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.

Two Years On

This week, surprisingly in many ways, has become a very significant week for me.

It's nearly Hattie's second birthday and the two year anniversary of the week that an x-ray discovered a huge tumour in my chest. I've come on such a journey in those two years; such a significant and torturous journey that I'm nervous to try to write this post - I need to do my experience justice, I need to untangle it and describe it so that I can live it and know it and put it away into the past. Does that make sense?

On Monday I took Hattie back to the Special Care Baby Unit where she'd spent her first 8 weeks of life. This is where the start of my drama unfolded itself as I visited her from a different part of the hospital, unhooked from my chemotherapy drip for a precious half an hour. It's where the photo was taken of me holding her on my 39th birthday, less than two weeks after her birth with Ed and Martha either side of me, my hair shorn and skin yellow, looking as close as I hope I ever come to death before I'm an old old woman.

I wasn't sure they'd let me in to the unit - I imagined they'd be busy and distracted, and I pressed the buzzer very tentatively, memories flooding back.

"Oh yes! I remember you, of course I do! Come in."

As I wheeled Hattie in her buggy through the unit she was wriggling to get down. How different to the last time she was here. We'd had to rush her back to the unit when she'd been out with us for a day as she was too still and pale. She'd had a blood transfusion and another overnight stay. Now, a beautiful, fiery and opinionated blonde toddler - a miraculous metamorphosis. All around in the bays were tiny tiny babies. I found myself standing in front of the bay which Hattie had been in for weeks. One of the nurses pointing to a space remembered exactly where Hattie had been.

Everyone was so pleased to see us well and healthy.

"You look a whole lot better than you did when we last saw you," I heard over and over again. Smiling, nearly crying really absolutely overwhelmed by the smells and sounds, I said helplessly over and over again,

"I am well, I'm very well. I just wanted to say thank you to you all!"

The nurse who'd spent a lot of time with me when Hat was in the SCBU had a day off, so I didn't see her much to my sadness. I'll never ever forget that she'd gone to buy a cake and made a card with Hattie's hand and footprints which was waiting for me on top of Hattie's incubator when I came in on that birthday. Of course I still treasure that card today. I asked the other staff to remember me to her and to thank her again for me. As we walked around Hattie became increasingly and uncharacteristically quiet. It almost felt as if she knew or remembered something about the place we were in.

Later downstairs in the hospital cafe I sat with my coffee and didn't know what to think or feel. This was where I'd sat so many times before. And now, here I was in another place and time with Hattie covered in strawberry cupcake - I figured she deserved a strawberry cupcake - and with a second chance maybe.....maybe... ahead of me.

And then on Wednesday I went to see my consultant for my three-monthly check. Not that there's much to do these days because unless I go and mention some specific ache or pain to be investigated, they're not routinely scanning me anymore and nothing really happens at these appointments. But she told me that she'd just been to Switzerland to speak at a conference about non-Hodgkin's Lymphoma. I had Hattie with me at this appointment - just to set the scene, squeaking and wriggling - and I have to say that my first thought was one of envy. Imagine having a high-powered career and having to be in Switzerland rather than making tea seven days a week! Anyhow. She said that there'd been lots of positive feed-back regarding the prognosis of people with my very rare form of the disease (she'd only treated 15 people with it in her whole 25 year career) since some new treatment was trialled, given along-side the chemotherapy. And I was lucky enough - and I use the word 'lucky' carefully - to be one of the first to be given this treatment. Although the cancer is so rare that there aren't loads of usuable statistics regarding prognosis, it seems that the use of this treatment, Rituximab, means that survival rates might change from as low as 30% (beyond terrifying) to over 80%! That's incredible.

I'm quite overwhelmed really, when I think of how many times I've been lucky since I was diagnosed - given that I was so bloody bloody unlucky to have developed this fearsomely aggressive cancer in the first place. I was lucky that the A and E doctor listened so carefully to the desciption of my symptoms, when I walked into the hospital off the street at 30 weeks pregnant and that she didn't just dismiss me as tired and pregnant as my GP had done only 3 weeks earlier. By the time someone did listen to me I apparently only had about three weeks to live and obviously my unborn baby was in great jeopardy too. It also turned out to be for the best, in some wierd and scary way, that the GP did dismiss my symptoms when he did, as every day counts with premature babies and they would have made me have Hattie much earlier then the 32 weeks at which she was born. And at nearly two she is fine now - no-one would be able to guess at her bumpy start. There was a very narrow window of time when I could be diagnosed and treated with any chance of survival and Hattie also would be ok. One of us or both of us could so easily have died.

