The ‘fight’

After long discussions I persuaded Tom he should go to the States for a show he was working on.  He’d already missed out on two weeks out there and it sounded like the team really needed him. He would be away for six weeks and with the prognosis of just months to live it seemed like six weeks could be precious time we were sacrificing, but in my heart I truly believed I had much more than time than just a few months and I knew it would be good for Tom to be forced to concentrate on something else.

My brother John would extend his stay to be with me while Tom was away and mum would come and visit to help look after me while I went through radiotherapy.

The radiotherapy to my pelvis made me really quite sick. The sunny summer days taunted me as I lay on the sofa recovering from being zapped.  The rays would shrink the tumour but they also hit all the organs in that area.  I felt nauseous, I was losing weight and I was getting depressed.

When you’re ill because of cancer treatment it’s hard to remind yourself that it’s not the cancer itself that is making you feel so bad.  You can’t help but weigh up in your mind if it’s all worth it.  You have to balance the illness of treatment with your quality of life.  For anyone going through this struggle I’d have to say that, from my experience, it is better to at least give it a go and stick with it for a decent amount of time to see how you react to the treatment.  You might be really ill on the first cycle of chemo and want to give up, but the second might treat you more kindly and fortunately for me, by the third I was living a relatively normal life.

I’ve read and heard many cancer sufferers say they don’t like the word ‘fight’ when talking about cancer; it’s a cliché.  Maybe it is, but I do see it as a fight.

Acceptance is easier; there’s no waking up at 3am worrying if a treatment will work, if you’ll live to see your wedding day and beyond.  Who wants to be constantly prodded and poked with needles?  To willingly put poison into your body?

When I was feeling particularly sick one day after radiotherapy – and I feel guilty admitting this – it felt reassuring to think, ‘I’m going to die, there’s nothing I can do about it and I can stop all this treatment and give up.’  To remind myself that I had that option was comforting.

To choose to live and to battle takes energy.  Some mornings I look in the mirror, take a deep breath and say to myself, ‘Come on Ellie, keep going.’ Of course ultimately I want to keep going, I really do love and cherish my life too much to give up without, dare I say it, a fight.

Rosy outlook

Professor Hope had arranged for me to visit two research centres that were carrying out Phase I trials.  Phase I drugs have previously been tested in the laboratories but never on humans. Current Consultant had told us I wasn’t eligible for any trials but it turned out there were scores of them, although they were mostly in the very early stages of testing. In Phase 1 researchers are still trying to find out the optimal dose of these new drugs, with the starting dose being very low. This is gradually increased in very small test groups of patients who fulfil the criteria, so if you join an early group the dose is likely to be so low that it won’t make any difference. But when you’ve been given months to live, a shot in the dark is preferable to no shots at all.

The three of us headed off to see the research specialist; me with my limp, John with his positive attitude and Tom, nervous but full of purpose.

Sometimes in life you meet people who seem to have it all; extremely intelligent, good looking and super nice. The lovely doctor we met ticked all three of these boxes. I’ll refer to her on the blog as Dr Rosy because of her rosy disposition.  I warmed to her instantly.  She chatted with us, asked us what we did, told us how we were in good hands with Professor Hope and she thought that someday he would be famous. Dr Rosy explained the risks of a Phase I trial and answered all of our questions.  If the Capecitabine didn’t work she had a trial for me starting in August, which would give me time to try two cycles of the chemotherapy, get scanned and have a three or four week washout period before I started the trial.

It was explained that research into cancer was now taking a different approach. When drugs had previously failed in shrinking tumours they had been tossed aside, but now the scientists were looking at not curing but managing the disease – much like diabetes. This made perfect sense to me.  Aside from the limp I had no ill effects from the cancer living in my bones, liver and lungs. If a drug could be invented just to stop the cancer growing I could live with these tumours, and some of the trials they were running were designed to ‘chop off the legs off’ the cancer cells so they couldn’t spread.

At the end of the meeting a similar feeling to when I’d seen Professor Hope washed over me. I challenge anyone to go to a cancer research centre and not leave completely in awe of the people that work there. God knows how professional footballers or film stars dare to have such egos when people like Dr Rosy and Professor Hope do such genuinely amazing things.

Professor Hope and Dr Rosy had begun the process of rescuing us from the defeatism and despair provoked by the attitudes of the doctors I’d been seeing at my current hospital. They talked about new and exciting findings, of options and possibilities.  There was no mention of timescales.  There was a mind-set of what could be done, not what will happen.

The Whole Truth

“We can also see cancer in your liver and very small spots in your lungs.”

Current Consultant was in Chicago for the ASCO meeting and so were seeing another oncologist at the same hospital. Fuckety fuck. We’d all been so positive since seeing Professor Hope but now, as I was trying to skip down the path sign-posted ‘positivity’ the cancer seemed to be grabbing hold of my arm and yanking me back.

“I know no one wants me to ask this,” I said, avoiding eye contact with Tom and my brother and staring straight at the consultant, “but how will the cancer kill me?  Does it grow so big that it’ll take over my organs?”

“You just become very weak and lose weight. You’ll get weaker and weaker.”

