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!



Tuesday, 29 December 2009

A Monster in the Room

We went to the sales yesterday. Were we crazy? The city was packed with people jostling for bargains. We bought a television!! For the past seven years we have happily watched a bulky, old fashioned box - in no way could it be described as chic, slim and flat-screened. But we haven't noticed or cared that there has been a revolution in the kind of televisions most people watch. A revolution - that's the right word I think.

But now - after one discussion - we have a huge, flat-screened monster which looms scarily in the corner of our room. I ask again. Were we crazy?

And we bought saucepans. I'm very pleased with them - very, very pleased with them. Do I sound 40? I fear I do.

And don't ask about the sinusitis.

Sunday, 27 December 2009

Post-Christmas Blues

It's the day after Boxing Day and I'm feeling a bit Christmassed out. The kids had a lovely time, which is after all the most important thing after all that rushing around, and I spent my days and nights coughing. I think I've averaged four hours' sleep a night for the past couple of weeks.

The sinus thing decided not to let up and as a result I'm feeling a bit fed up on that front. To say the least. What I wanted for Christmas is six months of good health without being constantly reminded through coughs, colds, shingles, sinusitis, tonsilitis and flu of what has happened to me in the past couple of years. I was at the docs on Christmas Eve and she said that the only comfort she could offer was that the rubbishness (is that a word??) of my immune system shows that the chemotherapy and radiotherapy had been as effective as possible - so effective that it wiped all good things out too and I'm constantly ill. Maybe I'll get that Christmas present just a bit late and be fighting fit through January. I hope it'll be a happy new year in that respect.

We're still at my mum's but heading home later - lots or re-packing here and then unpacking at home. And then another Christmas family gathering on Tuesday to catch up with my brother, sister-in-law and nephews who have spent Christmas with the other side of their family. And then New Year's Eve.

But, I did get some lovely presents and ate some lovely food (too much I fear). And our lovely woodburner waits for us at home. And some (relative) peace and quiet.

Monday, 21 December 2009

End of Advent - the Woodburner Arrives

What a lovely squat, black and very hot woodburner is cooking in our kitchen now. The perfumed smell of the wood fills our house. I can't be long writing this because I have to go and re-re-readjust the draught regulator (technical term? I think not) to get the optimum flame on my wood. I think I may spend many hours burning wood and watching the flames. It's all too exciting - a new loft bedroom and a new woodburner. And it's Christmas.

Sunday, 20 December 2009

Squabbles, Bugs and Woodburners

So, the school holidays are here. The children are so excited that I think they'll combust before Christmas gets here. And they're fighting all day long, at least they did today. They don't seem to believe that Santa (or Mummy and Daddy), 'knows when you've been bad or good so be good for goodness sake!'.... However much I remind them.

I think my posting may be a little patchy over the coming holiday time - it's going to be hard to find time to think over the next couple of weeks, or to sit down to write without constant demands. I'm determined to keep going with some writing though, so we'll see.

Anyhow - I'm still feeling not at all well and am getting well and truly fed up with it. And the baby has broncholitis which can be a little scary in the middle of the night - last night she was so short of breath we almost took her to A and E. And I think Ed is revving up for one of his regular ear infections. Well, I suppose there's time for us all to recover before Christmas Eve if we get a move on.

And on a more cheerful note - we're getting our new woodburning stove tomorrow. Just at the right time to snuggle around it as the snow falls outside. Lovely.

Friday, 18 December 2009

Curry

Have you ever made a very hot curry with very, very hot chillies and then put your fingers in your eyes?

I was trying to blast away my sinusitis which makes me feel as if someone is squeezing my neck until my eyes feel as if they might pop out. But all I've achieved is that now my eyes are burning as well.

Apart from that I'm fine.

Really. And I couldn't taste the bloody curry anyway. Apparently it was hot, garlicky and gingery. I wouldn't know.

Thursday, 17 December 2009

Teaching Again

Yesterday, I did some tuition for my neighbour's daughter who is studying A-Level English. In my previous, pre-illness incarnation, I was an English teacher. I was working in a high school, heavily pregnant with the baby, the others two kids at nursery when I was diagnosed.

Although we're skint, I haven't really been in a rush to go back to work. I want to spend time with Hattie as I missed out on so much at the beginning. And really, I'm pretty sure that although I've taught on and off for the last seventeen years I don't want to resurrect my teaching career. I'm considering re-training in social work when Hattie is three.

But, last night I really, really enjoyed talking about Philip Larkin. It was good to feel useful and productive in a wider context rather than just on the domestic front, and good to use my brain in a different way again. It reminded me that teaching literature to A-Level students was always the best part of the job for me - mostly because it makes me read and re-read all the greatest stuff, and because it's the best fun discussing it and encouraging students to love it too. After all, since childhood reading has always been my fiercest passion.

Maybe there's life in this old teacher yet!

Wednesday, 16 December 2009

Grotty

Oh - am feeling rubbish. This sinus thing just sets in and stays. I haven't got time for feeling ill - I feel as if I have every moment between now and Christmas mapped out with jobs to do. I need to build in some MORE rest and recuperation between now and Christmas Day or I'll implode. More(??!!) after your weekend away? I hear you ask!

By the way have just found a good website called pinkstinks.co.uk. It kind of reflects some of my thoughts regarding trying to bring up my daughters in a less 'pink' and more empowering way. Check it out if this interests you - it's quite an eye-opener.

Sorry that I'm being so lacklustre today. I'll be back to my sparkling self (ha, ha) when, um, I'm back to my sparkling self I guess.

Monday, 14 December 2009

Un-taping and Moving On

Have writer's block today - or should that be poster's block? Not helped by awful sinusitis which refuses to let up.

We had a lovely weekend by the way- did absolutely nothing which was a very novel experience indeed!

But now have returned to a crazy list of stuff to do. Have spent the morning rushing about picking up floor tiles to build a hearth for our new woodburning stove which is arriving next week (hooray), and emptying the cellar in search of a very elusive box of Christmas decorations. We're getting our tree tonight and the kids are bursting with excitement.

I really remember taping the box up last January while I was still in the middle of radiotherapy treatment, and wondering if I would be around a year later to untape it. It was a very poignant and scary moment which has stayed with me for the year. And here I am!

Christmas, at times, is hard to manage this year too with that fear still very real, but it feels like a real achievement to be here struggling with that box in the cellar. Sometimes I stop in my tracks and just can't believe all that's happened to me. But anyhow, if nothing else, I'm looking forward to the untaping of the box for many years to come!

Thursday, 10 December 2009

We're Going AWOL

We're going away this weekend - without the kids!! I'll just repeat that... without the kids! We're taking ourselves off tomorrow afternoon after dropping the children at my mother's house. It's a lovely hotel we're going to - but I'm just so looking forward to having some peaceful time without constant clamouring demands.

Inevitably tonight I'm feeling hassled. There seems so much to do before Christmas that I feel as if I can't spare the time to be away, and I need to pack for the kids' weekend as well as ours. And our car seems to have developed a sudden, mysterious and tremendously helpful electrical problem which probably means that the battery will be flat tomorrow morning. I can envisage a dawn call to the RAC and then a trip to the garage before we try to set off in the afternoon. Aaargh! But once we're on our way I think I'll be able to chill a bit.

So, I doubt I'll be posting anything here over the weekend. I think I'll leave my lap-top at home and take some books instead. I'm sure you won't miss me and I'll be back home on Monday with a list a mile-long to work through in the pursuit of the perfect Christmas.

Wednesday, 9 December 2009

Christmas Past

It’s the morning of Christmas Eve. My brother and I go downstairs especially early and stand outside the sitting-room door. The sign reads, ‘No Entry, by Order of the Angel’. It doesn’t occur to us to peep inside. We know we must do as we are told or the Angel won’t come when it gets dark – and then we can’t have Christmas. My sister toddles over – just two – she is old enough to pick up on our bursting excitement.

“It’s the Angel”, I say. “We can’t go in there until tonight. It’ll be dark and there’ll be the Christmas tree with candles and presents underneath.”

Having a mother with Austrian-German ancestry meant that our Christmases were a strange mixture of different traditions. Explaining the Angel at school to friends obsessed with Father Christmas was tricky and full of danger that She (the Angel, not my mother) might be the cause of teasing to be avoided at all costs.

“What do you mean she lights the candles? What candles? You don’t see your Christmas tree until Christmas Eve? When it’s dark?”

Explaining that we opened our presents on Christmas Eve, not on Christmas Day and that the Angel came back later on to bring our stockings, caused - at best - more pitying consternation . I think my brother and I separately but quickly decided not to even try to describe how we would huddle together behind our sitting-room door and listen to our dad talking to the Angel.

“I heard her knocking on the door!”

We rush to the closed hall door and listen to our dad,

“Hello, come in. How are you? Have you come far?”

As the catch on the sitting-room door rattles we rush through and stand in the hall straining our ears to hear her replies as my dad continues to chat.

“Would you like a drink? No? Well I suppose you need to keep a clear head with all that flying ahead of you tonight. Are you alright with that candle? Can I help you?”

Literally hopping with silent thrill we listen, listen, listen, trying to quiet our sister who exclaims loudly at intervals, trying to hear the voice of an angel.

“Be quiet! If she hears us she’ll be scared and fly away. Shhh.”

At last we hear my dad saying goodbye.

“Well, it’s been lovely to see you. Take care and fly carefully. Goodbye!”

We hear the sitting-room window open and crowd to the little window in the porch where we can see my father just closing the window.

“I saw her, I saw her!”

We’re thrilled, convinced beyond question we can see her flying off into the Christmas night sky.

My dad tells us that we can come in and we enter. The room is beautiful, breathtaking, and transformed. Touched by the Angel the place glows with the candles on the tree and those dotted around the room. Firelight moves against the hearth. The tree looks beautiful. We see the wooden robin perched on a high branch, the star on the top and all the other familiar decorations which thickly hang with artistic abandon year after year. Underneath the tree are presents spread out – surreptitiously we check that they are spread thickly under the tree. Around the room, bowls of crisps and dried fruit are laid. Coke and lemonade stand alongside wine and whisky. This is enormously exciting to us – through the year we feel horribly deprived of such delectable treats compared to our friends, but not tonight.

