The Guardian piece

So! The piece is in today's Family Guardian

I have to confess to feeling a bit worried about it beforehand, especially about the photograph! But it's not too bad, and generally I'm pleased with the piece. It is just possible that I was one of the first customers to visit our local newsagent this morning!

Thanks so much to everyone for your lovely, supportive comments.

Happy New Year and all that stuff

Happy New Year to you all. As usual things have conspired to keep me away from the old blog - so I'm making new resolutions to remedy that. The problem is that after I've worked all day and marked and prepared lessons for the next; in between sorting the kids out, making packed lunches, going to swimming lessons (kids, not me), writing and reading and shopping, cooking and cleaning (phew!) there's not time for much else.

I don't mean to relegate my beloved blog and any readers who may still be out there, to the bottom of the very big teetering pile but the problem is that you're all so quiet compared to the clamour which echoes through the rest of my life.

So.... a catch-up. Christmas came and went in a blur. The kids were hyper - Ed at the age of 8 still waking up at the crack of dawn whenever there's a sniff of excitement and Martha and Hattie swirling through the days filled with everything Christmassy. For me, I guess it was the first Christmas since my cancer diagnosis (3 years ago I was going through radiotherapy)that I didn't wonder with quite such a heavy feeling inside whether that Christmas wouldn't be my last. I suppose I'm beginning to have just a little faith that I may stay alive for a few more years yet. I have an oncolgy appointment on Wednesday - just a check-up, but just walking through the doors of the hospital can make me feel shaky and less than sure about anything.

I read bit over Christmas - Look at Me, by Jennifer Egan which I thought was really interesting and dark, and I've just started Saint Maybe by Anne Tyler to cheer me up about returning to work. I love Anne Tyler for her easy readability and explorations of family relationships. I've read most of her books but gloriously I've missed this one. The problem is that I'm so tired when I get into bed that I fall asleep almost instantly. A least it spins out the pleasure for longer!

I'm also in the middle of applying for child psychotherapy clinical training for next year. Yup - finally I've decided on a career change. The course is scary in it's demands: I have to start regular analysis before I start. That is scary - I'm a little wary of meeting whatever might be lurking in my subconscious. And it's a doctorate which is another scary thing - if I ever had any brain power I think it's disintegrating fast. But it's worth a try. I completed the pre-clinical training while I was pregnant with Ed, and had intended to continue straight on to the clinical training however life (in the shape of two more kids, and cancer) kind of temporarily got in the way. Hattie starts school next year - and now is as good a time as ever to start the training seeing as I have to earn for a long time to come -I'm still hoping to become a full-time person of leisure, but it's not really looking likely any time soon!

Excitingly (although I'm shrinking with horrified anticipation at the same time) I have an article coming out in the Family Guardian this coming Saturday - yes, the 14th January. Read it if you haven't anything more interesting to do which I'm sure that you have. But I did write it which is pleasing. Bit worried (understatement of the decade) about the photo. Hope the beautiful kids eclipse the frazzled and 'seen better days' mother.

Rage Against the Machine

On Thursday I went for a scan on my spine. It was an MMR scan and although ordered by my oncology consultant, I was not too worried as it was meant to be checking out a long-term lower back problem which actually pre-dates the cancer. Not too worried in theory - but in reality any scan makes me sick that something horrendous will be found.

And because I was not worried, I took myself off on my own. My friend was looking after Hattie and the kids were at school. To be honest it didn't really occur to get Rog or my mum to come with me. I've had enough hospital appointments to know what I'm dealing with. Or so I thought.

Walking through the oncology department where I have my check-ups, where I had my radiotherapy; walking behind a nurse who looked after me when I was at my illest during my bone marrow transplant, who didn't recognise me - that was all ok.

It was when I was sitting in the waiting room for the scan that things began not to be ok. In the small, cramped room were people waiting for CT scans and MMR scans. Mostly old people as they always are, needing scans for all sorts of reasons. Chattering and nattering away - seemingly entertained by the novelty of a hospital appointment: for some one can't help but wonder if having something worthy of an appointment is almost an event to celebrate. But opposite me was a woman - younger than me. She had no hair; was thin, pale, crying and was retching as she tried to swallow the liquid which one has to drink for the CT scans. She was hanging onto her boyfriend who was trying to shield her a little and give her some privacy from the prattling around her.

And I knew. I knew how ill she felt. I knew how scared and angry she felt. Because three years ago I had many scans when I too was sitting, holding onto Roger and trying to hide my vomiting. I remember being petrified about the results - my whole life hanging suspended, waiting for the call to tell me what the machine had revealed.

I wanted to say to her that I had been where she was now and that my prognosis had been so terrifyingly poor. I wanted to say, "look at me now!". But of course I didn't. Instead I concentrated on hiding my tears of horror and stared down at the blurred page of my book.

Called into my scan - I burst into tears as the surprised technician sat down to take me through the details of my test.
"Couldn't you find that poor girl somewhere else more private to wait?" I sobbed. "Can't you see how ill and scared she is?"

