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.

New Year – Old List

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!

No 8 on the List for Living!

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.

 

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No 17 on the List for Living!

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.

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It’s going to be cosmic!

No 9 on the List for Living!

9) Explore the ancient ruins in Rome

Rome is one of the most wonderful cities in the world. I loved it from the first time that I visited as a teenage backpacker. I’ve been back several times and on every single occasion I have somehow managed to fail to go inside the Coliseum or the Roman Forum despite my best efforts. Last year my friends Ruth, Lynne, Lisa, AK and Carolyn helped me to put this right. Although on the first day we didn’t make it! But we tried again. Thank you girls for getting up really, really early so we could beat the queues. It was brilliant to finally see these fantastic sights and tick it off my List for Living however it was even better to have a trip away with special friends.

 

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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!

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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.

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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.

Pains and needles

Here’s a tip. If you’re at hospital, about to have a medical procedure and someone asks you what your pain threshold is…..be careful what you say. As I found out, this question means that what’s going to happen next will hurt. A lot. And it involves needles.

I never used to be too bothered about needles. But the pain seems to get worse and worse as times goes on.

When the cancer came back almost three years, I had chemo through a vein in my hand. Each time a new needle would have to be used for the treatment and then taken out when it was finished.

The problem is that the more chemo you have, the harder it is to find a vein. They vanish from the surface of your skin. If I was one of my chemo veins I’d do a disappearing act too. It gets really painful hunting down a vein that can be used. Sometimes they even seem to dry up as soon as the needle goes in.

Then I graduated to a PICC line. Much easier. There is a small operation but after that there are no needles. The PICC line is basically a clear plastic tube which goes into your upper arm, it travels up a vein which ends up in the chest. There’s a short part of the line which sticks out of your arm and thats where the chemo goes into.

However my experimental drug seems to keep blocking the PICC line so I needed something more serious to enable me to continue with the chemo. It was time to say hello to the port. Or to give it the proper name – the port system for continuos vascular access.

The port is small device which is put under the skin in the upper chest on the right hand side. A tube is attached to the port and goes into a vein. The tube does a semi circle and ends kinda above the heart. Everything is buried under the skin. As you can’t see a thing, I was even given a wristband to wear in case of an emergency so paramedics would know I had a port.

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You may be wondering you do you get the chemo into the tube? This is the gruesome bit. Basically every week a nurse has to stab your chest with a needle, go through the skin and into the port. Uggggh. At least the awful sickness and tiredness that I’ve having for months have eased up a bit.

So back to the question about my pain threshold. I was sat in a flimsy hospital gown waiting to go into the operating theatre with my friend Sally when I was asked about it. The procedure was explained and it didn’t seem too bad. I said I could handle quite a lot of pain. Haha big mistake.

Inside the operating theatre I was prepared for surgery. An orange liquid was spread over my right shoulder and chest to make it sterile. The stuff was cold, it stank and it was being rubbed into my skin, really hard. I must have looked upset as a nurse asked what was wrong. I could only reply “all of it.” I didn’t want to be there. I didn’t want to be cut open. I didn’t want any of this. How do you explain all that when you feel so emotional that you can hardly talk?

Thankfully I was given some sedative. To get this port under my skin in the first place I needed a local anaesthetic. The first needle hurt, as did the second and the third and then I stopped counting. It was clear very quickly that I needed some painkiller after all.

My eyes were firmly shut to stop the tears so I couldn’t see the nurse who took my hand. Such a kind, compassionate gesture. She told me to squeeze her hand when I felt pain. The needles were bad but it was even worse when the anaesthetic had to be firmly massaged into my body. Finally the medication kicked in and the squeezing could stop.

It was only 11am by the time I became the proud owner of a new port. It felt like enough had already happened for one day. But I still had the weekly dose of chemo to go. Just to illustrate the seriousness of the op, I wasn’t allowed to walk instead I had to be wheeled to the ward on a hospital trolley.

The rest of the day was fine. Just a normal, horrible day at hospital.

Things picked up on the way home. While waiting for the train home, we were randomly offered some free cocktails. I wasn’t sure if I was allowed any alcohol straight after treatment but after what had happened, I just didn’t really care. We said yes. It was the best cocktail I’d ever had on a chemo day!

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Sickness and in health

The last few months have been some of the worst of my life. I’ve never ever been so ill for such a long period. I started my current chemotherapy in July and it’s been horrific. I’ve had plenty of this kind of toxic treatment before. Almost 50 sessions when I last counted. But this weekly chemo is by far the hardest to cope with.

Imagine what it’s like to wake up with a bad hangover and the flu, pretty much every day. That has been my life for almost four months now.

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The tiredness has been chronic. There have been days when walking from one room to the next has been almost impossible. I’ve clocked up some serious sofa time. Lying down of course, as sitting up is too exhausting. I often feel really dizzy when I do stand up. Even just bending down makes me feel faint. Most of the time, reading or looking at a computer is too much effort. Yet despite not doing anything all day, I still need a huge amount of sleep at night. Bad days feel incredibly bleak. The never ending fatigue is debilitating.

And so too is the sickness. Mostly it’s just nausea. Ha, I say just nausea, but it’s ridiculous. (It’s perhaps best not to read on if you are feeling a bit queazy.) Generally I have about three days a week of actually being sick. Here’s how I cope: I lie on the sofa, take a variety of tablets and stare at the TV trying not to think about it. Willing myself not to throw up. I concentrate on the screen and the sickness seems to pass eventually. This doesn’t always work. Sometimes it’s best to get it over with. It doesn’t hurt that much but these days I always seem to have tears rolling down my face as I vomit. It’s not that I’m particularly upset so I’m not sure why it makes me cry.

This nausea taints so much of my daily life. I have a long list of food and drink that I can’t bear. Most of the nausea is associated with hospital visits. It reaches a peak a couple of days before chemo. Just thinking about my treatment can send me rushing to the bathroom. A few weeks ago, a friend who was coming to chemo with me sent me a text. We were arranging where to meet. But just reading the text made me throw up!

Must of the time I haven’t been able to eat much, which is no bad thing, although not eating doesn’t stop me being sick. It’s a strange sensation when it’s just cold water that comes out. But thats much better than bile. I often wake up early in the morning and my first thought is that I’m going to be sick NOW and before I can say to myself, you’ve got to be kidding, it’s started again.

I should explain that this is not a standard chemo, I’m on a clinical trial. The weekly infusion only takes 15 mins and as it slips into my veins I get the taste of almonds in the back of my throat. Something else for my banned food list. This is experimental stuff and so it’s taken a while to establish the right dose for me. My chemo cocktail has been reduced a couple of times. This has eased the symptoms, a bit. It means more sitting on the sofa and less lying down. It’s still really tough though and I have many more weeks to go.

But there are a couple of things which are getting me through all the horribleness and make it all worthwhile. My tumours are shrinking and I am happy to still be alive.