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.

Disco dots to the rescue?

When I first started this blog back in March I wondered if I’d run out of things to write about but somehow that hasn’t happened. Well, not until last week.

I felt worn out. I had bursts of energy but they tended to quickly fizzle out after an hour or so. Most of the time I was so tired that I wasn’t able to think about much else apart from getting through each day.

The chemotherapy may be over but I seem to use up much of that energy on medical appointments in London. The surgery I had to get rid of the cancer was extensive and it’s caused me plenty of problems. Nothing too serious, just stuff that needs sorting out.

Of course experiencing all this fatigue is frustrating but pretty normal. Last week, one of the doctors at hospital said I should think of cancer treatment as like running a marathon. You focus on just getting through each medical mile. Exhaustion is just one of the many horrendous side effects. It’s only when you stop that it really hits you.

Weeks after crossing the chemo finishing line it still feels as if I’m sitting on the pavement covered in a silver foil cape, too shattered to move. I want to have a normal life instead of watching it pass me by.

The doctor suggested that I keep a tiredness diary. I was supposed to write down everything I did for a week so I could see if I was doing too much or too little. Each day was divided up into two hour chunks.

I started the diary on Wednesday and gave up on Thursday. It was far too depressing. It made me realise that at one point I was in bed for 17 hours in a row.

So I tried something else.

I gave acupuncture another go. It was one of the things that helped me cope with being poisoned by the toxic cocktails. I still don’t understand why it should work but several of my cancer fighter friends have said that it’s really given them a boost after chemo.

With a checked shirt and a silver hippy necklace, the acupuncturist took my hand as soon as entered the room. He was trying to establish my energy flow, I think, or something like that. I tried not to look too sceptical but he just smiled at me serenely

I lay back on the couch. Through a window in the ceiling I watched clouds slowly drift overhead as he stuck the skinny pins in my hands and feet.

Black dots began to dance in front of my eyes. The spots weren’t in the sky but some kind of optical illusion. Last time I had acupuncture loads of these tiny blobs seemed to rush across my eyes like a river. Now there wasn’t so many of them. These spots did a kind of side to side shuffle. It should have been quite freaky but I felt calm as I concentrated on the disco dots.

After about twenty minutes they disappeared and in their place were tiny white flickers of light that flashed frantically.

“Do you want me to do something that will really get things going? It’ll be painful to start with,” he warned.

And it was. Long needles were pushed hard into my thumbs and big toes, right near to the nails. Really big misshapen spots appeared and slowly swam across my eyes. This mirage also faded after a while.

I’d like to say that I walked out of there with a spring in my step but I didn’t. Instead I went home for a rest and then got the last train back to my parents’ house in the countryside.

That night I had the best sleep in a long time. I woke up to find that the extreme tiredness had gone. It was like someone had just flicked a switch.

Since then it’s been incredible. For the past few days I’ve felt energetic, alert and much more like me again. Okay, I’m no where near back to normal but I’m able to do things like walk without feeling as if I might collapse.

Why the sudden change? Maybe it was the acupuncture. The disco dancing dots. Perhaps it was being back with my parents.

Whatever it was, I don’t care, I just hope it lasts.

What now?

The countdown is on to my last chemo. There are just days to go. I’ve dreamt about this moment for a very long time. I really don’t want to get ill and delay my final treatment. After this I’m done with the cancer. But there’s been a scary new development.

For the past week I’ve been in the danger zone. This is when my immune system takes a violent nosedive and because of this I’ve kept myself pretty much isolated from the outside world. Away from many of the everyday germs.

Following my last chemo I had that horrible hurty injection. It boosts your immune system but it makes you feel like you have flu and arthritis. I put up with the pain as I knew it would protect me.

When I had that really bad infection a few weeks ago I was advised to steer clear of certain risky foods so I carried on with this special diet. Salad, cold meat, milk that’s been opened for more than a day, yogurt, soft cheese, fruit and vegetables that haven’t been peeled and many others were on my banned list.

So I thought I’d be safe but I was wrong.

It turns out that I have MRSA. As in the superbug that kills hundreds of people each year, as in the bacteria that’s resistant to some types of antibiotics.

After my GP rang me with the news, the next thing I did was have a look on the internet. I know I know it was a stupid move. I was scared by what I saw but I did find this piece of advice: “The best thing to do is to avoid becoming infected with the bacteria.” Yeah, thanks for that.

Anyway, concerned by what I’d read I called one of my consultants. He put my mind at rest. I may feel overwhelmingly tired and have all the other horrible side effects of the chemo but I don’t have any of the worrying symptoms that would mean I have full blown MRSA. It’s unlikely to become critical.

Apparently many people have the superbug but most will never get ill from it or even realise that they have it. My case is a bit different so I’m back on antibiotics again. Plus I have a special pink shower gel which is stuffed full of ingredients with long medical names.

As long as the MRSA doesn’t turn into something serious before it’s sorted then I’ll be okay. My last chemo should be able to go ahead as planned.

Just as I’m so close to finishing my treatment I can’t believe that something else has come along but after all that I’ve been through I won’t let what is only a small problem get in my way.

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

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.