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.

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.

Spoonfulness

Wow it’s been a while. So hello again!

I haven’t been writing for the past few weeks or so as I’ve just been incredibly tired. I’m still short of magnesium. Stupid, stupid magnesium. Ever since January when chemo ended I’ve been having a weekly IV drip of the stuff. Hours of being hooked up to a machine on the chemo ward. There’s been no escaping that place!

I’ve gone from having almost non-existent levels of magnesium to having half what is considered normal. Thats where it’s stopped. For ages my levels have refused to budge. Here’s the irony….having chemo depleted my stores of magnesium so I need more but because of the chemo my kidneys can’t retain it.

It’s so very frustrating. Plus on top of the exhaustion, it also causes muscle weakness and cramps.

With limited energy I have to be quite selective about what I do and how I spend my spoons. I’ve mentioned the spoons before. When you have such fatigue it helps to think of what energy you do have as something tangible like spoons. You only get so many spoons a day. Sometimes none at all. There has been a severe spoon shortage just lately and so I’ve been using them sparingly.

I have used some spoons on exciting things. Hopefully soon I will blog about what done from my List for Living but have been too tired to write about!

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!

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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.

Bloomin’ well

floIt’s been a while. Far too long since I last updated this blog. I’d like to say that I’ve been away on some grand adventure. But no. I’ve just been shattered. I’m glad to say that my radio silence is not due to being ill again.

It feels like I’m being stalked by tiredness. I can’t just shake it off. Whenever I think that I’ve beaten it and I do more, like have a sort of normal day, it comes back again and knocks me sideways.

Of course I’ve spent plenty of time over the last year and a half being exhausted. But this is a constant and enduring kind of frustrating fatigue. My bones and muscles feel hollow.

I haven’t stopped doing things but I tend to do less and at a much more leisurely pace. This gives you more of an appreciation of the simple pleasures in life. I’ve been enjoying spending time with family and catching up with friends including some that I haven’t seen for decades!

Also I’ve now found new ways of being active without moving much. I’ve started doing a bit of gardening. Well, pruning roses in my parent’s garden. I either stand or sit and chop away. I quite like cutting out the dead and dying parts of the plant and ending up with a rose bush that’s very much alive. I’ve been surprised at how therapeutic it is. Plus it makes my arms ache, in a good way.

Back in the day before all the cancer stuff happened I had a personal trainer. One of the things we used to work on was improving my fitness so I’d be better at netball. My PT used to make me work so hard that I’d swear at him which he loved as he knew he was doing his job properly.

I don’t see my personal trainer anymore but not so long ago he sent me a present in the post. Inside a massive cardboard box was a netball. Now I spent small packets of time throwing the ball in the air, sometimes when I’m sat in my comfy chair in the living room. When you’re so unbelievably tired being able to do small things means so much.

Despite being wiped out most of the time, I do feel well. It’s now three months since my chemo ended. I’m gradually beginning to believe that things may not turn out quite as bad as I’d expected. After my devastating diagnosis in December I thought my life would now be a relentless circle of cancer-chemo-cancer-chemo etc with little time to recover in-between. Now I’m daring to think the gap between may be long and lovely.

Recently someone asked me what happens next. I replied that I was just waiting for the cancer to become active again. But as soon as I said it, I knew that wasn’t right. I’m doing anything but waiting. It was at that moment I realised something special. While the disease is dormant I’m getting on with enjoying life even though it’s now a seriously slow pace.

Six months on

As milestones go, this is a pretty big one. It’s now six months since I found out that I had cancer again. Only this time I was told that the disease was advanced and would kill me. I asked how long I had left and the doctors said I could expect to die within six months to five years.

And yet, here I am. Still very much alive!

Back in December the news was bleak. It was explained to me that nothing would get rid of the stupid cancer. Not only was it incurable but I was warned that the tumour could grow rapidly like wildfire. At that hospital appointment I was advised it would be a good idea to get my affairs in order.

It was a couple of weeks before I started chemo. Even in that short time, blood tests showed that it had got bigger.

This was the third and final time that I would be diagnosed with cancer. I thought about all the things I wouldn’t get to see or do. I feared that I might not make it to the summer, half a year away.

I looked through my diary. It was pretty blank but something stood out. I had a dentist appointment soon after the six month cancer-versary. It was upsetting to see something from my future life that might not happen. I’m not that keen on going to the dentist but this mundane event represented normality. Of being alive.

Dealing with this kind of diagnosis has been hard on so many levels. With shock and disbelief, you grieve for the life you hoped that you’d lead. Your brain finds it difficult to process the facts. It constantly searches for a solution when there is none. You end up exhausted.

While it has been horrendous, it hasn’t been quite as bad as you’d think. I mentioned this to one of my medical team and she said that many people don’t realise how resilient they are until they experience such an extreme situations like this. I wish I’d never had to find out.

I’ll never be happy with this cruel twist of fate but half a year on from the diagnosis something has changed, something that I couldn’t have imagined happening. I now feel like I have acceptance of the situation. You can’t be constantly angry or upset. It takes up too much energy and doesn’t get you anywhere. Most of time I find that accepting the inevitable gives me a kind of peace.

Thankfully the evil chemo cocktails have managed to stabilised my tumour. They have put out the fire. No-one knows how long this will last for but at least my cancer has responded to treatment. I continue to be incredibly tired but despite this I feel well.

Not for the first time it seems like I’ve been given a second chance. I’m now coming to terms with still being alive when I wasn’t sure that I would be. It feels like I can stop holding my breath.

It looks almost certain that I will get to sit in the dentist’s chair. I will enjoy every painful moment.

Here’s to the next six months and beyond!

