The weeks after cycle one June weeks 3 and 4
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The week after cycle one
I would like to say that I stoically and uncomplainingly withstood the first 6 days of side effects of cycle one - but I did not. I lay in bed quite a bit feeling sorry for myself, I wept a few times, I could not muster the slightest ounce of bravery to help distract me. I simply felt nauseous (all the time) and like I had the most terrible hangover but one that would not go away. My taste went funny as my mouth turned metallic and dry. Even sleeping bought not respite – it was not a relief from it but I slept in spite of it waking on and off to be reminded it was still there. Apart from the first day after I did get up and get dressed and did a few little trips to walk the dog and to go to the local hair dresser (more on that later) and it felt better being slightly busy as it distracted me. Then on Sunday I woke up feeling ever so nearly normal and the relief was just huge. I was not going to have to spend every day from now until the end of treatment feeling like I did in those early days – and with that feeling of elation I started to feel just that little bit brave again. I have now started my strategy for dealing with round two slightly better. My theory is that the more distracted I can be (whether it be meditation tapes or DVDs) the quicker the time will go and eventually the nausea will go. I think I can cope with the other many SE – fatigue on its own is fine (as long as I have help with kids and can go to bed when I need to – which I do and can) – but nausea is just unbearable. Particularly as it mucks with my appetite and I do love my food so anything that means I cannot enjoy my food distresses me.
I have started making myself daily milkshakes from banana, yoghurt, honey, and flax oil. I have been informed that flax oil works miracles on all sorts of fronts – so I ordered some as what I have read about it seems convincing enough. But it was in the preparation of one of these that I suffered my first injury which resulted in a visit to the GP to get antibiotic cream as it did not heal. I decided to cut brazil nuts into tiny pieces and mix them with my healthy milkshake. In the process I got a piece of brazil nut shell caught under my thumb nail. This would normally have, I am sure, had little impact but in this instance became infected and resulted in a trip to the GP on the advice of Lynette. Apparently some people are plagued by minor skin infections on their hands during chemo and with lowered immunity they can turn quite nasty. How dangerous can making a healing milkshake be? Clearly in my case quite dangerous.
The oncology nurse had said that my hair was too long and that I needed to cut it – as this would increase the chance of me keeping it. It would also be less distressing if it starts falling out (which would happen around day 18 – the end of this week – if it is going to happen). So on Thursday, 2 days after chemo, I went to my local hairdresser. As I have used the cold cap I had to tell the hairdresser and share the instructions about hair care with him (gentle or no brushing/ph neutral products/tepid or cold water and no hot blow drying). I felt particularly sorry for myself that day. Cutting my hair shorter felt very symbolic – this was the beginning of looking as if I was ill or under treatment and was one step from being bald. I felt nauseous and tired and weepy. The hairdresser was an angel. He was clearly shocked that I was on chemo and had not come across dealing with someone on chemo before, which surprised me. But he was gentle with my hair and took ages slowly trying to get the tangles out without brushing. The finished product is actually rather nice – I should have had it cut shorter before. I call it my ‘now you see it’ or ‘here today’ hair cut. If I do use the cold cap next time it may stay but I still haven’t made up my mind and am waiting to see how much hair I find on my pillow on Friday and over the weekend. We are taking Ella on a trip to London for her birthday around then, and to see Wicked – and I have had visions of handfuls of hair coming away at the slightest gust of wind.
This past weekend went to my cousins wedding near Lyon. We had held off making a decision until we knew how I would be. The airtickets had been bought way before I was even diagnosed. Some of our best friends hired a convertible which they drove us around in – we chuckled at the picture of all my hair flying off as we zoomed through the narrow rural French roads with the wind roaring past. Since my first week I have felt almost normal – which has been completely wonderful and rather strange. I feel a complete fraud. I cannot go very far without someone either mentioning my new short hair or wanting to know how I am. I look far too well for someone on chemo. Maybe that is why losing your hair is good – it stamps ‘be nice to me as I am undergoing poisonous treatment’ all over. Which is exactly why I am so conflicted about whether I can continue with the cold cap or not. I don’t want to look ill – I want to look normal - and the moment you lose your hair you are reminded everyday that things are not in fact normal.