And then I lay down in the jaws of a machine which resembled a tube as claustrophobic as a coffin. I've only ever had an MMR scan on my leg, so I didn't have to lie right inside. I've had plenty of CT scans which are unpleasant and scary but quick nevertheless.

I hadn't read the information which came with the appointment booking. I hadn't realised that I would be inside this contraption for up to 50 minutes, wearing headphones to try to block out the horrendous clanking, grinding and scraping.

I was pushed into the tube, lying on my back, my nose a few inches from the top, my hands on my stomach holding an emergency buzzer if things became too much, my arms pinned to my side. And the scan began.

I started to cry. Lying alone, deep inside the machine, the tears fell straight down my neck into my hair. I couldn't move my arms to wipe them away.

I think it was a kind of panic attack. I don't do panic attacks. I'm quite a down to earth person by and large. But I had terrible flashbacks in that machine to my radiotherapy. I hadn't thought about the radiotherapy, I don't think, since I finished it. But all of a sudden I could picture the way the little cogs wouuld move and change above me to emit the damaging radiation deep inside my chest.

I tried to calm down, telling myself that apart from anything else if I buzzed for them to take me out, the whole thing would just last for longer - and if I refused to have the scan, there would be that uncertainty and worry at the back of my mind: what if there was something to find after all?

So I summoned up all that I had and took some deep breaths. I closed my eyes and pictured a walk I love step by meticulous step. From time to time I looked up at the top of the inside of the scanner and focused on a tiny dot in the plastic. The roof was so close to my eyes that it was hard for my eyes to focus and the dot kept dividing into two. How many others had done the same thing?

After 20 minutes they pulled me out and injected some contrast dye into my arm. I'd managed to surreptitiously wipe away the tears by then. I wasn't ashamed of crying - I just couldn't deal with talking about it at that moment at all. And back I slid into the depths.

The second half of the scan was easier. The shock at the strength of my feelings had passed. And now I knew how claustrophobic the scanner was. I spent the rest of the time thinking how I was going to make the kids' hyena costumes for their performance (almost as stressful as a scan for un-artistic me, and certainly distracting!!!!), and picturing my drive home to fetch Harriet. I was relatively calm by the time all was finished - but felt absolutely washed out and exhausted for the rest of the day, and was really shaky on the drive home.

I don't know why I'm surprised really - but I am nevertheless - at the degree to which my traumatic memories can come up and grab me by my throat in dreams, or sometimes still in my everyday existence.

I haven't had the results yet.

Today

I was offered a job today. A part-time job I really wanted in a great school. I am quietly pleased with myself - the interview was challenging: I haven't worked for three years and I had to admit to the gaps which would necessarily be there after some time out of a profession which changes faster than is strictly necessary! But as I said to them, I'm a fast learner.

It's all a big step forward on the journey to my future - my healthy future where my cancer is nothing but a horrible memory. This time three years ago I had started my chemotherapy, my hair was falling out and I didn't know if I would see Christmas. I wouldn't and couldn't have imagined that I'd ever be well enough again to apply for and accept a job like this.

It's the same old stuff - yada, yada yada. This time three years ago yada yada yada. But I'm still living with the legacy of what happened in many ways - physically and emotionally. It's increasingly a private legacy: there's only so many times you can say these things to the people around you without, I don't know, sounding as if you're going on.... I seem to be able to 'go on' on my blog though. Sorry.

Anyhow - that's good news for me and for the family, although there'll be some changes around here! I do feel bad for Hattie - our peaceful days of lunchtime CBeebies' watching will be truncated. But I'll still be at home for part of the week, and we need the money. And maybe I need to get back to my career. My other career.... I'm still hoping, probably in vain, the writing will take off.

Back to Work

So - if I go back to work next year (it's looking maybe like 4 days a week - it's the only offer I've had which isn't full-time!!) I'll feel guilty and sad at all that I'm missing. Hat's still small, the other kids are not big and they all need their mummy. I'll need to fight to be able to have enough time to see their school plays and concerts and to see Hattie settled for her mornings at nursery. I'll still be organising all the shopping and cooking and washing with a big burden of marking essays, planning and general work-demands hanging over me too. Can I cope with secondary teaching (high school, that is) and all the stresses that it brings, along with all the current stresses of family life.....as well as the ongoing saga regarding my health????

But - we need the money first and foremost. Even with childcare (lots to be thought about there) the money I'll earn will come in very very useful. I'll have all those weeks of holiday when I'm free to be with the kids and Roger and I'll still have a day a week to get myself, the house and the kids organised. Bills need to be paid, and life is always too expensive however hard you try to be frugal, something which isn't a natural character trait of mine I'm forced to admit. The time has come I guess, but with Hattie just 3 it's come quicker than I anticipated. I worked before I had Hattie when the other kids were very small. It was just two days a week and I remember how hard it was just to get everyone out of the door. And now I have to give Ed his treatment twice a week in the early morning just to add a small detail of fun into the mix.

Underneath it all, though, I have to admit to a little (and sometimes very fleeting indeed) flicker of excitement at the prospect of finding some sense of myself again -an adult, work-place me with something new and challenging to do. Teaching changes all the time - I haven't worked for three years and there'll be a steep learning curve up which to climb.

