I'll try and explain succinctly, but I have been oddly reluctant to post this, but here it is - it's now or never: I'm going to be a stem cell donor.
Not just sign up on the register. Actually do it. I'm a match - for a person - someone in the States as it happens - who needs stem cells. Incredible. I'm a 1 in 33,000 chance for someone. Another human. Incredible that after everything we went through with Blue (who didn't need stem cells, but I can tell you I would have sold my body to the highest bidder to get them should he have done so), that I can do this. Incredible that medicine has advanced so much that this is possible, that I can help someone like this.
Of course it's not at all about me. Sure, I feel elated, emotional and just a little bit proud that it's me, but this is really all about the many people (and their families) struggling with vile, insidious diseases, desperate for a glimmer of hope. After everything that happened with my boy, even though he didn't need a transplant of stem cells, bone marrow or otherwise, I think I am qualified to say that I know a little bit what this person and his or her family are going through. Not perhaps the specifics, but I have been in the situation where you know you would do absolutely anything, give anything, to make the person you love better, and have felt the desperation that comes with being essentially powerless, unable to do anything except rage and pray and hope that it will all come good. So yes, jolly good of me for putting my name forward, and for going ahead, yes, well done. But the reason I'm writing this is because if it means one more person signs up to the British Bone Marrow Registry as a result, that's potentially another family who will have that hope.
And of course, it's also about that one person who I match - who may still not be well enough, in the end, to go through with the transplant. But it's getting closer, and I'm hopeful that the chance can be seized, that the donation and subsequent transplant can go ahead, that there's a future for this person.
I live my life based on the fact that if I worry about something enough, it just won't happen. It doesn't always work in reverse - I've never, ever worried about winning the lottery, and, you guessed it - no jackpot rollover for me (although the fact that I never buy a ticket might have something to do with that). But the Husband has never been killed in a terrible motorway pile up, for example. I have never been raped and murdered in my bed. I have never, EVER been attacked by the monster of unspecified nature that lives in the wardrobe (although I am careful to always close the wardrobe door before I go to bed...)
On the flip side, donating my stem cells? Never gave it a moment's thought. As I've said before, I'm relatively embarrassed that I didn't make more of an effort to give blood before Blue was diagnosed with leukaemia 9 years ago. Once I was able to donate, after Pink was born, I have donated whenever I can. During one of those donations, I must have signed up to the bone marrow registry, but it's never been something I've thought much about. All the publicity makes it clear that they really, REALLY need donors from other ethnic backgrounds to my bog standard White British, and really, it never crossed my mind that I might actually be called upon. But called upon I have been, and given that I have a voice, albeit quiet a small, quiet one, I thought I'd use it to try and spread the word a bit.
So what's happened? Well since the initial "You're a possible match" contact, over the last 8 weeks, I have had a whole series of blood tests from the initial tests that confirmed I was the best match for this patient, through to tests and a medical to making sure I am fit and healthy enough to donate (I am - whoop! - I was even described as YOUNG and healthy. How good was that?!), and more blood tests - a whole 15 vials which made the nurse at the doctors' surgery here in Cardigan blanch slightly first thing on a Monday morning a couple of weeks ago, to be sent off in 3 different courier kits...
And now I am waiting. The final arrangements in place, and assuming the patient has started his or her 'conditioning therapy' to prepare to receive the stem cells, I will be visited by a nurse starting on Thursday for a series of daily injections to persuade my stem cells to poke their little powerhouses from above the parapet of my hip bone and start circulating round my blood stream. Then on Sunday I head to Bristol for an 8.15 am appointment on Monday morning where I will be hooked up to a machine for the donation process. My blood will be taken from my left arm, fed into a machine which separates off the stem cells and then returned to my right arm. I've been told it will take around 4-5 hours - so I've got my kindle loaded up... And my stem cells, well they'll be loaded up and packed off with a courier on a plane to somewhere in the USA. That's all I know - and all I will know for a couple of years at least. But I'm really hopeful that in a couple of years time, I'll find out that it worked. That someone got to live because I'd signed up to the Bone Marrow Register.
I've been brilliantly supported by the lovely ladies and the Bone Marrow Registry in Bristol - who have answered all my questions, sorted me out train tickets and made sure everything runs smoothly. if you're worried about how this might impact on your financially, the procedure is fully expensed, even including expenses for a partner who has to accompany you, and - in my case, when I went for my medical, a day of 'dogsitting' for Fred the dog.
So what more can I say? Don't leave a comment saying 'wow how brilliant', or 'good for you' - leave a comment telling me you've signed up - and I know not everyone can donate blood, but if you can, please do. Please make room in your life once every 3 months to donate a pint; and sign up to the bone marrow registry. You may never be called. But you just might. You just might be able to save someone else's life, to give another family some hope - and all for just a little inconvenience in your own life.
You can find out more about the British Bone Marrow Registry here. If you register you become part of an international community of possible donors - my stem cells will be going to the States, which is unusual but as there was presumably no one on the US registers, the search was widened internationally, which is reassuring because if you or one of your family needed a transplant, there's a potentially wide pool available.
So go on - if you can - and do it. Sign up and tell me you've done it. Make the pool even bigger. You never know who might need it.
Family food, cake & the odd showstopper all washed down with the chaos of daily life, & a large G&T
Showing posts with label Leukaemia. Show all posts
Showing posts with label Leukaemia. Show all posts
Tuesday, 7 July 2015
Wednesday, 11 February 2015
Reflections on Valentines and moving on
So it's Valentines Day on Saturday.
As ever, there are lots of tempting food tales knocking around to help you show appreciation for your loved one. And yet again, I've failed to pre-empt this and have some suitable treats to share with you here, but the thing is, I'm not very good at making a special thing out of Valentines Day these days.
You see, this is a bittersweet time of year for me. Circumstances first conspired just over 16 years ago with the outcome that our wedding anniversary takes place on 13th February (and not on 29th May as originally planned...) - cue several years of being asked if we'd got the date wrong as we booked and then sat in empty restaurants, NOT enjoying the 'specially chosen Valentines menu' because we were 'a day early'. And then, as this year, the raised eyebrow from those suspicious types that think we must be mad to have got married on the 13th and have to endure a Friday 13th wedding anniversary every so often (to that I say "13 is a lucky number in Italy". Check it out.) By the time you've got over all that and enjoyed the anniversary, well, we've mostly said it all on our anniversary.
And then, in 2006, Blue was diagnosed with leukaemia - on 13th February. Our wedding anniversary. This is absolutely not a 'poor me, poor us' post, although I guess it is quite self-indulgent. But it was a dark day if ever there was one. And although that is all over now, I still can't resist giving it a prod every now and again, just to see if it still hurts as much. Thankfully, it doesn't - each time I go there, and I go there less and less - the part of my soul that screams whenever I edge towards it is a little harder to find, the nightmare is a little less easy to wake.
