Cycle Two - 6th July 2010
/
15th July 2010
Cycle Two has been more of a challenge than Cycle One. The actual process was somewhat more horrendous – simply because I knew what was coming.
My obsession for the few days before the session was the cold cap - no cold cap dilemma. Time was ticking and I could not decide what to do. What I did decide was that I would make up my mind on the day. In fact I did not decide until literally as I sat down in the chair ready for the oncology nurse to wet and condition my hair, cold cap machine (machine of torture) sitting ominously next to me all revved up and ready to go – pink cold cap gently steaming frozen air. I have, no doubt, bored a number of you with my obsessive musings about what to do. This included my children and my mother.
My friends and sister were quick to pick up that, deep down, I was clearly having trouble and did not want me to go through the torture. I wonder whether also some vague interest in wig wearing was behind their easy support for the hair loss route (as well of course as a concern that I do not suffer unnecessarily). My mother and children on the other hand (except, I have to say, Ella who I think falls into the previous no cold cap camp) were clearly favouring the keep my hair – grin and bear it route. While my mother, to be fair, did keep repeating the ‘it has to be your decision louise’ line – there were sufficient ‘mind over matter’ type comments spattered through our conversation for me to work out where she sub consciously stood on the matter. My husband, I truly believe, wanted whatever would make me most happy/least distressed.
I sat in the chemo room deliberating far too long on this matter, with a roomful of people watching and waiting for my decision. I simply think that deep down there was something monstrous to mum and the kids imagining their daughter/mother with no hair.
In the end I did not wear the cold cap and once I had made this decision I felt relief. Three and half hours with a freezing hat on seems so little a time to put up with - but it is not just this that is going on – in the meantime those horrible drugs are being slowly infused and it is the combination of the two that makes it so unbearable. Making the decision meant I could not go back – I was actually making a decision that would mean that in the coming days I will lose my hair – and that was hard.
With the decision made my cold cap-no cold cap obsession has been taken over by the process and anticipation of hair loss plus my disbelief that this should have been such a focus for me. Why is losing my hair such a shocking prospect (at least for me it is)? Part of my daily routine now is to run my fingers through my hair and catch the growing number of lose strands that come out so easily. Partly I think I keep repeating this action to check to see if maybe it has stopped – or confirm that it is really happening. Partly it is to collect the hairs before they fall on my shoulders, the floor and in my food (which happened for the first time yesterday). The slow release of hairs on my head is definitely growing in momentum and I now compete with the dog’s hair shedding. Our bedroom floor collects short black dog hairs and longer human hairs. My head itches incessantly and in my calculation I will lose the bulk of it the Saturday after next when I am supposed to be at Chessington World of Adventures (a theme park) for Tom’s 12th birthday. You can, I am sure, picture what I am envisaging….racing round on the Dragons Roller Coaster, being flung upside down and whoops….a shower of hair falls dramatically onto the crowd of spectators. A déjà vu of my convertible moment. I have started to dream about it. The mechanics of how it might happen fascinate me. How does it all fall out so suddenly? My Aunt said that on the day hers started to come out she went into the shower to ease the rest off and had to place a sink blocker over the plug hole to catch everything. She then cut/shaved the rest off so as not to look completely mad with random strands over the head still attached.
I have been considering an action plan. Do I trust Rupert to shave remaining hair off my head? I love him – but no I don’t trust him to do it, mainly because we do not have the right equipment. So – do I, on the day it starts coming out properly – stuff it all in a scarf and race to our local hairdresser and ask for them to shave it all off. I think if I did that I may shock the gentle gay hairdresser who last cut my hair short and who has never dealt with this sort of thing. Perhaps I had better go in and talk it through – as I may need an emergency slot. I am not sure ‘sorry the only appointment we have is next Wednesday’ would quite do.
Why am I so certain my hair will go? Most women on the drugs I am on do lose their hair – although I do hear the odd story of someone who didn’t and them swearing by some remedy or supplement that prevented this. One of these being that flax oil I keep talking about. I have tried, oh so hard, to keep up my flax oil in take but it simply makes me want to vomit so I am not sure I have ingested sufficient quantities to make it work on my hair. The more personal and compelling evidence is the loss of hair elsewhere. My under arms are wonderfully smooth and I have not touched a razor in a week. My leg hair also does not seem to be growing. And very soon I may well have my very first Hollywood. I find this rather disturbing.
