Hello again

Yes it’s been a while. Over the past few months I’ve become very ill. The main treatment finished in the summer but I contintinued with a maintenance chemo until December which was exhausting. It means I’ve now had more than a hundred sessions of chemo!

I also started vomiting a lot, everyday. Loads more than normal. I stopped being able to eat properly and started to get really poorly. Things came to a head and I ended up in hospital just after Christmas.

Luckily I got out just in time for something very special to happen. It was completely unconnected with the cancer and totally amazing…

Chemo number 78

It’s my last chemo. In total this is number 78. What a terrifying achievement. It’s both ridiculous and amazing that I’ve had so many of the toxic cocktails. They’ve made me horrifically ill and but also they kept me alive.

It’s been around 14 years since I was first diagnosed but it’s been in the last four years that I’ve had most of the chemo.

As you know I travel a long distance by train from my home in the Cotswolds to London for treatment. I quite enjoy the journey. It’s also easier to be ill on a train than in someone else’s car! Looking out at the countryside also helps to put things into perspective. 
The landscape looks so very beautiful. When you’re aware that your life maybe limited, things take on a new meaning. On these train journeys, when I look out the window, the colour of the land and the sky seem to be more vivid. Somehow much brighter. Like it’s being filtered though some kid of photo app. Or maybe I’m just noticing more especially after being cooped up at home most days. Whatever it is I’m glad that soon I won’t be having make this trip to get a big dose of toxic drugs. 

End of chemo, almost

This is just so hard. The tiredness is relentless. There’s only a couple of weeks to go but there are times when I feel like giving up. But I’m not and I won’t. I know there isn’t really an option so I just have to somehow get through chemo no 77 and 78 and the debilitating side effects.

As I’m constantly shattered my goal most days is just to have a shower. Having a shower AND washing my hair – now that is a big achievement. I was warned about being totally exhausted but I didn’t think it would be this bad. Perhaps I did but I didn’t want to believe it. If I fully appreciated how awful it would be, then I might not be doing this all again.

A while ago I had an enforced week off from chemo and it was brilliant. It really helped my immune system to recover from all the evil chemo cocktails. Mentally it was great to have a break from the seemingly never-ending treatment. It also enabled me to remember what it’s like to feel well and realise that this chemo will come to an end.

Another reason that it can’t be over quick enough is that my hair is starting to fall out. I was told that my hair would thin but I wouldn’t go bald. I suppose thats what’s happening now.

There are noticeably more hairs on my pillow but I’m not too worried. After having my hair fall out three times, I know that what’s going on should not alarm me. It’s not coming out in handfuls. But even so, I don’t like it. I just try to ignore it, safe in the knowledge that I still have lots of hair.

 

One thing that’s me helped each week has been a random act of kindness. Back in April I wrote about how fizzy sweets really helped. My anti-cancer drugs are very toxic because they are made from heavy metal and this gives you a horrible taste in your mouth.

A couple of days after that blog post, my friend Keith sent me a load of different fizzy sweets in an old fashioned sweet shop jar. I got the surprise parcel one night after a long day on a drip. I’ve been taking a bag of them with me on each trip to hospital. Cola bottles and fizzy fruit balls are the best. They really do the trick. But they are extra special to me as it was such a lovely gesture.

Now the sweets have almost gone and I have just two more chemos to go. The sight of the almost empty jar makes me very happy that the treatment will soon be over.

 

Chemo mini-break

I’d been seriously thinking about taking a week off as the chemo had got so exhausting but that decision was taken out of my hands. Last week as usual I had blood tests when I arrived at hospital. These are to make sure my body is well enough to cope with the evil cocktail of drugs.

I knew that I’d been feeling awful for several days. It turned out that I really was properly ill. The results showed that basically my immune system was too poorly for chemo. For anyone interested my neutrophils were 1.4. It means that I am have neutropenia and much more susceptible to infections.

