Constant chemo

It’s now 5 down and 13 to go. Or in chemo talk, I’m now into cycle 2. (Each cycle lasts 3 weeks.)

Thankfully the sickness has got much easier to deal with than when I last updated my blog. The vomiting has stopped – yay! I now take more tablets, some pre-emptively and it seems to work.

The exhaustion is still pretty bad. At times it’s bearable but it can be unpredictable and overwhelming. Occasionally when I’m doing everyday stuff I feel like I’m going to faint. This tiredness is so frustrating but I’ll take it over the sickness any day.

When you don’t know how shattered you’re going to be it’s hard to plan what you can do. There are the things that you’ve organised up to do ages ago, before the treatment started. You want to be able to carry on as normal but your body often has other ideas. I try to do what I can. I don’t want to miss out on life. I want to enjoy as much as I can and the chemo won’t stop that.

Mostly though my world has shrunk and I spend a lot of time on the sofa. As I’ve done during previous chemos I try to get up around breakfast time. I feels good to be dressed and have make-up on these days. Mentally I feel like this is very important. It’s much better to be out of bed during the day and I know this will also help my recovery.

IMG_1547One of the other nasty side effects is that I’m now getting a really bad taste in my mouth. It’s worst around the days when I’ve just had chemo. Fizzy sweets seem to help as does chewing gum and drinking tea. It’s hard to describe but it’s kind of metallic which makes sense as some of the drugs are based on platinum.

The steroids have again affected what I want to eat. They demand I eat crisps every single day. I crave fatty tastes and crunchy food. The steroids make me so very hungry. I wake up ravenous in the middle of the night. It’s like a painful ache and it’s like I haven’t eaten for days when it’s only been a few hours. However as I’m too tired to get up I just put up with the pain.

I’m getting more used to carrying around my chemo bottle. I hardly notice the bumbag. Now the sickness is under control I don’t look at it and feel nauseous. But it’s awkward and the thought that this is a continuous chemo cocktail which basically lasts for 5 months is quite freaky.

This course of chemo is hard but the main thing is that I now know I can cope with it.

Chemo no 61

It’s been such a horrible shock remembering just how bad chemo can be. I suppose it’s been so long since the last lot that I’d conveniently forgotten. Otherwise I might not have agreed to have more.

I’ve just been so tired and dizzy from the anti-cancer drugs. It’s been like a never ending hangover. And this is just the start. There are many, many weeks to go.

For this treatment I have a chemo cocktail once a week and then I have a bottle of the stuff to go home with. The container is attached to me. I never thought this part would be so very hard.

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The bottle has a clever mechanism pumps the drug into my body continuously. It’s the size of a small bottle of water and it has to come with me everywhere and I mean everywhere. I was given a bag at hospital (below) to carry the bottle around my waist but it’s not brilliant and quite uncomfortable.

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My friend Lynne suggested that I ditch this for a 80s bum bag and thats what I’ve gone with! Well almost, the one I using doesn’t look too retro. It’s actually a running belt and seems to work much better.

Now that I’m feeling incredibly exhausted most of the time, having to carry around this bottle of toxic liquid makes things even worse. It’s so frustrating. It’s also a constant reminder that I’m on chemo. That’s something which I really want to forget.

Chemo no 60

IMG_1324I found it hard to believe that this was my 60th chemo cocktail. As you can imagine I was dreading it. I was well aware of how horrific the next few days and months will be.

I had a bit of a wobble the night before but I actually felt great as I sat in the hospital chair waiting for my toxic fix.

I realised that doing something you’ve done so many times before has it advantages. You know what to expect and how to prepare. And most importantly I had Luke to hold my hand.

It was such a long day at hospital. Endless hours of being attached to a drip. For anyone interested I’m having two chemotherapy drugs – Cisplatin and 5FU. Plus the usual fluids, magnesium, and steroids.

Oh yes the steroids. I’d forgotten how wonderful they are. After a few of hours I was on a steroid high. It felt almost like a drunken daze. It certainly makes the chemo cocktail easier to take. So what else is a drunken girl going to do? Take selfies in the toilet of course!

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That drunken daze stayed for the rest of the session. Maybe it was the drugs but I felt happy to be having treatment. While I dislike chemo. I hate even more the sense that my cancer is growing again. I want to be in control. As my friend Kevin put it, I’m now building up my chemo-cation airmiles.