“Get what you want and then come and sit down,” mum says, pouring juice for my sister. We fly about deliriously happy, grabbing handfuls of crisps and nuts. Finally we sit, all of us in our traditional Christmas places, and my dad settles on the floor next to the presents ready to choose them one at a time and give them out. He waits until the lucky person has opened, admired and shown off before moving to the next one. So the excitement of present giving is drawn out to the last possible moment.

Later it’s frankfurters with herring and potato salad with fruit salad and cream for pudding. Unfailingly, for forty years I’ve eaten this on Christmas Eve. Unfailingly, the idea is always better than the eating, and unfailingly every year we’ve considered eating something different. But the strength of the tradition passed down from my German/Austrian grandparents to my mother and her brother and sister, and then to us, is too great a bond with the past to break. It’s frankfurters for us, I fear, for many Christmas Eves to come.

Monday, 7 December 2009

Our House

I'm tired today - you want to know why? Because I am so excited about our new loft bedroom that I can't sleep properly in it! Childish? Yes, very. But if you knew the blood,sweat and tears that have occurred over the completion of our loft conversion, you'd be excited too. It's all so glamorous up there at the moment - like a little oasis away from the noise of the rest of the house. And because we live in the city, we were short on views. But not anymore. Now, up in my lovely bedroom I can see over the rooftops to the purple Cheviot Hills beyond, the spidery wind turbines on the hills in County Durham as well as across the mosaic of the city itself.

Our house is coming up to its 100th birthday - and in a way I feel as if we have given it a present. It's a lovely, if tatty, Edwardian house and we've been here for nearly 5 years. Before that a family lived here for a short while and before that the original owners lived and died inside this house. But in all that time the loft has been waiting - the beams straining under the roof, the chimneys standing un-noticed sentinels - for some attention and loving care. And now the chimney seems to sway against the sky as I lie in bed and watch its silhouette, close enough to touch if I lean out of the window.

For the first time in this house we've enough room to move around each other without collisions and without stuff piled into every corner. We sort of plan to move into the country in the next couple of years; out of all my family, I'm the only city dweller. But it occurs to me that maybe we're beginning to turn this house into a home and maybe we're going to find it hard to leave.

Sunday, 6 December 2009

My First Blog Award - Hooray!!


Thanks Jen at Starting Over for my lovely award. It's all been tricky for me as I can't figure out how to put the award icon thingy on the post or create links!! Hmmm. I'm so rubbish at technical stuff. But I will pass on the award to 5 people and hope that they don't mind/are pleased or whatever!! Even though they are all way more popular and way more 'followed' than me.... and even though I enjoy reading all the blogs I follow for loads of different reasons.

a cat of impossible colour - lovely writing about lovely writing...

AbodeOneThree - More fabulous writing about all sorts of things.

A Beautiful Truth - check it out for yourself.

Blackberries to Apples - I've just found this blog through Blogs of Note so she probably doesn't need anymore accolades but I just can't help it.

Tale Peddler - Lots of lovely things to read, look at and think about.

But, as I say - I have a long list of blogs I follow, so if you're at a loose end, check the others out too!

Saturday, 5 December 2009

Finding Me

Sometimes I look back on my life, look back to when I was young - 18, 19, 20 - and if I strain hard enough I can just about remember and feel some of the echoes of the person I was then. Some things are definitely an improvement nowadays. I'm more aware of my strength, am more able to be honest about myself - I suppose I know myself better is the short of it.

But - there is a loss too. I had so much excitement at times about what the future might hold. I was a romantic, longing to travel to distant shores - and I did manage some pretty amazing journeys. I felt that there was something good coming my way, and I had space to contemplate what that might be, space to rest and space to think. I was lonely of course at times, especially through my late twenties and early thirties when I would worry that I wouldn't meet my soulmate and have my children - but the potential was there. And I forged my own path to suit myself.

And now I have so much - my three children and my husband and home. And I'm happy, of course I'm happy, but I wish it wasn't so hard to forget that underneath the weight of domestic duties and mundane parenting stuff - parts of my 20 year old self still exist. It's so easy to lose a sense of yourself I think as you get older and days are filled with other people's noise and demands. You remember your immediate needs but forget those more profound and spiritual ones which your soul needs to feel good and satisfied. Or maybe that's just me.

But I'm newly resolved to try to enjoy the everyday a bit more - not always to wish the moment away or look towards the next task. I think we need to have more fun in our family. Rog and I need to be more conscious that we enjoy each other's company - and that we value what we have. Weeks like the one we've had focus the mind - that's for sure. And I'm promising myself to spend more time encouraging the buried parts of me to struggle to the surface a little more. I need to re-find myself.

Wednesday, 2 December 2009

Results

I got the results of the blood test this morning - all good thank god or someone. So the plan is to have a CT scan which is scheduled in January. The consultant was very reassuring that she had no concerns that the cancer had reappeared.

I can't really describe what it was like sitting in the waiting room surrounded by ill people, some weeping, while I waited for 40 minutes past my appointment time to be seen. The memories of what I've been through crowd fast upon the uncertain future I face, while somehow I try to manage the present. Waiting to hear news like that is pretty much as desperate as it gets - I can think of worse situations to find oneself in, but not many.

Anyhow - with a clean-ish bill of health (ignoring the major sinus-y cold to which I've succumbed through stress and lack of sleep over the past week) I can move forward again, resume where I left off and look forward to Christmas. Talking of Christmas, I'd better get going......

Tuesday, 1 December 2009

My Latest Rant!! Distraction if Nothing Else

‘It’s Pirates or Princesses, Mummy’, my four year old daughter informs me importantly as she hands me a letter from the school explaining that the children can dress up for ‘Children in Need Day’.

My six year old son Ed hands me the same letter, ‘I’m going to be a pirate – I need a sword!’

I ask Martha if she wants to be a pirate too. Ed looks at me as if I’m crazy. ‘She’s got to be a princess. It says on the letter.’ I explain that it doesn’t say that on the letter, it says that they can choose what they want to be and that Martha might choose to be a pirate.

‘I want to be a pirate!’ Martha announces and I privately exult until she comes back the day before the big day. ‘None of the other girls are being pirates, I want to be a princess!’

And princess she is, down to the hastily acquired tiara and pinkest dress she can find in her drawer.

Bloody school, bloody Geordies who love their pink, princess girls, bloody crazy country. Why should a school which seems sensible in all other ways, which has just received an ‘outstanding’ in its last Ofsted Inspection and which appears to think deeply about equality of opportunity for all, assume that the most exciting thing a girl can dress up as is a bloody princess.

This pink, glittery, princess thing is so imbued in our culture. My contention – being a Southerner at heart - is that it is especially alive and kicking up here in the North-East. Maybe I’m wrong. Maybe this disease at the heart of our society is endemic everywhere. I don’t believe that anyone at the school even considered the message they constantly send girls and boys about what their gender might signify both now and in the future. And parents collude from the earliest they can – princess duvets, fairy wallpaper, pink, pink, pink. What the hell is a princess these days? How can you become one? Who would want to become one? Do we want our daughters to lisp prettily as they shake out their pink skirts. Is this what we want to teach our girls about what it means to be female? We may as well encourage our daughters to dress up as supermodels – that’s a noble, attainable and interesting career. Or a celebrity – how about that? Is this the ultimate fantasy of femininity? If you are reading this as a woman, do you recognise this as a useful and workable definition of your life and self?

It’s a scary thing being a mother of daughters these days. I want my daughters to grow up strong: proud of their gender, proud of their femininity and with a powerful self esteem. I want them to be able to believe that they can achieve the same that their brother can. I don’t want them obsessed with their bodies and their pretty faces, beautiful as they are. I want them to work hard and set themselves ambitions which they can strive for and maybe achieve. You think I’m missing the point and it’s all just a bit of fun? Well, that’s up to you. I don’t believe that it’s healthy or funny for my daughters to want to be a bloody princess or for my son to expect them to be, and I’m constantly amazed that sensible, seemingly intelligent women continue to collude with this rubbish.

Monday, 30 November 2009

Hospital

Went to the hospital today - a very stressful experience all round. I had a chest x-ray which was clear thank god. The original tumour was in my chest and I have scar tissue there which everyone is especially worried about. I had radiotherapy there after the chemo and the stem cell transplant, but there is always a chance that the tumour could re-grow. If it does I really have no realistic chance of survival. I had to wait for ages for the x-ray results as they lost them on the system - so I was practically catatonic by the time the doctor finally approached with them.

I've also had a blood test to see if I have any evidence of tumour growth in my body elsewhere. Those results I'll get on Wednesday - another trip to the hospital! If they indicate bad things then I'll have a CT scan.

This worry is all intolerable and literally impossible to deal with - I'm still breathing because I am. If it was possible to expire through worry and stress I would have expired today.

Friday, 27 November 2009

It's Not Working

I've made a decision - if I'm still feeling this anxious and worried about my various aches and pains on Monday, then I'll do the brave thing and go into hospital to get checked out. The problem is of course that 'getting checked out' means x-rays which can be done pretty much immediately but unless I'm lucky I'll have to wait for a couple of days for a CT scan. The stress pours over into the whole week and I haven't got time for it what with all the everyday stuff which continues whatever. I was going to go today but I'm going to give things a chance to settle down. I'm not even going to describe again how all this makes me feel. I only hope you can't imagine. Suffice to say one of my nagging pains is in my chest - pretty much where I think the scar tissue is left from my tumour. And if the cancer has returned there, I have less than a 10% chance of survival.

Hopefully the weekend will provide some relief and I'll start feeling better, hopefully this is one of those innocuous pains we all get. Hopefully.

