Two years ago today, 9th November, my mom died.
I've been wondering, what's the right thing to do on the anniversary of your mother's death? It should be marked in some way, shouldn't it?
Last year I went to the crematorium where her funeral was, to look at her name in the book. It seemed like the right thing to do, but it wasn't a nice thing to do. Her name looked weird in the book. It was the only name on a brand new page for 9th November. It looked quite lonely there all by itself. Had some food in the café at the crematorium. That wasn't nice either. A group of noisy, self absorbed twats and their (I'm sorry, but, horrendously bratty) children turned up for lunch, apparently completely oblivious to their surroundings - ie a crematorium, a place where funerals take place, where ashes are scattered, where people are mourned. I wanted to scream at them but I just didn't have the energy. And a year after my mom's death, it still felt like yesterday. I'd only just come to the end of dealing with all the practicalities of it. Probate. Emptying and selling her house. It had been an absolute nightmare, completely taken over my life for a year, and run me in to the ground. I was at the beginning of a meltdown that had been a year coming but which I'd had to put on hold because there was so much to do, and I had to do it. End of. Getting to the one year anniversary of her death felt like a milestone. No more one-year-anniversary-of's or first-since-she-died's to get through (Christmas, new year, her birthday, my birthday, the dog's birthday (!), the weekend I knew something was seriously wrong, the day she went in to hospital, the day she died etc). The first anniversary of her death was a big deal.
That first year had been all about her. This past year, on the other hand, has been all about me. After the one year anniversary, I realised I was completely wiped out. Exhausted. I'd been far too stressed for far too long. There had been so much going on, I hadn't taken time to grieve, or make sense of what happened. So I took some time off work. Went to counselling at Coping with Cancer - to help me deal with the bereavement, but also to work through the implications of my family history of cancer, the genetic testing process I was going through, and my high risk of getting breast or ovarian cancer myself. A lot of time spent thinking about life and death. I've lost count of the number of times very recently where I've shouted "YOLO!" as an excuse to eat too much/drink too much/spend too much/behave like an idiot. But in all seriousness, you do only live once. And it's this past year that that's really hit home. And that was before I was diagnosed with cancer. It's strange but I think my mom's death and going through genetic testing prepared me very well for my own cancer diagnosis this July. I've said before, it was a shock, but it wasn't a surprise. I'd been expecting it (just not quite yet). So when I was told I had cancer, I spent 3 days shocked and stunned, and then... I dunno, just got on with things. I have my moments when I think this isn't fair, or when I am jealous of people without cancer (I'm currently going through a phase of being very jealous of other people's hair). But most of the time I am just glad to be alive. Glad to feel like I have some perspective and my priorities are right. And I know my own mind. I know what I want. I know that the only person who can make me happy is me. I know that while things will happen that are out of my control, I do have a choice in how I react to them (apart from, it seems, in the first 7-10 days after a blast of chemo..... but apart from then, I have a choice!)
Anyway, recently, when I've thought about my mom, I've wondered what she would make of it all, if she could see me now. A year after my mom's death, it felt like yesterday. Two years after my mom's death and it feels like a lifetime ago. So much has changed since she died. I have changed since she died.
So, what's the right thing to do today? I don't want to go and look at her name in the book. I don't want to grieve. I don't want to do some forced celebration of her life, just because it's the anniversary of her death. I think I'm just going to have a normal day, like any other. I'm not sure if it's the right thing to do, but I've decided that's what I'm going to do.
Sunday, 9 November 2014
Thursday, 6 November 2014
My favourite Week 3 so far
Those of you who know me or who have been reading my blog know that when you're having chemo, Week 3 is the good week. This is my fourth Week 3 and I think it's already my favourite so far.
First of all, now that the side effects from chemo #4 have all gone (I'm not in pain! My mouth and throat are back to normal! The Dementors have pissed off!) I feel like I really have finished chemo #4 and so have now officially completed two thirds of chemo. YEAHHHHHH! Four down and only two to go. Woop woop! (If all is on schedule, then in just 27 days I will be having my LAST CHEMO!)
Secondly, having now had the first of three of the Tax chemos, I'm no longer anxious about Tax. It wasn't nice, but then neither was FEC. And given the choice, I think I'd choose to be having another Tax next week rather than another FEC. My veins are doing ok. There's no sickness and nausea. And I only need to keep the awful head freezer on for 2 hours and 15 minutes. I can do this! I might come home from the hospital accompanied by some Dementors, convinced that you all hate me, and that I'm an idiot and an embarrassment just for being me. I might have a mouth that tastes like dirty underpants. I might feel like I've been beaten up and it might feel like someone poured acid down my throat. But: What-everrrrrrr. If it's shit, it's shit, but at least now I know from experience that I can do it, I can get through it. And once the next one is done, there's only ONE LEFT! And after that, the rest of my cancer treatment seems easy peasy lemon squeezy.
(Make no mistake - as it gets nearer, I will start shitting myself about surgery. But for now I can think rationally about it, and the reality is this: after chemo I will have some weeks of normality while my body is left in peace to get back to full strength. I can carry on with work and life like the rest of you. This includes drinking lots of snowballs and eating lots of roast dinners over Christmas! Then I guess some time in January I have surgery, and some weeks of recovery and healing after that. And then it's radiotherapy - which from what I gather is more of an inconvenience than anything else. For a few weeks I'll need to go to the hospital every day for around half an hour - but I'm lucky because the hospital is only a 15 minute walk from home and work. And it won't make me ill. So it will just be a daily chore. And then... I think that's about it. My window of opportunity for milking going through cancer treatment for all it's worth will be over.)