My memories of that period are slowly distilling themselves into a series of snapshots. Not quite sepia tones yet, but fading year by year as Blue shows himself to be strong and healthy, robust and nothing like the chemo-ravaged toddler I cradled for so many months, willing him to survive and hoping that the Husband & my relationship would too...
One of those snapshots is of a table for 2, carefully laid with a clean tablecloth, the wedding present cutlery, candles ready to be lit, a fire laid in the grate. I was going to cook a special meal for the Husband that night in 2006. It was a Monday night. It was going to be Nigella's sake steak and something chocolatey. But I left the house that afternoon to take Blue for a hospital appointment and didn't go home for 2 weeks.
Somehow I've never felt like cooking for either our anniversary or Valentines since, but just as Blue has recovered so have better memories begun to replace the bleak ones, and I've become more willing to celebrate our anniversary with something more than a battening down of the hatches and a thankfulness that we're all still here and alive another year on. So this year, the Husband and I are heading out. I'm very excited. The babysitter is booked and we're heading off to Lampeter Town Hall where Tom Holden will be hosting one of his supper clubs.
Enjoy cooking for your loved ones - while you're slaving over a hot stove, I'll be enjoying something quite delicious!
As ever, there are lots of tempting food tales knocking around to help you show appreciation for your loved one. And yet again, I've failed to pre-empt this and have some suitable treats to share with you here, but the thing is, I'm not very good at making a special thing out of Valentines Day these days.
You see, this is a bittersweet time of year for me. Circumstances first conspired just over 16 years ago with the outcome that our wedding anniversary takes place on 13th February (and not on 29th May as originally planned...) - cue several years of being asked if we'd got the date wrong as we booked and then sat in empty restaurants, NOT enjoying the 'specially chosen Valentines menu' because we were 'a day early'. And then, as this year, the raised eyebrow from those suspicious types that think we must be mad to have got married on the 13th and have to endure a Friday 13th wedding anniversary every so often (to that I say "13 is a lucky number in Italy". Check it out.) By the time you've got over all that and enjoyed the anniversary, well, we've mostly said it all on our anniversary.
And then, in 2006, Blue was diagnosed with leukaemia - on 13th February. Our wedding anniversary. This is absolutely not a 'poor me, poor us' post, although I guess it is quite self-indulgent. But it was a dark day if ever there was one. And although that is all over now, I still can't resist giving it a prod every now and again, just to see if it still hurts as much. Thankfully, it doesn't - each time I go there, and I go there less and less - the part of my soul that screams whenever I edge towards it is a little harder to find, the nightmare is a little less easy to wake.
My memories of that period are slowly distilling themselves into a series of snapshots. Not quite sepia tones yet, but fading year by year as Blue shows himself to be strong and healthy, robust and nothing like the chemo-ravaged toddler I cradled for so many months, willing him to survive and hoping that the Husband & my relationship would too...
One of those snapshots is of a table for 2, carefully laid with a clean tablecloth, the wedding present cutlery, candles ready to be lit, a fire laid in the grate. I was going to cook a special meal for the Husband that night in 2006. It was a Monday night. It was going to be Nigella's sake steak and something chocolatey. But I left the house that afternoon to take Blue for a hospital appointment and didn't go home for 2 weeks.
Somehow I've never felt like cooking for either our anniversary or Valentines since, but just as Blue has recovered so have better memories begun to replace the bleak ones, and I've become more willing to celebrate our anniversary with something more than a battening down of the hatches and a thankfulness that we're all still here and alive another year on. So this year, the Husband and I are heading out. I'm very excited. The babysitter is booked and we're heading off to Lampeter Town Hall where Tom Holden will be hosting one of his supper clubs.
Enjoy cooking for your loved ones - while you're slaving over a hot stove, I'll be enjoying something quite delicious!
Sunday, 8 June 2014
Banoffee Pie
The other day I had a proper conversation on the phone with my Dad. That butt of many a telecoms company advert, the stilted "Is Mum there?" interaction that I must confess to being an all too common feature of my relationship with my father (Note to self: must try harder!).
We talked about quite a lot of things, and tangentially, my mum's current list of worries. Mum is always worrying about something, and I have many conflicting feelings about this. In my less-generous moments, I think "Well what does she have to worry about?" (sorry Mum!). Her 3 kids have all left home, we're relatively well settled, they gave us the best they could in terms of education, and for goodness sake, we're grown ups. But then, she's still working, there's my Dad (sorry Dad!), and while we may have all left home and have families of our own, well, I am sure that we, her children, and now her 5 grandchildren, give her plenty to worry about - not to mention our various dogs which she views almost the same as her grandchildren (that's good for the dogs btw, rather than bad for the grandchildren) vicariously if nothing else. She also has plenty of other things to worry about - always has done - but hasn't really let on to me. I mean, why would you burden your kids? There are lots of things she worries about, has worried about through the years that I have had no idea about whatsoever...
Me on the other hand? I have LOADS to worry about.
It's one of those things people tell you about being a parent - is it just about mothers? I can't remember - that you don't actually believe until it happens. The worry. Along with the guilt.
Guilt and worry - I mean it's not a great combination, is it? Doesn't really sell 'motherhood' (or parenthood) does it?
I like to think I've got the guilt thing mostly under control, although it does rear its ugly head every so often - those times when I abandon Blue & Pink to the TV so that I can work, those times when I effect excessive tiredness and drink a glass of wine instead of reading bed time stories...
But the worry? No, it's not under control at all. There are the silly niggly worries - the too much TV worries (see 'Guilt' above), the not eating enough fruit/eating too many sweets worries, the are they getting enough exercise, enough rest, are they doing too many activities/not enough activities after school, the which secondary school worries (and yes, I know #firstworldproblems all of them). Then there are the bigger, more serious worries - how our own, adult, actions, big or small will impact on them, both us personally (decamping to West Wales slots in nicely here), and humanity generally (UKIP, global warming, war, famine, pestilence - I rest my case)
I'm beginning to actually realise this state of perpetual worry - the one I mock my mum for, is something that I too have unwittingly succumbed to, and am now in a constant sweat about something - actually a number of things - a good combination of worries, each registering different scores on the worry scale. I find myself saying "be careful" to the children ALL THE TIME, even though I want them to go out there and be adventurous, even though I collude with the Husband to put them into positions where they will need to take risks. There's always another thing to fret over, even if it's only in the abstract...