At hospital I was told that I should spend my time off resting. After a magnesium drip I was sent home. It felt weird, almost like I was skiving. I hate the chemo but I was mentally ready for it. Instead we got to go home early.

I was warned that having the week off could make me feel much better so I shouldn’t over do it. But there’s been not much chance of that.  For the fist few days I just felt knackered and mostly snoozed on the sofa.

The biggest change is that I’m not attached to a bottle of chemo which needs to be carried everywhere. It means that this has had a week off too.

It’s brilliant not being connected to the bottle 24/7. My port gets a valuable week off too. Thats the thing which is buried in my skin and where the needle goes in and connects a tube to the bottle

I’m so aware of having all this stuff attached to me that it’s strange to not have to worry all the time. Usually I have to make sure I don’t move my right arm too much otherwise the needle could pop out. I have to be careful that the tube doesn’t catch on anything, especially door handles. Every time I stand up I need to remember to have that stupid bag wrapped around me.

After almost a week off I am starting to get a tiny bit better. Getting your brain and body back is an incredible feeling. Suddenly your head clears and you can move around a lot easier. It’s not all good though. When you’re really ugggggh you tend to focus on how horrible you feel. However when you’re not so ill, you become much more aware of normal life and what you’re missing out on. It becomes tantalisingly close but it’s still just out of your grasp. But even so I’d much rather feel like this than really sick.

I know that my chemo mini-break must come to an end soon. Despite how dreadful the drugs make me feel and how inconvenient how the bottle is, I really hope that I’m well enough for the toxic treatment this week. I don’t want anymore time off. Well I do, but i know thats not the best option for me. This stuff is helping to enable me to live longer and however awful it is, I need to finish this course of chemo.

Chemo no 73

Chemo is such a long hard slog. I’m now more than half way in but there are still far too many weeks to go. The drugs are working and my cancer is now stable which is brilliant. It makes the treatment so much easier to deal with.

Apparently I’m coping well. By this point most other women on the same regime take a break. I was determined to push through and get this finished as soon as I can. Although now I’m not so sure.

Part of coping with chemo is accepting this new reality. You can’t live life like you want to. But it’s so boring. You’re too knackered to do much.

One thing I do occasionally is to draw flowers. Like those above. Focusing on the tiny details of the flowers helps me to forget about the bigger picture.

The worst side effect is the tiredness. It’s just horrific and relentless. Most days I’m just wiped out. Often my body is exhausted but my mind isn’t. It’s frustrating. You want to do stuff, your brain tells you can do things just like you used to but physically it’s impossible.

The trouble is that I now have  a dangerously low level of magnesium. My latest blood test result for it had to be double checked as it was unbelievably bad. As my body can’t retain it and the toxic drugs only make this worse theres not much we can do other than regular mega dose drips of magnesium.

The chemo also has an impact on my already rubbish digestive system. I’m on a low fibre diet anyway. I eat hardly any fruit or vegetables. Due to all the treatment I’ve had my body can’t cope with anything which is too hard to digest but now I have to be even more strict. The other week I ate part of a peeled raw tomato. Bad choice. It made me vomit for a couple of days. I know it sounds ridiculous that something so innocent, something healthy can make me so ill.

Generally most people having the treatment are exhausted and this is made worse by the cancer killing drugs. Chemo is often a long, dull day sat in a room full of ill strangers. So it’s understandable that you do what you can to pass the time.

Phones are great for entertainment but recently everyone on my ward had to put up with a visitor playing lots of video clips out loud. At the time all the patients including me were trying to sleep but with each new clip I woke up. I’ve even sat next to someone who talked to a friend for half an hour with their phone on loud speaker. I mean seriously, do you think any of us wanted to listen to both sides of your boring conversation??

Please, please don’t put your phone on loud speaker on a chemo ward, use headphones instead. Otherwise you’re just being selfish.

Okay, rant over. Did I mention that chemo can also make me quite bad tempered!

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.

Chemo holiday holiday!

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.

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.

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.

Chemo holiday!

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.