After Surgery
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After Surgery
We went to see the breast consultant on the Thursday after Surgery – he examined his handiwork, removed the sterostrips and covered it again with another plaster and gave us the results from pathology. The tumor was 1.9cm – not 1 cm which it had been estimated at the initial examination (that means nearly 2 billion bad cells rather than 1 billion) – not sure how it hid in my not very large left breast as I used to semi examine myself when showering. We knew it was estrogen responsive – but found it was also progesterone responsive; it was not in the nodes, there was no vascular invasion and it was grade 2 all the way through. So this was not a bad set of results – it could not have been better from what we already knew about it and the surgeon and Mcmillian nurse Lynette actually allowed themselves to look and sound pleased about it. Usually they are so tight lipped and you stare at them trying to read something into their inscrutable faces but on this day they clearly enjoyed telling us these results.
Rupert was overwhelmed by this meeting and it was the first time he has really cried – in relief. I did not cry in relief – I suppose I have spent that much more time thinking and reading and I know that even women with my type of results die and so even though it is good that there is no obvious evidence of spread – they cannot say that there is no cancer – they can say that it is likely that there is no cancer. I certainly feel positive about these results – it is just that these results more or less confirmed what we knew before and therefore I was where I had been already (and not in a worse place).
We spent half term away in Wales and I felt pretty much myself by the end of the week – the weather was warm and sunny. My surgery scars were and still are sore – not all the time but they are not comfortable – and the scar under the arm is the worst. He took out 6 lymph nodes. What has been most annoying though has been what I now know is called ‘cording’. Under my left arm it looks and feels as if they have sown up the cut too tightly as there are these ‘cord’ looking things under the skin which make it difficult for me to stretch my arm out, they run right down my arm beyond my elbow and are very uncomfortable. When I told Lynette she said they did not really know exactly what they were but they were quite normal. They are something to do with the lymph nodes that are no longer there – it is as if they are the remains of the drainage tubes that ran from the lymph nodes – and they have died and so gone all hard and fibrous. Her instructions were to break them. Ouch…..take pain killers and try and walk my arms down the role and break them – ‘you can sometimes even hear them ping’. She said if I was not able to do it myself then the oncologist we were booked to see on the Tuesday after half term would do so for me. Well I spent a couple of evenings after a pain killer trying uselessly to break them – so decided to wait for the oncologist. I think of all the post surgery pain these have caused me the most trouble – they are horrible.
Then – on our last day in Wales during a furious game of stuck in the mud (I was an observer) between Rupert and the kids Rupert pulled something in his foot very hard. He hobbled for the rest of the day, drove down to Brighton that night and even went to work the next day. He came home early in pain and I took him to the urgent care centre in A&E as his foot did look particularly swollen. He was there for about 3 hours and has ‘a meaty fracture’ in his foot – more specifically he has ‘done a David Beckham’ which allegedly is quite difficult to do and you have to be quite fit to exert that pressure to get this type of fracture (according to Rupert!). He was booked into the fracture clinic the next morning by a lovely male nurse who felt sorry for him when Rupert explained why this was such bad timing. He is now home with a big boot instead of a cast and hobbling around feeling very frustrated.
On Tuesday 8th I went into work in London day – I worked that week as I felt fine except for local discomfort. It was strange getting ready early as if it was a normal workday, catching my normal train as I have done so many times – but as I sat there I knew it wasn’t normal and I was pinned to my seat for a short while as I realised it would never be normal in the way it had. Everything around me, thoughts and plans are different. Conversations are no longer the same, for me at least, they are laced with some other meaning – most of the time I don’t want to delve too deep into the long term, and in the short term I cannot plan normally simply because of the uncertainty about my treatment so I have been working on a day by day and week by week plan. I have not been able to confirm anything we had pencilled in that might have happened over the next few months. Our summer holiday plans to go to Spain have been cancelled; our plans to go to my cousin Grizzles wedding in France are on hold; Tims 40th; Ellas birthday plans; our grand plan to visit Sally Ann in New York for her 80th over Toms birthday. Work have been incredibly supportive but again I have had a short term plan to cover me over the recent 2 weeks – but without certainty about what next we have been working on a week by week plan.