It goes beyond an 'absolute' state of worry, too. The resolution of one worry doesn't lift the burden, lessen it - it just leaves a void for another worry to slip in to. For those of you who have read this blog relatively frequently over the last few years, you'll know that my son, my Blue, had leukaemia when he was younger. Diagnosed at 2, we spent a year pretty much living in and out of hospital, followed with another 2 years of monthly chemo. Pink was born 3 months in, it was a tough time. A lot of good came out of it, but it was gruelling and terrible too (though eased by the amazing and awesome NHS team of doctors and nurses who looked after us all, and our wonderful family and friends who supported us through it)and frankly, not a time I'd like to return to.
Since the end of his chemo in June 2009, we have had check ups - initially every month, gradually spacing out to every 6 months. We've had a couple of wobbles, and on one occasion I did take him in to hospital to get his blood counts checked, but he has stayed healthy. That hasn't meant that every bruise, every nose bleed, every cold that hasn't shifted quickly enough hasn't cause my heart to stop, but slowly, this particular worry - the initial worry/panic that he would actually die when he was first diagnosed - shifted from being an ever present heart-gripping worry screaming in my ear, to one of the low level on going worries of life.
And now its gone.
This week, we hit the magic 5 years from the end of chemo. No relapses. Although his consultant tells us there are documented cases of childhood leukaemia returning after this point, they are incredibly rare, so Blue has had the 'all clear'. Emotional doesn't even begin to describe it.
We left Piam Brown Ward, Southampton General Hospital at 4.30 on Thursday with a 5 hour drive home ahead of us, and I just wanted to sit and cry. We'd seen some of the nurses who had cared for us in the early days, Blue had even indulged in a cinammon swirl (despite his malfunctioning teeth) - the same cinammon swirls we used to tempt him out of his regular 'magic sleeps' when he had to have chemo injected into his spinal fluid every 3 months. To say it all felt bitter sweet is an understatement. As we headed up the A34, before turning West, we saw the Red Arrows flying in formation, presumably off to do D Day, and I exclaimed excitedly (perhaps misguidledly) "They are for you! To celebrate! Your 'All clear!".
Blue sat there for a bit in the car pondering this (I have to say I'd probably been behaving a little strangely all day), then announced "I am quite excited Mummy. I found some diamond on Minecraft"
No. Idea. Whatsoever.
I'm not even sure he ever registered that I have been worrying about it. But then, I spent most of the time while he was ill being positive, upbeat, trying to hold it together so he wasn't scared. Explaining calmly what would happen - that yes it would hurt but he could have a cinammon swirl at the end of it... I mean why would you burden your kids with that sort of worry? It was exhausting, but if it helped him deal with what he was going through, it was worth it. Is it a natural urge or instinct I wonder? Part of giving your kids optimism about the future, a feeling that life is there for the taking, that we protect them from our own concerns and worries?
And so now that's all over, what do I have to worry about? I feel quite at sea. I MUST have something to worry about. Well, Blue did kindly knock his teeth out during half term, so there is something to worry about with that. And on Saturday, I spent a not inconsiderable amount of time fretting about whether the banana in a banoffee pie went under or on top of the caramel layer - and what exactly to top it off with.
The kids have been going on and ON at me, since before I made the banoffee cake the other week to make this. I couldn't remember if I'd made it before - and it turns out that I produced it for a BBQ in 2012 (what would I do without this blog to remind me what we were eating 2 years ago??). After this week's news, it seemed an appropriate moment for indulgence.
I don't know why I was worried about where the flippin' banana slices should go or what to crumble over the top, but there you go. And in the end, I came down on the side of caution - with banana under and on top of the caramel, and chopped up curly wurly on top.
Trivial, may be, but, you know, I'll take trivial for now.
Banoffee Pie
250g digestive biscuits
200g unsalted butter
100g soft light brown sugar
397g tin condensed milk
2 large bananas
300ml double cream
1.5 curly wurly bars, fridge cold (you can eat the remaining 0.5)
20cm loose bottomed cake tin, greased
Gently melt the butter in a medium sized pan (or in the microwave in a reasonabe sized bowl).
While the butter is melting, crush up the digestive biscuits - I whizzed them in a food processor - then stir them in to the melted butter.
Tip into the cake tin and spread out to cover the base and up the sides a little to make a 'case'. Pop this in the fridge for 10 minutes or so to firm up.
While you are doing this, slice up one of the bananas. Once the case has set, arrange the sliced banana over the biscuit base and set aside while you make the caramel.
In a heavy based saucepan, gently melt together the butter and sugar over a low heat stirring all the time to prevent burning.
Tip in the condensed milk, turn up the heat and bring to a boil, stirring all the time. Boil for around a minute till you have a golden, thickened caramel. Do resist the temptation to stick you finger in for a taste.
Pour this over the banana layer, then back in the fridge for at least an hour to cool and set.
When you're ready to serve, remove the pie from the fridge and unmould the pie (It ill still be on the tin base, but it will be much easier to slice if you have got rid of the sides.
Slice up the second banana and layer that over the caramel, then softly whip the cream and spread this, over the top of the banana. Cut up your curly wurly bars into varying sized chunks and scatter artfully over the top of the cream.
We talked about quite a lot of things, and tangentially, my mum's current list of worries. Mum is always worrying about something, and I have many conflicting feelings about this. In my less-generous moments, I think "Well what does she have to worry about?" (sorry Mum!). Her 3 kids have all left home, we're relatively well settled, they gave us the best they could in terms of education, and for goodness sake, we're grown ups. But then, she's still working, there's my Dad (sorry Dad!), and while we may have all left home and have families of our own, well, I am sure that we, her children, and now her 5 grandchildren, give her plenty to worry about - not to mention our various dogs which she views almost the same as her grandchildren (that's good for the dogs btw, rather than bad for the grandchildren) vicariously if nothing else. She also has plenty of other things to worry about - always has done - but hasn't really let on to me. I mean, why would you burden your kids? There are lots of things she worries about, has worried about through the years that I have had no idea about whatsoever...
Me on the other hand? I have LOADS to worry about.
It's one of those things people tell you about being a parent - is it just about mothers? I can't remember - that you don't actually believe until it happens. The worry. Along with the guilt.
Guilt and worry - I mean it's not a great combination, is it? Doesn't really sell 'motherhood' (or parenthood) does it?
I like to think I've got the guilt thing mostly under control, although it does rear its ugly head every so often - those times when I abandon Blue & Pink to the TV so that I can work, those times when I effect excessive tiredness and drink a glass of wine instead of reading bed time stories...
