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.

One 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.

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.

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

I 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!

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.

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.

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.

Happier New Year

This may seem a bit late but pretty much most of Christmas and the New Year has passed me by. There were some lovely moments however far too much of the last few weeks have been a blur of illness, aches and a throat full of the most painful mouth ulcers.

When it gets this bad you have to pause your life. Most of the stuff you want to do just doesn’t happen. You have a constant exhaustion. Meanwhile it seems like everything around you just carries on as normal. Recently there have been some wonderful comments on my blog. Thank you. I’m sorry that I don’t have the energy to reply right now but they’re all read and apperciated.

The three weeks recovery time after chemo no 5 are always the worst because it’s the penultimate load of drugs. The build up of toxic chemicals is horrific. There is no real chance to recover before the final session. Somehow chemo no 6 doesn’t seem quite so awful as you know that the treatment is over. At least for the time being.

So it was on Christmas Eve that I had chemo no 5. This was exactly a year after being told that the disease I’d thought I’d fought off was advanced and would kill me someday soon. What is it about my cancer that ensures I spend Christmas Eve at hospital??

This year there were no mince pies as we waited. It didn’t matter as I’m not allowed to eat on the morning of my chemo anyway. But there was some Christmas cheer on the ward. Especially as my friend Chantal brought along some festive flowers.

I saw the same lovely consultant as the year before. I’ve been her patient for so long. We have shared some Incredible highs….she gave me the all clear from my ever first lot of cancer. And more recently, some terrible lows…on Christmas Eve 2012 she explained that I may only have months to live.

But Christmas Eve 2013 seemed so much more positive. The latest test results were encouraging and showed that the chemo was giving my latest tumour a good kicking. Most importantly I was still alive! Still able to sit in that small, bright room and talk about my future. On the way out I gave my consultant a hug. I thanked her for helping to prolong my life. There’s not many people you can say that to!

It wasn’t great being in hospital at that time of year. But at least we were all able to leave at the end of the day. There was a unique feeling that we had something special waiting for us when the treatment finished. Normally all you have to look forward to is projectile vomiting and a chemo hangover.

Even my bag of drugs had a Christmassy look. As they slipped into my veins I had a dreamless doze under a thin, blue blanket. When I woke up it was time for Christmas.

That night, when we got back, I slept in my own home. I’ve now properly moved to the countryside. Thats no 1 and 2 that I’ve been able to tick off my List for Living! It means I’ve stayed alive long enough to do the most important on my list. As I fell asleep I was happy that this Christmas Eve was much better than the last one.

Chemo no 4

If you’ve never experienced chemotherapy then you should consider yourself incredibly lucky. It is really, truly, one of the worst things I’ve ever had to go through.

I’m now just over half way through my current course of treatment. What makes it so bad is that it builds up in your system. This cumulative effect makes each evil chemo cocktail more horrific than the last one. This stage is also tough because I’m still a while off from finishing.

It seems like ages ago that I had chemo no 4. It’s taken me more than a week to start to feel sort of normal.

My normal is very different these days. It means I feel okay. I’m not stuck in bed. I’m not throwing up. I’m not feeling too emotional. I can walk without too much pain. That’s my new normal.

Despite this I still quite enjoy the actual chemo day itself. As usual I had lovely friends there to help distract me. They came armed with some very thoughtful presents. So Chemo no 4 went quickly.

But within hours, I could feel that the poison was working. This doesn’t usually happen so fast. Over the next few days it got worse. It seemed like I was tumbling into a deep pit of misery. My body and my head hurt so badly. There was intense tiredness and nausea and all sorts of other horribleness. It took four days to hit rock bottom. It was a very dark, bleak place and it took far too long to leave.

Now, I’m out and suddenly it’s almost Christmas. When you go through cancer treatment you kinda dip in and out of life. You lose track of time.

Luckily I have something to remind me about 25^th December. My next session of chemo is on Christmas Eve. It’s not the most festive of things to do. But I’m still here. And this time last year I wasn’t sure that I would be.

Chemo #3

I didn’t realise it at the time but I think that it all started to go wrong with the chocolate milk. The night before my chemo I forgot to have my usual glass of cold, sweet milk. I read somewhere that it helps you prepare for the onslaught of cancer-kicking chemicals. Not sure how much science there is to that but it’s a comforting routine.

It was dark when we set out for the hospital on Tuesday morning. My aunt Judy was driving us. She was a games maker driver for the Olympics so I knew I was in safe hands. But the miserable weather and sloooooow traffic jams seemed determined to conspire against us. Then I remembered about the missed milk. I knew it was going to be one of those days.

When we arrived I noticed that the room on the chemo ward, which was to be my base for many hours ahead, had a stopped clock. That just about summed up how I felt.

If you’re not ill, you may think that its terrible what I’m going though. It is. But I also get to see the other side. At hospital there are many people who are far worse than I am. Clearly it means that there are sometimes emergencies and delays which can’t be predicted. I don’t mind waiting, I’m just relived that its me left sitting there, instead of causing the consultants to come rushing off through the corridors.

