Why do I keep walking around with a knot in my stomach? Why do I keep bursting in to tears sitting in traffic on my way to work?
Because, no matter how well we think everything is going, it could all change in a moment - I can't get away from the feeling that it has all been too easy so far - yes, Sarah was diagnosed quickly (within 1 month of the first x-ray-some kids wait years before doctors recognise whats wrong), yes, Sarah coped with her treatment really well, yes, the surgeon said he got the whole tumour out and the operation was a complete success, yes, the tumour had a good response and was more than 90% dead when it was removed, and yes, although I didn't think it would ever happen, she is starting to walk again - but the truth is, we will never be able to relax again. I can't look to the future - I can't let myself look too far ahead - I keep saying to myself what if.....and its just not bl**dy fair.Every time she says she has a headache I panic - If she's tired, I panic - if she gets sweaty at night, I panic, and if, like last night she screams in pain because her leg is stuck in one position, I panic. We only went for her check ups 2 weeks ago, so I know its OK at the moment, but I can't ever see me not worrying whenever she says she doesn't feel well.
I am using this blog now as therapy, so excuse my ramblings - maybe I need counselling, maybe just a good holiday, but most of all what I need is my daughter to be told that she is completely cured, and we have absolutely nothing to worry about.But that just isn't going to happen. Hopefully, and I really mean hopefully, time will pass, check-ups will come and go, and life will get back to normal(or as normal as we will ever get). But to me, the further we get from end of treatment, the more the risk - and I just hate it!! I have no reason to feel like this - everything seems fine - Sarah is well, her leg is getting stronger, she is getting stronger,and life is good. I think, as a good friend said to me recently, it is just hitting me what we have been through - they said 'You have all coped so well - one day this will all hit you like a ton of bricks' - well I think it's hit!!
That's enough from me - now to Sarah!
Last Wednesday she did her first swimming gala since her diagnosis - and she was FAB!
She was self-consious, because she started in the water when everyone else dived in, but she swam well, and came 4th - missing 3rd place by 6 inches - I think if she could have managed a dive, she would have clinched it!She was cross she didn't get a medal, but her teacher made sure she got a trophy as he thought she did so well!Not awarded in front of everyone at the end, but that didn't matter. In the relay they came 3rd out of 3, but for me, just the fact that she was there and wanting to be part of it was fantastic - and very brave.Her friends were lovely too - they didn't blame her for swimming slowly - they told her she did really well, which was lovely.
Thursday, we set off for a lovely school day trip to Boulogne. I got to go as a parent helper, as I had to supervise Sarah, and it was a long, but enjoyable day. The weather was great, and Sarah managed to walk miles (on her crutches, but still!!) - from the top of the old town, right through and down to the sea, along the seafront, to the beach! It took about an hour in all, but I kept saying it was good training for the Race for Life!!
She bought a postcard and stamp (in French)and sent it to Daddy and 2 pain au chocolat in the boulangerie......good job I could remember a limited amount of French!! We returned at 10pm, and she was wacked out! Still, she got a lie in Friday as she had physio, so didn't have to get up 7am for school!
Saturday night, we went to the hockey club race night, and we won 2 spa vouchers for 'owning' a winning horse, and Sarah came 2nd in the 'money won' competition, and won a £40 voucher for an indian restaurant in Twickenham!! Good night all round!
Mothers Day was lovely too - we went for a walk to the park with her friend Eleanor(on 1 crutch all the way)and she walked her friends dog, and played on the swings for the first time in a year. It was so nice to see her swinging up and down, and looking like a normal child again. We then went out for a lovely meal at a fish restaurant before taking Katie back to school.
Normal life - oh how fabulous it all is, and how I soooo don't take any of it for granted!
(promise not to get all morbid in future - only positive thoughts from now on........)
Tuesday 24 March 2009
Monday 16 March 2009
Monday 16th March 2009
Not much to report except that SARAH WALKED TO HER FRIENDS HOUSE UP THE ROAD WITH NO CRUTCHES YESTERDAY!!!! OK, I held her hand, and she took loads of persuading, but she did it! She even managed to do proper walking steps, NOT big old limping steps, but PROPER steps.I was hoping this was the start of throwing thoses crutches away, but they have become so much part of her life, I think it will be as hard as giving up smoking! They are now more of a habit - she can walk without them, but doesn't want to-she feels safe with them, feels steady on them, and can move so much more quickly with them, that she just NEEDS them.........for now anyway.They are sort of welded to her hands!!When she walks, I have to remind her to walk slowly - then she actually steps as she should, and follows through with her other foot. Then its not a limp, but a step. When she rushes, she stomps and walks with a big jolt of the hip, which really isn't good. Still, it was a start, and it was great to see her walking up the road in the sunshine. As soon as she saw her friend from next door, she let go of my hand and pretended to do it by herself too - she obviously wants to show everyone she is almost back to normal!
