Chemo#3 - half way there! And kicking off radiotherapy
The Day Before - The usual clinics and apart from the usual 'how have you been? do you need any drugs to deal with symptoms?' questions, I also saw a lady about the next step, radiotherapy. I was pleasantly surprised by this, as I had wondered if I had to wait until I saw my surgeon again - and that appointment keeps getting put back.
She ran through the potential side effects. Soreness, blistering, tiredness that tends to be cumulative. Heart damage, lung scarring. Last time, I had just a plain chest wall on my right side zapped and 15 treatments, so apart from getting a square suntanned section, really didn't have any problems. This time, I have a breast, a nipple, and a heart for them to work around. If they can't avoid the heart area, they'll make me breathe in and hold my breath during the treatment as this makes more distance between the zaps and the heart. That's the most worrying thing, especially as the herceptin can also damage your heart, and did do so last time. But hopefully the perindopril tablets I've been on since then will protect me a little.
My CT scan to line me up and tattoo me is on 11th April. They will try and find and use my previous tattoos - good luck with that! They were so small last time I haven't spotted them since! It is a real precision task. The treatment - 3 weeks of daily treatment over a wider area, plus 5 boosts (stronger zaps on an area targeted at where the lump came out) - will start 3-4 weeks after my last chemotherapy, which means early to mid May. I've asked for the latest appointments they can offer, but will have to think about the logistics of this. I suspect I may end up working from home during this stage of treatment, as getting to and from Bristol, Cardiff and home everyday is going to be a challenge. I may have to rope in some friends and favours to help Greg with all the driving. I'd like to take myself for the first week at least... will he let me? Last time, I didn't get tired at all, but it is 8 years on now, and who knows. We'll cross that bridge in a few weeks time.
Day 1, Wednesday 28th March - So today chemo number 3 was successfully delivered! As I had an appointment with medical genetics in the morning at The Heath hospital in Cardiff, we stayed in town and had some lunch at Las Iguanas in Cardiff Bay.
My herceptin was delivered into my right thigh first, which stung as it went in, but was fine after that. The nurse hadn't realised I was there for chemo as well, as the two treatments seemed to be on different appointment lists. This was probably because my herceptin appointment was moved from the 16th March at late notice. I turned up at Nevill Hall on the 16th, only to be told I wasn't needed. I'd phoned the bookings line that morning to check the appointment time, so it was a bit of a wasted journey! Oh well, I needed to do some shopping anyway...
All went just fine, and some lovely volunteer ladies even gave us a little Easter chick with a Cadbury's creme egg inside. Bless.
The cannula was inserted without problem, and the abraxane delivered smoothly. I asked why it was faster than the docetaxel, and it is partly because there is less of it, but mainly because it is kinder to you, so can be delivered at a faster speed. The docetaxel causes issues, so they slow it down. So abraxane is better in so many ways.
The nurse complimented me on my hair, not realising it was a wig. So if a chemo nurse, who sees wigs every day couldn't tell, I'm not doing too badly! In turn, we entertained the nurses with a photo of Sydney in my old wig. They loved it, and new nurses kept coming over to have a look! We'll need to send them a thank you card with that photo on it!
I did feel a little bit nauseous when we drove home again. I think this is the abraxane causing this, not just Greg's driving. I'm also suffering more with hot flushes at the moment, so a hot car - and the sun was shining again - really doesn't help.
Feeling guilty...
I've been feeling physically very well recently, so yes, I am feeling a little bit guilty about being off work. I'm enjoying not being at work, and that feels wrong. But it isn't just the physical symptoms of my treatment that I need to consider, but the mental challenge too. Not having to think about, worry about work, not having to consider travelling to Bristol every day, not worrying about whether I'll have to rearrange all my meetings. The opportunity to fully focus on getting well and getting through this is a huge thing, and I'm starting to appreciate that. So I do feel a bit guilty, but I do still think it is the right thing to do.
