Chemo #2 - 23 Feb 2018
Here's my starter for the next chemotherapy round. Again, i'll do day by day updates.
As a recap on the last couple of weeks, apologies if I have been quiet. This is mainly due to being back at work all of last and this week, so just being busy! Last week was punctuated with a spotty face and some loose nether regions, but otherwise normal. We had a day off yesterday, to take the caravan to the dealership for a service and warranty work, and to mooch around the caravan and camping show. Managed not to trade ours in (there was nothing we liked any better).
Hair loss
Last Sunday ("Day 17") my hair began to fall out more noticeably. Today is Day 21, and I can easily draw my fingers through my hair and offer you 20 strands. It doesn't hurt. I have thick hair, so no-one can tell but me. I suspect I may decide to shave it off in the next 7 days, though, as it may start shedding itself on everything and get annoying.
The day before
Thursday 22nd Feb - A normal day at work, but began with a breakfast of muesli and kefir so I could have my steroids on a full stomach. Have I talked about kefir yet? It is supposed to help with gut health, much more than probiotics do, and I'm tempted to start making my own... For now, i'm buying it from Waitrose. This time, I have 8mg of steroids at breakfast and another 8mg at lunchtime. Slight headache by the evening, but I did work late as I have planned a week at home next week and needed to prep some stuff for others to take on.
Planning to be ill
It is a very strange thing, planning to be ill. The main principle is that it is better to make everyone aware you might not be around, as there are less surprises, less people dropped in to stuff at the last minute, and less things not happening at short notice. But I still feel guilty that I might be OK. Might have been able to be there and do those things myself. People have been so kind, and I've delegated lots of things. I'm lucky there are great people to hand things to, but I can't help feeling a little bit guilty too.
The day of
Friday 23rd Feb - So, I awoke at 2am and couldn't get back to sleep. I think it is a combination of the steroids, but also underlying anxiety about the treatment to come, as it was the first thing on my mind when I woke. I got up at about 3am and came downstairs to read a magazine and get a glass of milk. Then back to bed at about 5.30am and had a little bit of a doze before getting up properly for some breakfast and steroids at around 8am. Shower and dog walk (Major the black lab joined us, with his wonky head and broken eye - but it was reassuring to see him, as I haven't spotted him for months), and then nagging Greg to get up so we could get to the hospital for my 11am appointment. We were 2 minutes late. Grr.
Sitting in the same chair as last time, the canula went in just fine, first time, and the Herceptin was administered to my left leg followed by just a 30 minute wait to make sure not allergic reaction to that. All was OK. However, they switched the line from saline to the docetaxel and once it had pumped 30mls down the line I had an instant allergic reaction to it, so it was aborted. I very quickly went hot, dizzy, short of breath and felt weird all over as soon as it touched me, and the nurses whipped the line away and administered extra steroids, antihistamines and oxygen straight away to stop it getting any worse. You could see they had done it before - 3 nurses all doing their jobs, super quick. I'm now on Piriton for a few days, which causes drowsiness - fighting it out with the steroids for now! - and I’ll have to go back to clinic on Wednesday to speak to the oncologist about next steps, but the nurses think we’ll try again next Friday but dose me up with the antihistamines ahead of the session this time.
It was quite scary, and I did shed a tear or two, and I'll be even more anxious about the next attempt now.
And on top of that, I'd cleared my week and prepared to be ill, and now - apart from not being able to drive because of piriton - I'll probably be OK this week, but aching next week! This chemo treatment is very unpredictable.
As we drove home, we had a phone call to say that the reported warranty work on the caravan and the annual service has been completed, and when could we collect the van. And on top of that, they've spotted some extra things that need to have claims put in, so they'll do that and we'll have to take it back in for those to be done. Claims to Elddis can take 8-12 weeks to approve. So we'll collect it tomorrow, as Greg can drive and I can sleep, and then - as we've got the van on the car anyway - we'll have a night away in the van tomorrow. Ludlow Touring Park, here we come!