Thirdly, because the first scary Tax chemo was the day after I got the results, and then I was immediately ill, I'm only just now getting to really appreciate that my CT scan was clear. This morning I was talking with a friend and she said something about how it's awful that I have cancer, and chemo is complete bullshit, but at least I know I'm going to be ok. I realised it was the first time in a conversation like this that I really felt like that was true. I didn't start thinking about how I might be riddled with cancer, and might be about to die. There will always be a risk of recurrence, there will always be a bit of anxiety about it. But seeing as everything is in my favour (small tumour, only one lymph node affected, slow growing, not aggressive etc) it seems like it would be a waste of my time to worry about it any more.
Fourth reason I am loving this Week 3... It's a busy one - both having fun, and getting stuff done. It feels like ages now, what with chemo side effects and the cough and cold I thought would never end, since I have felt completely well. I do now! I'm being productive at work, at home, and about things I care about (more on that another time). I can exercise again! I'm catching up with friends. On Saturday I'm off to London to meet up with lots of the YBCN women to eat, drink and bemerry cool as fuck superwomen. I can't wait!
I really feel like celebrating! As it happens, I'm meeting a friend for a drink tonight, so maybe I'll make mine something bubbly... why not?!
XO
First of all, now that the side effects from chemo #4 have all gone (I'm not in pain! My mouth and throat are back to normal! The Dementors have pissed off!) I feel like I really have finished chemo #4 and so have now officially completed two thirds of chemo. YEAHHHHHH! Four down and only two to go. Woop woop! (If all is on schedule, then in just 27 days I will be having my LAST CHEMO!)
Secondly, having now had the first of three of the Tax chemos, I'm no longer anxious about Tax. It wasn't nice, but then neither was FEC. And given the choice, I think I'd choose to be having another Tax next week rather than another FEC. My veins are doing ok. There's no sickness and nausea. And I only need to keep the awful head freezer on for 2 hours and 15 minutes. I can do this! I might come home from the hospital accompanied by some Dementors, convinced that you all hate me, and that I'm an idiot and an embarrassment just for being me. I might have a mouth that tastes like dirty underpants. I might feel like I've been beaten up and it might feel like someone poured acid down my throat. But: What-everrrrrrr. If it's shit, it's shit, but at least now I know from experience that I can do it, I can get through it. And once the next one is done, there's only ONE LEFT! And after that, the rest of my cancer treatment seems easy peasy lemon squeezy.
(Make no mistake - as it gets nearer, I will start shitting myself about surgery. But for now I can think rationally about it, and the reality is this: after chemo I will have some weeks of normality while my body is left in peace to get back to full strength. I can carry on with work and life like the rest of you. This includes drinking lots of snowballs and eating lots of roast dinners over Christmas! Then I guess some time in January I have surgery, and some weeks of recovery and healing after that. And then it's radiotherapy - which from what I gather is more of an inconvenience than anything else. For a few weeks I'll need to go to the hospital every day for around half an hour - but I'm lucky because the hospital is only a 15 minute walk from home and work. And it won't make me ill. So it will just be a daily chore. And then... I think that's about it. My window of opportunity for milking going through cancer treatment for all it's worth will be over.)
Thirdly, because the first scary Tax chemo was the day after I got the results, and then I was immediately ill, I'm only just now getting to really appreciate that my CT scan was clear. This morning I was talking with a friend and she said something about how it's awful that I have cancer, and chemo is complete bullshit, but at least I know I'm going to be ok. I realised it was the first time in a conversation like this that I really felt like that was true. I didn't start thinking about how I might be riddled with cancer, and might be about to die. There will always be a risk of recurrence, there will always be a bit of anxiety about it. But seeing as everything is in my favour (small tumour, only one lymph node affected, slow growing, not aggressive etc) it seems like it would be a waste of my time to worry about it any more.
Fourth reason I am loving this Week 3... It's a busy one - both having fun, and getting stuff done. It feels like ages now, what with chemo side effects and the cough and cold I thought would never end, since I have felt completely well. I do now! I'm being productive at work, at home, and about things I care about (more on that another time). I can exercise again! I'm catching up with friends. On Saturday I'm off to London to meet up with lots of the YBCN women to eat, drink and be
I really feel like celebrating! As it happens, I'm meeting a friend for a drink tonight, so maybe I'll make mine something bubbly... why not?!
XO
Monday, 3 November 2014
Whirlwind
I've frequently heard having cancer described as a journey or a rollercoaster.
Nope. Both wrong.
A journey is travel from one place to another - journey implies a destination and I think it kind of implies some sort of logic (or attempted logic) in direction of travel. Unless you count being kidnapped against your will, and transported around indefinitely, with no idea how you are getting to where you are going or indeed even where you are going, then I wouldn't consider cancer as a journey.
And while it has ups and downs, I can't consider cancer a rollercoaster. I bloody love rollercoasters. I'm possibly at my happiest when I'm being zoomed around upside down and sideways on a rollercoaster with my arms in the air, screaming my head off. Cancer just isn't that much fun.
Not a journey. Not a rollercoaster. It's a whirlwind.
It's unstable, turbulent, dangerous, damaging. You'd like to think that there is some sort of predictability to what will go on, some sort of pattern, but actually the whole experience is very unpredictable. And the whirlwind itself is accompanied by various other storms too. Your world, that you spent your life building and creating, is suddenly ripped apart. It happens out of the blue, and fast. Before you've even had chance to comprehend that a whirlwind just struck, you're seeing a ground zero in the place that used to be your world.
