It's back.
I haven't posted in a long while but here I am again. To tell you the bad news: my cancer is back, in my bones and in my liver. It's metastasized breast cancer spread, and that means that it is 100% fatal.
The fact that it's in the liver is the Bad Thing. It's not treatable, because of the extent of the spread, and because it's breast cancer in the liver. I will have anywhere between a few months and maybe two years.
I've been having big problems with my back for a year now. Pain in the ribs mainly, and in the mid spine, for which I was getting all this massage and osteopathic treatment. And then in March, I came down with a stomach flu that others had, but I didn't recover. I was nauseous, couldn't eat much, lost weight, felt fatigued, and generally run down. After a while I thought.. that's not normal. I went to the doctor and had tests, expecting to find I had maybe an ulcer or gut infection of some sort.. and they found the cancer after a CT scan.
The good news, and it really IS good news, is that death from breast cancer metastases is very very different from how it was even five years ago. There are new treatments available, and they can keep me at 80% or so of full health for almost all of my remaining time. I won't have that slow steady decline into bedridden pain, my spine won't collapse, and I won't be in pain. So they tell me.
I will mainly be fatigued, it seems.
I've finished work.. taken advantage of an insurance policy that I had the foresight to take out a year ago, which pays about 65% of my salary for two years - almost exactly enough time and enough to pay the bills.
I am of course feeling pretty terrible.. depressed, devastated, and trying to wrap my head around what's happening. Julian is the same. We're spending a lot of time *this* close to tears, just managing to cope. And a lot of time actually in tears, of course.
Important: I have absolutely no interest whatsoever in cures. Please do not send them to me. No gurus, no self help books, no miracle teas, no amazing cancer cures.
Why?
I have the best medical team available in Australia.. my oncologist is head of oncology at St Vincents, and I have access to every single latest treatment there is, and every possible palliative offering available.
There is no cure. There isn't anything just around the corner. Extending my life isn't the goal, because new treatments for this condition aren't on the horizon,not anywhere close. For that to be a hope, I'd need to live at least ten years and that just isn't going to happen.
So it's very important not to tell me about cures and teas that dissolve cancer and diets and meditation and stuff. I will do everything necessary that my medical team recommends to keep my state of wellbeing as high as possible, and nothing more.
I'm told that diet has little effect on wellbeing at this point, other than just monitoring how different foods affect my fatigue levels. Mainly it seems that red meat and very rich foods aren't that great, but most other things are fine. I can even have a drink or two, which is nice.
Exercise is okay, but only a little just to keep my body moving, or it ends up fatiguing me.
Meditation is fine if it makes me feel better. I do meditate anyway, but I'm not going to do two hours a day or anything.
We're getting counselling to help process all of this emotion.
The biggest problem I have is what to actually do with my time. When my future has been taken from me, what do I aim for? You don't realise until it's gone how much small goals and longer range goals inform what you do every day. I keep thinking i will write, but the urge hasn't come upon me. It kind of seems irrelevant.
The other interesting thing is that I'm seeing my life held up to me as a mirror. In the five years since I was first diagnosed, I've made a great many changes to how I live. The biggest one is that I have many many more people in it now. I have a big circle of friends and the support and loving care they're showing me is incredible and humbling.
Things not to say to me:
- have hope
- you can beat this
- be strong
- think positive.
I have hope, but my hope is for a relatively high quality of life for the period that I have left to me, not for some miracle cure. I can't beat this, so telling me that only makes me cranky.
Be strong? Why? Who for? I will be as frail and fragile and upset and angry as I need to be, so that in between, I can find as much joy and pleasure as I can.
And think positive is the WORST thing you can say. This is a phrase people know about cancer, and it's actually deeply misunderstood.
There is research that shows a tiny tiny survival advantage for people with curable cancers, who "Think positive". In that context, thinking positive means something very specific: it means people who think they can live, as opposed to people who think oh, i have cancer so that means I will die.
It doesn't mean that you're cheerful and that you are upbeat and that you constantly put on a brave face. None of that has any effect at all on survival or recurrence rates.. my guess is it would have the opposite effect, always working so hard to damp down natural emotions.
I reserve the right to be cranky and depressed and upset, and telling me that I should "think positive" will make me want to punch the person who says it in the nose. Heh.
Treatments.
