Showing posts with label Herceptin. Show all posts
Showing posts with label Herceptin. Show all posts
Monday, 11 November 2013
Coke Floats & Chemo: She's that lady with cancer, you know
Coke Floats & Chemo: She's that lady with cancer, you know: Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my ...
She's that lady with cancer, you know
Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my analysis of some of the problems facing our NHS too. It's been a good week, if a little bit too full-on to catch my breath very often.
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
Monday, 7 October 2013
Coke Floats & Chemo: Acceptance with a Big Heart
Coke Floats & Chemo: Acceptance with a Big Heart: I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shock...
Acceptance with a Big Heart
I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shocks, and loads else. Where do I start? Health news, I suppose. Over the past few weeks I've heard the very best of possible outcomes prognosis-wise, followed moments later by the very worst of outcomes. To be honest I've spent a lot of the past few weeks reeling with shock and trying to get my head around very conflicting information. Yes, I've had moments when I've been lower than ever, then moments when I'm just totally resigned to whatever will happen, then moments of anger at myself about my resigned acceptance, because that just feels like giving up and pointing your toes in the air. Anyhow, it all seems to be OK now, and we're back to that old chestnut with cancer - I might die soon or I might not, but I'm hovering at a comfortable balance at the moment and nothing too dramatic is likely to happen this week or next. They call it stable, whatever that means.
Some cancers are fuelled, either totally or partially, by a growth hormone called HER2, and about a decade ago a really exciting new drug was launched, Herceptin, which blocks this HER2 and so the cancer can't grow. My cancer was partially HER2 receptive, so yippee, I got it, the standard treatment of one year, every three weeks via a drip.
Then I got even better news. Remember the shock when they told me the cancer had spread to my spine and that meant that it was now incurable, and prognosis was very confusing? Well according to the latest PET scan results, something really absurd had happened - that little dot of spine cancer had actually got a tiny bit smaller!! Double yippee! The doctor explained that there seems to be a very small group of women who seem to react remarkably well to Herceptin, and they think that I'm one of this incredibly lucky group. There have been clinical trials offering certain groups of women Herceptin for longer than the year long treatment, and some are doing so well they've been on it for more than 5 years. They tentatively told me that they are considering leaving me on it for at least another year, and possibly just keeping it going until it doesn't seem to be working any more. However. There is always a "but", and in my case it turned out to be an enormous one.
Herceptin blocks HER2 which is great news as far as cancer goes, except your heart also has HER2 receptors, and stopping the HER2
working properly in your heart can cause pretty serious heart damage. I have a heart scan every 3 months to make sure everything is still looking good, and this time it wasn't.
So with barely time to draw breath, never mind cartwheel across the consulting room, the lovely doctor had to explain all that too. Talk about giving you something with the left hand and taking it away with the right. If my heart is damaged, it means absolutely no more Herceptin, which almost certainly means premature death.
It was six whole weeks of wait and wonder before I was booked into a full day of horrid heart tests at a specialist unit. During this time, they decided I could have one dose of Herceptin, and something really odd happened - just as it started I had a funny turn, and doctors got called, and everything got stopped. My blood pressure was through the roof at 190 over 120, and nothing was looking very good at all. So on top of everything else, they have now put me on beta blockers too.
Anyhow, the heart test day was not a good one, lots of needles, lots of horridness, but it was all so worth it in the end. My heart is OK. In fact not just OK, pretty flaming marvellous by the way they were talking. Apparently it's a little bit enlarged which they don't seem to be worried about, but then it's surely much better to have a big heart than a big head. Hope to goodness I don't have both.
There has been a stack of other stuff going on too, stressful stuff, funny stuff, sad stuff, happy stuff, but telling all of it would run to a War and Peace length of prose. The kids are all moving on and growing up, far faster than I ever thought would happen, but this is bringing the odd moment of sheer terror too, and it does seem like we are lurching frotvm crisis to crisis almost on a daily basis. I really wish I was the type of person that loses weight with worry - if there was any fairness in the world I've had enough worry of late to be a perfect size 6.
