Cycle 2 - hair today, gone tomorrow
So yesterday was cycle 2.
The run up to the cycle has been remarkably uneventful and for that I'm grateful. We had a lovely Christmas in the Lakes with our good friends, Claire and Richard and their 2 girls, Ella and Freya. Briony and the girls all adore each other and we have holidayed together before. After the previous holiday they decided that they were unrelated cousins and now they have decided that they are related sisters, so I guess they all got on OK. It was lovely to see them all together. Claire and I had a lovely afternoon with the girls whilst Richard and Stephen were climbing Helvellyn (in the snow I might add, crazy men). Briony's prize comment of the day was that if the men didn't come back then wouldn't it be great if the girls could all live in a commune together! It did make Claire and I laugh!
On the whole it was a great Christmas and just what the doctor ordered to get me back in the right head space for cycle 2. Not to mention that at the weight yesterday I had managed to put back on almost all of the 2.5kg I lost in cycle 1. Over the festive period there were moments tinged with sadness and darker thoughts, but I guess that's only natural with all of this hanging over my head. Briony was upset a couple of times at the amount of hair falling out and my hair changing in quite rapid succession, so this took a little bit of a pep talk.
It's funny what does upset me. There are the obvious moments, like the "Will I be here next year moment" which I kept to myself on Christmas day. But then it also crops up unexpected at the strangest of times. We watched the BBC Little Women drama and there is a scene where one of the sisters is getting married and the mother is watching them getting ready. This made me howl out of self-pity. I can focus on what needs to happen today and tomorrow and even next week, but it is very difficult for me looking into the future at all the life events that I have always assumed I will be around for and handling that in light of all this. I need to find a coping mechanism. As usual I have a few ideas!
On the morning of the 27th, very early (5.15!) Stephen and I set off back home for the blood tests (without Briony, thank you Claire and Richard for having her for a couple of extra days to not expose her to actually seeing me having poison put into me). There was quite a bit of snow around, but we made it safely. Bloods duly dispatched, all there was left to do was to wait around for the morning of the 28th.
For some reason I barely slept at all the night before the chemo. I have no idea why, some nights are just like that now. The chemo doesn't concern me, in fact I was quite looking forward to it in a weird, let's get this moving again kind of way. I sought solace in a book that I had been lent by a friend of a friend called "Tea and Chemo" and pretty much read it in one sitting. It's beautifully written and very positive, which is exactly the attitude I'm trying to take. It is also full of practical advice on dealing with the more hidden and softer side of all this. Like what to do when an itchy scalp is driving you mad (mine is). If you are looking for a reading list for someone in the same position as me than I can highly recommend it. There were some key take aways for me which I will enlighten you on when relevant! I did also watch some of Jaws 2. Man, that movie has not aged well!
I finally dropped off around 5am. With chemo due at 8.30 and meds to take an hour before hand that left me with around 2 hours sleep. I need reminding of this when I am moaning that the chemo makes me tired!
All dosed up we set off for the Chiltern hospital on the icy roads. Safely arrived. Slight argument with Stephen as I have upped the anti on the footwear and decided on Manolo Blahnik shoe attire and Stephen thought it unreasonable for me to attempt to walk across an icy car park in them. I hate to admit it but he was right, so I did a quick change in the reception area to a couple of odd looks. Stephen got me some Uggs for Christmas to try and combat my perpetually icy feet/toes which apparently may get worse with the side effects of chemo. We didn't like to say that they may fall off if they do get any colder. So safely in my room for the morning I did the second shoe change for my new Ugg slippers. I was also sporting my new Ted Baker stole (thank you Nik Nik) and my new Canada Goose jacket (again, thank you Stephen), so I was prepared for any temperature down to around -40!
Bloods safely assessed as good to go and so we kicked off! A brief chat as well about the after effects of cycle 1. Although I think it was the antibiotics that actually made me sick, they have upped the antiemetics a level to see if this helps. There was also a discussion about the GCSF (the drug to repair my battered immune system) as a letter from the consultant saying that we weren't having it this cycle hadn't made it to them. All sorted eventually, but more about this below. The actual chemo days feel like a bit of a fraud as it's a walk in the park. I sit there, get fed and watered at regular intervals, have a chat with the nursing team and then off we go.
