written off

We fast forward through the sleepless nights, worry-filled afternoons and ‘what if’ conversations to the day of the scan results. Tom and I sat in the waiting room filled with fear, although our ways of dealing with this feeling were quite different; I was chanting, ‘I’m fit, I’m well, the cancer is in remission’ over and over in my head. Tom was playing Angry Birds!

To add to our angst we were told there was at least a thirty-minute wait. It felt like waiting for school exam results. I had been putting in the extra work; diet, yoga, meditation, knocking back the green shit.  I desperately wanted to believe it would be okay, but having sat in that room many times before only to be told something horrible it was hard not to think the worst.

After an hour and five minutes we were called in. Current Consultant seemed cheery and as we sat down she began to ask me about my hands and feet.  Capecitabine, the chemo I’m on, can give you what is called hand and foot syndrome. I had developed this unfortunate side effect over the past few weeks but at that point it was the last thing on my mind, and brushing this line of questioning aside I blurted out, “What about the scan results?”

We’d waited over an hour – it was like being given your A-levels on a piece of paper but being told you can only look at them if you wear a blindfold.

“Oh yes, they’re good,” she said with a smile on her face.

I turned and looked at Tom, relief filling every fibre of my body. I asked if the tumours were shrinking or had just stabilised. We waited impatiently as Current Consultant tippy-tapped on her computer before reading out the results. She explained that before I’d started on Capecitabine the biggest tumour in my liver was 27mm.

No one had told me this before and I was shocked. I’m sure I’d been told they were pretty small tumours, but to my mind 2.7 cms is a pretty big wodge of evil.  Despite this, the shock was soon overridden by a feeling of utter happiness.  After this second CT scan the biggest tumour in my liver was now 1.1cm. Insert loud, joyful, girly, glass shattering scream here.

This particular bastard of a tumour had been more than halved! Take that, cancer! I like to think that it’s not just the chemotherapy. I’m playing my part and so are others too. All those prayers said, all the messages of hope and positivity sent to me via this blog, I’m always so grateful for them but never more so than when I was told that the cancer was still responding to treatment and the results were better than I could have imagined. All that goodwill was kicking the shit out of the cancer.

“There are also signs of sclerosis in your bones, meaning that the bones where the cancer was found are healing and growing stronger.” As one of my best friends remarked when I later told him this news, “So the Valley of Dry Bones story is right, literally!” Whether by a higher being or medical science, or perhaps both, life was being breathed back into my dying and decaying bones.

That weekend Tom and I went away to Brighton as carefree as we could, knowing that cancer is swimming around in my body. The only hiccup was emergency work on the track, causing us to have to get off one train, catch a bus and pick up another train to continue our journey.

“There’s nothing worse than a rail replacement bus,” I said to Tom as we stood obediently in the queue waiting for said bus.

“Nothing?” Tom asked, grinning.

“Nothing.” I smirked back. “Except maybe Angry Birds.”

The good news meant we could have a fun weekend in Brighton

I’d like to start this entry with an apology. I’ve been a bit slack regarding the blog this week.  I did have a post ready to go up on Thursday but events since then have caused me to put that one on the back burner and replace it with this one.  You’ll understand why as you read on.

A couple of Wednesdays ago I was due for another CT scan, to get a close-up look at what the devious bastard was getting up to after five cycles of Capecitabine. Was the chemo still working or did I need to swap to a different kind of cancer-busting medicine?

I’d arranged to meet my friend Chrissa at the tube nearest to the hospital.  It was good to have a friend there to distract me, especially when it came to the five or so attempts to get a cannula in my chemo-ravaged veins. As the dye was injected into me I began using the breathing techniques I’d recently learned in meditation classes.  In my multi-pronged assault on the cancer I’d also taken up yoga and begun to use visualisation techniques.

At night before I fall asleep I’ll visualise with each breath I take that white blood cells are surrounding the cancer, and with each exhalation that the tumours are then squashed, the white blood cells squeezing life out of them. It might sound like hippie nonsense but there are plenty of survivors who swear by the positive effects of each of these techniques. Plus, well I’ve got cancer haven’t I?  I can try what the hell I like in order to get better!

The scan was over in five or so minutes. The nurse removed the cannula and I walked out to meet Chrissa. As we turned our backs on the ward and started to leave the waiting room a woman called out, “Excuse me, excuse me.” As I turned around the stranger reached out and touched my arm.  “I have to tell you that I know a woman who was given three months to live. Nine years later she’s still going for check-ups.  A man who was also given just months to live is still here twenty four years later.” There were no introductions, no niceties; this information was simply blurted out.

