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.

Chemo#3

I have a confession to make. The last two blog posts have been written under the influence. I didn’t realise it but both times I was on a steroid high. Chemo#1 and chemo#2 have gone something like this…

Tuesday – Have chemo along with a load of steroids to help my body cope with the toxic side effects. Tuesday night – Insomnia.

Wednesday – Feel so energetic that I go for a little run. I know. A run – the day after chemo! Wednesday night – Horrific nightmares followed by insomnia.

Thursday – Feel miserable.

Thursday night – Sleep returns to normal.

Friday – Wake up feeling like me. No high, no low, no desire to do any running.

On Wednesdays I felt amazing and was bursting with energy. The real problem was with that awful Thursday comedown. Both times it’s hit me hard and I have months of treatment to go. I couldn’t work out what was happening until I mentioned my mood swings to a doctor.

If I really needed to have so many steroids then I’d just deal with it but why put up with something that can be changed?

Red band spells steroid danger

Before I started chemo#3 I asked if I could get the moody drugs reduced. It caused a bit of a kafuffle. Not many people opt for this. Steroids are used to reduce this risk of your body from having a bad reaction to chemo; like that patient did last week. Apparently it’s rare but a really bad reaction can be deadly. Cutting back on the steroids was a gamble although the doctor on the ward preferred to call it a calculated risk.

I knew that my body copes well with chemo. Oh yes, it’s one of my hidden talents. But I still wasn’t sure and neither were the medical staff. In the end we agreed that I’d have half the usual steroids and be closely monitored.

If something scary is going to happen it will do so in the first 15 minutes or so. I wanted to be awake to watch and worry however like before, the chemo cocktail put me straight to sleep. I didn’t even have time to take my wig off. I was relieved to have my friend, Chantal the flower girl at my side.

So what happened? Nothing. I was totally fine and slept all the way through the critical period and beyond. I’m still writing this after all!

It was quite stressful though. Not exactly what you need. I’m trying hard not to turn chemo into a big deal. I want it to be just part of weekly life.

As I’m keeping everything normal I offered to work an early morning shift before chemo in the afternoon. Getting up at 4.30am wasn’t great. But that was the whole point. I was playing mind games with myself and it worked. My brain was more annoyed about the stupidly early hour rather than the prospect of chemo.

It was a busy morning at work doing live TV reports and interviews for the BBC News Channel. I didn’t have time to think about my impending trip to the chemo cocktail bar.

I can see why my consultants have encouraged me to continue to work if I’m able to. The morning made me realise more than ever just how important it is to do the things you really enjoy. It gives you a sense of purpose that you’ll never get from a trip to hospital.

Also work is a big part of my identity. I may have cancer but that doesn’t define who I am. Being active is another part of my identity which has nothing to do with the disease. Earlier I went out for some exercise. I used to be very sporty and I’m keen to get fit again. Playing netball again is on my List for Living which I’m still working on.

I think that I’m now having much less of a steroid rush. The insomnia wasn’t so bad last night. The steroid highs made me feel like I had boundless energy. Today I managed to jog for two and half minutes with great difficulty. It’s good not to feel so hyper but just happy, tired and rubbish at running again.