Dem bones

The classic 'thumbs up' after the church service

Tom and I were on our way from the hotel in Pakefield to the beach, a five-minute walk– or hobble, in my case, thanks to the cancer eating away at my pelvic bone– when we spotted a church perched on a cliff-top above the dunes.

Neither Tom nor I are religious, but it’s what you do isn’t it?  Well it’s what we did anway.  We wandered in past the sheep slumped idly amongst the old and weather battered graves, intending just to sit for five minutes and try to find some sort of solace.

As we took a pew at the very back of the sparsely-occupied church a lady in the congregation asked us if we’d like to join the evening service. We looked at each other, each telepathically willing the other to find an excuse to remain by ourselves, but when neither of us did, we agreed half-heartedly. I have a habit of getting the giggles when singing in church, a nervous laugh that recalls my six years old self in Mrs Bartram’s class, trying to suppress a face-reddening laugh when being told off.

We duly moved forward to a seat nearer the ten or so worshippers. A ruddy-faced man of around sixty who looked like he could have been a local farmer began to give a reading. He had a Suffolk accent and initially kept tripping over his words.  I was about to zone out when I heard the word ‘bones’. Suddenly he had my full attention. His nerves eased, his shoulders seemed to straighten and he read out a passage from the book of Ezekiel.

Now, I’ve never been Christened, I go to church about three times a year (mostly as a tourist), and have to admit to being fairly ignorant when it comes to the bible.  I know the basics; the one with the animals on a cruise, the one with the riot in the market and the one with the fully booked hotel! You get the picture.  I’m not religious but I do try to abide by the old cliche treat people how you would like to be treated.

Anyway, I digress. The story (as I understand it) was about Ezekiel who finds himself in the valley of dry bones and God asks him if the bones can live.  A doubtful Ezekiel says God alone knows. God then breathes life into the dead bones and tendons and flesh appear. God then tells Ezekiel to do the same, which he does successfully. The vicar went on to explain that even in the most hopeless of situations there is hope; even in the most desperate times you have to keep believing.

Tom and I kept looking at each other as these words were being read out. Maybe this was all a coincidence, maybe the church we happened to stumble on just happened to have a story about bones (where my cancer had spread to) and the Vicar was telling the congregation that we should seek out hope no matter how difficult times get.  After all, without hope you may as well just give up and at that point that’s exactly what we had done; we had accepted that within months I would die.

Looking back to that day I chose to believe that we were meant to hear that sermon. Tom and I were at our lowest but the random hour spent in that church by a beach in Suffolk gave us the first shoots of hope. It was a turning point, a nudge towards a much more positive path…

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The day they wrote me off

Tom and I at the Baftas

I’d like to point out that the following entry is my recollection of events; the consultant involved might have a different view of how things went, but the fact remains that I left that room with no treatment plan and no hope of a future.

My mum had come down to London for the results. The smiling consultant called us in.  The smile soon evaporated.  “The scans show there is cancer in the pelvis.” The cancer was back and no one could ever take those words back or the consequences of what that meant. Tears pricked my eyes but I stayed calm, I knew that the spread of breast cancer to the bone wasn’t an immediate death sentence; I’d read of women living for twenty years with this type of disease. You can’t die of bone cancer, but it does mean it’s more likely to spread to organs in your body.

The consultant said it would be up to me if I wanted to try chemo and I’d need scans to see where else the cancer had spread.  I looked over at Tom – it was as if someone had punched him in the gut. He was stunned, lost for words, before stuttering “What’s Ellie’s prognosis?”

I wasn’t even thinking about timescales until the consultant said, “We don’t like to give timescales.”

“Well what? Six months? Three months?” I blurted out; I opted for a severely conservative estimate so she could reply ‘more like five years’.  Instead she replied in a low voice, “more than three months.”

She can’t even give me six months.  Fuck. Our plans and hopes were being viciously wiped out – like paint being manically thrown over a mural – with each bit of news she gave our future together was disappearing, desecrated by cancer.

I wanted out of this room.  I wanted to be held by Tom.  There was a mixture of shock and in a strange way, relief.  The fear of ‘will it come back’ had been realised.  It was back, and according to the doctor the prognosis was bad.  No more worrying about the ‘ifs’ and how it might feel, it was happening and in a perverse way I felt relief.

The consultant prescribed five days of palliative radiotherapy to my pelvis to help with the pain and hopefully the limp.  I would also be given an IV of Zometa, a drug that would strengthen my bones.

I wanted to call people – I felt a need to let my loved ones know what was happening.  No two people’s reactions were the same.  Some didn’t believe it, automatically going into denial, “I know it’ll be fine, I just have a feeling – you’re going to be okay.”  There was an, “I’m so sorry”, and many “I love yous.”