Over the longer term despite the likelihood that everything will be fine I have a concrete risk that it might not – and I am trying to digest it. I would like to think that I will just get back to things as they were – but then something has contributed to my getting this so we will need to reflect. I had started writing a book (I was in the very early stages – and we are not talking booker prize stuff – but light easy reading) – about a woman reaching 40 – a light reflection on the ageing process – here is a line from chapter one (there is only one chapter at this point):
‘Anyway – the point being that at 19 I was just setting out in life. That was 20 years ago and look at where I am now. I am not so worried about where I am now but where I will be in another 20 years. I will be 59. FIFTY NINE. That means I will be entering my sixtieth decade. How did that happen? I know it has not actually happened yet – but 20 years no longer seems such a long time.’
Well, my book doesn’t seem so light anymore. On my train journey to work I sat opposite a beautiful woman who must have been in her early 60s, her face was lined and her hair well kept but thin and greying – and all I thought was ‘I hope I am that old one day’.
I honestly don’t spend my time thinking about this all – but over the last few weeks I have done a few times.
The oncologist
We met the oncologist on Tuesday 8th. He was lovely – and talked to me as if I was the first woman who had ever got breast cancer. He described the process of being diagnosed with cancer and the time afterwards a bit like being in a car which starts going off the road, danger lights flashing, windscreen wipers going. You pull over, adrenaline pumping, you fiddle with knobs and buttons and deal with the immediate emergency – and then once this is over and things have stopped flashing, adrenaline slows and you look around and realise the car is still broken down and you are in the middle of no where off the road. He must meet so many people who have gone through the same set of thoughts and feelings. He also described it as bereavement – and this is what is feels like to me. A bit like with bereavement - at first it is very acute and you think about it all the time, when you make a cup of tea, answer the phone, go shopping and then over time it gets less acute, you think about it but not all the time and eventually you learn to live with it (I am not there yet).
We went through my results and discussed the treatment options. I will definitely have radiotherapy – 4 weeks (usually it is 3 weeks but for younger women as our breasts are more dense we get an extra week). I will also definitely take tamoxifen for 5 years and possibly something else after that. And then we discussed chemotherapy. He talked through the risks of someone of my age with my results – and it went something like this (it is quite crude but is designed to help decision making using a database of American women):
Out of 100 women – with no additional therapy (except surgery) – 10 will not be alive in 10 years – 2 will die from other causes and 8 from cancer. Tamoxifen decreases this by 2 women – so 6 are not alive in 10 years from cancer – and chemotherapy decreases this by 2 also. Combined therapy (tamoxifen and chemo) therefore reduce the 8 dead to cancer to 4 by 10 years. Well – that was definitely enough for us. If it were to come back I would want for the kids sake to know that I did everything I could to prevent it coming back – and if it came back and I had not had chemo I could not bear to think that I might have done something to prevent it and I did not. I think if I were in my 60s I might think differently but every year over then next 10-15 while the kids are still kids seems that much more precious.
Chemotherapy
We did not make our decision then, but went home and talked about it and discussed it with some family and friends. I went to see Lynette the next morning to discuss the details and I am booked in for my first Chemo session (of 6) on Tuesday 15th. I will have 6 cycles of FEC 75 over a period of 18 weeks – so my last session will be the very end of September. Each day after the chemo I will have an injection to keep my white blood count up. All of these have a range of rather nasty side effects – fatigue, sore mouth and ulcers, nausea, joint ache, hair lost, pain and more. I have been given my own chemo record book which I must carry around.