The day after - Thursday 29th March
As before, this is a Good Day, and I walked Sydney and all was good. In the morning anyway! We had a productive day - I ordered the sink I wanted, and Greg sorted his tent for his motorbike trip. I also sorted those mundane things like car and caravan insurance, and got a provisional date for getting the new worktops fitted (<<Mirostone Cosmic Gold). As Greg's tent was collection only, and the nearest stockist in Wednesbury, and my sink could be collected from Bromsgrove, we went for a road trip to Brum and collected them both. Half way there, I started getting stomach cramps. This has been a regular side effect of the chemo and anti-sickness tablets, but normally I am at home and in my PJs so can get comfy, and it hasn't started so soon before. I was quite uncomfortable, and after we got home, tucked myself up with a hot water bottle. I had forgotten to take the stronger anti-sickness tablet (ondansetron) in the morning, so I think that was the cause. I took it when I got home, and also gave myself my lipegfilgrastim injection, and later in the evening felt a lot more normal and less nauseous. I even managed some of Greg's lovely goat curry!
Friday 30th March - woke early - 4.30am - but managed to get back to sleep for another couple of hours. Stiff/aching in my shoulders and hips so Greg walked Sydney and I'm back on the ibuprofen/paracetamol mix. I also took an extra ondansetron tablet today, after yesterday's tummy aches. We then did the shopping, slowly, due to me and the million other people in Waitrose. And collected my car from the garage, where it had had its service yesterday. Since then, as I'm feeling a bit slow today, I have been crocheting. I am making a toy for myself for the first time (I usually give them away) - my very own Sydney replica, in the style of the other Toft animals I make. I shall reveal when he is finished. Greg decided it was too wet to do gardening, so has been sorting out the junk in our office. Years of dead electrical equipment and empty boxes of things we might need again one day. I am wondering if the boxes he has 'cleared out' will get any further than the living room, where he's currently dumped them...!!! So, a bit aching and slow, but not too bad. Being comfy on the sofa helps.
Saturday 31st March - woke feeling incredibly stiff and aching. Definitely the worst the aches have been, and although I did eventually get up and shower, I got into a clean set of pyjamas and had a sofa day. I knew I wouldn't be able to do much, and basically just tottered from lounge to kitchen a few times. I do allow myself a day or so like this, but honestly, by the end of the day I was so fed up with it. I kept up the paracetamol/ibuprofen combo all day, but the pain didn't really let up. I finished my Sydney replica, and attempted to start a new hat, but was too tired so it got taken apart 3 times before I just gave up. Greg's gardening was thwarted by the weather again, but he replaced all of the under-kitchen-cupboard lights so we can actually see to cook now!
Sunday 1st April - Happy Easter and April Fool's Day! I took some Night Nurse last night, hoping to be knocked out and wake without any leg pain. It didn't quite work, but I did get some sleep. I also took some Dulcolax yesterday, trying something different from the Senokot, and think it is a tad stronger so I had to get up in the night to 'sort it out' as it were! Still in pain, mainly in my legs and knees, today. I have sent Greg out to get me some cocodamol as I think I need something stronger to sort this pain out, although I expect it to be more or less gone tomorrow. This pain is worse than it has been before. I guess the first treatment was the first, so I started from a healthy baseline. The second had had a longer break since the first, due to all those allergic reactions. This third is on time so despite me feeling well beforehand, the cumulative effect is probably starting. But, only one more treatment to go. That's the thing to focus on.
Monday 2nd April - slept much better and kept on the cocodamol today, but still didn't feel quite strong enough to do any housework or anything strenuous. I did manage to do a slow walk with Sydney, and to sort out our weekend away with friends. We want to go to the River Exe Cafe and plan to stay at Cofton campsite, which is a short walk away from Cockwood, Starcross and Dawlish Warren. It's a site we've stayed at before, and we're regular visitors to The Anchor Inn as they always serve Greg's favourite Otter Ale. It is good to look forward to something. I don't feel I can plan a proper holiday, as we just don't know for sure when all of this treatment will be done. I'm expecting more surgery (ovary removal) after the radiotherapy, but when, I'm not sure. I half it expect it not to be long, as they'll want to get me on one of the aromatase inhibitors as soon as possible. So today, I've felt a bit sad about only having hospital appointments to look forward to.
