to my normal day to day life, this will be pushed to the back of my mind and I'll just get on with things. She's right of course, I can't do anything else. There's also the fact that I may be one of the 30 - 50% that reach the 10 year mark.
So there we are, that's what's primarily been on my mind this week. That, the side effects and life that goes on around me during the week after chemo.
This has included Liv's relationship ending, again (not her choice, so lots of tears). Lots and lots of snow and ice and the kids finishing school and college for the Christmas break. Talking of Christmas, we haven't got any decorations up yet, will have to sort that out this week I suppose! This is the week too that I'm paranoid about catching some bug or germ that'll put me back in hospital. There's plenty going about at the moment. A couple of the community nurses have been struck down and haven't been round to see me for a while. I can't put myself in isolation, this week of all weeks - too much to sort out still! I'll have to take Mary's (the district nurse who retired) advice and sniff a hanky with a few drops of tea tree oil on it to ward away infections.
Chris has also finished until after Christmas, so he's around to help out with the preparations. It's nice to have him around, although, at the moment he thinks he may be coming down with something!
Mum had to go back on Thursday because of the weather forecast, so her visit was cut short again. I can't believe that's the last time she'll be coming up for a while. I cannot begin to express how grateful we are to her. Naturally, I haven't been able to express it to her yet without becoming a blubbering mess. She has given up her own life selflessly each chemo cycle to become part of ours, looking after us and giving us all the love and support we need. As Chris said in his blog, we cannot thank her enough (yes, I'm a blubbering mess at the moment!). She's one in a million, I love her soooooooo much and don't know what I'd do without her (can't see what I'm typing now!). My Dad also has had to do without each time she came up, but has managed brilliantly and I'm very grateful to him too. He's never complained once and just accepted it as the done thing. So, it's thanks to both of you. (CHRIS! More tissues................!).
After we saw the Oncologist and talked about the prognosis, Chris and I had different interpretations of what he'd said, so I decided to look it up on the internet (I know - fatal mistake). It turns out, my interpretation was correct, but the statistics I saw on the internet were a lot different from what the Oncologist had quoted. Yes, it's a UK site and a reputable one too - http://www.cancerhelp.org.uk/type/breast-cancer/treatment/statistics-and-outlook-for-breast-cancer#large - if you want to check! According to this, the size (one was 1.5cm and the other 2.6cm) and grade (grade 2 - only 3 grades) of my tumours and the fact they were in 6/17 lymph nodes says that I only have 30 - 50% chance of living to the 10 year mark. Chris thinks I'm wrong, that the consultant wouldn't have told me 70% if it wasn't true. He had to have a quick look at my notes, though, when I asked him the question and it was just a quick look. I don't think it registered with him that it was an intermediate grade.
Now, what to do with this news? Well, being me, I cried. All my thoughts of my future, hopes and dreams have been put in doubt (to be honest, I had these tears when I was diagnosed, not just now). Have I got a future? Well, yes, actually I have - I just don't know how long, but then none of us do. It's taking a while to get my head around this. The upshot is, though, I can't do anything about it. So why get stressed out? Mum says that once I get out of this cancer bubble and get back to my normal day to day life, this will be pushed to the back of my mind and I'll just get on with things. She's right of course, I can't do anything else. There's also the fact that I may be one of the 30 - 50% that reach the 10 year mark.
So there we are, that's what's primarily been on my mind this week. That, the side effects and life that goes on around me during the week after chemo.
This has included Liv's relationship ending, again (not her choice, so lots of tears). Lots and lots of snow and ice and the kids finishing school and college for the Christmas break. Talking of Christmas, we haven't got any decorations up yet, will have to sort that out this week I suppose! This is the week too that I'm paranoid about catching some bug or germ that'll put me back in hospital. There's plenty going about at the moment. A couple of the community nurses have been struck down and haven't been round to see me for a while. I can't put myself in isolation, this week of all weeks - too much to sort out still! I'll have to take Mary's (the district nurse who retired) advice and sniff a hanky with a few drops of tea tree oil on it to ward away infections.