I had a feeling that this was the child-friendly, fairy tale version of death. My experience of cancer sufferers on their deathbeds isn’t of people simply ‘slipping away’; they look like they’ve been slowly tortured, each breath more difficult to take, their previously healthy glow washed out of every pore.

I explained that in my previous appointment Current Consultant couldn’t guarantee me six months. The doctor looked at me, his head tilted at a sympathetic Princess Diana 45-degree angle. I suspected this was his well-practised, ‘you’re totally fucked’ face. “I would have thought it would be more than six months, but we are talking months here, not years.”

He showed us the scans of my lungs and liver and attempted to point out the spots of cancer on the scan. I stared at the screen, nodding knowingly, but the black and white images on the screen meant bugger all to me. I had cancer in my lungs and liver; this was not the time for a biology lesson.

So there we have it, my full diagnosis. Shocked? Still think I can make it past a year?  Because I do, I’m sure of it. I can’t deny that I left that room with my confidence battered, but at that point it would have been harder to lower my hopes. Before the appointment my brother had said it didn’t matter what they said or what bad news we might be given; it was about the solution. They may not have told us what we wanted to hear, but what could we do to fix it? To fix me?

The plan was to start on the IV of bone strengtheners (Zometa) and the Capecitabine chemotherapy tablets. After two cycles or six weeks of the Capecitabine I’d be scanned and we’d decide if continuing with treatment was worth it or whether I should just opt for a trial drug; the latter would be a complete shot in the dark.

The evening after I start taking the chemo I had a terrible sense of déjà vu, the same aches and feelings of nausea which had overwhelmed me the first time around. I couldn’t get out of bed, I was sweating, I wasn’t eating. If this was what my life would become I decided that I may as well give up, stop the tablets and enjoy what time I had left.

Luckily, that assessment proved a tad dramatic as two days later I felt fine! The Zometa had surprised my body and when it was wearing off I was back to ‘normal’ – the chemo was treating me well. In the self-pitying throes of sickness I had told my brother that I might as well hurl myself in front of a tube. Forty-eight hours later, as we sat on the sofa watching The Apprentice he looked over at me chomping on some salt and vinegar Pringles and asked, “still throwing yourself under a train, then?”

“Not just now, I want to see if this prat gets the boot, first…”

Bumps in The Road

Not to spoil the surprise but I’m getting married next year – all the girly details on the proposal will follow, I promise.  Anyway, today I sent off for ‘save the date’ cards.  June 2012.  As it came to clicking the ‘purchase’ I paused, hovering over the button that would deduct the money from my bank account.  A thousand thoughts ran through my head but they all lead to one big question, will I be here for that date?

Three months ago Current Consultant couldn’t even guarantee I’d be around for six months, here I am planning a wedding scheduled for a full 13 months after that prognosis. Taking a deep breath, in an act of defiance I double clicked the mouse and I bought the cards.

A cancer diagnosis in your 20’s gets you thinking about things that you shouldn’t even consider.  It sounds pretty gloomy but often when I’m listening to my iPod a song might come on and I wonder whether it would make a good funeral song. Most women who are planning a wedding would be thinking about possible first dance tracks, but instead, despite myself, my first thought on hearing a slow or moving song is; could this be played at my funeral?

During my morning routine I’ll catch myself looking at how much moisturiser is left in its pot or how heavy the shampoo bottle feels.  Will I need to replenish the products or will they ‘outlive’ me?  It sounds silly really, hardly the most major of concerns; hoping the half tub of body moisturiser won’t be your last.

Then there are the things I think I might miss out on. On holiday recently I spotted a small scar on Tom’s arm that I’d never noticed before, how had I not seen this before?  What else hadn’t I noticed about him? What might I miss out on?

Last night as we were kissing I held his face in my hands and was lost in the moment, but then a cancer rudely interrupts and I think how many kisses do we have left? Is there a predetermined number we won’t get past?

If I die I want nothing more than Tom, my family and my friends to heal and move on but I have to admit something I’m a little ashamed to put into words.  It upsets me to think of my loved ones living on without me; the people I care so much about getting on with life, and me becoming a memory.  It is so incredibly selfish but it hurts to think of being gotten over.

Cancer has forced me to contemplate the consequences of my death at a young age but while I have to process these thoughts and fears, I know that the most important thing is to get on with living.

Bella or Vogue?

In the meeting with Current Oncologist after our frenzy of research I told her I had made an appointment to see Professor Hope on Harley Street. On hearing his name her eyebrows sharpened and she adopted a sceptical expression; her immediate concern was that he would charge us a lot of money, and that he would recommend a drug called Avastin which was as yet unproven and whose cost could run into the thousands. She certainly didn’t seem to be a fan.

I asked for her recommendations for second opinions and she gave me a list of names but said I was unfortunate because the following week was the American Society of Clinical Oncology (ASCO) annual meeting and many oncologists based in London would be in Chicago. It felt as though the progress we were determined to make was being frustrated once again.