But the worry? No, it's not under control at all. There are the silly niggly worries - the too much TV worries (see 'Guilt' above), the not eating enough fruit/eating too many sweets worries, the are they getting enough exercise, enough rest, are they doing too many activities/not enough activities after school, the which secondary school worries (and yes, I know #firstworldproblems all of them). Then there are the bigger, more serious worries - how our own, adult, actions, big or small will impact on them, both us personally (decamping to West Wales slots in nicely here), and humanity generally (UKIP, global warming, war, famine, pestilence - I rest my case)
I'm beginning to actually realise this state of perpetual worry - the one I mock my mum for, is something that I too have unwittingly succumbed to, and am now in a constant sweat about something - actually a number of things - a good combination of worries, each registering different scores on the worry scale. I find myself saying "be careful" to the children ALL THE TIME, even though I want them to go out there and be adventurous, even though I collude with the Husband to put them into positions where they will need to take risks. There's always another thing to fret over, even if it's only in the abstract...
It goes beyond an 'absolute' state of worry, too. The resolution of one worry doesn't lift the burden, lessen it - it just leaves a void for another worry to slip in to. For those of you who have read this blog relatively frequently over the last few years, you'll know that my son, my Blue, had leukaemia when he was younger. Diagnosed at 2, we spent a year pretty much living in and out of hospital, followed with another 2 years of monthly chemo. Pink was born 3 months in, it was a tough time. A lot of good came out of it, but it was gruelling and terrible too (though eased by the amazing and awesome NHS team of doctors and nurses who looked after us all, and our wonderful family and friends who supported us through it)and frankly, not a time I'd like to return to.
Since the end of his chemo in June 2009, we have had check ups - initially every month, gradually spacing out to every 6 months. We've had a couple of wobbles, and on one occasion I did take him in to hospital to get his blood counts checked, but he has stayed healthy. That hasn't meant that every bruise, every nose bleed, every cold that hasn't shifted quickly enough hasn't cause my heart to stop, but slowly, this particular worry - the initial worry/panic that he would actually die when he was first diagnosed - shifted from being an ever present heart-gripping worry screaming in my ear, to one of the low level on going worries of life.
And now its gone.
This week, we hit the magic 5 years from the end of chemo. No relapses. Although his consultant tells us there are documented cases of childhood leukaemia returning after this point, they are incredibly rare, so Blue has had the 'all clear'. Emotional doesn't even begin to describe it.
Blue sat there for a bit in the car pondering this (I have to say I'd probably been behaving a little strangely all day), then announced "I am quite excited Mummy. I found some diamond on Minecraft"
No. Idea. Whatsoever.
I'm not even sure he ever registered that I have been worrying about it. But then, I spent most of the time while he was ill being positive, upbeat, trying to hold it together so he wasn't scared. Explaining calmly what would happen - that yes it would hurt but he could have a cinammon swirl at the end of it... I mean why would you burden your kids with that sort of worry? It was exhausting, but if it helped him deal with what he was going through, it was worth it. Is it a natural urge or instinct I wonder? Part of giving your kids optimism about the future, a feeling that life is there for the taking, that we protect them from our own concerns and worries?
And so now that's all over, what do I have to worry about? I feel quite at sea. I MUST have something to worry about. Well, Blue did kindly knock his teeth out during half term, so there is something to worry about with that. And on Saturday, I spent a not inconsiderable amount of time fretting about whether the banana in a banoffee pie went under or on top of the caramel layer - and what exactly to top it off with.
The kids have been going on and ON at me, since before I made the banoffee cake the other week to make this. I couldn't remember if I'd made it before - and it turns out that I produced it for a BBQ in 2012 (what would I do without this blog to remind me what we were eating 2 years ago??). After this week's news, it seemed an appropriate moment for indulgence.
I don't know why I was worried about where the flippin' banana slices should go or what to crumble over the top, but there you go. And in the end, I came down on the side of caution - with banana under and on top of the caramel, and chopped up curly wurly on top.
Trivial, may be, but, you know, I'll take trivial for now.
Banoffee Pie
250g digestive biscuits
200g unsalted butter
100g soft light brown sugar
397g tin condensed milk
2 large bananas
300ml double cream
1.5 curly wurly bars, fridge cold (you can eat the remaining 0.5)
20cm loose bottomed cake tin, greased
Gently melt the butter in a medium sized pan (or in the microwave in a reasonabe sized bowl).
While the butter is melting, crush up the digestive biscuits - I whizzed them in a food processor - then stir them in to the melted butter.
Tip into the cake tin and spread out to cover the base and up the sides a little to make a 'case'. Pop this in the fridge for 10 minutes or so to firm up.
While you are doing this, slice up one of the bananas. Once the case has set, arrange the sliced banana over the biscuit base and set aside while you make the caramel.
In a heavy based saucepan, gently melt together the butter and sugar over a low heat stirring all the time to prevent burning.
Tip in the condensed milk, turn up the heat and bring to a boil, stirring all the time. Boil for around a minute till you have a golden, thickened caramel. Do resist the temptation to stick you finger in for a taste.
Pour this over the banana layer, then back in the fridge for at least an hour to cool and set.
When you're ready to serve, remove the pie from the fridge and unmould the pie (It ill still be on the tin base, but it will be much easier to slice if you have got rid of the sides.
Slice up the second banana and layer that over the caramel, then softly whip the cream and spread this, over the top of the banana. Cut up your curly wurly bars into varying sized chunks and scatter artfully over the top of the cream.
Friday, 28 March 2014
Rhubarb Upside Down Cake
When I read other people's food blogs and see what they are coping with in terms of food allergies and intolerances, I have to say that I thank my lucky stars and reach for the peanut butter. To have to think every time you go into the kitchen - or to the shops - about whether something is going to harm someone you love - it must be difficult. I know that people adapt, and often demonstrate a flair for invention in their cookery that those of us not challenged in the same way can lack. I admire that - so what if I/he/she can't eat eggs/milk/nuts/tomatoes - I will make sure I/he/she eats something even more delicious - and I'd like to think that I'd be one of those people, but it must be hard - especially that underlying fear that get it wrong, have a lapse in concentration, and it could all go very badly wrong very
quickly.
The only allergy I am aware of in the RJ flock is one that Blue revealed when he was being treated for leukaemia. One of the more stressful administrations was of a drug that had to be injected directly into his muscle rather than via the Hickman line that he had fitted (to avoid the need for canulas and the like everytime he needed a blood test, a transfusion, or drugs). The drug concerned was a known allergen and as a result every one who received it was required to remain on the hospital ward for an hour after it had been injected.
The second time he received the injection (with a lot of tears and indignation), we waited our allotted hour and made our way downstairs (the children's oncology ward, the wonderful Piam Brown Ward is on the 8th floor of Southampton General Hospital). We'd been in hospital for a long time, and I was desperate to get home, some 45 minutes away up the M3. Blue was fussing a bit in his pushchair, but I assumed he was just tired and feeling ratty from the cocktail of drugs he'd received over the course of the preceding few hours. He started to ask for a drink. My instinct was to just get in the car and drive, but something stopped me, and I went and bought a bottle of water at a vastly inflated price.