I was confused; who was this woman? As tears filled my eyes, she continued. “You must keep fighting. Don’t give up.”  I was grateful for this stranger’s encouraging words but at the same time I was thinking that Chrissa must have been blabbing a whole lot in those five minutes that it took for me to get the CT scan. Caught off guard and eager for some breathing space, I thanked her and turned on my heel.  As soon as we were out of earshot I asked Chrissa in an accusing tone, “What did you say to her?”

“Nothing. I was sat with my eyes closed and she asked me if I was okay and I replied that I was fine. That’s all we said to each other”

“But then how did she…” I trailed off as we looked at each other and started giggling nervously.

I would have been happy to retain the mystery surrounding the experience; take it as an intriguing yet comforting sign, but as Chrissa was keen to quiz the stranger nosiness got the better of me and I let her go.

The woman explained that she’d heard Chrissa and I chatting in the waiting room before I went in for my scan.  Neither of us had said anything about my prognosis but we had talked about if we thought there was a heaven –you know the usual light-hearted girly chit chat! The woman had said she had a gift and that Chrissa must tell me to keep on fighting and that she saw me with my husband and children.

I thought about leaving this particular bit of information out of the blog, as since my secondary diagnosis I’d given up on the hope of ever having kids. It’s a heartbreaking reality, but one that you can put into perspective when faced with death. The priority has become salvaging a future with Tom; the other stuff can be dealt with along the way.

It doesn’t matter whether I believe this ‘prediction’ or not, whether this woman really has a ‘gift’ or is a bit crazy.  Her message was one of positivity and who am I, or anyone, to scoff at that.

No matter what the scan results had been that Friday, Tom and I had planned to go to the small Greek island of Lefkas for a week.  A holiday was just what we needed. Tom had been working without a day off for five weeks and I was beginning to feel stronger; my body was getting used to the chemo and the effects of radiotherapy were behind me.

Literally taking the plunge

I longed to swim in the sea and lie in the sunshine; no hospital appointments, no daytime TV, no emails from people wanting to know the latest – just Tom and I and beautiful beaches. Our suitcases were packed and I was planning on leaving cancer at home.

“How much?!” I choked down the phone. Insurance for a week in Greece was going to set me back £300! As soon as you mention the big C to insurance companies they start adding zeros. Going to the states? The figure begins to resemble a telephone number. The whole booking experience is upsetting enough, with a random stranger casually running through their checklist asking, “So, is your case terminal?”

“Well the pessimistic doctors think I’m fucking terminal, yeah. But I don’t, I think I’ll beat it but I guess you’re more interested in what Current Consultant thinks. So yes, I am terminally ill at 28. Anything in your life that’s not working out quite the way you planned it?”

But of course I didn’t say that. My diplomatic middle-class answer came out more like, “Er, well yes, they tell me that’s the case,” and the insurance begrudgingly paid we were off like any other couple.

That’s what is so great about the chemo I’m on; no one can tell I’ve got cancer. My disguise is convincing; energetically sprouting hair and thick, long eyelashes enable me to look like any other 28-year-old woman. My only give-away? Roll my sleeve up and puncture marks and the occasional bruise decorate my arm from endless blood tests.

And now, as they say, for something completely different. The villa was stunning and the views of the beautiful turquoise sea were breathtaking; this was just what we needed. On the second night of the holiday Tom and I returned to the villa after a meal out. As we looked out over our balcony towards the bay we admired the beautifully lit up pool of the neighbouring villa.

“Let’s go down to our pool,” Tom suggested. We wandered down to find our pool lights weren’t working; it was pitch black. I looked up in wonder at the stars; you don’t get that in Brixton. As I looked back down Tom had gone. Then I looked further down and I realised he was on his knee. As one of my best friends often says in a moment where words fail you, ‘Eeeeek!’

I was caught a little off guard. We’d talked about marriage but I didn’t think a proposal would come in the pitch black – we could hardly see each other! “Yes,” I said through tears. A ring was slid onto my finger. ‘It’s massive,’ I thought and then I caught sight of it. A multi-coloured parrot ring with pink, faux diamond eyes. The perfect fit but not quite what I’d imagined.

The ring!

After we had gathered ourselves together and headed back inside Tom explained that he’d wanted to propose by the pool but when we got down there, discovering that the lights were out, he’d already plucked up the courage to ask and went ahead despite the lack of light! The ring was a prop belonging to the flamboyant character Brian Badonde from the TV show Facejacker, which Tom was producing.  We would choose the real ring together when we returned to London.

That night we were once again giving the cancer the V’s. We believed we had a future together and we would face the challenges that lay ahead as a team. One of the nicest parts of that evening was making the calls and sending out the texts to loved ones; for the first time in a while we had good news to share – we loved each other and we were getting married.

