So we're nearly off and away. I'm very excited of course but am literally running around trying to get everything sorted and organised so I can pack the kids off to mum's and not worry more than lots and lots!! The weather is so terrible here at the moment that I'm keeping my fingers crossed for a bit of good weather. Where did Spring go?
I've got a pile of new books to read when we're away, including Hilary Mantel's new book, 'Wolf Hall', and I might try to get my hands on 'The Girl who Kicked The Hornet's Nest', which apparently is out in paperback TOMORROW! The problem is that if I start to read that, I won't be able to put it down. What great company I'll be.
I feel as if I need this break almost more than any other I've had - the aches and pains are still there, and I haven't had them checked out, but I'm ok with that. We'll see how things are when I come home.
That's it then for a week or so. I'm not taking my netbook with me. I was going to but instead I've decided to have a real break from everything including my writing. So I'll post when I get back. But I'm sure you'll all survive somehow without me. Ha ha.
Wednesday, 31 March 2010
Monday, 29 March 2010
Monday Morning City
The sooty streets are shiny with rain. Driving over the Tyne Bridge - watching the people hanging off ropes, dangling over the river repainting meticulously the bones and body of the bridge - the traffic slows to a stop.
In the centre of the city, the shoppers unconcerned with the rain clog the pedestrian avenue. It's Easter and people scurry in and out of the shops. Old women carry mountains of chocolate eggs for their grandchildren, choosing carefully for each beloved treasure. Younger women manoeuvre buggies laden like shopping trolleys, the child hidden among the wrapping, patient and resigned.
Outside the overheated shops the homeless Big Isssue seller competes for attention with the busking saxophonist and the Polish accordion player who's always in the same place.
Containing all these existences and many many more, the city heaves and swells around the dramatic river which travels onwards to the sea, gulls calling and squawking in the salty air.
In the centre of the city, the shoppers unconcerned with the rain clog the pedestrian avenue. It's Easter and people scurry in and out of the shops. Old women carry mountains of chocolate eggs for their grandchildren, choosing carefully for each beloved treasure. Younger women manoeuvre buggies laden like shopping trolleys, the child hidden among the wrapping, patient and resigned.
Outside the overheated shops the homeless Big Isssue seller competes for attention with the busking saxophonist and the Polish accordion player who's always in the same place.
Containing all these existences and many many more, the city heaves and swells around the dramatic river which travels onwards to the sea, gulls calling and squawking in the salty air.
Thursday, 25 March 2010
Seven Days and Counting
This time next week, I'll have dropped the kids with my mother and will be packing for our flight early Friday morning.
I CAN'T WAIT!
But I will miss Hattie especially. It's not favouritism, it's just that she's so small (nearly but not quite two). I hope she'll be ok - she'll wonder where I've gone whereas the others know. Should we take her with us? Surely not!
Still.
And as for the back ache - I'm still deliberating and kind of ignoring it until I decide. But, thanks for all your comments.....
I CAN'T WAIT!
But I will miss Hattie especially. It's not favouritism, it's just that she's so small (nearly but not quite two). I hope she'll be ok - she'll wonder where I've gone whereas the others know. Should we take her with us? Surely not!
Still.
And as for the back ache - I'm still deliberating and kind of ignoring it until I decide. But, thanks for all your comments.....
Tuesday, 23 March 2010
Worry is a Good Friend of Mine
I'm writing this post having just picked the kids up from school. It's not the best time - arguments about changing out of school uniform, clamouring for biscuits and general shouting is ringing through the house.
But I'm worried. The ache in my back which I wrote about a while ago still hasn't gone. It seems to come and go a bit, which the pain used to do when I was harbouring an enormous tumour! I don't know whether to go and get checked out. As usual it's so difficult trying to decide whether to open that particular can of worms or not. I think to others it always seems quite simple - go and get checked out! But to me it isn't that clear. I expend a huge amount of desperate energy while the tests are happening, and I suppose in a way I'm beginning to think that I'll know soon enough for definite if it has come back just by the way I'm feeling. But that's scary too. I'm so tired (as usual) and I caught sight of my reflection today accidentally and was quite shocked how pale and generally grotty I look. That could be cancer-grotty or getting over some crap sinus-y thing-grotty. Who bloody knows.
Rog and I are off to sunny Majorca next Friday, without the kids! I'm looking forward to it more than I could possibly say. I don't want to spoil the run up to the trip by rushing hysterically in and out of hospital having tests, but neither do I want to spoil the holiday by worrying. However, if it has come back and I find out now I won't have the holiday at all. And I'm determined to have the holiday. Do I sound mad? Probably.