One of the things that has happened is that my eldest beautiful, clever, talented, witty, kind caring daughter has taken herself to Italy all by herself for a few months. It happened suddenly, one Friday evening, when she bounded downstairs, leapt onto the sofa and told me she had found herself a new job. To start in a few days. On a beach in Sicily, keeping 5 small children safe on their holiday. Francesca hates beaches, the heat and being in the water. Or at least she always has up until then. Off she went, and I was a total amalgam of fear, pride, pleasure and more fear. Oh and I blubbed for England as her plane flew away. Adam was lovely - he took me in his arms and said "Don't worry Mum, she'll be back home again soon". "Not if she falls in love with an Italian, marries him and has his babies" I wailed. He laughed. "Mum, this is Francesca we're talking about. Who on earth would want to marry her?". Little brothers, eh?! But it did make me laugh.
So that's why, last week, WM and I flew off to Rome for 3 days. She has totally fallen in love with Italy, and is now doing an intensive language course just off Piazza Navona. My baby girl, I just had to be with her for her 21st birthday on Wednesday.
Fabulous time, fabulous food, and so brilliant to see her and spend loads of time catching up on all the gossip, news, events and just putting the world to right together. It was also really special to spend proper stop-still-and-stare time with WM, who has just been totally rock-solid in his love and support through every moment, good and bad, since this whole cancer chapter began. We stayed at a Hotel overlooking the Trevi Fountain. The views at breakfast were just beyond amazing. Odd though, because although no one knew I had cancer which was fairly liberating, I just felt so old, and tired, and weak for so much of the time, and the walking was so painfully hard, particularly on the cobblestones, that I felt the cancer was there pointing it's finger and laughing at me the whole time. I was last in Rome only 4 years ago, but I felt 200 years older, and I just couldn't do what was effortless before. It's been a bit of a wake-up call. a realisation that this is how it will always be now. More taking on board, assimilating and accepting, but it will be OK. There was a definite upside, though. For the first time in my life, I wasn't a gibbering wreck as the plane took off. It's this whole acceptance malarkey again, whatever will be will be, and potential plane crashes just don't seem nearly as scary anymore.
Next time I write, I'll post some lovely photos of Rome, but before the family starve to death, I'm now off to create yet another new dinner with an Italian twist - Shepherd's Bolognaise.
Some cancers are fuelled, either totally or partially, by a growth hormone called HER2, and about a decade ago a really exciting new drug was launched, Herceptin, which blocks this HER2 and so the cancer can't grow. My cancer was partially HER2 receptive, so yippee, I got it, the standard treatment of one year, every three weeks via a drip.
Then I got even better news. Remember the shock when they told me the cancer had spread to my spine and that meant that it was now incurable, and prognosis was very confusing? Well according to the latest PET scan results, something really absurd had happened - that little dot of spine cancer had actually got a tiny bit smaller!! Double yippee! The doctor explained that there seems to be a very small group of women who seem to react remarkably well to Herceptin, and they think that I'm one of this incredibly lucky group. There have been clinical trials offering certain groups of women Herceptin for longer than the year long treatment, and some are doing so well they've been on it for more than 5 years. They tentatively told me that they are considering leaving me on it for at least another year, and possibly just keeping it going until it doesn't seem to be working any more. However. There is always a "but", and in my case it turned out to be an enormous one.
Herceptin blocks HER2 which is great news as far as cancer goes, except your heart also has HER2 receptors, and stopping the HER2
working properly in your heart can cause pretty serious heart damage. I have a heart scan every 3 months to make sure everything is still looking good, and this time it wasn't.
So with barely time to draw breath, never mind cartwheel across the consulting room, the lovely doctor had to explain all that too. Talk about giving you something with the left hand and taking it away with the right. If my heart is damaged, it means absolutely no more Herceptin, which almost certainly means premature death.
It was six whole weeks of wait and wonder before I was booked into a full day of horrid heart tests at a specialist unit. During this time, they decided I could have one dose of Herceptin, and something really odd happened - just as it started I had a funny turn, and doctors got called, and everything got stopped. My blood pressure was through the roof at 190 over 120, and nothing was looking very good at all. So on top of everything else, they have now put me on beta blockers too.