Thursday, 26 November 2009

Today

Thanks for your lovely comments. I'm trying to ignore all scary things today and do things which comfort me - even if they're fattening or lazy or brain-dead (watching Jeremy Kyle with OK Magazine next to me is something I'm hesitating to admit that might be happening!!).

I'm going to my writing course later even though I don't feel great. I think that the writing I'm doing for it, which I'm hoping to turn into something more substantial is shaking me up quite a bit as memories and people come to the surface in new ways. I know I've already mentioned the Blake Morrison book (which we're reading on the course along-side our writing), but again I have to say how much it has moved me and made me think about my own father's death 10 years ago as well as my own unfolding struggle.

So far the course has been far more inspirational, challenging and illuminating than I had imagined. I think I'll be using material from the classes long after they're over.

Wednesday, 25 November 2009

Scared

I don't feel good today. I feel worried and anxious about how I'm feeling physically and overwhelmed at the gulf between how I feel and what I do everyday. Same old, same old - but dropping off the kids today and taking the baby to playgroup just felt wierd. I felt entirely isolated from the other parents in the playground. It's too painful to be with the baby today and realise how little she is and how far I have to go to see her grow up. I'm not even a year in remission and if it comes back I'm pretty much done for. Today I don't feel positive I just feel terrified.

Monday, 23 November 2009

Memory 1

1981

I’m breathing hard, almost panting as I walk quickly away from the school bus. No-one really notices. My brother has disappeared into his junior school without a backward glance and the driver is looking impassively ahead as more kids file on bound for the secondary school in the nearest town. And that’s where I should be heading too. But I’m not. I’m getting away as fast as I can before I’m carried, screaming inside towards that place.

This isn’t the first time I’ve tried to escape school. I’ve been doing it on and off since I was four and my dad and teacher had to chase me around the car – ‘I’ll get out, but I won’t go in…’ Now I’m in my first year at our local comprehensive school, I’m eleven and while I may be older, the primal fear feels just the same.

The walk home is about two miles. I’m too innocent or not brave enough to bunk off and hide somewhere else for the day – I’m scared of getting into trouble at school and petrified of the attention that would bring me. I just want to go home to my mum and dad – who’ll be there with my little sister. I think I just want to be safe.

The school is enormous. Huge and terrifying it contains hordes of people who are able to cope and understand what is expected of them. They have friends, know what to do at lunchtime and don’t appear to have a lump of anxiety inside them weighing them down. My father – always patient and increasingly baffled– sits on my bed in the evening and tries to find out what is so difficult about being at school. I am incoherent, unable to describe as I can now that memory allows me to be incoherent, the smell, the timetables, the new books and new bags, the teachers and the vastness of it all – a jumble of sensations which feel overwhelmingly impossible to manage. I’m a clever girl – good at all my subjects, able easily to shine academically, but not nearly so able to feel part of the crowd, not able to shine socially. Every day I feel clumsy, anxious and inept and close to tears and the time drags heavy and long.

So finally I arrive home feeling sheepish and tearful and I’m faced with my exasperated mother not quite as patient as my father but just as worried about me. And I’m allowed to shelter briefly before I’m driven back to school in time for the second lesson of the day. The desperation I feel is palpable and fills the car as I’m driven towards the horror.

It seems, as a child, my perplexing lack of self esteem filters into all new experiences I want to take on or have to take on. I find life quite difficult despite having the trappings of a reasonably idyllic childhood. At least, I have parents who appeared to love each other most of the time, a younger brother and sister who I played with a and fought with in pretty much equal amounts, a lovely house in the country (rented not owned for a long while: my parents were eccentric and fairly penniless for much of my early childhood at least) and plenty of cats and dogs. My dad was quite disabled it is true, and my mum carried with her some of the baggage of her German-Jewish refugee past – but home was a safe and happy place for me, somehow it was the outside world which was not.

Now I look sadly back at that girl, climbing the lane out of the village. I don’t really recognise her now, but I can feel her little shadow buried deeply inside myself and I would like to be able to console her just, I suppose, as my parents tried to comfort her all those years ago.

Saturday, 21 November 2009

Writing Memories

Doing this memoir writing course has really made me think about lots of things in my life - not just things that have happened recently. As part of the reading list I am reading Blake Morrison's 'When Did You Last See Your Father?' - I've not read it before and am absolutely captivated by it. The best memoirs seem to be able to effortlessly move between a child and an adult voice and weave them into something which gives a sense of the complete person.

In particular it has made me think a lot again about my father's death 10 years ago - I feel I have stuff to write and I feel as if it kind of needs to write itself. Time as always is the problem. I really wanted nothing else but to sit down this morning and write what was in my mind but the demands of the kids meant that I haven't been able to stop all day - and this is the first time all day (and now it's the evening) I've been able to take any time at all. One reads of writers who've written fantastic novels in the evenings when their children are in bed - I don't know how they did it, I suppose they're extremely motivated and disciplined.

I'm shy to tell people that I'm writing a book - it seems too presumptious and I feel silly, but also I do think I need to be a bit more upfront about it in order to feel serious about it myself. But you know what? I've studied literature long enough, taught it for long enough and have read non-stop since the age of 3 - maybe just maybe I could write as well. It's the only thing I've ever really wanted to do and that's the truth.

Thursday, 19 November 2009

Speed Reading

Can only take a moment today to write my post as I have almost a complete - although short!! - book to read for my course tonight. Talk about leaving things to the last minute. Sleep Hattie sleep!!

Tuesday, 17 November 2009

Night Terrors

I had such a bad night last night. I lay awake - my eyes having inexplicably sprung open as if the alarm clock was ringing at 12.45 am. And I could not get back to sleep. I was uncomfortable and hot - I've stopped my HRT for a while as my hormones seemed a bit healthier, but I'm still getting pretty awful hot flushes, about every 20 mins actually. The doctors say it's because my body was plunged into such sudden menopause that I'm experiencing such dramatic symptoms. The HRT which I've been on for the past year helped with that but I've been keen to try to cope without it as I don't really want to take anything regularly which is associated with dramatic side-effects: I've had quite enough of dramatic health issues to last me a (long) lifetime. However, without it I am subjected to these waves of heat which feel as if they come from my middle and wash over me. It's an unbelievably unpleasant feeling. So at night I'm always at least half awake to push the covers off - then I sleep again and of course get cold which half wakes me again, so I pull them over me again. This makes not for restful sleep!!

And last night I was fully awake..... convincing myself that my stomach ache was certainly the cancer returning. I tossed and turned with flashbacks of awful times in hospital torturing me. I considered tiptoeing downstairs and making some tea and reading but couldn't quite be bothered, so I lay and tossed and turned some more. As you'll know or can imagine, being awake when your three small children are asleep runs contrary to nature for any mother. They're asleep!!! Why the hell are you awake?!!!!

I did go to sleep in the end but, waking to the dulcet tones of the baby at 6am, I felt a little delicate to say the least. And speaking to my brother this morning, he reminded me that I've just thrown off swine flu in the best part of a week without succumbing to pneumonia or bronchitis or any other horrible side-effect which people in my 'high-risk category' might be prone to. It helps to think that my immune system can't be in too bad a shape and it doesn't seem logical to assume that a body which is currently facing a reappearance of cancer could recover from other illnesses so easily.

But it's always this unknown which I live with, and the terror gets me in the middle of the night. I have a CT scan in mid-January and the thought of it is hovering over me like an inescapable black cloud. Will I still be here next Christmas. I bloody hope so and bloody plan to be but really I feel so helpless - there's not much I can do to influence the outcome of this whole story. I'm glad I can't flick through to the end of this tale I'm writing - what a petrifying idea.

Monday, 16 November 2009

Headache

Oh Oh Oh ..... I have a headache and I can't write.....

Sunday, 15 November 2009

Another of Those Weekends!

Phew - why do weekends seem more exhausting than the weekdays? Ed's party was crazy - I'm not sure why I thought that Roger and I could manage 10 over-excited kids. Suffice to say the two-and-a-half hours passed very, very slowly although very, very noisily indeed. A big glass of wine was consumed once the kids were in bed. And Ed had a lovely time so I guess that's all that really matters. Thank heavens he only has one birthday a year.

And today Martha and I took Ed to his riding lesson and then we went to the supermarket to do a mammoth week's worth of shopping. Came home, unpacked the shopping, made the kids lunch, chased the toddling baby around while the others cycled outside, cooked a big Sunday meal for the evening, bathed the kids, washed and dried hair and now still have a pile of school uniforms and shirts to iron and packed lunches to make before I can crawl exhausted into bed. And I don't think Ed has stopped talking the whole weekend. I know, I know - it's nothing amazing or unusual - we all do it, but it's so bloody tiring. I'm not wishing time away, I'm not - really!!! - but I can see how much easier things might be when the kids are a bit older and a bit more self sufficient. Honestly - I feel as if I've run a marathon today, and maybe it'd feel a bit easier if there was just a small bit of space available in the day for me to enjoy on my own behalf. Perhaps I'm just too old - I wish I'd had my kids in my twenties. Having three such small ones (6, 4 and 18 months) and being 40 is rather exhausting. And I guess there's all the health stuff I'm battling with. Anyhow, I'm feeling much better - swine flu is behind me now and I'm feeling quite smug about it. No more swine flu for me!! Unless it mutates of course!!!!

My plan tomorrow is to write, write, write while the kids are at school and the baby sleeps. Am I the only person who sometimes drops her kids off at school with a small sigh of relief?