Wednesday night is swimming gala, with Sarah in the butterfly race for the individual race and the medley relay - she's a bit embarassed that she won't be able to dive, and thinks everyone will be looking at her, but good for her she's even entered - and in the most difficult race of them all!!She's only doing it because no one else wanted to do butterfly! Not bad for a girl who only 14 weeks ago was till having chemotherapy!! I'm so proud of her I could burst!! I almost want to announce to everyone what she has been through before she starts, so they are as proud of her as I am, but that just wouldn't do!! Even if she comes last, I will give her the biggest cheer I can and wipe a small tear of pride away. This time last year she was swimming in the year 6 gala, with a sore leg, but still winning her race.How things have changed.Little did we know what was in store. It has come to the time, this time last year when things were being investigated. I find myself saying daily 'This time last year you were going for your first x-ray' and ' this time last year was when you fell over at the Middlesex Mini hockey tournament and screamed the place down'. Next week it will be the anniversary of her biopsy, and 7th April will be 1 year to the day when she was diagnosed with the 'BIG C'.I hope we have many, many more anniversaries like this, and all of then uneventful and not even worth talking about!.
On another note-God bless Jade Goody-not so lucky but just as brave. Sleep peacefully when its your time to go.xx
Wednesday night is swimming gala, with Sarah in the butterfly race for the individual race and the medley relay - she's a bit embarassed that she won't be able to dive, and thinks everyone will be looking at her, but good for her she's even entered - and in the most difficult race of them all!!She's only doing it because no one else wanted to do butterfly! Not bad for a girl who only 14 weeks ago was till having chemotherapy!! I'm so proud of her I could burst!! I almost want to announce to everyone what she has been through before she starts, so they are as proud of her as I am, but that just wouldn't do!! Even if she comes last, I will give her the biggest cheer I can and wipe a small tear of pride away. This time last year she was swimming in the year 6 gala, with a sore leg, but still winning her race.How things have changed.Little did we know what was in store. It has come to the time, this time last year when things were being investigated. I find myself saying daily 'This time last year you were going for your first x-ray' and ' this time last year was when you fell over at the Middlesex Mini hockey tournament and screamed the place down'. Next week it will be the anniversary of her biopsy, and 7th April will be 1 year to the day when she was diagnosed with the 'BIG C'.I hope we have many, many more anniversaries like this, and all of then uneventful and not even worth talking about!.
On another note-God bless Jade Goody-not so lucky but just as brave. Sleep peacefully when its your time to go.xx
Monday 9 March 2009
Monday 9th March 2009
Well, we can relax now - my breathe was held for 5 days while we went to our first appointment post chemo with Sarahs surgeon last Thursday, followed by our second clinic appointment with her consultant today.
Thursday, we went up to the clinic in Bolsover Street, expecting to see the fabulous Mr Pollock, but he was away. We saw some doctor in his team who was Greek, and who's name ended in 'opoulos'!!! We had to wait for x-rays for ages, as the room was so full, but had a full leg x-ray and a chest x-ray (that, it turns out, we weren't supposed to have !!). As I wasn't expecting the chest x-ray, I started hyperventilating a bit while we waited for the doctor to have a look at it. I really wasn't prepared at all! He examined Sarah and watched her faltering steps, and although her foot is turned out at a funny angle, he thinks it is just muscular, and it will improve on its own.He then had a look at the chest x-ray and said it looked OK. He would send the x-rays over to UCH so they had them on file (so I held my breathe a little while longer over the weekend, incase they spotted something this doctor didn't.)I nearly lost it on our way home - relief that he thought the x-rays were OK, mixed with a bit of fear still that they might not be as good as he thought. Why is this happening to my beautiful daughter? The most we should be worried about is too much make up and unsuitably short skirts, but to be honest, she could get away with murder at the moment as long as she's here with us and healthy! 'Life's a bitch and then you die' has never been more true.Thought the bad times were over, but every 2 months, they will be back to bite us on the bum, and remind us that life is precious, and we are to savour every moment.