Me and Tom

The post-diagnosis routine was coming to an end.  John would return to Australia and Tom had arrived back from America; the baton of care was being passed.  I had been through two cycles of the chemotherapy and my week of radiotherapy was now a month behind me.

My body was growing stronger and days spent on the sofa were becoming fewer.  I was coping with the chemo and the dark thoughts of ‘is this worth it’ were increasingly being eclipsed by my good health.  It’s easy to want to live when you’re well, a little trickier when you’re in pain and suffering.

I’d had a CT scan the week Tom had returned and we were now waiting for the results on the following Friday.  My older sister, Sarah, and her baby bump were visiting from Italy to support me for our meeting with Current Consultant.  Was the chemo working?  If it had been I’d stay on it, if it hadn’t then it would be back to Professor Hope to decide what trials were available.

My hip was still troubling me; it ached at night and I had to rely on the crutch to get around. The radiotherapy didn’t seem to have had much effect and I was beginning to think that I was lumbered with the wretched thing for the rest of my life. It was a constant reminder of the cancer.

I missed playing the games of the daily commute; dodging tube passengers with their deadly draggy-bags, swerving around the tourists standing perplexed in front of the barriers. The Matrix-like moves I used to employ to avoid being shoulder-checked by grey-faced city types seemed to be long behind me.  Now I was the person holding up the stampede of angry Londoners. Never mind all this ‘cancer slows you down and makes you reassess your life’ bollocks – it had literally slowed me down and I was livid! My only consolation was that the crutch doubled as a weapon; ‘The Stick of Justice,’ as my brother and I named it, though as yet it remains unwielded.

Arriving at the hospital I felt fairly calm.  I was almost hoping the chemo wasn’t working; I had a grand plan of being put on a trial and being treated with a new wonder drug that would turn out to be the cure for cancer!  I didn’t want half measures; I wanted a miracle.

But when Current Consultant gave me the news I was flooded with relief; I was responding to the chemo and the tumours were shrinking. Lately the lumps on my chest had been feeling smaller but I almost didn’t believe it. Sometimes you get so lost in bad news you don’t trust your own judgement.

Current Consultant warned me that the Capecitabine wouldn’t work forever but at that moment I didn’t care. I was learning to take each day as it came and this day was a victory; the chemo had bought me more precious time. Sod the ifs and buts, at that moment I felt like I was at the front of the schoolyard scrum joyfully screaming, ‘Fight! Fight! Fight!’ as the cancer got a good old-fashioned kicking.

The two lumps that had appeared on my chest would need to be tested.  Professor Hope wanted to see if the cancer was still hormone receptive or if it had ‘flipped’ and was now triple negative. We were told this occurs in less than 15% of cases and I pushed the team at my current hospital to check the receptor status.

As I lay on the bed being injected with local anaesthetic I heard a snap. Something in the needle had broken and my breast care nurse and I were sprayed with the numbing fluid. I couldn’t feel my cheek. Laid on my side, naked from the waist up with a face like a stroke victim, Jeez Louise, can I not just get a fucking break here?

After four attempts the trainee doctor managed to clip enough of the tumours out to be tested. I wanted those little lumps cut out of me altogether, but what was the point when the cancer had spread so far in my body? It would be like plugging a small hole in a boat full of leaks, and the doctors had made it clear they believed my ship was sinking.

As the nurse bandaged me up I couldn’t stop the tears. Not full-on shoulder shakers, just small drops streaking slowly down my face. I felt so bloody unlucky; there’s only so much prodding and poking and scanning and drug-taking a girl can take. I often find myself trying to rationalise my illness. Was this supposed to happen to me or was it entirely arbitrary? Is it egotistical to think cancer happened to me for a reason? Maybe, but for me it’s easier to deal with something if you can find a logic to it.

When I take my seat in the chemo ward I very rarely see anyone in my age range.  When I spot old women with bald heads I feel sorry for them like anyone else, to have to go through this torture when you’re not at your fittest, when you’re already tired and sapped of energy. And yet part of me can’t help thinking, ‘you’ve made it to this point, you’ve reached your 70s’.  Of course I have no idea what hardships they may have suffered and what their stories are. There are many subplots within the genre of ‘tragedy’ and cancer is merely one of them.

You could argue I’m luckier than some. What about babies born with cancer? Or the teenagers struck down with the disease who haven’t had the chance to move out of home or go to university? Then there is my group, young adults; careers are stolen, the chance of having children wiped out.

Three weeks later we got the results of the biopsy; the cancer had indeed flipped. Surprise, surprise! With less than a 15% chance of it now being triple negative I was once more defying the odds; to get breast cancer in my 20s, for it to spread, for it to turn from one cancer to another. What are the chances? But as I type these words I realise that this is exactly what I want to continue to do, to defy the odds.