It's exhausting this worry it really is. And of course now I have to make tea and do all the other never-ending stuff which the kids expect and need. People are always telling me how lucky I am to have the kids and how they must help me to get through all of this. Yes... I'm lucky. But there have been many moments back when I was having my treatment, and subsequently too when I would dearly appreciate some space to sit down with a cup of tea, rest and worry in peace.
But I'm worried. The ache in my back which I wrote about a while ago still hasn't gone. It seems to come and go a bit, which the pain used to do when I was harbouring an enormous tumour! I don't know whether to go and get checked out. As usual it's so difficult trying to decide whether to open that particular can of worms or not. I think to others it always seems quite simple - go and get checked out! But to me it isn't that clear. I expend a huge amount of desperate energy while the tests are happening, and I suppose in a way I'm beginning to think that I'll know soon enough for definite if it has come back just by the way I'm feeling. But that's scary too. I'm so tired (as usual) and I caught sight of my reflection today accidentally and was quite shocked how pale and generally grotty I look. That could be cancer-grotty or getting over some crap sinus-y thing-grotty. Who bloody knows.
Rog and I are off to sunny Majorca next Friday, without the kids! I'm looking forward to it more than I could possibly say. I don't want to spoil the run up to the trip by rushing hysterically in and out of hospital having tests, but neither do I want to spoil the holiday by worrying. However, if it has come back and I find out now I won't have the holiday at all. And I'm determined to have the holiday. Do I sound mad? Probably.
It's exhausting this worry it really is. And of course now I have to make tea and do all the other never-ending stuff which the kids expect and need. People are always telling me how lucky I am to have the kids and how they must help me to get through all of this. Yes... I'm lucky. But there have been many moments back when I was having my treatment, and subsequently too when I would dearly appreciate some space to sit down with a cup of tea, rest and worry in peace.
Sunday, 21 March 2010
My Blog Award!
Thanks Nic at Diary of a Domestically Challenged Housewife for my lovely award.
But, Oh no - now apparently I have to tell you 10 random but true things about myself. That's kind of hard. The pressure! They may not be very interesting, I feel I must warn you. But here they are anyhow. Glass of wine to hand??
1. I wish I could play jazz clarinet in smoky bars, looking and sounding unbelievably amazing. This is as opposed to wondering if I should pick up the clarinet I haven't properly played since I was a teenager, and make some strange and not very groovy sounds.
2. I have always wanted to travel on the Trans-Siberian Railway. I have not given up on this dream despite the three small children which hold me down (or should that be anchor me ) in sunny Newcastle-upon Tyne.
3. I used to ride horses and I want to ride horses again.
4. I love to read in bed in the morning with many many cups of coffee. This doesn't happen very often.
5. I am a huge, huge, huge Bob Dylan fan.
6. I want a campervan.
7. I am going to the Green Man music festival this summer in the Brecon Beacons, Wales. We are camping... with all the kids!
8. I have a quick and fiery temper. Patience is a virtue which unfortunately I largely lack. I'm waiting for motherhood to mellow me!
9. I like cooking and love eating good food. Alas the waif-ish look is not for me. I used to be more waif-like though. Three pregnancies, life-threatening illness and severe and unwavering exhaustion plus an enforced, very severe and very early menopause don't help. Excuses, excuses!
10. I want to write a novel and see it published. I want this very, very much.
So, there you are. Fascinating, I'm sure you'll agree.
I'm passing this award onto:
My old friends,
Diney at Older Mums are Fun
Tracey at Uno, Dos, Tracey
Rebecca at Letters to the World
Anita at Beyond the Diapers and the Spills
and a new find of mine: Karen at Brighton Mum - Teenage Angst, whose blog I really enjoy reading as well.
Thursday, 18 March 2010
I'm Not Seventeen
I really can't believe that I am 40. Nearly 41 actually.
I had one of those moments today sitting in the car waiting for school to finish. Do you know what I mean? When you feel as if you have just been jolted from a dream into reality and you are shocked by what that reality is! I think it was the song which was playing on the radio - I was transported back to being 17, and when Hattie suddenly made a noise in the seat behind me and I came to, I just could not believe that all those years had passed. I could not believe it. I felt like examining the stranger's face in the mirror.
And then I went to get the kids and took them swimming.
