Kate's Blog

Follow me if you will as I try to navigate through the ups and downs of my world.

I'm writing this blog to help me make sense of all that has happened - from my diagnosis with non-Hodgkins lymphoma while pregnant with my third child in May 2008
, through to my reflections on chaotic family life as I try to pick up the pieces of my life again.

The kids are so small, and I'm working hard to keep us all safe and to stay in remission.

Stay with me - it won't be all doom and gloom I promise!

Wednesday, 21 April 2010

Two Years On

This week, surprisingly in many ways, has become a very significant week for me.

It's nearly Hattie's second birthday and the two year anniversary of the week that an x-ray discovered a huge tumour in my chest. I've come on such a journey in those two years; such a significant and torturous journey that I'm nervous to try to write this post - I need to do my experience justice, I need to untangle it and describe it so that I can live it and know it and put it away into the past. Does that make sense?

On Monday I took Hattie back to the Special Care Baby Unit where she'd spent her first 8 weeks of life. This is where the start of my drama unfolded itself as I visited her from a different part of the hospital, unhooked from my chemotherapy drip for a precious half an hour. It's where the photo was taken of me holding her on my 39th birthday, less than two weeks after her birth with Ed and Martha either side of me, my hair shorn and skin yellow, looking as close as I hope I ever come to death before I'm an old old woman.

I wasn't sure they'd let me in to the unit - I imagined they'd be busy and distracted, and I pressed the buzzer very tentatively, memories flooding back.

"Oh yes! I remember you, of course I do! Come in."

As I wheeled Hattie in her buggy through the unit she was wriggling to get down. How different to the last time she was here. We'd had to rush her back to the unit when she'd been out with us for a day as she was too still and pale. She'd had a blood transfusion and another overnight stay. Now, a beautiful, fiery and opinionated blonde toddler - a miraculous metamorphosis. All around in the bays were tiny tiny babies. I found myself standing in front of the bay which Hattie had been in for weeks. One of the nurses pointing to a space remembered exactly where Hattie had been.

Everyone was so pleased to see us well and healthy.

"You look a whole lot better than you did when we last saw you," I heard over and over again. Smiling, nearly crying really absolutely overwhelmed by the smells and sounds, I said helplessly over and over again,

"I am well, I'm very well. I just wanted to say thank you to you all!"

The nurse who'd spent a lot of time with me when Hat was in the SCBU had a day off, so I didn't see her much to my sadness. I'll never ever forget that she'd gone to buy a cake and made a card with Hattie's hand and footprints which was waiting for me on top of Hattie's incubator when I came in on that birthday. Of course I still treasure that card today. I asked the other staff to remember me to her and to thank her again for me. As we walked around Hattie became increasingly and uncharacteristically quiet. It almost felt as if she knew or remembered something about the place we were in.

Later downstairs in the hospital cafe I sat with my coffee and didn't know what to think or feel. This was where I'd sat so many times before. And now, here I was in another place and time with Hattie covered in strawberry cupcake - I figured she deserved a strawberry cupcake - and with a second chance maybe.....maybe... ahead of me.

And then on Wednesday I went to see my consultant for my three-monthly check. Not that there's much to do these days because unless I go and mention some specific ache or pain to be investigated, they're not routinely scanning me anymore and nothing really happens at these appointments. But she told me that she'd just been to Switzerland to speak at a conference about non-Hodgkin's Lymphoma. I had Hattie with me at this appointment - just to set the scene, squeaking and wriggling - and I have to say that my first thought was one of envy. Imagine having a high-powered career and having to be in Switzerland rather than making tea seven days a week! Anyhow. She said that there'd been lots of positive feed-back regarding the prognosis of people with my very rare form of the disease (she'd only treated 15 people with it in her whole 25 year career) since some new treatment was trialled, given along-side the chemotherapy. And I was lucky enough - and I use the word 'lucky' carefully - to be one of the first to be given this treatment. Although the cancer is so rare that there aren't loads of usuable statistics regarding prognosis, it seems that the use of this treatment, Rituximab, means that survival rates might change from as low as 30% (beyond terrifying) to over 80%! That's incredible.

