It’s all too much

I’ve been struggling with fatigue/low mood over the past few days. No doubt a result of doing ‘too much’.

Sometimes too much is just waking up at 7am and getting out of bed. Sometimes too much is tidying the house. There’s no rhyme or reason but medication plays a big part too. Both tamoxifen and zoladex side effects include fatigue so I’m up against it. I don’t sleep very well either and can’t remember the last time I managed an undisturbed night.

Trouble is, I don’t like sitting about doing nothing. That gives you far too much time to think and thinking is bad. I prefer being busy and so take the consequences.

If I’m honest, I’ve had enough of this whole situation I’m in. Occasionally it all gets too much but there’s no running away from it. I’m sick of the worry. I’m sick of the unknown. I’m sick of living my life in 6 month chapters. I wish I didn’t have to watch my friends receive bad news. I wish they didn’t have to die. I wish the reality didn’t have to hit. All this on top of the ‘normal’ trials and tribulations of life.

It all gets too much. It’s a head fuck and there’s only so much you can take. But, you have to carry on regardless. You have to have your moment, pick yourself up and dust yourself down because what other option is there??

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Terminal

This is a blog I wrote for The Metro online…

You’ve got secondary breast cancer. It’s terminal.

Words I’ll never forget and can’t run away from.

The moment I was told I had a terminal illness was the moment something snapped in me and I became a different person. Something inside me clicked and I became stronger, more gutsy, almost invincible. I did what I had to do – I had no choice.

Don’t get me wrong, I was scared – so scared. Terminal means you’re going to die right?! I assumed it would happen almost immediately – not knowing how long my proverbial piece of string was. And all I could think about were my children – they needed me. I couldn’t die.

I’d been poorly for a few months before being rushed into hospital by ambulance one Friday morning – the 2nd of May 2014 to be exact. At first I was told I had breast cancer – that’s fine I thought, people survive. But, 5 days later, just when I thought I’d got my head around that news, I was told that I actually had secondary breast cancer and that the tumour had broken away and metastasised in my bones. My whole skeleton was affected by cancer.

Now we were playing a whole different ball game and the odds were stacked against me. I was terminally ill.

Being given that sort of diagnosis isn’t something you can just forget about. It’s always there, in the back of your mind and at first, it was imprinted on my eyelids every time I closed my eyes! Mostly, I can shut it away in its box but sometimes, it rears its ugly head and the enormity of what I’m living with hits me. It’s all very well living in my oblivious bubble but the reality is ever present.

Not only did I change as a person but my life changed quite a lot too. My attitude changed. I wasn’t prepared to just settle anymore – I wanted to ‘live’ my life. I no longer worried about the little things. I had to learn to listen to my body more, factor in rest days and remember not to use up all my spoons too quickly (https://en.wikipedia.org/wiki/Spoon_theory) – it took me a long time to adjust.

The diagnosis changed how I felt about my children too. I needed to give them experiences, make memories with them and at first, I crammed so much in with them. I didn’t know how long I had so time was of the essence. We did so much in that first year.

Some people close to me struggled with the diagnosis whilst others rallied round. I can’t imagine what receiving that news must be like as a loved one looking in. It’s devastating.

As time has gone on and I’ve had stable scan results, the word terminal is mentioned less and less. It’s ever present, much like a dirty secret I have to carry with me. From the outside I look ‘normal’, I live a ‘normal’ life and that’s how I like it. I’ve always lived obliviously. But occasionally, when I’m explaining my illness to people, it pops up again and people are genuinely shocked when they find out what I’m living with.

Do I think the word terminal has defined me? At first yes.

I was a cancer patient with a terminal diagnosis – I was going to die. I looked like a cancer patient. I lived my life in chapters – a routine of weekly hospital appointments for chemo, daily radiotherapy, 3 monthly scans, scanxiety and hope for good scan results.

As time has gone on, my chapters have increased slightly. My treatment has become 3 monthly and scans have become 6 monthly.

Now, that word doesn’t define me at all. I don’t class myself as terminally ill at the moment. I’m certainly living with a chronic illness but there’s a huge difference. Chronic illness can be managed. Terminal illness is when all medical options have been exhausted and there’s nothing left to try.

Being terminally ill is like living on a knife edge. It can flip at any time and there’s not always any warning, but for me, it’s important not to live in its shadow. Life is for living.

Xx

I’ve a lot going on at the moment. It’s been a tough few weeks and my emotions have been all over the place. I feel a bit overwhelmed if I’m honest – one minute I’m fine, the next I’m feeling deflated.

I think Daisy starting secondary school ignited some anxiety on my part. It was one of those milestones that, four years ago, I didn’t think I’d get to see and I feel so lucky. It was a huge step for her and one I wasn’t sure how she’d react to. It was either going to go very well, or not! As it turns out, she’s taken to it like a duck takes to water and I couldn’t be prouder. The little girl who hated school, had daily meltdowns and struggled with homework has gone and I’ve now got a girl who is blossoming, growing in confidence and signed up to not one but TWO after school clubs – dance and netball!! Long may it last.

My oldest daughter is poorly and is having a few different investigations to try and get to the bottom of what’s wrong with her. That in itself is rather worrying and I feel quite helpless.

To top it all off, there was a wedding at the weekend. I wasn’t invited. They didn’t want me there. I’d be lying if I said it wasn’t hard seeing the photos on fb and as much as I tried not to let it, it upset me. Nobody bothered.

As a result of me trying to keep busy and distract myself, I spent some time in the gym Saturday and absolutely thrashed myself (which I later paid for!). The gym is my happy place and I find that it clears my head from the mess that’s inside it. I’ve also lost myself in books – anywhere is better sometimes.