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#6

Despite a busted thumb, Chantal, my friend the flower girl, offered to drive me to hospital in her van. Although she looked like she was the one who needed treatment and not me. Chantal apparently dislocated her thumb while doing some extreme gardening. Who knew that potting a plant could be so dangerous!

Before chemo we met for lunch at a local pub. There we spotted something unusual on the menu – homemade tonic water infusions. They were kept behind the bar in giant coloured glass bottles with labels written in biro. Designed to be served with gin, the tonic had been infused with things like celery and lemon, cucumber and mint, green tea and pickled ginger.

Tempting as a G and homemade T sounded; I knew that my body would soon be awash with poison so thought it best not to try one. What I didn’t realise is that it wouldn’t be long before I’d get my very own infusion.

It’s been another tough week with plenty of side effects. An almost constant nose bleed, mouth ulcers and a sore throat. Oh and of course, tiredness. A few days ago I felt so shattered that I wasn’t sure if I could make it out of the living room to bed. I desperately wanted to lie down but I feared that if I stood up I’d collapse. Thankfully I did make it to bed without any drama.

An afternoon of deep sleep later and I was feeling better. I didn’t think much more of it. I try not to dwell on the awful stuff. I’m glad that I still have options even if that means a bit of pain and getting through lots of bloody tissues.

There are some side effects that are easier to hide. My hair is just about starting to fall out, again but because the chemo is weekly I shouldn’t lose it all at once. While I still have some left I’m enjoying not wearing a wig every day. My hair is super short hair and when it’s cold outside I cover up with a hat. Even when there’s a beautiful blue sky.

As the chemo cocktail bar is well heated and then some, I left my hat in Chantal’s flower van. Before the treatment can start your blood is tested to check how your body is coping. I was told that I was well enough to continue but I’m low on magnesium. Ahh, that makes sense. It explains all the fatigue.

As always I was hooked up to a drip and promptly went straight to sleep. I woke up just as the chemo finished and was given another bag of clear liquid. This was a magnesium infusion. It wasn’t in a fancy coloured bottle or quite as nice as a proper drink but hopefully the effect of this hospital tonic should give me a boost that lasts for days.

Now that chemo#6 is over it means that I’m one third of the way through my treatment which is brilliant. I now know that I’m pretty much able to deal with the cancer-killing drugs. It feels like the right time to start focusing on the future. However long that may be.

So I’m finally finishing my List for Living. I reckon that I’ll do a post on my new list towards the end of next week. In the meantime I’m looking for some examples of inspiring bucket lists. If you’ve seen any great ones I’d love you to leave a comment for me. Thanks x

Good cold, bad cold

If you had to pick a time of year to have a chemocation then I suppose autumn/winter is perfect. A chemocation is rather like a staycation. Only this is no holiday at home but chemo enforced time off. And I can’t wait for it to be over.

Thanks to my incredible tiredness I’m still mostly stuck indoors. One of the perks of an A/W chemocation though is being able to have quality time by the log fire at my parents’ house. There are worst ways to spend an autumn afternoon.

But really I’d rather not be stuck indoors. Slowly I’m building up my stamina so that I can spend more time outdoors getting cold and wet.

The chilly weather means that when I do go out I can easily wear a hat over my shaved head and it doesn’t look out of place. I like my new number 3 hair cut but I’m not going to be showing it off in public anytime soon. That would just take too much energy. It’s less stressful to just blend in.

Raquel, Candice and very occasionally Barbarella are also helping keep me warm. I quite enjoy wearing my wigs. They still itch like crazy but over heating is no longer such a problem.

Ten years ago when cancer last made my hair fall out, it was all very different. Back then I told hardly anyone, I was so embarrassed. I didn’t even have a name for my wig. It was identical to my old hair. I didn’t like wearing it and I never realised how handy it would be on my travels.

I’d just moved to Moscow for the BBC and it was the very start of winter.

Snowy sunset from the BBC Moscow Bureau

Russia was properly freezing, exactly how you’d imagine that it should be. I’d wake up every day hoping that it had snowed overnight and often I was excited to find that it had. At times just being outside was painful; as you breathed in, the icy air would scratch your throat and made your lungs feel like they were on fire.

One Sunday afternoon, not long after arriving, I ventured out to a market on the edge of the capital. It was next to one of the furthest stops on the metro. On the way there I sat opposite a pensioner. The woman with dyed red hair was dressed in fur from head to toe. She eyed me suspiciously and then gave me a right telling off.

My crime? Not wearing a hat.

As way of an apology I said that I was English. I didn’t feel like revealing my lack of hair to a random stranger. However she was right to chastise me. It was so arctic outside that within minutes of getting off the metro, my mobile phone had frozen.

Yet my wig was brilliant. My fake brown bob kept my head beautifully warm.

These days I tend to wear hats a whole lot more, even when I’m inside. It turns out that my internal temperature gauge has bust.

I am officially cold.

All those evil chemocation cocktails are to blame. My body thinks that I should be around 35c. Unless I’m in a swelteringly hot room I tend to spend much of the time shivering. According to my hospital handbook, my temperature is a code red and I should alert the on-call oncologist straight away.

Ever since my cancer operation my feet have been a bit numb and never that warm. Now they are like blocks of ice. It’s like I’ve just come in from the cold after a day braving the elements in Moscow. So I wear thick ski socks at all times and I have a selection of hot water bottles which get a lot of use. Sometimes I sit in the living room wrapped in a duvet next to the fire.

But apparently my low temperature is nothing to worry about. The problem should just improve all by itself. In the meantime I’ve been told to wear lots of thermals. Here’s some freaky logic. It may be warmer inside but I tend to shiver less when I’m outside.

Maybe this is my body’s way of saying that I need to get out more as the chemocation is coming to an end.