I need time to write though, and I need space to stay well. Three years ago I was dying and since then I underwent a year of hardcore treatment to get into remission. I'm coming up to 2 and a half years in remission now. It's a good length of time, but it's not 5 years. Not yet.

I've got to find a balance so that I can keep healthy and keep my family well. What a terrifying prospect.

Weekend and all that stuff.....

Another weekend filled with kid-related activity.

Before I start to moan about how exhausting it is to have three small children, and I'm afraid to say that this had been the intention of this post - a familiar theme of my blog, I'm sure you'll agree - I need to announce Harriet's third birthday. While this is hugely significant for her (chocolate cake with Smarties and "cangles" or should that be candles??), it is enormously significant for me too.

Three years ago I was visiting my tiny premature daughter, born at 32 weeks, in the Special Care Baby Unit. She spent her first days hooked up to tubes with an oxygen mask strapped over her impossibly tiny face. I had just come from another part of the hospital having had a scan to see if the cancer had spread from my chest into my abdomen. My prognosis was poor and my first dose of chemotherapy was scheduled for the following week; and after that I was facing the best part of a year of aggressive in-patient chemotherapy, a bone marrow transplant and radiotherapy. My other two small, small children were waiting for me to come home.

I am increasingly bemused to think how I managed that time from moment to moment. I know I spent my days, and nights, waiting to die. And I never, never, never thought I'd be making Hattie a cake on her 3rd birthday here in May 2011. She had a party with all her family this weekend. And along with singing, "Happy Birthday to you", we all quietly toasted my health too.

I'm not out of the woods yet - I have to get to her sixth birthday to throw the mother of all parties. I'm planning one too. It'll be my 45th birthday just after her 6th. On my 40th I was still very unwell, so a party was not really in order. But if I'm here on my 45th - and I'm more confident than I've been for the past three years that I might just get there - we're celebrating in style. I'm already saving for the holiday of a lifetime for Roger and I.

It's good to look forward - I can tell you.

So - luckily for you, I'm not going to moan after all. I'll save that for next time!

Catch-Up

No - I didn't get the job, and although I was disappointed I'm beginning to see it as the best thing really. Two people working long hours is really two people too many when the kids are so small.

So, I'm back to my original plan of looking for part-time teaching work and supplementing that with doing some private tuition and some exam marking. Glamorous it is not, but I think it's the best way at least for the next couple of years before Hat starts nursery and school.

And maybe I'll get my lucky writing break before then and become an official writer! And then again...

I'm finding it so hard to find time for my blog at the moment. I'm missing it - but feeling strangely uninspired about what I want to write. Life gets in the way I guess, and just as my other writing has suffered through the past turbulent couple of months, with family stuff and work stuff pushing itself to the front, the blog has not been paid its due attention either.

The kids finish for the Easter holidays on Friday (I can't wait!) and we're heading off to my mother's house in the Highlands of Scotland for a couple of weeks. I'm hoping for some peace and quiet and some space to try to do some writing again.

I am reading though - lots and lots. If only an avid reader made a successful writer. I'd be sorted.

And for the first time since I was diagnosed with cancer I've re-scheduled my three monthly check-up for after our trip to Scotland. Which means it's more like a four month gap. I know that seems insignificant, but for me it seems to represent something important. Those appointments have always felt written in stone for me, and in the early days were times to dread. As Hattie's third birthday approaches at the start of May, which is also the third anniversary pretty much to the week of my diagnosis, I guess my confidence that I might just be ok is returning.....just a bit!

Hello 2011

Today the kids are back at school and Rog is back at work. Hattie is asleep and the house is peaceful. I've just finished taking down the Christmas decorations and wrapping them up for another year. And this year I'm not putting them away with dread in my heart as to whether I'll be around to unwrap them again next year.

I'm not out of the woods yet as far as my cancer returning is concerned. I'm only two years in remission and I've got to get to five. But somehow, for some reason that doesn't feel as scary as it did. I guess that time does heal, and that the dreadful truly harrowing year following Harriet's birth is fading from the foremost of my memory. I'm living with some distressing, and what I'm scared to think might be permanent, long-term side effect of the chemotherapy - but I'm alive.

I've a hospital check-up appointment next week: always anxiety provoking at the best of times, but I'm looking and feeling well (apart from that pesky sinusitis which often hovers around) and it was gratifying to hear at the New Year party how many people genuinely complimented me as to how healthy I was looking. In fact I have a suspicion that dancing until 3am might have been what sparked off the sinusitis. A far cry from the way I said goodbye to 2008, thank heavens.

And new year's resolutions? Pilates. And writing. Quite a good mix actually, I think.

To Newcastle

Recently I went to hear Ian McEwan speak at the Newcastle University, just over the river from where we live in Gateshead. He was amazing - so clever, articulate and erudite. Well, what would you expect from Ian McEwan?

I left here at 6.30pm. Rog had just walked in the door while I attempted to make a pretty sharp exit. And I left - the kids to their bed-time routine and the house to its mess.

