Meh..

Arggghhhhhh……

I’m feeling angry. It’s a wave and I just have to ride it but boy I’m seeing red. Stupid. Poxy. Cancer.

I’m angry at the enormity of the task in hand.

I’m angry about the fact that I’ll get poorly again.

I’m angry that I’ll have to leave my children.

I’m angry that they’ll have to lose their Mum.

I’m angry at the unfairness of it all.

I’m angry at how people react to the diagnosis. How they disappear.

I’m angry that this afternoon I had a frank conversation with my oldest daughter about planning my funeral.

I’m angry for friends that are going through this too.

Why me? Why us? Why them?

Xx

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Goodbye 2017

It’s been one hell of a year and I’ve had a blast!

January saw me going to Belfast for the first time to meet up with one of my YBCN friends – Melanie. We applied to go on Big Brother and although we weren’t successful, we had a fab day seeing the sights and getting to know one another.

A couple of weeks later, February 7th to be exact, saw me rushing to A&E with appendicitis. It was whipped out the next day and I spent a couple of hilarious nights in hospital partying with the elderly ladies on my ward!

I went to the Brit award show and saw Bruno Mars and Adele in concert. I met Simon Cowell, David Williams and Amanda Holden at Britain’s Got Talent.

I took the kids to Butlins for the weekend and was lucky enough to visit New York – somewhere I never thought I’d see.

July saw me start my ’40 things before 40′ challenge. I’m slowly ticking things off of my list – horse riding, turning the Christmas lights on in town, pretending to be a firefighter, reading 40 books and also getting my own radio show on Radio Dacorum! My 2 hour slot is a little bit of escapism and has the same effect on me as going to the gym – it really helps my mental well being.

I went to 2 balls. The first was a wedding dress ball in aid of the Hospice of St Francis. The second was The Pink Ribbon Ball in aid of Breast Cancer Now and it was here that I met Nick Knowles 😍 I’d had my make up done professionally and with the help of a very special lady, bought a beautiful ball gown to wear. I felt amazing.

I had 2 sets of scans and thankfully got stable results both times. As the years go on, scanxiety is getting worse. I guess it’s the not knowing how long the proverbial piece of string is. Nothing I can do but keep on keeping on. I’ve had 40 hospital/doctor appointments – zoladex, Port flushes, Bone juice, cardio and oncology.

I also did a lot of media work on behalf of both Breast Cancer Now and Macmillan. I made some video diaries on life with SBC and manned the BCN twitter account for a few hours. I appeared on the BBC for Macmillan and also on their news app. I also wrote a guest blog for the Huffington Post explaining why I never wanted to know my prognosis.

I call myself a media whore but I mean it in an affectionate way. I never set out to be so vocal about my illness but it’s become important to me to shout about it, to raise awareness.

My 2 best friends, Michelle and Rebecca are the bestest friends a girl could ask for. They’ve been by my side through thick and thin, they’ve been a shoulder to cry on and they don’t mind when I make them dress up in all manor of luminous tutus!! I’d truly be lost without them.

I’ve also made so many new friends and the support I get from each and every one of them blows me away continually.

I’ve also seen a couple of milestones – my oldest daughter left to go to university and I had to apply for my youngest daughters secondary school. Both things I wasn’t sure I’d get to see/do when I was first diagnosed. I’m also watching my son grow into a fantastic young man, a keen rugby player who is getting on well academically.

Things that are taken for granted. Things that three and a half years ago, I was unsure that I’d see.

So, on that note, I’d like to wish you all a very happy new year. I’m counting my blessings and feel lucky to have made another year – many of my friends didn’t. Tonight I’ll be raising a glass for those we’ve lost.

Love your life, love the people who choose to share it with you and never take anything for granted.

Thank you for being there xx

It’s that time again..

Tonight I had a warm mince pie with cream for my tea. I washed it down with a Baileys. Why? Because I can!!

Tomorrow is results day. It’s been a long time coming and the past 2.5 weeks has felt like months. It’s so hard to stay focused on anything and although I’m getting quite good at shoving the worry back in its box, it creeps out when you least expect it.

Today I’ve been mostly a little wired. A little hyperactive. I’m not sure if I don’t give any shits or if I’m shitting myself. I think it’s the latter. My positive side of my brain is carefree and telling me that it is what is is – I can’t change it so there’s little point in worrying. The not so positive part of my brain is expecting the worst – I always do as I think it won’t be such a shock if it was bad news.

Bad news being that I’ve had progression.

I’m almost 4 years along this bumpy road. Bumpy doesn’t really cut it – imagine a road made of rocks, with huge potholes and sheep and arseholes who don’t bother to indicate. That’s what I mean by bumpy!!

