Showing posts with label Christmas. Show all posts
Showing posts with label Christmas. Show all posts
Friday, 27 December 2013
Coke Floats & Chemo: Bittersweet Christmas
Coke Floats & Chemo: Bittersweet Christmas: Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on...
Bittersweet Christmas
Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on the table. That wretched dinner! More about that one later.
Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.
This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.
Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.
Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.
So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.
However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.
The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.
The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability. Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.
The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.
If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.
One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.
Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.
Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.
My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.
In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.
I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.
There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.
If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.
In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.
Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.
Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.
It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.
Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.
Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner.
Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.
This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.
Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.
Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.
So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.
However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.
The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.
The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability. Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.
The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.
If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.
One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.
Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.
Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.
My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.
In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.
I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.
There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.
If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.
In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.
Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.
Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.
It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.
Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.
Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner.
Monday, 31 December 2012
Adventures with breast cancer: It will be a Very Happy New Year!
Adventures with breast cancer: It will be a Very Happy New Year!: So it's New Year's Eve, and I really won't be too sorry to see the end of this, a fairly tough year. My heart wants to party tonight, but my...
It will be a Very Happy New Year!
So it's New Year's Eve, and I really won't be too sorry to see the end of this, a fairly tough year. My heart wants to party tonight, but my everything else is screaming "No Thank You". My body just probably isn't strong enough yet. I'm absolutely great when I'm sitting down, but standing up and walking is a bit of an ordeal, with the weakest leg muscles I've ever had and breathlessness like I've just stepped off a porn movie set. I'm fairly certain this is all a legacy of the chemo boot camp I've just completed, and it's not too bad because I do quite enjoy sitting down.
Partying sitting down is a viable option, of course, but you haven't seen the state of the house, thank goodness. All the signs of a happy but very messy family Christmas still lurk everywhere, and to party means to clean and tidy, which I simply don't have the energy for today. So I either only invite very short-sighted friends, or those who will get so drunk so quickly that they won't remember the mess, or for the first time in my life, I have a very quiet New Year.
My kids are all having a good day today. One is off with a lovely family to London Zoo, another has gone bowling then onto lunch with another friend, and my daughter has just got the Christmas present that arrived late - a smartphone with contract, so I doubt I'll see much of her until every last app has been downloaded. I am beyond grateful to kind friends who take my children out to fun places - the way I feel at the moment I'd struggle to even get as far as the car. I actually haven't left the house for nearly a fortnight - 12 days to be precise - but today, using a shopping trolley as a zimmer frame, the fridge and freezer will have to be restocked one way or another.
This New Year neatly coincides with all the new lifestyle and eating resolutions I need to adopt in order to give myself the best fighting chance of seeing next New Year and hopefully, a fair few more. I'm not going to set myself up to fail by making too many changes at once, but today I'd at least like to write the list of the necessary changes, then take on one or two of them every couple of weeks. The biggest New Year's resolution has to be winning this breast cancer battle.
If I didn't have cancer, my New Year's resolution would have to be to finally get around writing a book, or actually several. It's something I've always wanted to do, but never quite got around to it. It would still be lovely to get one written this year, but it's not going to be a resolution, because I really don't need that pressure. Stress and pressure reduction are going to have to be high on the list of cancer-curing resolutions though, which will be hard because I probably secretly thrive on the firefighting.
2012 has been a difficult year, not just with all the horrid bi-lateral breast cancer stuff, but also with stumbling from one non-cancer crisis to the next. No wonder I'm breathless and weak ! It hasn't all been bad though. Friends and family have showered my family with a squillion acts of kindness, love and compassion. I've learnt a heck of a lot about myself and what really is important about life, and my precious relationship with WM has deepened and strengthened - he has just been a total rock at every twist and turn of the precarious last few months.
Writing this blog has also been a really positive part of 2012. When I started it was really just intended as a way to keep the people I care about in the loop with what was going on, but it's become much more than that. I'm humbled that people from all over the world seem to enjoy reading it, and the feedback I get from comments, twitter, facebook and via email is just so warm and lovely. Thank you. The readership, whilst still quite modest, is growing all the time, and if anyone wants to encourage this growth by passing on the link to the blog to others, I'd be thrilled to bits.