But the strangeness has stayed with me. I'm sure there's a lesson there - to appreciate what I have right now. I've had quite a lot of those lessons recently. Otherwise I can see that I'll be 80 (I bloody hope!) and not be able to believe that I'm not 40. But human nature being what it is - or maybe it's just my nature - it seems a tough lesson to learn.
It was such fun being seventeen though.
I had one of those moments today sitting in the car waiting for school to finish. Do you know what I mean? When you feel as if you have just been jolted from a dream into reality and you are shocked by what that reality is! I think it was the song which was playing on the radio - I was transported back to being 17, and when Hattie suddenly made a noise in the seat behind me and I came to, I just could not believe that all those years had passed. I could not believe it. I felt like examining the stranger's face in the mirror.
And then I went to get the kids and took them swimming.
But the strangeness has stayed with me. I'm sure there's a lesson there - to appreciate what I have right now. I've had quite a lot of those lessons recently. Otherwise I can see that I'll be 80 (I bloody hope!) and not be able to believe that I'm not 40. But human nature being what it is - or maybe it's just my nature - it seems a tough lesson to learn.
It was such fun being seventeen though.
Monday, 15 March 2010
Playing on the Beach This Weekend
Here we are playing on the beach. Hattie is wearing her new blue coat which is way too big for her, but she doesn't mind.
Sunday, 14 March 2010
What I Remembered Today
This is what I remembered today, after my beautiful son and daughter burst in to my room clutching cards, flowers, presents and chocolates for Mother’s Day, the baby shouting 'Mummy, Mummy' from her cot in the other room. When they left me alone with my coffee and breakfast in bed, carried upstairs on a teetering tray, this is what came into my mind.
.............................
“I’m going to wrap this cloth around your head. Now, turn your head to the side and keep it there. Please don’t move or try to look at what the doctor is doing."
The nurse’s hands held my head still and in place. I fixed my eyes on a spot on the wall.
“Right – I think the anaesthetic’s ready. It’s all numb there? You’ll feel some pushing and shoving. With you young ones it can be quite hard to get the valve into the artery. It shouldn’t hurt though. Let me know if it does.”
Squeaking my assent I gritted my teeth as the revolting tugging and pulling sensations began in my numb chest. I was having my Hickman Line put in in preparation for my intensive chemotherapy which would start later that day. The day before we had celebrated my daughter’s third birthday, a week too early as I’d be in hospital on her actual birthday, but she wouldn’t know. My new daughter, born eight weeks early and currently in the Special Care Baby Unit in an incubator was learning to feed from a bottle – no breastfeeding for me anymore – and I was missing her feed. I hated missing her feeds. I’d spent the morning over in the maternity part of the hospital and had left part of my heart over there with her as I lay on the operating table.
The Hickman line was being attached to the main artery above my heart so that the heavy-duty chemotherapy which was going to be dripped into me over a period of four days and nights, every few weeks, could do its work. Blood could be taken from this line and antibiotics or anything else administered.
“At least it’ll mean that we won’t be prodding you with needles, morning, noon and night.”
I was sceptical that this was such a major advantage and more so when I discovered that I would not be able to have a bath for the next six months or so in case the ends of the lines became wet. The two bizarre snaky white tubes, six inches long, which would hang out of my chest would need to be covered when I showered. Apparently women usually coiled them in their bra during the day and then tucked them in a little bag which hung around their neck at night to prevent them catching on anything. Hmmm. I was not convinced by these jolly descriptions although I was to find myself doing all these things eventually as a matter of course.
Back on the table the squelching and the pushing became quite unbearable. Sweating profusely I began to seriously wish that I had accepted the offer of a sedative before the procedure. I’d turned it down because I’d decided that I didn’t want to be struggling with the after-effects of the sedative when my chemotherapy begun.
“Gosh – this is really tough!” the surgeon joked. “You’re giving me a run for my money here!”
The nurse could feel the stress pouring off my skin and I could feel the sweat trickling down my face, turned as it was to the side away from my upper right chest.
“You’re doing so well. We’re nearly done now. Take some deep breaths.”
I began to cry. My children – my four year old son, and three year old daughter and the little scrap of a person, vulnerable and tiny in her cot in the SCBU were all apart from me and would be for patches of time over the coming months. I was due to have a bone marrow transplant in four months and would possibly be in hospital for up to five weeks. It was all too much.