Chris has also finished until after Christmas, so he's around to help out with the preparations. It's nice to have him around, although, at the moment he thinks he may be coming down with something!
Mum had to go back on Thursday because of the weather forecast, so her visit was cut short again. I can't believe that's the last time she'll be coming up for a while. I cannot begin to express how grateful we are to her. Naturally, I haven't been able to express it to her yet without becoming a blubbering mess. She has given up her own life selflessly each chemo cycle to become part of ours, looking after us and giving us all the love and support we need. As Chris said in his blog, we cannot thank her enough (yes, I'm a blubbering mess at the moment!). She's one in a million, I love her soooooooo much and don't know what I'd do without her (can't see what I'm typing now!). My Dad also has had to do without each time she came up, but has managed brilliantly and I'm very grateful to him too. He's never complained once and just accepted it as the done thing. So, it's thanks to both of you. (CHRIS! More tissues................!).
Friday, 10 December 2010
Chemo #6 - last one!
OK, first things first - the Oncologist's visit. I wasn't looking forward to going really. I think it was the thought that a couple of days later I'd be having another dose of chemo. Strange really, I felt a bit queasy. Whilst we were waiting, the radiotherapy patients were told that one of the machines had broken down and they weren't expecting it back that day. So all non urgent patients were told to go home and they'd have their missed appointment tagged onto the end of their treatment. Those patients that needed to have their session that day, had a 2 hour wait in front of them. Can't be helped, but I hope it doesn't happen to me when my time comes.
Dr Newman, the Oncologist is lovely. He reminds me of one of the doctors at work (ha ha no names!). He's very patient and talked me through my options. All my questions were answered:
1. How do they know the chemo etc. has worked?
They don't. Unfortunately there isn't a test they can do for breast cancer like there is for prostate cancer. They just have to follow the best treatments for the type of cancer based on guidelines, research and statistics.
2.How can they be sure that it's nowhere else in my body?
I told him that I still struggled with the fact that there is no body scan to see if it's elsewhere, even though I'm aware that they won't pick up any cancer cells or small tumours. Apparently they used to do them routinely but it was found that in the vast majority of cases everything was fine. So now they only do them if there are symptoms. However, he was happy to book me in for one in February, if it put my mind at rest - so I said yes please.
3.I want to know what the prognosis is after all the treatment has finished.
For my type of cancer that has spread to more than 4 of the lymph nodes, the prognosis is 70% survival rate after 10 years. He did say that everyone is unique and the same cancer can react differently in different people. Time will tell......
He's prescribed my Tamoxifen - hormone treatment (which should give me hot flushes). He also recommends that I stay on anti-coagulants for 3 months because of the blood clot. He gave me the choice of either going on Warfarin (regular blood tests at the GP surgery) or staying on Clexane (daily injections). So, it sounded like swings and roundabouts until he said that there would be an interaction between Warfarin and Tamoxifen and they'd have to keep a closer eye on me. So it looks like the Clexane injections win.
Today's chemo went according to plan. We were a little late, as there had been an accident on the bypass just down the road and we had to take a detour. We stopped off too to buy a card, tin of biscuits for the chemo team and a six pack of Irn-Bru (a giggle we'd had early on with a couple of Scottish nurses in reference to the red chemo) - just to say thank you. They booked me in to have my PICC line out on the 24th December. I asked if I'd have to go back to the same place that I'd had it put in, but Karen said no they whip it out there! Can't wait - proper shower Christmas day maybe!
On our way out, we bumped into G taking her son to the Orthodontist. It's the works Christmas do tonight and I'm missing it for the first time in years. I want all the juicy gossip and plenty of photos!! That'll keep me going through next week.
So, here we go again - waiting for the side effects to kick in. Difference this time though is that's it - after this time, no more waiting for the side effects to kick in - bliss.
