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.

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.

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.

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.

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.

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.

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!!

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.

Headache

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

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?

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.

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.

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.

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!

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!!

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.