Later with a big bandage over the contraption in my chest I wept again as I was taken to my room on the ward in the old part of the Victorian hospital, due for demolition later that year to be re-built with all mod-cons. It was cold, there was no TV and couldn’t have been more bleak.
“I’m leaving,” I sobbed to Roger, hysterically struggling with my clothes. “I can’t stand this. I can’t stay here. It’s horrible.”
“You know you can’t. You have to stay. They’re coming with your chemotherapy in a while. You’ll be ok.”
The desperate strain reflected back from my misery on his face. But they heard me sobbing. They moved me to a different room – a little less bleak and I calmed a little.
Later still, hooked up to my chemotherapy, the big bag of poison dripping slowly into me, hooded in green plastic to protect it from the light, I buzzed the nurse.
“Is it possible that I could be feeling sick already?”
She handed me a bowl in reply and pushed some anti-sickness drugs into my line.
Lying alone in my bed, trying not to get tangled up in the tube going from the drip-stand into my line, Roger gone home to the kids via the SCBU to check on the baby, I wondered if I was going to survive. It was all so desperately dreadful; the buzzing of patients needing the nurses, the sickness lingering at the edge of my consciousness, the sickness which was to get so much worse with subsequent treatments, and the time slowly ticking away through the night keeping me from my children. Floating between sleep and waking I felt entirely and absolutely alone.
That is what I remembered today.
.............................
“I’m going to wrap this cloth around your head. Now, turn your head to the side and keep it there. Please don’t move or try to look at what the doctor is doing."
The nurse’s hands held my head still and in place. I fixed my eyes on a spot on the wall.
“Right – I think the anaesthetic’s ready. It’s all numb there? You’ll feel some pushing and shoving. With you young ones it can be quite hard to get the valve into the artery. It shouldn’t hurt though. Let me know if it does.”
Squeaking my assent I gritted my teeth as the revolting tugging and pulling sensations began in my numb chest. I was having my Hickman Line put in in preparation for my intensive chemotherapy which would start later that day. The day before we had celebrated my daughter’s third birthday, a week too early as I’d be in hospital on her actual birthday, but she wouldn’t know. My new daughter, born eight weeks early and currently in the Special Care Baby Unit in an incubator was learning to feed from a bottle – no breastfeeding for me anymore – and I was missing her feed. I hated missing her feeds. I’d spent the morning over in the maternity part of the hospital and had left part of my heart over there with her as I lay on the operating table.
The Hickman line was being attached to the main artery above my heart so that the heavy-duty chemotherapy which was going to be dripped into me over a period of four days and nights, every few weeks, could do its work. Blood could be taken from this line and antibiotics or anything else administered.
“At least it’ll mean that we won’t be prodding you with needles, morning, noon and night.”
I was sceptical that this was such a major advantage and more so when I discovered that I would not be able to have a bath for the next six months or so in case the ends of the lines became wet. The two bizarre snaky white tubes, six inches long, which would hang out of my chest would need to be covered when I showered. Apparently women usually coiled them in their bra during the day and then tucked them in a little bag which hung around their neck at night to prevent them catching on anything. Hmmm. I was not convinced by these jolly descriptions although I was to find myself doing all these things eventually as a matter of course.
Back on the table the squelching and the pushing became quite unbearable. Sweating profusely I began to seriously wish that I had accepted the offer of a sedative before the procedure. I’d turned it down because I’d decided that I didn’t want to be struggling with the after-effects of the sedative when my chemotherapy begun.
“Gosh – this is really tough!” the surgeon joked. “You’re giving me a run for my money here!”
The nurse could feel the stress pouring off my skin and I could feel the sweat trickling down my face, turned as it was to the side away from my upper right chest.
“You’re doing so well. We’re nearly done now. Take some deep breaths.”
I began to cry. My children – my four year old son, and three year old daughter and the little scrap of a person, vulnerable and tiny in her cot in the SCBU were all apart from me and would be for patches of time over the coming months. I was due to have a bone marrow transplant in four months and would possibly be in hospital for up to five weeks. It was all too much.
Later with a big bandage over the contraption in my chest I wept again as I was taken to my room on the ward in the old part of the Victorian hospital, due for demolition later that year to be re-built with all mod-cons. It was cold, there was no TV and couldn’t have been more bleak.
“I’m leaving,” I sobbed to Roger, hysterically struggling with my clothes. “I can’t stand this. I can’t stay here. It’s horrible.”
“You know you can’t. You have to stay. They’re coming with your chemotherapy in a while. You’ll be ok.”