I was told that my blood count was really good. It means my body is coping with the savage chemo regime and my immune system is recovering well in-between the sessions. The only problem is with magnesium. As always, it seems, this is far too low and I needed a bag of it via the IV drip. That added on another two and a half hours before the chemo kick-off. And so it went on.

But there was no drama for me, thankfully. Instead I had wonderful friends to entertain me who brought cakes, presents and gossip from the outside world. I feel so very lucky to have the support of lovely family and friends.

And I’ve saved the best for last. I had my first set of test results since the start of my latest lot of toxic cocktails. Big drum roll…..They show that the chemo is working!!!

After just one session of chemo, the tumour marker tests called the CA125, has dropped by a quarter. It’s amazing news and will help me get through all the horrible side effects to come. I’m already half way through my treatment. Just three more to go. Hooray!

Back home after a marathon 11 hours at hospital, I finally got that cold glass of chocolate milk. It was a sweet celebration.

Oh, by the way, happy 100 to me! This is my 100th blog post. I never thought I would do so much blogging. But continuing to blog means that I’m still here and still going strong. Thanks for reading and being there for me.

Chemo-cationed

For the first time in months I woke up without a nose bleed. It’s a sign that my chemo-cation is coming to an end.

It hasn’t been a typical holiday although I’ve mostly just done a whole load of nothing. As I recover from my anti-cancer treatment, the hardest thing to deal with is the tiredness.

It’s been a few weeks since I finished my chemo, since then I’ve mostly slept or sat in a comfy chair but my favourite place to be is outside lying on the grass with the sun on my face. A soft fabric hat protects my thinning hair (more of that later.) Sasha the dog likes to sit next to me. I ask her why when I’ll stop being ridiculously exhausted. She has no answer.

Some of the side effects are easing. So, my moon-face seems to be deflating. But others are actually getting worse. My feet are so swollen that wearing shoes is painful. My toe nails and one finger nail appear like they’ve been dipped in acid.

My eyebrows and eyelashes are growing back but the hair on my head is falling out. And I mean seriously coming out. Towards the end of the chemo cocktail sessions my hair had started to grow. Now that it’s falling out in handfuls it seems so cruel. It’s difficult to stop myself constantly checking but each time I’m rewarded with a load of my hair between my fingers. I reckon that I’m going to need my wigs for longer than I thought.

Compared to what I went through during my treatment, both the hair loss and tiredness seem much harsher. It’s meant that my chemo holiday has been tough however there was one amazing afternoon when I got away from it all.

A couple of weeks ago I went to a Buckingham Palace garden party. As you do! Along with several thousand smartly dressed people, I had afternoon tea with the Queen and the Duke of Edinburgh.

My fug of fatigue was gone, it felt as if I’d woken up and for a few hours I was back to my old self. I think it was down to being part of something so special.

During my chemo-cation I also had a trip to Accident and Emergency. Not quite so pleasant. Last Wednesday I caught an infection and my temperature started to rise. As this happened before I knew not wait too long before going to hospital. When we arrived my temperature was bad but not critical. We sat and waited to be seen by a doctor.

Over the next hour I felt increasingly ill. During that time we were joined on the hard metal seats by five other patients. Separately they hobbled in and bizarrely everyone seemed to have twisted an ankle.

My temperature wandered into the danger zone. I was eventually given a bed in the emergency ward. By that point my blood pressure had dropped and my heart rate was worrying.

After some treatment and a night at the hospital, my immune system was back in charge. After the battering that it has taken recently, I was so pleased that it was able to fight back. It was only when I’d properly woken up that I realised I was staying in yet another room without a view.

I was able to leave hospital the next day but the infection took its toll and made me even more shattered. Ugggh.

Finally, life is now returning to normal and I worked at the weekend. At the end of my shift I felt like I’d done a massive work-out at the gym. I had no energy left. Not just my legs, but also my arms really ached. This was a different kind of tiredness. It comes from deciding that the chemo holiday can’t go on forever and pushing myself to do more.

Considering my diagnosis – this is a luxury. I’ll never beat the cancer but I can enjoy the time when I feel good and I’m not having treatment. I’m more than happy to have this sort of exhaustion as it shows that after 17 sessions of toxic chemicals I’m slowly starting to feel better.

Chemo#16

Could it have been the fabulous weather? Or the fact that my treatment is almost over?

Whatever the reason – I felt great during chemo#16 yesterday.

Yes, all the cancer stuff is terrible of course but not every moment is horrible. Far from it. Before the toxic chemo cocktails started, I had a proper cocktail while sat outside in the sun.

To say I enjoy the treatment would be wrong but most of the time I do enjoy life. Going through all this makes you appreciate the small stuff even more.

Normally my view from the chemo ward is just brick wall. Yesterday I had something new. A different brick wall!

When I realised this, it genuinely made me happy. It really did. From my bed I got to look out at some lovely old red bricks which were a bit higgily piggily rather than the uniform, more modern bricks.

Then again maybe I’m in such a good mood because I’m going to do some amazing things on my List for Living today.

All will be revealed very soon….