Saturday, 17 August 2013
After Glastonbury things looked a
little less shiny for a bit. I started taking the Tamoxifen - a
tablet I have to take every day for the next five years. It's to
level out my hormones and inhibit any oestrogen spikes. Because my
cancer was hormone receptive a spike could set it off again.
Tamoxifen has a list of side effects as long as your arm, the doctors
aren't interested in talking about them for at least three months -
it takes that long for your body to settle into them.
I cried off and on for the first two weeks. I also found it hard to accept the fatigue having done so well through the radio. Depression is a side effect of Tamoxifen but it's also a side effect of cancer and one I've tried so hard to fight. I went to Hospital and had my scars checked out, all signs of infection had gone and they were very pleased with how well I'd tolerated such a long course of radiotherapy.
I spoke to my oncologist about my prognosis. They have a computer program that estimates your survival stats. The Oncologist puts in all your data - sex, age, weight, other medical problems, type of cancer, size/grade/stage of tumour, lymph involvement, all the treatment you have - even the specific types of chemotherapy drug and doses. (plus lots of other personal bits and bobs which I've forgotten) Then it gives you a percentage chance of surviving the next five years.
Five years seems to be the benchmark. If your cancer hasn't come back in five years there's a pretty good chance it won't come back in ten. The computer program starts by telling you what your chances would be without any intervention based on your personal data and cancer details. Obviously mine was 0% - a sobering thought. Each part of the treatment adds to your chances. I'm currently bobbing somewhere between the 75 - 80% chance of surviving the next five years.
Now, I know that this is based on statistics but these are accurate statistics taking into account all relevant knowledge of my personal situation. My chances are good but they're not fantastic and that takes some getting used to. My Oncologist helpfully pointed out that my cancer wouldn't come back 70-80% It either wouldn't come back at all or it would come back 100% so the stats mean nothing really.
Most of the time I can carry on and try my hardest to lead a normal life. But when I wake at night and can't get back to sleep I have a number 5 rolling around in my head. One in 5 chance of developing lymphadoema in my left arm, One in 5 chance of dying in the next 5 years.
During this whole sorry nightmare I have become institutionalised by the Hospital. It has crept up on me, I've only noticed it since my radiotherapy finished. I have been only too aware that things might stop going well at any point but while I was in and out of hospital week in week out I felt safe. Surely the cancer couldn't return while all those wonderful Doctors were keeping such a close eye on me.
Suddenly I'm hardly ever there. I still go every three weeks for my herceptin but now that my body has got used to it I can take the full dose in half an hour. I don't have check ups, I don't have blood tests. I'll be back in September for a heart scan and I'll speak to someone at some point about my Tamoxifen side effects but I basically feel dropped. I have to wait a year for any further surgery due to scar tissue. I cant help but be constantly nervous that something is going to happen and no-one will notice before it's too late. Luckily I have the girls to distract me.
This is a hard blog to write and I've been putting it off for nearly two months. Now that I've broached some of the more painful moments I can write about things I enjoy thinking about more. I still haven't worked out whether it would be a good idea for me to seek some sort of council for the morbid but realistic thoughts or if its better to continue to ignore them as much as possible. I know that sounds unhealthy but most of the time it works for me.
In family news, we are moving back to our house in London. My Husband's clever 'Thailand' contract comes to an end soon and in September he'll be returning to full time work. He's tried commuting from Kent but his hours are sometimes long and late and he's gotten used to spending time with his girls as the primary parent during the harsher parts of my treatment. He would find it incredibly hard to give up that daily parenting. The girls are gutted to be leaving their little school but excited about rekindling previous friendships.
We move on the weekend of late August's bank holiday. Eldest daughter's birthday weekend. We have only ever moved house over her Birthday weekend! The thought of tearing apart the home and packing it all up into boxes again fills me with dread. The thought of going home and starting again is tentatively exciting. Things have a funny way of working out and I'm seeing this whole move to Kent from a slightly different angle, I'm pleased that I don't have memories of all the illness attached to my own house. During our year away, more friends have moved to the area. Really good, close friends. I'm going to be in good hands.