Back to now. And more on wigs. So – once the mechanics of hair loss from my head have run their course the next thing is wig etiquette. I have been looking at my wig daily – it sits on a model head on my dressing room table in my bedroom. It has had one outing and that was the day I bought it. The prospect of using it for real is looming. On the one hand I feel deep embarrassment at even the thought of having to face the world with this. I am sure I will get used to it rapidly and by the end will be so confident in it I may go wig mad and get a few radically different versions. But I am not there yet – I will have to walk out and face the many people and friends I know locally and will see on a day to day basis, then there will be facing other friends and family for the first time in dribs and drabs over the coming weeks. Today was particulary windy and as I walked to work I thought first ‘would this wind be strong enough to blow hair off when it is ready to go?’ and on then I thought ‘what happens to wigs in the wind?’ I will have to practice putting it on tightly enough so that it can withstand sudden blasts of air. I noticed that in the pictures of Jennifer Sanders at Wimbledon she was wearing a wig and a scarf. Hmm – is that the technique – wig on and then tie it on tight with fancy scarf. Or was it just fashion? The other thing I know I will have to be careful of – and this is a lesson from my Aunt who is beautiful in hers – and now a real pro – is that I must remember that it is not a hat and not to adjust it in public. She says it is very tempting to stick your fingers behind your ears up under the wig and pull it on tighter and move it back into position if it has shifted and that once wig wearing is second nature and becomes part of your everyday routine it is easy to forget yourself when out and about.
Cycle Two has hit me harder than cycle one – which is not unexpected but still not enjoyable. I was nauseous even before the slow dribble of drugs into my port began – just the thought of it made me wince. I went to bed virtually as soon as I got home that day and felt so terribly bad – nausea being the worst all consuming feeling –I lay their rocking and complaining. Ella came to sit with me during some of this time to distract me and tell me cheerfully that I knew it would be bad and that this was good bad and that I knew it would go away so to stop complaining (in the nicest possible way). I rang the oncology nurse hot line at a point when the nausea got so bad I could not bear it and wanted drugs that might work better, but no sooner had I got through and given them my name than I was violently sick and had to hand the phone to poor Ella to talk to the nurse (or rather just inform her that I was currently being sick and so could not talk). I felt better afterwards. It is normal for the side effects to get worse each time but I suspect I also aggravated the nausea by making myself my flax oil (there it is again) banana and yoghurt milkshake (yes the one that gave me an infected nail through a rogue piece of brazil nut) just before going to my room after getting home from treatment. I did this as I thought I had better have it before the nausea really set in as last time I could not stomach the famous milkshake for at least a week. My reckoning was get it down me before I get to that point. Well it went down and then it came up again. My lovely Ella then raced around emptying the sick bucket, wiping my face, getting me my tooth brush and tucking me in.
This time it has taken me until today to feel better – that is well over a week since the treatment, nine days ago. The nausea went on Tuesday (a week after treatment) and I have felt much more tired until now and have used my bed as a base. When the kids are at school I work and communicate from bed. It has felt rather like it does when you are getting over flu and you try to do something but get an overwhelming wave of exhaustion you have to sit down. This in practice has meant a few tetchy moments with the kids (and a few tears begging them to do what they are told first time they are asked). I have certainly been more short tempered and less patient, and the kids have noticed. In one set too Tom accused me of being more grumpy ‘since you got cancer’. Rupert continues to hobble around in his Beckham Boot, brings me tea and toast in bed every morning and balances his job and role as primary carer for the kids when I am out of action. The levels of stress in the house do go up and down, particularly when he senses one of the children is not doing what I ask them or are answering back or not clearing up after themselves. He does not want me to have to have any stress at all (which is difficult in a big family) but we are doing OK.
I visited the reflexologist again for a relaxing treatment. She has asked me to note down any changes I experience after the treatment– and I am searching for what to write. She wants my next session to be longer so ‘we can have a chat’. I have to admit to texting her today to delay the appointment to next week. I cannot tell you how much I really do not want a ‘chat’. I just want a nice relaxing foot treatment and I am too much of a chicken to say so. In any case, if I did that would confirm, in her mind, that I am blocking my mind to healing.
I have had all sorts of advice directly or through literature (books and the internet). Laughter is apparently very healing – and one person was allegedly cured by watching funny DVDs non stop. I am sure laughing releases alls sorts of positive energy but I would say I laugh quite a bit already. I am not sure I could fit more laughing in without attracting attention and I am absolutely certain it should not be relied on as a primary healing strategy.
Rupert Ella and Tom are flying to New York on Sunday for Sally Ann’s (Truly Scrumptious) 80th birthday and I am completely devastated that I cannot go. We had the tickets booked for all four of us to go before I was diagnosed and we have had to cancel my ticket. I cannot risk catching something on the plane and think it would be difficult to get insurance while under chemo. We could not risk going without insurance as I would inevitably pick something up and end up with some eye watering American health care bill.
My cords are still there restricting my arm movement, my port and the wires to the vein to my heart are becoming increasingly uncomfortable and I am not looking forward to cycle 3 on 27th July. Given my reaction to cycle two I have been prescribed some new anti nausea drugs by my oncologist which I am hoping will lighten the load. Importantly today I feel pretty good!