Saturday 24th Feb - not up quite as early as I'd have liked, but we got away at 10am to fetch the caravan. All the warranty work has been done, and well done to the service technician for spotting the small crack on the front of it. Then on to Ludlow, which looks like a very new site, but perfect for a quite stop over. We didn't venture anyway, as we didn't arrive until nearly 4pm, and it was getting cold and dark. Good hard standing, though and fully serviced. Felt slow today. The piriton I guess. Washed my hair this morning but tons is now coming out. Will shave it tomorrow. Weighed myself and the steroids definitely don't help with weight loss! But then, the cheese and potato pie, and the coconut cream cake I ate yesterday won't have helped either!!
Sunday 25th Feb - On and off sleep, and woke to find the water on the caravan had frozen (Siberian winds and cold are coming our way!). There was just enough in the kettle for a cuppa, and in the tap for my teeth! Feel bloated and fat.
We finished the Scrabble game we'd started the night before (I won - a late spurt after a bad start), and then packed up and went home. Popped to Waitrose to get the weekly shop and stock up. The piriton is still making me very drowsy and slow. My hair/head is hurting in the wind, so I got Greg to shave it. I sat in the bath to capture it all as he got his beard trimmer on the job. I talked him out of trying to vacuum it off!! He did a great job, and I was OK with it, but did shed a tear or two. Not because of losing my hair as such, but just that it is such a tangible reminder of what is going on. I'm still annoyed that everything has been put back for a week too. I am starting to understand the temptation to hide away at home and just not go out for months on end. But I think its just a low day, not how i'll feel in a few days time.
I'll be working from home this week, because I can't drive on these antihistamines. And I'm not sure i'll exactly be firing on all cylinders anyway, so probably as well I can hide away a bit.
As a recap on the last couple of weeks, apologies if I have been quiet. This is mainly due to being back at work all of last and this week, so just being busy! Last week was punctuated with a spotty face and some loose nether regions, but otherwise normal. We had a day off yesterday, to take the caravan to the dealership for a service and warranty work, and to mooch around the caravan and camping show. Managed not to trade ours in (there was nothing we liked any better).
Hair loss
Last Sunday ("Day 17") my hair began to fall out more noticeably. Today is Day 21, and I can easily draw my fingers through my hair and offer you 20 strands. It doesn't hurt. I have thick hair, so no-one can tell but me. I suspect I may decide to shave it off in the next 7 days, though, as it may start shedding itself on everything and get annoying.
The day before
Thursday 22nd Feb - A normal day at work, but began with a breakfast of muesli and kefir so I could have my steroids on a full stomach. Have I talked about kefir yet? It is supposed to help with gut health, much more than probiotics do, and I'm tempted to start making my own... For now, i'm buying it from Waitrose. This time, I have 8mg of steroids at breakfast and another 8mg at lunchtime. Slight headache by the evening, but I did work late as I have planned a week at home next week and needed to prep some stuff for others to take on.
Planning to be ill
It is a very strange thing, planning to be ill. The main principle is that it is better to make everyone aware you might not be around, as there are less surprises, less people dropped in to stuff at the last minute, and less things not happening at short notice. But I still feel guilty that I might be OK. Might have been able to be there and do those things myself. People have been so kind, and I've delegated lots of things. I'm lucky there are great people to hand things to, but I can't help feeling a little bit guilty too.
The day of
Friday 23rd Feb - So, I awoke at 2am and couldn't get back to sleep. I think it is a combination of the steroids, but also underlying anxiety about the treatment to come, as it was the first thing on my mind when I woke. I got up at about 3am and came downstairs to read a magazine and get a glass of milk. Then back to bed at about 5.30am and had a little bit of a doze before getting up properly for some breakfast and steroids at around 8am. Shower and dog walk (Major the black lab joined us, with his wonky head and broken eye - but it was reassuring to see him, as I haven't spotted him for months), and then nagging Greg to get up so we could get to the hospital for my 11am appointment. We were 2 minutes late. Grr.Sitting in the same chair as last time, the canula went in just fine, first time, and the Herceptin was administered to my left leg followed by just a 30 minute wait to make sure not allergic reaction to that. All was OK. However, they switched the line from saline to the docetaxel and once it had pumped 30mls down the line I had an instant allergic reaction to it, so it was aborted. I very quickly went hot, dizzy, short of breath and felt weird all over as soon as it touched me, and the nurses whipped the line away and administered extra steroids, antihistamines and oxygen straight away to stop it getting any worse. You could see they had done it before - 3 nurses all doing their jobs, super quick. I'm now on Piriton for a few days, which causes drowsiness - fighting it out with the steroids for now! - and I’ll have to go back to clinic on Wednesday to speak to the oncologist about next steps, but the nurses think we’ll try again next Friday but dose me up with the antihistamines ahead of the session this time.
