6) Have a day at the zoo
Really there’s no need to worry. I know that when I haven’t posted anything for a while, some people are concerned that it’s because things are bad. Usually quite the opposite is true. Just like now.
I’ve been busy enjoying life, rather than stuck on the sofa. You’ll see that I’ve done a few more things on my List for Living over the summer.
My treatment finished in January and there no plans for anymore at the moment. It’s now been the longest period of time without any since my diagnosis. It’s a record breaking chemo holiday!
Getting used to normal life isn’t as straightforward as you’d imagine. When you’re ill there is only one priority and that’s survival. Life is put on hold. Everything is geared towards killing the cancer. Nothing else matters. You focus on the chemo and just try to get through each day as best you can. Your emotions are linked to the disease and how successfully it’s having the s*** kicked out of it. The everyday stuff just isn’t important.
But when you finish with the toxic cocktails and the horrible side effects start to fade, you begin to glimpse the kind of life that most people have and many take for granted. You mark this with milestones which are quite frankly ridiculous. When I was having the weekly chemo for many months, I didn’t need to fill my car with petrol once. Now I have to get fuel every so often. I feel lucky each time I fill her up. These are unexpectedly marvellous moments. When you’re used to an abnormal life, normalness can seem strange. There’s no daily battle. You wake up and feel well. That’s such an incredible feeling.
Not everything has been quite so nice. During treatment you’re very much protected. You’re very close to the people you choose to be with. This circle of family and friends love, support and help you. They are very careful about your feelings. They understand more than anyone else how difficult it all is.
When life goes back to normal you’re stop being so cocooned. You see more people than ever before. I look well and I feel brilliant. It must be hard for anyone outside this circle to really appreciate what I’ve been through. I understand this but it can still be a shock when someone comes along and hurts your feelings. Before I was ill I could handle stress and thrived on it. But now it’s much more difficult to cope with. It’s very frustrating as it’s such a waste of time.
However I didn’t have all the horrific treatment in order to only survive. I dealt with each horrible day by dreaming that at some point I may be able to start living again. Only I’d forgotten that with the good but you also get the bad. I assumed that after going through so much, it would be perfect. Of course, real life isn’t like that. So I suppose that I really did get my wish. But there’s no need to worry, there’s so much more good than bad.
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.
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.
10) Snorkel on a coral reef
30) Go coasteering
48) Sail alongside a pod of dolphins at sea
All I wanted to do was go on holiday. To relax and enjoy some sunshine in Oman with my friend Chantal, the flower girl. And thats exactly what I did a few weeks ago. But also I was able to do some things on my List for Living which was an amazing bonus!
Even before we’d arrived I managed to persuade Chantal to come snorkelling with me despite the fact she’s not a fan of boats. She gets bad sea sickness. I promised her it would be fun. But I didn’t realise it would be quite so adventurous. When I’ve done snorkelling before its been pretty easy. You jump into the sea, have a little snorkel about and then get back on the boat. Hahaha this time it was very different.
This was hardcore snorkelling. We swam along the coastline following our guide who was the most incredible swimmer. It was just a shame we weren’t! Up until that week I hadn’t swam for almost two years, for a long time I’d had a PICC line for the chemo which went into my arm and could not get wet because of a risk of infection.
I took my time, slowly drifting over spectacular coral reef, watching colourful fish up close. I found Nemo and millions of his friends. But when I looked up I was always trailing well behind everyone else.
I used to be a really strong swimmer but that was a long time ago. To start with I wondered how I was going to keep up. There was nowhere to rest. As we got further along the coast, I was tired but also surprised that I wasn’t totally knackered. The flippers you wear on your feet helped but it seemed that my body remembered that it liked to go for a long swim.
Towards the end I picked up the pace and got alongside the guide. Not because I was suddenly full of energy, it was mostly out of fear! The sea had become quite rough. I was on one side of the guide, Chantal on the other. She had the same idea. My friend admitted afterwards that by this point she was feeling sea sick in the waves. However just before we were able to get back on the boat, we were rewarded with the wonderful sight of a large turtle. I was so relieved when we finally got back on the boat.
This was snorkelling and coasteering all rolled into one. If I’d had known how tough it was going to be I wouldn’t have signed us up. But I’m so glad we went. Just like other times when I’ve done stuff on my List for Living something special happened – my body came alive in an unexpected but amazing way.
On the journey back to our beach Chantal, understandably, asked if I minded if she didn’t come on any more boat trips.
A few days later I set out on my own. This time I hoped to see dolphins out at sea, something I wanted to do for a long time.
One of my favourite stories that I reported on as the BBC’s correspondent in Ukraine was about military dolphins. The creatures lived at a Ukrainian navy base in the Crimea. During Soviet times this is where dolphins were trained for top secret military operations. When I visited the animals were being used to help children. Youngsters with mental health problems were allowed to swim with them. Ever since then I’ve been fascinated by dolphins and wanted to see them in the wild.
In Oman the boat trip I’d chosen looked good but there was no guarantee. I even had to sign a form to say I realised that I might not get to see any. As we left the harbour, the captain announced that we would see pods of dolphins in a few minutes. Yeah, yeah, yeah, I though to myself. But he was right.
All of a sudden, there was a group of dolphins swimming alongside us. My heart flipped. It was just so magical.
Every time the dolphins leapt out of the water or a new pod appeared, the only sound you could hear was oooohs from the ten or so passengers on board the boat.
My pictures aren’t brilliant as I spent most of the time watching rather than clicking away. The dolphins seemed to play a game of tag with us. They would appear at the side of the boat, swim alongside us then go out in front. Our boat would stop, the dolphins would go on ahead. Then they’d circle back to us. There were several pods, it was hard to know where to look at times.