I am going to try the cold cap – this is a cap that you put on your head before during and after the chemo drugs are being injected and they freeze your head below zero – the idea being that you keep your hair – at least prevent it all coming out. Many women cannot bear the cold cap so I have been told to prepare to lose it but I may not. FEC 75 is one of the types of chemo that many women do lose their hair. Apparently you lose your eyebrows, eyelashes, pubic and underarm hair but not leg hair (very strange). So even if the cold cap works I will have hair on my head but no where else (at least almost no where).
Before we left the oncologist he had a go at breaking the cording under my arm which is causing me such annoyance and discomfort. He pressed very hard and suddenly and there was a loud crunching noise – and he broke a few of them – but more remain. You should have heard it – it was quite disgusting. Rupert was sitting on the other side of the room on the other side of the curtain and he could hear it from there.
Port
In preparation for the chemo I was admitted as a day patient on Friday to have a port inserted in my chest (which involved a general anaesthetic). A port is something they place under the skin in the muscle of the chest. It has a tube running from it down a vein which runs directly into my heart. This is for the chemo drugs which can burn the veins in the arm. Going through the port straight into a major vein dilutes the drugs quicker. I have this uncomfortable lump on my right handside – currently covered by a large plaster – which is a flat volcano shape. They will stick a needle into the skin in the hole at the top of it and feed the chemo drugs intravenously through it. I can swim with it and basically get on normally – except for at the moment when it feels really obvious – sticking out of my chest. The car seat belt runs over it which is painful – but it should calm down within a week. I have to wear a band on my wrist and carry a card showing I have a port in situ.
The operation to insert the port was straightforward but I was in the hospital all day – I thought it would take a couple of hours and had no idea it would mean a general. Luckily I opened a letter the morning of the procedure, before I had eaten anything, instructing me not to eat or drink anything.
Knowing I would be put to sleep I asked if they could have another go at breaking my damn cords at the same time. The vascular surgeon who inserted the port had clearly been asked this before as he was fine with this strange request. When he came to see me after I had come round he told me they had had a go and broken some – but that it was quite a fight (I have lots of bruising under there now - lovely). What a day.
I am now getting myself ready for Tuesday. My Mum is going to come and take me and stay with me. I have been looking at websites where women who are undergoing chemo for breast cancer talk to each other about their experiences. So far I have only read the chats of American women (who interestingly, even with the same set of results as me, all seem to have stronger chemo regimes and more cycles). They are basically discussions about a range of horrible side effects – which they all refer to as ‘SE’! They all discuss the various medications to help with the SEs – it is very medical focused. I am going to find a UK site – which I bet will be full of discussions about supplements and natural strategies to mitigate the side effects.
I have had so much advice and ideas about ways to improve nutrition/diet about supplements. I have so far been sent 3 books from different people about different diets and approaches to fight cancer which I am looking forward to reading. A mother from school – who I have known for a while (but not well) sent me a huge document she had put together with a range of strategies and the evidence on which they are based. People are so amazing. The first involves getting a water filter and the second flax oil and quark. When I have the time I need to see a nutritionist to help me work out what I need to do and how to incorporate it easily into our life. I have bought myself some flax oil and haves started this regime to help with the chemo. A few things are non negotiable – my morning latte being one of them. I have though worked out that Pret makes them with organic milk.
It is late on Sunday night. I am going into work tomorrow to discuss how to deal with the next few months.
I have had such lovely messages, flowers, books and chocolates from people – I feel bad I have not been able to be in touch more. Things have been changing daily that it is quite hard to keep people up to date – so I hope this blog works and you don’t find it too long and boring. I also hope that future messages are not just full of sad stories of uncomfortable ‘SE’. I have some fake eyelashes and eyebrown pencils in preparation. As you may know my lovely Aunt Joanna is currently undergoing Chemotherapy for secondary ovarian cancer – she has been a huge comfort and I have followed her progress closely. It is quite unbelieveable that we will both be undergoing it at the same time. I was with her just last week – she had a rare trip out and we went to Boots to buy her some eyelashes and brows (so I knew which ones to choose). What a strange world.