You’re all aware that I’ve never asked for my prognosis but I’m well aware that 4 years is pretty darn good – statistically talking. Is my ice starting to wear thin? Who knows.

Lovely friends tell me that I look so well and whilst I appreciate that, I know only too well that how you look isn’t a reflection of what’s going on inside. I’ve recently had 2 friends from my cancer group receive bad news. They were roughly (our cancers are slightly different) the same position in the road as me and looked and felt perfectly well. I’d be lying if I said that their news hadn’t given me the jitters.

I’m not sure if the fact it’s almost Christmas is a blessing or not. It’s kept me busy and given me something to concentrate on which is good. Its also a very emotional time of year for me. Each one is a blessing – more so because I wasn’t expected to see Christmas ’14.

It’s going to go one of two ways tomorrow but no matter what, Christmas is Christmas and we’re going to have a fab one!!

Xx

Don’t you know who I am?!!!

Yesterday I had a rather heated discussion on a local community page I’m a member of. It’s a long story but I was only sticking up for something I love.

I was harassed, belittled and accused of being a bully. I didn’t get personal (apart from telling someone to wind their neck in!) and I took quite a battering!! There was one thing that was said though, that’s cut quite deep.

I was told I’m full of self importance. That upsets me more than being called a bully.

I never set out to be quite so vocal about my illness. I didn’t plan to share my story, to raise awareness or do the media work I’ve done. It just kind of happened. In fact I’ve always said I feel kind of lucky to have had the opportunities I’ve had – I wouldn’t have, had I been ‘normal’ and not diagnosed with secondary breast cancer.

I’ve never asked people to send me messages about their family members, I don’t expect people to talk to me when I’m out shopping and I don’t ask people to ask me for advice. But they do.

I’ve always said if I can help just one person then I’ll be happy and I’d like to think I’ve helped those people.

But to have what I do interpreted as self important is quite upsetting.

I am the first person to take the mickey out of myself. I’m just trying to live my life and have a laugh along the way. I’m not harming anyone.

I understand that not everyone would feel comfortable doing things the way I do and that’s fair enough. But I wouldn’t criticise your choices and don’t expect you to criticise mine.

Believe it or not, I find it quite cringeworthy being told I’m an inspiration- I’ve done nothing inspirational. I’m just trying to live my life as normally as possible for my children so they don’t have to live their childhood under the shadow of cancer.

Nor am I brave. I’m shit scared most of the time but have learnt how to keep a lid on it – see above ^^^^.

So I’m a little upset today because of that comment. It makes me feel like closing the door as I hate to think that people think I’m up my own own arse.

Don’t you know who I am?!!

Xx

Prog-no-thanks

The first thing people ask when you tell them you have incurable cancer is ‘what’s your prognosis?’

It used to surprise me but not any more. It’s become the norm. There are plenty of other questions that could be asked – ‘how are you feeling?’, ‘can I do anything to help?’, even – ‘do you need a hug?’ Anything but ‘so, how long until the doctors think you’re going to die?’!!

I have secondary breast cancer. I know that I’m going to die sooner than I should. What I don’t want to know is a rough estimation of when.

From the day I was diagnosed (2/5/14) I told my oncologist that I didn’t want to know my prognosis. Just as I didn’t want to know the ins and outs of my particular cancer. I knew that the grade 1 tumour in my breast broke away and set up camp in my bones – making me incurable. That was enough.

I didn’t care to know about the nitty gritty. I wanted to live obliviously.

And I did pretty much. Until 2016, when booking a holiday abroad meant that I needed travel insurance. This is a lengthy process for anyone living with cancer and you have to answer a lot of questions. One of the things they wanted to know was how many bones are affected? I didn’t know so was told I needed to find out from my oncologist (plucking the no.3 from nowhere didn’t work!).

I wish I’d never had to ask that question. I will never un hear the answer. Every single bone in my body is affected by the cancer. I have extensive bone mets.

And this is the exact reason I don’t want to know my prognosis.

You will never un hear those words.

How do you deal with knowing that limited time frame as well as everything else you have going on in your head that comes with a cancer diagnosis? Surely you’d count down the days, months and years and cram a million and one things into that time period. What happens though, when you get to 0 and you’re still alive and kicking? What if you don’t make it – would you feel cheated? I find it hard to fathom if I’m honest.

A prognosis is based on statistics taken from a group of people in a similar situation to yours. But, everyone is different. Everyone reacts to medicine differently. What works for one might not work for another. We are all individual.

I understand that my approach is not for everyone but it’s how I manage living with my illness. It allows me compartmentalise, to carry on regardless and to keep things as ‘normal’ as possible for my children.