You check yourself and realise that you're injured, but they're all injuries that can be healed. You're shocked and scared, but look around and see you're surrounded by people. They include your best friends, as well as people you didn't know that well but who have turned up anyway wanting to help, along with some complete strangers. Some have come carrying blankets and cups of tea, some have brought first aid kits, some are armed with hard hats and construction materials. Despite how overwhelming the whole situation is, despite some days being a complete blur, you know you will remember forever who were the people that were there by your side when disaster struck.
So now you have a choice. Sit around, helplessly looking at the mess, mourning everything you lost. Or, occasional meltdown and tantrum aside, take it as an opportunity to build a fucking ace new world. (I am going with the latter. Obvs.)
Rebuilding is a big job, hard work, takes time, and of course there are points when you're tired, in pain and overwhelmed. (That's when you need those friends with the first aid kits, blankets and cups of tea.) But it's also a really exciting challenge. You get to create a new world. One you can design from scratch, that is perfect for you, that you love to be in. It will be stronger than the last one - you've learned from experience that whirlwinds can strike so you can be much better prepared for any future storms. It will be fit for purpose - you have a much clearer sense of what you want from life and what is and isn't needed for that. Most importantly it will be a beautiful and welcoming world with plenty of room in it for all the other people that you know will make it even brighter, warmer, happier.
As for yourself... A few scars. A few lessons learned. A bit stronger. A clearer perspective. A bit more faith in yourself. A lot of love for a lot of people. A precious life... and this time with an understanding of just how precious it is.
Anyway, better get back to the building site.
Nope. Both wrong.
A journey is travel from one place to another - journey implies a destination and I think it kind of implies some sort of logic (or attempted logic) in direction of travel. Unless you count being kidnapped against your will, and transported around indefinitely, with no idea how you are getting to where you are going or indeed even where you are going, then I wouldn't consider cancer as a journey.
And while it has ups and downs, I can't consider cancer a rollercoaster. I bloody love rollercoasters. I'm possibly at my happiest when I'm being zoomed around upside down and sideways on a rollercoaster with my arms in the air, screaming my head off. Cancer just isn't that much fun.
Not a journey. Not a rollercoaster. It's a whirlwind.
It's unstable, turbulent, dangerous, damaging. You'd like to think that there is some sort of predictability to what will go on, some sort of pattern, but actually the whole experience is very unpredictable. And the whirlwind itself is accompanied by various other storms too. Your world, that you spent your life building and creating, is suddenly ripped apart. It happens out of the blue, and fast. Before you've even had chance to comprehend that a whirlwind just struck, you're seeing a ground zero in the place that used to be your world.
You check yourself and realise that you're injured, but they're all injuries that can be healed. You're shocked and scared, but look around and see you're surrounded by people. They include your best friends, as well as people you didn't know that well but who have turned up anyway wanting to help, along with some complete strangers. Some have come carrying blankets and cups of tea, some have brought first aid kits, some are armed with hard hats and construction materials. Despite how overwhelming the whole situation is, despite some days being a complete blur, you know you will remember forever who were the people that were there by your side when disaster struck.
So now you have a choice. Sit around, helplessly looking at the mess, mourning everything you lost. Or, occasional meltdown and tantrum aside, take it as an opportunity to build a fucking ace new world. (I am going with the latter. Obvs.)
Rebuilding is a big job, hard work, takes time, and of course there are points when you're tired, in pain and overwhelmed. (That's when you need those friends with the first aid kits, blankets and cups of tea.) But it's also a really exciting challenge. You get to create a new world. One you can design from scratch, that is perfect for you, that you love to be in. It will be stronger than the last one - you've learned from experience that whirlwinds can strike so you can be much better prepared for any future storms. It will be fit for purpose - you have a much clearer sense of what you want from life and what is and isn't needed for that. Most importantly it will be a beautiful and welcoming world with plenty of room in it for all the other people that you know will make it even brighter, warmer, happier.
As for yourself... A few scars. A few lessons learned. A bit stronger. A clearer perspective. A bit more faith in yourself. A lot of love for a lot of people. A precious life... and this time with an understanding of just how precious it is.
Anyway, better get back to the building site.
Friday, 31 October 2014
Expecto Patronum
Last week I had a bit of a whinge about chemo blues. I'd gone in to my 4th chemo last Wednesday (my first of a drug called Docetaxel, or Tax) with the incredible news that my CT scan was clear - no cancer beyond the first lymph node. I came out completely and utterly miserable. I asked others in the Younger Breast Cancer Network group about this and immediately discovered I was far from alone. Tax is generous in dishing out misery, blues, anxiety, oversensitivity, self esteem attacks, tears. The YBCN experts explained why this is. After Tax chemo the Dementors come for you, sucking away your hope and your happiness.
So I've spent the last week commanding "EXPECTO PATRONUM!" over and over again, accompanied by masterful flourishes of my arm.... but still no Patronum.
I'm no fool. I know exactly what the problem is. Remus was very clear about this. For Expecto Patronum to work, you have to be concentrating with all your might on a single, very happy memory.
How can I concentrate on a single very happy memory when my mind is overflowing with countless very miserable shit? This applies as much when I am asleep right now as it does when I'm awake. I'm seriously getting on my own nerves. I keep finding myself moaning and complaining to people. Every time I try and sit down to write about something positive or purposeful (there's a bunch of good stuff I want to write about), I go off on increasingly negative tangents. Delete, delete, delete. I said a while ago how writing is cathartic. So I've decided that instead of repeatedly trying to be positive, and repeatedly spoiling it by blurting out woes, as if I've got some Annoying Miserable Whinger form of Tourette's, I'm going to do a massive offloading here of everything that's upsetting me. Think of it as a projectile vomit of all the nasties that are making me emotionally ill, into the expansive toilet that is the internet. Clicking on "Publish" at the end of this = "Flush".