Anyhow, the heart test day was not a good one, lots of needles, lots of horridness, but it was all so worth it in the end. My heart is OK. In fact not just OK, pretty flaming marvellous by the way they were talking. Apparently it's a little bit enlarged which they don't seem to be worried about, but then it's surely much better to have a big heart than a big head. Hope to goodness I don't have both.
There has been a stack of other stuff going on too, stressful stuff, funny stuff, sad stuff, happy stuff, but telling all of it would run to a War and Peace length of prose. The kids are all moving on and growing up, far faster than I ever thought would happen, but this is bringing the odd moment of sheer terror too, and it does seem like we are lurching frotvm crisis to crisis almost on a daily basis. I really wish I was the type of person that loses weight with worry - if there was any fairness in the world I've had enough worry of late to be a perfect size 6.
One of the things that has happened is that my eldest beautiful, clever, talented, witty, kind caring daughter has taken herself to Italy all by herself for a few months. It happened suddenly, one Friday evening, when she bounded downstairs, leapt onto the sofa and told me she had found herself a new job. To start in a few days. On a beach in Sicily, keeping 5 small children safe on their holiday. Francesca hates beaches, the heat and being in the water. Or at least she always has up until then. Off she went, and I was a total amalgam of fear, pride, pleasure and more fear. Oh and I blubbed for England as her plane flew away. Adam was lovely - he took me in his arms and said "Don't worry Mum, she'll be back home again soon". "Not if she falls in love with an Italian, marries him and has his babies" I wailed. He laughed. "Mum, this is Francesca we're talking about. Who on earth would want to marry her?". Little brothers, eh?! But it did make me laugh.
So that's why, last week, WM and I flew off to Rome for 3 days. She has totally fallen in love with Italy, and is now doing an intensive language course just off Piazza Navona. My baby girl, I just had to be with her for her 21st birthday on Wednesday.
Fabulous time, fabulous food, and so brilliant to see her and spend loads of time catching up on all the gossip, news, events and just putting the world to right together. It was also really special to spend proper stop-still-and-stare time with WM, who has just been totally rock-solid in his love and support through every moment, good and bad, since this whole cancer chapter began. We stayed at a Hotel overlooking the Trevi Fountain. The views at breakfast were just beyond amazing. Odd though, because although no one knew I had cancer which was fairly liberating, I just felt so old, and tired, and weak for so much of the time, and the walking was so painfully hard, particularly on the cobblestones, that I felt the cancer was there pointing it's finger and laughing at me the whole time. I was last in Rome only 4 years ago, but I felt 200 years older, and I just couldn't do what was effortless before. It's been a bit of a wake-up call. a realisation that this is how it will always be now. More taking on board, assimilating and accepting, but it will be OK. There was a definite upside, though. For the first time in my life, I wasn't a gibbering wreck as the plane took off. It's this whole acceptance malarkey again, whatever will be will be, and potential plane crashes just don't seem nearly as scary anymore.
Next time I write, I'll post some lovely photos of Rome, but before the family starve to death, I'm now off to create yet another new dinner with an Italian twist - Shepherd's Bolognaise.
Sunday, 23 December 2012
Adventures with breast cancer: Happy Christmas!
Adventures with breast cancer: Happy Christmas!: It's Christmas day in two days time. All the presents are wrapped, all the food is in the fridge and freezer, the Christmas tree is up and ...
Happy Christmas!
It's Christmas day in two days time. All the presents are wrapped, all the food is in the fridge and freezer, the Christmas tree is up and decorated - it's only modern technology and the state of the house which is defeating me. Trying to transfer data onto newly-bought mp4 players and a tablet has had my brain working to a frazzle since the small hours of this morning, and still nothing will open and play on the devices. Copying and pasting onto SD cards and onto hard drives in a hundred and one different ways - absolutely nothing works. Why does technology have to be so flipping user unfriendly? I'm doing everything by the book, then writing new books when that doesn't work and doing it all over again, and I might as well just be banging my head against a brick wall. Why can't IT equipment be designed by real people for real people? A task that should have taken an hour or so at the most has so far had me on the verge of a nervous breakdown for over six hours with no end in sight.