It was quite scary, and I did shed a tear or two, and I'll be even more anxious about the next attempt now.
And on top of that, I'd cleared my week and prepared to be ill, and now - apart from not being able to drive because of piriton - I'll probably be OK this week, but aching next week! This chemo treatment is very unpredictable.
As we drove home, we had a phone call to say that the reported warranty work on the caravan and the annual service has been completed, and when could we collect the van. And on top of that, they've spotted some extra things that need to have claims put in, so they'll do that and we'll have to take it back in for those to be done. Claims to Elddis can take 8-12 weeks to approve. So we'll collect it tomorrow, as Greg can drive and I can sleep, and then - as we've got the van on the car anyway - we'll have a night away in the van tomorrow. Ludlow Touring Park, here we come!
Saturday 24th Feb - not up quite as early as I'd have liked, but we got away at 10am to fetch the caravan. All the warranty work has been done, and well done to the service technician for spotting the small crack on the front of it. Then on to Ludlow, which looks like a very new site, but perfect for a quite stop over. We didn't venture anyway, as we didn't arrive until nearly 4pm, and it was getting cold and dark. Good hard standing, though and fully serviced. Felt slow today. The piriton I guess. Washed my hair this morning but tons is now coming out. Will shave it tomorrow. Weighed myself and the steroids definitely don't help with weight loss! But then, the cheese and potato pie, and the coconut cream cake I ate yesterday won't have helped either!!
We finished the Scrabble game we'd started the night before (I won - a late spurt after a bad start), and then packed up and went home. Popped to Waitrose to get the weekly shop and stock up. The piriton is still making me very drowsy and slow. My hair/head is hurting in the wind, so I got Greg to shave it. I sat in the bath to capture it all as he got his beard trimmer on the job. I talked him out of trying to vacuum it off!! He did a great job, and I was OK with it, but did shed a tear or two. Not because of losing my hair as such, but just that it is such a tangible reminder of what is going on. I'm still annoyed that everything has been put back for a week too. I am starting to understand the temptation to hide away at home and just not go out for months on end. But I think its just a low day, not how i'll feel in a few days time.
I'll be working from home this week, because I can't drive on these antihistamines. And I'm not sure i'll exactly be firing on all cylinders anyway, so probably as well I can hide away a bit.
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Monday 26th Feb - Didn't sleep so well, and the piriton still making me fuzzy, so got up slowly.
Walked Syd in the bright, chilly weather. The UK is forecast the 'Beast from the East' in terms of Siberian winds, but it won't get here until Tuesday eve at the earliest, most likely not until Thursday eve. Have done a little bit of work, but I'll be honest, I'm not at my most productive right now. Called the hospital and I'm booked into clinic tomorrow morning, so Greg has had to rearrange his day as we thought it would be Wednesday. Expecting to find out whether they'll try again this Friday (hopefully so!) and what extra meds I'll be on from here on. Have been wearing my woolly hat - my dog walking one - all day, but the house has finally warmed up now, so I'm off to put my PJs back on! Laters xx
Tuesday 27th Feb - Down at Velindre for 11am and clinic with nurse Tej. She spoke too fast, but essentially we gathered that they will try again this week but want to do future treatments at Velindre or one of the other major hospitals in case of another adverse reaction. They can't fit me in at Velindre, so I am now off to Merthyr Tydfil tomorrow at 10am. Tej said that having a reaction to the second treatment, especially as I have had docetaxel before, is typical. And that the reaction is to the carrier fluid, rather than the chemo itself. If I react again, they will try another mix, which is the same drug but in a different carrier fluid (Abraxane, I think). So I'm still super fuzzy from the piriton and need to continue that today, plus one tablet tomorrow. And I'm back on the steroids again today, and need to remember to drink lots to keep my veins going. I'm feeling fed up and anxious today. I'm back in bed to keep warm and to sulk a bit. The cats are crowding me out, but I can't complain.
