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.


Mummy mania said...

wonderful, wonderful, wonderful post. You have been through so much and to be able to actually take a breath now and look back at it knowing you can look forward must be incredible. Well done, and enjoy!

ModernMom said...

You so deserve to be able to hope for a bright and healthy future. I love that you can see yourself as lucky. You are! You, and your daughter are strong women!
Thanks for sharing your thoughts, your story...

BNM said...

Such a wonderfully touching post. I have all my fingers crossed that everything gets better for you now - that the pain doesn't come back and that you and your family live a long and happy life together.

Tracey said...

How very bitter-sweet. Thank you so much for sharing. And Happy Birthday to Hattie.

Jen said...

MD Anderson in Houston is giving chemo treatments to some pregnant women now. I'm not sure they could have given your particular regimen, but they are making advances every day.

I'm glad everything is still looking good for you and hope you get to celebrate many more birthdays with Hattie.

Diney said...

Where you all are now is a wonderful place to be xxx

Anonymous said...

Very beautifully written. It encaptures many of the feelings I still have.... over 18 years ago our third child was diagnosed with an aggressive cancer, and over the course of the next year given chemotherapy and radiotherapy and then a major operation to remove the remains of the tunour in his abdomen. I barely dared to breathe properly for 5 long years, and yet gradually the green shoots of hope of a future life with him began to emerge. 18 years later he is a typical teenager in many ways: studying and has learned to drive. His illness and treatment was life changing for all our family. Most days even now I remember those dark days and feel humble and grateful that he has lived to grow up. I still try to value each day and treasure each of our children because you just never know what's around the corner. That's not meant to sound bleak and dramatic but a really positive "live in the present" outlook on life.

I often check in on your blog and send you good wishes for a continued remission and peace in your heart.

Rebecca S. said...

Kate, I'm just catching up now and was so very moved by your post. I think you should send it to the BBC or something - as you tell your story,the emotional part, so openly, and so well. I love that you feel hopeful these days and I wish you and Hattie a very happy birthday! xo

Kate said...

Thanks so much everyone for your lovely and supportive comments - they mean so much to me. This blog has really helped me to cope with everything, and I have felt the genuine support through the blogland waves!!

Kate said...

By the way, Anonymous, I wanted to thank you for sharing your story. I cannot think of anything worse than watching your child go through that - I truly can't. I tried to visit you to leave a comment, but am not sure if you have a blog. Anyhow, I send my good wishes to you too.

Modern Dilemma said...

Hi Kate, I popped over to say Hello after you left a lovely comment for me last week. I'm blown away by your blog. Your writing is amazing. I'm sitting here with tears streaming as I read yours and Hattie's story. I'm so happy to hear you are both well and that the future is looking positive. I've added myself to your followers and look forward to reading about all your adventures as you embrace that wonderful future with your family.

MD xx

PS Happy Birthday to Hattie too!

Mr London Street said...

It must be quite a feeling to have gotten from there to here and to be able to write about it so beautifully. Lovely stuff.