Tom and I decided to go away for the weekend, escape London and the confines of the flat.  Tom couldn’t eat and I couldn’t sleep. We’d be sitting across from each other at a restaurant and we’d start to break down.  We walked along beautiful beaches in Suffolk and I made him promise he would be able to cope without me.

The idea of dying didn’t really scare me. I knew the process of becoming weaker and losing weight as the cancer takes over would be an horrific one but for that weekend, in the wake of the initial shock, it was the thought of Tom in the flat by himself.  Coming home and sitting down to dinner alone, no one to meet him with a cuddle when he came through the door and to talk over the day with.  Strangely, it was the thought of my clothes having to be cleared out that really got to me, an empty wardrobe that would taunt him.  It was these visions in my mind that were breaking my heart and would lead to impromptu tears. I called friends to make them promise to me they’d look out for him when I was gone. I asked my mum to make sure she would clear out my belongings and not leave it up to Tom.  I was planning for my death and the thought of leaving Tom was, and still is, utterly unbearable.

On the Sunday morning, waking up in a cosy Suffolk hotel I instinctively reached for my chest, just above the line where I’d had radiotherapy. I felt a lump and then another. Shit. Where did these come from?  More cancer, the doctor must be right; this disease is fierce, it’s everywhere and it’s spreading fast.  It felt like such an insult, how could I try to muster any resilience when the disease was mocking me all the way? It was reminding me of who was really in charge.

Guess who’s back?

The day before the Royal Wedding at Westminster Abbey, producing for ITV News

I finished chemo on 30th November 2010. I was elated. I’d done my stint, got through the barbaric treatment and I was ready to rebuild my life.  I’d be taking Tamoxifen for five years, a drug that can stop cancer coming back or spreading.  My cancer was strongly hormone receptive so I was hopeful this drug would keep the cancer at bay.

By March I was ready to go back to work.  I love my job, it sounds cheesy but it’s more than a job, it’s a way of life.  Journalism to a large extent defined who I was.  I would happily talk careers to new acquaintances, the, ‘what do you do?’ question was never dreaded.  I’d worked hard to get where I was and I loved what I did.

At the end of March I went back at ITV News working for three or four days each week. On some shifts I was a field producer at Westminster, interviewing politicians, helping political correspondents gather material for the evening or ten o’clock news. I felt lucky on every journey to work, riding on the bus over Lambeth Bridge with a view of the Houses of Parliament. This is where I work! I get to see history happen.

By the 27th of May I’d be giving up work once again.  My few months of a normal life, working, meeting friends in the pub, behaving like a normal 28 year old, would come to a sharp and cruel end; the cancer was back.

I’d been complaining about a pain in my lower back since January. It wasn’t there all the time, only when I went running; I was certain it wouldn’t be anything serious.  The mere fact that I’d been practically bed bound for five months and now I was up and running around suggested I’d just overdone it.  But I’m a sensible girl (if not occasionally neurotic!) and I took myself off to my consultant. A bone scan was ordered and something showed up, a slight ‘hotspot’ in my pelvis area.

“We don’t think it’s anything to worry about,” the registrar reassured me, but an x-ray was ordered just in case.  The thing about a cancer diagnosis is, it never ever leaves you. As I lay on the bed to be given the x-ray the fear hit me, my chest tightened.  On the simple act of lying on a bed I felt the tears coming to my eyes, a painless procedure but with gargantuan consequences.

Were my bones being eaten away by cancer? Was the pain the weakening and fracturing of the bones as an army of disease attacked?  Or was it a simple muscle strain and the x-ray would reveal clean, strong and bright white bones free of any deadly dark spots.

The results, to my utter relief, were the latter.  No bone cancer for me.  I scolded myself for being such a worrier, all the scans that I initially had before chemo had come back clear so I’d be pretty unlucky if the cancer had managed to grow just a few months after finishing a course of chemo that poisoned me half to death.

Even though I could carry on as normal, feeling grateful for every day, at the forefront of my mind I always knew that every morning when I got up and felt well there was someone out there going through chemo. They’d be waking up, looking at their clock and wishing the day was already over, praying for the sickness to end, pulling at a clump of hair and amazed that it could fall out with such ease.

The pain went away for a while; I really had been worried about nothing. Then in early April I noticed it again. This time there was shooting pain down the inside of my left leg. I told my consultant again. “Is the pain there all the time?”

“No.”

“Then it’s unlikely it’s cancer.  The scans were clean, keep an eye on it, see how you go.”

You don’t challenge it because it’s what you want to hear. I want to be told it’s nothing so I take those answers and grab them with both hands and head for the door.  The doctor says I’m fine so I must be.