In my search for distractions to help me after my next cycle I tried out a local reflexologist. I do honestly believe that this can work in some circumstances and had been meaning to try her out for a while. Of course I was again in the situation of having to relate my particular circumstances during my first consultation – to which I got a mixed response. I should describe her first. She runs a tiny business with a shop front. It is filled with pictures of the reflexology points on hands and feet and alternative books and healing information. She dresses in white (clearly her uniform). There is something incongruous about her appearance and her gruff smokers voice and dyed blond hair. I guess she is about 50 and I could imagine her sitting in a gypsy trailer, with a crystal ball surrounded by candles and tinkling sounds. She wanted to know that my doctor said it was OK to treatment – so I text Lynette who text back that there was no clinical reason why not. I had to restrain a laugh as she grasped my hand when I told her I had had breast cancer and was going through treatment – she looked at me in a slightly pained way and held my hand firmly in the middle and told me she was also a healer. I was made to pick a card from a stack of ‘angel cards’ – I picked one with the word ‘openness’ with some words of wisdom which boiled down to the need for me to be more open and release more. I could foresee the next 20 minutes. We went through a list of medical conditions and detailed those that applied (once upon a time I could tick NA to all of these). She wanted to know about my mental state – and how stressed I was. I had to mark my emotional state out of 10 – I gave myself an 8, I was well supported and I considered myself no more stressed than most people with a job and family. I was not giving her much to work with. She quoted some study which had indicated that 75% of illness was the result of stress and only 25% medical (not sure what that means). I am not quite at the stage that I am going to try anything. At this point my treatment is chemotherapy. I will perhaps review what I do after this is finished in terms of ‘healing’ but I am not sure reflexology is going to do it at this stage. What I am hoping for is some physical relief from the symptoms of chemo and to help keep me feeling energetic in between cycles. After this rather protracted introduction she started some treatment and I have to say she had a wonderful touch and it felt as if she really knew her stuff and I will most definitely return. She wants to use me as a case study (oh dear) and encouraged me to get a journal and write down all my emotional feelings. I will not be doing this and certainly would not share with her if I did – but was far too polite to say so. She will of course interpret this as being at the heart of the problem – if only I would open up then I would release all that pent up and negative emotional energy which would of course cure my cancer.
I am in week 3 now – with cycle two in 6 days. I am working from home – going in once a week at the moment (except the week of chemo) and living life almost normally – but being a bit more gentle on myself. My head started itching a bit today. Watch this space. My port has settled down and I barely notice it except when I accidently knock it and it feels very strange sticking out under my skin. I am still suffering from cording down my left arm which I cannot stretch out. The cords (I have two of them) run all the way down to my wrist – they hurt less than the early days – except when I try and stretch out my arm to reach for something high on a shelf or to pick something from the floor. I think I will see if a physiotherapist will help – I cannot seem to find anything about this in any of the literature I have been able to find via the web.
Kids still doing well – as I am being more or less normal (at home a bit more than usual) they have moved on for the most part and life over the last 2 weeks has felt like everyday life. Ned and Tom remain keenly interested in the state of my hair.
I would like to say that I stoically and uncomplainingly withstood the first 6 days of side effects of cycle one - but I did not. I lay in bed quite a bit feeling sorry for myself, I wept a few times, I could not muster the slightest ounce of bravery to help distract me. I simply felt nauseous (all the time) and like I had the most terrible hangover but one that would not go away. My taste went funny as my mouth turned metallic and dry. Even sleeping bought not respite – it was not a relief from it but I slept in spite of it waking on and off to be reminded it was still there. Apart from the first day after I did get up and get dressed and did a few little trips to walk the dog and to go to the local hair dresser (more on that later) and it felt better being slightly busy as it distracted me. Then on Sunday I woke up feeling ever so nearly normal and the relief was just huge. I was not going to have to spend every day from now until the end of treatment feeling like I did in those early days – and with that feeling of elation I started to feel just that little bit brave again. I have now started my strategy for dealing with round two slightly better. My theory is that the more distracted I can be (whether it be meditation tapes or DVDs) the quicker the time will go and eventually the nausea will go. I think I can cope with the other many SE – fatigue on its own is fine (as long as I have help with kids and can go to bed when I need to – which I do and can) – but nausea is just unbearable. Particularly as it mucks with my appetite and I do love my food so anything that means I cannot enjoy my food distresses me.
I have started making myself daily milkshakes from banana, yoghurt, honey, and flax oil. I have been informed that flax oil works miracles on all sorts of fronts – so I ordered some as what I have read about it seems convincing enough. But it was in the preparation of one of these that I suffered my first injury which resulted in a visit to the GP to get antibiotic cream as it did not heal. I decided to cut brazil nuts into tiny pieces and mix them with my healthy milkshake. In the process I got a piece of brazil nut shell caught under my thumb nail. This would normally have, I am sure, had little impact but in this instance became infected and resulted in a trip to the GP on the advice of Lynette. Apparently some people are plagued by minor skin infections on their hands during chemo and with lowered immunity they can turn quite nasty. How dangerous can making a healing milkshake be? Clearly in my case quite dangerous.
