Knockout?

I’m very happy to say that my cancer is having an identity crisis. It might sound strange but when you have this stupid disease you see it as more than just a collection of killer cells. It has its own unique character. You personify it.

When I was diagnosed last March, I thought of my tumour as a party crasher. After all it had turned up uninvited. He (and it always is a he, although I’m not sure why) was dirty, dishevelled and no friend of mine.

I worked hard to get rid of this party crasher who was still there the next day. I imagined him as someone festering on the sofa, feet up and swigging on the dregs of the night before. He wore flip flops but the soles of his feet are filthy. He only went after months of treatment.

Then, on Christmas Eve, I found out that he’d come back and he was much more menacing. There’s no chance of showing it the door for good.

This is a kamikaze disease. When you think about it, cancer makes no sense. By killing me, it will also destroying itself. So, I imagined my tumour to be a suicide bomber. Wearing a khaki coloured vest stuffed with explosives, he also carried a hand grenade for good measure.

When I thought about my cancer this time, he was primed and ready with his deadly cargo, getting bolder by the day. I saw it as something very dangerous. Yet the only weapon left was chemotherapy.

This was never going to get rid of the cancer. The best case scenario would have been to wipe out the tumour completely or shrink it. The worst case scenario would have been for the cancer to not respond to the drugs at all.

Now it’s over and I’ve had tests to establish how the treatment has worked. Disappointingly, it hasn’t gone quite as well as I’d hoped. The tumour is still there, it’s not gone away. However there is some good news. It hasn’t got any bigger and it has changed. For the moment it’s stable.

It means that my cancer has a new identity. The bomber has become a boxer. Not a very successful one at that. My boxer, with his red satin shorts and a sweat on, has been floored by the toxic drugs. He’s on the mat and the referee is counting out loud.

My boxer may be down but he’s not out. He will get up and fight again. Each time he does I’ll be ready. I have top consultants in my corner. They have some new treatment for me to try – something that really packs a punch.

But until the boxer wakes up I’m on my chemo holiday.

Back for good

These are the words I never ever wanted to write again. I have cancer AGAIN.

When I first started this blog last March I wrote something very similar. Back then there was hope. I went on to have so much horrendous treatment. I really thought that I’d killed the cancer. Now it turns out that the cancer will kill me.

This is the third time I’ve been diagnosed with the disease. I have advanced cancer, the kind you can never get rid of. All I can now is try to destroy each tumour every time I get one. I’m not terminally ill but I will die a lot sooner than I ever imagined.

The crazy thing is that I feel so well and yet I might be dead by the summer.

The worst case scenario is that I have six months to live. So little time. I’ve been told that it’s a good idea to ‘get my affairs in order’. That’s such a hateful phrase. I’ve started to write my will and think about my funeral. You may be finding this hard to read, I’m finding it almost impossible to comprehend that this is actually happening. It’s unbelievable. This is the most difficult thing I’ve ever had to deal with.

Can it really be months?? I’m an optimistic person and I just don’t think so. I reckon it’s better to believe that I have ages left to live and be proved wrong, than think I don’t have long and be proved right.

Even so, I have to be realistic. I probably only have a few years left to live. Most likely I can expect five years. Maybe ten or more if I’m very lucky.

As you can imagine I’m utterly devastated. I feel upset, angry, emotional, sad…..it’s just so unfair. I cry so often especially when I break the news to someone. It’s all so traumatic. At times it seems like my head is going to explode as I have so many thoughts swirling around. Right now, the world seems pretty meaningless and irrelevant. Nothing really matters.

It was all so different a few weeks ago. I celebrated my D Day. It was 11 years since the first time I was diagnosed. A big happy cancer-versary to me. To be honest, I didn’t really celebrate too much as the next day I had a check-up with my consultant, The Professor. It was a scheduled appointment, three months after my last one.

“Any symptoms, any pain?” The Professor asked as I sat down in the bare white room.

“Well, some. A little pain near my scars from the operations,” I casually replied not sure whether it was serious enough to mention it.

“Right, you need a scan straight away.” He didn’t need to tell me anything else. The way he looked at me said it all.

And that was it. The moment my life changed forever.

It was at that very second I realised the stupid cancer had returned. I desperately wanted to take my words back. I tried to persuade The Professor that the pain wasn’t really that bad. I’d only had it occasionally at night for a couple of weeks.

“No matter what you say, you need a scan, you won’t convince me otherwise,” the consultant told me firmly.

Of course I had that scan. As I waited for the results, I was overwhelmed by worry. I’ve never been more frightened.