My taste buds once again changed fairly quickly at the mere show of the chemo bag and once again I have a mouth that feels like I have always just finished the Jacob's Cream Cracker challenge of eating 3 without having anything to drink. This means I eat more slowly and need lots of liquid/gravy/sauce to wash it all down with as otherwise my mouth seems to take on a velcro like quality.
After the chemo we went home, managed a lovely walk (around 2.5 miles) as it was a beautiful crisp winter's day with some snow on the hills. I also then managed a gentle 4 mile run on the tread mill, so felt pretty good.
The main news of the day I guess is that my hair has run away screaming at the mere thought of cycle 2. I had a shower and it pretty much all came out in my hands and then tested the 10 year warranty (recently expired) on our wet-room floor. It had reached a point where I had bald patches that no amount of careful combing could cover, so last night Stephen took the clippers to it and it has all gone. It didn't upset me, just a bit of a shock really when I looked in the mirror the first time. To complete my football hooligan look Stephen also found quite a significant scar on my head which I can only think is from when I ran into a tree and knocked myself out on the first day of my summer holidays when I was 9! How rock and roll.
It has helped with the itchy scalp, which is apparently my hair's way of protesting about imminent departure. But, it's very cold without hair, especially as mine was so thick previously, so I'm currently writing in a full on bobble hat. I feel justified given the weather outside! The wig should hopefully help as well. I think Stephen is secretly quite pleased as shower and hair time has now been significantly cut!
So, the GCSF. Time to talk a bit technical for a minute. One of the side effects of my chemo is that it has the potential to completely knock out the neutropils in my blood, which are a type of white blood cell that is first on the scene to fight infections. This neutrophil knock-out is called neutropenia. It's not a problem in itself if I don't get an infection because I don't need them then. However, if I do get an infection, then I can't fight it if my neutrophils are low. Different people respond differently, and you can't tell without a blood test.
So where does the GCSF come into it? It's essentially a bit of an insurance policy, but like any policy comes with it's own caveats, fine print and exclusions and there are differing medical opinions. The GCSF stimulates the bone marrow to produce more neutrophils. The medical debate seems to centre around whether these neutrophils are mature enough to do their job properly or just adolescents in an EMO phase wandering around without purpose. They've essentially been pushed into the workplace as teenagers without any proper training as the GCSF forces the neutrophils to be spat out of the bone marrow at whatever stage of development they are in. GCSF also comes with a list of side effects as long as your arm, which include rash (I got this), long bone pain (tick, very painful), fever, chills and temperature spike (also got this). The problem is that it is difficult to distinguish with a temperature whether it is a side effect of the GCSF or an actual infection. Generally, patients are left to see how they go on the first cycle as the risks increase with each cycle and then make a call after this on whether it is needed. However, because we thought we may still be going to Lapland, I had it on the first cycle so we don't know how my neutrophils would cope naturally.
I've not had the GCSF this cycle as both the consultant and I think that it contributed to why I ended up in hospital last time, plus they want to work out if it is the chemo drugs causing the rash (which means I may need the dose reducing which will impact effectiveness) or the GCSF. This felt like the right decision until the Sister on the unit pulled a big face when we said we weren't having it and clearly felt I should be having it.
What it does mean is that I need to be super careful with infection this time round as my poor battered immune system is receiving no support and the implications are pretty stark. If I have even a slight temperature or a list of other things I need to get antibiotics within an hour. This is while they work out if I have any neutrophils or not from a blood test, but the implications are so huge that they cover all their bases and give you the IV antibiotics whilst they work this out. If I do have some neutrophils then fine, but if not and I do turn out to have an infection, then there is a 50% mortality rate, so this is not to be taken lightly.
With that in mind, a note about visitors. I know I have said it before, but please if you are unwell, in the nicest possible way I do not want to see you. With the stats outlined above, I'm afraid it just isn't worth the risk!
Whilst we are on the subject of visitors, one thing I learned from the Tea and Chemo book is that I need to put myself first. Some days I will not want visitors and I won't know what days that will be because of the unpredictability of all of this. Other days I will absolutely want people around me! So please bear with me even with late minute cancellations as I'm feeling my way. There are 2 reasons behind this decision. Being completely honest there are some days when I just won't feel well enough/want to make small talk. The second and main reason is that there are days when I just don't want people to see me ill. I want people to see me as they are used to. I know people want to help, but you all know what I'm like, I'm stubborn and don't want to admit that some days are utterly shit.