These are presents for Toby, my severely learning-disabled teenager. He will open them and expect them to work first time. I'm getting increasingly stressed out about it all - I just want my kids to have the perfect Christmas this year. I've broken the bank buying them loads of things they will hopefully love. They've all had to put up with far too much this year with me being ill, and once cancer looms it's ugly head, you become very aware that there may not be as many future Christmases as you assumed there would be last year. I just want this year to be able to put cancer away in a cupboard and forget it over Christmas, and concentrate on letting them know how precious and loved they all are - and creating memories for their future, whether I'm there to share it with them or not.
Then there is the small matter of the house - it looks like a bombsite at the moment, with a huge amount of clearing up to do before Christmas morning. Somehow it will happen, but right now it seems like a mountain to climb.
Christmas and chemo revenge together really doesn't work well. The past few days have been really tough, with feeling like death and hurting just about everywhere. Each chemo cycle seems to outdo the previous one, with the total exhaustion just gaining more and more speed, til even standing up for a second or two is beyond me.
This chemo that I had on Monday is hopefully my last ever, if it's done it's job properly. Providing the cancer doesn't come back, or they find that it's spread anywhere else, that's it, I'm done and dusted. I wish I had the energy to party and dance about it, but it will take about 6 months before the side effects completely melt away, and I can fire on all cylinders again. Meanwhile, I'm still having Herceptin every three weeks until next Christmas - the procedure is very like chemo, you turn up and get plugged onto a drip in the chemo-room, and wait til it's all dripped into your bloodstream. Hopefully, it won't cause too many side-effects though. Then I start radiotherapy in the middle of January - 4 weeks of daily appointments Monday - Friday (maybe cancer doesn't do anything naughty at the weekends?), and at about the same time I'll start a Tamoxfen equivalent drug to take every day for 5 years, which stops oestrogen-production, and therefore slows down any potential tumour-growth.
I've also got to make some decisions on when I'm having the second mastectomy. Straight after radiotherapy or leave it a year and maybe have reconstruction at the same time? I'm so not sure about reconstruction. Whatever happens in the boob department from now on will be fake, either a little cushion I wear inside a bra, or a major operation with an 18 inch scar across my belly so they can take fat from there, shape it like a boob, and sew a new one on either side. I had a long meeting with a Plastic Surgeon a couple of weeks ago, and learnt far more than I really ever wanted to know about how they do the op. The bit about removing part of the cirulatory system from the tummy and reattaching it to the chest wall to create a more natural blood supply was the stuff that nightmares are made of.
So I may decide simply not to bother. After all, I'm beyond the age where a Porn Star career is a viable option, and will I really want to put myself through a major operation which will lay me low all over again after everything I've been through? I've had breast cancer. On both sides. I have the battle scars to prove it. Do I really need pretend boobs at this stage in my life to pretend that none of this has happened? Probably not. Unfortunately, I have to make some of these decisions in the next few weeks because what I decide will impact on radiotherapy treatments too, and what I don't want to do is make any decisions that will close the door on any future options. Who knows? I might survive another 30 or so years, and decide at aged 80 that I really want a cleavage all over again! Unlikely, but you just never know.
The family crisis that we faced a few weeks ago is slowly resolving itself. We're not completely out of the woods yet, but we are back on the right track, and things are definitely a lot happier here as a result.
A very long story that I can't go into here, but we're getting a dog in the New Year. We are complete dog-novices, and it will undoubtedly add to the stress, mess and workload initially, but the kids are so excited about it that it's definitely the right decision. We went to visit Battersea Dogs Home last week and met several of their dogs, and registered with them. They need to do a home visit, and once we've been approved they will help us choose a nice, easy, steady dog who is already house-trained. Most of my friends and family think I'm completely crazy, but we will make it work. If I've survived everything that's been thrown my way this year, a lovable pet dog is hardly going to defeat us!
The other thing I've started in a very small way is more Laughter Yoga Sessions, this time on Skype, delivering an 8 week one-to-one Laughter YogaTherapy Course, working with a fellow cancer patient. It's working well, but I would really like two or three more people to trial the course with, so please let me know if you might be interested. I'm not charging anything for it, although if you took part and enjoyed it and could afford it, a donation to the Mencap Sensory Room fund would be appreciated.
