Hope

Hope is one of the most precious things. When you’re diagnosed with cancer, it’s hope that help gets you through. When the cancer becomes advanced and incurable you cling onto that hope.

You hope for clever doctors and you hope for exciting new developments. You hope that the next treatment will do amazing things.

This is the clinical trial that I was part of. I’m proud to have been one of the patients on this new chemo.

http://www.bbc.co.uk/news/uk-wales-32917141

Yes it is remarkable!

It reversed the progress of my disease. Almost six months on from finishing the trial it seems like this chemo has changed the nature of my cancer. Made it less aggressive. It’s now giving me the longest break from treatment since I was told that I had cancer in 2011. Plus it didn’t make my hair didn’t fall out which is a lovely bonus.

To all those involved, thank you so very much.

Chemo holiday!

It’s a Tuesday and normally I’d be having chemo today. Thats been my routine almost every Tuesday since July. I’m at hospital as usual but I’m only having a magnesium drip. No toxic drugs. I’m very happy to say that my treatment has finished!!!

You have no idea how glad I am to be on a chemo holiday. I dreaded each Tuesday more and more. As I traipsed to hospital, I’d often be in a foul mood.

This has been the hardest chemo with chronic vomiting and crippling tiredness. The side effects have been horrific but whats been more difficult to deal with is the relentless nature of going through treatment. At it’s worst, it seemed like there was no end in sight. 

My last treatment was chemo number 59. That’s in total since my first ever toxic cocktail more than a decade ago. It’s a score that I think is horrific and yet somehow impressive at the same time.

For this last treatment I was on a clinical trial. This means it wasn’t one of the standard chemos that’s offered to cancer patients. Part of the reason for the research is to determine the best dose for this new drug. I started off on a high dose and then it was reduced. There is no point of being on a low level of the stuff which does nothing. I was really ill until we found the right dose for me.

This was a phase one clinical trial so I was one of the first group of humans to test the drug. Plenty more patients will take part in trials before it could potentially become available as a standard treatment option. But that could take a while. The whole research process is far far longer than most people realise. 

I feel privileged to have had access to this new drug. It’s exciting to be part of something thats so cutting edge and could help many people in the future. Like a lot of women with ovarian cancer, I’ve become resistant to the most common chemo thats used to treat the disease.

The best thing is that the new treatment has worked. My tumours have shrunk and my cancer is stable. This is the first chemo which has managed to shrink the tumours. There is also a chance that it’s made my clever cancer become more stupid. The result has made all the sickness and exhaustion worth it.

I’m going to make the most of this time. I’ll be ticking some more things off my List for Living. Right now I’m recovering. With the chemo and steroids slowly leaving my body, I’m able to start eating more healthily. I’m also trying to build up my stamina. As someone who often has to sit down to clean my teeth, thats going to take a while.

Hopefully I will now have several months, maybe more before I have to face chemo number 60. Please don’t tell me to be positive and that it might be considerably longer. I’m positive but I’m also pragmatic.

Each time I’ve finished chemo I’ve desperately dreamed that I could have years without needing another toxic cocktail. But my chemo holiday never lasts more than a few months. When you get that news, the disappointment is crushing.

To try to ease some of that next time, I’m prepared for just a short break. I’d like to be proved wrong.

On repeat

My life seems to be stuck on repeat.

Get cancer, have treatment, recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again…

Yes, it’s back. The disease is active once more.

The wonderful drugs I started taking last October as part of a clinical trial, had managed to keep it under control. They shrunk the tumours. These clumps of evil cells are still dormant.

But cancer is clever. It morphs and mutates. It learns how to beat whatever gets thrown at it. So I now have new spots of the cancer near to the shrunken, old tumours. Tiny bits of worrying shadows have shown up on my scans.

My consultant described them as flecks. I think of them as like gold flecks in a beautiful Turkish carpet. When you roll out the carpet, they are so small that you hardly see them but they are there and they change everything.

I’ve stopped taking the no-longer-so-wonder-drugs. Looking on the positive side I am now allowed to eat Seville oranges and grapefruit which had been banned. But, thats it.