The desperate strain reflected back from my misery on his face. But they heard me sobbing. They moved me to a different room – a little less bleak and I calmed a little.
Later still, hooked up to my chemotherapy, the big bag of poison dripping slowly into me, hooded in green plastic to protect it from the light, I buzzed the nurse.
“Is it possible that I could be feeling sick already?”
She handed me a bowl in reply and pushed some anti-sickness drugs into my line.
Lying alone in my bed, trying not to get tangled up in the tube going from the drip-stand into my line, Roger gone home to the kids via the SCBU to check on the baby, I wondered if I was going to survive. It was all so desperately dreadful; the buzzing of patients needing the nurses, the sickness lingering at the edge of my consciousness, the sickness which was to get so much worse with subsequent treatments, and the time slowly ticking away through the night keeping me from my children. Floating between sleep and waking I felt entirely and absolutely alone.
That is what I remembered today.
Friday, 12 March 2010
Blocked!
I've been lacking inspiration for my posts in the last couple of days - I don't know why because I think a lot and sometimes I think my thoughts are highly entertaining. Somehow it's not translating though - no you needn't agree QUITE so readily!
I do have a concern today - I've woken up with with quite an ache in my upper back, and if you've been reading this blog for any length of time you'll understand why that's immediately worrying for me. I think I'm just generallly achy and tired but that specific pain is alarming. If the cancer returns there I've less than a 10% chance of surviving. Best not to go there in any way, shape or form.
I think I'll give up on trying to post today. I'm going to make a cup of tea and read my book for a while as Hattie has just settled for her sleep. I should be hanging out the washing and tidying the kids' room or even trying to get on with my writing... but no! Today I'm skiving.
I do have a concern today - I've woken up with with quite an ache in my upper back, and if you've been reading this blog for any length of time you'll understand why that's immediately worrying for me. I think I'm just generallly achy and tired but that specific pain is alarming. If the cancer returns there I've less than a 10% chance of surviving. Best not to go there in any way, shape or form.
I think I'll give up on trying to post today. I'm going to make a cup of tea and read my book for a while as Hattie has just settled for her sleep. I should be hanging out the washing and tidying the kids' room or even trying to get on with my writing... but no! Today I'm skiving.
Thursday, 11 March 2010
Comments!!!
I'm having a few 'comment' problems. Think it's sorted now. If not, would someone email me to let me know. Thanks.
By the way Hattie and I did go to the park this morning. We fed the ducks, played on the swings, admired the squawking peacock and walked a long way. A much more satisfactory morning was had by all.
By the way Hattie and I did go to the park this morning. We fed the ducks, played on the swings, admired the squawking peacock and walked a long way. A much more satisfactory morning was had by all.
Wednesday, 10 March 2010
Seeking a Bendier Me
I took the baby to 'baby dancing' this morning. As we pretended to be running around, swinging and playing in the park, I looked out of the window out at the beautiful spring day and I wondered why we weren't actually in the park!
I'm not feeling great at the moment - really tired and achy, trying to tell myself everything's ok - and I realised that sometimes I need to do the things I know would be best rather than what I think I should do. I don't think Hattie would have minded walking in the park, feeding the ducks and looking at the animals. Sometimes I don't want to be part of a group, doing what I'm told - and I don't think Hattie does either.
I need to get fit - doing those kinds of activities (dance classes with the kids for example) reminds me how much my body has suffered over the past couple of years. I'm so stiff and inflexible - I need to start doing stuff to become fitter, stronger and more bendy! Walking, Swimming? Yoga? Pilates? Riding? Running? What's your advice? Help me out here. I need some informed ideas......
I'm not feeling great at the moment - really tired and achy, trying to tell myself everything's ok - and I realised that sometimes I need to do the things I know would be best rather than what I think I should do. I don't think Hattie would have minded walking in the park, feeding the ducks and looking at the animals. Sometimes I don't want to be part of a group, doing what I'm told - and I don't think Hattie does either.
I need to get fit - doing those kinds of activities (dance classes with the kids for example) reminds me how much my body has suffered over the past couple of years. I'm so stiff and inflexible - I need to start doing stuff to become fitter, stronger and more bendy! Walking, Swimming? Yoga? Pilates? Riding? Running? What's your advice? Help me out here. I need some informed ideas......
Monday, 8 March 2010
What I Did This Weekend - and other thrilling notes
I had my chocolate by the way. In case you're wondering.
