Chemo#13

I quite like Mondays. It’s the start of my super short week. I’m now so incredibly tired that my week only lasts for two days. Basically I feel sort of normal on Mondays and Tuesdays, and then the treatment begins again. Weekly chemo feels relentless. I’m spending most of my time in bed. I just want it to end. Last week it nearly did.

A couple of days before I was due to have chemo#13 I thought something I hadn’t thought before. For a few brief moments I decided that I didn’t want to continue.

I felt so ill and frustrated by the horribleness of it all. It’s not just the toxic drugs that are so awful but all the other stuff too. Last week I spent around 12 hours over three days at hospital with scheduled appointments, procedures and tests.

When I woke up the next day after the wobble, my symptoms seemed to have faded a little. I wasn’t so exhausted and I knew that really didn’t want to end it early. Even so I came up with a list of pros and cons. I realised that there is only one thing that matters, it’s first on the list and outweighs everything else.

CHEMO PROS

*It’s hopefully helping me to live longer

*Chemo makes me feel that I’m doing something to fight the cancer

*Somehow it makes my skin glow. I know this is totally ridiculous but everyone tells me that I look really well when I actually feel so ill…

CHEMO CONS

*Extreme fatigue, most days I’m close to collapsing

*Lots of random pain all over my body, especially in areas that I’ve had surgery

*Fingernails and toe nails hurt and feel like they’re going to fall off

*Fingertips are a bit numb, meaning I’m clumsier than normal

*Painful pins and needles in my feet and hands

*Breathlessness, I can’t really walk and talk

*Painful to walk and I can’t exercise like I used to

*It’s making my hair fall out

*My eyes are watery and sticky as I only have a few eyelashes are left

*Constant bleeding nose

*Comprised immune system and I could end up dangerously ill if I get an infection

*Steroid induced mood swings

*Insomnia

*Disgusting taste in my mouth

*Dizzy spells

*Bloating

*Always starving thanks to steroids

*Chemo weight gain

*Mouth ulcers and sensitive teeth

Now that’s some list. The treatment is truly horrific. You need to be totally convinced this is what you want. I am but it doesn’t stop me from sometimes pretending that it’s not happening.

Before chemo#13 started there were lots of things I had to do at hospital. They required me and mum to navigate the confusing corridors which link the mass of buildings together. On our way back to the ward we made a break for freedom!

Instead of following the signs we left the hospital for an outdoor detour. The morning sun warmed my skin and I felt amazing. For a moment I wasn’t a patient. I was someone out for a walk with their mum, trying to convince us both that we weren’t lost.

As we weren’t that lost, it was soon back to reality. It was the first time I’d faced the toxic drugs after questioning whether I wanted to carry on. As I was hooked up to the drip I knew I wanted to continue.

Some people have been in touch with me on the blog to say that their elderly relatives are refusing to have anymore chemo and they don’t know what to do. I can only really talk from my own experience.

For me the most important thing is being able to have a good quality of life. Aside from the cancer, I’m a fit and healthy 41 year old. I feel very resilient. Despite the long list of chemo cons, I’m lucky that my body is capable of withstanding the treatment and I’m coping well. However, I know that I’ll probably need more and more evil chemo cocktails after this course finishes and in the future I may feel differently. There may come a point when I decide that I’ve really had enough.

This is such a personal decision. I’m convinced that I’m doing the right thing. I feel that I have so much to live for. Whatever it takes, I’m going to make it through the remaining five sessions of chemo.

Happy Monday

There was a strange man in my bedroom a few days ago. When I say strange, I mean I’d never seen him before. With a laid back attitude, he was tall, tanned and had bleached blond hair. He looked more like a surfer in a smart shirt than a doctor.

The GP had been called as I felt worse than I had since the last lot of chemo. The leg pain, the sleepless nights and being permanently shattered had all got too much. Just thinking was hurting my head. None of the medicine I was taking seemed to work.

It was a locum doctor who turned up. We’d never met but it emerged that we’d been at university together. It made this random meeting in my bedroom seem even more surreal.

He stood next to a pile of magazines which were on the floor next to my bed, all unread. Dr Surf picked up a copy of Health and Fitness. A sporty looking woman smiled out from the front cover.

“This is you,” the GP said pointing at the magazine he was holding. It seemed more of a statement than a question.

“Hardly,” I replied.