Later, after the event I walked on my own back to the car across the beautiful old campus, underneath the ivy-covered arches and I felt acutely transported back to another time in my life 20 years before.

You see, I did my undergraduate degree at this university, far away from what was my home then in the south of England and when I worked it out it really was 20 years ago - more - when I started.

Walking across the flagstones past the building in which I had studied, all those years ago, I passed a group of students - kids they looked to me - with arms linked, all chatting and laughing. I felt as if I was passing myself coming the other way. Would I recognise my 41 year-old self, filled with different pre-occupations, hurrying back in the other direction to my three children? Would I have expected my life to have been as it has?

Cutting through onto the road I'd parked my car, the hospital loomed dark against the night sky. And there too were so many memories. In that hospital was where I'd had my three babies, and also where I'd had all my cancer treatment. The actual ward three storeys up where I'd endured my chemotherapy and my bone marrow transplant had been due for demolition not long after my treatment finished. The building was shaped like a thin arm and for a long time the partial demolition cut open the end so one could see inside the three storeys at once like a tube with the end severed. Into that maw I could see the space where the beds had been, hanging open to the elements. Because there were people who were so very sick in that ward, fresh air was not allowed. Instead there was some kind of system which kept the air purified and hideously stuffy - it was one of the many discomforts about staying there. I would drive past and feel glad that there was air in there at last.

Now, however that part of the hospital has been entirely demolished, and the cancer centre rebuilt elsewhere in the city with flash new facilities and all mod-cons - that's where I have my appointments now. And back at the old hospital the space where I had all my treatment just doesn't exist anymore. It's thin air. And that makes me feel very very strange. It's almost like a dream - or a nightmare. It's almost like it didn't happen. But that ward, those rooms, that space where my worst nightmare did come true are etched in my mind and in my memory. I dream about them and they don't exist anymore. I cannot successfully convey how uneasy their absence makes me feel.

Driving home over the beautiful Tyne Bridge, the river lit up by lights on the Millenium Bridge and the Sage, I realised what a connection I have with the city of Newcastle. It's my home now - my adopted home. Twenty-two years ago I came here to study English at the university. I had a fabulous time and made friends and memories which last until today. Then I left for a few years - did my teacher training in the south and worked for a while down there. But the place lured me back and for the past 14 years I've lived in Northumberland and then the city. I've married here, had my children here, nearly died here and hopefully will grow old here.

I miss where I grew up and those country lanes along whch I walked and rode are part of my fabric but this city is a shape superimposed on top, blending and blurring until I almost can't tell which came first. My southern accent will forever mark me out as a newcomer, my children are already skilfuly mixing the Geordie and the South in their speech. And they truly belong to the city, born in the centre. This is their home.

(apologies for this re-posting!)

Today

So, I went to the hospital today. The consultant checked my back and felt my neck for lumps. She acknowledged that it was indeed lumpy and when I asked her if she was worried she said she wasn't. Immediately after that she asked me when they last took blood and said they should do it today. I'm trying to imagine that it was just a co-incidence that she decided to mention that directly after feeling my neck. I guess it is just routine - that said, they haven't been checked since April. The doctor seemed fairly casual and I made an appointment to come back for my next routine check-up in January. I hope she's not thinking that she'll see me sooner.

Blood results won't tell me directly anything definitely about whether the cancer has returned or not. They test for liver function, red and white blood cells and also there is a check on whether a certain scary marker has risen or not. If that marker has risen, that can indicate tumour growth, but it doesn't necessarily. Then they start those horrible CT scans. Even writing this is making me feel panicky.

Lets hope the blood tests were just routine and that they're fine. Oh my God.... I hope.

Tomorrow

I'm feeling low. Tomorrow I have one of my three-monthly check up appointments at the hospital. If you've been following me for a while, you know how I feel about these, and if you haven't you can no doubt guess.

As usual when these appointments roll around I'm feeling rubbish. It's sod's law that I should have sinusitis just before it - something which harrassed me all of last year but which has stayed away for longer this year as my immune system improves. But now I've painful lumps in my neck which are always a cause for concern, despite logic telling me they're not cancer lumps but sinus-y,virus-y lumps. I'm feeling exhausted which is a cause for concern despite too many late nights, sinusitis, and the worry which sits very heavily on my shoulders at times. And I don't want to walk in through the doors of the hospital feeling anything less than brilliant.

I'm taking Hattie with me. My friend has offered to look after her for me but I've decided that I need her. As much as anything else she is a talisman for me - to ward off the fear, and to make me feel normal..... not someone living with cancer, living with the terror of dying young. I can't disappear into myself too much when I'm in the waiting room if Hattie's running around - although I may regret it after I've been there a while with a crazy toddler.

I wish I could run away from everything sometimes. Still, time ticks onwards and I'm still well....I hope. I think the emotional legacy of what happened to me is something which will take a lot longer to fade. On the surface I look fine - but underneath things are often in turmoil.

To Newcastle

Yesterday evening I went to hear Ian McEwan speak at the Newcastle University, just over the river from where we live in Gateshead. He was amazing - so clever, articulate and erudite. Well, what would you expect from Ian McEwan?