Before I get going though, there's one rule, and I mean it. If you read this (and to be honest, maybe you shouldn't, this is just a self-indulgent moanfest with no other purpose than me letting off steam. But if you do...) you're not allowed to aim any sympathy or anything like that in my direction. I'm permitting myself to go full on negative beyond this paragraph because just for now, I need to, but the truth is for everything I moan about own situation, plenty of people have it far worse than me. I'm lucky and I've got loads to be happy about, I just need to have a rant so that I can get back to feeling like that. So, read on if you want, but no response required.
Here goes.
This isn't me trying to stick with a Harry Potter theme throughout this entire post, it just happens that this is my current reality. When I look in the mirror now, this is who I see:
Except my eyebrows aren't so good. Fucking chemo, killing my hair follicles. Fucking cold cap, not working on the top of my head. Without a wig and makeup, I now look like a cancer patient who is trying to look like a balding man who can't accept his hair loss. Great. Makes me feel just fucking great. Might as well just go and hide in a dark cave for the next few months.
I'm sick of being ill. I'm especially fed up because every time I get better, I inevitably immediately get ill again. And I have no choice. I've been horrendously physically sick. Half the veins in my arms have become hardened, inflamed, weak and burst. I've passed out several times. I've had a cold and cough that lasted a month. I've got oral thrush in the back of my mouth and throat which fucking hurts, a LOT, and has given me a new cough to boot. I've bled from places I shouldn't bleed from. I've had hardcore indigestion. Fuck knows when I last had a decent night sleep. I've had endless days where my skin hurts. Endless days where my bones hurt. I'm tired. I'm sick of being ill. And I have to put myself through this twice more. And that's before I go in to hospital and let a surgeon spend 12 hours on me with a knife.
I'm sick of having nightmares about my mom. I can hazard a good guess as to why this has kicked off. It's almost 2 years since she died, so I guess it's on my mind. The week she died was a week from absolute hell. I fucking hate cancer, and I hate what it did to her. After 6 years of fighting cancer and suffering through the endless bullshit that is cancer "treatment" this is what happened. 3rd November she came round to my house with a headache. 5th November she was admitted to hospital and had a brain scan. Late that evening I was told that her cancer had spread to the lining of her brain and that she'd have maybe 3-4 months to live. 6th November she was unconscious all day - she'd had some seizures in the night and was knocked out on anti-seizure medication. 7th November I spent the day with her in hospital, pretending everything was ok because her oncologist wasn't at that hospital that day to talk to her and explain. So 8th November is when she was told herself that the cancer had spread to the lining of the brain. She wanted to be left alone, and went to sleep. 9th November she died. That's it in a nutshell, but the full version of that story includes a lot more horror (like being stood outside her hospital room talking to a nurse, to hear the nurse who was in with my mom call for help and set off loud alarms which had about 10 other nurses and doctors race in there, while I am sent away to the "quiet room").
Unfortunately, if I dream about my mom it's never nice. It never gets to be a nice dream, where something nice happens. It's always weird and stressful. And I've been dreaming about her every night. This morning I woke up at 4.44am. I spent a couple of hours lying awake, too unhappy to get back to sleep, too ill to get out of bed. When I finally did manage to get to sleep, it was for a staggering half an hour, where I had a dream that my mom had humiliated me in front of my friends, and I woke up crying. Just fucking great.
I'm sick of cancer and chemo taking over my life, and me. I don't want to be a cancer patient. I want to be me. I want to be the best version of me. I want the freedom to be able to show me at my best. But all I've got to offer is me at my worst. I don't even like myself right now. And I feel like an idiot. I'm normally good at reading social cues but I dread to think how many times over the last few months I've misread them. Can't distinguish sympathy and kindness from anything else any more. I'm an idiot. I'm annoying. I'm weak. I'm sorry for every time I've been an irritating nightmare. Every time I've been a fucking burden. Every time I've embarrassed myself. Every time I've been too self absorbed to pay attention to others. Every time I've not been able to get a grip.
I need to go away now, have a massive cry, and then rebuild myself. Start again.
(Remember the rule now.)
FLUSH.
So I've spent the last week commanding "EXPECTO PATRONUM!" over and over again, accompanied by masterful flourishes of my arm.... but still no Patronum.
I'm no fool. I know exactly what the problem is. Remus was very clear about this. For Expecto Patronum to work, you have to be concentrating with all your might on a single, very happy memory.
How can I concentrate on a single very happy memory when my mind is overflowing with countless very miserable shit? This applies as much when I am asleep right now as it does when I'm awake. I'm seriously getting on my own nerves. I keep finding myself moaning and complaining to people. Every time I try and sit down to write about something positive or purposeful (there's a bunch of good stuff I want to write about), I go off on increasingly negative tangents. Delete, delete, delete. I said a while ago how writing is cathartic. So I've decided that instead of repeatedly trying to be positive, and repeatedly spoiling it by blurting out woes, as if I've got some Annoying Miserable Whinger form of Tourette's, I'm going to do a massive offloading here of everything that's upsetting me. Think of it as a projectile vomit of all the nasties that are making me emotionally ill, into the expansive toilet that is the internet. Clicking on "Publish" at the end of this = "Flush".
Before I get going though, there's one rule, and I mean it. If you read this (and to be honest, maybe you shouldn't, this is just a self-indulgent moanfest with no other purpose than me letting off steam. But if you do...) you're not allowed to aim any sympathy or anything like that in my direction. I'm permitting myself to go full on negative beyond this paragraph because just for now, I need to, but the truth is for everything I moan about own situation, plenty of people have it far worse than me. I'm lucky and I've got loads to be happy about, I just need to have a rant so that I can get back to feeling like that. So, read on if you want, but no response required.