So that's it. I'm now one third of the way through the chemo element of this. Wish me luck for the next few days as I hunker down and see what the after effects this time will be!
 |
| Crazy men! |
On the whole it was a great Christmas and just what the doctor ordered to get me back in the right head space for cycle 2. Not to mention that at the weight yesterday I had managed to put back on almost all of the 2.5kg I lost in cycle 1. Over the festive period there were moments tinged with sadness and darker thoughts, but I guess that's only natural with all of this hanging over my head. Briony was upset a couple of times at the amount of hair falling out and my hair changing in quite rapid succession, so this took a little bit of a pep talk.
It's funny what does upset me. There are the obvious moments, like the "Will I be here next year moment" which I kept to myself on Christmas day. But then it also crops up unexpected at the strangest of times. We watched the BBC Little Women drama and there is a scene where one of the sisters is getting married and the mother is watching them getting ready. This made me howl out of self-pity. I can focus on what needs to happen today and tomorrow and even next week, but it is very difficult for me looking into the future at all the life events that I have always assumed I will be around for and handling that in light of all this. I need to find a coping mechanism. As usual I have a few ideas! |
| Christmas day |
For some reason I barely slept at all the night before the chemo. I have no idea why, some nights are just like that now. The chemo doesn't concern me, in fact I was quite looking forward to it in a weird, let's get this moving again kind of way. I sought solace in a book that I had been lent by a friend of a friend called "Tea and Chemo" and pretty much read it in one sitting. It's beautifully written and very positive, which is exactly the attitude I'm trying to take. It is also full of practical advice on dealing with the more hidden and softer side of all this. Like what to do when an itchy scalp is driving you mad (mine is). If you are looking for a reading list for someone in the same position as me than I can highly recommend it. There were some key take aways for me which I will enlighten you on when relevant! I did also watch some of Jaws 2. Man, that movie has not aged well!
I finally dropped off around 5am. With chemo due at 8.30 and meds to take an hour before hand that left me with around 2 hours sleep. I need reminding of this when I am moaning that the chemo makes me tired!
All dosed up we set off for the Chiltern hospital on the icy roads. Safely arrived. Slight argument with Stephen as I have upped the anti on the footwear and decided on Manolo Blahnik shoe attire and Stephen thought it unreasonable for me to attempt to walk across an icy car park in them. I hate to admit it but he was right, so I did a quick change in the reception area to a couple of odd looks. Stephen got me some Uggs for Christmas to try and combat my perpetually icy feet/toes which apparently may get worse with the side effects of chemo. We didn't like to say that they may fall off if they do get any colder. So safely in my room for the morning I did the second shoe change for my new Ugg slippers. I was also sporting my new Ted Baker stole (thank you Nik Nik) and my new Canada Goose jacket (again, thank you Stephen), so I was prepared for any temperature down to around -40!
Bloods safely assessed as good to go and so we kicked off! A brief chat as well about the after effects of cycle 1. Although I think it was the antibiotics that actually made me sick, they have upped the antiemetics a level to see if this helps. There was also a discussion about the GCSF (the drug to repair my battered immune system) as a letter from the consultant saying that we weren't having it this cycle hadn't made it to them. All sorted eventually, but more about this below. The actual chemo days feel like a bit of a fraud as it's a walk in the park. I sit there, get fed and watered at regular intervals, have a chat with the nursing team and then off we go.
My taste buds once again changed fairly quickly at the mere show of the chemo bag and once again I have a mouth that feels like I have always just finished the Jacob's Cream Cracker challenge of eating 3 without having anything to drink. This means I eat more slowly and need lots of liquid/gravy/sauce to wash it all down with as otherwise my mouth seems to take on a velcro like quality.
After the chemo we went home, managed a lovely walk (around 2.5 miles) as it was a beautiful crisp winter's day with some snow on the hills. I also then managed a gentle 4 mile run on the tread mill, so felt pretty good.
The main news of the day I guess is that my hair has run away screaming at the mere thought of cycle 2. I had a shower and it pretty much all came out in my hands and then tested the 10 year warranty (recently expired) on our wet-room floor. It had reached a point where I had bald patches that no amount of careful combing could cover, so last night Stephen took the clippers to it and it has all gone. It didn't upset me, just a bit of a shock really when I looked in the mirror the first time. To complete my football hooligan look Stephen also found quite a significant scar on my head which I can only think is from when I ran into a tree and knocked myself out on the first day of my summer holidays when I was 9! How rock and roll.