I crouched down to give him the bottle with a certain amount of bad grace. Don't judge me - it was exhausting the whole caring for a sick child thing, and while I would do it again in a flash should either one of them become ill again (although that's not an invitation), I spent a lot of time feeling irritable, emotional, and grouchy, especially when we'd spent a day in hospital. And do bear in mind that I was 8 months' pregnant at this stage.
So I was crouching down and helping him with the bottle - he was only 2 and a bit - when I noticed the tiniest, wierd red mark in the corner of his mouth. This time my instincts took over - while me head kept telling me to just get to the car and get home, my heart said "Just go and get it checked - you're in hospital anyway".
I headed back to the lift, getting quicker as Blue became more and more restless. Waited for the lift, back up the 8 floors, hurtled down the corrider, pressed the buzzer to be let into the ward. As I flung the double doors opened and burst into the reception area, Blue did a spectacular projectile vomit and came out in the most massive rash. It was terrifying. And just thank God that I hadn't got in the car and driven off...
Fortunately, the nurses came rushing, drugs were administered and 2 days later we went home. The immediate upshot was that the required waiting time after the injection changed from an hour to an hour and 15 minutes, so sorry about that if it affects you, and for Blue, instead of having one injection of that particular drug every time he needed it, he had to have 6 injections (every other day over 2 weeks) of a variant of the same drug which he didn't react to. My how we laughed...
So I do understand about allergies and how terrifying an allergic reaction can be.
My children's previous school banned nuts entirely. There were children with allergies, and when I challenged, I was advised that there were cases of children going into anaphalactic shock as a result of a parent coming in and kissing them having consumed some peanuts in the pub earlier. Now I don't want anyone to die or have the same kind of terrifying experience that we went through, but I cook a lot with nuts - especially cake, and the ban meant that the kids were unable to take these treats in to school in their packed lunches. And if they don't take things to school they sit in the cupboard or fridge calling to me...
So the new school. The first couple of weeks they had school dinners. A revelation - proper portions, and leftovers distributed to those who wanted. I kid you not, my gannets have been able to have thirds on occasion... But wanting to balance things out, we've moved back to having some packed lunches as before, and so the issue of nuts arose. I couldn't find any information on the school website or in any of the paperwork I'd received so I made enquiries and was told that nuts were allowed - there was a child with allergies, but as long as food wasn't shared, well that was OK.
Now, I don't know if there was a reason why the previous school couldn't take this approach - and I don't want to downplay the seriousness of nut allergies - I know they can be very serious indeed - and it's probably because I had a few other issues with their old school - but it felt like the voice of common sense washing over me. It also meant that they've been able to take slices of this lush cake to school with them this week.
I'm not shy in my adoration of the pink sticks that are rhubarb, and as we had left a prolific patch behind, I was very excited to see a patch in the garden of the house we are renting. Rhubarb and almond is one of my favourite combinations, and this cake just hit the spot last weekend.
Rhubarb Upside Down Cake
40g light muscovado sugar
40g butter
grated zest of a clementine
350g rhubarb, trimmed and cut into 5 cm slices
85g unsalted butter
120g caster sugar
2 large eggs
70g plain flour
2/3 tsp baking powder
50g ground almonds
pinch salt
splash of milk
toasted flaked almonds
You'll also need a 20 cm frying pan which can go in the oven.
Pre heat the oven to to 180C.
Put the sugar and butter in the pan and melt together.
Sprinkle over the grated zest, remove the pan from the heat and arrange the rhubarb pieces over the top.
Cream together the butter and caster sugar.
Add the eggs one at a time, still beating. Sift in the flour and baking powder, and then add in the ground almonds, and fold in to the mixture.
Add in the milk - just a splash - then spread the batter over the rhubarb and pop in the oven.
Bake for about 30 mins till the mixture is firm to the touch.
Leave to cool for 20 minutes or so in the pan, then loosen round the edges and turn the cake out onto a plate so that the rhubarb is upper most.
Sprinkle over the toasted almonds and serve.
quickly.
The only allergy I am aware of in the RJ flock is one that Blue revealed when he was being treated for leukaemia. One of the more stressful administrations was of a drug that had to be injected directly into his muscle rather than via the Hickman line that he had fitted (to avoid the need for canulas and the like everytime he needed a blood test, a transfusion, or drugs). The drug concerned was a known allergen and as a result every one who received it was required to remain on the hospital ward for an hour after it had been injected.
The second time he received the injection (with a lot of tears and indignation), we waited our allotted hour and made our way downstairs (the children's oncology ward, the wonderful Piam Brown Ward is on the 8th floor of Southampton General Hospital). We'd been in hospital for a long time, and I was desperate to get home, some 45 minutes away up the M3. Blue was fussing a bit in his pushchair, but I assumed he was just tired and feeling ratty from the cocktail of drugs he'd received over the course of the preceding few hours. He started to ask for a drink. My instinct was to just get in the car and drive, but something stopped me, and I went and bought a bottle of water at a vastly inflated price.
I crouched down to give him the bottle with a certain amount of bad grace. Don't judge me - it was exhausting the whole caring for a sick child thing, and while I would do it again in a flash should either one of them become ill again (although that's not an invitation), I spent a lot of time feeling irritable, emotional, and grouchy, especially when we'd spent a day in hospital. And do bear in mind that I was 8 months' pregnant at this stage.
So I was crouching down and helping him with the bottle - he was only 2 and a bit - when I noticed the tiniest, wierd red mark in the corner of his mouth. This time my instincts took over - while me head kept telling me to just get to the car and get home, my heart said "Just go and get it checked - you're in hospital anyway".
I headed back to the lift, getting quicker as Blue became more and more restless. Waited for the lift, back up the 8 floors, hurtled down the corrider, pressed the buzzer to be let into the ward. As I flung the double doors opened and burst into the reception area, Blue did a spectacular projectile vomit and came out in the most massive rash. It was terrifying. And just thank God that I hadn't got in the car and driven off...
Fortunately, the nurses came rushing, drugs were administered and 2 days later we went home. The immediate upshot was that the required waiting time after the injection changed from an hour to an hour and 15 minutes, so sorry about that if it affects you, and for Blue, instead of having one injection of that particular drug every time he needed it, he had to have 6 injections (every other day over 2 weeks) of a variant of the same drug which he didn't react to. My how we laughed...
So I do understand about allergies and how terrifying an allergic reaction can be.
My children's previous school banned nuts entirely. There were children with allergies, and when I challenged, I was advised that there were cases of children going into anaphalactic shock as a result of a parent coming in and kissing them having consumed some peanuts in the pub earlier. Now I don't want anyone to die or have the same kind of terrifying experience that we went through, but I cook a lot with nuts - especially cake, and the ban meant that the kids were unable to take these treats in to school in their packed lunches. And if they don't take things to school they sit in the cupboard or fridge calling to me...
