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!

No 21 on the List for Living

21) Hold an exhibition of my cow photographs

For as long as I can remember I’ve loved taking photographs of cattle. Growing up on a farm in Gloucestershire meant they were always in the fields around us. With a gentle and curious nature, I think they are wonderful animals.

I’d always fancied having an exhibition of my pictures but never thought much more about it until I came up with my List for Living. My friend Gill, who runs the Garden Tea Rooms in Worcestershire offered to display my work. Over coffee, cake and chemo, we planned the exhibition – ‘Have I got MOOs for you’.

Many of the images that I selected were taken while I was going through cancer treatment. There are not only cows in my collection but also plenty of steers. In other words both girls and boys.

Taking pictures of these big, beautiful beasts has helped to get my through the difficult times. Over the past couple of years my parents have looked after me as I recovered from major surgery and relentless chemo. Being in the countryside was a tonic in itself, plus taking photos of the cattle over the garden fence took my mind off things.

Now once again I’m trying to recuperate from chemo. I’m still ridiculously exhausted but putting this together has given me something lovely to focus on while not moving far from the sofa.

The exhibition opened this weekend. It was good to feel nervous about something which didn’t involve blood tests or scans. We arrived early in the morning to get it ready. There were 15 pictures to put on display. This is my favourite, it features a pair of cheeky brothers.

I should say that it was my friend Rache who worked out how to put up the hooks on the walls. That nervous excitement meant I wasn’t much use. She also took these photographs of my photographs. Really all I did was stand back and decide where to put them!

It was a great feeling, such a sense of satisfaction, to finally see my pictures on the walls in their own exhibition. With the cattle grazing around us, there was only one thing left to do and that was to celebrate with a cream tea.

‘Have I got MOOS for you’ runs until the end of the month at the Garden Tea Rooms which is next to Witley Court in Great Witley, Worcestershire.

http://www.witleytearooms.co.uk

Special thanks to Gill Edmonds – Making People Happy With Cake!

Result

I’m back. Finally, for the first time in months I feel much more like me.

The trouble with chemo is that it takes such a long time to recover from. It doesn’t help that by the time I finished, my magnesium levels were almost non-existent. Slowly I’m getting better. I wish that just having the toxic drugs automatically annihilated tumours but it’s not that easy. You could go through all this and it still have no effect.

One of the hardest parts of having cancer is waiting for important test results. It’s like having a really evil lottery ticket. You get automatic entry into the draw. With the right set of numbers, your life could be transformed. You get to have more years on the clock, a renewed sense of hope for the future and a holiday from the chemo.

Before you find out the result it seems that anything is possible. You run though all the lovely things that the good news would bring. It seems so real. Despite the odds, which for this advanced stage of ovarian cancer are bleak, you always dream of winning the jackpot.

What makes this cancer lottery such a nasty game is that being given the wrong set of numbers can only mean more pain, suffering and worse. When it’s bad news, it feels like you were almost within touching distance of something great and it’s been snatched away. When the reality is that you weren’t even close.

So several weeks after finishing chemo I was back at the hospital to find out my magic numbers. It’s at times like this that you’ll find me next to the fish tank. Sitting in a high backed chair with hard wooden arms. The chair is a nasty shade of pink. It’s a colour that is probably supposed to be welcoming to cancery people. When to me all it says is bulk buy and wipe clean.

I am solid block of nerves. Not the excited, adrenalin infused buzz that I get when I’m about to do something scary or go live on TV. But there is a crushing lump of anxiety which fills my body. It makes my breathing short and my brain run slowly.

You wait and wonder about the numbers.

My coat is off and laying across my lap and my bag is by my side. I am more than ready to spring out of my seat when my name is called. The fish tank seat is nearest to the consultants’ rooms.

No news is good news. For those few moments or even hours you are not being told something horrible, which is why I don’t mind the waiting part.

It’s the wondering that I find stressful. It’s as if every cell in my body is on standby. Ready for flight or fight but all you can do is sit. I’m almost frozen with fear. I don’t really want to talk, I can’t eat or drink, I can’t move. The tips of my fingers tingle with nervous energy. Or maybe it’s the chemicals.

You try to think positive but after getting so much bad news you know that hope alone won’t change a thing. You prepare for the worst. My brain is jittery.

Yes or no? Good or bad? Life or death? My consultants don’t mess around. We’ve been through this so many times before. They know that I want the cold, hard facts straight away. It only takes a second to find out. The combination of chemo and clinical trial drugs are working. It’s the right result.

Yes. Good. Life.

All I feel is relief. Not happiness or joy. This pure relief is similar to the sensation you get from quickly drinking a glass of something strong and full of ice, it seems to flood through my body. I relax.

