Im going to start this with a BIG WOOHOO!
2 years today since my beautifully, wonderful, amazingly strong Mum had her double mastectomy and said goodbye to Cancer!
Its been one hell of a struggle through this time not only for my mum but my family as a whole but we have come out fighting and finally the small steps are working and we are walking forward.
Just over 2 years ago my Mum was diagnosed with Breast Cancer and I felt like my world was about to fall apart in-front of me and in many ways it did.
A little over 2 months after finding the lump, Mum had had her operation and the Cancer was gone, there was only one problem – It wasn’t, not mentally anyway. Even now there’s still emotional days such as today, it really does go deeper than just physical scars. Cancer will always be apart of us and to sum it up – It Sucks!
Around this stage I found myself in a very lonely place. I was changing into a different person and at times I was shocking myself with how unsympathetic I was feeling towards others.
I’ve always been someone that will keep my thoughts and feelings to myself. I wouldn’t want to worry or bother people and in all honesty, did anyone even care? Are they really listening, or are they just going through the motions? Ever have these thoughts? Good, not just me then.
What I have learned though was building up your emotions and keeping them to yourself is never a good idea. Having good family and friends you realise they are there for you to share these things with and for me, I needed to allow myself to become more vulnerable.
Even now I still find it hard to open up so I’ve learned to cope with this in other ways, such as Blogging, Diaries and Scrapbooking. For me, its more of a release than needing someone to listen and respond. I need to let my feelings out and not feel restricted. Talking to people who I’m not so close with also helped. One of the first people I reached out to was a guy I had met a few years back, his Mum had also had Cancer and I just wanted to be told that what I was feeling was normal. I told him that I had so much anger, I could literally feel it oozing from my fingertips but he reassured me that this was normal.
Seeing how this was effecting my Mum was such a hard thing to witness everyday and I soon realised I now had a new sense of bitterness to me, no perhaps bitter isn’t the right word but I was starting to feel like no-one understood the uphill battle we were still facing and therefore their problems were not important – I was becoming one of those people I was afraid everyone else was.
No matter who you are and what your problem is I’ve always been someone that is happy to listen and give advice. I guess how I changed was that I would no longer pander to people. If you need advice I’ll happily share, if you don’t want to take it that’s not a problem but ill no longer listen to the same stories, continuously repeating myself. This is your issue – Own it. When you think of it like that, is that such a bad thing? I’m beginning to think not.
A little while after Mum’s operation she was referred to the Genetics clinic for tests to see if she had any of the Cancer Genes as it was so high in our family. For anyone that isn’t aware there are various Cancer suppressing genes, for most people they do the right job but if your gene is mutated it’s not.
We both first went to our Doctors around July 2014 to see if we could be referred for testing. My referral was declined there and then, I would only be eligible for this if Mum had already had Cancer. Mum’s referral was sent off and a few weeks later she received a phone call to say that her referral had to be declined, she then explained that since seeing our Doctor she had actually been diagnosed. The decision was overturned and her referral was now accepted. Its crazy how it had to take her to become ill for us to find out if there was a deeper underlining issue!
She was first tested for the BRACA Gene, this is the most common so I’m sure you would’ve heard of it but luckily it came back negative. Next they tested for TP53 which again she didn’t have so they moved on to CHEK2 and this time it came back positive.
Ever heard of CHEK2? No? Me either.
The CHEK2 mutation means you have an increased chance to develop female breast cancer, prostate, lung, colon, kidney, and thyroid cancers, Links have also been drawn to certain brain tumour’s and osteosarcoma. If you have this gene there is a 50/50 chance you will pass this on to your son/daughter. It also raises your chances of a reoccurring cancer even through preventive surgery.
There was now a chance me and my sister also carried the gene so we were referred to the Genetics Clinic at Oxford hospital. FREAK OUT TIME!
The lady briefly explained to us what the gene was, how the mutation was formed and what this meant for us going forward. It was now our decision regarding if we wanted to be tested or not.
I knew straight away that yes, I wanted to know! Although it was very daunting I needed to know. On one hand, if I didn’t know I could carry on my life and if anything happened then so be it, Ill deal with it when I need to but on the other hand, if I was tested and I did have it then I could take control. These adult decisions are not fun!
Although it seemed like a clear cut decision for me at the time something like this cannot be taken lightly. The more you think about things and the more research you do you realise how complicated they really are. After a couple more trips to Oxford where we discussed our options I found that my decision was changing.
Due to my age and my body still developing I wouldn’t be entitled to early mammograms or other checks until I was 30, whether I had the Gene or not. This didn’t seem right to me and still doesn’t! Luckily despite my gut feeling mine and my sisters results came back negative. We didn’t carry the Gene which means this is something that we can never pass on to our children.
My sister still gets regular check ups at the Breast Clinic but for me its still a waiting game. I’ve had one appointment at the Breast Clinic which I pushed for to try and settle me.
The lovely nurse talked me through what I should be feeling for and other symptoms, aswell as showing me how to properly examine myself – after all these years I’d been doing it completely wrong! Don’t prod with your fingers girls, use the palm of your hand. If you’re ever unsure I’d always recommend you make an appointment with your doctor.
I’m so proud of how far my mum has come and will always be by her side when the down days loom. Remember, just because you cant see someone’s pain it doesn’t mean it isn’t there.
For any family/friends/even strangers that may be going through something similar, please do reach out because I will listen and I will always give the best advice I can to help a situation.
Love Stacey x
You can find out a little more on the CHEK2 Gene in the below links –