A few days later it was Christmas Eve and I was back at the hospital for the results. The nursing sister brought round a plate of homemade mince pies but it just made the grim atmosphere seem even worse. Only the urgent cases were being seen. Why else have an appointment on this day of the year?

Just as I feared the cancer had come back. Or maybe it never really went away. The tumour is tiny. Just 9mm. It’s so small, I could barely see it when I was shown the scan. Precisely 11 years and 1 day after being told I first had cancer, I have it again in exactly the same spot.

What I felt was likely to have been the tumour growing inside me. With ovarian cancer you normally don’t get any obvious symptoms. That’s why most women die from the disease. It’s incredible that for the third time in a row, my body had told me about a tumour.

This shocking news is still just sinking in. I’ve had a few weeks to start to come to terms with it but it doesn’t seem real. Next Tuesday though the reality will hit me. I start another round of chemotherapy.

My hair will fall out; I’ll get sick and be so incredibly tired. But my time is limited. I can’t afford to put on my life on hold any longer. I want to carry on as normal as much as I can. I’m still going to work, and plan to drink the odd cheeky vodka and flirt with unsuitable men. Maybe not all at the same time!

When I had cancer the first time I came up with my List for Living. It was a five year plan of things I always wanted to do. Thanks to the list I became a BBC foreign correspondent and had the most amazing adventure abroad. Now that the cancer is back for good I’m so glad that I followed my dreams.

I’ve been writing a book about my List for Living. I want to get the book published so doing that will be going on my new list. Every day I have more Ideas about what else I want to do before I die. Some people have asked me if there is anything they can do. Once I’ve come up with my new list, you could always help me with something on that.

I want to have fun and enjoy my last few months/years. Especially as chemo will now be a part of my life forever. It will keep me alive. The aim is to shrink the tumour and all its friends that follow. I will have an evil chemo cocktail every week for 18 weeks in the very same hospital as before.

It’s a case of here we go again. It’s so frustrating after all I’ve been through. With this stage of cancer my treatment options are limited. There are only a few types of drugs that can help me. This is terrible, terrible news but it could be worse. I could be terminally ill.

I know how I’m probably going to die and roughly when it’ll happen. It’s weird having a likely expiration date. I really hope my Best Before is at least 2023. But you know it’s not the years in your life that matter; it’s the life in your years.

Once I have my affairs in order I’m not going to dwell on the dying, I will soon have a new list and a whole lot more living to do.

Olympic victory

Yes I made it!

Not long after my last session of chemo I actually got to see the Olympics. I still can’t quite believe it.

The day before I’d been shattered. I wondered if I could even make the journey across London. But there was no choice. I wanted to go so I had to feel well. After months worrying about tumours, rogue cells and being so agonisingly ill, it was great to focus on something totally unconnected to cancer.

Mum and I had tickets for basketball but our first event of the day was show jumping at Greenwich Park.

 

To get to the venue we did it like David Beckham and sped along the Thames by boat.

I have to admit I was nervous about the day ahead. I hadn’t done anything requiring this much effort for such a long time. Despite being determined not to be beaten by the chemo, I knew I was going to have to take it easy. But this wasn’t about what I couldn’t do; it was about enjoying a glimpse of normal life and how things will be when I’m all recovered.

Because of this I thought there was no better time than to wear a wig for real. Say hello to Raquel! This is a Raquel Welsh wig and so it becomes my Raquel. It was quite surreal suddenly going blonde.

The Olympic day was planned like a military operation. I’d slept as much as I could since chemo. I’d organised my medicine so that I was taking the max pain killers at the right time on the Sunday. Most importantly mum had hired me a wheelchair.

 

There was a torrential downpour as the morning session of the show jumping started but it didn’t matter. I’d managed to get to the games. It was an amazing feeling to be part of the Olympics.

For Team GB it was the beginning of an historic gold medal winning performance. I was also finding it quite tiring. Plus the super strong tablets had left me drowsy. As the final horses finished I had a sleep in my wheelchair. I was very grateful for that chair. There was no way I could have managed without it.

It had been mum’s idea to get the wheelchair even though it meant that she had to push me. I thought that we might only manage the morning. Mum had had other ideas and we headed for the Olympic Park. Luckily she’s very fit and when we had a clear stretch of pavements we whizzed along. If there were people walking the same way as us, mum enjoyed overtaking them.

It was definitely fun but shocking too. It made me understand just how much of an impact the cancer, surgery and chemo have had. Thankfully I know that I’ll recover.

Spending all day in the wheelchair also left me stunned. It was as if some people had never seen a wheelchair before. As we tried to navigate busy areas, some just starred and stood in the way. When we needed help few people offered any assistance.