Friday, 13 November 2009

Writing and Blogging

I went to my writing class last night - and I'm really pleased I went. It was surprisingly tough but really quite inspirational, memoir writing taught by a Malwaian poet and author called Jack Mpanjie. I forgot what studying is like - I have done quite a bit in my time: my degree in English Literature, my Masters in American Literature and my teaching qualifications as well as a couple of other post-graduate courses - but I haven't done any for 5 years, and I think it showed. Along with working on our own writing, we have a reading list of other people's memoirs to read and discuss - and the first one has to be read by next Thursday. The others in the class are older and don't have small children - I really don't want to use the kids as an excuse but it is going to be difficult to manage everything. I'm determined to manage though if I can. How I fondly remember my student days when I could read all day if I liked - and spend all evening in the pub if I liked too!! But it was great to be back in a university environment even if I'm only there as a 'pretend' student for a short time. The other great thing was that I left the kids at 4.30 before their tea and got back after they were in bed - the break from the usual evening routine was lovely in itself.

We were discussing the importance of 'the reader' when writing a memoir. The sense that writing a memoir is often a confessional - and it made me consider aspects of writing a blog which are quite unique really to the form it takes. Obviously the reader is very important to someone who blogs - in that way it is very different from writing a diary for example. One is very aware of who might be reading the blog, and as one collects followers and builds up a picture of who they are from their blogs and comments, I think this can have both a positive and negative impact on the writing. Blogs are confessional, but I know that at times I've had to struggle to keep my blog true to what I want to write, rather than write what I think my readers might expect or approve of, or to write more in the style of 'successful' others. And despite my best efforts I do always look to see if I have new followers and I do sometimes wonder why mine seem stuck at 18 while others have literally hundreds of followers. And that can be dispiriting. I guess one of the most positive aspects of blogging is the very strong sense of the reader but that is also one of the most negative aspects of blogging too.

Anyhow - I've got some ideas for my writing and I'm excited to see where they'll take me. If I can be strict with myself and take time to actually sit down and regularly write, maybe for the first time I might get somewhere.

Finally on a different note - it's Ed's birthday party tomorrow.... In our house.... with party games.... and a party tea..... Aaaargh!! I've bravely - or crazily - told the parents to leave their children so it's just my husband and I fielding and entertaining!! I may be a shadow of my former self by tomorrow evening - another pizza and wine and X-Factor evening beckons I think, even though I've actually decided I hate X-Factor and am deeply bored by it. I can never resist the ridiculous temptation - it's kind of comforting, I think.

Wednesday, 11 November 2009

Writer's Block Already??

I'm starting my writing course tomorrow and I'm feeling a bit scared. Quite apart from trying to decide whether I'm feeling up to going - the doctor says I'm no longer infectious although I'm still feeling far from well. But, I've meant to sign up for these courses for ages and I feel that I would be chickening out - nothing like finding out that you cannot write at all.

And I am feeling quite stuck at the moment - in this blog, in my writing, in everything really. Obviously not being well contributes to this feeling. It's hard to explain but I really think that the past 18 months have affected me in so many ways really - and not feeling well affects me fundementally. I have really been waiting for 18 months to start my life again and I feel as if I keep being thwarted by my blasted health or lack of it. And when I feel unwell I am kind of plunged back to the worst of my frustrations all over again. My writing is becoming very important to me - I don't want to shelve my ambitions in that direction any longer, but this stuck feeling is not a good feeling at all.

Oh - and I've discovered that it's only 6 weeks until Christmas! I feel quite stressed at all I haven't done and have to do and am amazed at how many people in the school playground have completely finished their shopping. Maybe it's just a Northern thing - but I'm a good southern girl at heart and I'm used to not thinking about Christmas until maybe a week before!! But with a burgeoning family, new nephews arriving at least once a year - I think I'm going to have to be more organised, especially as I want to do as much as possible online. Certainly I can't face trawling the shops clueless and hot - I always get so hot when I shop....

I love Christmas though - and it seems very important to make it warm and happy for us all, especially in these first years after my diagnosis when inevitably thoughts turn to Christmases future, and those unbearable unknowns loom large.

Tuesday, 10 November 2009

Swine Flu

Well, it's official - I have swine flu! I got the results yesterday. At least that explains why I'm feeling so shockingly awful. The poor baby must have had it too - she's only just better now really.

Obviously I'm a bit concerned - my immune system is none too great and my lungs still have some damage from the radiotherapy. But I'm not getting any worse although I'm not getting any better either so I guess so long as nothing changes for the bad I'm doing ok. Not really what one would ask for on top of the year I've had. I feel like going away for a long and luxurious holiday...at least when I feel better. At the moment I wouldn't be able to summon up the energy to pack. Luckily I have nothing booked!! Am I sounding delerious? I probably shouldn't be let loose with a keyboard in my state.

I'll post again something rather more descriptive, scintillating and poetic when I'm feeling better.

Sunday, 8 November 2009

Home Again

Sorry - I've been absent from the blog for the past few days.

We travelled home on Thursday - Ed's 6th birthday - and I have just been feeling awful since then. Through gritted teeth I made Ed his cake yesterday and we went to my mum's for the weekend where we 'enjoyed' a very wet bonfire and fireworks. Ed rode his new bike all today but now has had to go off to the hospital with his dad to have some treatment for a bleed in the back of his knee - poor boy! And I'm still feeling rubbish - I've had a headache for about a week now, however the baby's still not great either so I've managed to convince myself that the way I feel is probably some kind of bug rather than the cancer reappearing.

I think I've given up on the 50,000 words in November. There's no point in pressurising myself to meet targets which given what else I have to manage and achieve I'm clearly destined to fail. However, I've decided to be serious about my writing and to encourage myself to move ahead with some ideas which have been rattling around for a while. And I'm starting a creative writing course this Thursday evening for six weeks which is taught at the university here in Newcastle. I've been wanting to sign on for these short-courses for a while now, but now that I'm about to start it I feel quite nervous. Anyhow I'm planning to feel better by then at the very least so here's hoping!

Wednesday, 4 November 2009

Heading Home

Well, this is the first bit of peace I've had since we came up here to Scotland last Monday. We're still here - had been planning to leave today but I'm still feeling really rotten and have decided to leave the long drive home for one more day.

My mum, sister and baby nephew are here too and they've just taken all the kids out for a walk - so I have the house, temporarily, to myself. Lovely!

I'm concerned about how I'm feeling. My lungs had quite severe radiotherapy damage and now my whole chest doesn't feel too great. My consultant has said that I will be prone to chest infections and certainly I feel a whole load of pain there at the moment.

I'm so fed up with feeling ill - which I've spent the best part of 18 months doing as I try to sort out my flagging immune system. But it's tiring and depressing and always in the background is the nagging worry that if I'm catching all this stuff, how is my immune system going to recognise and fight off the cancer should it make a reappearance.

It's obvious of course but feeling well and free of niggling irritating illnesses makes me feel much more positive about staying in remission. It's kind of hard to be positive when I'm shivering in bed with hot-water bottles and much easier when I'm walking or cycling or at the dreaded gym. And always not far from the surface lurks the conversation I had with the consultant. 10-15% chance of survival should the cancer reappear sounds ever worse to me.

Being surrounded by noise and family blots some of that terror out and I don't verbalise my fears to people around me at least not nearly as often as the fear flashes through me - but strangely I've also noticed that the more people I'm with in the day, the worse the anxiety is at night when all is quiet and the silence works to let those terrors in. I'm better if I acknowledge something in the day or I'm often in trouble at night.

It's Ed's 6th birthday tomorrow - and we'll spend most of it in the car. But we've various treats planned along the way and he'll have a new bike to come home to which can't be bad. Being born on Bonfire Night is pretty exciting - fireworks going off all over the city and bonfire celebrations at the weekend along with chocolate cake. And another tea-party next weekend with his friends from school. As can be imagined, excitement levels are running pretty high today. I'm looking forward to get home too - to get the kids back to school and to get on with things.

And the writing I hear you ask? Am I on target? Short answer - No!!

Sunday, 1 November 2009

Writing

Oh - it's almost the end of the 1st November and I haven't written my 1800 words. I can't - I'm writing this post and I've just put the kids to bed. Now I have the baby's bug and am feeling grotty and I'm still up in Scotland with half the family and all the cousins.

My husband left this morning to go back to work and I feel a bit weak at the prospect at having the kids on my own for the next few days, plus driving them down en masse on Wednesday.

See - one day in and I'm already behind schedule on the writing front. I knew that would happen. Can I double up tomorrow? I doubt it.

Friday, 30 October 2009

Writing

The baby's ill! And she cried ALL last night. Because all the family - cousins, aunts, uncles - are squashed into this house, she is sharing our room with us. So we got absolutely no sleep at all. The doctor in the tiny village near us said she had a horrible virus. Her temperature is really high - quite scary really - and mine is none too great after lack of sleep and lots of family!!

I cycled further yesterday - very pleased with myself - but today had to spend the day languishing with the baby sleeping on me. Quite cuddly but not really conducive to meeting my new cycling target.

I've signed on to National Novel Writing Month - I have to write 50,000 words in November! Hmmm. About 1800 words a day. That sounds entirely feasible what with three small kids, fretting to do and the blog to write. And we're in Scotland till November 4th. So that's 4 days I can't see much writing getting done. But maybe I'll do it - sounds like a recipe for disappointment though.

Wednesday, 28 October 2009

Fresh Air and Kids

Am wanting to write poetic thoughts inspired by the fantastic scenery but am just so exceptionally exhausted! Think it must be the fresh air - hope it's the fresh air.

I did ride my bike today and shocked myself at how unfit I am. I always overestimate what I can do and then get disappointed when I can't match up. I know that I need to remember that up until recently I could do very little and that my body has been through such a lot. But it is so hard not to be impatient, and also very hard not to push myself until I really feel awful just to prove that I'm back to normal. However, I did really really enjoy what I did manage to do - so there's a start.

The kids got up at a much more civilised time this morning - thank god - and we had a good day. Bike riding in the morning (will the kids learn to ride without stabilisers before they're 16?) and a lovely walk on a deserted beach in the afternoon. The baby wore her new very expensive waterproof, cosy all-in-one and her new little boots and toddled around looking adorable. And I forgot the camera! She kept losing her balance and literally falling forward on to the top of her head - this sounds upsetting but she was very happy at the plan. I hope she will repeat this trick so I can capture it before she grows out of it.