I wasn’t exactly a picture of health. My face was still a bit red and puffy from crying with exhaustion earlier. I didn’t have enough energy to even consider drawing on some eyebrows or putting on a wig. What little hair I had left on my head was sticking up exposing my scalp. As for fitness? Pah.

After six months of cancer treatment it’s hard to see yourself as anything other than someone who’s very ill. Having a potentially killer disease takes over your whole life. But the doctor made me realise that I’m more than just a patient. That’s something I’m going to enjoy getting used to.

Anyway he sorted me out with some different painkillers. Since then they’ve been working wonderfully.

I had five hours of uninterrupted sleep last night. Five whole beautiful hours. When I woke up I felt rested and more like my old self. The pain seems to have eased and taken some of the tiredness with it. Most of those chocolate cravings have disappeared too!

Today I managed a tiny walk in the garden. I haven’t done that for weeks. Sunny with a slight chill in the air, it felt like autumn was on its way. It reminded me of that back to school feeling of exciting possibilities ahead.

I was quickly out of breath but I forced myself to go on. I’m determined to be fit once more.

Dr Surf was right. I was once like that sporty girl. Not a cover star mind you but just someone who liked exercise and being healthy. Now I’m feeling more like me I can imagine being that girl again.

Chocolate, my sweet medicine

There’s one thing you can say about chemo – it’s certainly saved the best ’til last.

My body is now chock-a-block with the cancer killing chemicals and the pain has been an absolute nightmare. Far worse than the exhaustion and sickness.

It was all so different a week ago. I was on such a high, finishing chemo and putting the whole horrible cancer treatment behind me. The adrenalin got me through. Now the party is over and this feels very much like the hangover.

But as with a hangover at least there’s something unhealthy that helps to ease my pain – chocolate.

I’ve been getting massive cravings for great big slabs of the stuff. Well, any kind really, it doesn’t matter…..chocolate ice cream, chocolate fudge pudding, chocolate truffles. It’s all good to me.

Six sessions of the evil chemo cocktail means that my feet are always ice cold and that’s where the pain starts. A nasty tingling in my toes spreads into my ankles; it gets worse as it works its way up my leg bones and into my knees. It finally stops about half way up my thighs.

During the day I’m battling to stay awake so it has to vie for my attention. But when I do want to sleep it just screams at me. Last night it felt like there was a machine at the end of the bed trying to wrench my legs away from my body.

Since when did the side effects of chemo become some kind of medieval torture?

Following the treatment last week, this intense agony has been hitting me in waves. It’s been so bad that at times it’s almost impossible to walk.

With all this going on, chocolate and plenty of it, has made things feel a bit better. It also cuts through the metallic taste in my mouth that chemo leaves behind. But there’s more to it than that. Apparently chocolate does actually helps with pain relief too.

Considering everything I’ve been through over the past six months, I’m amazed that my body is still able to work out what I need and let me know. And that fact that what it needs right now is more chocolate is pretty good.

A letter to my cancer

Dear Cancer,

It was six months ago that we were reintroduced. I’d already got rid of you once and I can’t believe that you came back for more. This time I only had a fifty fifty chance of surviving. Like the flip of a coin. Well, heads I won.

After half a year of hell you are now just dust and dead cells.

You started out as ovarian cancer, if that wasn’t bad enough you took the liberty of spreading around my abdomen. It took a team of surgeons the length of an average day at the office to remove all visible traces of you. I imagine that the tumours have long since been incinerated. All that’s left is an awesome battle scar.

The next step was to kill off any lingering reminders of you. I had chemotherapy to destroy the teeny tiny cells that couldn’t be seen. On Wednesday I’m having the last of my six sessions

Like a coward you left me before the chemo had even finished. Repeated blood tests show that you are no more.

I’ve not just beaten you; I’ve proved just how much I want to live. My body hurt so badly when I woke up from the operation that I thought I was dying. I wasn’t.

But the drugs to deal with the pain almost killed me. They lulled me into a deep sleep. I quickly slipped into a happy bubble of unconsciousness and stopped breathing. I was only a few minutes away from my own death. But I fought back.

I wish I’d never met you. Okay maybe that’s only partly true. In many ways you’ve changed my life for the better. During the cancer treatment ten years ago I came up with a big list of things I wanted to do. Afterwards I went out and chased my dreams. The reality was even better than I dared to hope for.