The people working at the games however were brilliant. At the Olympic Park we were given a lift on a golf buggy. The wheelchair was strapped to the back. Our driver tooted his horn and shouted, “Team GB on board” as we made our way through the crowds.

The last time I was there was back in January. I was reporting live for BBC News on the start of the Olympic year. Just a few days before I had symptoms that made me think that something could be wrong. So much has happened since then but it’s almost all over. I’m so glad that I made it. This feels like I’ve come full circle.

Incredibly we managed to stay to the end of the evening session of basketball. I was knackered, of course and in some pain but delighted. This was good pain, the kind that you get from doing too much. It’s taken days of sleep to recover.

Since the opening of London 2012 I’ve been watching Team GB with so much pride. Now the Olympics has helped me to achieve something that was way beyond my expectations and I feel very proud of myself too.

I choose life …

When I came into hospital I thought I had already made that big decision. Do I want to do whatever it takes to save my life? My answer was yes. Of course. What I didn’t realise was that I would have to make that choice again.

On the day of my operation, I wasn’t supposed to be first on the list for surgery but someone else was late. With a pink dressing gown over my NHS hospital gown I rushed to the end of the ward to join some of my medical team.We walked briskly to the operating theatre along a confusing set of corridors. Early morning light streamed through square 1950’s style windows across sage green floor tiles.

As we chatted, I glanced out at the hospital grounds. It didn’t occur to me that this would be the last time I would be able to walk for a more than a week.

The adrenalin rush reminded me of work, when as a reporter you’re sent to a breaking story. There’s a buzz of not quite knowing what’s next. Plus I was feeling excited to be finally, hopefully, getting rid of the cancer.

The op, I was told, would be several hours long. Maybe five hours at the most. So I was prepared for it to be awful. My team were looking for the pea while this princess was well asleep. Sadly they found a whole lot more than just a tiny tumour. They discovered some of his bigger and nastier friends plus plenty of his little mates too. So much for the pea theory. As it was such a big op I was in theatre for pretty much the whole day.

But (and how I like these buts), they got it all out. The surgery was a success thanks to my brilliant team (and I’m not just saying that because I know some of them are reading my blog!). All the cancer has now been removed.

Amazing news. But physically I felt awful. That night was bad and the next day not much better. The pain was harsh but all that mattered was that they’d got the cancer and mum was at my bedside. Now surely the worst was over.

That morning I was given a load of painkillers and easily dozed off. This was a dangerous sleep that I was drifting into.

At some point I started to dream about a group of people. I could hear their voices in the distance. It was like they were in another room. Slowly I began to work out what they were saying. It took a while to realise that this group of people were actually talking to me.

“Can you hear us Helen?” They seemed to ask.

Yes of course I can hear you all, I thought to myself and ignored them.

“Helen, open your eyes.”

I was totally unaware that anything was wrong. I just felt relaxed and happy in a bubble of unconsciousness.

There was also a male automated voice. It was saying something like, if the patient doesn’t respond, start CPR. The computerised voice sounded angry. I couldn’t understand why I was hearing this. Or what the fuss was about. On and on all the voices kept talking to me.

So I opened my eyes.

And in doing so, I chose to live.

It turned out that I had stopped breathing because of a bad reaction to the painkillers. Apparently my body started convulsing and the emergency crash team was called.

That’s how I ended up in intensive care.

I was hooked up to a bank of machines. These computers didn’t talk. Instead they bleeped. Now I was petrified of both sleeping and the monitors.

I was told that the drugs which had caused me to become unconscious would take a while to leave my body. Every time a sound went off I thought I had stopped breathing.

Almost delirious from exhaustion, that night I was haunted by hallucination-like dreams during the scraps of sleep I managed to get. Every five minutes that passed felt like two hours.

My bed faced away from the windows. It was hard to tell what time of day it was. Intensive care  was a bright white environment with large fluorescent lights in the ceiling. I knew it was eventually morning when there was a shift change.

It was the worst night of the my life. But it was over.

Despite feeling incredibly ill, I was determined that now my recovery would start.

It was tough. I could hardly move, small things like a nurse washing my face would leave me shattered and I found it difficult to focus my eyes on anything for long.

Ever so slowly and painfully I improved until that amazing moment when I was considered well enough for the toast.

Finally, a week after the op I was allowed to leave intensive care.

As my bed was pushed towards a normal ward it felt like we we were doing a victory lap of the hospital. When we came to the corridor with the square 1950s windows full of light, I was so happy that I cried.

Everyday since then I’ve been gradually getting better. It’s taken a long time but finally I feel like me again.

I’m an optimistic person anyway, but after the past couple of weeks I appreciate even more than ever just how precious life is.