Tuesday 3rd April - Greg went back to work, and if I had been at work, today would have been a 'closure day' anyway. UWE give us an extra one - lucky us! I wanted to avoid taking any painkillers today, and made it to 3pm before I felt I needed them. Perhaps too soon. It is Day 7 of the cycle, and again, I'm getting kidney/back pain. Same thing as happened before. I'm also really bloated and have a painful tummy. Sydney and I had a slow walk and he was good for me, but I was really glad that out dog walkers came and took him out for a proper run. He chased a fox, apparently! I'm just not feeling up to doing anything much with him right now. Brain is a bit incoherent today so although I thought I might be able to process a few work emails when I woke, I really wasn't able to focus enough later in the day.
Finishing up this entry, I was still grumpy and uncomfortable on the Wednesday, but started to feel better by Thursday. Sleeping better really helps, and being able to walk Sydney without feeling any pain or discomfort also helps. It makes me feel a bit more useful and positive, and I can focus better on things.
She ran through the potential side effects. Soreness, blistering, tiredness that tends to be cumulative. Heart damage, lung scarring. Last time, I had just a plain chest wall on my right side zapped and 15 treatments, so apart from getting a square suntanned section, really didn't have any problems. This time, I have a breast, a nipple, and a heart for them to work around. If they can't avoid the heart area, they'll make me breathe in and hold my breath during the treatment as this makes more distance between the zaps and the heart. That's the most worrying thing, especially as the herceptin can also damage your heart, and did do so last time. But hopefully the perindopril tablets I've been on since then will protect me a little.
My CT scan to line me up and tattoo me is on 11th April. They will try and find and use my previous tattoos - good luck with that! They were so small last time I haven't spotted them since! It is a real precision task. The treatment - 3 weeks of daily treatment over a wider area, plus 5 boosts (stronger zaps on an area targeted at where the lump came out) - will start 3-4 weeks after my last chemotherapy, which means early to mid May. I've asked for the latest appointments they can offer, but will have to think about the logistics of this. I suspect I may end up working from home during this stage of treatment, as getting to and from Bristol, Cardiff and home everyday is going to be a challenge. I may have to rope in some friends and favours to help Greg with all the driving. I'd like to take myself for the first week at least... will he let me? Last time, I didn't get tired at all, but it is 8 years on now, and who knows. We'll cross that bridge in a few weeks time.
My herceptin was delivered into my right thigh first, which stung as it went in, but was fine after that. The nurse hadn't realised I was there for chemo as well, as the two treatments seemed to be on different appointment lists. This was probably because my herceptin appointment was moved from the 16th March at late notice. I turned up at Nevill Hall on the 16th, only to be told I wasn't needed. I'd phoned the bookings line that morning to check the appointment time, so it was a bit of a wasted journey! Oh well, I needed to do some shopping anyway...All went just fine, and some lovely volunteer ladies even gave us a little Easter chick with a Cadbury's creme egg inside. Bless.
The cannula was inserted without problem, and the abraxane delivered smoothly. I asked why it was faster than the docetaxel, and it is partly because there is less of it, but mainly because it is kinder to you, so can be delivered at a faster speed. The docetaxel causes issues, so they slow it down. So abraxane is better in so many ways.
The nurse complimented me on my hair, not realising it was a wig. So if a chemo nurse, who sees wigs every day couldn't tell, I'm not doing too badly! In turn, we entertained the nurses with a photo of Sydney in my old wig. They loved it, and new nurses kept coming over to have a look! We'll need to send them a thank you card with that photo on it!I did feel a little bit nauseous when we drove home again. I think this is the abraxane causing this, not just Greg's driving. I'm also suffering more with hot flushes at the moment, so a hot car - and the sun was shining again - really doesn't help.
Feeling guilty...