I'm quite overwhelmed really, when I think of how many times I've been lucky since I was diagnosed - given that I was so bloody bloody unlucky to have developed this fearsomely aggressive cancer in the first place. I was lucky that the A and E doctor listened so carefully to the desciption of my symptoms, when I walked into the hospital off the street at 30 weeks pregnant and that she didn't just dismiss me as tired and pregnant as my GP had done only 3 weeks earlier. By the time someone did listen to me I apparently only had about three weeks to live and obviously my unborn baby was in great jeopardy too. It also turned out to be for the best, in some wierd and scary way, that the GP did dismiss my symptoms when he did, as every day counts with premature babies and they would have made me have Hattie much earlier then the 32 weeks at which she was born. And at nearly two she is fine now - no-one would be able to guess at her bumpy start. There was a very narrow window of time when I could be diagnosed and treated with any chance of survival and Hattie also would be ok. One of us or both of us could so easily have died.

I was lucky to say the least that I fell into the hands of my consultant - one of the top doctors in the country in her field. I was lucky that she knew about this new drug and its possible benefits and was able to put together a treatment schedule which in her own words was 'aggressive' in order to give me the best chance of survival. I was lucky I survived the actual caesarean - they were worried that my heart and lungs might not cope with the pressure of the tumour while I was under anaesthetic, and I was lucky that Hattie went from strength to strength every day. I was so so lucky that my body responded as well as it did to the treatment I had for those long months. And two years on Hattie and I are so so lucky that we're here, in remission and thriving.

It's kind of hard to express my thoughts about all of this and impossible in some ways to describe the desperate path down which I've been forced to travel. Snapshots, experiences, emotions, smells and tastes are locked inside me and only inside me. Even the people closest to me cannot share those. Perhaps they may become woven into pieces of writing I've yet to create, hidden or maybe disguised inside other shapes. It's such a cliche to talk about the way an experience like this changes one's life - that it makes one appreciate the small things in everyday life for their value. I'm still working on that one really, but it is true too, like all cliches. Having one's assumption of immortality shaken to the core, an assumption which we all fundementally carry around childlike inside ourselves, is like living through a private and invisible earthquake. And that is certainly life-changing.

The doctor said that she doesn't think it's going to come back. She's never said anything approaching that before. She knows that I know that that statement doesn't come with any kind of guarantee. Earlier in our appointment she'd reiterated that people were 'in trouble' if it did return. My regular check-ups will continue until I've been in remission for five years - and I'm only one and a bit years into that period. But I felt the significance of what she said and understand it to be in some way an echo of the way my own confidence - the confidence that maybe, perhaps, I can think again about having a future - is very slowly returning, jerkily in fits and starts but returning nonetheless.

At the end of the appointment I walked down the corridor of the hospital holding Hattie's hand, the doctor on the other side. She asked Hattie if she could hold her other hand and Hattie very solemnly gave it to her.

"This is the first time I've held a hand as little as this for a very long time. It's lovely!"

And as we went our separate ways it was funny to think that in some ways she envied me my life at that moment just as I had earlier envied her hers.


Two years ago my family were just embarking upon this journey. Now we're here in this place, in our present. The most I can hope for - and it's hoping for the world - that the ripples from that stone thrown into the centre of our lives continue to reverberate outwards until they're so faint that they're no longer visible. Just known about and of course never forgotten.

Saturday, 17 April 2010

Sunday's Coming.....

Today I wore my new Merrell walking boots when we went to Fountain's Abbey. They helped me to walk miles and miles - or so it felt. I came home and cooked pitta bread pizzas for the kids and aubergine parmigiana for us. Now I have quite a sore throat and quite a croaky (I think alluring) voice.

Tomorrow signifies back to school stuff - lots of washing and ironing of work shirts and school uniform. Martha has been invited to one of those annoying birthday parties which pepper the school term-time weekends. Of course she doesn't think they're annoying - for her they signify social success and prompt great excitement. Which is why they cannot be missed on any account. So in between the domestic jobs and cooking a promised roast chicken, I'll be spending two hours watching Martha shrieking with friends.

If I can't go back to Majorca, I'll take Ed and Martha at school all day and a bit of peace and quiet for Hattie and I.

By the way - the writing of this post is being regularly interrupted by purring kittens wrapping themselves around my neck and falling on random keys. I think I've done quite well.

Friday, 16 April 2010

Election Fever

So, we're coming up for election here in in the UK. Last night was the first of the American-style televised debates between the three leaders of the main parties. Frankly I found that it made frustrating and depressing viewing.