Today, we set off back to UCH for our 2 monthly appointment with Sarahs consultant. We didn't get to see Maria this time (obviously, now she's finished treatment, she's not high on the priority list any more) but saw Yasmin, a lovely doctor who cared for Sarah on the ward for many chemo cycles. She asked how Sarah was doing, watched her walking, examined her, tickled her tummy by pressing it while examining her, and just generally wanted to know how she was.It all seemed to go well, they were very pleased with her progress, and all was well except her weight! Her challenge is NOT to put on any more by the next appointment. Sarah can't understand why she is putting on weight - she's gone from sitting in hospital and doing absolutely nothing, being pushed around in a wheelchair all day long, to not using a wheelchair for 3 months, walking everywhere, swimming 30-40 lengths once, and sometimes twice a week, and generally being active again, and still she has gained 4 kilos since January!! I try and get her to eat properly-she gets fruit in her lunch and no chocolate, but when we're not around, she must snack - short of locking all the food in a safe, and getting her to work out every night, I'm not sure what I can do to help her, anymore than I am doing now. Lets hope she grows 6 inches, and then it won't look so bad!!!Unfortunately, she's built like me, and she only has to look at a bar of chocolate, and she gains 2 pounds!!
But, apart from that, everything is fine this time around.No scares on the x-rays, no horrible news at the appointment, and we can all relax again until 11th May, when she has her next chest x-ray - and 8th June when she has the next leg x-ray. Fingers crossed everything will be OK then too.In the meantime, we will continue to spoil Sarah, let her get away with all sorts of stuff that Katie never got away with, and pray to God that everything will be alright forever.
Thursday, we went up to the clinic in Bolsover Street, expecting to see the fabulous Mr Pollock, but he was away. We saw some doctor in his team who was Greek, and who's name ended in 'opoulos'!!! We had to wait for x-rays for ages, as the room was so full, but had a full leg x-ray and a chest x-ray (that, it turns out, we weren't supposed to have !!). As I wasn't expecting the chest x-ray, I started hyperventilating a bit while we waited for the doctor to have a look at it. I really wasn't prepared at all! He examined Sarah and watched her faltering steps, and although her foot is turned out at a funny angle, he thinks it is just muscular, and it will improve on its own.He then had a look at the chest x-ray and said it looked OK. He would send the x-rays over to UCH so they had them on file (so I held my breathe a little while longer over the weekend, incase they spotted something this doctor didn't.)I nearly lost it on our way home - relief that he thought the x-rays were OK, mixed with a bit of fear still that they might not be as good as he thought. Why is this happening to my beautiful daughter? The most we should be worried about is too much make up and unsuitably short skirts, but to be honest, she could get away with murder at the moment as long as she's here with us and healthy! 'Life's a bitch and then you die' has never been more true.Thought the bad times were over, but every 2 months, they will be back to bite us on the bum, and remind us that life is precious, and we are to savour every moment.
Today, we set off back to UCH for our 2 monthly appointment with Sarahs consultant. We didn't get to see Maria this time (obviously, now she's finished treatment, she's not high on the priority list any more) but saw Yasmin, a lovely doctor who cared for Sarah on the ward for many chemo cycles. She asked how Sarah was doing, watched her walking, examined her, tickled her tummy by pressing it while examining her, and just generally wanted to know how she was.It all seemed to go well, they were very pleased with her progress, and all was well except her weight! Her challenge is NOT to put on any more by the next appointment. Sarah can't understand why she is putting on weight - she's gone from sitting in hospital and doing absolutely nothing, being pushed around in a wheelchair all day long, to not using a wheelchair for 3 months, walking everywhere, swimming 30-40 lengths once, and sometimes twice a week, and generally being active again, and still she has gained 4 kilos since January!! I try and get her to eat properly-she gets fruit in her lunch and no chocolate, but when we're not around, she must snack - short of locking all the food in a safe, and getting her to work out every night, I'm not sure what I can do to help her, anymore than I am doing now. Lets hope she grows 6 inches, and then it won't look so bad!!!Unfortunately, she's built like me, and she only has to look at a bar of chocolate, and she gains 2 pounds!!
But, apart from that, everything is fine this time around.No scares on the x-rays, no horrible news at the appointment, and we can all relax again until 11th May, when she has her next chest x-ray - and 8th June when she has the next leg x-ray. Fingers crossed everything will be OK then too.In the meantime, we will continue to spoil Sarah, let her get away with all sorts of stuff that Katie never got away with, and pray to God that everything will be alright forever.
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