So the new school. The first couple of weeks they had school dinners. A revelation - proper portions, and leftovers distributed to those who wanted. I kid you not, my gannets have been able to have thirds on occasion... But wanting to balance things out, we've moved back to having some packed lunches as before, and so the issue of nuts arose. I couldn't find any information on the school website or in any of the paperwork I'd received so I made enquiries and was told that nuts were allowed - there was a child with allergies, but as long as food wasn't shared, well that was OK.
Now, I don't know if there was a reason why the previous school couldn't take this approach - and I don't want to downplay the seriousness of nut allergies - I know they can be very serious indeed - and it's probably because I had a few other issues with their old school - but it felt like the voice of common sense washing over me. It also meant that they've been able to take slices of this lush cake to school with them this week.
I'm not shy in my adoration of the pink sticks that are rhubarb, and as we had left a prolific patch behind, I was very excited to see a patch in the garden of the house we are renting. Rhubarb and almond is one of my favourite combinations, and this cake just hit the spot last weekend.
Rhubarb Upside Down Cake
40g light muscovado sugar40g butter
grated zest of a clementine
350g rhubarb, trimmed and cut into 5 cm slices
85g unsalted butter
120g caster sugar
2 large eggs
70g plain flour
2/3 tsp baking powder
50g ground almonds
pinch salt
splash of milk
toasted flaked almonds
You'll also need a 20 cm frying pan which can go in the oven.
Pre heat the oven to to 180C.
Put the sugar and butter in the pan and melt together.
Sprinkle over the grated zest, remove the pan from the heat and arrange the rhubarb pieces over the top.
Cream together the butter and caster sugar.
Add the eggs one at a time, still beating. Sift in the flour and baking powder, and then add in the ground almonds, and fold in to the mixture.
Add in the milk - just a splash - then spread the batter over the rhubarb and pop in the oven.
Bake for about 30 mins till the mixture is firm to the touch.
Leave to cool for 20 minutes or so in the pan, then loosen round the edges and turn the cake out onto a plate so that the rhubarb is upper most.
Sprinkle over the toasted almonds and serve.
Friday, 4 October 2013
The 8th pint, a dead freezer, and cherry & almond crumble
I keep thinking that I've reached a point in my life where I no longer think about Blue being ill very much, and then something happens to make it all come rushing back like a steam train.
I certainly don't think about it every day any more, and it's not the first thing (nay, the only thing) that I'll talk about any more. Chances are, if I met you for the first time in person, these days, it would take a good few conversations before it actually came out that he'd been ill at all. There was a time when it was literally all I could talk about.
Fortunately, even the 'steam train' moments are becoming less and less frequent, and usually triggered by something other than a panic that he's relapsed - which was what usually used to make me think about it when he first came off his chemo. The lovely nurse who cared for Blue on his first terrible night in hospital - when we really thought he was dying before our eyes - lives in the same village as us. I see her often these days - she has 2 adorable girls now herself, and I can actually talk to her in the street without crying. I have come a long way.
I gave blood earlier in the week. This always reminds me of the bad times, but more so than ever this time, when I realised that I'd donated my 8th pint - equivalent to all the blood transfusions that Blue had during his treatment. I came over a bit funny and had to have an extra long lie down, and a bag of crisps as well as a pack of fruit shortcake biscuits and 2 glasses of the rather lurid lemon squash they hand out before I felt strong enough to wander home.
Fortunately, tea was pretty much already organised - one of our freezers gave up the ghost at the weekend, leading to a frantic reassessment of what we could chuck and what we could redistribute amongst the 2 other smaller freezers that we have, already pretty full. Bear in mind that we didn't have the option of cooking and re-freezing anything: if it couldn't be eaten then or in the next couple of days, or rehoused, it would have to go. Out went the swede soup dated 2010 and various small pots of unidentifiable stuff that had been in there so long the hastily scrawled labels had worn off... It's always slightly embarrassing, being presented so starkly with one's hoarding tendencies, but I've decided to rise above it. On the plus side, we've eaten the lamb shanks, some of the more identifiable soup, and lots of rhubarb. Blood donation evening, there was more identifiable soup and a fish pie. When Blue was ill, I had to cook fresh for him every day, regardless of how tired I was. I'd never have been able to feed him fish pie from the freezer.
More importantly than my inability to throw food away, do you remember all those delicious cherries I scrumped, back in the summer? I was so utterly delighted with the possibilities they presented, that while I was deliberating what to make, they pretty much all got eaten just like that from under my nose.
I managed to salvage some after a marathon stoning session (stoning the cherries - what did you think I meant?) and stashed about 800g away in the freezer for another day.
Well, 'another day' arrived - they were in the freezer that packed up, along with the fish pie and the lamb shanks...
I absolutely couldn't bring myself to chuck them out, despite the fact that they were scrumped as opposed to produced as a labour of love by the Husband in the garden - for start, they'd only been squirreled away for a matter of weeks - unlike the swede soup - and the stoning had taken a good couple of hours of my life, and given me black finger nails for a few days. On the other hand, as scrumped produce, they came lower down the priority rehoming list...
No longer luscious purple but rather duller, with much of the juice leached out of the fruit, although saved in the bowl they had defrosted in, they still tasted good. I thought pie, but couldn't face pastry. And anyway, to make a pastry worthy of my cherries, I needed an egg yolk, and as my chickens have completely given up laying, preferring to moult drastically and unattractively all over the garden, and I was feeling too weak after the blood donation to walk up to the butchers and buy some, I had to think again. I could have made jam but I wanted something lovely for pudding. Crumble was the obvious choice.
Comforting, homely, and in honour of Blue (who adores cherries and crumble) and all he went through in those dark days of leukaemia, and in recognition of the 8th pint, cherry and almond crumble it had to be.
Cherry & Almond Crumble
800g frozen cherries, defrosted, along with any juice that has leaked out
1.5tbsp cornflour
50g caster sugar
good pinch of cinammon
100g plain flour
80g porridge oats
40g ground almonds
100g demerara sugar
75g unsalted butter
Put the cherries and juice in a pan.
In a small bowl/cup/ramekin, mix the cornflour with some of the cherry juice, then tip pack in to the pan, along with the sugar and cinammon. Heat gently, stirring, till the juice all thickens up, simmer for a little, then scrape the cherries into your crumble dish and leave to cool.
Pre-heat the oven to 180C.
Make the topping by rubbing together all the ingredients into a rough, crumbley scrummy mess. Try not to eat it as it is - hard as it is to imagine, it WILL taste better baked.