2013 already holds some promising excitement. We're turning the blog into a stage play for the Brighton Fringe May - that''s going to be a challenge, but also a load of fun. Then in June, I'll be speaking at an international medical conference about needle-phobia - helping to raise awareness for a very real, but highly embarrassing issue that affects countless thousands of patients everywhere. Neither of these opportunities would have come my way without this blog, which wouldn't have been sustainable without my lovely solid band of supportive readers whether I know you or not.
A photo I really should have included in my previous blog is of our Christmas Tree, at the moment before the children were let loose to open presents. In our house, because of my learning disabled son who is the absolute king of Christmas with his excitement about presents, we have to hide every present until it's time to open them. This year, they simply wouldn't fit under the tree, so this photo shows the first wave of presents - later in the afternoon there were even more to replace them. Yes my children got far more than most years, but you know what, they more than deserved every last one with all they have had to contend with lately.
I'll write again very soon into the New Year, and meanwhile would like to wish you a very Happy New Year with lots of lovely moments all the way through it.
Partying sitting down is a viable option, of course, but you haven't seen the state of the house, thank goodness. All the signs of a happy but very messy family Christmas still lurk everywhere, and to party means to clean and tidy, which I simply don't have the energy for today. So I either only invite very short-sighted friends, or those who will get so drunk so quickly that they won't remember the mess, or for the first time in my life, I have a very quiet New Year.
My kids are all having a good day today. One is off with a lovely family to London Zoo, another has gone bowling then onto lunch with another friend, and my daughter has just got the Christmas present that arrived late - a smartphone with contract, so I doubt I'll see much of her until every last app has been downloaded. I am beyond grateful to kind friends who take my children out to fun places - the way I feel at the moment I'd struggle to even get as far as the car. I actually haven't left the house for nearly a fortnight - 12 days to be precise - but today, using a shopping trolley as a zimmer frame, the fridge and freezer will have to be restocked one way or another.
This New Year neatly coincides with all the new lifestyle and eating resolutions I need to adopt in order to give myself the best fighting chance of seeing next New Year and hopefully, a fair few more. I'm not going to set myself up to fail by making too many changes at once, but today I'd at least like to write the list of the necessary changes, then take on one or two of them every couple of weeks. The biggest New Year's resolution has to be winning this breast cancer battle.
If I didn't have cancer, my New Year's resolution would have to be to finally get around writing a book, or actually several. It's something I've always wanted to do, but never quite got around to it. It would still be lovely to get one written this year, but it's not going to be a resolution, because I really don't need that pressure. Stress and pressure reduction are going to have to be high on the list of cancer-curing resolutions though, which will be hard because I probably secretly thrive on the firefighting.
2012 has been a difficult year, not just with all the horrid bi-lateral breast cancer stuff, but also with stumbling from one non-cancer crisis to the next. No wonder I'm breathless and weak ! It hasn't all been bad though. Friends and family have showered my family with a squillion acts of kindness, love and compassion. I've learnt a heck of a lot about myself and what really is important about life, and my precious relationship with WM has deepened and strengthened - he has just been a total rock at every twist and turn of the precarious last few months.
Writing this blog has also been a really positive part of 2012. When I started it was really just intended as a way to keep the people I care about in the loop with what was going on, but it's become much more than that. I'm humbled that people from all over the world seem to enjoy reading it, and the feedback I get from comments, twitter, facebook and via email is just so warm and lovely. Thank you. The readership, whilst still quite modest, is growing all the time, and if anyone wants to encourage this growth by passing on the link to the blog to others, I'd be thrilled to bits.
2013 already holds some promising excitement. We're turning the blog into a stage play for the Brighton Fringe May - that''s going to be a challenge, but also a load of fun. Then in June, I'll be speaking at an international medical conference about needle-phobia - helping to raise awareness for a very real, but highly embarrassing issue that affects countless thousands of patients everywhere. Neither of these opportunities would have come my way without this blog, which wouldn't have been sustainable without my lovely solid band of supportive readers whether I know you or not.
I'll write again very soon into the New Year, and meanwhile would like to wish you a very Happy New Year with lots of lovely moments all the way through it.
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.
Subscribe to:
Posts (Atom)