I was lucky to say the least that I fell into the hands of my consultant - one of the top doctors in the country in her field. I was lucky that she knew about this new drug and its possible benefits and was able to put together a treatment schedule which in her own words was 'aggressive' in order to give me the best chance of survival. I was lucky I survived the actual caesarean - they were worried that my heart and lungs might not cope with the pressure of the tumour while I was under anaesthetic, and I was lucky that Hattie went from strength to strength every day. I was so so lucky that my body responded as well as it did to the treatment I had for those long months. And two years on Hattie and I are so so lucky that we're here, in remission and thriving.

It's kind of hard to express my thoughts about all of this and impossible in some ways to describe the desperate path down which I've been forced to travel. Snapshots, experiences, emotions, smells and tastes are locked inside me and only inside me. Even the people closest to me cannot share those. Perhaps they may become woven into pieces of writing I've yet to create, hidden or maybe disguised inside other shapes. It's such a cliche to talk about the way an experience like this changes one's life - that it makes one appreciate the small things in everyday life for their value. I'm still working on that one really, but it is true too, like all cliches. Having one's assumption of immortality shaken to the core, an assumption which we all fundementally carry around childlike inside ourselves, is like living through a private and invisible earthquake. And that is certainly life-changing.

The doctor said that she doesn't think it's going to come back. She's never said anything approaching that before. She knows that I know that that statement doesn't come with any kind of guarantee. Earlier in our appointment she'd reiterated that people were 'in trouble' if it did return. My regular check-ups will continue until I've been in remission for five years - and I'm only one and a bit years into that period. But I felt the significance of what she said and understand it to be in some way an echo of the way my own confidence - the confidence that maybe, perhaps, I can think again about having a future - is very slowly returning, jerkily in fits and starts but returning nonetheless.

At the end of the appointment I walked down the corridor of the hospital holding Hattie's hand, the doctor on the other side. She asked Hattie if she could hold her other hand and Hattie very solemnly gave it to her.

"This is the first time I've held a hand as little as this for a very long time. It's lovely!"

And as we went our separate ways it was funny to think that in some ways she envied me my life at that moment just as I had earlier envied her hers.


*************

Two years ago my family were just embarking upon this journey. Now we're here in this place, in our present. The most I can hope for - and it's hoping for the world - that the ripples from that stone thrown into the centre of our lives continue to reverberate outwards until they're so faint that they're no longer visible. Just known about and of course never forgotten.

A Year in Remission

I had the scan yesterday and today I found out that all was clear.

Inbetween the spaces of these words you might be able to glimpse at the kind of day I had today....

If the cancer had returned my prognosis was as good as terminal. Please bear this in mind as you follow me through the day.

I knew that scans were discussed in the morning by the multi-discipliniary team. So this morning I was kind of ok. I took Martha to her speech therapy appointment at 10.30 and took her back to school. I went to the supermarket to get some stuff - getting close to lunchtime now - getting wierd and trembly and twitchy in the queue.
By the time I was home the stress levels were ratcheting higher.

From 12, baby elsewhere, I huddled on the sofa next to the phone, waiting.... I had arranged with a nurse that she would call me in the afternoon. But the call didn't come. I tried to call and the phone rang and rang and rang. At each ring I thought that someone would answer and after necessary and desperate explanation somone might tell me my fate. But no-one answered the phone. All afternoon I repeated the call. By the time that I spoke to someone and expressed my desperation clearly enough, it was close to 4pm. They promised a doctor would call me back. And half an hour later, she did.

I'm pleased of course - understatement there!! I'm relieved and able to look my children in their eyes tonight. But I'm wrung out like I can't tell you with the level of stress I've had to manage today. There has to be a better system of care for people like me at times like this. I'm 40. I have three kids under 6 and I need to live. It was possible that I could have been given what would have amounted to terminal diagnosis today. If I hadn't kicked up an almighty fuss today, in all probability I wouldn't have been told anything at all and faced a harrowing weekend. It's not as if they said it was impossible to get the results so quickly. In my last conversation with the consultant and specialist nurse they agreed that it was reasonable and entirely do-able that I got the results today. But in the end the plan collapsed. That's some of what they were discussing on the radio the other day when I wrote my post. That sense of abandonment which I and so many others have experienced when we're not receiving treatment anymore. And all the doctors, nurses and other staff have got to know me well over the past 18 months. And I know they care about what happens to me and my family. I know my day was not made so unbearable on purpose. But unbearable it was.

However - it's clear, it's clear, it's clear. And I've achieved a year in remission. I'm going to spend the weekend planning how to move forward into 2010 with all the happiness and optimism I can.

Results

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

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

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