Dr Newman, the Oncologist is lovely. He reminds me of one of the doctors at work (ha ha no names!). He's very patient and talked me through my options. All my questions were answered:
1. How do they know the chemo etc. has worked?
They don't. Unfortunately there isn't a test they can do for breast cancer like there is for prostate cancer. They just have to follow the best treatments for the type of cancer based on guidelines, research and statistics.
2.How can they be sure that it's nowhere else in my body?
I told him that I still struggled with the fact that there is no body scan to see if it's elsewhere, even though I'm aware that they won't pick up any cancer cells or small tumours. Apparently they used to do them routinely but it was found that in the vast majority of cases everything was fine. So now they only do them if there are symptoms. However, he was happy to book me in for one in February, if it put my mind at rest - so I said yes please.
3.I want to know what the prognosis is after all the treatment has finished.
For my type of cancer that has spread to more than 4 of the lymph nodes, the prognosis is 70% survival rate after 10 years. He did say that everyone is unique and the same cancer can react differently in different people. Time will tell......
He's prescribed my Tamoxifen - hormone treatment (which should give me hot flushes). He also recommends that I stay on anti-coagulants for 3 months because of the blood clot. He gave me the choice of either going on Warfarin (regular blood tests at the GP surgery) or staying on Clexane (daily injections). So, it sounded like swings and roundabouts until he said that there would be an interaction between Warfarin and Tamoxifen and they'd have to keep a closer eye on me. So it looks like the Clexane injections win.
Today's chemo went according to plan. We were a little late, as there had been an accident on the bypass just down the road and we had to take a detour. We stopped off too to buy a card, tin of biscuits for the chemo team and a six pack of Irn-Bru (a giggle we'd had early on with a couple of Scottish nurses in reference to the red chemo) - just to say thank you. They booked me in to have my PICC line out on the 24th December. I asked if I'd have to go back to the same place that I'd had it put in, but Karen said no they whip it out there! Can't wait - proper shower Christmas day maybe!
On our way out, we bumped into G taking her son to the Orthodontist. It's the works Christmas do tonight and I'm missing it for the first time in years. I want all the juicy gossip and plenty of photos!! That'll keep me going through next week.
So, here we go again - waiting for the side effects to kick in. Difference this time though is that's it - after this time, no more waiting for the side effects to kick in - bliss.
Tuesday, 7 December 2010
I'm still here
Sorry for not updating everyone. I think my state of mind didn't help - bit low after this last treatment.
The last week has been filled with weather watching. DadD and Heather were due down this weekend, but had been surrounded by snow and frozen pipes, so we weren't sure if they'd make it. I text them on Friday afternoon and said that it was better to be safe than sorry as the news had reported blocked roads etc. I got one back saying they were 10 miles from Chippenham! They weren't due until the Saturday, so this was indeed a surprise. They'd taken the chance whilst they could and booked in an extra night at the Travelodge.
This meant that it was all systems go on Saturday when they came to us (bearing gifts of mince pies to have with fresh coffee!). We had arranged to have our Christmas dinner with them over the weekend. As it had been touch and go as to them coming, I hadn't got the turkey etc. So Saturday was Christmas food shopping in Waitrose. Managed to get a frozen turkey which spent the night in the kitchen defrosting.
Sunday was spent clothes shopping for Adam's Duke of Edinburgh training expedition this coming weekend. A coat, waterproof trousers, winter hiking trousers, backpack and a whistle later...........! Then back home to start the Christmas dinner. I haven't cooked a big meal like that in ages and I think it showed. Everyone was very polite though and said they enjoyed it. I have to admit, I was knackered by Sunday night.
Liv was shopping on Saturday and back at work on Sunday (yaaaay!), so she didn't get to see our visitors for very long. We scheduled the Christmas dinner for after she finished work on Sunday, so at least she was around for that. I took pity on her on Monday and got up early (well early for me!) to take her to work. I needed the car to pick the boys up as Liv was working until 17:00.
I'd arranged to have lunch with Susie B and she very kindly took me for an Indian. Brrrrr, it was cold out, but a 3 course lunch warmed us up. We were the only ones in there, so had very attentive staff!