That’s it for now. X
Cycle Two has been more of a challenge than Cycle One. The actual process was somewhat more horrendous – simply because I knew what was coming.
My obsession for the few days before the session was the cold cap - no cold cap dilemma. Time was ticking and I could not decide what to do. What I did decide was that I would make up my mind on the day. In fact I did not decide until literally as I sat down in the chair ready for the oncology nurse to wet and condition my hair, cold cap machine (machine of torture) sitting ominously next to me all revved up and ready to go – pink cold cap gently steaming frozen air. I have, no doubt, bored a number of you with my obsessive musings about what to do. This included my children and my mother.
My friends and sister were quick to pick up that, deep down, I was clearly having trouble and did not want me to go through the torture. I wonder whether also some vague interest in wig wearing was behind their easy support for the hair loss route (as well of course as a concern that I do not suffer unnecessarily). My mother and children on the other hand (except, I have to say, Ella who I think falls into the previous no cold cap camp) were clearly favouring the keep my hair – grin and bear it route. While my mother, to be fair, did keep repeating the ‘it has to be your decision louise’ line – there were sufficient ‘mind over matter’ type comments spattered through our conversation for me to work out where she sub consciously stood on the matter. My husband, I truly believe, wanted whatever would make me most happy/least distressed.
I sat in the chemo room deliberating far too long on this matter, with a roomful of people watching and waiting for my decision. I simply think that deep down there was something monstrous to mum and the kids imagining their daughter/mother with no hair.
In the end I did not wear the cold cap and once I had made this decision I felt relief. Three and half hours with a freezing hat on seems so little a time to put up with - but it is not just this that is going on – in the meantime those horrible drugs are being slowly infused and it is the combination of the two that makes it so unbearable. Making the decision meant I could not go back – I was actually making a decision that would mean that in the coming days I will lose my hair – and that was hard.
With the decision made my cold cap-no cold cap obsession has been taken over by the process and anticipation of hair loss plus my disbelief that this should have been such a focus for me. Why is losing my hair such a shocking prospect (at least for me it is)? Part of my daily routine now is to run my fingers through my hair and catch the growing number of lose strands that come out so easily. Partly I think I keep repeating this action to check to see if maybe it has stopped – or confirm that it is really happening. Partly it is to collect the hairs before they fall on my shoulders, the floor and in my food (which happened for the first time yesterday). The slow release of hairs on my head is definitely growing in momentum and I now compete with the dog’s hair shedding. Our bedroom floor collects short black dog hairs and longer human hairs. My head itches incessantly and in my calculation I will lose the bulk of it the Saturday after next when I am supposed to be at Chessington World of Adventures (a theme park) for Tom’s 12th birthday. You can, I am sure, picture what I am envisaging….racing round on the Dragons Roller Coaster, being flung upside down and whoops….a shower of hair falls dramatically onto the crowd of spectators. A déjà vu of my convertible moment. I have started to dream about it. The mechanics of how it might happen fascinate me. How does it all fall out so suddenly? My Aunt said that on the day hers started to come out she went into the shower to ease the rest off and had to place a sink blocker over the plug hole to catch everything. She then cut/shaved the rest off so as not to look completely mad with random strands over the head still attached.
I have been considering an action plan. Do I trust Rupert to shave remaining hair off my head? I love him – but no I don’t trust him to do it, mainly because we do not have the right equipment. So – do I, on the day it starts coming out properly – stuff it all in a scarf and race to our local hairdresser and ask for them to shave it all off. I think if I did that I may shock the gentle gay hairdresser who last cut my hair short and who has never dealt with this sort of thing. Perhaps I had better go in and talk it through – as I may need an emergency slot. I am not sure ‘sorry the only appointment we have is next Wednesday’ would quite do.
Why am I so certain my hair will go? Most women on the drugs I am on do lose their hair – although I do hear the odd story of someone who didn’t and them swearing by some remedy or supplement that prevented this. One of these being that flax oil I keep talking about. I have tried, oh so hard, to keep up my flax oil in take but it simply makes me want to vomit so I am not sure I have ingested sufficient quantities to make it work on my hair. The more personal and compelling evidence is the loss of hair elsewhere. My under arms are wonderfully smooth and I have not touched a razor in a week. My leg hair also does not seem to be growing. And very soon I may well have my very first Hollywood. I find this rather disturbing.
