Telling the Children
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Telling the Children
We told the older two first. We had waited until they were over their jet lag and had settled back at school. I had also wanted them to have seen me functioning pretty normally for a few days to set the scene, so they could reflect and see that it couldn’t be that bad if Mum and Dad were being so together about it. We had had supper and the little two were in bed – so Ella and Tom were with us in the kitchen. I said I was going to tell them something but they had to listen to me all the way through before they reacted – but we didn’t get past the words breast CANCER – and both burst into tears. Tom started wailing ‘Mummy I don’t want you to die, I don’t want you to die’. I carried on talking – telling them more of the detail and reassuring them that actually I was quite lucky as it was early and quite small and that it was hormone responsive which meant I would have these special pills which they know work really well to make sure it did not come back. We said that I needed to have an operation but that would be good as they would be taking the cancer out. We drew a line which represented bad stuff and one end was very bad and the other not so bad and I said how lucky we were that mine was at the not so bad end and that there are such good treatments these days and so many people who have had this and are doing really well now. I also told them to consider how I was – and would I really be sitting there talking to them calmly and to remember the past week – had I looked like someone who thought I was going to die? Ella could remember the mother of a friend of hers from Stanford (who is alive and well) and others and she rapidly calmed down and look in a funny way relieved. Tom was still sobbing and wanted to know if I would survive for long enough to have the operation. Their concept of time (and their fear of cancer) is so immediate.
Ella has since organised some charity run for macmillan and ordered a fundraising pack from breast cancer care. Tom went to find out more from the internet – something that I had not anticipated – they have access to so much information. He looked up the drug I was on (tamoxifen) and that was good – but he also read something about younger women having poorer outcomes. Hmmm.
We told the little two in two parts. The first was around the supper table one Sunday – to tell them Mummy would need to have an operation because she had found something bad in her booby and the doctors needed to take it out. Our amazing Macmillan nurse Lynette had told us that being specific was important so they could differentiate between an illness they might have and what was wrong with mummy. Ned’s reaction was ‘ooooh your boobie – yuck’. William then said ‘Ned if you had something that could kill you (note we had not used these words at all) on your willy would you not let them take it off because it was your willy’. There followed a conversation about the time there had been a sore willy episode (with 3 boys not infrequent) and the doctor had had to see it. And the conversation moved on. A few days later when they were in the bath I read them a book specially written for this purpose – called ‘Mummy’s lump’. It goes through each stage, deals with issues like Daddy may be sad sometimes and granny and grandpa might come and help sometimes etc and hair loss with chemo through to the final page when it is all over and the family are on the beach together on holiday. This was the first time William really worked out that it was something more than just a lump in the boob and asked if it killed people, I said sometimes, but that now they knew how to fight it and my one was one they knew lots about my type and there were really good doctors and medicines. He went very quiet and his eyes went pink and welled up. Ned was more upset about the possibility of me losing my hair – he said he did not mind about them taking out the lump but he did not want my hair to come out. That picture really got him. So lets hope that does not happen! If I do have chemo there is this cap they can put on your head which freezes your head to minus 5 and this can help stop the hair falling out – but we have been told some women find it so unbearable that we should not count on it.
The days before surgery
Rupert raced around like a mad thing preparing a sanctuary for me in our bedroom. He cleared all the sides so rather than cluttered and homely it actually looked minimalist and modern. His piece de resistance was the flat screen television – that he not only bought for me (the idea being to put it in the playroom when treatment is all over) but he successfully attached it to the wall in front of our bed which was a hugely complicated affair. The preparations for this had involved finding a man to put up an aerial with a connection in the room. When late on the night before the night of the operation – the TV was up but the connection did not seem to work – the mood in the house was indeed somber. But a new day, a cup of coffee and some random button pressing and it magically sorted itself just before we called the aerial man back to claim we had been done and that the connection simply didn’t work.
The day before surgery was strange. I had not been happy with the offending breast / nipple which once I had noticed the lump I also noticed that it was slightly sunken. Since I had found it and been diagnosed I had simply not wanted to look at it – but I did the day before surgery. It had served me quite well – feeding my babies among other things – and I thought I had better say my goodbyes. As the lump was right under the nipple I knew I was going to lose it. Until recently and in many places women with a tumour in the centre of the breast or under the nipple have a masectomy – but this surgeon was planning to keep as much tissue as he could – which meant he was proposing something he called a grizoty (not sure if spelt properly). This meant taking off the nipple and tumour (think apple corer) and reconstructing (ie filling the gap) using breast tissue from around the breast.
So I had a quick look, had a bath and went to bed with my bag packed.
Surgery
We had to be at the hospital at 7.15am so were up early – I could not eat or drink – and off we went. At the hospital we filled in some forms, spoke to the nurse and the anaesthetist came to visit and gave me anti nausea pills as I had once reacted badly to a general (rather I had been sick after it – funnily enough over 35 years ago when I had a cyst removed from the same breast). The surgeon came in with his black marker – think clearly technically competent but bedside manner zero. He was focusing on the logistics of the operation and speaking aloud – one of the technical challenges was the lack of tissue under my breast (‘as you do have small breasts’). He drew all over me and said the operation would be slightly more complicated because of the reconstruction they would have to do at the same time. I put on one of those gowns that do up at the back and got into bed.
