Chemo#14

Hooray hooray it’s the end of my chemo holiday. It was lovely having a week off. What amazing weather for a spring break.

After treatment was cancelled last week due to a bad skin reaction I was given some new medicine to take which was knock-out. Literally. I was so drowsy. But it seemed to have done the trick.

After a week off from the usually toxic drugs I thought that I’d feel great but it was only on the last day or so that I started to feel normal-ish. It was just like a typical vacation where you only start to relax, just as you’re about to go home.

I worked over the weekend and ended up reporting on the London Marathon for the BBC News Channel. I enjoy working as it’s time-out from all the cancery stuff.  Physically it’s hard but mentally it’s brilliant to step back into my old life. To a time before I needed all this treatment again.

As I was still on a chemo holiday I decided to try something that I’d been thinking about for while. I had a CFD – a cancer free day. I didn’t mention the disease and if anyone spoke to me about it, I just told them about the CFD. I didn’t mind talking about the chemo and how I was feeling but not any of the bigger things.

I’m coming to terms with my advanced cancer in my own way. I think about it a lot but when I’m not, I don’t want to talk about the horribleness of my situation. People want there to be a happy ending. I don’t like having to say that, no, I’m not going to beat the disease, it’s going to kill me. Despite all what I’m going though I still enjoy life pretty much most of the time. However these conversations can leave me feeling sad. A CFD is sort of like a mini-break for the mind. In the future I’m going to be having a lot more of these days!

On my way home from the BBC, I saw several runners on the tube. All skimpy lycra and shiny new medals. I too was exhausted. Considering how ill the treatment makes me feel, being able to do a shift at work is a big achievement. I ended the day tired but smiling. It was like I’d just done a marathon myself.

I was so glad when I was told that I was well enough for chemo to resume. The rash on my arm had cleared up nicely although we may never know for sure what caused it.

This week I had my chemo cocktail with Rache, my friend who I’ve known since we did A Levels together. She’s the one who loves a bit of fancy dress. I was delighted that we got an upgrade at hospital. I had my favourite side room without a view, as everywhere else was full.

Rache didn’t want to miss a call so she came prepared. She actually admitted that she’d left mobile number five at home!

My friend has visited me in hospital before but she’d never been to this part of the building so I explained where everything was.

Perhaps most importantly I pointed out that the hot drinks trolley was parked in the corridor, just outside the room. Rache said that she didn’t need to know as she doesn’t drink tea or coffee. I replied that I was showing her in case she fancied making me a drink, you know, the patient that’s lying in bed all hooked up to a drip!

We were having such a good time that it was easy to forget why we were there. It was lucky that we were in a private room on our own as we spent most of the time laughing. It was good way to end my chemo-cation.

Chemo holiday

Sometimes you should be careful what you wish for because it might just come true.

In my last blog post, I wrote that momentary I considered giving up but soon afterwards I realised that I wanted to continue. How ironic.

I’m now on a chemo holiday. It wasn’t my choice to skip treatment. This is an enforced break.

Last time I listed all the chemo cons. Well, there was one that I forgot to add. I had a nasty rash on my arm that itched like hell. It looked like a big patch of eczema, something I used to get as a child. It didn’t seem too serious. But when I turned up at hospital this week, my doctors thought it was.

Looking at it with them I had to admit it did seem quite red and angry. They don’t know what caused it to suddenly flare up however they’re sure there is a chemo connection.

After putting up with all the awful side effects I can’t believe that a stupid rash has postponed my chemo cocktail. Hopefully it’ll be better by next week and I’ll be able to have the five remaining sessions.

I should feel happy that about my chemo holiday but I’m not. I’m very disappointed.

Mentally I was all ready for another dose of the toxic drugs. I just want to complete this course of treatment. I’m so annoyed at the delay. Ever since the start of the year I’ve been working towards the end date in mid-May. I thought I had less than a month to go. My chemo has now gone into extra time and the final date has moved a bit further away from my grasp.

Also I don’t like my routine being disrupted. When you have cancer your life is changed for ever. At times it seems to spin out of your control. There are big question marks against all the things you thought were certain.

And yet there is one thing you can reply on. The regularity of your treatment. The chemo sessions and all the other associated appointments are comforting. Having a medical schedule gives your life shape and it gives you back some control.

After wondering whether I wanted to continue with the anti-cancer treatment, I’m more sure than ever that it’s what I want. Thanks for all the messages of encouragement and support, sorry I’m too tired to reply to everyone. I loved the way that after saying that I’d briefly thought about giving up, there was a massive noooooooo from the internet!

This chemo-cation has made me even more determined to carry on. When you’re told you can’t have something it makes you want it even more. I know that I’m lucky to still have options and I want to make the most of every moment. I’m more confident than ever that I have the strength to continue.

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#12

This is Ruby’s chair. Ruby is one of the regulars at the chemo cocktail bar. Like many of the others, she’s twice my age.

I’m calling her Ruby although this isn’t actually her real name. I don’t want to identify her but I wanted to write about something she said.

After the drama of my last visit, my chemo treatment has now become almost an all-day affair. While I always have a friend or two on hand to keep me company- this week it was Kath and Chantal – Ruby is often alone. But don’t go thinking that Ruby is a helpless old lady.

This week hospital was the busiest I’ve ever seen it. It was late morning when we arrived. There wasn’t a spare chair in the place.I was given a bed that was free on one of the main chemo wards. Everyone around me had more miles on the clock and seemed much sicker or sleepier. I offered the bed to the patients who had chairs in case anyone else fancied it. I had no takers.

The bed proved to be a perfect picnic table. We laid out our lunch on the white sheets. Ruby had also come prepared. She too preferred not to eat the hospital food. With one arm attached to an IV drip she wasted no time in calling Kath over to help get her lunch out of her bag. My friend arranged it on the table in front of Ruby.

“Can you get me a coffee now please?” She then said to Kath.

It wasn’t a question. Ruby asked in way that was friendly but also confident and assertive. She didn’t apologise or prefix it with a “hope you don’t mind”, or “can you do me a big favour”. She knew it wasn’t too much to ask. Ruby was hooked up to the drip which was plugged into an electricity socket at the wall. She had toxic drugs dancing through her veins. While Kath was fit, healthy and just visiting.

I’ve known Ruby for a while. She has absolutely no problem in asking anyone who’s passing to get her a coffee – milk, three sugars – from the trolley in the corridor.

It might seem like such a small thing but having this sort of no nonsense approach is so important when it comes to your health. I’d been thinking about this a lot after a woman had left a comment on the blog to say that she was about to get tested for ovarian cancer. Her husband had heard an interview I’d done on the radio and recognised some of the symptoms she was having.

In case you’re wondering some of the main ones are bloating, eating less but feeling fuller and abdominal pain.

The problem is that these symptoms are so vague. It can mean it’s difficult to get diagnosed. You need to be determined especially when you suspect something is seriously wrong.

Last month I met an inspirational woman who had ovarian cancer a while ago. When she first had the symptoms, she went to her GP. He said she’d probably pulled a muscle and wouldn’t need any tests. She told him that he was talking rubbish or words to that effect!

Soon after the cancer was discovered. She had a better chance of surviving because she didn’t accept what her GP had said. It just shows how powerful it can be, not taking no for an answer. It’s the kind of attitude that could help to save your life.