Back to now. And more on wigs. So – once the mechanics of hair loss from my head have run their course the next thing is wig etiquette. I have been looking at my wig daily – it sits on a model head on my dressing room table in my bedroom. It has had one outing and that was the day I bought it. The prospect of using it for real is looming. On the one hand I feel deep embarrassment at even the thought of having to face the world with this. I am sure I will get used to it rapidly and by the end will be so confident in it I may go wig mad and get a few radically different versions. But I am not there yet – I will have to walk out and face the many people and friends I know locally and will see on a day to day basis, then there will be facing other friends and family for the first time in dribs and drabs over the coming weeks. Today was particulary windy and as I walked to work I thought first ‘would this wind be strong enough to blow hair off when it is ready to go?’ and on then I thought ‘what happens to wigs in the wind?’ I will have to practice putting it on tightly enough so that it can withstand sudden blasts of air. I noticed that in the pictures of Jennifer Sanders at Wimbledon she was wearing a wig and a scarf. Hmm – is that the technique – wig on and then tie it on tight with fancy scarf. Or was it just fashion? The other thing I know I will have to be careful of – and this is a lesson from my Aunt who is beautiful in hers – and now a real pro – is that I must remember that it is not a hat and not to adjust it in public. She says it is very tempting to stick your fingers behind your ears up under the wig and pull it on tighter and move it back into position if it has shifted and that once wig wearing is second nature and becomes part of your everyday routine it is easy to forget yourself when out and about.
Cycle Two has hit me harder than cycle one – which is not unexpected but still not enjoyable. I was nauseous even before the slow dribble of drugs into my port began – just the thought of it made me wince. I went to bed virtually as soon as I got home that day and felt so terribly bad – nausea being the worst all consuming feeling –I lay their rocking and complaining. Ella came to sit with me during some of this time to distract me and tell me cheerfully that I knew it would be bad and that this was good bad and that I knew it would go away so to stop complaining (in the nicest possible way). I rang the oncology nurse hot line at a point when the nausea got so bad I could not bear it and wanted drugs that might work better, but no sooner had I got through and given them my name than I was violently sick and had to hand the phone to poor Ella to talk to the nurse (or rather just inform her that I was currently being sick and so could not talk). I felt better afterwards. It is normal for the side effects to get worse each time but I suspect I also aggravated the nausea by making myself my flax oil (there it is again) banana and yoghurt milkshake (yes the one that gave me an infected nail through a rogue piece of brazil nut) just before going to my room after getting home from treatment. I did this as I thought I had better have it before the nausea really set in as last time I could not stomach the famous milkshake for at least a week. My reckoning was get it down me before I get to that point. Well it went down and then it came up again. My lovely Ella then raced around emptying the sick bucket, wiping my face, getting me my tooth brush and tucking me in.
This time it has taken me until today to feel better – that is well over a week since the treatment, nine days ago. The nausea went on Tuesday (a week after treatment) and I have felt much more tired until now and have used my bed as a base. When the kids are at school I work and communicate from bed. It has felt rather like it does when you are getting over flu and you try to do something but get an overwhelming wave of exhaustion you have to sit down. This in practice has meant a few tetchy moments with the kids (and a few tears begging them to do what they are told first time they are asked). I have certainly been more short tempered and less patient, and the kids have noticed. In one set too Tom accused me of being more grumpy ‘since you got cancer’. Rupert continues to hobble around in his Beckham Boot, brings me tea and toast in bed every morning and balances his job and role as primary carer for the kids when I am out of action. The levels of stress in the house do go up and down, particularly when he senses one of the children is not doing what I ask them or are answering back or not clearing up after themselves. He does not want me to have to have any stress at all (which is difficult in a big family) but we are doing OK.
I visited the reflexologist again for a relaxing treatment. She has asked me to note down any changes I experience after the treatment– and I am searching for what to write. She wants my next session to be longer so ‘we can have a chat’. I have to admit to texting her today to delay the appointment to next week. I cannot tell you how much I really do not want a ‘chat’. I just want a nice relaxing foot treatment and I am too much of a chicken to say so. In any case, if I did that would confirm, in her mind, that I am blocking my mind to healing.
I have had all sorts of advice directly or through literature (books and the internet). Laughter is apparently very healing – and one person was allegedly cured by watching funny DVDs non stop. I am sure laughing releases alls sorts of positive energy but I would say I laugh quite a bit already. I am not sure I could fit more laughing in without attracting attention and I am absolutely certain it should not be relied on as a primary healing strategy.
Rupert Ella and Tom are flying to New York on Sunday for Sally Ann’s (Truly Scrumptious) 80th birthday and I am completely devastated that I cannot go. We had the tickets booked for all four of us to go before I was diagnosed and we have had to cancel my ticket. I cannot risk catching something on the plane and think it would be difficult to get insurance while under chemo. We could not risk going without insurance as I would inevitably pick something up and end up with some eye watering American health care bill.
My cords are still there restricting my arm movement, my port and the wires to the vein to my heart are becoming increasingly uncomfortable and I am not looking forward to cycle 3 on 27th July. Given my reaction to cycle two I have been prescribed some new anti nausea drugs by my oncologist which I am hoping will lighten the load. Importantly today I feel pretty good!
That’s it for now. X