The oncology nurse had said that my hair was too long and that I needed to cut it – as this would increase the chance of me keeping it. It would also be less distressing if it starts falling out (which would happen around day 18 – the end of this week – if it is going to happen). So on Thursday, 2 days after chemo, I went to my local hairdresser. As I have used the cold cap I had to tell the hairdresser and share the instructions about hair care with him (gentle or no brushing/ph neutral products/tepid or cold water and no hot blow drying). I felt particularly sorry for myself that day. Cutting my hair shorter felt very symbolic – this was the beginning of looking as if I was ill or under treatment and was one step from being bald. I felt nauseous and tired and weepy. The hairdresser was an angel. He was clearly shocked that I was on chemo and had not come across dealing with someone on chemo before, which surprised me. But he was gentle with my hair and took ages slowly trying to get the tangles out without brushing. The finished product is actually rather nice – I should have had it cut shorter before. I call it my ‘now you see it’ or ‘here today’ hair cut. If I do use the cold cap next time it may stay but I still haven’t made up my mind and am waiting to see how much hair I find on my pillow on Friday and over the weekend. We are taking Ella on a trip to London for her birthday around then, and to see Wicked – and I have had visions of handfuls of hair coming away at the slightest gust of wind.
This past weekend went to my cousins wedding near Lyon. We had held off making a decision until we knew how I would be. The airtickets had been bought way before I was even diagnosed. Some of our best friends hired a convertible which they drove us around in – we chuckled at the picture of all my hair flying off as we zoomed through the narrow rural French roads with the wind roaring past. Since my first week I have felt almost normal – which has been completely wonderful and rather strange. I feel a complete fraud. I cannot go very far without someone either mentioning my new short hair or wanting to know how I am. I look far too well for someone on chemo. Maybe that is why losing your hair is good – it stamps ‘be nice to me as I am undergoing poisonous treatment’ all over. Which is exactly why I am so conflicted about whether I can continue with the cold cap or not. I don’t want to look ill – I want to look normal - and the moment you lose your hair you are reminded everyday that things are not in fact normal.
In my search for distractions to help me after my next cycle I tried out a local reflexologist. I do honestly believe that this can work in some circumstances and had been meaning to try her out for a while. Of course I was again in the situation of having to relate my particular circumstances during my first consultation – to which I got a mixed response. I should describe her first. She runs a tiny business with a shop front. It is filled with pictures of the reflexology points on hands and feet and alternative books and healing information. She dresses in white (clearly her uniform). There is something incongruous about her appearance and her gruff smokers voice and dyed blond hair. I guess she is about 50 and I could imagine her sitting in a gypsy trailer, with a crystal ball surrounded by candles and tinkling sounds. She wanted to know that my doctor said it was OK to treatment – so I text Lynette who text back that there was no clinical reason why not. I had to restrain a laugh as she grasped my hand when I told her I had had breast cancer and was going through treatment – she looked at me in a slightly pained way and held my hand firmly in the middle and told me she was also a healer. I was made to pick a card from a stack of ‘angel cards’ – I picked one with the word ‘openness’ with some words of wisdom which boiled down to the need for me to be more open and release more. I could foresee the next 20 minutes. We went through a list of medical conditions and detailed those that applied (once upon a time I could tick NA to all of these). She wanted to know about my mental state – and how stressed I was. I had to mark my emotional state out of 10 – I gave myself an 8, I was well supported and I considered myself no more stressed than most people with a job and family. I was not giving her much to work with. She quoted some study which had indicated that 75% of illness was the result of stress and only 25% medical (not sure what that means). I am not quite at the stage that I am going to try anything. At this point my treatment is chemotherapy. I will perhaps review what I do after this is finished in terms of ‘healing’ but I am not sure reflexology is going to do it at this stage. What I am hoping for is some physical relief from the symptoms of chemo and to help keep me feeling energetic in between cycles. After this rather protracted introduction she started some treatment and I have to say she had a wonderful touch and it felt as if she really knew her stuff and I will most definitely return. She wants to use me as a case study (oh dear) and encouraged me to get a journal and write down all my emotional feelings. I will not be doing this and certainly would not share with her if I did – but was far too polite to say so. She will of course interpret this as being at the heart of the problem – if only I would open up then I would release all that pent up and negative emotional energy which would of course cure my cancer.
I am in week 3 now – with cycle two in 6 days. I am working from home – going in once a week at the moment (except the week of chemo) and living life almost normally – but being a bit more gentle on myself. My head started itching a bit today. Watch this space. My port has settled down and I barely notice it except when I accidently knock it and it feels very strange sticking out under my skin. I am still suffering from cording down my left arm which I cannot stretch out. The cords (I have two of them) run all the way down to my wrist – they hurt less than the early days – except when I try and stretch out my arm to reach for something high on a shelf or to pick something from the floor. I think I will see if a physiotherapist will help – I cannot seem to find anything about this in any of the literature I have been able to find via the web.
Kids still doing well – as I am being more or less normal (at home a bit more than usual) they have moved on for the most part and life over the last 2 weeks has felt like everyday life. Ned and Tom remain keenly interested in the state of my hair.