The day of - again - Wednesday 28th Feb - So, up early and out to Merthyr Tydfil. A smattering of snow on the welsh hills, but nothing to stop us getting through. Parking at the Prince Charles Hospital was fairy dire, so Greg dropped me off while I found the Macmillan Unit and got checked in. Things were a bit delayed getting started, but I got my pre-meds at about 11:30 (10mg of IV piriton and some hydrocortisone), and the docetaxel was started just before 12:00. After approx 23mls, I had another reaction. I went hot and pink again. Not so fast or severe as last time, but I put my book down and looked around and found Greg looking at me from the waiting room, and the nurse (Claire) also looking. She came straight over and they took me off the chemo, back onto saline, and gave me more piriton and hydrocortisone. Rhiannyd (the clinical lead) placed calls with Dr Howe and Tej at Velindre, and they agreed we should not try again. I've had too much hydrocortisone for one day.
I've now just had a call back from Tej, and I am booked for next Wednesday 7th at 3pm to have the abraxane. This does NOT need piriton OR steroids as pre-loading, so this is fantastic news. Tej says she's never known anyone have a reaction to both drugs, just one or the other, so she is confident it will work. I've generally read that the abraxane is a more refined version, causes less side effects and allergic reactions with the exception of possibly more change of peripheral neuropathy (numbness in fingers and toes), so they'll keep a closer eye on that. This can be temporary - or permanent. But overall I am hopeful that it will actually make chemo a whole lot easier, so this whole delay is worth it in some ways, as the rest should and could be much simpler.
A couple more days of piriton wooziness to put up with, but the University has announced a closure on Friday anyway, so it doesn't feel so bad to be missing work. I hope my head should be clear and fine enough to go back next Monday.
On that note, I'll end this blog entry here and start again next week. Ending on a positive, I feel.
Tuesday 27th Feb - Down at Velindre for 11am and clinic with nurse Tej. She spoke too fast, but essentially we gathered that they will try again this week but want to do future treatments at Velindre or one of the other major hospitals in case of another adverse reaction. They can't fit me in at Velindre, so I am now off to Merthyr Tydfil tomorrow at 10am. Tej said that having a reaction to the second treatment, especially as I have had docetaxel before, is typical. And that the reaction is to the carrier fluid, rather than the chemo itself. If I react again, they will try another mix, which is the same drug but in a different carrier fluid (Abraxane, I think). So I'm still super fuzzy from the piriton and need to continue that today, plus one tablet tomorrow. And I'm back on the steroids again today, and need to remember to drink lots to keep my veins going. I'm feeling fed up and anxious today. I'm back in bed to keep warm and to sulk a bit. The cats are crowding me out, but I can't complain.
The day of - again - Wednesday 28th Feb - So, up early and out to Merthyr Tydfil. A smattering of snow on the welsh hills, but nothing to stop us getting through. Parking at the Prince Charles Hospital was fairy dire, so Greg dropped me off while I found the Macmillan Unit and got checked in. Things were a bit delayed getting started, but I got my pre-meds at about 11:30 (10mg of IV piriton and some hydrocortisone), and the docetaxel was started just before 12:00. After approx 23mls, I had another reaction. I went hot and pink again. Not so fast or severe as last time, but I put my book down and looked around and found Greg looking at me from the waiting room, and the nurse (Claire) also looking. She came straight over and they took me off the chemo, back onto saline, and gave me more piriton and hydrocortisone. Rhiannyd (the clinical lead) placed calls with Dr Howe and Tej at Velindre, and they agreed we should not try again. I've had too much hydrocortisone for one day.
I've now just had a call back from Tej, and I am booked for next Wednesday 7th at 3pm to have the abraxane. This does NOT need piriton OR steroids as pre-loading, so this is fantastic news. Tej says she's never known anyone have a reaction to both drugs, just one or the other, so she is confident it will work. I've generally read that the abraxane is a more refined version, causes less side effects and allergic reactions with the exception of possibly more change of peripheral neuropathy (numbness in fingers and toes), so they'll keep a closer eye on that. This can be temporary - or permanent. But overall I am hopeful that it will actually make chemo a whole lot easier, so this whole delay is worth it in some ways, as the rest should and could be much simpler.
A couple more days of piriton wooziness to put up with, but the University has announced a closure on Friday anyway, so it doesn't feel so bad to be missing work. I hope my head should be clear and fine enough to go back next Monday.
On that note, I'll end this blog entry here and start again next week. Ending on a positive, I feel.
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