Lou x
We went to see the breast consultant on the Thursday after Surgery – he examined his handiwork, removed the sterostrips and covered it again with another plaster and gave us the results from pathology. The tumor was 1.9cm – not 1 cm which it had been estimated at the initial examination (that means nearly 2 billion bad cells rather than 1 billion) – not sure how it hid in my not very large left breast as I used to semi examine myself when showering. We knew it was estrogen responsive – but found it was also progesterone responsive; it was not in the nodes, there was no vascular invasion and it was grade 2 all the way through. So this was not a bad set of results – it could not have been better from what we already knew about it and the surgeon and Mcmillian nurse Lynette actually allowed themselves to look and sound pleased about it. Usually they are so tight lipped and you stare at them trying to read something into their inscrutable faces but on this day they clearly enjoyed telling us these results.
Rupert was overwhelmed by this meeting and it was the first time he has really cried – in relief. I did not cry in relief – I suppose I have spent that much more time thinking and reading and I know that even women with my type of results die and so even though it is good that there is no obvious evidence of spread – they cannot say that there is no cancer – they can say that it is likely that there is no cancer. I certainly feel positive about these results – it is just that these results more or less confirmed what we knew before and therefore I was where I had been already (and not in a worse place).
We spent half term away in Wales and I felt pretty much myself by the end of the week – the weather was warm and sunny. My surgery scars were and still are sore – not all the time but they are not comfortable – and the scar under the arm is the worst. He took out 6 lymph nodes. What has been most annoying though has been what I now know is called ‘cording’. Under my left arm it looks and feels as if they have sown up the cut too tightly as there are these ‘cord’ looking things under the skin which make it difficult for me to stretch my arm out, they run right down my arm beyond my elbow and are very uncomfortable. When I told Lynette she said they did not really know exactly what they were but they were quite normal. They are something to do with the lymph nodes that are no longer there – it is as if they are the remains of the drainage tubes that ran from the lymph nodes – and they have died and so gone all hard and fibrous. Her instructions were to break them. Ouch…..take pain killers and try and walk my arms down the role and break them – ‘you can sometimes even hear them ping’. She said if I was not able to do it myself then the oncologist we were booked to see on the Tuesday after half term would do so for me. Well I spent a couple of evenings after a pain killer trying uselessly to break them – so decided to wait for the oncologist. I think of all the post surgery pain these have caused me the most trouble – they are horrible.
Then – on our last day in Wales during a furious game of stuck in the mud (I was an observer) between Rupert and the kids Rupert pulled something in his foot very hard. He hobbled for the rest of the day, drove down to Brighton that night and even went to work the next day. He came home early in pain and I took him to the urgent care centre in A&E as his foot did look particularly swollen. He was there for about 3 hours and has ‘a meaty fracture’ in his foot – more specifically he has ‘done a David Beckham’ which allegedly is quite difficult to do and you have to be quite fit to exert that pressure to get this type of fracture (according to Rupert!). He was booked into the fracture clinic the next morning by a lovely male nurse who felt sorry for him when Rupert explained why this was such bad timing. He is now home with a big boot instead of a cast and hobbling around feeling very frustrated.
On Tuesday 8th I went into work in London day – I worked that week as I felt fine except for local discomfort. It was strange getting ready early as if it was a normal workday, catching my normal train as I have done so many times – but as I sat there I knew it wasn’t normal and I was pinned to my seat for a short while as I realised it would never be normal in the way it had. Everything around me, thoughts and plans are different. Conversations are no longer the same, for me at least, they are laced with some other meaning – most of the time I don’t want to delve too deep into the long term, and in the short term I cannot plan normally simply because of the uncertainty about my treatment so I have been working on a day by day and week by week plan. I have not been able to confirm anything we had pencilled in that might have happened over the next few months. Our summer holiday plans to go to Spain have been cancelled; our plans to go to my cousin Grizzles wedding in France are on hold; Tims 40th; Ellas birthday plans; our grand plan to visit Sally Ann in New York for her 80th over Toms birthday. Work have been incredibly supportive but again I have had a short term plan to cover me over the recent 2 weeks – but without certainty about what next we have been working on a week by week plan.
