A lot to think about

This post has been taking me a long time to write, I wasn't sure what I wanted to write about, I wanted to give an update on new important events happening in my post cancer world (the fun never stops) and also how I'm coping with life after treatment.  This is the problem, moving on is such a confusing time, which is why it's taken me so long to write about it. I don't know where to start.  I'll start with the update and then I'll try to explain the confusion.

UPDATE

As I'm under 40 and my breast cancer was a type known as 'triple negative' I qualified for genetic testing.  I went to the Genetics department in November for a session with Penny, the lovely genetic counseller and I agreed for them to take some blood which was sent off for testing.  In January I got the results and found out that my breast cancer wasn't as a result of a faulty BRCA gene.  I am relieved that I now don't have to consider having my 'good' boob chopped off and eventually my ovaries removed.  I'm also pleased that the rest of my family don't have to get tested too.  So my 'early onset' breast cancer remains unexplained for now, shitty odds I guess??  The hospital have asked me to take part in a further genetic research project as my Grandmother on my Mum's side had colon cancer at a young age and they think that there could be some significance in this.

I've also been to see my surgeon recently to discuss options for permanent reconstruction. My expander implant is only a temporary solution, although I have become very attached to it.  I've almost made a decision , I think I'm going to opt for a procedure that uses muscle and tissue from my back to make me a super new boob.  However, it will mean another long operation, another stay in hospital, another month of not driving. More scars, more drains and maybe a catheter if I'm lucky!  Having been back at work for almost a year now I'll certainly be glad of the enforced bed-rest, I still have series 5 of Breaking Bad to get through.  I know it will be some short term pain for long term gain, but I'm still nervous about it.  It will be at the same hospital and on the same ward where I was for my mastectomy.  I'll be certain to do a nice gory blog post, with lots of pictures of horrible drains and stuff...

CONFUSION (warning...I talk about people dying from cancer, me included)

A lot has been going on in my little brain recently (the bit of my brain that's not thinking about nail varnish and Royal Blood that is....). My online cancer group has lost some members in the past couple of weeks to this horrible disease. One in particular has been difficult to deal with, as it was a lovely girl called Claire who I met at a YBCN lunch in Leicester back in September.  She was only diagnosed in April last year and already she's gone, at the age of 30 without even having a chance at getting her life back after treatment or a reprieve from the horribleness of chemo. News like this gets me locked in a spiral of guilt, I feel extremely sad that someone has been lost to cancer, I feel scared because I know this could very well be me at some point, I worry about dying, I feel guilty for being selfish and thinking about my own prognosis when I'm fit and well....this goes on repeat...and repeat.

Everyone in my position who is successfully treated for a primary cancer is painfully aware that cancer is a horrible disease that likes to make a comeback.  I know my percentage chances of surviving 5 & 10 years from diagnosis, they're not the best due to my original tumour being large, aggressive and 'triple negative' (no hormone treatment the doctors can give me). The odds could be a hell of a lot worse though, and for that I'm grateful.  It's such a confusing thing to think about how long I might have left, I can't make up my mind.  Should I act like I only have a couple of years to live? Sell my house, go off travelling, cram in as much as possible? Or should I pretend like cancer never happened? Pay into my pension, plan sensibly for the future?  I'm trying to muddle through at the moment, hoping that I make the right choices.

I was 35 at the time of diagnosis, I had not long split up with my long term boyfriend, I don't have any children.  My life was not going in any particular direction, I was hoping that I would meet a lovely man, get married, have some lovely children, then cancer popped up just to make these things even harder.  I spent months shuffling around in my 'chemo coat' and a woolly hat trying not to look like a cancer patient, and definitely not in a position to do anything proactive about meeting my future husband.  Who would want me anyway? (is what I thought) with my odd boobs, short hair and hours of hilarious cancer anecdotes??  I have since found out that there are some super, super men out there that really don't give a shit about any of the above and actually think I'm quite amazing to have coped with it all.
 
Anyway, this doesn't make the 'life choices' bit of my brain any easier to navigate, it's all tinged with cancer worry now.  I'm not 100% sure I'm still fertile, my periods returned in October which was an encouraging sign , they're not that regular yet but I'm still keeping my fingers crossed.  I now have all the same concerns and worries of a normal 37 year old single woman, just with the added bonus of cancer worries on top.  So when everyone else around you thinks you're treatment is over and you're 'fixed', it's quite the opposite in fact.  You're still coping with the psychological fallout, because whether you like it or not cancer has changed the way you think, there's literally no escaping it.  I've been refused life insurance, I have to buy special travel insurance, I worry about getting my 5 a day, I drink green tea, I wonder about parabens everytime I buy shampoo, am I consuming too much caffeine, alcohol, sugar, soya, processed foods? Should I be getting more exercise, will I get lymphodema?  How long have I had this cough? Why is my hip hurting? Why do I have a headache?  AAAAAaaaaaggggghhhhhhhhh!!!!

Happy Birthday to me! 