So why did you come back? I thought we were done. I really didn’t need another reminder that life is precious.

When I was in the process of being diagnosed the second time round someone who should have known better suggested the cancer could be terminal. It wasn’t. She told me this devastating news over the phone. I was sitting on my bed on top of my pink stripy duvet at the time. As I cried my life didn’t flash in front of my eyes. Instead I saw images of my future, of what I was still to achieve.

I’m so angry that I’ve had to put almost everything on hold. Hey cancer – in a few hours I get my life back.

Over the past few months I’ve done everything I can to annihilate you. I’ve been having the maximum strength chemo cocktail. It’s been a marathon of pain, sickness and complete exhaustion but I haven’t considered asking for a lower dose.

Chemo has so many petulant demands. It wakes me up in the middle of the night. The poisonous chemicals make me run to the bathroom to throw up. I have no eyebrows now and only six eyelashes. I’ve watched my lovely hair fall out, there’s just a thin covering left to go. Then there have been the bugs, bacteria and infections. I never expected to have an emergency stay in hospital.

And yet, you haven’t managed to break my spirit. I’ve even been able to do some things which I thought were virtually impossible. Just days after my last chemo I managed to get to the Olympic Games. When the cancer treatment is over, I won’t collapse in a heap at the end. I’ll be flicking the V sign at you as I cross the finishing line.

Don’t worry, I won’t forget about you. How could I? There will be tests and scans every few months. When I go to hospital for the results I won’t be able to think about anything else. You’ll be constantly me on my mind.

However I refuse to be scared of what hasn’t happened. Because of you, I appreciate every moment. Well almost every moment. And so because of you I live.

I’ve now beaten you twice. TWICE. I want you to know that if you come back, I will beat you again.

Goodbye stupid cancer.

Helen

My race for life

I blame my friend Rache.

Rache likes to stand out in a crowd

If there’s an occasion that requires us to dress up and look a little bit stupid, then she is at the front of the queue dragging us with her.

When I discovered I had cancer a few months ago, it was Rache’s idea that a group of friends do the Race for Life and that they do it for me. I was honoured and signed up too.

Rache suggested that we wear the dodgy outfits that we had for an 1980s themed weekend away last year. That’s how we ended up at Cheltenham Race Course early on a Sunday morning wearing bright pink tutus and matching legwarmers.

Relax – it’s only 5K

I’d hoped to be able to walk the course but as the event got nearer it was clear that just turning up was going to be a major achievement. The last round of chemo has hit me hard. As well as being tired and in constant pain, I’ve also been feeling sick and very dizzy. It’s taken until now for me to feel half way human.

Even so by the time we walked from the car to the starting line my legs hurt and I was totally out of breath.

It was all very different not too long ago. Before this cancer nightmare I’d do an hour or two of exercise every day. I was so fit that three years ago I ran the same 5K Race for Life in just over thirty minutes.

Doesn’t everyone dress like this on a Sunday?!

As everyone lined up for the race this year I have to admit I was quite jealous.

When my friends set off, I sat down at the side of the race track. I watched as thousands of women in pink snaked their way around the beautiful landscaped course. This event was for Cancer Research and my team managed to raise loads of money. I even persuaded some people to sponsor me just to turn up.

All the girls though did complete the course. I joined the them right at the very very end and together we all crossed the finishing line. I may not have walked far yesterday but I was so exhausted that when I got home I went to bed still wearing the whole outfit and slept for several hours

But I’m very happy that I went along. Plenty of people were taking part in memory of loved ones who’ve died from cancer.

Being there with friends reminded me of just how incredibly lucky I am to have beaten the disease. To be able to actually see them doing the race for me.

My friends had my name on their backs

Afterwards we looked through our photos. There were some shockers of me in silly poses. I asked Rache not to put the really awful ones on Facebook.

“Of course they’re all going up,” she told me. “But I’m ill,” I joked with her. “Yes you had cancer. Had, as in the past tense.”

Brilliant, I’m now well enough to be totally embarrassed by my friends.

It made me realise after all what I’ve been through that is a pretty good feeling. Even though I’d still prefer that those photos never see the light of day!

Rache and Claire with their Race for Life medals

Diamond advice

I was all prepared for the pain that follows chemotherapy. I’d been hypnotised. I’d been given a white paper bag full of pain killers at hospital.