Over the longer term despite the likelihood that everything will be fine I have a concrete risk that it might not – and I am trying to digest it. I would like to think that I will just get back to things as they were – but then something has contributed to my getting this so we will need to reflect. I had started writing a book (I was in the very early stages – and we are not talking booker prize stuff – but light easy reading) – about a woman reaching 40 – a light reflection on the ageing process – here is a line from chapter one (there is only one chapter at this point):
‘Anyway – the point being that at 19 I was just setting out in life. That was 20 years ago and look at where I am now. I am not so worried about where I am now but where I will be in another 20 years. I will be 59. FIFTY NINE. That means I will be entering my sixtieth decade. How did that happen? I know it has not actually happened yet – but 20 years no longer seems such a long time.’
Well, my book doesn’t seem so light anymore. On my train journey to work I sat opposite a beautiful woman who must have been in her early 60s, her face was lined and her hair well kept but thin and greying – and all I thought was ‘I hope I am that old one day’.
I honestly don’t spend my time thinking about this all – but over the last few weeks I have done a few times.
The oncologist
We met the oncologist on Tuesday 8th. He was lovely – and talked to me as if I was the first woman who had ever got breast cancer. He described the process of being diagnosed with cancer and the time afterwards a bit like being in a car which starts going off the road, danger lights flashing, windscreen wipers going. You pull over, adrenaline pumping, you fiddle with knobs and buttons and deal with the immediate emergency – and then once this is over and things have stopped flashing, adrenaline slows and you look around and realise the car is still broken down and you are in the middle of no where off the road. He must meet so many people who have gone through the same set of thoughts and feelings. He also described it as bereavement – and this is what is feels like to me. A bit like with bereavement - at first it is very acute and you think about it all the time, when you make a cup of tea, answer the phone, go shopping and then over time it gets less acute, you think about it but not all the time and eventually you learn to live with it (I am not there yet).
We went through my results and discussed the treatment options. I will definitely have radiotherapy – 4 weeks (usually it is 3 weeks but for younger women as our breasts are more dense we get an extra week). I will also definitely take tamoxifen for 5 years and possibly something else after that. And then we discussed chemotherapy. He talked through the risks of someone of my age with my results – and it went something like this (it is quite crude but is designed to help decision making using a database of American women):
Out of 100 women – with no additional therapy (except surgery) – 10 will not be alive in 10 years – 2 will die from other causes and 8 from cancer. Tamoxifen decreases this by 2 women – so 6 are not alive in 10 years from cancer – and chemotherapy decreases this by 2 also. Combined therapy (tamoxifen and chemo) therefore reduce the 8 dead to cancer to 4 by 10 years. Well – that was definitely enough for us. If it were to come back I would want for the kids sake to know that I did everything I could to prevent it coming back – and if it came back and I had not had chemo I could not bear to think that I might have done something to prevent it and I did not. I think if I were in my 60s I might think differently but every year over then next 10-15 while the kids are still kids seems that much more precious.
Chemotherapy
We did not make our decision then, but went home and talked about it and discussed it with some family and friends. I went to see Lynette the next morning to discuss the details and I am booked in for my first Chemo session (of 6) on Tuesday 15th. I will have 6 cycles of FEC 75 over a period of 18 weeks – so my last session will be the very end of September. Each day after the chemo I will have an injection to keep my white blood count up. All of these have a range of rather nasty side effects – fatigue, sore mouth and ulcers, nausea, joint ache, hair lost, pain and more. I have been given my own chemo record book which I must carry around.