I'm off now to get even more stressed with SD cards, and to try the Mary Poppins trick of snapping my fingers and seeing if all our rooms tidy themselves. It will probably be after Christmas when I write again, so all the very best wishes for a splendidly lovely Christmas and a New Year that brings everything you could wish for.
Thursday, 8 November 2012
Adventures with breast cancer: A funny old week
Adventures with breast cancer: A funny old week: There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to...
A funny old week
There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to tell it as it is, but without compromising anyone elses privacy by revealing anything without permission, or which might come back and bite us on the bum. That's why I use a lot of pseudonyms - "WM", "Mr Lovely" and "Mary Poppins" for instance - they know who they are, but the rest of the world doesn't necessarily need to.
I am particularly cautious about protecting the privacy of my kids - they each have far more to cope anyway with their special needs and disabilities, and all three of them make me burst with pride as to how well they cope. They certainly don't need their lives laid bare for worldwide consumption.
We have struggled on for 6 months since diagnosis, making it up as we go along, and I suppose it was all going to fall apart at one stage or another, and this week it did, with very serious issues affecting two of them. Each situation would have been traumatic at the best of times, but two of them developing within 24 hours, during the weekend before my chemotherapy Monday, has stretched my coping mechanisms to the limits. These issues are both going to run and run for months and will take a lot of energy, commitment and gentle handling to ensure the long-term well-being of both of them, and I'm still reeling in shock, and trying to get my head around what needs to be done for the best. Just because life throws a life-threatening illness at you doesn't mean it doesn't also enjoy throwing another whole pile of stress your way too, and I am also acutely aware that, at least in part, both these situations have been exacerbated because of my cancer.
It is widely accepted that battling cancer is often the toughest thing people will have to deal with in life. In my case, parenting three disabled children has been much, much tougher. Over the years, though, they have taught me stacks in terms of resilience, optimism, patience (well perhaps that one still needs working on!), resourcefulness and goodness knows what else, which is also probably helping me deal with the cancer nonsense a bit better too. Being a single parent to 3 kids like mine is an excellent crash-course in disaster-management, and I gave up expecting life to be easy a very long time ago.
When I was a very little girl, I went to a convent school, where the nuns used to wax lyrical about how, if God loved you enough, he might be kind enough to give you a vocation, so you could become a nun for the rest of your life, only wear black, never go out, never look at boys and pray a lot. I was six years old, and this concept made me take up praying as a hobby in total earnest. "Please God, I'd be a rubbish nun, and I want an a really interesting, exciting life". Of course, I wanted him to make me Madonna,with untold fame, fortune and privilege, but she must have got in first because she is exactly a year older than me. At least he gave me the interesting and exciting life I asked for, so I suggest you are always very careful what you wish for!
So having chemo on Monday, a new type of chemo that has a reputation for wiping you out completely, on top of the weekend from hell, was a fairly interesting experience. At least I hadn't had the time or energy to worry about it at all, so I just turned up and did it almost on auto-pilot, having had virtually no sleep whatsoever in the previous 48 hours. Actually it isn't a bad way to approach it at all! This new chemo seems to work on the bones, penetrating them to search out any naughty stray cancer cells that want to party there. That means that my white and red blood cells are in for a kicking too, and right now, virtually every bone and joint is aching and hurting. Not too bad yet, but it kept me awake most of the night, and it is also causing something called peripheral neuropathy, which is tingling fingers and toes, so holding things and doing things is hard and going to get harder in the next few days. Who knows, I might enjoy it! An excuse to do very very little at all! They also put me on steroids for 3 days, which makes me really hungry and only naughty sweet stuff will hit the right note, so once again, the cancer-curing diet will just have to wait. (Oh yes, there are definitely advantages to all of this!). The sore mouth and funny taste is also back with a vengeance, but I've discovered a new way of dealing with it - coke floats! Coca cola with a dollop of ice-cream, and two straws, and lots of loud, rude sucking noises when you reach the bottom. I've become something of an addict over the past couple of days, and I'm just loving it! My pipe-dream? That somehow coke floats turn out to be that elusive cancer-cure that no one else has ever thought of! OK, unlikely, but not only can a girl dream, but I think it's roughly OK to do whatever it takes to get through all this as easily as possible.