We've been coming to this beach for years - with increasing numbers of bundled up small children. And we have any number of photos in which various kids, in various moods, frolic in various ways in the sand. But we're not tired of it yet. No more small kids to add to our clan now but hopefully more nephews and nieces. I have a brother and a sister and I already have three lovely nephews. All the cousins, including our three, are under 6 - and all are coming up to the Highlands this weekend as is my mother. It's going to be a full and lively house that's for sure. But that is what I love, even if no-one quite gets how tired I still feel.

Tuesday, 27 October 2009

Here

Oh it's lovely up here. We're pretty much in the middle of nowhere which is just what I needed and it's really good just to spend time together without all the everyday pressures. That said, of course there's still very early waking - clocks going back haven't helped at all, and the endless endless providing of food. And it's been pouring all day - but even the rain and low cloud can't obscure the fabulous autumn colours. You forget that the heather changes colour as well - it's not until one's driving through a sea of orange that you realise what an extraordinary effect these autumnal hues have. Its very good for the soul.

I haven't ridden my bike yet - too wet. But tomorrow I'm hoping for 7am waking - that's not unreasonable surely? - and a beautiful day so that we can cycle around breathing in the Highland air. That's got to be good for me.

Saturday, 24 October 2009

Scotland by Bike

We're off to Scotland on Monday. We had intended to go tomorrow but I'm feeling pretty wasted and just can't get the packing done without staying up half the night which just isn't an option tonight.

So instead, our Saturday night is scarily like last week's!! Wine, X-Factor and good food - although I think it was pizza last week!

And - I bought a bike today. I had promised myself one for my 40th back in May and really wasn't up to riding one. But suddenly the urge overtook me and off we went to the bike shop. We're taking it up to the Highlands with us where I can re-visit my cycling skills without the whole city laughing at me. My bike's blue and my new helmet's blue - and I can't wait to ride it. All this feels very good. Hooray.

Friday, 23 October 2009

Special Arm Movements

The baby and I have been dancing. She wobbled around the room nodding her head and doing her special dancing arm action. This action tells the world she's dancing in case they're not sure! She does her special arm movement when she hears a siren, music on the radio, chimes on the clock and even today in the lift as it ground between floors. So you have to imagine a much magnified arm movement when she is actually in a room full of dancing babies! When the music slowed and everyone lay down on pieces of material to be pulled around by their parents, she lay with such a beautiful expression on her face looking up at me as I tugged her along. I guess it was because I'd had such a tough week but I was transported for a moment back to looking at her tiny newborn body in the incubator - and I couldn't believe how far we'd come. Onwards... Onwards....

Thursday, 22 October 2009

Hospital

Yesterday was tough. I did see my consultant and I did ask her all the terrible the questions regarding what my prognosis would be, and what they would do should the cancer reappear. And the answers were as horrible as the questions really. Basically I would have, at best, a 10-15% chance of surviving should it return and less should it return in the original place where it occurred in my chest, because I couldn't have any more radiotherapy to that area. I'd have another bout of hospilisation and chemotherapy - and I wouldn't fancy fighting that battle with such reduced chances of survival. It was horrendous enough last time when the chances of achieving remission were reasonable.

Even walking in to the hospital is an enormously stressful experience. The outpatients Oncology department is clean and bright - in a brand new building - but it only ever feels a dangerous and frightening place to be. I can feel my body tensing as I park the car. And all the awful memories flood back. There are people waiting to see the doctors in varying stages of illness or recovery - some look truly terrible, bald and wasted - as I know I looked in the past. Some look well, and some one greets remembering conversations had while hooked up to drips or blood transfusions. And most a lot older than me which can make me bitter if I don't collect myself. Even the Macmillan Cancer shop selling headscarfs makes me feel truly unwell. Anyhow - I wore my bald head without shame, never covering it up unless I was cold.

So, I have to stay well that's for sure and bloody stay in remission until the danger's passed. Today, I feel sad and very very tired. It's a strange experience hearing those brutal things about oneself and then stopping off at the supermarket before picking up the kids from school!! Sometimes I find my life a confusing and exhausting place to be.

I have a scan booked for mid-January which marks a year since I finished treatment. And frankly of course I'm terrified. The poignancy of all the Christmas and New Year celebrations, Nativity plays at the kids' school etc, all hold that awful echo of the previous Christmas and the hope towards the next one. I'm organising Ed's 6th birthday party at the moment - and last night I caught myself casually thinking that at least I'd managed to reach that goal-post. And for a while it wasn't certain that I'd see his 5th birthday let alone his 6th.

There we go then. I'm not sure what to make of anything. All I can do is to keep on from day to day, ignoring the wierd twinges in my back which I tell myself everyone gets, knowing that if those twinges are sinister I'll know about it soon enough. I am slowly learning not to panic about my body - to give myself time to see if something potentially worrying fixes itself before I rush off to the hospital. But of course sometimes the anxiety is overwhelming nevertheless. I'm keeping on with those smoothies though......

Tuesday, 20 October 2009

I Think You Have to Assume You Could Get Pregnant!

These words were spoken yesterday to me by my doctor. And I never thought I'd hear them again.

Today's news is that my hormone levels seem to be moving away from menopausal towards something more appropriate for my age!! Amazing - all the doctors are surprised which is actually an understatement. They all told me categorically that because of my age and the type of chemotherapy I had, I would definitely go into early menopause. And that would be that. And I really did - from August last year I've had very low hormone levels and terribly strong menopausal symptoms.

But now miraculously for me there seem to be some positive changes in the right direction. It may be that things never resume their old workings but it feels good just to even be able to imagine that I might not need to continue living with this lasting legacy of what happened. And for me, this aspect of my continuing survival - the price I've had to pay to be well is a really heavy one. Yes, I had my three children, yes I was fortunate that I had had them when the cancer diagnosis hit and yes, my god, I met women my age and younger who had cancer and hadn't had kids. People who mean well say endlessly to me that I'm lucky to be in remission and that I'm lucky to have my family. When I'm feeling positive I agree. When I'm feeling negative I agree too but want to explode inside. Because sometimes I really know I haven't been lucky and I don't feel lucky compared to my friends and the people I see in the playground who, whatever else is going on in their lives - and which goes on in mine uninterrupted too, blithely assume they'll see their toddlers start school. Of course there are people worse off than me but that does not always comfort however much it should. To lose my fertility and all the connotations of youth associated with it has been an enormous blow to me and part of what has been hard about facing my future. All this and my 40th birthday. It's tough to look in the mirror and see someone with mad short curly hair when it had been long and straight, with body scarred from treatments, not even able to function in the way it had only a year previously.

We're not planning another baby - I very much doubt we'd have had another should none of this happened. And now I don't think it would be safe or sensible to put my body through such stress. But it feels amazing to think that I maybe could! Even in theory. Now I can daydream when the broodiness takes over and the baby keeps on growing! That makes me feel a different person. That makes me feel more like the old me.

Anyhow - it might just be good news. Time will tell. I'm convinced it's the smoothies I have every day. And I'm so not a mad, fiddly, crazy food-obsessive. I feel a bit evangelical about them though and can see the docs looking very sceptical when I cite the smoothies as the reason why what seems almost impossible has happened. Blueberries, banana, rasberries, honey, yoghurt, spirulina, omega 3, 6 and 9 and herbs from my fantastic herbalist in Edinburgh. That's my recipe for feeling good and restoring the body. This time a year ago I was in a bad way. Now I'm ok - tomorrow's clinic appointment notwithstanding. We'll see.

Monday, 19 October 2009

Swine, Chicken and Jack Daniels

Ed is ill today. Dreaded swine flu?? I don't know... he certainly shows some of the symptoms. I think there's quite a few off with it at his school. I'm worried about him and to be honest I'm worried about me too. I'm meant to be getting the vaccine when it arrives, but I have a feeling I'll already have the blasted thing by then. I've quite considerable damage to my lungs from the radiotherapy and my immune system's none too great. I'm not really worried but I would rather not have another concern. We're off on Saturday for a couple of weeks to Scotland which I'm really looking forward to - it definitely helps my state of mind to be physically far away from the doctors and the hospital at least from time to time - and I don't want our plans scuppered at the last moment by anyone being ill in the family.

We had quite a hassly weekend in the end. The kids were scratchy - probably sickening for whatever Ed has and crazily my husband and I tried to do some of the jobs in the house which needed doing. Just small stuff, nothing major. However we came to the conclusion, as we have many times before but we just never learn, that one can get absolutely nothing done with small children around. Changing a lightbulb would be an achievement! If it wasn't the two older ones fighting it was the baby - seriously toddling now - marching around the house pulling things out of cupboards, emptying pots of pencils.... you get the picture. Ed did have his riding lesson, Martha did go to her friend's party, I did cook a very excellent chicken cacciatore, but we didn't manage to fix the kids' bikes for the holiday or choose paint colours for our loft. And some shouting was done.

My appointment with the consultant is on Wednesday - I feel very stressed about it but think I will dive in there and ask her for more details about what might happen should my next scan show something it shouldn't. I'm doing some deep breathing - but sometimes I wish that a packet of cigarettes and a bottle of Jack Daniels were considered healthy coping strategies. Ho hum...

Saturday, 17 October 2009

Chilling...

Kids are in bed and I have a glass of wine and am about to eat pizza. I'm ready to watch X-Factor - I know, I know, what can I say? Probably best not to try to defend myself......

Friday, 16 October 2009

Today

It's a beautiful autumn day today. I can smell the woodsmoke from the neighbour's woodburning stove and am excited to get ours. Even in the city, an autumn day can still lead me to think of stubble fields, hay bales and darker nights. Cliches, maybe, but not less powerful for that. I'm pleased to be alive today although I feel rotten - I want to gather my family together this evening. At the moment they're scattered at work and at school - just the baby and myself are here in the house. I'm pleased it's Friday, I'm pleased we can all be together for a couple of days without outside demands. I've had a hard week this week - my worries have been consuming at times. Next week I have my scary hospital appointment. So this weekend we're going to go to ground a bit I think. I'm planning to cook - probably not go to the gym and spend a couple of evenings with my husband who I miss through the week as we operate in our separate spheres. Yup, just sometimes I think what happened to me is teaching me to slow down and appreciate what I have in the now. Worrying is so exhausting and unproductive. Easy to say, though - and I'm clearly a slow learner in this department.

