written off

For the past three weeks I’ve been getting increasingly troublesome headaches, and last week’s were joyfully accompanied by vomiting in the morning.  Whenever an ache or pain strikes I am reminded of the fragility of my situation, and at times denial seems like a better option than assuming the worst, so rather than bring forward my first NHS appointment with Professor Hope I decided to grimace and bear them.

Last Thursday, however, the headaches were getting so bad that they were impossible to ignore.  I had some liquid morphine left over from the time it was prescribed to alleviate my hip pain, and that seemed to be the only thing that would even touch the sides.

One night, after maybe a spoonful too many of the morphine, I was watching the West Wing with Tom in the living room when I spotted  a mouse scuttling across the kitchen floor.  After the obligatory scream, I stood on the couch urging Tom to ram a broom under the fridge where said mouse had scampered behind.  “Maybe you’ve overdone the morphine, love,” Tom suggested, when the wily rodent refused to emerge.

I was convinced I’d seen this mouse, albeit out of the corner of my eye, but with CJ getting death threats and President Bartlet having to foil a terror plot the rodent investigation would have to be postponed until the next day. The mouse was lucky this wasn’t one of those tedious, preachy West Wing episodes or the hunt would have continued long into the night.

The Friday before the appointment I felt really quite unwell so I emailed Professor Hope to give him a ‘heads-up’ on the state of my, er, head. This is one of the many great things about The Prof; he is happy for me to email him directly and although I don’t like to abuse this I know he will return my email almost immediately. This type of relationship was unthinkable with my old consultant.

I was convinced that the headaches were a tumour growing in my head. I’d never had this type of pain and coupled with the nausea they were classic signs that the cancer had yet again spread.  Of course, there were still arguments to suggest it might not be that; the other tumours were shrinking, so why should it be growing there? Or maybe the new pains were a side effect of the build up of all the drugs I’d been taking. But after being burned on previous occasions no amount of reasoning could ease our concerns.  We’d been there before with the sciatica that turned out to be cancer in my pelvis, and so another psychological approach was taken.  “Whatever it is, we will deal with it.”

We saw Professor Hope on the Monday and he immediately ordered CT scans on my brain and body.  He called the radiologist and asked him to get me in that day. If I’d been at the old hospital I would still be waiting for those scans, of that I am sure.  We were still within the NHS but this felt like very different treatment – there was a definite sense of urgency.

By Friday a new appointment was given and despite the Professor being away I was seen by his colleague who told me that some small spots had shown up on the CT scan of my head, including a 6mm tumour at the back of my brain.

I was going to say that I don’t expect different treatment because of my age but do you know what? I do. I’m 28 and have not even lived half of my years going by the ‘average’ life expectancy.  At the old hospital it was a case of ‘we’ll fit you in when we can’; here it was very different. Professor Hope had spoken to the radiology department even though he wasn’t at work and I was being booked in on Monday to be measured up for radiotherapy.

I didn’t cry when the news was given – Tom and I had strong suspicions what this was.  It has to be said that the more knockdowns you get the more adjusted you get to dealing with them.  The time period for tears and ‘it’s not fairs’ and ‘why us?’ seems to shorten with every blow as we somehow adapt to the new shitty situation.

Am I thinking about dying more often?  Yes I am. Do Tom and I hug each other every ten minutes and tell each other how much we love one another? Of course. I think the best way to sum how I’m feeling at the moment is if I share with you an email I sent to my brother on the evening we got the news.

Despite these shitty developments I know the question most of you will be asking yourselves is, “But Ellie, what about the mouse? Don’t leave us hanging until the next entry.” As if I would!  The mouse appears to have been a figment of my drug-fuelled imagination – it hasn’t been spotted again. Either that or the furry fella didn’t fancy sharing a flat with two soppy fools who can’t help saying ‘I love you’ whenever they pass in the hallway.

I first found the lump in my breast eighteen months ago in the shower. It was a Monday morning and I remember coming across something while washing under my arm. I say ‘something’ because to call it a lump wouldn’t really be accurate, it was more of an area of thickening. I had never made a point of checking my breasts (unless you can call giving them a once over in the mirror ‘checking’ – believe me I had good boobs!) so I guess you could say I was lucky to discover something was wrong.

Being super fit and healthy I hadn’t joined a GP surgery since moving to London from the North East. I knew this change in my breast needed checking out but in my mind it was nothing serious, just a box to tick to get the news it was just a cyst. Having no GP I went to a drop in centre, and as I sat on the bed the nurse told me she couldn’t feel anything. “It’s here,” I said, clutching my left breast.

“Well, let’s do this properly then, lie down.”

“Let’s do this properly? Really? Do we have to? God, you’re a real stickler for the rules, lady.”