So - our weekend went like this....
Scrapped dance classes for various kids in favour of a long and happy family walk. Well Rog and I were happy and the kids took it in turns to be happy while the others moaned generally, complained of welly-related problems specifically, and dropped various aspects of clothing pretty much continuously. Hattie has lost her hat - say no more.
We hastily put the kids to bed in the evening and settled down to watch 'The Hurt Locker' which strangely was already on our cable new releases. I was not at all sure that I wanted to see this but Rog assured me I'd get into the mood for a depressing war-film very easily indeed. And I was gripped and moved in pretty much great and equal amounts. But I hate the title. No-one knows how to say it - is the emphasis on the 'hurt' or the 'locker' or equally on both? How pretentious to give a film a name which even after watching it, one is still no wiser as to what it means! I had to do some online searching to discover the truth. And apparently it's wartime slang for 'a place of extreme pain'. There you go. But as for how to say it, I'm still none the wiser.
Yesterday I took Ed to his riding lesson and made fish pie - that was about the sum total of the excitement.
Actually though, I do love taking Ed riding. It was a beautiful spring morning and the metro trains thundered above us over the viaduct framed by a cold but bright blue sky. The stables are right in the middle of the city with the outdoor arena literally underneath the arches of the viaduct jostling for space between tarmac and scrub. The ponies are deeply unconcerned by the regular rumbling and rattling of the trains - more bothered I think by the drips of water which fall many feet from the iron rafters of the bridge to land anywhere in and around the arena. Sometimes, if it's been raining these drips become something more like a stream. But not yesterday. Spring was in the air even in the city itself and Ed rode tall in his new hat and back protector. I'm not at all sure that this is a past-time I really want to encourage - it's expensive and not ideal I guess for a boy with haemophilia. But Ed enjoys it and I enjoy it too, remembering my idyllic country childhood when I was lucky enough to be able to ride my own hairy, muddy pony every day.
My kids are having a different kind of childhood to the one I had. They're city kids but with the advantage of living near the most glorious countryside - Northumberland is truly breathtaking with a fabulous coastline. They have their Grandma's pub by the sea to visit just an hour's drive away and the beautiful and truly remote cottage up in the Highlands of Scotland where we're planning to spend a few weeks this May and summer. So maybe they have the best of both worlds in some ways. But I do still hanker after that country idyll.
Maybe we'll move someday in pursuit of the dream- if we can bear to uproot ourselves from what really feels like our family home.
So - our weekend went like this....
Scrapped dance classes for various kids in favour of a long and happy family walk. Well Rog and I were happy and the kids took it in turns to be happy while the others moaned generally, complained of welly-related problems specifically, and dropped various aspects of clothing pretty much continuously. Hattie has lost her hat - say no more.
We hastily put the kids to bed in the evening and settled down to watch 'The Hurt Locker' which strangely was already on our cable new releases. I was not at all sure that I wanted to see this but Rog assured me I'd get into the mood for a depressing war-film very easily indeed. And I was gripped and moved in pretty much great and equal amounts. But I hate the title. No-one knows how to say it - is the emphasis on the 'hurt' or the 'locker' or equally on both? How pretentious to give a film a name which even after watching it, one is still no wiser as to what it means! I had to do some online searching to discover the truth. And apparently it's wartime slang for 'a place of extreme pain'. There you go. But as for how to say it, I'm still none the wiser.
Yesterday I took Ed to his riding lesson and made fish pie - that was about the sum total of the excitement.
Actually though, I do love taking Ed riding. It was a beautiful spring morning and the metro trains thundered above us over the viaduct framed by a cold but bright blue sky. The stables are right in the middle of the city with the outdoor arena literally underneath the arches of the viaduct jostling for space between tarmac and scrub. The ponies are deeply unconcerned by the regular rumbling and rattling of the trains - more bothered I think by the drips of water which fall many feet from the iron rafters of the bridge to land anywhere in and around the arena. Sometimes, if it's been raining these drips become something more like a stream. But not yesterday. Spring was in the air even in the city itself and Ed rode tall in his new hat and back protector. I'm not at all sure that this is a past-time I really want to encourage - it's expensive and not ideal I guess for a boy with haemophilia. But Ed enjoys it and I enjoy it too, remembering my idyllic country childhood when I was lucky enough to be able to ride my own hairy, muddy pony every day.