I feel weary and frustrated that my body is such a successful cancer making machine. It means yet more toxic treatment. Once again I’m back at hospital and ready for danger. My identity wristband is red in case of an emergency. It should alert medical staff not to give me a drug that almost killed me in the past.

Today, Wednesday 2nd July, I am having chemo cocktail no 36. Just writing that makes me cry.

You may try to imagine how I’m dealing with all this but don’t. Unless you’ve had far too many cycles of chemo it’s impossible to comprehend what I’m feeling. Mostly I’m fine.  I’ve pretty much come to terms with this. I can cope with writing this blog but as for talking about it, I’d rather not. I mean, what is there left to say? It’s awful.

You might be wondering what you can do or to say to me, or to someone in a similar situation. Here’s a link to a brilliant article you should read.

http://www.telegraph.co.uk/women/womens-life/10832932/What-to-say-to-a-35-year-old-mother-dying-of-cancer.html

The new tumours are very small. They are not causing me pain. This latest development is a cruel blow – another treatment has stopped working however I still have options. I know that my amazing doctors will never give up on me.

My advanced cancer has advanced again but this is not game over. Not by a long way. I am certainly not dying. I am not terminally ill. Worrying about the future is a waste of my precious energy. I just want to enjoy now.

Lets get this new treatment started.

Result

I’m back. Finally, for the first time in months I feel much more like me.

The trouble with chemo is that it takes such a long time to recover from. It doesn’t help that by the time I finished, my magnesium levels were almost non-existent. Slowly I’m getting better. I wish that just having the toxic drugs automatically annihilated tumours but it’s not that easy. You could go through all this and it still have no effect.

One of the hardest parts of having cancer is waiting for important test results. It’s like having a really evil lottery ticket. You get automatic entry into the draw. With the right set of numbers, your life could be transformed. You get to have more years on the clock, a renewed sense of hope for the future and a holiday from the chemo.

Before you find out the result it seems that anything is possible. You run though all the lovely things that the good news would bring. It seems so real. Despite the odds, which for this advanced stage of ovarian cancer are bleak, you always dream of winning the jackpot.

What makes this cancer lottery such a nasty game is that being given the wrong set of numbers can only mean more pain, suffering and worse. When it’s bad news, it feels like you were almost within touching distance of something great and it’s been snatched away. When the reality is that you weren’t even close.

So several weeks after finishing chemo I was back at the hospital to find out my magic numbers. It’s at times like this that you’ll find me next to the fish tank. Sitting in a high backed chair with hard wooden arms. The chair is a nasty shade of pink. It’s a colour that is probably supposed to be welcoming to cancery people. When to me all it says is bulk buy and wipe clean.

I am solid block of nerves. Not the excited, adrenalin infused buzz that I get when I’m about to do something scary or go live on TV. But there is a crushing lump of anxiety which fills my body. It makes my breathing short and my brain run slowly.

You wait and wonder about the numbers.

My coat is off and laying across my lap and my bag is by my side. I am more than ready to spring out of my seat when my name is called. The fish tank seat is nearest to the consultants’ rooms.

No news is good news. For those few moments or even hours you are not being told something horrible, which is why I don’t mind the waiting part.

It’s the wondering that I find stressful. It’s as if every cell in my body is on standby. Ready for flight or fight but all you can do is sit. I’m almost frozen with fear. I don’t really want to talk, I can’t eat or drink, I can’t move. The tips of my fingers tingle with nervous energy. Or maybe it’s the chemicals.

You try to think positive but after getting so much bad news you know that hope alone won’t change a thing. You prepare for the worst. My brain is jittery.

Yes or no? Good or bad? Life or death? My consultants don’t mess around. We’ve been through this so many times before. They know that I want the cold, hard facts straight away. It only takes a second to find out. The combination of chemo and clinical trial drugs are working. It’s the right result.

Yes. Good. Life.

All I feel is relief. Not happiness or joy. This pure relief is similar to the sensation you get from quickly drinking a glass of something strong and full of ice, it seems to flood through my body. I relax.

The enormity of the news is only now starting to sink in as I start to feel more like myself. It means I get to live longer. Hopefully years longer. This is amazing!

My cancer is not cured but the disease is dormant once again. No one knows how long it will stay this way. Right now I’m just trying to focus on being the current holder of a winning ticket.