Here goes.
This isn't me trying to stick with a Harry Potter theme throughout this entire post, it just happens that this is my current reality. When I look in the mirror now, this is who I see:
I'm sick of being ill. I'm especially fed up because every time I get better, I inevitably immediately get ill again. And I have no choice. I've been horrendously physically sick. Half the veins in my arms have become hardened, inflamed, weak and burst. I've passed out several times. I've had a cold and cough that lasted a month. I've got oral thrush in the back of my mouth and throat which fucking hurts, a LOT, and has given me a new cough to boot. I've bled from places I shouldn't bleed from. I've had hardcore indigestion. Fuck knows when I last had a decent night sleep. I've had endless days where my skin hurts. Endless days where my bones hurt. I'm tired. I'm sick of being ill. And I have to put myself through this twice more. And that's before I go in to hospital and let a surgeon spend 12 hours on me with a knife.
I'm sick of having nightmares about my mom. I can hazard a good guess as to why this has kicked off. It's almost 2 years since she died, so I guess it's on my mind. The week she died was a week from absolute hell. I fucking hate cancer, and I hate what it did to her. After 6 years of fighting cancer and suffering through the endless bullshit that is cancer "treatment" this is what happened. 3rd November she came round to my house with a headache. 5th November she was admitted to hospital and had a brain scan. Late that evening I was told that her cancer had spread to the lining of her brain and that she'd have maybe 3-4 months to live. 6th November she was unconscious all day - she'd had some seizures in the night and was knocked out on anti-seizure medication. 7th November I spent the day with her in hospital, pretending everything was ok because her oncologist wasn't at that hospital that day to talk to her and explain. So 8th November is when she was told herself that the cancer had spread to the lining of the brain. She wanted to be left alone, and went to sleep. 9th November she died. That's it in a nutshell, but the full version of that story includes a lot more horror (like being stood outside her hospital room talking to a nurse, to hear the nurse who was in with my mom call for help and set off loud alarms which had about 10 other nurses and doctors race in there, while I am sent away to the "quiet room").
Unfortunately, if I dream about my mom it's never nice. It never gets to be a nice dream, where something nice happens. It's always weird and stressful. And I've been dreaming about her every night. This morning I woke up at 4.44am. I spent a couple of hours lying awake, too unhappy to get back to sleep, too ill to get out of bed. When I finally did manage to get to sleep, it was for a staggering half an hour, where I had a dream that my mom had humiliated me in front of my friends, and I woke up crying. Just fucking great.
I'm sick of cancer and chemo taking over my life, and me. I don't want to be a cancer patient. I want to be me. I want to be the best version of me. I want the freedom to be able to show me at my best. But all I've got to offer is me at my worst. I don't even like myself right now. And I feel like an idiot. I'm normally good at reading social cues but I dread to think how many times over the last few months I've misread them. Can't distinguish sympathy and kindness from anything else any more. I'm an idiot. I'm annoying. I'm weak. I'm sorry for every time I've been an irritating nightmare. Every time I've been a fucking burden. Every time I've embarrassed myself. Every time I've been too self absorbed to pay attention to others. Every time I've not been able to get a grip.
I need to go away now, have a massive cry, and then rebuild myself. Start again.
(Remember the rule now.)
FLUSH.
Wednesday, 29 October 2014
Everything I've learned about... Tax (Docetaxel/Taxotere)
I originally wrote this post at the end of October 2014, 8 days after my first Tax.
I have added some more comments in blue text, on 15 December, 12 days after my third and final Tax.
I'm starting this post on day 8 after my first blast of Tax, so it's early days, and I will need to return to it to update and complete it. But I'd say over the last week it's the thing I've been asked the most about by women who are also going/going to be going through chemotherapy and know Tax is on the cards for them.
A quick recap: There are lots of different chemotherapy drugs and combinations of drugs. My personal chemo treatment is FEC-T. Three doses of FEC followed by three doses of Tax (Docetaxel/Taxotere). At the time of writing I've had my three FECs and one Tax.
A bad reputation
Women who are having a combination of FEC and Tax seem more often than not to start with FEC, followed by Tax (although it can be the other way round). Tax has a reputation for being the bad one. (I've heard several people say FEC is the Red Devil and Tax is her big, ugly sister.) So, many women like me start with FEC chemo, find it to be mean and horrible, and then begin to panic about and dread Tax because we've heard it's so much worse.
This bad reputation is not entirely fair. Whenever people ask the question "Is Tax worse than FEC?" in the Younger Breast Cancer Network (UK) group on Facebook the response is around half think FEC is the worst, around half think Tax is the worst. So, if Tax features in your future, it's probably not worth getting too worked up about it. There's as much chance you'll find it better than FEC as there is you'll find it worse than FEC.
I'm going to hazard a guess that part of the problem with Tax is that more often than not it seems to be given after FEC rather than before, meaning there is more time to get worried. Going through cancer diagnosis and treatment is an absolute fucker for leaving you spending lots of time in limbo, fearing the unknown. I know I'm far from alone in finding the times spent in limbo (wondering what various tests and scans are going to reveal, wondering what this or that treatment is going to do to me etc) the most difficult times of all.
Different side effects and timescales
While Tax might not necessarily be worse, it is very different when it comes to side effects. Different people have different experiences, and indeed the same person even tends to have different experiences with each blast of FEC and each blast of Tax. But these appear to be the most common differences between the two:
As of day 8 after my first Tax blast, I currently hate Tax and FEC in equal measure.
(And day 12 after my third and final Tax - I'd probably still say the same. Although if I was told I have to have one more chemo, but that I could choose FEC or Tax.... if I HAD to choose.... I think I'd choose Tax.)