The enormity of the news is only now starting to sink in as I start to feel more like myself. It means I get to live longer. Hopefully years longer. This is amazing!

My cancer is not cured but the disease is dormant once again. No one knows how long it will stay this way. Right now I’m just trying to focus on being the current holder of a winning ticket.

Chemo no 6

It’s all over now. My last chemo, thankfully, was a couple of weeks ago. It’s probably not the final one ever but it’s the last one for a while. Maybe for months. Hopefully for years. I’m so happy to be at the end of this current course of treatment. I’ve now had 35 chemo cocktails in total, I think, most of them over the last two years. To not have to face the prospect of that evil stuff, like that above, dripping into my veins is wonderful.

I hope the break is long enough to get some hair. It’s still a shock to see my bald head. I really miss not being able to tie it back. Yes I could do that with some of my wigs but it’s not the same. Anyway I’m not really into wigs at the moment. Wearing a wig takes up precious energy. Instead most days I wear a soft hat. It’s much more comfortable and doesn’t seem out of place at this time of year.

But to celebrate chemo no 6 I wore my favourite wig to hospital. It’s the one you see me wear when I’m occasionally on television. I now have an impressive collection of them however my work wig is the one that I love wearing the most. Despite this it still has no name!

I always like to try and look smart when I go for treatment or consultations. It gives me back a tiny portion of control, knowing that I’m not too ill to wear make-up and a dress. If I look well, I feel better. I feel worse when I don’t make an effort. Cancer forces you to give up so much of your identity that you have to cling onto what you can.

Chemo 6 was totally unremarkable. I saw my consultant, The Professor. It was the best kind of appointment as there were no test results to be told about. We ran through all the side effects of the past few weeks but there was nothing alarmingly awful. Just standard awful.

For this treatment, mum and my aunt Rose came along. To keep them entertained I sent them out on missions. First to the pharmacy, now thats always it’s an adventure which tends to take ages – finding the place and then waiting in the inevitably long queue. After picking up my prescription I asked them to go in search of a jacket potato with melted cheese. They were successful on both counts.

I then slept for a few hours. Probably the most interesting thing was eating a baked potato in bed in the afternoon. It was the first time I’d had eaten something hot while having chemo. The day really was that dull.

The nurses stayed late to ensure that my treatment got finished. I ended up being the last patient to leave the ward. Parts of it were already in darkness and the cleaner had started his evenings work. As I walked out my spirits lifted. I had a dizzy, drunk, fuzzy feeling. The potent cocktail of super strength drugs and steroids was acting like the rocket fuel, giving me the boost I needed to get home.

I felt so wired and that we started our journey by bus. It took us through streets that have become so familiar to me. Past the school where I used to play netball matches for the BBC team and then along a road to the sports centre where we used to train. The outdoor court we used was next to a row of football pitches. It had a concrete canopy as it was just below a busy fly-over. With such a stark, urban setting, it always felt like the set for a trainer advert.

The bus stopped near the training ground and a sporty looking woman got on. She was dressed in the kind of kit that I used to wear for netball. As we travelled further away from the hospital I smiled to myself. I realised that this was a tantalising glimpse of what my life after chemo could be like.

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.

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 25th 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.

Bringing home the bacon

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Just call me Lady Gaga. There can’t be many times when you go out wearing a dress made of meat! Lady Gaga had beef, whereas I had bacon. Red and white rashes made of fabric.

This of course was a fancy dress outfit. It was all down to my friend Rache. She had got us two outfits, bacon and fried egg. You may find this surprising but the meat option looked quite good, it was almost like a bacon body con dress. However the egg and especially its yoke, was not at all flattering.

Even so Rache said she would wear the egg costume. When someone lets you be the bacon, you know that’s a sign of true friendship.

The outfits were for a weekend away with my fabulous fancy dress friends. This is something that had been arranged more than a year and a half ago. We ‘d just done the Race for Life. Well, my friends had. I watched and cheered them on; thanks to surgery and chemo I was far too ill to take part. Afterwards someone suggested we plan another trip to Butlins. This time we chose to go to a ‘disco inferno’ weekend in Bognor. Basically it’s an adults only weekend and is one big party!

Back then, after the Race for Life, I never imagined I’d be still going through yet more chemo. Thankfully our weekend coincided with my well-est part of the gap between treatments. It was a couple of weeks ago but my energy levels make it hard to do too much writing. Also soon after we came back, I had chemo no 3.

During the weekend I was able to sleep loads so that I didn’t miss out. I’d been worried that I wouldn’t even be able to go but I’m glad I did.