When the drips were done, the chemo hadn’t finished. I had to take home a bottle of the 5FU drug. It’s attached to me via tube into the port thats in my chest. I’m now on a constant portable drip. It means this drug will be going into me 24/7. The bottle is attached to a belt around my wait. You could say that its my new hip flask.

I’ve no idea how I’m going to feel. I had the first drug many years before and it was fine. But I’ve never had the second drug or been on a continuous drip. I’ve been told to expect to be exhausted. A couple of days on I feel quite rough. I woke up on the first morning after with what felt like a hangover. I suppose that was only to be expected.

Since my last blog post I’ve had lots of lovely comments. Thanks ever so much. They mean so much to me and help to keep me going.

Thats the first one done, I’m so glad to get that under my belt without any big drama. Just 17 to go.

End of the chemo-cation

Here we go again. My lovely long chemo holiday is over. It’s been an incredible 14 months without any nasty drugs. It’s been one of my best years ever. While the cancer stayed dormant I got my life back and it was extraordinary. Often it was as if I didn’t even have the disease.

After each treatment you always hope that it will go away forever. Even when you know that it’s very unlikely to happen. The longer you go without needing chemo, the more you hope for the impossible. You dare to dream that you could be the exception.

But a couple of months ago the pain and the blood tests started to tell me a different story. That the cancer was growing inside me again.

It’s such a harsh blow. I know this is was expected and I realise that I had a much bigger chemo holiday than predicted but it doesn’t make it any earlier to accept.

However the good news is that because I’ve had so long without any chemo cocktails my body is in much better shape than it has been for a while. In the past I’ve gone from one load to toxic drugs to another without much chance to recover. While I still feel exhausted much of the time, my body should be able to cope well with whats to come.

This week I start treatment and in total it will be my 60th chemo! Over the next 5 months I will get 18 blasts of the stuff. I dread the side effects but I need the cancer killing drugs to live longer and to hopefully have many more lovely chemo-cations.

Normalness 

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

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.

No 10, 30 and 48 on the List for Living!

10) Snorkel on a coral reef

30) Go coasteering 

48) Sail alongside a pod of dolphins at sea

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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.

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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.

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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.

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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.

Chemo holiday holiday!

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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.

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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.

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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.

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Chemo holiday!

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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.

Christmas cheer

I blame Christmas. Thats why there hasn’t been a blog from me for ages. The chemo is still really tiring but when I’m feeling well, the best thing in the world is just enjoying doing ordinary stuff. I’ve even made my own Christmas pudding vodka!

Xmas vodka!

Okay, it’s not just Christmas thats got in the way. I also had an emergency stay in hospital. A little while ago I suddenly became very ill in the middle of the night. It wasn’t long after a session of chemo. I had hours of severe pain and then I started vomiting. Sorry this is another blog post about being sick!

I couldn’t even get out of bed. Instead I was using the plastic bin in my bedroom. I’d actually bought it thinking that one day it may have an alternative use.

As I’ve had so much of this, I knew it was different this time. This was something much worse that the normal awful. Speaking to one of my consultants on the phone it was clear I would have to go into A and E. The moment when being ill turns into an unexpected hospital visit is scary. You get used to coping with being poorly but when you need proper medical help, it turns the situation into something much more stressful.

30 hours later and I was still vomiting. By this point the only thing coming out was bile. I was too ill to sit up in my uncomfortable hospital bed. Moving made things worse. Instead I was lying on my side, resting my head on a cardboard sick bowl, in place of a pillow. When I needed to throw up I just had to turn my face into the bowl. This is genius, I thought to myself, as I filled another bowl.

Genius??? It was only a few days afterwards when I’d stopped vomiting that I realised just how bad I must have been to think something like that. Drips and drugs helped me to improve. My parents brought in some of my post so I managed to make my stack of sick bowls look a little bit festive.

Christmas cheer

Almost a week later and I was out of hospital. No one was quite sure what exactly made me so ill but it wasn’t anything serious thankfully. As a veteran of getting bad news, I can’t tell you just how relived I was.

The problem was probably something to do with my stomach lining becoming inflamed. Apparently the correct medical term for my horrific sickness is that it was….”just one of those things.” Excellent.

Since getting out of hospital, I’ve had another dose of chemo and I’m fine. I managed to make the Christmas pudding vodka above. It wasn’t that which put me in hospital!

I have all the usual nonsense that goes with chemo of course. But that’s alright. That’s more than alright. I’m alive and feeling (relatively) well. I’m so looking forward to celebrating another Christmas with the people I love.