As soon as they gave me the news I got treatments. I have several at the moment.
First, I have a drug that has largely stopped the liver symptoms I had (nausea, loss of appetite, weight loss and fatigue).
I'm eating properly again, and that is such a comfort.
Second, I have a bone drug, which I take as two tablets a day. This is truly miraculous. It's been used for years for other conditions but in the last couple of years cancer patients get it, and what it does is stop the bones from collapsing. Years ago, as I said earlier, you'd expect your spine or legs to snap or crumble and you'd lie in bed in agony until you died. Now, you take these drugs, and it doesn't happen.
Third, I'm on hormones (called Femara). My cancer is oestrogen receptive and this drug is an aromatase inhibitor, which prevents oestrogen being made in my body and bonding with the cancer cells. If this works it will inhibit the spread of the cancer and that will affect my wellbeing. I had a blood test this week to see if it's working but it wasn't. The doctor said I have to have the test again, because on top of all this I also had a chest infection for which I had an antibiotic, and that may have affected the readings. If it's not working, then they'll switch me to a second line chemotherapy drug.
I can't have the same chemo as last time, because all the cancers that would respond to those drugs have been killed off, leaving the ones that don't respond. So the new chemo will be a less devastatingly horrible one, though it would still make my hair fall out and make me feel sick. But it will give me a huge boost in wellbeing after that for a long period, it seems.
And third, I have radiation therapy starting next week, which is five treatments on my spine and on my thigh. I have a small area of cancer in my right thigh but they're concerned that it's weight bearing and want to shrink it if possible.
After the radiation treatment, Julian and I are going to Queensland for a week to chill out, and I'm going to get millions of stupid spa treatments, the sillier the better.. mud wraps and sea salts and so forth that have no effect at all but are indulgent and nice to do.
I've worked out that having something to look forward to in the next few weeks is really really important. It lets me focus on that rather than on the negative stuff.
The most amazing thing that's come out of this so far is that my relationship with Julian has been stripped to its bedrock. As if you had a sculpture encased in a mass of decorations and distractions, and then you remove all of that, to see what's beneath. And what's revealed is so pure in its beauty it's breathtaking. I feel so joyous about that and grateful that I have this in my life, for however short a time.
Okay. That's the news.. i'll come back and update from time to time.
The fact that it's in the liver is the Bad Thing. It's not treatable, because of the extent of the spread, and because it's breast cancer in the liver. I will have anywhere between a few months and maybe two years.
I've been having big problems with my back for a year now. Pain in the ribs mainly, and in the mid spine, for which I was getting all this massage and osteopathic treatment. And then in March, I came down with a stomach flu that others had, but I didn't recover. I was nauseous, couldn't eat much, lost weight, felt fatigued, and generally run down. After a while I thought.. that's not normal. I went to the doctor and had tests, expecting to find I had maybe an ulcer or gut infection of some sort.. and they found the cancer after a CT scan.
The good news, and it really IS good news, is that death from breast cancer metastases is very very different from how it was even five years ago. There are new treatments available, and they can keep me at 80% or so of full health for almost all of my remaining time. I won't have that slow steady decline into bedridden pain, my spine won't collapse, and I won't be in pain. So they tell me.
I will mainly be fatigued, it seems.
I've finished work.. taken advantage of an insurance policy that I had the foresight to take out a year ago, which pays about 65% of my salary for two years - almost exactly enough time and enough to pay the bills.
I am of course feeling pretty terrible.. depressed, devastated, and trying to wrap my head around what's happening. Julian is the same. We're spending a lot of time *this* close to tears, just managing to cope. And a lot of time actually in tears, of course.
Important: I have absolutely no interest whatsoever in cures. Please do not send them to me. No gurus, no self help books, no miracle teas, no amazing cancer cures.
Why?
I have the best medical team available in Australia.. my oncologist is head of oncology at St Vincents, and I have access to every single latest treatment there is, and every possible palliative offering available.
There is no cure. There isn't anything just around the corner. Extending my life isn't the goal, because new treatments for this condition aren't on the horizon,not anywhere close. For that to be a hope, I'd need to live at least ten years and that just isn't going to happen.
So it's very important not to tell me about cures and teas that dissolve cancer and diets and meditation and stuff. I will do everything necessary that my medical team recommends to keep my state of wellbeing as high as possible, and nothing more.