In Bognor there were so many people in fancy dress that my bacon didn’t seem at all out of place at all. There were nine of us. As well as bacon and eggs, in our group we had a hotdog, plus bottles of ketchup and mustard. Also a Rubik cube, a 50 shades inspired punk rocker and Boy George! It was such a funny and random weekend. We just laughed so much.

At one point when we were walking from our hotel to the bar, the condiments with their red and yellow squeezy top hats were being very slow and were someway behind us. We shouted to them, “C’mon ket-chup.” I also quite liked asking people if they knew where the nearest grill was!

Wearing a body con of bacon was so silly and hilarious; while the egg looked like someone had stuffed a pillow under the bright yellow yoke. Just thinking about our almost full English ensemble gave me and Rache hysterics. It was really good just to enjoy something so stupid for a change.

The thing about cancer is that it’s all so serious. I know, it is terrible and it should be treated seriously. But that sombre state can seep into almost every aspect of life. I don’t want constant sadness. I still have so much living to do.

Let’s face it we are all going to die. We will all get hit by that bus someday. It’s just that I know which bus it’s going to be. My days are filled with either chemo cocktails, their disgusting side effects or talking about medical stuff, all the time hoping that my bus will be very late.

Having a deadly disease doesn’t kill off your sense of humour or even your desire to have some fun. Sometimes it feels quite the opposite.

However I do draw the line at wearing a onesie. My friends had bought the all in one outfits for us all to wear on the Sunday of our weekend away.

Now I love a bit of fancy dress and clearly I’m a big fan of looking like bacon….but a pink pig onesie ??? I did wear it. Okay it was only for an hour or so but then I had to get changed into civilian clothes. The onesie was pastel pink, fleecy material and with my wig, it was far too warm. That was my excuse anyway.

I did say that if I had a choice between chemo and wearing a pig onesie, then I would take the toxic treatment any day.

That was until chemo no 3. Then I would have preferred the fluffy pink outfit. But it was still a close call!

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#2

Evil. Thats the only way I can describe chemotherapy. My second cycle of the treatment was horrific. Not the day itself. That was fine, fun in the usual speeding time with special people chatting, drinking coffee and trying to ignore the drip that was feeding me the toxic cocktail of drugs. No, it was the days afterwards that were hard to handle.

As the steroids wore off, the horrific-ness kicked in. It was one of the worst chemo hangovers that I can remember having. My mood felt as awful as the physical symptoms. The last time I felt that ill was last year when I was in intensive care following major surgery and a brief, unexpected, flirtation with dying.

The only positive thing I can say is that there was none of the nausea of chemo no 1. I didn’t have any projective vomiting yay! Thanks to everyone who tweeted me suggestions about what anti-sickness medicine I should try. The new tablets are working beautifully.

Then it lifted. After almost a week, the nasty chemo symptoms just left me. I’m still tired but at least I feel human again.

Luckily this happened just as I was due to do a day at work. Okay, it was down to more than just luck. I had thought that I’d be recovered by then.

You may be wondering why I still want to do my job. It’s totally my choice to work. I don’t want the cancer, the chemo and the uggggggh feelings to be the only things in my life. Besides, I really enjoy it.

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On Monday I was reporting on the impact of the storms for BBC News. It wasn’t feeling ill again that I was worried about but more the windy weather. This was my first day wearing a wig again. Not such perfect timing.

When I was stood outside I had the straps inside the wig on their tightest setting. It was a vice like grip and it hurt a bit but at least it kept my wig secure on my head. There would be no chance that a cheeky gust of wind would give it lift off!

It’s the same wig as I wore on TV before, only my hairdresser Angela has given it a new look. I do have a whole new autumn/winter collection of wigs to wear but I want to start off with something I’m comfortable with.

My hair seriously started to fall out just as I was feeling so desperately ill. Great big handfuls of my lovely, new hair. I almost had a proper fringe. It seemed that most of it slid off at night and onto my pillow. Previously my hair has slowly left me so the speed at which I went bald this time was a shock. It took about a week before all I had was some lonely tufts. It looked as horrific as I felt.

This is one of the hardest parts of the treatment. You understand that you are going to be very ill but it the fact you lose your hair as well is very upsetting. You no longer look like yourself. The chemo takes away your identity.

I knew there was something unpleasant I had to do. A few days ago I had what remained of my hair shaved off. There is nothing left. My appearance has gone from poorly to pop star. Now I look like Jessie J when she shaved her head. Ha! I’m only joking. My head looks all white and weird however it is better than it was. Most importantly, instead of letting the chemo do something to me, I took charge. And this makes me feel strong again.