My kids are having a different kind of childhood to the one I had. They're city kids but with the advantage of living near the most glorious countryside - Northumberland is truly breathtaking with a fabulous coastline. They have their Grandma's pub by the sea to visit just an hour's drive away and the beautiful and truly remote cottage up in the Highlands of Scotland where we're planning to spend a few weeks this May and summer. So maybe they have the best of both worlds in some ways. But I do still hanker after that country idyll.
Maybe we'll move someday in pursuit of the dream- if we can bear to uproot ourselves from what really feels like our family home.
Thursday, 4 March 2010
Wednesday, 3 March 2010
Thanks
This is a thankyou. To Tracey at uno,dos, Tracey for your thoughtful message on my last post. You are right - I do need to 'listen' to what the information I read is telling me. I subsequently read that people who undergo bone marrow transplants can struggle for quite a while with long-term fatigue. Apparently it is a well known side effect.
It has been useful to read all this stuff which I had been putting off. It has reiterated what a tough time I've been through in terms of treatment - and reminded me how amazing it is that I'm still here to write this. I really do need to let myself relax more and remind myself that I'm really not 100% yet although I look as if I am. And that's partly the problem. I feel as if people are saying - you're out of hospital, a year away from your treatment. Why aren't you ok? But maybe they're not, maybe that's what I'm saying to myself. Anyhow - if anyone is saying that, I'd point out that I have had extremely high dose chemotherapy and a bone marrow transplant, plus radiotherapy. Not to mention a caesarean and a new baby while that was happening. And all that happened in the past 22 months. Couuld that be why I'm struggling with this overwhelming exhaustion?
It's helped to know all of this and to see it written in black and white. When I was going through it I literally took one step after another and kept my head down. Now perhaps I'm starting to process what happened.
I have decided to try to make early nights a priority for while. It can't hurt can it? Maybe it'll help. And I need some help that's for sure.
It has been useful to read all this stuff which I had been putting off. It has reiterated what a tough time I've been through in terms of treatment - and reminded me how amazing it is that I'm still here to write this. I really do need to let myself relax more and remind myself that I'm really not 100% yet although I look as if I am. And that's partly the problem. I feel as if people are saying - you're out of hospital, a year away from your treatment. Why aren't you ok? But maybe they're not, maybe that's what I'm saying to myself. Anyhow - if anyone is saying that, I'd point out that I have had extremely high dose chemotherapy and a bone marrow transplant, plus radiotherapy. Not to mention a caesarean and a new baby while that was happening. And all that happened in the past 22 months. Couuld that be why I'm struggling with this overwhelming exhaustion?
It's helped to know all of this and to see it written in black and white. When I was going through it I literally took one step after another and kept my head down. Now perhaps I'm starting to process what happened.
I have decided to try to make early nights a priority for while. It can't hurt can it? Maybe it'll help. And I need some help that's for sure.
Tuesday, 2 March 2010
That old devil again
Oh dear. What did I do last night? Well, I gave in to the awful demon which hovers sometimes on my shoulder and for the first time since I was diagnosed with non-Hodgkins' Lymphoma, I looked the disease up on the internet.
From the outset I'd decided to entirely trust my doctors and not to read lots of scary, complex stuff which I'd half understand. And I stuck to it. The battle seemed too overwhelming without confusing the issue. I was very clear-headed about this decision much to the bemusement of some of my friends.
But last night for a couple of hours I surfed around. My version of the disease is very rare. Last night I found out just how rare. I found descriptions of the type of chemotherapy I'd had with medical analyses regarding its harrowing nature. There were accounts of deaths having undergone the chemotherapy I had, and accounts of deaths after the stem cell transplant I underwent. There were reports of the long-term effects of the chemotherapy - heart disease and other cancers.
But worst of all I stumbled across a study written for a medical journal. In this study out of 152 people who presented with NHL only 7 had the type of NHL which I had. Five years later, out of the 7 only 3 were stll alive and they had all had surgery to remove the tumour in their chest which I didn't. My (enormous) tumour was shrunk by the chemotherapy and I still have a lump of scar tissue left in my chest. Of the 4 who died, 2 died of chemotherapy related issues while having treatment, one died after the cancer had returned having been in remission for 6 months; and one died when the cancer returned after 46 months!! Oh my god! My consultant very clearly told me back in October that I wouldn't be anywhere near safe or even with the danger considerably reduced until 3-5 years have passed. That's not until 2012-2014. So I knew that. But imagine sailing along 46 months into remission feeling ok when the bastard returns. That's nearly 4 years. I've only been in remission for 1 year. It's all too much.