I left here at 6.30pm. Rog had just walked in the door while I attempted to make a pretty sharp exit. And I left - the kids to their bed-time routine and the house to its mess.

Later, after the event I walked on my own back to the car across the beautiful old campus, underneath the ivy-covered arches and I felt acutely transported back to another time in my life 20 years before.

You see, I did my undergraduate degree at this university, far away from what was my home then in the south of England and when I worked it out it really was 20 years ago - more - when I started.

Walking across the flagstones past the building in which I had studied, all those years ago, I passed a group of students - kids they looked to me - with arms linked, all chatting and laughing. I felt as if I was passing myself coming the other way. Would I recognise my 41 year-old self, filled with different pre-occupations, hurrying back in the other direction to my three children? Would I have expected my life to have been as it has?

Cutting through onto the road I'd parked my car, the hospital loomed dark against the night sky. And there too were so many memories. In that hospital was where I'd had my three babies, and also where I'd had all my cancer treatment. The actual ward three storeys up where I'd endured my chemotherapy and my bone marrow transplant had been due for demolition not long after my treatment finished. The building was shaped like a thin arm and for a long time the partial demolition cut open the end so one could see inside the three storeys at once like a tube with the end severed. Into that maw I could see the space where the beds had been, hanging open to the elements. Because there were people who were so very sick in that ward, fresh air was not allowed. Instead there was some kind of system which kept the air purified and hideously stuffy - it was one of the many discomforts about staying there. I would drive past and feel glad that there was air in there at last.

Now, however that part of the hospital has been entirely demolished, and the cancer centre rebuilt elsewhere in the city with flash new facilities and all mod-cons - that's where I have my appointments now. And back at the old hospital the space where I had all my treatment just doesn't exist anymore. It's thin air. And that makes me feel very very strange. It's almost like a dream - or a nightmare. It's almost like it didn't happen. But that ward, those rooms, that space where my worst nightmare did come true are etched in my mind and in my memory. I dream about them and they don't exist anymore. I cannot successfully convey how uneasy their absence makes me feel.

Driving home over the beautiful Tyne Bridge, the river lit up by lights on the Millenium Bridge and the Sage, I realised what a connection I have with the city of Newcastle. It's my home now - my adopted home. Twenty-two years ago I came here to study English at the university. I had a fabulous time and made friends and memories which last until today. Then I left for a few years - did my teacher training in the south and worked for a while down there. But the place lured me back and for the past 14 years I've lived in Northumberland and then the city. I've married here, had my children here, nearly died here and hopefully will grow old here.

I miss where I grew up and those country lanes along whch I walked and rode are part of my fabric but this city is a shape superimposed on top, blending and blurring until I almost can't tell which came first. My southern accent will forever mark me out as a newcomer, my children are already skilfuly mixing the Geordie and the South in their speech. And they truly belong to the city, born in the centre. This is their home.

Thursday Moaning and Hattie's New Pants

I'm tired of being skint. I know that I'm a whole lot better off in many many ways than the majority of the world's population. But that doesn't help me feel better today, although it damn well should. I had to squeeze a measly £20 out of the cashpoint to put enough diesel in the car to stop the fuel warning light from flashing.

I can't find work and I can't see how I can fit work into the week along with the kids- but many many do just that I know. I NEED to earn lots through my writing. Is that too much to ask?

I'm feeling very very tired and am having strange pains and strange skin things going on. Underneath everything else I'm worried that the cancer has returned. I'm seeing my consultant in a couple of weeks - an appointment I'm already dreading.

And I'm toilet training Hattie. Cue total obsession with lovely, new, stripy pants - pulling trousers down to admire them approximately every couple of minutes, lots of theatrical sitting on potty complete with arranging hands on knees to best effect. Lots of jumping up declaring that 'nothing's coming!' and then wet pants and trousers a few moments later. She doesn't seem to have grasped that it's supposed to matter if you wet yourself and that you're meant to wee in the potty. To her - wet pants? wet potty? C'est la vie. It's all good.

What's Going On

I'm getting into cycling! The whole family are getting into cycling. We have been given by a friend, whose kids have grown too big, a sort of trailer thing for Hattie which attaches around the wheel of an adult's bike. Rog's not mine, I voted early on!

But we're off to Scotland on Saturday for a couple of weeks, and we've decided we HAVE to take the bikes and the trailer with us so we can go off for lovely picnics in the wilds. However we also have 4 kids (my 12 year-old step-son is coming too) and lots and lots of stuff as you can imagine. So for the past couple of days we have explored EVERY option you can imagine to carry 5 bikes and 6 people on a 9 hour car journey. Tomorrow we're fitting a tow-bar and a flash bike carrier for a fair amount of money. The picnics had better be worth it!

It is lovely to be considering such things - two summers ago surviving chemotherapy, a bone marrow transplant and radiotherapy were the preoccupations which filled my mind.

I've had some tentative good news regarding my writing. A big glossy national magazine are interested in commissioning an article - but it's not final yet! I'm excited though anyhow. I feel as if some of my recent hard work might be paying off at last. Watch this space!!!