I’d even bought boots stuffed with wheat that you heat in the microwave.

But did any of this do me much good? Not really.

In the days after my last cancer treatment, the pain steadily increased. Chemo makes your joints hurt. Plus I had to inject myself in the thigh to boost my immune system. It helps the bone marrow to produce the all-important white blood cells apparently. It meant that the bones in my legs ached so badly, especially at night.

But when it came to it, I was too scared to swallow the super strong painkillers.

I know they probably would have done the trick but I think that I’m still traumatised by what happened in hospital. How close I came to dying. When I stopped breathing after having an allergic reaction to a drug to relieve the pain after surgery.

Now I was faced with taking something similar. So I chose pain.

Constantly being in agony changes your personality. A few days on from the chemo, and I was finding it hard to even talk about the pain without crying.

Then thanks to the Diamond Jubilee things changed. A bank holiday visitor came bearing a cake topped with red, white and blue icing and some simple advice. I shouldn’t just accept it. I needed to sort out the pain.

It made me realise how I’d become a shadow of myself. Willing to accept a situation that in ordinary life I would have considered unacceptable. So I made a phonecall and with the help of a chemo doctor, I changed my medicine once more.

Within an hour my body relaxed. That night I fell into a long, soft sleep. The best one since the last evil chemo cocktail.

Trying to get some rest at night has been hard. It seems like sleep fights you. Eventually, exhausted, you doze for a matter of minutes. Then the pain screams at you again and you’re awake.

Now all I have to contend with is a whole load of tiredness. And that is lovely. It’s a side effect that’s easy to deal with.

Look into my eyes

“Don’t worry I won’t make you bark like a dog.”

Now those are the kind of reassuring words you want to hear when you’re about to be hypnotised.

I get my next evil chemo cocktail tomorrow. After round one I now know just how bad it’s going to be. To help me cope with the chronic pain I’m trying hypnotherapy. Prescription drugs and daytime TV are not really doing the trick.

I went to hospital for the hypnotherapy. It felt like we were in the basement next to the boiler room. I lay on an examination table covered by rough blue paper to protect me from the previous person’s germs.

The woman who was about to put me under wore academic looking glasses and a conservative suit. She explained that this was nothing like stage hypnotism and that she was medically trained.

Part of me was disappointed that it wasn’t Kenny Craig, the character from Little Britain with too much guy-liner, telling me to look into his eyes.

I was lulled into a trance and told to think of a special location, real or imagined. The first place that came to mind was my old flat in Kiev which looked out onto a row of Soviet-era tower blocks.

Nope, I need somewhere much more exotic so I thought of my perfect desert island.

Apparently the hypnotherapy will help to stop the chemo pain by getting my brain to tell my body to chillax. Or something like that. Whatever happened on that tropical island, it felt lovely. I’ll have a couple more sessions but so far it seems like the pain has eased.

What’s even better is that this is free. It’s what I like to call a cancer bonus. It’s rubbish going through all this but you do get some nice stuff to make it just a little bit easier.

Last week I took part in a pampering session. A charity called Look Good Feel Better holds workshops to help women deal with the changes in appearance caused by the cancer treatment.

I was feeling tired and emotional when I arrived. Insomnia caused by the chemo means that I cry very easily these days.

A group of us sat around a long table. We each had a mirror so I was able to watch the tears rolling down my face. Beauticians gave us all a big bag of expensive make-up and advice on how to do things like draw on eye brows that have fallen out.

By the end of the session, my mood had lifted and I looked like I was ready to party. It was a shame that I was so exhausted and had to go straight home.

With my make- up taken care of, I need to concentrate on my hair.

Since I last updated my blog it has properly started to fall out. If I run my fingers through it, whole handfuls of hair come out. I found it very upsetting yesterday but then I’d only had two hours sleep that night. Today I’m not so worried. I realise that it’s just part of the process of getting well again.

I think it will take a few days for it all to drop out. It’s a good job that I should get to choose my NHS wig tomorrow.  It’s another cancer bonus I’d rather not be getting but I’m quite excited to see what I’ll be wearing for the next few months.

Because of this I’m not dreading chemo number two quite so much. Hopefully I’ll be able to post some pictures so you can see my new look for summer!

Chemo hangover

Imagine running a marathon without any training. Afterwards you go out and drink a load of cheap red wine, the nastier the better. You have a couple of hours sleep when something makes you jump out of bed. As you quickly wake-up, your whole body is in agony.