Spread the topping evenly over the cherries then pop in the oven and bake for 20 minutes or so till the fruit is hot and bubbling and the crumble is golden brown.
Cherries and crumble both qualify, I'm sending this to this month's Alphabakes challenge hosted by Ros at More than the Occasional Baker and Caroline at Caroline Makes
I certainly don't think about it every day any more, and it's not the first thing (nay, the only thing) that I'll talk about any more. Chances are, if I met you for the first time in person, these days, it would take a good few conversations before it actually came out that he'd been ill at all. There was a time when it was literally all I could talk about.
Fortunately, even the 'steam train' moments are becoming less and less frequent, and usually triggered by something other than a panic that he's relapsed - which was what usually used to make me think about it when he first came off his chemo. The lovely nurse who cared for Blue on his first terrible night in hospital - when we really thought he was dying before our eyes - lives in the same village as us. I see her often these days - she has 2 adorable girls now herself, and I can actually talk to her in the street without crying. I have come a long way.
I gave blood earlier in the week. This always reminds me of the bad times, but more so than ever this time, when I realised that I'd donated my 8th pint - equivalent to all the blood transfusions that Blue had during his treatment. I came over a bit funny and had to have an extra long lie down, and a bag of crisps as well as a pack of fruit shortcake biscuits and 2 glasses of the rather lurid lemon squash they hand out before I felt strong enough to wander home.
Fortunately, tea was pretty much already organised - one of our freezers gave up the ghost at the weekend, leading to a frantic reassessment of what we could chuck and what we could redistribute amongst the 2 other smaller freezers that we have, already pretty full. Bear in mind that we didn't have the option of cooking and re-freezing anything: if it couldn't be eaten then or in the next couple of days, or rehoused, it would have to go. Out went the swede soup dated 2010 and various small pots of unidentifiable stuff that had been in there so long the hastily scrawled labels had worn off... It's always slightly embarrassing, being presented so starkly with one's hoarding tendencies, but I've decided to rise above it. On the plus side, we've eaten the lamb shanks, some of the more identifiable soup, and lots of rhubarb. Blood donation evening, there was more identifiable soup and a fish pie. When Blue was ill, I had to cook fresh for him every day, regardless of how tired I was. I'd never have been able to feed him fish pie from the freezer.
More importantly than my inability to throw food away, do you remember all those delicious cherries I scrumped, back in the summer? I was so utterly delighted with the possibilities they presented, that while I was deliberating what to make, they pretty much all got eaten just like that from under my nose.
I managed to salvage some after a marathon stoning session (stoning the cherries - what did you think I meant?) and stashed about 800g away in the freezer for another day.
Well, 'another day' arrived - they were in the freezer that packed up, along with the fish pie and the lamb shanks...
I absolutely couldn't bring myself to chuck them out, despite the fact that they were scrumped as opposed to produced as a labour of love by the Husband in the garden - for start, they'd only been squirreled away for a matter of weeks - unlike the swede soup - and the stoning had taken a good couple of hours of my life, and given me black finger nails for a few days. On the other hand, as scrumped produce, they came lower down the priority rehoming list...
No longer luscious purple but rather duller, with much of the juice leached out of the fruit, although saved in the bowl they had defrosted in, they still tasted good. I thought pie, but couldn't face pastry. And anyway, to make a pastry worthy of my cherries, I needed an egg yolk, and as my chickens have completely given up laying, preferring to moult drastically and unattractively all over the garden, and I was feeling too weak after the blood donation to walk up to the butchers and buy some, I had to think again. I could have made jam but I wanted something lovely for pudding. Crumble was the obvious choice.
Comforting, homely, and in honour of Blue (who adores cherries and crumble) and all he went through in those dark days of leukaemia, and in recognition of the 8th pint, cherry and almond crumble it had to be.
Cherry & Almond Crumble
800g frozen cherries, defrosted, along with any juice that has leaked out
1.5tbsp cornflour
50g caster sugar
good pinch of cinammon
100g plain flour
80g porridge oats
40g ground almonds
100g demerara sugar
75g unsalted butter
Put the cherries and juice in a pan.
In a small bowl/cup/ramekin, mix the cornflour with some of the cherry juice, then tip pack in to the pan, along with the sugar and cinammon. Heat gently, stirring, till the juice all thickens up, simmer for a little, then scrape the cherries into your crumble dish and leave to cool.
Pre-heat the oven to 180C.
Make the topping by rubbing together all the ingredients into a rough, crumbley scrummy mess. Try not to eat it as it is - hard as it is to imagine, it WILL taste better baked.
Spread the topping evenly over the cherries then pop in the oven and bake for 20 minutes or so till the fruit is hot and bubbling and the crumble is golden brown.
Cherries and crumble both qualify, I'm sending this to this month's Alphabakes challenge hosted by Ros at More than the Occasional Baker and Caroline at Caroline Makes
Thursday, 27 June 2013
Why Katie Piper made me cry
Ever since Saturday morning, when I blubbed shamelessly as Katie Piper talked frankly to a packed, and silent, Britmums Live audience, and then even more so, talking to her mum and Katie Hill (teary, tissue-less and overwrought, never have I felt less glamorous, let me tell you), I have been pondering why exactly she made me cry.
It's not just her story - the beautiful good time girl, going places (possibly - she is refreshingly candid about the career opportunities available presenting casino programmes on channel 999 at 2 a.m.) raped and then burned horrifically with acid thrown over her at the behest of a man who couldn't have her.
It's not just the fact that she can - and clearly throughout her recovery, did, laugh at her situation. Not at all of it, but at the comical moments that can often - and almost totally inappropriately - come in times of great trauma and distress, She tells a cracking story about squirting blackberry juice out of the feeding tube attached to her stomach while wearing a flesh coloured 'morph suit' (her 'earthworm Jim suit' - to stop the burns contracting) - but I guess you had to be there.
It's not just the fact that she has taken what has happened to her and survived in the most inspiring way, turning her experiences into a charity to support others who have been burned, filling gaps in the NHS provision, which, with the best will in the world, public money cannot currently cover.
It's not just that she is so disarmingly honest about the support she received from her family, about how dark the really dark times were, about how cruel people were to her, and about her agoraphobia.
All these things make her a truly remarkable survivor. It puts my life and the things that have happened to me sharply into perspective. But here's the thing. She gets annoyed when people start talking about something bad that happened to them and then they say "Oh but it's nothing like what you have been through". Why does she get annoyed? Well, you see as she puts it - it doesn't matter what 'it' is - if it's your worst thing, then yes it is bad, it is worth getting upset about.