In the instructions I had been given before the operation one of them had been to ‘remove nail varnish at home’. I had read this to mean if you are going to remove nail varnish remove it at home and not in the hospital. What it actually meant was you must remove your nail varnish – something about the anaesthetist needing to see the colour of your nails. So second before being wheeled in I was there removing nail varnish from my nails.
I was first on the list which was good. They wheeled me in – Rupert came as far as he could. I have not blubbed much during all of this – the first week but not since – but I did feeling like blubbing then – and worried that would get all snotty if I did and how would they be able to put be to sleep if I was snotty. But I was given the pre med quickly which distracted me – a nice floaty feeling – and within a very short time I was out.
I went in at about 8.40 and came round at about 11.15. My breast (what was left of it) felt sore and stingy so I started on my morphine pump early. I spent the morning with Rupert, who was there when I came round. I felt OK. He left me to sleep as I was falling in and out of sleep – and picked up the kids and brought them to see me after school. They met Lynette and spent a little time in my room but then went home and I just slept. I had the morphine up all night so was woken every hour to have my blood pressure taken. I stayed in the next day until the afternoon – feeling rather headachy – having been pumped with all sorts of chemicals. Anasthetic, radioactive blue dye for the sentinel node procedure; blood thining injection; 2 lots of intravenous antibiotics; morphine and anti nausea. I am sure these are what knock you out so much. Rupert came and took me home and set me up in my lovely room – which is now just full of flowers and organic chocolate and other goodies. We have been so overwhelmed by the amazing response of our family and friends. I have received letters and card and I have had lovely long phone conversations with friends I don’t talk to enough as we are all so busy. It has been quite amazing and I just feel so totally spoilt. Rupert has been absolutely amazing organising everything. My Mum has been down, so has my sister.
I am feeling more myself now – 6 days on but have a sore left arm and the wounds are still not comfortable. I took the plasters off yesterday – not very pretty – but only temporary. I will have wonders done to it when it is all over. I have had some very slow days but am more mobile every day.
What next…..
Our next big appointment is Thursday when we will see the surgeon who will be able to tell us the path results – what I hope for is that there was nothing in the lymphs, that the grade of the tumour was no more than the 2 that they found at the biopsy, that it does not look raggedy round the edges and that they got good clear margins so don’t need to do any more surgery. If any of these are not as good as this then this will influence my treatment next. I will see the oncologist next – not sure when but soon after the surgeon…..
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We told the older two first. We had waited until they were over their jet lag and had settled back at school. I had also wanted them to have seen me functioning pretty normally for a few days to set the scene, so they could reflect and see that it couldn’t be that bad if Mum and Dad were being so together about it. We had had supper and the little two were in bed – so Ella and Tom were with us in the kitchen. I said I was going to tell them something but they had to listen to me all the way through before they reacted – but we didn’t get past the words breast CANCER – and both burst into tears. Tom started wailing ‘Mummy I don’t want you to die, I don’t want you to die’. I carried on talking – telling them more of the detail and reassuring them that actually I was quite lucky as it was early and quite small and that it was hormone responsive which meant I would have these special pills which they know work really well to make sure it did not come back. We said that I needed to have an operation but that would be good as they would be taking the cancer out. We drew a line which represented bad stuff and one end was very bad and the other not so bad and I said how lucky we were that mine was at the not so bad end and that there are such good treatments these days and so many people who have had this and are doing really well now. I also told them to consider how I was – and would I really be sitting there talking to them calmly and to remember the past week – had I looked like someone who thought I was going to die? Ella could remember the mother of a friend of hers from Stanford (who is alive and well) and others and she rapidly calmed down and look in a funny way relieved. Tom was still sobbing and wanted to know if I would survive for long enough to have the operation. Their concept of time (and their fear of cancer) is so immediate.
Ella has since organised some charity run for macmillan and ordered a fundraising pack from breast cancer care. Tom went to find out more from the internet – something that I had not anticipated – they have access to so much information. He looked up the drug I was on (tamoxifen) and that was good – but he also read something about younger women having poorer outcomes. Hmmm.
We told the little two in two parts. The first was around the supper table one Sunday – to tell them Mummy would need to have an operation because she had found something bad in her booby and the doctors needed to take it out. Our amazing Macmillan nurse Lynette had told us that being specific was important so they could differentiate between an illness they might have and what was wrong with mummy. Ned’s reaction was ‘ooooh your boobie – yuck’. William then said ‘Ned if you had something that could kill you (note we had not used these words at all) on your willy would you not let them take it off because it was your willy’. There followed a conversation about the time there had been a sore willy episode (with 3 boys not infrequent) and the doctor had had to see it. And the conversation moved on. A few days later when they were in the bath I read them a book specially written for this purpose – called ‘Mummy’s lump’. It goes through each stage, deals with issues like Daddy may be sad sometimes and granny and grandpa might come and help sometimes etc and hair loss with chemo through to the final page when it is all over and the family are on the beach together on holiday. This was the first time William really worked out that it was something more than just a lump in the boob and asked if it killed people, I said sometimes, but that now they knew how to fight it and my one was one they knew lots about my type and there were really good doctors and medicines. He went very quiet and his eyes went pink and welled up. Ned was more upset about the possibility of me losing my hair – he said he did not mind about them taking out the lump but he did not want my hair to come out. That picture really got him. So lets hope that does not happen! If I do have chemo there is this cap they can put on your head which freezes your head to minus 5 and this can help stop the hair falling out – but we have been told some women find it so unbearable that we should not count on it.
