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.

No 27 on the List for Living!

27) Fly a kite

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I really loved doing this as a child and wanted to experience it again as an adult. When I was younger the kites we flew were often made of bin liners!

However this time I had something much more special. There was no homemade contraption as my fiancée Luke has a stunt kite.

We set off on a beautiful wintery day, cold and clear, but we were not sure if it was blowy enough. We drove to spot thats popular with kite flyers.

But by the time we reached the higher ground, it was clear that there was more than enough wind.

 

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I held onto the strings and when Luke threw the kite into the air, it easily caught the breeze and soared into the sky. It felt almost supernatural, like the kite was alive.

I didn’t realise it would be quite so breath taking. It was incredible. What a wonderful thing to do from my List for Living.

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Don’t mind the gap year


There’s something missing. It’s winter, Christmas isn’t far away and I’m feeling really well. But there is a huge chemo shaped hole in my life.

I’m not complaining. It’s just so strange. I associate chilly weather with chemotherapy. Of having to wrap up warm to make the regular journeys to hospital. Coming home in the cold, feeling dazed and drugged up. It’s hard to remember a time when I wasn’t having treatment at this time of the year. When I started the last lot of chemo I was given wallet sized medical cards. I was told to have them with me at all times in case of a medical emergency. I no longer need to carry these. 

I thought I would have a chemo-holiday over the summer, then just like the past couple of years, I would be back on a toxic drip by the autumn. But I’m still on holiday! 

I reckon that the very earliest I will have more chemo will be January. It will mean that I have had a WHOLE YEAR without any treatment. This has now become my chemo gap year.

My cancer is considered to be stable. The disease hasn’t disappeared but it’s not doing much at the moment. Imagine this…. when I was first diagnosed my cancer was like a sports car. It had the ability to spread fast with little warning. Conventional treatment managed to stop it for a while but the engine was still revving away. Then last year I went on a clinical trial. This chemo has traded in my cancer. It’s gone from the sports car to a second hand banger. So thanks once again to these wonderful people.

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

As this has been my longest period without chemo cocktails I feel amazing. Yes I still get tired and somedays I have to cancel plans just to lie on the sofa. Occasionally I can’t stop being sick. My magnesium levels remain shockingly low. But then I’ve have more than 50 sessions of chemo over the years plus plenty of surgery. You’d expect there to be some problems connected with all the gruelling things which have been done to keep me alive. However it’s nothing at all compared to how horrifically ill I’ve been.

Most of the time I feel really really great. If you’ve never had a serious illness, you’ll find it hard to understand quite how incredible it is to just feel well. Right now I’m lucky enough to have a pretty normal life. More than that, some amazing things have happened during my gap year. I cherish this time and the special people that I’m sharing it with.

No 46 on the List for Living!

46) See puffins in Britain

This was one of the most incredible places I’ve ever been to – the seabird haven of the Farne Islands are just off the stunning coast of Northumberland. During breeding season this is home to around 37 thousand pairs of puffins! On a cold summer’s day we took a boat to Inner Farne. Humans are allowed to walk along designated pathways but the majority of the island is just for birds. There were puffins pretty much everywhere you looked. It was such a special experience.

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No 15 on the List for Living!

15) Bathe in the roof top Bath Spa as the sun goes down

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The pool is up there – on the top of the building! I’d always wanted to go the Bath Spa but never quite got around to it. It was a sunny but chilly afternoon. It was beautiful watching the light fade from the sky as the stream rose from the thermal water.

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