I've been feeling physically very well recently, so yes, I am feeling a little bit guilty about being off work. I'm enjoying not being at work, and that feels wrong. But it isn't just the physical symptoms of my treatment that I need to consider, but the mental challenge too. Not having to think about, worry about work, not having to consider travelling to Bristol every day, not worrying about whether I'll have to rearrange all my meetings. The opportunity to fully focus on getting well and getting through this is a huge thing, and I'm starting to appreciate that. So I do feel a bit guilty, but I do still think it is the right thing to do.
The day after - Thursday 29th March
Friday 30th March - woke early - 4.30am - but managed to get back to sleep for another couple of hours. Stiff/aching in my shoulders and hips so Greg walked Sydney and I'm back on the ibuprofen/paracetamol mix. I also took an extra ondansetron tablet today, after yesterday's tummy aches. We then did the shopping, slowly, due to me and the million other people in Waitrose. And collected my car from the garage, where it had had its service yesterday. Since then, as I'm feeling a bit slow today, I have been crocheting. I am making a toy for myself for the first time (I usually give them away) - my very own Sydney replica, in the style of the other Toft animals I make. I shall reveal when he is finished. Greg decided it was too wet to do gardening, so has been sorting out the junk in our office. Years of dead electrical equipment and empty boxes of things we might need again one day. I am wondering if the boxes he has 'cleared out' will get any further than the living room, where he's currently dumped them...!!! So, a bit aching and slow, but not too bad. Being comfy on the sofa helps.
Sunday 1st April - Happy Easter and April Fool's Day! I took some Night Nurse last night, hoping to be knocked out and wake without any leg pain. It didn't quite work, but I did get some sleep. I also took some Dulcolax yesterday, trying something different from the Senokot, and think it is a tad stronger so I had to get up in the night to 'sort it out' as it were! Still in pain, mainly in my legs and knees, today. I have sent Greg out to get me some cocodamol as I think I need something stronger to sort this pain out, although I expect it to be more or less gone tomorrow. This pain is worse than it has been before. I guess the first treatment was the first, so I started from a healthy baseline. The second had had a longer break since the first, due to all those allergic reactions. This third is on time so despite me feeling well beforehand, the cumulative effect is probably starting. But, only one more treatment to go. That's the thing to focus on.
Monday 2nd April - slept much better and kept on the cocodamol today, but still didn't feel quite strong enough to do any housework or anything strenuous. I did manage to do a slow walk with Sydney, and to sort out our weekend away with friends. We want to go to the River Exe Cafe and plan to stay at Cofton campsite, which is a short walk away from Cockwood, Starcross and Dawlish Warren. It's a site we've stayed at before, and we're regular visitors to The Anchor Inn as they always serve Greg's favourite Otter Ale. It is good to look forward to something. I don't feel I can plan a proper holiday, as we just don't know for sure when all of this treatment will be done. I'm expecting more surgery (ovary removal) after the radiotherapy, but when, I'm not sure. I half it expect it not to be long, as they'll want to get me on one of the aromatase inhibitors as soon as possible. So today, I've felt a bit sad about only having hospital appointments to look forward to.
Tuesday 3rd April - Greg went back to work, and if I had been at work, today would have been a 'closure day' anyway. UWE give us an extra one - lucky us! I wanted to avoid taking any painkillers today, and made it to 3pm before I felt I needed them. Perhaps too soon. It is Day 7 of the cycle, and again, I'm getting kidney/back pain. Same thing as happened before. I'm also really bloated and have a painful tummy. Sydney and I had a slow walk and he was good for me, but I was really glad that out dog walkers came and took him out for a proper run. He chased a fox, apparently! I'm just not feeling up to doing anything much with him right now. Brain is a bit incoherent today so although I thought I might be able to process a few work emails when I woke, I really wasn't able to focus enough later in the day.
Finishing up this entry, I was still grumpy and uncomfortable on the Wednesday, but started to feel better by Thursday. Sleeping better really helps, and being able to walk Sydney without feeling any pain or discomfort also helps. It makes me feel a bit more useful and positive, and I can focus better on things.
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