Typing this now I can’t believe a health professional actually said that to me.  On further examination the nurse concluded she could feel something but told me that it was probably hormonal and that I should go and see my GP if it hadn’t gone by the end of my next period, three whole weeks away.

Strangely enough this woman didn’t fill me with confidence so I went to register at my local GP’s surgery. However, despite this practice being the nearest one to my flat, the receptionist informed me that my street was on the wrong side of the road to be able to join. When I explained that the NHS website had stated that I was eligible to become a patient there she left her seat, I assumed, to get the relevant forms for me to fill in. Instead she returned with a map and a highlighter pen. She then went on to expertly colour in the road where the boundary was.

“I really need an appointment.” I pleaded, conscious of the queue building up behind me.

“What’s wrong with you?” she asked, apparently considering cutting through the red tape if faced with a serious enough complaint. Tears started to fill in my eyes and my throat contracted as I felt obliged to air my private concerns in front of the eight people now waiting.

“I’ve found a lump in my breast.”

“Well you can’t join here,” came the reply, “you’ll have to find somewhere else.”

Apparently a possible case of breast cancer was deemed not significant enough to bend the boundary rules, so off I went to joining a GP’s surgery that was further away from my flat but devoid of a highlighter-wielding Nazi. The GP was a lovely bloke and got me straight to the one-stop clinic at a hospital where within a few hours I was diagnosed with breast cancer at the grand old age of 27. Boos all round.

Anyhoo, my point is that despite the vast amounts spent publicising breast cancer, young women with the disease are frequently misdiagnosed or fobbed off simply due to their youth. The other day I met up with the remarkable Kris Hallenga, founder of breast cancer charity CoppaFeel, who had an even more shocking experience of this kind of prejudice.

In 2008 Kris, then 22, went to her GP with a lump in her breast. She had a family history of breast cancer, but the doctor told her she was fine and that the lump was probably down to her being on the pill. Six months on and the lump had gotten bigger. Kris returned to her GP’s surgery, this time seeing another doctor. This particularly helpful chap told Kris he didn’t need to examine her because she’d been examined six months ago.

Kris’ mum insisted that she be referred to hospital and a biopsy showed she did indeed have breast cancer. A subsequent bone scan showed a tumour on her spine, meaning that Kris had secondary cancer and that it was incurable. She will never know if the cancer spread in those eight months that she waited to be referred.

When I tell friends I’ve met with Kris their first question is usually along the same lines as my brother’s immediate response on hearing her story. ‘Did she sue the fuck out of them?”

And the answer is no.

“I didn’t pursue any legal routes because I didn’t want to waste my time on these two stupid doctors. I wanted them to hear about my successes and how well I was doing in newspapers and TV when I’d managed to get the charity off the ground. That way I could reach lots of people instead of making two doctors bitter and angry, who hopefully regret that day for the rest of their lives anyway. And I wanted to take a positive approach and pursuing legal stuff is not exciting or fun!”

Kris could have ploughed her energy into a long, drawn out legal case, and let’s face it who could have blamed her for doing so? But instead she set up CoppaFeel, a charity aimed at 18-30 year-olds whose slogan is ‘knowing your boobs can save your life.’ Kris is doing what her doctors should have done and ensuring that young women are smart about their health. Who knows, she’s probably saving lives.

How many of us have found ourselves in a situation where someone has wronged us and we want revenge? Now, how many of us can say we took that shitty situation and turned it into a positive?

As you can tell from the blog I have been somewhat hung up on the two doctors who gave me months to live. I hope to learn from Kris and let go of the ‘whys’ and ‘what ifs’ just get on with living the best life possible.

Check out CoppaFeel! here

I have to start this week’s entry with a huge thank you. I have been overwhelmed and humbled by the amount of people who have been visiting the blog lately. It’s due partly to a Grazia article and partly to a Facebook and Twitter campaign initiated by lovely friends and supported by lovely strangers.

When an email pops into my inbox to alert me to a new comment it’s like opening a gift; I have no idea what it’ll say, but the surprise almost always turns out to be a good one; more TOWIE box set than socks! (The former being a very good thing, by the way…)

My years of working in TV news may have hardened me slightly to the world; a relentless procession of horror stories giving the impression that the majority of our planet is made up of murderers, paedophiles and dodgy politicians. Then I find myself in a position where the opportunity for kindness presents itself far more readily and my own personal newsflash makes me realise that there are so many compassionate and considerate people all over the shop – or reading my blog at least.

By the same token I can’t help but be influenced by all of this generosity of spirit. At the risk of being perceived as both sentimental and worthy, a life threatening illness has got me thinking about who I am, how I treat people and what I want to be remembered for.