The days before surgery
Rupert raced around like a mad thing preparing a sanctuary for me in our bedroom. He cleared all the sides so rather than cluttered and homely it actually looked minimalist and modern. His piece de resistance was the flat screen television – that he not only bought for me (the idea being to put it in the playroom when treatment is all over) but he successfully attached it to the wall in front of our bed which was a hugely complicated affair. The preparations for this had involved finding a man to put up an aerial with a connection in the room. When late on the night before the night of the operation – the TV was up but the connection did not seem to work – the mood in the house was indeed somber. But a new day, a cup of coffee and some random button pressing and it magically sorted itself just before we called the aerial man back to claim we had been done and that the connection simply didn’t work.
The day before surgery was strange. I had not been happy with the offending breast / nipple which once I had noticed the lump I also noticed that it was slightly sunken. Since I had found it and been diagnosed I had simply not wanted to look at it – but I did the day before surgery. It had served me quite well – feeding my babies among other things – and I thought I had better say my goodbyes. As the lump was right under the nipple I knew I was going to lose it. Until recently and in many places women with a tumour in the centre of the breast or under the nipple have a masectomy – but this surgeon was planning to keep as much tissue as he could – which meant he was proposing something he called a grizoty (not sure if spelt properly). This meant taking off the nipple and tumour (think apple corer) and reconstructing (ie filling the gap) using breast tissue from around the breast.
So I had a quick look, had a bath and went to bed with my bag packed.
Surgery
We had to be at the hospital at 7.15am so were up early – I could not eat or drink – and off we went. At the hospital we filled in some forms, spoke to the nurse and the anaesthetist came to visit and gave me anti nausea pills as I had once reacted badly to a general (rather I had been sick after it – funnily enough over 35 years ago when I had a cyst removed from the same breast). The surgeon came in with his black marker – think clearly technically competent but bedside manner zero. He was focusing on the logistics of the operation and speaking aloud – one of the technical challenges was the lack of tissue under my breast (‘as you do have small breasts’). He drew all over me and said the operation would be slightly more complicated because of the reconstruction they would have to do at the same time. I put on one of those gowns that do up at the back and got into bed.
In the instructions I had been given before the operation one of them had been to ‘remove nail varnish at home’. I had read this to mean if you are going to remove nail varnish remove it at home and not in the hospital. What it actually meant was you must remove your nail varnish – something about the anaesthetist needing to see the colour of your nails. So second before being wheeled in I was there removing nail varnish from my nails.
I was first on the list which was good. They wheeled me in – Rupert came as far as he could. I have not blubbed much during all of this – the first week but not since – but I did feeling like blubbing then – and worried that would get all snotty if I did and how would they be able to put be to sleep if I was snotty. But I was given the pre med quickly which distracted me – a nice floaty feeling – and within a very short time I was out.
I went in at about 8.40 and came round at about 11.15. My breast (what was left of it) felt sore and stingy so I started on my morphine pump early. I spent the morning with Rupert, who was there when I came round. I felt OK. He left me to sleep as I was falling in and out of sleep – and picked up the kids and brought them to see me after school. They met Lynette and spent a little time in my room but then went home and I just slept. I had the morphine up all night so was woken every hour to have my blood pressure taken. I stayed in the next day until the afternoon – feeling rather headachy – having been pumped with all sorts of chemicals. Anasthetic, radioactive blue dye for the sentinel node procedure; blood thining injection; 2 lots of intravenous antibiotics; morphine and anti nausea. I am sure these are what knock you out so much. Rupert came and took me home and set me up in my lovely room – which is now just full of flowers and organic chocolate and other goodies. We have been so overwhelmed by the amazing response of our family and friends. I have received letters and card and I have had lovely long phone conversations with friends I don’t talk to enough as we are all so busy. It has been quite amazing and I just feel so totally spoilt. Rupert has been absolutely amazing organising everything. My Mum has been down, so has my sister.
I am feeling more myself now – 6 days on but have a sore left arm and the wounds are still not comfortable. I took the plasters off yesterday – not very pretty – but only temporary. I will have wonders done to it when it is all over. I have had some very slow days but am more mobile every day.
What next…..
Our next big appointment is Thursday when we will see the surgeon who will be able to tell us the path results – what I hope for is that there was nothing in the lymphs, that the grade of the tumour was no more than the 2 that they found at the biopsy, that it does not look raggedy round the edges and that they got good clear margins so don’t need to do any more surgery. If any of these are not as good as this then this will influence my treatment next. I will see the oncologist next – not sure when but soon after the surgeon…..
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