This was one of the best experiences of my life. I love my List for Living. Without it I might never have seen these incredible creatures in the wild.
Now I’m back at home, I’ve finally got around to updating my List for Living. There were some things that I’m never going to be able to do. I have to be realistic. Run a 5K? These days I couldn’t even walk it. My bucket list is now a bit less adventurous. I’ve replaced some of the more difficult items with equally lovely but far more achieveable things which I’d like to do.
Hello again. I know it’s been a while. I’ve been on holiday. Yes, an actual, proper holiday during my chemo holiday! If you’re not seriously ill then you’ll probably find it hard to appreciate just what a huge deal this is.
For a start planning ahead is hard. I never know how I’m going to how I’m going to feel tomorrow let alone in a few weeks. You have to be relatively well to get on a plane. Your immune system needs to be strong enough to deal with a cabin full of other people’s germs. Then you worry that when you get there you might get ill.
Dreaming of a holiday got me through the last lot of chemo and the worst of the recovery period. I didn’t mind where I went I just wanted somewhere warm with good hospitals.
And it was great. I went to Muscat and Dubai with Chantal, my friend the flower girl. All the photos of our lovely holiday were taken by her.
I was able to forget about all the cancer nonsense. It was hot, relaxing and I didn’t get ill at all. While I was away I was able to tick a few more things of my List for Living! More of that in a later post.
Apart from the holiday I haven’t done too much else. I’ve just been concentrating on recovering.
If you imagine that each course of chemo is like running a marathon. You focus on finishing. It takes all your strength just to get round the course. You want that medal around your neck and a nice hot bath. But each time you cross the finishing line it seems that you barely enough time to catch your breath before you have to run another one. There’s no choice, you have to run to stay alive. Each marathon is harder than the last. That’s why the recover has seemed tougher than ever.
Some of the side effects, like the sickness and the nausea, faded quite quickly. But the fatigue has been worse than ever. The problem is that the chemo made me so ill that I lost what little fitness I had. Anything that doesn’t involve lying down is such an effort.
A few days ago I was talking my coat off. As I took my arm out of the coat sleeve, my arm accidentally slipped out of my cardigan. For a few seconds I felt like I didn’t have enough energy to put my arm into the cardigan sleeve. I did manage it of course. But it’s tiny things which make you realise how far you still have to go.
It’s relentless. You think that you’re making progress and then the next day you’re needing a sleep in the middle of the afternoon. It’s so very frustrating. But finally I am getting better. I’m beginning to feel like myself again and that feels good.
When you have cancer and body goes through such ongoing trauma you need to be mentally strong. To get round the chemo marathons and to keep going during the recovery. Such a big part of coping with this disease is dealing with the difficult thoughts that come with it.
Every few weeks I see a cancer counsellor. It’s an opportunity to talk frankly. The best part is that I can get upset but he doesn’t. It’s kind of like chemo for the nasty thoughts caused by the disease. They are blasted away. Only with this talking treatment I always walk out feeling much better. The counsellor often gives me a new perspective on my problems.
The hardest thing to come to terms with is that my life will be cut short. We were chatting about this during my last session and my counsellor told me that he thinks of me like a butterfly. They might not be alive for long but flutter about and seem to have a great time.
One of my favourite places to sit and rest is in my garden. I watch the birds and occasionally the neighbours cats but I’d never seen a butterfly there before. Since seeing my counsellor I’ve noticed lots of them. It makes me so happy when I see these bright, beautiful creatures. Now they seem to be everywhere.
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.
I know it’s the time of year for New Years resolutions. But I’ve updated my blog with a few things that I did from my List for Living last year. From the sunshine, the lack of hair and the wigs you can tell it was many months ago. Not long afterwards I was back on the chemo and all that vomiting fatigue awfulness. I’m still on the treatment but now it’s just normal horrific. Looking at these pictures and posts makes me so happy. Fabulous memories. Thats what my List for Living is all about.
Tick. Tick. Tick. Tick!
8) Visit Pompeii and drive along the Amalfi coast
It’s funny how one road trip can lead to another. A few years ago I was traveling across Italy with my friend and colleague Sean. We’d just finished a long work trip. As we drove towards Rome, Sean told me all about the beauty of the Amalfi coast. I’d never been there but it sounded so wonderful that I was determined to visit one day. I’d also wanted to go to Pompeii for a long time. To wander through its ancient streets. So I decided to put them together on my List for Living. When my friend Kath saw this she was delighted. This is one of her favourite parts in the world. Many years ago we were flatmates and since then we’ve traveled loads together. Kath has visited me in every single country I’ve lived in, sometime more than once. We’ve had some brilliant adventures around the world! Visiting Pompeii and the Amalfi coast was even more incredible than I imagined. It was one of the best holidays I’ve ever had.
17) Go into space
Yes, I’m really being sent on a mission into space!! I’ve got myself a round trip ride on to the asteroid Bennu. I will be on NASA’s OSIRIS-REx space craft. Okay, I’m not actually becoming an astronaut but my name is going into space!
I’m going to get an intergalactic adventure, sort of, without any of the dangers. My name will soon be up in the solar system with the stars. In tiny little letters, it’s going to be etched onto a microchip which will be taken aboard a spacecraft which is jetting off to the asteroid Bennu.
As far as I’m concerned this means I can tick off number 17 from my List for Living!
It’s not just me going. Last year NASA and The Planetary Society invited anyone to submit their name. Our microchip will travel into space in 2016. The robotic mission will then spend a couple of years there before returning home.
It’s going to be cosmic!