What trauma have I suffered. Well let me tell you - if you didn't know already - my son had leukaemia. My lively 2 year old withered before my eyes, almost overnight. 9 months into treatment, he had no hair, was on the 2nd centile (from 98th when born) and the doctors were talking about feeding tubes. We spent endless hours in hospital. The drugs made him sick. He had blood and platelet transfusions. He had a terrifying allergic reaction to one of his drugs. I thought he might die. My son.
He had the disease. The Husband and I - we dealt with the fall out. And a new baby.
People say similar to me when talking about their children. People who have had what I consider to be equally traumatic experiences, or even people talking about a broken arm. They say "Oh but it's nothing like what you went through". Or they say "I don't think I could have got through what you did". To that I say, firstly, as Katie Piper says, it doesn't matter what it is - if it's the worst that you have had to deal with, then it's bad. It's not a question of degree. It is valid to feel distraught, lost, confused - even if you're dealing with chicken pox.
Secondly, and perhaps more importantly, you do have a choice. You can drown in the injustice of it all, or you can try and work out how to cope and get through it. I know someone whose son was at a similar age, living in the same village who died of a brain tumour when Blue was being treated. She and I were pregnant at the same time and gave birth to our second children within days of each other. She told me once that she thought she was lucky because I still had the uncertainty of whether Blue would survive hanging over me. She knew, so sadly, how her son's story ended, and she thought she was in a better position than me. I have never spoken to her about it, but I suspect this was one of her ways of coping.
I consider us to be lucky. Not that Blue became ill - I wouldn't wish that on anyone. But he's still here. We just passed the 4 years "off-treatment" point - one more to go before we'll get as much of an 'all clear' as they will give us. I haven't lost a child, been physically attacked or suffered any of the other terrible things that can happen, although if you want dark hours, I can give them to you in buckets. The important thing is that he has survived.
We are lucky too, to have survived as a family. Lots of people don't. Families break up under pressure, and it's hard, so hard to keep lines of communication open when you've been awake all night worried sick about your child, or had to go to work and leave your child as he goes into an operation because of a meeting you can't afford to miss. It's hard because day to day life becomes more difficult on every level physically and financially - do you know how expensive hospital parking is? You have to make decisions you never thought you would be faced with. It's hard but you choose to make those decisions in order to survive.
We had a choice, and what made me cry was hearing someone else who has survived - and is possibly still surviving - talking so eloquently about her choice. Katie Piper demonstrates so simply and so beautifully that you DO have a choice. Even in the darkest hours of your life, you can choose to be beaten by it all, or to fight. It takes a lot of energy and support, and it's not easy, but you can do it, be your injuries physically or emotional, whether you're the person who's been hurt or someone supporting and caring for that person.
And the relief of hearing someone else say all that made me cry.
It's not just her story - the beautiful good time girl, going places (possibly - she is refreshingly candid about the career opportunities available presenting casino programmes on channel 999 at 2 a.m.) raped and then burned horrifically with acid thrown over her at the behest of a man who couldn't have her.
It's not just the fact that she can - and clearly throughout her recovery, did, laugh at her situation. Not at all of it, but at the comical moments that can often - and almost totally inappropriately - come in times of great trauma and distress, She tells a cracking story about squirting blackberry juice out of the feeding tube attached to her stomach while wearing a flesh coloured 'morph suit' (her 'earthworm Jim suit' - to stop the burns contracting) - but I guess you had to be there.
It's not just the fact that she has taken what has happened to her and survived in the most inspiring way, turning her experiences into a charity to support others who have been burned, filling gaps in the NHS provision, which, with the best will in the world, public money cannot currently cover.
It's not just that she is so disarmingly honest about the support she received from her family, about how dark the really dark times were, about how cruel people were to her, and about her agoraphobia.
All these things make her a truly remarkable survivor. It puts my life and the things that have happened to me sharply into perspective. But here's the thing. She gets annoyed when people start talking about something bad that happened to them and then they say "Oh but it's nothing like what you have been through". Why does she get annoyed? Well, you see as she puts it - it doesn't matter what 'it' is - if it's your worst thing, then yes it is bad, it is worth getting upset about.
What trauma have I suffered. Well let me tell you - if you didn't know already - my son had leukaemia. My lively 2 year old withered before my eyes, almost overnight. 9 months into treatment, he had no hair, was on the 2nd centile (from 98th when born) and the doctors were talking about feeding tubes. We spent endless hours in hospital. The drugs made him sick. He had blood and platelet transfusions. He had a terrifying allergic reaction to one of his drugs. I thought he might die. My son.
He had the disease. The Husband and I - we dealt with the fall out. And a new baby.
People say similar to me when talking about their children. People who have had what I consider to be equally traumatic experiences, or even people talking about a broken arm. They say "Oh but it's nothing like what you went through". Or they say "I don't think I could have got through what you did". To that I say, firstly, as Katie Piper says, it doesn't matter what it is - if it's the worst that you have had to deal with, then it's bad. It's not a question of degree. It is valid to feel distraught, lost, confused - even if you're dealing with chicken pox.
Secondly, and perhaps more importantly, you do have a choice. You can drown in the injustice of it all, or you can try and work out how to cope and get through it. I know someone whose son was at a similar age, living in the same village who died of a brain tumour when Blue was being treated. She and I were pregnant at the same time and gave birth to our second children within days of each other. She told me once that she thought she was lucky because I still had the uncertainty of whether Blue would survive hanging over me. She knew, so sadly, how her son's story ended, and she thought she was in a better position than me. I have never spoken to her about it, but I suspect this was one of her ways of coping.
I consider us to be lucky. Not that Blue became ill - I wouldn't wish that on anyone. But he's still here. We just passed the 4 years "off-treatment" point - one more to go before we'll get as much of an 'all clear' as they will give us. I haven't lost a child, been physically attacked or suffered any of the other terrible things that can happen, although if you want dark hours, I can give them to you in buckets. The important thing is that he has survived.
We are lucky too, to have survived as a family. Lots of people don't. Families break up under pressure, and it's hard, so hard to keep lines of communication open when you've been awake all night worried sick about your child, or had to go to work and leave your child as he goes into an operation because of a meeting you can't afford to miss. It's hard because day to day life becomes more difficult on every level physically and financially - do you know how expensive hospital parking is? You have to make decisions you never thought you would be faced with. It's hard but you choose to make those decisions in order to survive.
We had a choice, and what made me cry was hearing someone else who has survived - and is possibly still surviving - talking so eloquently about her choice. Katie Piper demonstrates so simply and so beautifully that you DO have a choice. Even in the darkest hours of your life, you can choose to be beaten by it all, or to fight. It takes a lot of energy and support, and it's not easy, but you can do it, be your injuries physically or emotional, whether you're the person who's been hurt or someone supporting and caring for that person.
And the relief of hearing someone else say all that made me cry.
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