My main FEC side effects were:
In comparison, this has been my experience of Tax so far:
I'll update when I have anything to add.
Final update 12 days after third Tax:
So this post tells you about my own experience of Tax. Everyone is a bit different. I think I was unlucky with the oral thrush but got off quite lightly otherwise. I haven't yet had any pain or problems with fingernails. A couple of my toenails look like they might drop off but I'm really not bothered. They'll grow back!
Another thing to mention is that while I lost most of my eyelashes and eyebrows on Tax, it's amazing what can be done with a bit of makeup. I went to a Look Good Feel Better session at the hospital and learned everything I need to know. I wrote about faking eyebrows and eyelashes in another post.
And the best part of Tax - the hair on my head has been growing back. A lot. It started to grow back as soon as I finished FEC. I think my own hair growth has been extra good because I continued to use the cold cap for every chemo. There's still a long way to go. The top of my head is horrendous! But at least it's growing back. And now I'm done with chemo altogether that should really pick up a lot more.
So, in conclusion - don't worry about Tax. Chemo isn't nice. Tax isn't nice. But you'll get through it.
I have added some more comments in blue text, on 15 December, 12 days after my third and final Tax.
I'm starting this post on day 8 after my first blast of Tax, so it's early days, and I will need to return to it to update and complete it. But I'd say over the last week it's the thing I've been asked the most about by women who are also going/going to be going through chemotherapy and know Tax is on the cards for them.
A quick recap: There are lots of different chemotherapy drugs and combinations of drugs. My personal chemo treatment is FEC-T. Three doses of FEC followed by three doses of Tax (Docetaxel/Taxotere). At the time of writing I've had my three FECs and one Tax.
A bad reputation
Women who are having a combination of FEC and Tax seem more often than not to start with FEC, followed by Tax (although it can be the other way round). Tax has a reputation for being the bad one. (I've heard several people say FEC is the Red Devil and Tax is her big, ugly sister.) So, many women like me start with FEC chemo, find it to be mean and horrible, and then begin to panic about and dread Tax because we've heard it's so much worse.
This bad reputation is not entirely fair. Whenever people ask the question "Is Tax worse than FEC?" in the Younger Breast Cancer Network (UK) group on Facebook the response is around half think FEC is the worst, around half think Tax is the worst. So, if Tax features in your future, it's probably not worth getting too worked up about it. There's as much chance you'll find it better than FEC as there is you'll find it worse than FEC.
I'm going to hazard a guess that part of the problem with Tax is that more often than not it seems to be given after FEC rather than before, meaning there is more time to get worried. Going through cancer diagnosis and treatment is an absolute fucker for leaving you spending lots of time in limbo, fearing the unknown. I know I'm far from alone in finding the times spent in limbo (wondering what various tests and scans are going to reveal, wondering what this or that treatment is going to do to me etc) the most difficult times of all.
Different side effects and timescales
While Tax might not necessarily be worse, it is very different when it comes to side effects. Different people have different experiences, and indeed the same person even tends to have different experiences with each blast of FEC and each blast of Tax. But these appear to be the most common differences between the two:
- The side effects from FEC kick in pretty quickly, and then ease off over time. My experience was generally that week 1 on FEC was a week of feeling ill and tired, week 2 was a lot better and week 3 I was completely back to normal. Tax is a bit different - physical side effects generally don't seem to start kicking in for people until day 3 or 4. So you get a bit of a false sense of security - and then it hits you.
- There's more of a risk of allergic reaction to Tax. This could happen during any one of your blasts. The nurses told me that if it was going to happen it would be during the first half hour of the drug being administered. No-one likes the thought of an allergic reaction - as someone who has had a severe allergic reaction to penicillin I was quite anxious about it. But you shouldn't worry. They keep a close eye on you and can stop it immediately if it happens. (And if you do have an allergic reaction to Tax, there are alternatives they give you.)
- Tax doesn't seem to make people sick, unlike FEC where nausea and sickness is a very common (and sometimes horrendous) side effect.
- Tax doesn't wreck your veins in the same way as FEC.
- Tax generally appears to be different when it comes to hair loss. It doesn't happen to everyone, but a lot of people find that their eyebrows and eyelashes thin significantly or disappear altogether on Tax, while the hair on their head often starts growing back.
- Common side effects of Tax are bone aches and pains, sore mouth/mouth ulcers, oral thrush, loss of taste.
As of day 8 after my first Tax blast, I currently hate Tax and FEC in equal measure.
(And day 12 after my third and final Tax - I'd probably still say the same. Although if I was told I have to have one more chemo, but that I could choose FEC or Tax.... if I HAD to choose.... I think I'd choose Tax.)
My main FEC side effects were:
- Vomiting and nausea
- Painful, hard, inflamed veins in my arms which caused problems every time anyone went near me with a needle (unfortunately a regular event when you're having cancer related tests and treatment)
- A sore, bruised feeling in my skin for a couple of days, around day 6.
- Hair loss. And, not exactly a side effect, but I have been using the cold cap to try and save my hair and that has to stay on for a full 3.5 hours on FEC. It pushed me to my absolute limit in terms of tolerance of self inflicted torture.