I'm told that diet has little effect on wellbeing at this point, other than just monitoring how different foods affect my fatigue levels. Mainly it seems that red meat and very rich foods aren't that great, but most other things are fine. I can even have a drink or two, which is nice.
Exercise is okay, but only a little just to keep my body moving, or it ends up fatiguing me.
Meditation is fine if it makes me feel better. I do meditate anyway, but I'm not going to do two hours a day or anything.
We're getting counselling to help process all of this emotion.
The biggest problem I have is what to actually do with my time. When my future has been taken from me, what do I aim for? You don't realise until it's gone how much small goals and longer range goals inform what you do every day. I keep thinking i will write, but the urge hasn't come upon me. It kind of seems irrelevant.
The other interesting thing is that I'm seeing my life held up to me as a mirror. In the five years since I was first diagnosed, I've made a great many changes to how I live. The biggest one is that I have many many more people in it now. I have a big circle of friends and the support and loving care they're showing me is incredible and humbling.
Things not to say to me:
- have hope
- you can beat this
- be strong
- think positive.
I have hope, but my hope is for a relatively high quality of life for the period that I have left to me, not for some miracle cure. I can't beat this, so telling me that only makes me cranky.
Be strong? Why? Who for? I will be as frail and fragile and upset and angry as I need to be, so that in between, I can find as much joy and pleasure as I can.
And think positive is the WORST thing you can say. This is a phrase people know about cancer, and it's actually deeply misunderstood.
There is research that shows a tiny tiny survival advantage for people with curable cancers, who "Think positive". In that context, thinking positive means something very specific: it means people who think they can live, as opposed to people who think oh, i have cancer so that means I will die.
It doesn't mean that you're cheerful and that you are upbeat and that you constantly put on a brave face. None of that has any effect at all on survival or recurrence rates.. my guess is it would have the opposite effect, always working so hard to damp down natural emotions.
I reserve the right to be cranky and depressed and upset, and telling me that I should "think positive" will make me want to punch the person who says it in the nose. Heh.
Treatments.
As soon as they gave me the news I got treatments. I have several at the moment.
First, I have a drug that has largely stopped the liver symptoms I had (nausea, loss of appetite, weight loss and fatigue).
I'm eating properly again, and that is such a comfort.
Second, I have a bone drug, which I take as two tablets a day. This is truly miraculous. It's been used for years for other conditions but in the last couple of years cancer patients get it, and what it does is stop the bones from collapsing. Years ago, as I said earlier, you'd expect your spine or legs to snap or crumble and you'd lie in bed in agony until you died. Now, you take these drugs, and it doesn't happen.
Third, I'm on hormones (called Femara). My cancer is oestrogen receptive and this drug is an aromatase inhibitor, which prevents oestrogen being made in my body and bonding with the cancer cells. If this works it will inhibit the spread of the cancer and that will affect my wellbeing. I had a blood test this week to see if it's working but it wasn't. The doctor said I have to have the test again, because on top of all this I also had a chest infection for which I had an antibiotic, and that may have affected the readings. If it's not working, then they'll switch me to a second line chemotherapy drug.
I can't have the same chemo as last time, because all the cancers that would respond to those drugs have been killed off, leaving the ones that don't respond. So the new chemo will be a less devastatingly horrible one, though it would still make my hair fall out and make me feel sick. But it will give me a huge boost in wellbeing after that for a long period, it seems.
And third, I have radiation therapy starting next week, which is five treatments on my spine and on my thigh. I have a small area of cancer in my right thigh but they're concerned that it's weight bearing and want to shrink it if possible.
After the radiation treatment, Julian and I are going to Queensland for a week to chill out, and I'm going to get millions of stupid spa treatments, the sillier the better.. mud wraps and sea salts and so forth that have no effect at all but are indulgent and nice to do.
I've worked out that having something to look forward to in the next few weeks is really really important. It lets me focus on that rather than on the negative stuff.
The most amazing thing that's come out of this so far is that my relationship with Julian has been stripped to its bedrock. As if you had a sculpture encased in a mass of decorations and distractions, and then you remove all of that, to see what's beneath. And what's revealed is so pure in its beauty it's breathtaking. I feel so joyous about that and grateful that I have this in my life, for however short a time.
Okay. That's the news.. i'll come back and update from time to time.