I cried off and on for the first two weeks. I also found it hard to accept the fatigue having done so well through the radio. Depression is a side effect of Tamoxifen but it's also a side effect of cancer and one I've tried so hard to fight. I went to Hospital and had my scars checked out, all signs of infection had gone and they were very pleased with how well I'd tolerated such a long course of radiotherapy.
I spoke to my oncologist about my prognosis. They have a computer program that estimates your survival stats. The Oncologist puts in all your data - sex, age, weight, other medical problems, type of cancer, size/grade/stage of tumour, lymph involvement, all the treatment you have - even the specific types of chemotherapy drug and doses. (plus lots of other personal bits and bobs which I've forgotten) Then it gives you a percentage chance of surviving the next five years.
Five years seems to be the benchmark. If your cancer hasn't come back in five years there's a pretty good chance it won't come back in ten. The computer program starts by telling you what your chances would be without any intervention based on your personal data and cancer details. Obviously mine was 0% - a sobering thought. Each part of the treatment adds to your chances. I'm currently bobbing somewhere between the 75 - 80% chance of surviving the next five years.
Now, I know that this is based on statistics but these are accurate statistics taking into account all relevant knowledge of my personal situation. My chances are good but they're not fantastic and that takes some getting used to. My Oncologist helpfully pointed out that my cancer wouldn't come back 70-80% It either wouldn't come back at all or it would come back 100% so the stats mean nothing really.
Most of the time I can carry on and try my hardest to lead a normal life. But when I wake at night and can't get back to sleep I have a number 5 rolling around in my head. One in 5 chance of developing lymphadoema in my left arm, One in 5 chance of dying in the next 5 years.
During this whole sorry nightmare I have become institutionalised by the Hospital. It has crept up on me, I've only noticed it since my radiotherapy finished. I have been only too aware that things might stop going well at any point but while I was in and out of hospital week in week out I felt safe. Surely the cancer couldn't return while all those wonderful Doctors were keeping such a close eye on me.
Suddenly I'm hardly ever there. I still go every three weeks for my herceptin but now that my body has got used to it I can take the full dose in half an hour. I don't have check ups, I don't have blood tests. I'll be back in September for a heart scan and I'll speak to someone at some point about my Tamoxifen side effects but I basically feel dropped. I have to wait a year for any further surgery due to scar tissue. I cant help but be constantly nervous that something is going to happen and no-one will notice before it's too late. Luckily I have the girls to distract me.
This is a hard blog to write and I've been putting it off for nearly two months. Now that I've broached some of the more painful moments I can write about things I enjoy thinking about more. I still haven't worked out whether it would be a good idea for me to seek some sort of council for the morbid but realistic thoughts or if its better to continue to ignore them as much as possible. I know that sounds unhealthy but most of the time it works for me.
In family news, we are moving back to our house in London. My Husband's clever 'Thailand' contract comes to an end soon and in September he'll be returning to full time work. He's tried commuting from Kent but his hours are sometimes long and late and he's gotten used to spending time with his girls as the primary parent during the harsher parts of my treatment. He would find it incredibly hard to give up that daily parenting. The girls are gutted to be leaving their little school but excited about rekindling previous friendships.
We move on the weekend of late August's bank holiday. Eldest daughter's birthday weekend. We have only ever moved house over her Birthday weekend! The thought of tearing apart the home and packing it all up into boxes again fills me with dread. The thought of going home and starting again is tentatively exciting. Things have a funny way of working out and I'm seeing this whole move to Kent from a slightly different angle, I'm pleased that I don't have memories of all the illness attached to my own house. During our year away, more friends have moved to the area. Really good, close friends. I'm going to be in good hands.
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