In comparison, this has been my experience of Tax so far:
- No vomiting or nausea. Point scored! (This was true for all 3 Tax cycles)
- No vein problems at all. Two points scored! (This was true for all 3 Tax cycles)
- Only had to have the cold cap on for 2 hours and 15 minutes. Point scored! (This was true for all 3 Tax cycles)
- Days 3/4 to today, painful bones. Days 4 and 5 were the absolute worst - but to be honest, I didn't really take much in terms of painkillers. Next time I will. The bone pains are not nice at all, they've been bad enough to seriously affect my sleep, but even so, once again I get the impression I got off quite lightly this time. I've heard so many other women describe it as feeling like they've been hit by a car or run over by a steam train, or that they can barely get out of bed without help because of the pain. Women who have ended up on prescription painkillers. So I think I've done ok, even though it's not been nice. Ultimately though, point lost. (The second cycle I had some bone pain, probably slightly worse than the first cycle. The third cycle of Tax - I didn't really get any aches or pains at all. I took a couple of lots of ibuprofen anticipating pain, then realised it never actually came, and didn't take any more!)
- Indigestion. I've had indigestion a lot, days 4-7. One night that kept me awake for several hours too. But again, I haven't taken anything for it so I shouldn't really complain! But still, point lost. (I had less indigestion on the second cycle - I think I was affected for a day or so. Third cycle - n oproblems with indigestion)
- My least favourite side effect of them all is that my mouth has turned into a disgusting, skanky pit of oral thrush. Sadly this is very, very common and can happen every time you have a Tax. Waaaaaaah! Again, I feel slightly guilty for moaning because again, I don't seem to have had it nearly as bad as others. I've no pain or ulcers and my tongue never reached thick, Brilliant White. But oh my days, the inside of my mouth is disgusting, and makes everything taste like how I'd imagine a dirty pair of pants to taste. I've now got treatment for the thrush and my tongue started returning to normal pink within hours, but apparently the taste problem is likely to stay with me throughout the whole of Tax. Two points lost, especially if this is going on during December (if I can't taste my Snowballs I am going to be PISSED OFF). (I got oral thrush every time and it is disgusting! I was given mouth drops called Nystan each time. They work but take a bit of time. I probably spent 7-10 days each cycle with a disgusting mouth.)
I'll update when I have anything to add.
Final update 12 days after third Tax:
So this post tells you about my own experience of Tax. Everyone is a bit different. I think I was unlucky with the oral thrush but got off quite lightly otherwise. I haven't yet had any pain or problems with fingernails. A couple of my toenails look like they might drop off but I'm really not bothered. They'll grow back!
Another thing to mention is that while I lost most of my eyelashes and eyebrows on Tax, it's amazing what can be done with a bit of makeup. I went to a Look Good Feel Better session at the hospital and learned everything I need to know. I wrote about faking eyebrows and eyelashes in another post.
And the best part of Tax - the hair on my head has been growing back. A lot. It started to grow back as soon as I finished FEC. I think my own hair growth has been extra good because I continued to use the cold cap for every chemo. There's still a long way to go. The top of my head is horrendous! But at least it's growing back. And now I'm done with chemo altogether that should really pick up a lot more.
So, in conclusion - don't worry about Tax. Chemo isn't nice. Tax isn't nice. But you'll get through it.
Tuesday, 28 October 2014
A letter to Dylan Sharpe, Head of PR at The Sun, about Page 3 and breast cancer awareness
Dear Dylan Sharpe, Head of PR at the Sun newspaper,
Two things caught my attention on Twitter this morning. The first was this tweet from The Sun:
The second was a notification that you yourself, The Sun's Head of PR, had tweeted me:
As a reminder, I just want to quickly go over the background. In August I wrote an Open Letter to The Sun about why their Page 3 Check 'em Tuesday Campaign upset me. A few weeks later I wrote on my blog again, asking you some questions about The Sun's recent call out for young-ish women to pose topless and talk about checking their breasts (Why can't The Sun raise awareness of breast cancer without Page 3 and topless models?). Needless to say, I didn't get a response.
Anyway, the two tweets above from this morning have prompted me to return to this debate here today.
First of all I just want to respond to what Kris Hallenga wrote about in her article in The Telegraph. Thank you for sending me a link. Kris describes how, at the time of the launch of Check 'em Tuesday, she received vicious comments online from women saying they hoped that she won’t recover from breast cancer and will go to an early grave. "One even accused me of “whacking a glamour magazine on the grave of every woman who has died from breast cancer”."
This is one of those situations where I would hope it goes without saying that I think comments like this are indeed vile and completely out of order. There's no place for hateful, vicious, personal attacks in debates about things like breast cancer awareness. But as you have pointedly tweeted the link to this article to me and asked me to consider it, I want to make sure I'm absolutely explicit in my views. After the attention my open letter got, I did write a quick follow up post because there were a couple of things I wanted to make clear. One was that I was not against awareness raising or Coppafeel, just against the use of Page 3 models for awareness raising about breast cancer.
I will say it again now. I am 33 years old, and I have breast cancer. I absolutely, wholeheartedly think awareness raising about the signs and symptoms of breast cancer is incredibly important - of course I do. And I know that Kris and Coppafeel have done a lot of important work to raise awareness of breast cancer signs and symptoms. That's a fantastic thing! My issue has been specifically with the use of Page 3 and topless models to raise awareness of the signs and symptoms of breast cancer. However, while I completely disagree with the approach of the Check 'em Tuesday campaign, I still respect Kris and her motivation, dedication, energy and strength.
Moving on to The Sun's article today "We beat cancer thanks to The Sun"... I still simply don't understand why this whole campaign could not have been done without the use of topless Page 3 models. I've read today's Sun article from top to bottom, and at no point does it mention how sexualised images of women have helped anyone to beat cancer. All of the women's stories featured specify that they became aware that they had cancer as a result of reading about the signs of breast cancer. Some quotes as examples:
So, really, I want to refer back to my original key questions to you, and wonder if you would take the time to write back to me answering them.
What specifically is being gained in terms of raising breast cancer awareness by using topless models?