Thursday, 15 October 2009

Hattie and I

Today I'm feeling sad that my last pregnancy didn't go the way it should have done. Don't get me wrong, I know I'm lucky to have Hattie here well and healthy, a toddling almost-18 month old as adored and happy as the others were. But sometimes that doesn't stop me wishing things had been different for me and her. I'm feeling broody I guess.

She would always have been my last baby anyhow - but now we can't have any more, thanks to the devastating effects of the chemotherapy. And it was really tough when she was born. At 32 weeks she was whisked into Special Care - I barely had time to glance at her. After spending hours in recovery my bed was wheeled past her incubator and I could see her but not touch her. I couldn't breastfeed because I was starting chemotherapy immediately and the weeks after her birth while she was still in hospital and I was in and out are just a blur.

But we were so separate all the time. The other two had not left my side from the moment they were born. I breastfed them and did everything for them. But with Hattie it was very very different. Even after she came out of hospital, I was tired and sick and unable to be the mother I had wanted and expected to be. I was still in hospital for periods of time, and last October when I was in for 3 weeks, I barely saw her because I was so ill. I remember crying and hating everyone who had looked after her for me because they knew her and I felt as if I didn't.

All this was so hard but at the time I got through it pretty much one day at a time. I think it's now that I'm really mourning for my lost last months of pregnancy, for the birth I wasn't even able to attempt, for the feeding I wasn't able to do and for the presence for her I wasn't able to be. And I can't do it again. That hurts. That's a pretty brutal end to my fertility.

Amazingly really, considering we were so separate, I never had a moment's difficulty loving her. I adore her wholeheartedly - there have been times when I've questioned how connected she's been to me in the middle of those times, but I've never questioned my connection to her. We couldn't help being separated when we should have been together - but that doesn't soothe my sadness nevertheless.

What I am sure about though is that the implications of my diagnosis - not only what it was but also coming when it did - continue to have reverberations up to the present in all sorts of unexpected ways.

Wednesday, 14 October 2009

Pyjamas

I bought lots and lots of pyjamas today. I LOVE pyjamas - I have a real thing about them. They were pyjamas for the kids as I have a shameful amount of my own and couldn't justify buying myself any more. But luckily I discovered that I enjoyed the kids pyjamas almost as much as my own. Hooray! I can live vicariously through my children wearing their pyjamas.

Tuesday, 13 October 2009

Keeping On

Still here - ha, ha!! Feeling rotten but think it's probably just something insignificant - half the children in the kids' classes are off so I've decided to settle for that. We're off to Scotland in a couple of weeks for the half-term holiday. I'm really, really looking forward to it and just focussing on feeling well for that. It's more than a tonic going up to the Highlands - just so beautiful at this time of the year - the colours are fabulous and the air so cold and clean that I can't fail to feel well.

Off to parent-teacher consultations this evening - it'll be lovely to see how Martha's settled at school and how Ed is managing Year One with all its rigours! Here's hoping they're doing ok - they certainly rush happily in every morning which must count for something.

Monday, 12 October 2009

Worry

I'm worried it's come back you see. Not with huge amounts of evidence to justify the terror, but just enough to produce unbearable anxiety. I've felt pretty rubbish for a few days now - maybe just a bug, maybe not......

A Snippet of What I Wrote to the Kids back in November 2008

I wasn’t going to write anything about this whole experience, until it occurred to me that if I did die you kids might want to read something from me. And if I don’t die – and I have no intentions in that area – it might still be something you might want to read some day. So this is for the three of you.

You are all so young. As I write this, Ed, my best boy– you are just 5, Martha darling, you are 3 and my beautiful baby Hattie, you are a very big girl at 7 months!

It is beyond unbearable for me, beyond being able to find words to use, to contemplate the fact that I might not see you all grow up and that it is possible that you won’t have many - or any - memories of me, or those that you do have may be sullied with seeing me in the midst of this dreadful illness. I cannot begin to tell you how awful this is, how much I want to wake up out of this horrendous nightmare. Ed and Martha, when you both were babies I knew that my deepest, most profound fear was that something might happen to me and I would no be longer able to be near you. And Hattie, that nightmare began when I was pregnant with you – poor darling.

You can of course ask Dad what happened when – but it is more than possible that he won’t be able to remember the details, you know your own Dad! So maybe I should tell you my version of it. On the subject of your Dad though, I want to say how fantastic he has been in supporting me, how hard he works in trying to look after us all – so I hope, if I’m not around, you are looking after him too and not giving him too many headaches or heartaches. Christ, I hope I’ll be around for those too.

What a strange stage I’m at at the moment! I’m waiting to find out the results of a scan which will tell me if I’m in remission – if the months of very aggressive treatment have worked. How scary is that? By the time you come to read this of course you will know the answers to this and many other unknowns for me, as I sit here. Weird!

I want you to come to know me through this, in case you haven’t been able to get to know me yourselves. And I want to say, my darlings, that I’m so sorry about all of this. I never, never imagined such a thing would happen to me – and that I wouldn’t be there to treasure you three and hold and love my grandchildren. The day after you were born, Eddie, I began to look forward to my grandchildren – I swear it’s true. This is a disaster for me – serious understatement – and a catastrophe for you three too. You should ask Dad, Grandma, Tom and Hannah what I was like of course. And if they have been doing what I asked them to do, you should be growing up, or have grown up, with a sense of me around you. But I wanted to say some stuff – and I’m sure there’ll be more to come – about myself, although quite how you honestly describe yourself to your children I’m not sure.

Some Nights

Some nights
The ticking of the clock punctuates the chaos of my thoughts,
Early hours of the morning the terrors loom large,
A black deep-bottomed lake full of snakes and mess
Panic and struggling, fighting to breathe.

Some nights I know
I would never find peace facing my death,
The children will grab at and suffocate my attempts.

Some nights
The worst could happen
The worst could happen
The worst could happen.

Some nights
The consolations offered are hollow echoes,
And I’m left twisted with anxiety
As usual.

Saturday, 10 October 2009

More Heavy Stuff (just a little) and Rumble with Martha

So, yesterday I did write to my consultant and ask her to be prepared to answer my toughest and most difficult questions regarding my prognosis should my cancer return (see my 'Heavy Stuff' post). I took a deep breath before I wrote that email I can tell you! My next clinic appointment is in a couple of weeks - so either I'll take the cowardly route and decide not to ask, or I'll be brave and I will. I do feel in my heart that I need some answers to prepare myself for the next 6 months but I'm not convinced that I'll have the bottle when it comes to it. In theory I'll be no worse off if I hear with my own ears what I think I already know, but in practice it might feel a little different.

To change the subject entirely - I took my 4 year old daughter dancing this morning. We have a great place near us called Dance City. Martha was doing the 'Rumble' class for 5-6year olds and was feeling very brave as she's young for the class. I'd thought the pre-school class would be too young for her as she's started school (as one of the younger members of her year), but she was a bit wary of my theory! I had to leave her - wasn't allowed to stay - but she was tough too, just like her brother and gave a cool wave. Later I watched through the door as she flew around the room giggling and hula-hooping. A good choice then!

And I had a good time too downstairs in the cafe - ON MY OWN - drinking my cappuccino, reading my book and people-watching. Yup, I'm a world-class people watcher and Dance City is a top spot. Lots of extraordinarily thin women with their hair twisted into elegant pleats, sipping hot water between classes (envious, moi??), and lots and lots of very watchable middle class parents - especially thoughtful and earnest fathers - with broods of small children running around. Ok, Ok I accept - it takes one to know one and all that. But still I had innocent fun observing and surmising until I had to go and fetch my own small child.

Thursday, 8 October 2009

Lovely Boy

I haven't mentioned that our son has haemophilia.

It's a condition which means his blood doesn't clot - he has severe haemophilia so this means he has less than 1% of the clotting factor which most of us have. It's a genetic condition, my dad had it, so I knew that when I was pregnant with my babies - if they were boys - that they would have a 1 in 2 chance of having haemophilia. It's the same probability that my girls are carriers.

All this is kind of serious but also manageable. Ed flies about doing all the things 5 year old boys do with no sense of restraint at all. He can get very painful bleeds into joints and muscles, has horrible looking bruises much of the time and if he bangs his head hard it can be very serious indeed. However, when he does get these injuries there is a now a very effective treatment - thank heavens! When my father was growing up he had no treatment at all and spent large parts of his childhood in bed.

Ed has an IV injection of the missing clotting factor which works well and quickly. Up to recently whenever he has needed treatment I have taken him to our local haemophilia centre and they have given it to him. Recently, however, as Ed has started his second year at school he has started a prophylactic treatment once a week to try to protect him a little in the subsequent days. The factor stays in his system for sometime in diminishing amounts as the days progress. And I am learning to inject him so that eventually I can treat him at home rather than trekking through rush-hour traffic along with the other two kids after school. It also means that staying away from home and going on holiday will also be less stressful.

But, injecting your own child is a strange and tricky business!! I practiced on the endlessly kind and patient nurses initially. Finding a vein and figuring out which direction it travels under the skin seems an art as much as a science. And last week and this week I managed to treat Ed. He's so patient with me. He holds still while I clumsily poke around - and reassures me, tells me I'm just learning, tells me it's ok! I'm stressed before we go (hope I hide that from Ed!) and very proud of myself when I'm successful.