P.S. on a completely different note - does anyone else have an extremely obstreperous 2 year old who runs the whole household with the ease of an experienced tyrant? Mine is very exhausting..... I'm trying not to wish for her to become 13 when at least she'll be sulky and silent and .... oh hang-on... argumentative and difficult. Hmmmm. Well, 16 then. Ok, 35.

Ear-muffs at the ready for that long car journey!

Worry is a Good Friend of Mine

I'm writing this post having just picked the kids up from school. It's not the best time - arguments about changing out of school uniform, clamouring for biscuits and general shouting is ringing through the house.

But I'm worried. The ache in my back which I wrote about a while ago still hasn't gone. It seems to come and go a bit, which the pain used to do when I was harbouring an enormous tumour! I don't know whether to go and get checked out. As usual it's so difficult trying to decide whether to open that particular can of worms or not. I think to others it always seems quite simple - go and get checked out! But to me it isn't that clear. I expend a huge amount of desperate energy while the tests are happening, and I suppose in a way I'm beginning to think that I'll know soon enough for definite if it has come back just by the way I'm feeling. But that's scary too. I'm so tired (as usual) and I caught sight of my reflection today accidentally and was quite shocked how pale and generally grotty I look. That could be cancer-grotty or getting over some crap sinus-y thing-grotty. Who bloody knows.

Rog and I are off to sunny Majorca next Friday, without the kids! I'm looking forward to it more than I could possibly say. I don't want to spoil the run up to the trip by rushing hysterically in and out of hospital having tests, but neither do I want to spoil the holiday by worrying. However, if it has come back and I find out now I won't have the holiday at all. And I'm determined to have the holiday. Do I sound mad? Probably.

It's exhausting this worry it really is. And of course now I have to make tea and do all the other never-ending stuff which the kids expect and need. People are always telling me how lucky I am to have the kids and how they must help me to get through all of this. Yes... I'm lucky. But there have been many moments back when I was having my treatment, and subsequently too when I would dearly appreciate some space to sit down with a cup of tea, rest and worry in peace.

What I Remembered Today

This is what I remembered today, after my beautiful son and daughter burst in to my room clutching cards, flowers, presents and chocolates for Mother’s Day, the baby shouting 'Mummy, Mummy' from her cot in the other room. When they left me alone with my coffee and breakfast in bed, carried upstairs on a teetering tray, this is what came into my mind.

.............................


“I’m going to wrap this cloth around your head. Now, turn your head to the side and keep it there. Please don’t move or try to look at what the doctor is doing."

The nurse’s hands held my head still and in place. I fixed my eyes on a spot on the wall.

“Right – I think the anaesthetic’s ready. It’s all numb there? You’ll feel some pushing and shoving. With you young ones it can be quite hard to get the valve into the artery. It shouldn’t hurt though. Let me know if it does.”

Squeaking my assent I gritted my teeth as the revolting tugging and pulling sensations began in my numb chest. I was having my Hickman Line put in in preparation for my intensive chemotherapy which would start later that day. The day before we had celebrated my daughter’s third birthday, a week too early as I’d be in hospital on her actual birthday, but she wouldn’t know. My new daughter, born eight weeks early and currently in the Special Care Baby Unit in an incubator was learning to feed from a bottle – no breastfeeding for me anymore – and I was missing her feed. I hated missing her feeds. I’d spent the morning over in the maternity part of the hospital and had left part of my heart over there with her as I lay on the operating table.

The Hickman line was being attached to the main artery above my heart so that the heavy-duty chemotherapy which was going to be dripped into me over a period of four days and nights, every few weeks, could do its work. Blood could be taken from this line and antibiotics or anything else administered.

“At least it’ll mean that we won’t be prodding you with needles, morning, noon and night.”

I was sceptical that this was such a major advantage and more so when I discovered that I would not be able to have a bath for the next six months or so in case the ends of the lines became wet. The two bizarre snaky white tubes, six inches long, which would hang out of my chest would need to be covered when I showered. Apparently women usually coiled them in their bra during the day and then tucked them in a little bag which hung around their neck at night to prevent them catching on anything. Hmmm. I was not convinced by these jolly descriptions although I was to find myself doing all these things eventually as a matter of course.

Back on the table the squelching and the pushing became quite unbearable. Sweating profusely I began to seriously wish that I had accepted the offer of a sedative before the procedure. I’d turned it down because I’d decided that I didn’t want to be struggling with the after-effects of the sedative when my chemotherapy begun.

“Gosh – this is really tough!” the surgeon joked. “You’re giving me a run for my money here!”

The nurse could feel the stress pouring off my skin and I could feel the sweat trickling down my face, turned as it was to the side away from my upper right chest.

“You’re doing so well. We’re nearly done now. Take some deep breaths.”

I began to cry. My children – my four year old son, and three year old daughter and the little scrap of a person, vulnerable and tiny in her cot in the SCBU were all apart from me and would be for patches of time over the coming months. I was due to have a bone marrow transplant in four months and would possibly be in hospital for up to five weeks. It was all too much.


