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.

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.

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.

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.

On repeat

My life seems to be stuck on repeat.

Get cancer, have treatment, recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again…

Yes, it’s back. The disease is active once more.

The wonderful drugs I started taking last October as part of a clinical trial, had managed to keep it under control. They shrunk the tumours. These clumps of evil cells are still dormant.

But cancer is clever. It morphs and mutates. It learns how to beat whatever gets thrown at it. So I now have new spots of the cancer near to the shrunken, old tumours. Tiny bits of worrying shadows have shown up on my scans.

My consultant described them as flecks. I think of them as like gold flecks in a beautiful Turkish carpet. When you roll out the carpet, they are so small that you hardly see them but they are there and they change everything.

I’ve stopped taking the no-longer-so-wonder-drugs. Looking on the positive side I am now allowed to eat Seville oranges and grapefruit which had been banned. But, thats it.

I feel weary and frustrated that my body is such a successful cancer making machine. It means yet more toxic treatment. Once again I’m back at hospital and ready for danger. My identity wristband is red in case of an emergency. It should alert medical staff not to give me a drug that almost killed me in the past.

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Today, Wednesday 2nd July, I am having chemo cocktail no 36. Just writing that makes me cry.

You may try to imagine how I’m dealing with all this but don’t. Unless you’ve had far too many cycles of chemo it’s impossible to comprehend what I’m feeling. Mostly I’m fine.  I’ve pretty much come to terms with this. I can cope with writing this blog but as for talking about it, I’d rather not. I mean, what is there left to say? It’s awful.

You might be wondering what you can do or to say to me, or to someone in a similar situation. Here’s a link to a brilliant article you should read.

http://www.telegraph.co.uk/women/womens-life/10832932/What-to-say-to-a-35-year-old-mother-dying-of-cancer.html

The new tumours are very small. They are not causing me pain. This latest development is a cruel blow – another treatment has stopped working however I still have options. I know that my amazing doctors will never give up on me.

My advanced cancer has advanced again but this is not game over. Not by a long way. I am certainly not dying. I am not terminally ill. Worrying about the future is a waste of my precious energy. I just want to enjoy now.

Lets get this new treatment started.

Happy Mothering Sunday

Mothering Sunday, two years ago, it felt like I was barely alive. I was stuck in hospital. But it was thanks to my mum that I wasn’t dead. I don’t think I’ll ever be able to express just how grateful I am to her.

I hadn’t long been out of intensive care. I was rushed there the day after my massive cancer-removing, life-saving operation. While I was recovering from the surgery, I slept pretty much all the time, but suddenly without warning I quietly stopped breathing. It was my mum, who’d been sitting beside my bed, realised that something was badly wrong and raised the alarm. She saved my life. For the second time.

The first time was much less dramatic. A month or so previously I’d had some worrying symptoms. The severe pain had been dismissed by a couple of medical professionals. They’d said it was probably nothing to worry about. My mum wasn’t convinced and made sure that I went for some proper tests. She was right to make me see my consultants. She ensured that I survived.

 

Then…

That Mothering Sunday in hospital in 2012 I felt so incredibly ill. I’d lost a huge amount of weight and could hardly walk. I didn’t realise how frail I was at the time. Mum and dad visited that afternoon. It wasn’t your usual Mothering Sunday. We chatted in the ward’s television room. I got there with the help of a walking frame. For the past couple of weeks I hadn’t been able to sit in a chair without collapsing so for me these were big achievements. We celebrated that I’d made it through the worse.

I’ve been thinking about this recently as I accidentally came across some photos a few days ago from that Mothering Sunday. To be honest I can’t really remember them being taken. My cancer treatment over the past two years seems so much of a blur. Perhaps it’s easier to forget many things. Last Mothering Sunday I was bang in the middle of more chemo.

But this year is so different.

The chemo cocktails are finished. Hopefully it’ll be a long while before I need any more. I don’t feel ill, I feel brilliant. I’m still very tired but I just have to pace myself.

 

…now

I haven’t been able to do too much lately other than concentrate on recovering and getting my normal life back. Plus I’ve been planning a few more things from my List for Living. I’m now settled in my own home in the countryside. I’m very much enjoying number 1 and 2 on my bucket list!

Compared to the past couple of years, I feel so much better. But there is something else that makes this Mothering Sunday so special. While you read this I could well be baking or boiling or maybe burning. This year, for the first time since getting cancer, I’m cooking a family lunch for Mothering Sunday. It’s a very small way of saying thank you. However lunch turns out, this will be a very happy Mothering Sunday.