It was clear to me that Gordon Brown was the most statesmanlike, most convincing, most confident and articulate and by far the least oily of the three. However the pundits and polls did not agree with me. But, I kind of don't think they would whatever had been said. I'm not sure that Gordon Brown can do anything anyhow to change the set perception - he's got the hardest job, trying to persuade people to vote for him again, well of course it's human nature to criticise, moan and complain especially here in Britain and such fun too. Our health service and education system are generally infinitely better now than they were when the Conservatives left Downing Street - and most importantly Labour have a moral and social conscience sadly absent from the "I'm all right Jack" philosophy of the Tories.

Change is always tempting. But remember those dreadful dreadful Thatcher years when all that was good in our country was destroyed? It'll happen again if we let ourselves be duped by the empty, smarmy rhetoric of the Tories. Never was Shakespeare's phrase, 'smiling damned villain' more apt when one thinks of David Cameron. Things could be SO much worse and people should be very, very careful what they wish for.

As for Nick Clegg - he was ok. Reasonably reasonable, measured with little to lose and everything to gain. But he didn't come over as a prime minister and he scored easy points for being personable in a manufactured kind of way.

Here's my election poster then, stuck in the window of my blog: VOTE LABOUR! You'll regret David Cameron, I predict, and when you do it'll be far, far too late.

Wednesday, 14 April 2010

Camping and Kittens

We went camping. All was fine, even if it did take us a little longer than planned to put up our huge and complicated 6 man tent. I did cook risotto on our camping stove and all seemed to be going swimmingly. We went to a tiny and beautiful campsite in the Lake District. There was plenty of space for Hattie to run free and horses, lambs and cows to admire on the farm.

And then night fell. And the temperature fell... to -4!! I don't think I've ever been so cold. We realised that our sleeping bags were hopeless for such temperatures. I was really worried about the kids, especially Hattie as she's so small, I wasn't sure that she'd be able to snuggle herself in her sleeping bag through the night. But they all seemed fast asleep, while Roger and I froze through to our bones and lay awake as the minutes ticked by.

Eventually morning came - needless to say we were up very, very early. There was frost all over the tent and all over the field we were in. We headed into Keswick for a huge revitalising breakfast. Cooking another meal on our stove balanced upon the frosty grass was beyond me at that point.

And after a cold and grubby morning we packed up and came home. I'm getting better sleeping bags before we try that again.

And today we got the kittens - they're crazy, like a couple of extra toddlers. Just what we need!! But the kids are delighted. We just have to teach Hattie not to squeeze them quite so enthusiastically!

Sunday, 11 April 2010

Home Again

We're back!

It was lovely.... just lovely. We read, swam, sunbathed when the weather allowed it, and explored the island in our TINY hire car. We had coffees galore in lovely cafes and wandered around markets, ate seafood, and didn't have to worry about anyone else but ourselves for a whole week. It really was as good as it should have been.

The hotel had a spa - and when we arrived at the hotel I was handed a voucher. Not only had my mother volunteered to have the kids she'd also booked me an amazing massage with a chocolate wrap - Easter theme I guess!?! So Saturday saw me covered in chocolate and wrapped in clingfilm with only paper knickers to keep me company. Thank heavens it WAS only Saturday - and the beauty therapist - who did see me!

I read voraciously, but did manage to talk to Roger too. Now I'm right in the middle of 'The Girl Who Kicked The Hornet's Nest' and back with the kids. I cannot put it down but am having to. Torture!

The kids were really well behaved when we were gone and had a fantastic time with my mum. Hattie was furious with me the whole of yesterday, saying 'stay Grandma' and pushing away my kisses. She's melted a bit today - but still mutters about her Grandma if she thinks I'm getting too familiar. I think she did really miss me - but I know she was just fine with my mum too.

My aches and pains have pretty much disappeared - that's good! But I did discover, as I'd suspected, that my tiredness is not just to do with the kids. I had my moments of exhaustion in Majorca and my energy levels were not brilliant. Of course back home I don't have the option of taking a nap when things become too tiring, and that's really what I need to do.

And tomorrow, we're taking the kids camping for a couple of days. The forecast is ok, but I'm feeling weak at the prospect. Can we remember how to put up the tent? I'll have to somehow make risotto on our camping stove. Oh oh oh - it's a far cry from lounging in Majorca. And we're getting our kittens on Wednesday. Much excitement all round and debating about names. Daisy and Bill we think. Don't ask!