Just another day

October is Breast Cancer awareness month. The shops shove a pink ribbon on garish items and a small amount of the sales are donated to charity.

Just one day, half way through the month is dedicated to Secondary Breast Cancer. One day.

I was just 35 years old when I was diagnosed with breast cancer on the 2/5/14. Five days later I was told that it had spread to my bones. I had secondary breast cancer.

Secondary breast cancer is also known as stage 4 or metastatic breast cancer. The cancerous cells break away from the original tumour and travel through the body via the blood stream or lymphatic system and lodge in the bones, liver, lungs or brain – sometimes more than one place.

I have no family history of breast cancer and if I’m honest, I had no idea that younger women could even get it! I certainly hadn’t heard of secondary breast cancer.

The rest of 2014 passed in a blur of hospital appointments, scans, chemo and radiotherapy. I was very poorly at first which saw me spend 3 weeks in hospital and whilst there I had 12 blood transfusions and 3 platelet ones. I later found out that I wasn’t expected to make it past Christmas.

But, almost 3 and a half years later, I’m still here and living my life in six month chapters, between scans. I don’t really like to plan anything out of this time frame as I feel it would be tempting fate. I’m due scans (MRI and CT) at the end of November so I’m starting to slow life down. There’s a 2 week wait for results and I dread the appointment as it could be the day my world comes crashing down – being told I’ve got progression.

Having a cancer diagnosis can be tough at times. And lonely. It changes you as a person. You have to find a new normal. You almost grieve for the life you had yet it’s so hard to look forward as the future is so uncertain. You just live each day as it comes. You have to deal with the waves of emotion that sneak up and overwhelm you. The emotions, thoughts and feelings that go around in my head can be exhausting. You also have to deal with the side effects from the medication that you have to take to stay alive – the fatigue, the pain, the loss of appetite, numbness in your hands and feet, hot flushes and night sweats thanks to the medically induced menopause you’re in and the worst one of all – losing your hair.

I found my new normal and it’s not too bad. In fact I feel extremely lucky in my cancer journey so far. Physically I get tired much more than I used to and have to be mindful not to overdo it. I have to have rest days where I literally do nothing. Mentally it’s a battle of wills, trying not to let the dark thoughts in. But mostly, I live my life oblivious to my illness and keep things as normal as possible for the children. Every so often the fact I have cancer creeps up on me but I’ve learnt to deal with it, shove it back in it’s box and carry on regardless!

Secondary breast cancer is treatable but not curable. I will never be clear of it, instead, I will be treated until all treatment options have been exhausted, and then………I’m sure you’ve got the idea.

This is why it’s so important to me to be able to work with Breast Cancer Now. To help them raise awareness and funds for ground breaking research which means that one day, hopefully, there will be nothing incurable to write about.

Xx

Alrighty then..

People really should consider what they say to people before they say it. I mean, I know that things get said in the heat of the moment but what happened to me on Friday night was different. I was subjected to a barrage of verbal abuse by a lady I don't know other than her being in my '40 things' group. She also chose to do this publicly, on another group I so happen to be an admin of – she didn't realise this when she posted!!

The lady in question very kindly said that I could use her caravan in Norfolk for a week in August. She told me she only lets it out to family and was happy to see it being used as it, and I quote, 'sits empty way too much'. Great stuff.

I was looking forward to the break, a change of scenery is always good and as I couldn't afford a holiday this year, it was working out well. We sent a few Facebook messages back and forth and I thanked her for her kind offer.

But then, last week, I found out that my car was being taken away. This kind of changed everything for me and I spent the next couple of days in tears, trying to weigh everything up. I decided that the holiday wasn't a necessity and that the money I would've spent over the week would be better going towards trying to get insured on my daughters car or public transport. I was gutted.

I messaged the lady and apologised for not being able to make it. I explained my reasons why and she replied 'thanks for letting me know'. I thought that was it. I was wrong, very wrong.

The next evening, Friday, she posted in the group that she's not doing anymore good deeds because she'd been let down by someone (me). I commented on her post and explained again that I was sorry and my reasons for not being able to go. She then released a whole barrage of abuse on me. Apparently I use the cancer card to be 'an ungrateful bitch'! I'm thoughtless, ungrateful and selfish. I'm also a brat who 'thrives on using their illness to get attention'. Apparently other people will get wise to me, like she has.

I'm not sure that I deserved this much abuse over not being able to use her caravan as planned.

Her words have stung though and have made me feel as though I need to explain myself and question myself. I'm feeling pretty vulnerable at the moment anyway so it doesn't take much to knock me. But, after dwelling on it the past couple of days I've decided that this blog will be the end of it and I have one thing to say…….

Xx