I had a bit fun last night when two charity canvassers turned up on my doorstep at exactly the same time as I was juggling dinner. Young, eager, fresh-faced but totally prepared to keep me standing in the doorway on a cold November night for ages while our dinner was burning. Big smiles, and "How are you doing tonight?" was their opening gambit. A gift! I stared blankly, pulled off my wig, and said in the thinest, most frail voice I could muster, "I'm really sorry, I've just had chemo, and I really can't do this right now". The expressions of their faces were a total picture! I've never seen anyone retreat backwards down my path falling over themselves with apologies so flipping fast in my life. Achy bones or not, I found the whole thing so funny I had to invent a new "achy bone dance" and performed it for my kid's amusement in the kitchen!
Two real acts of kindness have made this week much much more tolerable. Firstly, I'm off for a heart scan this morning. The next phase of treatment which I'm due to start in a couple of weeks is a new wonder drug called Herceptin. Not all breast cancers respond to it, but I'm very lucky that mine should. Over the past 10 years it has increased survival rates for my type of cancer by well over 30%, so I really want some of it. It means going to have a drip in every 3 weeks for a year, but if that means I survive it's a very small price to pay. However, it can cause severe heart damage, and they need to check my heart is strong enough to cope. The chemo I've already has can also damage the heart, so they really do have to check, and I'll need heart scans every three months for the next year. The normal heart scan involves two cannulas, and they can't use my portacath, so with my needle-phobia I freaked out and really didn't deal with the idea at all well. So my oncologist has arranged for me to go to another hospital where they can do a different test, an Echocardiogram, which doesn't involve any needles. It has just so lightened my load this week. I'm not quite looking forward to lying on the table with my disfigurement naked for them to see, and I'm still really trying to get my head around the whole shark bite scar issue, but it will be OK.
The other lovely thing that happened was a new friend, who lives in Canada and who I have got to know through writing this blog sent me the most amazing greetings card this week. She has taken the time and the trouble to download all the hat photos from the Photo Shoot blog post, and has incorporated them into the most amazing card! Thank you Sharon. Between this post and the next, I'll try and take some photos of it to include, so you can just how lovely it is.
If I'm well enough, off to Drama again tonight, the perfect escape when real life just gets that little bit too much like real life.
I am particularly cautious about protecting the privacy of my kids - they each have far more to cope anyway with their special needs and disabilities, and all three of them make me burst with pride as to how well they cope. They certainly don't need their lives laid bare for worldwide consumption.
We have struggled on for 6 months since diagnosis, making it up as we go along, and I suppose it was all going to fall apart at one stage or another, and this week it did, with very serious issues affecting two of them. Each situation would have been traumatic at the best of times, but two of them developing within 24 hours, during the weekend before my chemotherapy Monday, has stretched my coping mechanisms to the limits. These issues are both going to run and run for months and will take a lot of energy, commitment and gentle handling to ensure the long-term well-being of both of them, and I'm still reeling in shock, and trying to get my head around what needs to be done for the best. Just because life throws a life-threatening illness at you doesn't mean it doesn't also enjoy throwing another whole pile of stress your way too, and I am also acutely aware that, at least in part, both these situations have been exacerbated because of my cancer.
It is widely accepted that battling cancer is often the toughest thing people will have to deal with in life. In my case, parenting three disabled children has been much, much tougher. Over the years, though, they have taught me stacks in terms of resilience, optimism, patience (well perhaps that one still needs working on!), resourcefulness and goodness knows what else, which is also probably helping me deal with the cancer nonsense a bit better too. Being a single parent to 3 kids like mine is an excellent crash-course in disaster-management, and I gave up expecting life to be easy a very long time ago.
