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.

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.

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.

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.

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....

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......

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.

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...

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......

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.