In a perverse way the emergence of those lumps had been a blessing. If they hadn’t appeared then we would never have found out that the cancer had changed. We now really know what we are up against. Something that at the time had appeared so awful and frightening had actually turned into a positive. Without those little tumours the doctors would be treating a disease I didn’t have. Thank God for those cancerous tumours, right?!

The discovery that the cancer had ‘flipped’ got me thinking about what appears unlucky and a challenge but turns out to be a nudge in the right direction. If the cancer hadn’t spread to my pelvis and made it difficult for me to walk I would never have been scanned and the small tumours in my lungs and liver would have been allowed to go unnoticed like a silent assassin.  If Current Consultant hadn’t been so off her game on the day she gave us the secondary diagnosis I would never have sought out Professor Hope. If she had been less fatalistic and had suggested a treatment plan I wouldn’t have put in the research that led us to a man who opened up a whole new world of research and possibility. A world that ultimatley may offer me a longer life.

As I empty the green powder into the glass the smell alone turns my stomach. Each swig is accompanied by a specific action that turns the downing of wheatgrass into a kind of ridiculous dance routine. First I hold my nose and take two big gulps, prompting an involuntary, primal cry of revulsion (generally accompanied by the sticking out of my tongue). Next comes a clumsy prancing from one foot to the other whilst shaking my left fist. The final swig is preceded by a silence; I know this will be the worst bit. All the leftover powder thickens the water into a paste and I can feel it sticking in my teeth. Occasionally I’ll retch. I continue to hold my nose and reach for some fruit juice to wash the taste away but it always remains, like the stench from an old person’s foisty slipper!

Everyday I go through this rigmarole and it’s not for show; this little performance takes place with or without an audience.

“You’re so brave in so many ways and then you behave like this!”

While Tom was away my brother John was staying with me. He’d been reading up on cancer preventative diet on the internet and after an expensive trip to Holland and Barrett the cupboards were stocked with linseeds, multi-vitamins, turmeric, green algae tablets, and of course the dreaded wheatgrass, or ‘the green shit’ as we renamed it.

Living together again we reverted back to our old relationship. We share the same sense of humour, me often trying to impress him with some quick remark, him teasing me or the pair of us ganging up on whoever is with us at the time. But in his capacity of big brother he was as stern with me as he was playful; he knew that occasionally I would conveniently forget to down my wheatgrass and every day he would prompt me, “Have you done the green shit?  Have you done the turmeric?  Have you done your chemo?”

I think John’s focus on diet was a way for him to play his part, to try to help in a situation where people ordinarily feel useless. The cancer doesn’t just ‘happen’ to me it happens to all those who are close to me. I’ve never lost someone or had the threat of losing someone very close to me so I simply don’t know what my loved ones are going through. Sometimes I think it’s easier for me than for them, once I’m gone I’m gone, but they’ll have to carry on, feel the pain, pick up the pieces and reassemble their lives.

During the hours I felt unwell my brother would sit with me, watching TV and researching the internet. John could have left to go out and enjoy the sunshine but he never did, he just stayed with me, telling me about all the positive stories he’d been reading about.

After a visit to a research centre I said, “I’d love to be that first person, the person who lives with cancer but doesn’t die from it.” My brother replied, “I think you’ll be disappointed. There already are people doing that.”  There was no sign of defeatism and his confidence bred the same in me.

He took a perverse pleasure in watching me drink the repulsive green shit; it was like entertainment to him. It reminded me of a time when I was about six and he would have been twelve when I’d fallen over in the street and scraped the side of my hip. With no parents around to complain to I found my brother bored in the kitchen and I showed him my bloody graze. “I know what will make it better,” he announced with authority. I remember him opening up the fridge door and reaching for something that I couldn’t quite see.  As I stood waiting, from behind his back he produced a plastic Jif lemon and handed it to me. “Squeeze the juice over it, it’ll take the pain away.” My trusting, six-year-old self followed his advice and predictably, it was agony.

What a little shit! A child psychologist hearing that story wouldn’t recognise the responsible, caring adult who had flown across the world to help look after his younger sister. Twenty years on there were no cruel jokes to be played. My brother was making me drink the wheatgrass and swallow the pills because he wanted me to get better.

My illness had changed our relationship. Like many siblings, for us hugs were always reserved for hellos and goodbyes and even then it would be an awkward stilted embrace. A few days into John’s stay, however, I woke up feeling unwell from the radiotherapy and I must have looked particularly pathetic. He grabbed me for a hug and we stood there holding onto each other in silence, both desperately wishing that this wasn’t happening. The cancer, that is, not the hug.