When you’re surrounded by kindness it’s hard not to give it back. I could write a huge list of all the thoughtful things friends have done for me since cancer came a-knocking; sending me flowers when I’ve been feeling down, bringing food round when I was too ill to cook, cutting my hair short when it was all falling out.

We have an 88-year-old neighbour called George, whose wife of 65 years passed away a year ago. He has no family so at least once a week I’ll go and sit with him for an hour just to have a chat. The other day I saw an elderly lady at the station looking confused as she stared at the tube map. I asked her if she was ok and directed her to the platform she needed; before cancer I’m pretty certain I would have rushed on by, caught up in my own concerns.

Don’t get me wrong; I’m not trying to claim I’ve become Mother Teresa; it has just given me more opportunity to reflect on the way we treat each other. Some people instinctively have this caring gene; one particular friend is the kindest person I have ever met – he volunteers to mentor young people, gets involved with his local community and is just so full of loveliness I wonder how he does it.

Then there’s the kindness of strangers; a beauty editor who stumbled across my blog sent me a bag full of expensive make-up; one of my dad’s friends who I’ve never met sent me a pendant that he would hold while praying for me – now I wear it every day; a church group that my mum’s husband’s parents are part of say prayers for me every week. These are people I have never even spoken to.

And finally there’s the camaraderie of fellow cancer sufferers. The knowing smile that you exchange with the bald woman in the hospital pharmacy who for some reason senses you know exactly what she’s going through. The resounding cheer from a room of five nameless chemo patients when on the fifth attempt the nurse finally inserts the cannula into your hard-to-find vein.

There’s so much goodness out there and sometimes we forget that. I’m just a bit pissed off it took me getting cancer to really realise it!

“We must treat people not the individual diseases.  I am living proof of what is possible” Lance Armstrong.

I’ve been reading a book called ‘Love, Medicine and Miracles’ – sounds a bit cheesy I know but it got me thinking about statistics, life expectancy and the role doctors play in a patient’s health.

I don’t mean to give Current Oncologist a hard time. While I can’t forget the fatalistic way she told me how long I have to live, handing a secondary cancer diagnosis to a 28-year-old must be an awful experience and possibly on that day she just didn’t handle the situation very well.

A different oncologist at the same hospital also diagnosed me with months to live rather than years. Maybe they’ll be proved right, but it seems a very demoralising thing to tell someone when they could be wrong. It’s an incredibly difficult balance to strike for a doctor.  A patient must be fully aware of the seriousness of their illness but should that be spelt out by giving a time frame?  I wonder if a doctor would bet their own life on their prediction being right?

Current Consultant couldn’t give me six months in that initial meeting –four and a half months down the line I’m responding to chemo and feeling and looking well. In ‘Love Medicine and Miracles’ Bernie Siegel says that, “The physician’s habitual prognosis of how much time a patient has left is a terrible mistake.  It’s a self-fulfilling prophecy.  People who are passive and who like their doctors often die right on schedule, as though to prove them right.”

The fact is, no one knows how long I have left or how the cancer I have will develop.  I’ve never had this disease before so the doctors have to rely on statistics. If you are told you have a certain amount of time and accept that; stop making plans for the future and cease looking forward to tomorrow then what kind of message is that sending to your body?

Professor Hope told me that he has known people with the extent of cancer I have who survive for years on the chemo I’m on, then switch to another chemo for years, and then if I stop responding to either of those I can try a trial. That’s a very different scenario to the doctors at my current hospital.

A couple of weeks ago I saw a psychologist at a cancer support centre in Hammersmith called Maggie’s (more on this amazing place in a future blog). I told him I had started yoga and was meditating, almost apologising for what some might see as naive optimism. “I know it’s all pie in the sky stuff, but I feel it’s helping.”

He corrected me immediately, “It’s not pie in the sky. Studies have shown that yoga and meditation can help improve the quality of life for cancer patients.”

I warmed to him and his open-minded approach. He explained that of course there are exceptions to the rule – that to get to any statistic you need extremes of one end of the scale to the other; there was nothing to stop me from being at the ‘fuck you, cancer’ end of the scale.

I can’t explain how grateful I was for a professional to tell me that I have the right to feel optimistic about my outcome.  He appreciated that I had enough intelligence to realise the severity of my situation – just because he told me I could outlive the statistical expectation didn’t mean I would take that as a foregone conclusion.

I told him how let down I’d felt by the negativity from my current hospital and he asked me if I thought I would benefit from a change of doctors. When I think about why I hadn’t done this when I initially sought a second opinion I realise it was because of fear, and to some extent laziness; getting to grips with new hospital staff, new surroundings, different days for appointments.

I’ve now decided to take that leap and change hospital. This week I signed up to Professor Hope’s NHS surgery. I don’t want to be another statistic and don’t intend on being treated like one.