It has helped with the itchy scalp, which is apparently my hair's way of protesting about imminent departure. But, it's very cold without hair, especially as mine was so thick previously, so I'm currently writing in a full on bobble hat. I feel justified given the weather outside! The wig should hopefully help as well. I think Stephen is secretly quite pleased as shower and hair time has now been significantly cut!
So, the GCSF. Time to talk a bit technical for a minute. One of the side effects of my chemo is that it has the potential to completely knock out the neutropils in my blood, which are a type of white blood cell that is first on the scene to fight infections. This neutrophil knock-out is called neutropenia. It's not a problem in itself if I don't get an infection because I don't need them then. However, if I do get an infection, then I can't fight it if my neutrophils are low. Different people respond differently, and you can't tell without a blood test.
So where does the GCSF come into it? It's essentially a bit of an insurance policy, but like any policy comes with it's own caveats, fine print and exclusions and there are differing medical opinions. The GCSF stimulates the bone marrow to produce more neutrophils. The medical debate seems to centre around whether these neutrophils are mature enough to do their job properly or just adolescents in an EMO phase wandering around without purpose. They've essentially been pushed into the workplace as teenagers without any proper training as the GCSF forces the neutrophils to be spat out of the bone marrow at whatever stage of development they are in. GCSF also comes with a list of side effects as long as your arm, which include rash (I got this), long bone pain (tick, very painful), fever, chills and temperature spike (also got this). The problem is that it is difficult to distinguish with a temperature whether it is a side effect of the GCSF or an actual infection. Generally, patients are left to see how they go on the first cycle as the risks increase with each cycle and then make a call after this on whether it is needed. However, because we thought we may still be going to Lapland, I had it on the first cycle so we don't know how my neutrophils would cope naturally.
I've not had the GCSF this cycle as both the consultant and I think that it contributed to why I ended up in hospital last time, plus they want to work out if it is the chemo drugs causing the rash (which means I may need the dose reducing which will impact effectiveness) or the GCSF. This felt like the right decision until the Sister on the unit pulled a big face when we said we weren't having it and clearly felt I should be having it.
What it does mean is that I need to be super careful with infection this time round as my poor battered immune system is receiving no support and the implications are pretty stark. If I have even a slight temperature or a list of other things I need to get antibiotics within an hour. This is while they work out if I have any neutrophils or not from a blood test, but the implications are so huge that they cover all their bases and give you the IV antibiotics whilst they work this out. If I do have some neutrophils then fine, but if not and I do turn out to have an infection, then there is a 50% mortality rate, so this is not to be taken lightly.
With that in mind, a note about visitors. I know I have said it before, but please if you are unwell, in the nicest possible way I do not want to see you. With the stats outlined above, I'm afraid it just isn't worth the risk!
Whilst we are on the subject of visitors, one thing I learned from the Tea and Chemo book is that I need to put myself first. Some days I will not want visitors and I won't know what days that will be because of the unpredictability of all of this. Other days I will absolutely want people around me! So please bear with me even with late minute cancellations as I'm feeling my way. There are 2 reasons behind this decision. Being completely honest there are some days when I just won't feel well enough/want to make small talk. The second and main reason is that there are days when I just don't want people to see me ill. I want people to see me as they are used to. I know people want to help, but you all know what I'm like, I'm stubborn and don't want to admit that some days are utterly shit.
So that's it. I'm now one third of the way through the chemo element of this. Wish me luck for the next few days as I hunker down and see what the after effects this time will be!
I love you my brave and wonderful friend. Behind you every step of the way xxx
ReplyDeleteEveryone loves a girl in a hat �� Keep fighting on girl
ReplyDeleteThinking of you, love the shoe choice! Hope the cell counts behave themselves!
ReplyDeleteLove and non-infective virtual hugs
Biggest hugs heading your way and we can't wait to see you beat this in 2018. Big party planned for the last treatment and we will be here for you every step of the way. Give me a shout with any shopping needs - I can always shove goodies through the letterbox!
ReplyDeleteYou look gorgeous rocking the bobble hat. Love you loads Mrs Chaff. You're amazing xxx
ReplyDeleteMassive virtual hugs and loads of love to my very brave friend. Hxxx
ReplyDelete