When he was a toddler and needed treatment it was such, such hard work to stay calm. He struggled and sweated and fought and it sometimes took the nurses literally hours to treat him. I'd feel as if I was colluding with them against him as I tried to hold his struggling body still - and he didn't understand and I couldn't explain to him. Today he holds out his arm and bossily reminds me to put the torniquet over his sleeve because it pinches and to clean his arm 'properly'. I am very proud of his open and sunny attitude towards his condition. He is utterly pragmatic about it and this helps us to be pragmatic as well. Amazing.

Tuesday, 6 October 2009

New Boots - Too Big??

I bought some lovely new boots today.

But I wasn't too impressed with the rest of what I saw in the mirror. Am too hungry to diet and I'm worried my immune system would be none too impressed either. But maybe that's just an excuse. I want results fast you see. Gradually losing weight as I rush around more and more after the kids, as I feel better and better would probably do the trick.......eventually. But I'm sick of feeling too big. I am aware though that I'm very pleased to be here to be pondering this issue. But funnily enough that doesn't make it feel less sigfnificant. What a bimbo I am facing life threatening issues and worrying about my weight! Hmmm.

Monday, 5 October 2009

Detritus and Demands

Time, time, time. I haven't got enough of it. Not enough time to read, to do my work, to clean the house, to go to the gym, and most importantly to write - which is becoming more and more of a must for me. The children absorb me, as they should, but the few hours between their bedtime and mine just isn't enough.

I need a sabbatical from all the detritus and demands - chance would be a fine thing hey? If I ran away for a couple of days would anyone notice? Probably not until they were hungry. I'm joking... of course.

Saturday, 3 October 2009

Past, Present, Future

It's a time for looking back and forward for me at the moment.

Exactly this time last year I was going into hospital about to face my super-high dose chemo and my stem cell transplant. This made me the illest I've ever felt. I was about a month away from my last lot of chemo at that point and not feeling too bad - I remember carrying my stuff onto the ward, heavy bags - the lot - without too much bother. I emerged 3 weeks later, literally a shadow of my former self having become very ill indeed with sepsis and colitis while the chemo and the transplant did their thing. I staggered out of the doors of the hospital, almost unable to stand upright enough to wait for the car parked a footstep away. Those three weeks saved my life I know but my god they nearly killed me in the process.

This time a year ago Ed had just started school and life at home was catastrophically complicated as my family struggled to work out how to care for a small baby and a pre-schooler while taking Ed backwards and forwards to school. They took it in turns to visit me and take care of the kids in a kind of rota system which meant horrendous amounts of organisation for everyone. Before I became too ill to know what was happening in those three weeks I was obsessed with knowing who was where doing what. I think I drove everyone crazy but they were all far too generous and loving to tell me that! I remember saying goodbye to the baby the morning I went into hospital as my husband took her to my mother. Just grim.

And now... I feel well. I've seen my daughter start school this year and I'm doing all the school pick-ups and all the shopping, cooking and cleaning just as any mum does.

But I look into to the future - particularly this time next year - with such particular intensity. Will I still be around to sort out uniform for the new school year? Will I be able to look backwards through a year of good health and happiness? Will I be thinking forward with more peace of mind to the next year?

These questions are not just morbid or perverse. They are part of my existence at the moment. I imagine I am following the path of some journey that most people find themselves upon in my situation. I guess if I am still here in 5 years' time I won't still be pondering these inponderables. I very much hope I won't anyhow, because it's all more than a little exhausting that's for sure.

Thursday, 1 October 2009

Lego, Shrieks and Woofing

Feel quite a bit better today. I think it helped to write my post yesterday and sort through my thoughts. So, thanks for reading and thanks for commenting - I was cheered by the support.

So, the poor baby is ill today. Not drastically so, but enough to make her hugely sensitive to any slight perceived or otherwise which might be perpetrated by her brother and sister. The lego figure which today she had decided was as precious as anything else in the house, was clutched to her chest all day. Any attempt to remove it resulted in shrieks of banshee like proportions. It has been prised away from her so she can go to bed and I can sleep without worrying that she's quietly choking upstairs. But it took sleight of hand and impressive distraction techniques, I can tell you! Calpol at the ready tonight I think!

Her 'woofing' like a dog is coming on fantastically though, illness or not. I'm so proud.



Wednesday, 30 September 2009

Heavy Stuff - little bit of doom and gloom (sorry)

Oh, I can't say how pleased I am to read comments and have a some new followers. It's a dispiriting idea to think of my blog floating around in cyber-space with no-one to care for it apart from me. Hooray!!

I'm in a spin today as I try to decide what I can do to help myself through this tough patch I'm experiencing. I can't escape from the numbing anxiety which overtakes me at times throughout every day and twines itself into my dreams at night. I guess one thing is that I don't know what would exactly happen if the cancer returns in terms of actions and any possible further treatment. I know that my prognosis wouldn't be good but I've shied away from a detailed discussion with my consultant because it's all so very very scary. Reaching that place called remission has been as far as I've wanted to travel along this road. I was told by another doctor that it would be 'grim' if it returned. However it has occurred to me that maybe I'd be less haunted if I knew more and assumed less. What does 'grim' exactly mean? Knowledge is power and all that!

Oh but I'd have to be brave to have that conversation - even though I assume the worst should I relapse, hearing the worst from my doctor would be awful. But maybe just maybe I might find some glimmer of comfort from being armed and prepared.

Phew!! Sorry to be so serious. I just didn't bargain for struggling with stuff like this at my age. But who would?? My son asked me today if I could live for another 55 years. I was about to say of course I couldn't but then I realised I COULD actually live another 55 years. I'd be 95 but what the hell? Roll on undignified old age, I'm ready for you - I just hope the kids come to visit me. At least being a threesome, they can share the burden!

Tuesday, 29 September 2009

Woman Around the House

Well, I came over all house-wifely today - a bit of a surprise for all concerned. I decided that I HAD to sort the piles of stuff which had accumulated around our house and which had become mountains of Everestian (!!) proportions as we wait for our loft conversion to be finished. So with the baby flapping around in the middle of the floor, swimming in paper I attacked it all with gusto. Gusto at the beginning which quickly became something less energetic and more bewildered. Recycling and shredding - blocked the shredder, filled the kitchen with bags of paper, magazines, envelopes and junk mail. And now I hope the recycling lorry is coming tomorrow or I need to spend the day carting it all somewhere noble and green!

Also - note to myself. STOP eating biscuits in the evening if I want to revisit svelte pre-cancer, pre-pregnancy body. Gym visits are all very well but I'm going to have to forgo a few pleasures I think for a little while. Diets don't really sit well with my philosophy of life however neither does allowing myself to look like a middle-aged mum when I'm only just 40. There's nothing like a bit of vanity to distract oneself from troubles and woes.

Sunday, 27 September 2009

Hard Work

The kids have just been exhausting this weekend. I love them dearly which goes without saying, but oh my god would I like to have a bit of space at times. Being a parent is so unbelievably difficult at times I think. Ed wakes up at 6.15 every morning and despite threats, cajoling and even trying to appeal to his better nature (ha ha!) he continues to do so, just as he continues to appear in our room and his sister's as well. He wakes her up although having just started school she is exhausted and badly needs to sleep. The noise they both subsequently make, sends me into apoplectic levels of fury - not always dutifully suppressed as a good parent should - and always, always wakes the baby.

By the time it's 10am we've all been awake for what feels like an eternity. Of course that's what you sign up for when you make the curious decision to have three children in the space of 4 and a half years - but if I'd known it'd be this tiring I'd have had my family in my early 20s! Of course that's ridiculous as I didn't meet their dad till I was in my 30s but you know what I mean!!

So despite what more noble people say who have faced a life threatening illness, I do still sweat the small stuff. And what's more I feel guilty more than ever when I do although I can't really imagine how my responses on an everyday level to everyday stuff would or could be different. However I do strive in theory to be more zen-like though - think I might take up meditation, so watch this space.

And while I feel bad for yelling at the kids today, I'm living with so much worry everyday that it's quite overwhelming at times. It's not their fault of course but sometimes their clamour and chaos is exactly what I can't deal with as I wake up after yet another night of terrible, scary dreams in which the worst happens over and over again. I need peace and quiet to soothe my troubled mind and that's not really what kids do! That's why this whole situation continues to be a tragedy for our family long after I seem ok to everyone else. Live with me for a while and you see that I'm not really ok at all.

We did all go to Hadrian's Wall yesterday though. We had a lovely picnic and a fabulous walk and I can honestly say that I felt the legacy of my awful Friday lift while we were walking - mostly I suspect because I was too busy thinking about how completely shattered I was. Think I'd better keep on with those trips to the gym! Impressive hey?!

Friday, 25 September 2009

Moving On?

Spent the day today at a conference supposed to help me to live beyond my cancer diagnosis. For half the day I was irritated and the other half of the day I was in tears. Probably not the intended outcome of the day but there we go.

So we're planning a long walk in the Northumbrian hills tomorrow. Not visited the Tyne Valley? Fabulous countryside and astounding history literally at your fingertips as Hadrian's Wall winds it's way along the hills like the spine of an enormous animal. One of my favourite places on the planet. I reckon connecting with the wall and maybe with those long-ago homesick Roman soldiers - breathing in the pure air of the fells - will help me infinitely more than anyone in a stuffy conference hall could ever do. Enough already!

We need to get the dog we've been planning for when things pick up and I get broody again for the fourth child I can't have. Now's the right time. I'm not at my broodiest yet - I know it's going to get much worse than this but I think a dog is just what we need. This is a new time for me - I'm feeling well and we could all do with such a happy addition to the family. But what kind of dog? This is the source of many happy musings. She has a name already, and she's a she already but will she be a Boxer or a Border Terrier? Or a woolly mongrel we can love anyhow? Whoever she is I can't wait to pack her into the car with all the kids and take her to visit the Romans up on the beautiful moors. All these good things I think will help me to assimilate my experience and find a way back to some kind of inner peace.

