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

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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

Breast cancer isn’t a game!

Every year is the same. Someone starts circulating those stupid Facebook games that supposedly raise awareness of breast cancer.

You know the ones – post a piece of fruit to show your relationship status or post a make believe holiday destination which is determined by your birth date. But, and this is the all important rule……don’t tell the men?!!!!!

I mean really!! I can’t tell you how incensed these games make me and have posted many times on my Facebook page, asking – no telling, my friends not to send me invites to play. But still, some do.

It’s not that I’m boring or have no sense of humour. I just don’t find these games appropriate. Cancer isn’t a game.

Cancer is real and it’s devastating. Cancer strips families of their loved ones. Friends lose friends. I should know – I’m living with secondary breast cancer and will eventually succumb to it. I’ve lost many friends.

These games supposedly raise awareness but I want to know how? Do they show the correct way to feel your boobs? Do they make you aware of the subtle changes that might happen to your breast? Do they even make you think of cancer?

The answer is no.

Maybe, for a fleeting second you think you’re doing a great thing , girl power and all that. You probably know someone who has had a diagnosis and think it looks good taking part. It doesn’t.

And why can’t the men be involved? They are also at risk of breast cancer. They’re also likely to feel anything untoward whilst having a fondle of yours!

Anyone diagnosed or indeed living with a breast cancer diagnosis would much rather you shared graphics of how to check yourself – TLC – Touch, Look, Check. We’d much rather you share videos from breast cancer charities. We’d much rather you shared the reality of breast cancer.

So, next time you get invited to take part, maybe stop and think. I’m not suggesting you can’t play along, each to their own and all that, but how much awareness is it honestly raising??

Xx

It’s all messy

It’s been a tough week mentally this week. My head has felt messy and fuzzy and I’ve not been able to really decipher what’s going around in it. I think it’s a bit of everything – my illness, the reality, the guilt, fatigue, the what ifs and the whys.

It’s during these times when I don’t particularly want to be around anyone. I’m not necessarily grumpy, I just don’t have the energy to give my attention to someone or something. Preferring my own company and space.

I haven’t even been able to read and normally I can lose myself for hours in a book! It’s been a something and nothing week.

I attended a funeral on Tuesday. A friend from my support group. I’m not going to lie, it was tough. I’m pleased I went but it was too close to home. Your mind wanders so easily. It becomes all too real.

I’m also very tired and that doesn’t help. Some nights I sleep better than others but mostly I toss and turn, rolling from my side of the bed to the ‘cold’ side and then back again once it gets warm. It’s been a struggle waking up in the morning and I’ve really had to push myself to do anything this week. I just have to carry on, for the kids mostly, no matter what’s going on in my head. It’s hard to explain but if I had to draw it, it’d look like this…..

I’m also due Zometa (or, as I call it, bone juice!) http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/zoledronic-acid. I’m having it every 3 months now so it’s been a while and I’ve noticed these ‘come downs’ before. Roll on Monday!!

Sometimes it’s rubbish being me.

But, there’s only one thing for it…

Xx

The reality

As most of you know, I’m a member (and one of the admin team) of YBCN – the Younger Breast Cancer Network. Currently we have just over 3500 women, all under the age of 45 and all living with varying diagnoses of breast cancer.

I’m a member of the ‘living with’ group – we have all been diagnosed with secondaries (our cancer has spread from the breast into organs and/or bones). Our cancer is incurable.

The past few months have been tough. Really tough.

You quickly form ‘virtual’ friendships, welcoming new ladies into our fold on a (sometimes) daily basis. We talk about all sorts – chemo, side effects, the best holiday insurance company (we all love a holiday!) and many other things besides. It’s somewhere safe to vent, cry and share our scan results.

Many of my friends on the group I’ve never met, but there are some of us that meet up a few times a year for lunch, normally in London. I always liken these meetings to the witches conference in the film ‘The Witches’ except we don’t pull our skin off!! There’s something about the group of us sitting there, just like anyone else, that makes me want to chuckle. From the outside, we are just regular women but we all share the same secret.

It’s hard not to forge special relationships and some of the ladies become close friends – I’m off to Belfast in a few weeks with two of them which will be a blast!!

But, with all the good comes some bad. The past few months have been extremely tough going because we have sadly lost a lot of our friends. It’s inevitable in a group such as ours that this will happen, and it does frequently, but just lately it feels as though it has been relentless. It truly rocks the group.

And it never gets any easier.

But, that said, I wouldn’t change a thing. I would never leave the group. The support I get from the ladies, who understand exactly what I’m going through, totally outweighs the sad times.

Some deaths hit harder than others but it’s at these moments we all come together – united, strong, brave women that I’m proud to be one of.

Xx

Halfway point

I’m halfway through my 40 things year – in fact it’s almost 7 months through! I honestly don’t know where that time has gone?! But it’s been brilliant!

Slowly but surely, I’m ticking things off the list – horse riding, read 40 books, trip to Paris, be a DJ, drive a super car and do a shift in Tesco to name a few.

I’m a little behind with my reading. I’ve just finished book 18 and at this point I’d really like to have been at about book 20. But, I have a stack of books waiting on the bookshelf so I’m sure I’ll catch up.

My Tuesday morning Radio Dacorum show is going well. I get to play whatever I want – mostly 80’s although I do chuck a bit of everything in. I find it really therapeutic actually. Being shut in the studio, in your own little world, choosing, playing and singing along to your favourite songs.

There are a few things in the pipeline and some that haven’t been organised at all. There are also a few things I’ve had to change due to time and money but I’ve tried to replace them with something equally as exciting – One of these is ice skating.

Planet Ice – my local ice rink, kindly offered me a 6 week, level 1 course for free. I’ve had 4 lessons and boy is it hard! Before I started, I’d have easily said that I can skate. But, technically I can’t. Technically speaking, skating is probably one of the trickiest things I’ve ever tried to do! The technical side of skating is an eye opener and not something you master very quickly. You have to learn to use the blades, to keep your feet neutral or to tilt left or right, to keep your weight in the right position. My stronger leg is my right leg which isn’t helpful when trying to use your left leg in front – it just doesn’t want to play ball! I work up a sweat and last week had to give myself a stern talking to as I was getting frustrated with myself – to the point I felt like quitting. But, I’m not a quitter so I took a breath and carried on. And even though I couldn’t convince them that the pub was a much better option, I’ve also made some new friends.

Next week sees the kids joining me as we climb up and over the O2. I’m not going to lie, I’m absolutely bricking it but this is what 40 things is about, pushing myself and doing madcap things I’d probably never have done before I got my cancer diagnosis.

It certainly does open your eyes. It puts things into perspective and, if nothing else, it gives you a thirst for life.

Xx