I am going to try the cold cap – this is a cap that you put on your head before during and after the chemo drugs are being injected and they freeze your head below zero – the idea being that you keep your hair – at least prevent it all coming out. Many women cannot bear the cold cap so I have been told to prepare to lose it but I may not. FEC 75 is one of the types of chemo that many women do lose their hair. Apparently you lose your eyebrows, eyelashes, pubic and underarm hair but not leg hair (very strange). So even if the cold cap works I will have hair on my head but no where else (at least almost no where).
Before we left the oncologist he had a go at breaking the cording under my arm which is causing me such annoyance and discomfort. He pressed very hard and suddenly and there was a loud crunching noise – and he broke a few of them – but more remain. You should have heard it – it was quite disgusting. Rupert was sitting on the other side of the room on the other side of the curtain and he could hear it from there.
Port
In preparation for the chemo I was admitted as a day patient on Friday to have a port inserted in my chest (which involved a general anaesthetic). A port is something they place under the skin in the muscle of the chest. It has a tube running from it down a vein which runs directly into my heart. This is for the chemo drugs which can burn the veins in the arm. Going through the port straight into a major vein dilutes the drugs quicker. I have this uncomfortable lump on my right handside – currently covered by a large plaster – which is a flat volcano shape. They will stick a needle into the skin in the hole at the top of it and feed the chemo drugs intravenously through it. I can swim with it and basically get on normally – except for at the moment when it feels really obvious – sticking out of my chest. The car seat belt runs over it which is painful – but it should calm down within a week. I have to wear a band on my wrist and carry a card showing I have a port in situ.
The operation to insert the port was straightforward but I was in the hospital all day – I thought it would take a couple of hours and had no idea it would mean a general. Luckily I opened a letter the morning of the procedure, before I had eaten anything, instructing me not to eat or drink anything.
Knowing I would be put to sleep I asked if they could have another go at breaking my damn cords at the same time. The vascular surgeon who inserted the port had clearly been asked this before as he was fine with this strange request. When he came to see me after I had come round he told me they had had a go and broken some – but that it was quite a fight (I have lots of bruising under there now - lovely). What a day.
I am now getting myself ready for Tuesday. My Mum is going to come and take me and stay with me. I have been looking at websites where women who are undergoing chemo for breast cancer talk to each other about their experiences. So far I have only read the chats of American women (who interestingly, even with the same set of results as me, all seem to have stronger chemo regimes and more cycles). They are basically discussions about a range of horrible side effects – which they all refer to as ‘SE’! They all discuss the various medications to help with the SEs – it is very medical focused. I am going to find a UK site – which I bet will be full of discussions about supplements and natural strategies to mitigate the side effects.
I have had so much advice and ideas about ways to improve nutrition/diet about supplements. I have so far been sent 3 books from different people about different diets and approaches to fight cancer which I am looking forward to reading. A mother from school – who I have known for a while (but not well) sent me a huge document she had put together with a range of strategies and the evidence on which they are based. People are so amazing. The first involves getting a water filter and the second flax oil and quark. When I have the time I need to see a nutritionist to help me work out what I need to do and how to incorporate it easily into our life. I have bought myself some flax oil and haves started this regime to help with the chemo. A few things are non negotiable – my morning latte being one of them. I have though worked out that Pret makes them with organic milk.
It is late on Sunday night. I am going into work tomorrow to discuss how to deal with the next few months.
I have had such lovely messages, flowers, books and chocolates from people – I feel bad I have not been able to be in touch more. Things have been changing daily that it is quite hard to keep people up to date – so I hope this blog works and you don’t find it too long and boring. I also hope that future messages are not just full of sad stories of uncomfortable ‘SE’. I have some fake eyelashes and eyebrown pencils in preparation. As you may know my lovely Aunt Joanna is currently undergoing Chemotherapy for secondary ovarian cancer – she has been a huge comfort and I have followed her progress closely. It is quite unbelieveable that we will both be undergoing it at the same time. I was with her just last week – she had a rare trip out and we went to Boots to buy her some eyelashes and brows (so I knew which ones to choose). What a strange world.
Lou x