When I was a very little girl, I went to a convent school, where the nuns used to wax lyrical about how, if God loved you enough, he might be kind enough to give you a vocation, so you could become a nun for the rest of your life, only wear black, never go out, never look at boys and pray a lot. I was six years old, and this concept made me take up praying as a hobby in total earnest. "Please God, I'd be a rubbish nun, and I want an a really interesting, exciting life". Of course, I wanted him to make me Madonna,with untold fame, fortune and privilege, but she must have got in first because she is exactly a year older than me. At least he gave me the interesting and exciting life I asked for, so I suggest you are always very careful what you wish for!
So having chemo on Monday, a new type of chemo that has a reputation for wiping you out completely, on top of the weekend from hell, was a fairly interesting experience. At least I hadn't had the time or energy to worry about it at all, so I just turned up and did it almost on auto-pilot, having had virtually no sleep whatsoever in the previous 48 hours. Actually it isn't a bad way to approach it at all! This new chemo seems to work on the bones, penetrating them to search out any naughty stray cancer cells that want to party there. That means that my white and red blood cells are in for a kicking too, and right now, virtually every bone and joint is aching and hurting. Not too bad yet, but it kept me awake most of the night, and it is also causing something called peripheral neuropathy, which is tingling fingers and toes, so holding things and doing things is hard and going to get harder in the next few days. Who knows, I might enjoy it! An excuse to do very very little at all! They also put me on steroids for 3 days, which makes me really hungry and only naughty sweet stuff will hit the right note, so once again, the cancer-curing diet will just have to wait. (Oh yes, there are definitely advantages to all of this!). The sore mouth and funny taste is also back with a vengeance, but I've discovered a new way of dealing with it - coke floats! Coca cola with a dollop of ice-cream, and two straws, and lots of loud, rude sucking noises when you reach the bottom. I've become something of an addict over the past couple of days, and I'm just loving it! My pipe-dream? That somehow coke floats turn out to be that elusive cancer-cure that no one else has ever thought of! OK, unlikely, but not only can a girl dream, but I think it's roughly OK to do whatever it takes to get through all this as easily as possible.
I had a bit fun last night when two charity canvassers turned up on my doorstep at exactly the same time as I was juggling dinner. Young, eager, fresh-faced but totally prepared to keep me standing in the doorway on a cold November night for ages while our dinner was burning. Big smiles, and "How are you doing tonight?" was their opening gambit. A gift! I stared blankly, pulled off my wig, and said in the thinest, most frail voice I could muster, "I'm really sorry, I've just had chemo, and I really can't do this right now". The expressions of their faces were a total picture! I've never seen anyone retreat backwards down my path falling over themselves with apologies so flipping fast in my life. Achy bones or not, I found the whole thing so funny I had to invent a new "achy bone dance" and performed it for my kid's amusement in the kitchen!
Two real acts of kindness have made this week much much more tolerable. Firstly, I'm off for a heart scan this morning. The next phase of treatment which I'm due to start in a couple of weeks is a new wonder drug called Herceptin. Not all breast cancers respond to it, but I'm very lucky that mine should. Over the past 10 years it has increased survival rates for my type of cancer by well over 30%, so I really want some of it. It means going to have a drip in every 3 weeks for a year, but if that means I survive it's a very small price to pay. However, it can cause severe heart damage, and they need to check my heart is strong enough to cope. The chemo I've already has can also damage the heart, so they really do have to check, and I'll need heart scans every three months for the next year. The normal heart scan involves two cannulas, and they can't use my portacath, so with my needle-phobia I freaked out and really didn't deal with the idea at all well. So my oncologist has arranged for me to go to another hospital where they can do a different test, an Echocardiogram, which doesn't involve any needles. It has just so lightened my load this week. I'm not quite looking forward to lying on the table with my disfigurement naked for them to see, and I'm still really trying to get my head around the whole shark bite scar issue, but it will be OK.
The other lovely thing that happened was a new friend, who lives in Canada and who I have got to know through writing this blog sent me the most amazing greetings card this week. She has taken the time and the trouble to download all the hat photos from the Photo Shoot blog post, and has incorporated them into the most amazing card! Thank you Sharon. Between this post and the next, I'll try and take some photos of it to include, so you can just how lovely it is.
If I'm well enough, off to Drama again tonight, the perfect escape when real life just gets that little bit too much like real life.
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