Is it appropriate to use sexualised images of women (as in Page 3 vs Breast Cancer - Check 'em Tuesday) as part of a campaign to raise breast cancer awareness?
Exactly why won't The Sun try and raise breast cancer awareness without the use of topless models?
I hope to hear back from you soon,
Yours sincerely,
Sarah Perry
Two things caught my attention on Twitter this morning. The first was this tweet from The Sun:
The second was a notification that you yourself, The Sun's Head of PR, had tweeted me:
As a reminder, I just want to quickly go over the background. In August I wrote an Open Letter to The Sun about why their Page 3 Check 'em Tuesday Campaign upset me. A few weeks later I wrote on my blog again, asking you some questions about The Sun's recent call out for young-ish women to pose topless and talk about checking their breasts (Why can't The Sun raise awareness of breast cancer without Page 3 and topless models?). Needless to say, I didn't get a response.
Anyway, the two tweets above from this morning have prompted me to return to this debate here today.
First of all I just want to respond to what Kris Hallenga wrote about in her article in The Telegraph. Thank you for sending me a link. Kris describes how, at the time of the launch of Check 'em Tuesday, she received vicious comments online from women saying they hoped that she won’t recover from breast cancer and will go to an early grave. "One even accused me of “whacking a glamour magazine on the grave of every woman who has died from breast cancer”."
This is one of those situations where I would hope it goes without saying that I think comments like this are indeed vile and completely out of order. There's no place for hateful, vicious, personal attacks in debates about things like breast cancer awareness. But as you have pointedly tweeted the link to this article to me and asked me to consider it, I want to make sure I'm absolutely explicit in my views. After the attention my open letter got, I did write a quick follow up post because there were a couple of things I wanted to make clear. One was that I was not against awareness raising or Coppafeel, just against the use of Page 3 models for awareness raising about breast cancer.
I will say it again now. I am 33 years old, and I have breast cancer. I absolutely, wholeheartedly think awareness raising about the signs and symptoms of breast cancer is incredibly important - of course I do. And I know that Kris and Coppafeel have done a lot of important work to raise awareness of breast cancer signs and symptoms. That's a fantastic thing! My issue has been specifically with the use of Page 3 and topless models to raise awareness of the signs and symptoms of breast cancer. However, while I completely disagree with the approach of the Check 'em Tuesday campaign, I still respect Kris and her motivation, dedication, energy and strength.
Moving on to The Sun's article today "We beat cancer thanks to The Sun"... I still simply don't understand why this whole campaign could not have been done without the use of topless Page 3 models. I've read today's Sun article from top to bottom, and at no point does it mention how sexualised images of women have helped anyone to beat cancer. All of the women's stories featured specify that they became aware that they had cancer as a result of reading about the signs of breast cancer. Some quotes as examples:
- "Sarah was reading The Sun’s Page 3 self-check guide..."
- "...noticed a rash on her left breast – and only knew it was a sign of breast cancer thanks to reading about it in The Sun."
- "Seven weeks after I first read about the signs and breast cancer in The Sun, I was told I had breast cancer"
- "I never checked my breasts — until I read about the importance of it in The Sun."
- "...had I not read about checking my breasts in The Sun, I wouldn’t have even known it was there."
- "wasn’t in the habit of checking her breasts until she read about it in The Sun."
- "...read about signs of breast cancer in The Sun".
So, really, I want to refer back to my original key questions to you, and wonder if you would take the time to write back to me answering them.
What specifically is being gained in terms of raising breast cancer awareness by using topless models?
Is it appropriate to use sexualised images of women (as in Page 3 vs Breast Cancer - Check 'em Tuesday) as part of a campaign to raise breast cancer awareness?
Exactly why won't The Sun try and raise breast cancer awareness without the use of topless models?
I hope to hear back from you soon,
Yours sincerely,
Sarah Perry
Friday, 24 October 2014
If I can beat cancer then I sure as hell can beat the 30 day abs challenge
Earlier this year my friend Amy did the 30 Day Abs Challenge. I told her she was insane. But then somehow I got in to a conversation about it at work, decided to do it myself, and got a lot of colleagues to join in! (Although as far as I know, the Incredible Charlotte was the only one to finish it! BIG CHEER FOR CHARLOTTE!)
It's not easy....
It's not easy....
If I remember right, I got to Day 14. Then I was diagnosed with cancer and forgot all about it. Until now!
I've decided to start again. Surely if I can beat cancer, I can beat the 30 day abs challenge?! In reality it is going to take me more than 30 days to complete because of chemo. But I am absolutely determined to complete it this year.
I was really inspired by the talk I went to on exercise at the Breast Cancer Care Younger Women Together event in Leeds a few weeks ago. Some people give mixed messages about exercise during chemo, before surgery and after surgery, and what you can and can't do. But the exercise and cancer expert there that day reassured me that I can do the exercise I want to do, whenever I can. I left the event with a cold that turned in to a cough, and so I've done no exercise since. But I think I'm ready for it now! I can't wait to get running again too.
Seeing as this blog is a pretty much full disclosure blog, I'm even going to share my photos with you. So here I am, Day 0. No abs, just the excess weight I've put on since I started chemo! (And while I'd like to blame it on the drugs, we'd all know that's a lie.)
Question is, will anyone else join me in the challenge this time? Or is it just the girl on chemo that's hardcore enough for this? ;-)
Update!
I've had a friend sign up already! And I thought in the interests of bigging up those of you that are hard enough to join me, and putting the rest of you to shame, I'd make a list here of my 30 Day Abs Challenge Gang!
Emily J
Dolores C
Helen J
Hannah C
Joanne F
Emma B
Ali B
Dave S
Who else?!
Subscribe to:
Posts (Atom)