Of course it does NOT NOT repeat NOT help to read all these things. I've been feeling much more positive since my scan in January and have been more able to look into the future with something approaching equanimity. And I really have been shaken by all that I read - and there was much more than what I have described here. I feel quite traumatised really although reading all this hasn't told me much that I didn't know. It's just very very hard to read it all in black and white. Rog is very cross with me for doing this and upsetting myself although when I was first diagnosed he confessed that he'd spent hours looking online as well. I don't feel that I can burden my family and friends with all these new worries or rather these old worries which have reared their ugly heads again. So I'm using my blog instead. I hope you don't mind.
I think I need to try to rise above the anxiety although that's easier said than done. But, it is easier than it was. I hope it is anyhow. It's not feeling so easy at the moment.
However, it's another lovely spring day. Perfect, now - which is all anyone of us have after all.
From the outset I'd decided to entirely trust my doctors and not to read lots of scary, complex stuff which I'd half understand. And I stuck to it. The battle seemed too overwhelming without confusing the issue. I was very clear-headed about this decision much to the bemusement of some of my friends.
But last night for a couple of hours I surfed around. My version of the disease is very rare. Last night I found out just how rare. I found descriptions of the type of chemotherapy I'd had with medical analyses regarding its harrowing nature. There were accounts of deaths having undergone the chemotherapy I had, and accounts of deaths after the stem cell transplant I underwent. There were reports of the long-term effects of the chemotherapy - heart disease and other cancers.
But worst of all I stumbled across a study written for a medical journal. In this study out of 152 people who presented with NHL only 7 had the type of NHL which I had. Five years later, out of the 7 only 3 were stll alive and they had all had surgery to remove the tumour in their chest which I didn't. My (enormous) tumour was shrunk by the chemotherapy and I still have a lump of scar tissue left in my chest. Of the 4 who died, 2 died of chemotherapy related issues while having treatment, one died after the cancer had returned having been in remission for 6 months; and one died when the cancer returned after 46 months!! Oh my god! My consultant very clearly told me back in October that I wouldn't be anywhere near safe or even with the danger considerably reduced until 3-5 years have passed. That's not until 2012-2014. So I knew that. But imagine sailing along 46 months into remission feeling ok when the bastard returns. That's nearly 4 years. I've only been in remission for 1 year. It's all too much.
Of course it does NOT NOT repeat NOT help to read all these things. I've been feeling much more positive since my scan in January and have been more able to look into the future with something approaching equanimity. And I really have been shaken by all that I read - and there was much more than what I have described here. I feel quite traumatised really although reading all this hasn't told me much that I didn't know. It's just very very hard to read it all in black and white. Rog is very cross with me for doing this and upsetting myself although when I was first diagnosed he confessed that he'd spent hours looking online as well. I don't feel that I can burden my family and friends with all these new worries or rather these old worries which have reared their ugly heads again. So I'm using my blog instead. I hope you don't mind.
I think I need to try to rise above the anxiety although that's easier said than done. But, it is easier than it was. I hope it is anyhow. It's not feeling so easy at the moment.
However, it's another lovely spring day. Perfect, now - which is all anyone of us have after all.
Monday, 1 March 2010
Spring?
Am posting this post (??) from my new Toshiba netbook. I love it very much. I bought it for myself on the understanding that I would, really really would, write regularly. Not only on my blog, which recently has been a bit neglected but also taking care of my other projects which also easily become buried under a pile of domestic chaos.
To change the subject completely now, I have to be very British and comment on the weather. It's a beautiful spring day. After three solid days of rain - when doing anything not in the house has been a serious hassle - even walking to the car - the sun is out, it's cold but not freezing and the sky is blue. The birds are shaking out their bedraggled feathers and it feels like spring. Hooray for the first day of March. I can feel my spirits lift - and recently they've been rather down. Life's hard isn't it? You have to take your pleasures where you find them don't you? The past couple of years have taught me that.
To change the subject completely now, I have to be very British and comment on the weather. It's a beautiful spring day. After three solid days of rain - when doing anything not in the house has been a serious hassle - even walking to the car - the sun is out, it's cold but not freezing and the sky is blue. The birds are shaking out their bedraggled feathers and it feels like spring. Hooray for the first day of March. I can feel my spirits lift - and recently they've been rather down. Life's hard isn't it? You have to take your pleasures where you find them don't you? The past couple of years have taught me that.
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