Thursday, 24 September 2009

Dreams

Well, today I woke up exhausted. I dreamt last night that the cancer had come back. In the early, early morning with the older kids cuddled into our bed one either side of me, I sleepily and accidentally spoke of my dream. And so began the conversation which, along with the dream, continues to haunt me all morning. My son asked me if last year I had been afraid I was going to die. I replied that I supposed I had been a bit. Major understatement there. I said that I'd been lucky that all the treatment I'd had worked. Yes, he said, but if it comes back again you won't be lucky again. I was amazed at how much he knew - although we've never kept stuff a secret we thought we'd been effectively opaque about the future. And amazed at how courageous he is to put into words such the cataclysmic fear we all feel. My daughter, 18 months younger, just wound her warm arm around me and said that she would keep me safe from the cancer. And you know what? I almost felt she could if I could just suspend time and stay in that moment.

And then we got up, had breakfast and went to school!! Watching the kids disappear through the classroom doors my heart felt heavy for what a burden my small children, only 4 and 5, carry inside themselves as their day unfolds. And today my heart feels heavy for myself too.

Tuesday, 22 September 2009

New School, New Pink Shoes

Of course alongside all the scary heavy stuff is the everyday stuff. Martha started school last week and is now hopping along beside Ed as I walk them into the school playground. The organisational skills it takes to have two kids at school took me a little by surprise. I find it a remarkable strain of intellect and memory to make sure that there are ironed uniforms, packed lunches and returned notes in book-bags on the right days. My thoughts as I'm in the supermarket, making sandwiches, cooking tea or ironing shirts swirl around in a strange soup. I worry about dying, I return to snapshots of the past year, I wonder when and if and how I could go back to work and I wonder how to make my way back to the ordinary and how to find a happy place there. All this in the car between home and school!! And of course there was a time not so long ago when I could not happily assume that I would see Martha's first day at school, let alone the baby's. This is quite a lot for one small brain to cope with really.

And the pink shoes? The baby finally seemed to be doing enough walking to warrant some sort of footwear. So I took her to the shoeshop to be presented with a ghastly array of gender afflicting styles and colours. The only two shoes in stock which would fit Hattie were a terrible boys' mock-trainer or shocking pink leather shoes. Others with not much more to recommend them could be ordered but I wanted them then. So I bought the pink ones! I sort of didn't have a choice but I'm still ashamed. I cannot stand the way little girls are pushed into the pink, sparkly thing. I've never done it with Martha who wears cool jeans, sweatshirts, pinafore dresses and stripy tights and - at the moment- isn't into pink. What are we telling our girls about what it means to be female? Nothing very interesting, empowering or creative that's for sure. But the baby now has bright pink shoes - at least she's too young to know that her mum has no sticking power in the pink shoes or not pink shoes debate which rages through our land!

Saturday, 19 September 2009

My Calamity 2008-9


In April 2008 when I was 31 weeks pregnant with our third baby, I was diagnosed with a very aggressive and rare form of non-Hodgkins Lymphoma. By the time the tumour was found, it was the size of a large grapefruit and sitting next to my lungs and heart. Had I lived long enough to go into labour I would certainly have died as my heart and lungs could not have taken the strain. The baby would also have been in grave danger.

Up until the point I took myself into A and E one Monday tea-time, I’d kind of been carrying on as usual. Granted I was itching all over and had since Christmas, experienced appalling upper back pain. I’d visited osteopaths who proclaimed to be able to see ribs out of place, my midwife who said the itching was hormonal, my GP who listened to my chest when I explained that I was finding it hard to breathe and who said I was tired and should consider a couple of days off work (as an English teacher in a high school), and in desperation an acupuncturist who claimed to be able to sort out my pains. But nothing worked, and in the middle of making tea, taking kids to nursery, marking essays, going to Sainsburys, cleaning the house and being pregnant, I began to wonder if my pain would ever recede. I spent two weeks trying to sleep downstairs on the sofa, sitting up and leaning forward because it was agonising to lie down – even the pressure of a cushion or pillow on my upper back was excruciating. But still – I got up and went to work in the mornings exhausted and stressed because bizarrely it seems now it didn’t really occur to me that there could be something seriously wrong!

I guess the thing was, I had always been so healthy. I’d had three pregnancies from my mid-30s and sailed through the first two with no more than horrendous morning sickness to worry about. I suppose it was just inconceivable to consider that something serious might be happening to me. Actually just once I remember asking my husband, Roger, in the middle of the night if he thought I had cancer. And then I dismissed that thought. Rather unhelpfully, the health professionals whom I had visited also clearly thought it was inconceivable that something serious was amiss.

So, I got to the point one tea-time in late April, 30 weeks pregnant, as I was sorting the kids out when it occurred to me that I really was finding it hard to breathe and that I could feel a rustling, crunchy crackle somewhere in my lung. My back was agony as usual. I phoned Roger, asked him to come back from work because I thought I needed to go to A and E. I vividly remember being very calm, and sitting on the arm of our sofa waiting through the half an hour it took him to get home, trying not to worry the children as I took deep and careful breaths.

He dropped me outside the doors of the hospital with the kids in the back of the car and went home to put them to bed. Inside the A and E department I sat in a cubicle waiting for a doctor to see me. All around I could hear people with sore backs and sprained ankles being patched up and sent home. The doctor who finally appeared was lovely – she listened to my explanation of all that had happened and then listened carefully to my chest. She said she thought she could hear something and thought I should have a chest x-ray - even though I was pregnant. She said that at 30 weeks the baby was fully formed and they would protect it with sheets of lead. I had that x-ray and the nightmare began.

Of course they found something all right! They couldn’t diagnose it from the x-ray, so there followed a week of CT scans and biopsies. Initially they thought it could be lung cancer – I don’t smoke - but I would have to wait for the results of the biopsy. Roger and I were completely stunned – our world was crumbling about us. Thank goodness for my mum who took control at home and made sure the kids were fed and taken care of. I remember being obsessed with the fact that I had no life insurance – we had been about to sort it out, in fact the forms were on the table at home, but we hadn’t done it and now it was too late.

A week later on the Friday, 31 weeks pregnant, I was given the results. Because the type of non-Hodgkins I had was very rare and very aggressive, I would need several rounds of very aggressive in-patient chemotherapy – which would entail receiving chemotherapy on a drip for 36 hours at a time, night and day. I would need a harrowing stem cell transplant and radiotherapy. The treatment would take the best part of a year and the prognosis was uncertain due to the rarity of the cancer. And I had to have the baby on the Monday! It’s impossible to put into words the chaos our lives were thrown into. Arrangements were made for the caesarean, I was given steroid injections to strengthen the baby’s lungs and told to go home for the weekend. Somehow we had to prepare for her arrival, when we hadn’t expected her for another 10 weeks. I was still at work for goodness sake – I hadn’t even started my maternity leave! Of course she would go straight into Special Care we were told and would probably be there until her due date.

The caesarean went well – it was only later we discovered that the surgical team were worried that I might get into difficulties during the procedure, as my heart was under tremendous pressure. I had insisted on a spinal anaesthetic so I would be conscious and able to welcome my new daughter into the world. And funnily enough, despite all that had happened and all that was to happen, I remember the afternoon of her birth as a happy and peaceful time. Roger was sitting next to me, holding my hands – and when she was born and they lifted her over the screen for us to see, I felt as I should have felt, as mothers feel on seeing their newborns. We had been warned that she might not cry as she was so small and that we weren’t to worry, but she was crying loudly and indignantly. She was pronounced perfect, wrapped up and taken away to an incubator in the Special Care Unit.

My chemotherapy started a week after Hattie was born. I shaved my long hair off a couple of days before it started – in the photographs by the incubator with my four year old son Ed and two year old daughter Martha, I look like a sick convict. But I wanted to prepare the kids - and myself – for a mummy with no hair. Hattie went from strength to strength, thank goodness, I endured treatment too appalling to describe, and the family fell freefall into complete chaos. Hattie came out of hospital after my first round of chemotherapy and we found ourselves in the middle of the usual mayhem which a new baby brings – night feeds especially – with me so sick and tired and bald, I couldn’t move off the sofa. I cried for weeks out of sadness that I couldn’t breastfeed, desperation that I couldn’t mother my kids as I wanted and terrible terrible frustration. I refused to stay in bed, constantly trying to do the things I needed to do and failing so miserably through sheer exhaustion. Now and again I’d find the energy to curse and swear more horribly than I’ve ever done before – throwing things around and screaming at Roger or my mum. I felt so angry – still do in fact. Illness is ugly and undignified in my experience.

A year and a bit on – it’s September 2009 – and I have no real idea how we managed. I was bald and sick until January when I finished my radiotherapy and was pronounced in remission. Since then I’ve struggled with one illness after another as my immune system is still so weak – and I have quite extensive damage to my lungs from the radiotherapy. Also I have been literally plunged into early menopause, with all the associated symptoms in heightened glory, as my ovaries have been irrevocably damaged by the chemotherapy. But Hattie’s had her first birthday and I’ve just had my fortieth. I’m getting stronger and less tired, and some days manage to feel optimistic about the future. The doctors have said that if it returns they cannot treat it – so that would pretty much be it for me. That’s very very hard to live with. Daily I look at my kids and wonder if I’ll see them grow up. But… if I can achieve five years in remission than I have beaten it. If I see Hattie start school, I’ll have beaten it. All I can do is hope. And I look at Hattie now walking, babbling and doing what all 16 months old babies do, seemingly unscathed by her traumatic start, and I think it was a miracle that I kept her inside me for so long. Because, while it might have been better for me if they’d found the tumour earlier, it certainly wouldn’t have been better for Harriet. And one year on at least we’re both here. And that’s a start.

Thursday, 17 September 2009


Have decided to write about my experiences - it's all such a muddle and a blur. I've got so much to sort out: from how I coped and cope now with the kids, to how I live my life with this threat to the whole family's well being hanging over us. I'm going to try to blend the story with a current window into my life - maybe then I'll be able to make some sense of it all.