Current Oncologist went over the list of questions we had raised in our email. She said that she felt we’d gone away on the previous visit with only the ‘headline news’. No shit. She seemed to think we’d simply blocked out the part where we discussed a treatment plan, which certainly didn’t reflect our recollection of events. Putting aside the urge for recriminations we then discussed a tablet form of chemotherapy called Capecitabine. If I were lucky I would tolerate the drug well, with few side-effects. The big bonus would be that I wouldn’t lose my hair.

My brother John had arrived from Australia and would stay for the next eight weeks while we formulated a plan.  As John, Tom and I sat in the waiting room in Harley Street there was a stark contrast with the central London hospital I’d been attending.  Pristine copies of Vogue and Tatler were scattered on the side tables; no piles of outdated Bellas and Take A Breaks with incomplete crosswords awaited this type of clientele.  I kind of missed those articles about how someone’s obese mother-in-law married her one-legged aunt. Of course anyone can get cancer, rich or poor, but you probably won’t be reading the same magazines.

Meeting Professor Hope for the first time, he shook my hand and told us how sorry he was. Despite his lofty position he seemed a genuinely empathetic person. His initial instincts were that Current Oncologist had put us on the right track with Capecitabine, but wanting to learn about all the options we asked about Avastin, the expensive drug Current Oncologist predicted he would try to ‘sell’ us.

He dismissed it immediately. “I’ll only ask this once, do you have enough money to go private?” “Not really,’ I replied. ‘But we could find the money if we need to.”

“In that case let’s not discuss money again. I’ll see you here and I won’t charge.  Now, let me think.”

He swivelled round in his chair, scratching his head and picking up the phone only to put it down again. He scrolled down his blackberry then tapped it on the desk. We were either watching a very convincing mad man or a genius at work; when you’re in my situation you’re really hoping it’s the latter. “Let’s see if there’s something a bit more funky out there,” he announced. He picked up his mobile and called a colleague who worked in research, explained my situation and arranged for me to go to a centre where they were doing trials on patients who had hormone sensitive cancers that had relapsed despite chemotherapy.

Professor Hope’s plan would be to start me on Capecitabine and in the meantime he’d arrange a couple of meetings with research centres to see if I could get on any trials as a back-up. If the Cape didn’t work there were alternative options out there.

Before we left we arranged to meet Professor Hope again. ‘I can’t do next week as I’m in Chicago,” he said. “But you’re lucky. The meeting next week will give me chance to discuss your case, get some new ideas.”

That kind-of sums up the difference between Current Consultant and Professor Hope. He saw the positive in a situation, he gave me alternatives, avenues to explore, a plan. Current Consultant had given me a death sentence and sent me away: there’s not a lot you can do with that, aside from give up. But with a course of action, with different options available, you have reason to hope and reason to keep going.

Our mindset changed, the world didn’t look pitch black anymore. When the three of us walked out of that building into the sunshine an enormous weight had been lifted. You can’t bottle that feeling. The future wasn’t written; we could yet play our part.

Note to Cancer…

Not over yet

Tom and I returned to London on a mission.  I called the Breast Cancer Care helpline and the nurse who took my call recommended I seek a second opinion. She told me there are women who have been living with secondary breast cancer for years. Then, as if to reinforce the message, that night my brother texted me from Australia; ‘It’s not over yet, let’s get a second opinion.  I’ll be there in a few days.’ Slowly we were recovering from the initial shock and we were now thinking of ways to deal with the damage.

I then posted on the Breast Cancer Care website and the response nurtured those initial shoots of hope I had felt in the church in Suffolk.  There were women who had secondary bone cancer who’d been living for ten years with the disease. For a third time, now by the women on the forum, I was urged to get a second opinion and so Tom and I gathered our strength and began to research the internet, write lists and compile emails.  We worked like my life depended on it.

We found out who the best oncologists were in London and emailed them, emailed their secretaries; even their colleagues.  We wrote a list of questions about treatments that might be available: chemotherapies, Cyberknife, trials and studies. Words and names I’d never heard of offered further hope.

I thought back to what the consultant said – we could try chemo if I wanted to. Wanted to. I’m 28, of course I want to try chemo, I’d try anything to give me more time.  In the days following the consultation I struggled to comprehend why I wasn’t offered a course of action. To this day I still can’t understand what happened in that room.  I run it over and over in my mind; how could I at 28 be written off?  How many other people are told the same thing as me and don’t have the support or will to challenge that verdict?

I’m a person with a partner I love, with friends that I cherish, with a life that in my view is pretty fantastic, but to me it seemed that to the people I was relying on to make me better I was just a hospital number; the treatment didn’t work on that one, she’ll be one of the statistics that doesn’t make it. Is it a funding thing? I guess the NHS has to draw the line somewhere. Sorry, we couldn’t fix her, next please.

Yet amidst all these dark thoughts, our fight back was beginning to yield results. One Professor who had been recommended by a member of the Breast Cancer Care Forum replied to my email immediately. I’d explained my situation and he said he’d be happy to see me, so we made an appointment to see him on Harley Street that week. Insurance wasn’t an option but we were willing to pay to get another opinion. For the sake of the blog I’ll call him Professor Hope.  Meeting him would transform my outlook and I believe ultimately my outcome.

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