Then it becomes difficult to walk, I’m hobbling around and limping. I go and see the registrar. It sounds like sciatica, let’s order an MRI to be sure.  In the meantime Google becomes my best friend, typing the same thing in over and over again, willing the information to fit what I want to read.  ‘Symptoms of bone cancer’ – a list of ailments, some of which apply to me, some which don’t.

The same goes for ‘symptoms of sciatica’ – another list and I know all too well this process is futile but I can’t help it.  In the early days of diagnosis I called this habit of Googling grim stats and survival rates as cancer porn.  I knew I shouldn’t be looking at it but I couldn’t help it.  It did me no good and got me nowhere.

Something shows up on the scan. The doctors don’t know what it is but they need to do another MRI.  I’m driving and I pull over and my heart sinks. How can this be?  I dial Tom and I tell him, trying to recount the conversation word for word; was there any hint in the doctor’s voice that it was cancer? What exactly did she say? What did she know but wasn’t telling me?

I’m tearful and full of worry, the kind of worry that tightens your chest. I spend the weekend shopping. As shallow as that sounds it was a very real distraction. We had the Baftas on Sunday night; Tom was up for an award for producing a comedy show.  We had a fantastic night, despite Tom’s show not winning.  We drank too much, danced (despite the pain of my leg) but when we got home in the early hours the threat of the returning cancer tapped me on the shoulder and I burst into tears, the cocktail of anxiety and alcohol churning in my stomach as I sobbed over the toilet bowl.

Monday morning brought the grim reality of the MRI scan, then a week of waiting.

The first time round

I have to begin this entry with a confession, I’ve never understood why people keep blogs. In fact, I’ve always kind of looked at ‘bloggers’ with disdain; what makes you so important that you think people will even bother to read it? But I suppose I had that attitude because I didn’t have anything to say. Well, now I do.  I didn’t want to start this relationship off on the wrong foot, I don’t want anyone accusing me of being a hypocrite before I can get in there first and say. ‘You’re right!”  Now we’ve cleared that up, let the blog begin.

Since I was forced to give up work I find myself incredibly bored.  It sounds odd but I relished the long hours, quick thinking and stresses of broadcast journalism; there was never a dull day.  Now I find myself forced to make the day worthwhile all by myself.  Of course I’m full of good intentions, I could start up yoga, taking advantage of all the museums and art galleries London has to offer.  Unfortunately, I’m prone to lazy behaviour and have been wasting what precious time I have watching the Wright Stuff and repeats of Come Dine With Me! It sounds ridiculous I know.

Being told you have months left to live at the age of 28 and you sit around your flat like it’s the school holidays and it’s a treat to watch daytime TV.  My excuse is that I don’t believe that I only have months to live and so the need to see the world, educate myself on arts and history and generally live an enlightened life isn’t so urgent.  Call it denial if you like, but I think it’s what will help me survive and if it keeps me from feeling sorry for myself and helps me get up in the morning and carry on with the life so many take for granted then denial doesn’t seem like such a negative word.

My initial cancer diagnosis came on May 10th 2010.  What followed in the weeks after was the news that the cancer was grade three (the worst kind); after a mastectomy with immediate reconstruction I was told there was 9cm of DCIS – cancer cells in situ – and several invasive tumours, the biggest being 4cm.

Chemo was ordered and for the next five months I’d be blasted.  My hair fell out, my eyelashes and eyebrows gradually thinned to nothing leaving me with a face I didn’t recognise.  Every three weeks I’d let nurses put poison in my veins and thank them and smile at them for doing so.  I’d be ill for around ten days and then I’d have ten of feeling ok before a vein would have to be found again and the process would be repeated.

A week before my final chemo, the one I’d been gearing up for since the start of the hideous process I was told the implant I had would have to come out.  I’d been complaining for weeks of pain and bruising on the reconstructed breast but was sent away by busy surgeons.  They tried to take some of the saline out of the implant to relieve the pressure, but what should have been an easy procedure proved too difficult.  Something had gone wrong with the implant but I was sent away with no answers; one of the surgeons even told me to rub Savlon into the bruise.

Eventually, I was seen by a female surgeon who told me the bruised skin was in fact dying, there was no circulation to it. If only Savlon was the answer!  I was rushed into emergency surgery three days before my final chemo.  Lying in that hospital bed, bald, sore and anaemic from the blood I’d lost during the operation I hit a new low.  I was angry at the doctors for sending me away so many times, angry at myself for being the person that wants to be liked, that smiles and says thank you when you’re ushered away without a resolution to your problem.  Why didn’t I kick up a fuss, why should I have had to?

My most vivid memory of that weekend though is being in and out of sleep and my partner Tom always being there when I came to.  Looking back at that weekend I remember the feelings of love and gratitude I felt towards him.  Tom sat beside me and hugged me and loved me.  In one of my darkest moments I was being shown the depths of love and kindness that another human being was capable of and I felt so lucky to have him in my life.

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