Today was line flushing day with the District Nurse. That went ok, no problems. Tomorrow I'm at the hospital to see the Oncologist and have bloods taken for Friday's chemo (hoping they may get blood from the PICC line - I've been on Clexane for a while now). I'll hopefully find out a bit about radiotherapy. I have a few questions too, such as how do they know the chemo has worked? How can they be sure that it's nowhere else in my body? I want to know what the prognosis is after all the treatment has finished. My half empty outlook on life is convinced that at some stage in my future this is going to raise it's ugly head again somewhere else. I just hope that it gives me a break so I can have a decent future.
Sorry, maudlin again! On a more positive note, my hair seems to be growing back - at least on my head anyway. No point in a photo as you can hardly see it. It's very downy and Chris and the kids like to stroke it - that's when I'm not wearing a hat 'cos it's cold! We can't quite work out the colour yet. There seems to be a mixture of dark and light (for light read grey!), but we'll see.
Although it's the last chemo on Friday, my heart still sinks when I think of having to go through it again, but go through it I will! Then, I'll be able to have a relaxing Christmas without the prospect of another chemo session - woohoo!
The last week has been filled with weather watching. DadD and Heather were due down this weekend, but had been surrounded by snow and frozen pipes, so we weren't sure if they'd make it. I text them on Friday afternoon and said that it was better to be safe than sorry as the news had reported blocked roads etc. I got one back saying they were 10 miles from Chippenham! They weren't due until the Saturday, so this was indeed a surprise. They'd taken the chance whilst they could and booked in an extra night at the Travelodge.
This meant that it was all systems go on Saturday when they came to us (bearing gifts of mince pies to have with fresh coffee!). We had arranged to have our Christmas dinner with them over the weekend. As it had been touch and go as to them coming, I hadn't got the turkey etc. So Saturday was Christmas food shopping in Waitrose. Managed to get a frozen turkey which spent the night in the kitchen defrosting.
Sunday was spent clothes shopping for Adam's Duke of Edinburgh training expedition this coming weekend. A coat, waterproof trousers, winter hiking trousers, backpack and a whistle later...........! Then back home to start the Christmas dinner. I haven't cooked a big meal like that in ages and I think it showed. Everyone was very polite though and said they enjoyed it. I have to admit, I was knackered by Sunday night.
Liv was shopping on Saturday and back at work on Sunday (yaaaay!), so she didn't get to see our visitors for very long. We scheduled the Christmas dinner for after she finished work on Sunday, so at least she was around for that. I took pity on her on Monday and got up early (well early for me!) to take her to work. I needed the car to pick the boys up as Liv was working until 17:00.
I'd arranged to have lunch with Susie B and she very kindly took me for an Indian. Brrrrr, it was cold out, but a 3 course lunch warmed us up. We were the only ones in there, so had very attentive staff!
Today was line flushing day with the District Nurse. That went ok, no problems. Tomorrow I'm at the hospital to see the Oncologist and have bloods taken for Friday's chemo (hoping they may get blood from the PICC line - I've been on Clexane for a while now). I'll hopefully find out a bit about radiotherapy. I have a few questions too, such as how do they know the chemo has worked? How can they be sure that it's nowhere else in my body? I want to know what the prognosis is after all the treatment has finished. My half empty outlook on life is convinced that at some stage in my future this is going to raise it's ugly head again somewhere else. I just hope that it gives me a break so I can have a decent future.
Sorry, maudlin again! On a more positive note, my hair seems to be growing back - at least on my head anyway. No point in a photo as you can hardly see it. It's very downy and Chris and the kids like to stroke it - that's when I'm not wearing a hat 'cos it's cold! We can't quite work out the colour yet. There seems to be a mixture of dark and light (for light read grey!), but we'll see.
Although it's the last chemo on Friday, my heart still sinks when I think of having to go through it again, but go through it I will! Then, I'll be able to have a relaxing Christmas without the prospect of another chemo session - woohoo!
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