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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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.