I’ve realised that I’m quite hard on myself. I feel guilty if I’m too tired to go to the gym. I question myself as a person. I don’t rest half as much as I probably should.

I need to be kinder to myself. I need to remember that I’m taking 5 different types of medication – all with their own set of side effects. I need to remember that you can’t please everyone and not everyone will like you. I need to remember that I try my best and that’s more than enough.

I need to remember what I’m living with and give myself a break.

Xx

What a year!

I turned 40 last week and have finally come down from the cloud I’ve been floating about on. I was so overwhelmed by the love and support and felt incredibly lucky.

I have had the best year and I’d just like to say thank you to everyone who has supported me, helped me tick off something on my list and just followed my antics – it truly means a lot.

My 40 things list was finalised whilst sitting in the pub with my two best friends (there may have been cocktails involved – obvs!) and the idea was to set myself challenges that I’d never done before.

Some were relatively easy to arrange and others took a little more planning. Some I couldn’t have done without the generosity of strangers.

People ask me if I have a favourite but I don’t think I do. I’ve had a whale of a time and each challenge has been completely different.

Learning to ride a horse was something of a childhood dream whereas learning to swim was the stuff of nightmares – but I did it!

I didn’t quite tick off all 40 but the remaining six challenges will just be carried over the next few months.

So now I need to rename the group – maybe ‘Emma’s crazy life’ because let’s be honest, it is a little mad at times!!

Here’s to the next adventure!!

Xx

Lucky

I know that sometimes my blogs can be a bit miserable – explaining the negative side of my illness but after talking to my counsellor last week, I realised that actually, in some ways, it’s changed me and the way I live my life for the better! I mean don’t get me wrong, of course I’d rather not have cancer but sometimes I just feel so lucky.

I’m a much stronger person. I’ve had to be for the children I guess and I hope that I’ve succeeded in keeping their lives as ‘normal’ as possible during this shit storm.

I try not to sweat the small stuff anymore – sometimes I win, sometimes I don’t!

I’ve had people come and people go. I’ve been married and divorced. I’ve experienced kindness from strangers who have then become friends.

I’ve experienced so, so many AMAZING things and taken on challenges that I doubt I would have even thought of in my old life. I feel blessed to have been given those chances. I feel lucky.

In just over a week, I’ll be celebrating my 4th cancerversary. I have nothing spectacular planned this year and I think that’s because I just want time to reflect. Having an incurable diagnosis really messes with your head. Continually.

It’s the not knowing how long your piece of string is and that, that is the reason you should live your life.

Xx

Genetic Testing

When I saw my oncologist in March she told me that the guidelines for genetic testing had changed. She was really positive and made me feel as though, this time, I’d be successful in my application.

I’ve applied twice before, just after diagnosis but was turned down both times – I was too young!

Genetic testing is a blood test given to women with the disease and those at high risk due to a family history of breast cancer. It looks for an inherited ‘faulty’ gene known as BRCA1, BRCA2 or TP53. If you are found to carry the gene, your chances of getting cancer are much higher.

(for more info – https://www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/am-i-risk/breast-cancer-in-families/genetic-testing)

The faulty gene also has a 50% chance of being passed to your children and the risk is the same for both boys and girls.

My children are the reason I want to be tested but, because I have no family history of breast cancer – I’m seemingly the first one, I’m not eligible for testing and this frustrates me. They say that my risk of carrying the gene is less that 10% but how do they know that?!

What I don’t understand is that someone, somewhere has to be the first person to get the disease. So, even if you have a family history and 5 women in that family have had cancer – someone was first.

That person could be me. I could be the first. I could be walking around with that faulty gene and could have already passed it to my children.

I don’t want my children to have to go through what I’m going through and even more so when it’s unlikely I’ll be here to support them.

My only option now is to fund it myself but it’s not cheap. My oncologist told me that it could be anything between £1400-£2000. There’s no real urgency for the test while I’m well so I’ll start saving but I can’t not investigate, I can’t not know if I carry the gene.

I owe it to my children.

Xx

What was..

Today hasn’t been a good day. In fact this weekend has been hard. My energy levels are low. My mood is low. This happens every so often, it’s one of the waves I’ve spoken about before. I just have to ride it.

I’m very tearful and can burst into tears for no apparent reason. Although, deep down, I’m sure there’s many a reason. I was talking to a friend from my cancer group, telling her how I felt and she told me that we’re dealing with a cosmos of shit and we’re allowed weepy, low days. She’s right – we don’t need a reason.

Trouble is, these waves throw everything at me. I think about my past – about the life I had. I was settled, had plans for the future, was on a nice, steady journey. I had two families, lots of friends.

I made the mistake of looking at my wedding photos this afternoon. I don’t recognise myself. The pictures are full of strangers. And sadly, three of my loved ones in those photos are no longer here.

Four years ago. That’s all. My world was completely flipped and now I’m completely different to the person I was pre cancer. I became stronger, less likely to put up with bullshit. It’s me versus the world. Sometimes it gets very lonely.

I feel like I’m grieving for the life I once had. The plans I had made. The baby I wanted. Cancer snatches so much away from you.

I now live my life in six monthly chapters. I don’t like to make plans outside of that time just in case it’s tempting fate.

I can’t always put how I’m feeling into words. I just feel sad.

I was so poorly and given a 6 month prognosis but in just a few weeks I’ll be celebrating my fourth cancerversary. Amazing I know but also a bit of a mind fuck – am I now skating on thin ice? Has my proverbial piece of string got shorter? How many more good scan results will I get?

It’s so hard and I’m so tired of it all.

Xx