Later with a big bandage over the contraption in my chest I wept again as I was taken to my room on the ward in the old part of the Victorian hospital, due for demolition later that year to be re-built with all mod-cons. It was cold, there was no TV and couldn’t have been more bleak.

“I’m leaving,” I sobbed to Roger, hysterically struggling with my clothes. “I can’t stand this. I can’t stay here. It’s horrible.”

“You know you can’t. You have to stay. They’re coming with your chemotherapy in a while. You’ll be ok.”

The desperate strain reflected back from my misery on his face. But they heard me sobbing. They moved me to a different room – a little less bleak and I calmed a little.

Later still, hooked up to my chemotherapy, the big bag of poison dripping slowly into me, hooded in green plastic to protect it from the light, I buzzed the nurse.

“Is it possible that I could be feeling sick already?”

She handed me a bowl in reply and pushed some anti-sickness drugs into my line.

Lying alone in my bed, trying not to get tangled up in the tube going from the drip-stand into my line, Roger gone home to the kids via the SCBU to check on the baby, I wondered if I was going to survive. It was all so desperately dreadful; the buzzing of patients needing the nurses, the sickness lingering at the edge of my consciousness, the sickness which was to get so much worse with subsequent treatments, and the time slowly ticking away through the night keeping me from my children. Floating between sleep and waking I felt entirely and absolutely alone.

That is what I remembered today.

Thanks

This is a thankyou. To Tracey at uno,dos, Tracey for your thoughtful message on my last post. You are right - I do need to 'listen' to what the information I read is telling me. I subsequently read that people who undergo bone marrow transplants can struggle for quite a while with long-term fatigue. Apparently it is a well known side effect.

It has been useful to read all this stuff which I had been putting off. It has reiterated what a tough time I've been through in terms of treatment - and reminded me how amazing it is that I'm still here to write this. I really do need to let myself relax more and remind myself that I'm really not 100% yet although I look as if I am. And that's partly the problem. I feel as if people are saying - you're out of hospital, a year away from your treatment. Why aren't you ok? But maybe they're not, maybe that's what I'm saying to myself. Anyhow - if anyone is saying that, I'd point out that I have had extremely high dose chemotherapy and a bone marrow transplant, plus radiotherapy. Not to mention a caesarean and a new baby while that was happening. And all that happened in the past 22 months. Couuld that be why I'm struggling with this overwhelming exhaustion?

It's helped to know all of this and to see it written in black and white. When I was going through it I literally took one step after another and kept my head down. Now perhaps I'm starting to process what happened.

I have decided to try to make early nights a priority for while. It can't hurt can it? Maybe it'll help. And I need some help that's for sure.

That old devil again

Oh dear. What did I do last night? Well, I gave in to the awful demon which hovers sometimes on my shoulder and for the first time since I was diagnosed with non-Hodgkins' Lymphoma, I looked the disease up on the internet.

From the outset I'd decided to entirely trust my doctors and not to read lots of scary, complex stuff which I'd half understand. And I stuck to it. The battle seemed too overwhelming without confusing the issue. I was very clear-headed about this decision much to the bemusement of some of my friends.

But last night for a couple of hours I surfed around. My version of the disease is very rare. Last night I found out just how rare. I found descriptions of the type of chemotherapy I'd had with medical analyses regarding its harrowing nature. There were accounts of deaths having undergone the chemotherapy I had, and accounts of deaths after the stem cell transplant I underwent. There were reports of the long-term effects of the chemotherapy - heart disease and other cancers.

But worst of all I stumbled across a study written for a medical journal. In this study out of 152 people who presented with NHL only 7 had the type of NHL which I had. Five years later, out of the 7 only 3 were stll alive and they had all had surgery to remove the tumour in their chest which I didn't. My (enormous) tumour was shrunk by the chemotherapy and I still have a lump of scar tissue left in my chest. Of the 4 who died, 2 died of chemotherapy related issues while having treatment, one died after the cancer had returned having been in remission for 6 months; and one died when the cancer returned after 46 months!! Oh my god! My consultant very clearly told me back in October that I wouldn't be anywhere near safe or even with the danger considerably reduced until 3-5 years have passed. That's not until 2012-2014. So I knew that. But imagine sailing along 46 months into remission feeling ok when the bastard returns. That's nearly 4 years. I've only been in remission for 1 year. It's all too much.

Of course it does NOT NOT repeat NOT help to read all these things. I've been feeling much more positive since my scan in January and have been more able to look into the future with something approaching equanimity. And I really have been shaken by all that I read - and there was much more than what I have described here. I feel quite traumatised really although reading all this hasn't told me much that I didn't know. It's just very very hard to read it all in black and white. Rog is very cross with me for doing this and upsetting myself although when I was first diagnosed he confessed that he'd spent hours looking online as well. I don't feel that I can burden my family and friends with all these new worries or rather these old worries which have reared their ugly heads again. So I'm using my blog instead. I hope you don't mind.

I think I need to try to rise above the anxiety although that's easier said than done. But, it is easier than it was. I hope it is anyhow. It's not feeling so easy at the moment.