Well that’s kinda what chemotherapy has been like.

It was more than a week ago that I had the anti-cancer drugs. It’s only now that I’m feeling almost human again.

The hangover from this special toxic cocktail didn’t kick in straight away. The next day it crept up on me slowly, so slowly that I’d thought I’d been lucky. Then wham, it got me.

I’ve been chronically tired. Just sitting in a chair was a massive achievement. Moving around made me breathless and dizzy. It also felt like I was going down with the flu.

Worst of all has been the horrendous pain in my legs and joints. Some of time I could barely stand up or walk. It felt like my legs were going to break but if I didn’t get up occasionally the pain would become more intense.

No matter how much I concentrated on James Bond, it didn’t stop the evil effects of the chemo. Maybe too much time thinking about Daniel Craig had something to do with being breathless and dizzy??

Anyway, along with strong pain killers, I found that plenty of hot water bottles and daytime TV helped the most.

As usual I’m staying with my parents in the countryside. I know this might seem strange but Mum has been microwaving a small bag made out of material and stuffed full of wheat and oats.

When you put this thing where you have the pain, it does actually work. As long as you don’t mind an overpowering smell of warm flapjacks.

In this roll call of horrible reactions something is missing. Amazingly I haven’t felt sick unlike last time. If that changes I’ll have to ditch the hot bag, I’m not sure I could deal with the sickly sweet smell.

Thankfully most of the side effects from my chemo hangover are easing although I’m still tired and breathless.

And yay – I still have hair. It wasn’t supposed to have fallen out by now anyway. Or perhaps that red hospital hat is working its frozen magic.

But there’s something else that’s worrying me. My immune system has been compromised by the chemo. Apparently right now it’s going into free fall and won’t start to recover until the end of the week.

It means that I’m easy prey to germs. If I get an infection it could lead to my chemo being postponed. If there was an Olympic medal for hand washing I’d win it.

The start of my chemo marathon has been bad but I’d feared it would be much worse. So until the next round I’m going to be really enjoying every minute that I feel well.

A bit of pain is no bad thing

I’m feeling much more like me, it’s as if I’m finally waking up from a long nightmare.

Very slowly, I’m getting better. I still sleep plenty but the glimpses of normal life are starting to join up.

It’s strange to have days stretching out in front of me with a whole load of nothing to do.

Before being diagnosed with cancer I packed so much into my already hectic life in London. Now my pace has slooooowed right down.

I’m still too weak to do many things. I can’t walk very far, it’s impossible for me to stand up long enough to cook a meal and I’m too tired to even watch daytime TV.

As for lifting something heavy, like say a kettle, forget it.

Luckily I’m being looked after by my parents who live in the countryside. I’m back in the place where I grew up and I’m sure this is helping with my recovery.

These days I spend great big chunks of time in bed just staring into space. My view of the world is a massive field that leads to a wooded escarpment.

Not long after I came out of hospital, I watched as the light faded from the warm evening sky. Under the cover of dusk, small black objects began to dart around.

A pair of bats seemed to dance outside the window. The light from my bedroom had apparently attracted a feast of moths.

While the bats moved just slightly too fast, making you doubt what you’d seen, the next wildlife surprise was not so speedy.

Sauntering across the field a few days later were four roe deer. The young animals didn’t seem to care who saw them. But then we are in the middle of nowhere.

When the small deer got to the hedge at the edge of the grass, one by one they leapt about six foot into the air and disappeared into the next field.

I’m glad to have distractions like these as last week was awful. Horrendous, in fact.

Since the operation the pain has been bad but bearable. I haven’t been in agony. But that’s all changed.

Intense pain has become a close friend of mine. Day or night, it has wanted to hang out with me.

It has an unpredictable personality. It can be stabbing, shooting or squeezing with a vice like grip. You think you’ve got it under control and then it pops up in a different place.

I knew this was going to be a painful few months but I didn’t realise that second time round the cancer treatment would hurt so much.

It’s thanks to actual real friends that I’ve manage to beat the worst of the pain.

A couple of them suggested things to try, the GP agreed and so another friend drove around late night chemists to get the prescriptions for me.

I’m still in some discomfort. But compared to how terrible it was, it’s such a relief to once again only have to deal with good old fashioned low level pain.

That’s something I can easily cope with.