However, it's another lovely spring day. Perfect, now - which is all anyone of us have after all.

To HRT or Not

Things are just crazy around here. I'm feeling absolutely shattered at the moment - lack of hormones, oestrogen in particularly apparently to blame - as I discovered today at the hospital. I've been taking a break from the HRT as things seemed to improve a bit in the hormone department back in October, but things have crashed even further into menopause than they were at the end of my treatment. All very depressing. I'm really having very severe menopausal symptoms which are disturbing my sleep and wrecking my days really. The aggressive treatment I received has led to an aggressive menopause.

I don't want to take the bloody bloody HRT - I've had enough of taking 'bad stuff', and I want to be as healthy and drug-free as possible. I don't want any of the potential side effects thank you very much. On the other hand, my oestrogen levels have dropped to such an alarmingly low level that if I continue not to take HRT apparently I'll need regular bone density scans to check for osteoporosis. Also, taking HRT would apparently have a marked positive effect on the desperate exhaustion I'm feeling, the sleeplessness and the swamping hot flushes which dog me night and day.

The problem is that I'm struggling - struggling with dealing with the kids, with managing my exhaustion and everything else at the same time. I'm only a year away from experiencing 'all they could throw at you' as the doctor today put it when describing my treatment. That treatment - the chemotherapy, stem cell transplant and radiotherapy still leaves its legacy today, and I had a newborn baby to attempt to mother through that experience as well as the other two kids. I never really rested then and I sure as dammit can't rest now. Perhaps struggling to stay off HRT is more than I can cope with now. HRT would undoubtedly provide me with some respite which I bloody need. What's a little weight gain, sickness and extra risk of getting various cancers? (yup, I could certainly do with that one!!)

If I'd gone into the menopause naturally I'd NEVER have considered taking HRT. But now everyone close to me, the doctor included, clearly thinks I'm crazy for even considering doing without it. But then they haven't had poison dripped through their veins for days on end. I know, I know -it got rid of the cancer, for the time being at least, but at some severe personal and lasting cost.

And, now I want another baby. Sort of. At least I would like the chance of having one. Most of all I'd like those good old hormones back. No-one's holding out much hope though. I think I had a bit of secret faith that my body might perform miracles, but now even I'm losing faith.

I don't know.

This Morning

6.00am - Ed woke Martha and they started to talk VERY loudly in their room. But after major threats last night before bed following weeks of early rising, they stayed in their room and didn't thunder upstairs to see us every few minutes in tears after arguing - miraculous!

6.30am - Our alarm went off. The Today Programme filtering into the freezing bedroom (our heating timer has not yet been fitted on the new boiler). Hattie started chatting to herself in her room. Rog, needing to get to work early, hauled himself out of bed and went to put the heating on and make the kids' porridge while I had a reluctant shower. I'm sleeping so badly at the moment that I feel tired even in the shower.

8.00am - Rog long gone, kids dressed for school and Ed ready for his Monday morning IV treatment of Factor 8. Secretly, I've been feeling pretty stressed about this since yesterday evening. But, I manage despite not hitting the vein the first time.

8.30am - kids and I out the door to catch the bus to school as our backyard and lane still has too much snow to easily use the car. Bus takes ages, long walk down the slippery, slushy hill to school. Ed falls once (thank god I managed the treatment) and Martha twice. I manage to stay on my feet thanks to my lovely Hunter wellies. Can you guess how pleased I am with my wellies?

9.30am - Back home. Hattie very lively - damn, need her to sleep so I can do all the house stuff needed. Manage to put on the washing at least. Make my smoothie - need an energy boost.

10.30am - Sign up for the 2010 5KM Run for Life. Surely I can manage that by the summer? Decide that I'm going to get a pedometer and start walking seriously. I'm going to try to cut down on my carb eating in the evening too, to try to lose some pounds. Hmmm. I'm so exhausted by the evening that I can't imagine managing without my baked potato or rice - but we'll see.

10.45am - Hear on Woman's Hour a speaker from Macmillan Cancer Support, and a cancer survivor talking about the long-term effects of chemotherapy and radiotherapy, and realise that I have been suffering from some of these for the past year since I went into remission. The exhaustion, for one, has definitely been a factor to contend with, over and above that which comes with having three small kids. The radio programme was discussing the fact that when you finish your cancer treatment, you are really cast adrift back into your life with very little guidance or warning about how you might feel in the coming year or two. Consequently, I have been really pushing myself to get fit, lose weight and generally resume normal things long before my body is ready for that. Particularly after the very aggressive treatment I received. Of course going back to all the old stuff is what I want - but the frustration I've felt that I haven't been able to manage all the goals I've set myself has added to my stress and not helped my peace of mind. I only finished my radiotherapy this time last year - I now begin to see that I've been asking too much of myself for much of that time. The scan coming up on Thursday is obviously focusing my mind and my thoughts on all of this. If the results are ok (pray god they are) I think I need to treat myself more gently and try not to vilify myself because I'm not looking or feeling my best yet. That will come with time and care.