Moving on

I cycled into town today to do some shopping, it's bloody freezing and my hands turned to ice because I forgot to wear gloves, but life is too short to be spent sitting in a queue for the car park and I had a very important mission; buying a dress for my work Christmas party! This time last year I had just started chemo and I had to cancel my ticket to the party, this made me sad. So this year I'll be there, dancing around like an idiot with some reindeer antlers on my head, mine sweeping bottles of beer from the tables... The significance of these moments is huge for me, however inconsequential the occasion, if it makes me feel alive, then it brings a great big smile to my face.  Each small life affirming moment like this is a poke in the eye to cancer, seeing as it's the party season, I've borrowed some lyrics from Elton! Kind of says it all...

Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid.......

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

I've been so busy recently I've not had as much time as I'd like to keep writing the blogs, I love being busy, I love making plans.  I'm single, I don't have kids, I love spending time with my friends and family, travelling up and down the country, seeing people, staying over, staying out late, having a few drinks, eating nice food, going to concerts, exhibitions. This was what I missed most during treatment, your life goes on hold, you press pause for six months and resign yourself to missing out on things, I HATED missing out.  One of the first things I had to do after being diagnosed was cancel the flights I had booked to go to South Africa with my sister.  We had planned to go the following February but I would still be in the middle of chemo so a trip abroad was out of the question. (Although I did buy a fancy iPad with the money I got back...every cloud and all that).  What I felt before I started treatment was a kind of grief, a sadness for the life I thought I was leaving behind, this was one of the times when I felt my most sad and hopeless.  At this stage, there were still so many unknowns about treatment, you aren't sure exactly when you're going to come out the other side.

I've already written about how my surgery was a breeze, but the chemo exhausts you, physically and mentally, your brain is dulled, you lose motivation to even get dressed in the morning, everything in your life is dimmed or muffled.  It's hard to get joy from the things you used to love, I'd meet with friends and not have a lot to talk about except for treatment, side effects and even more treatment.  I didn't enjoy reading, or watching films, I felt like an outsider looking in at people getting on with their 'normal' lives.  You lose a lot of confidence, you look different, you feel different, you're worried that you might die.  Sometimes you spend hours just staring into space without the energy to do anything.  For me it was the side of treatment I least expected, that you lose a sense of who you used to be.  Being a cancer patient is your new identity, it's what takes over your diary and your brain.

So imagine the relief when it's finally all over, it starts small, because you still don't feel quite like your old self, but it happens slowly and gets better and better as the weeks go by.  After months of hardcore treatment and regular hospital visits you are more or less left to your own devices to pick up the pieces again, I wasn't sure how I was going to cope, so I just started making plans.  I was determined to get back to work as soon as I could, I work with some lovely people and I genuinely enjoy what I do.  I wanted to be normal, to drive in rush hour traffic, to be part of the real world again.  I had to have a chat with the occupational health nurse before I went back to work, she wasn't used to dealing with young people with cancer, I told her I had my surgery a month before and she was shocked, when I told her it was in April, she assumed I meant the previous year! I started off working just mornings for a couple of weeks and then started back full time.  I was two months post chemo and one month post op, this was quick but it felt right and in hindsight it was the best thing I ever did.  I wanted to put the past six months behind me as quickly as I could, and sometimes it all felt like it had happened to someone else.

I still had radiotherapy to tick off the list and this was more of an inconvenience than anything else. It required going to the hospital every weekday for four weeks to get zapped by a machine for five minutes, totally dull. They were nice enough to work some appointments around my social engagements....like my friend's hen weekend in Brighton, being in the middle of radiotherapy didn't stop me from dressing up as a mermaid and dancing in a nightclub until the small hours. Radiotherapy generally has pretty minor side effects, it can make you tired, but I never really noticed, compared to what I had experienced on chemo, this was so easy. So, on 19th August 2014 after 4 weeks of 'zapping' I was officially signed off from Oncology and they booked me in for an annual check up in 2015.

When you finish treatment and you're still in one piece it feels amazing, like you've dodged a bullet.  The feeling of relief is similar to when you have a bad dream that you wake up to realise isn't true.  You have 'that Friday feeling' every day of the week.  The old sayings are totally true, I have becoming a walking, talking cliche... I wake up every morning glad to be alive, feel the sun on my face and the wind in my (very short) hair.

If I could go back in time and visit the me from last year, who was just starting chemo and terrified, I would tell her that she's going to be OK actually and she's going to be a lot lot stronger than she ever thought she could be, and that it will finish sooner than she thinks and she's going to look back on it all and feel very proud of how she coped.

This is me moving on, watching Kasabian in Leicester in June with my lovely friend Hannah and in Birmingham a couple of weeks ago with Rich; my brother in law.  What a difference six months and some hair dye makes!!

One year on

Today is my 'Cancerversary' it's exactly one year to the day since I was diagnosed with breast cancer.  I have felt emotional about this recently, going over the memories of that day when I got the news.  I knew I would feel this way, I could feel it bubbling under the surface for a while now, since the summer finished and November approached.

I decided the only way to combat the feelings is to turn this day on it's head and celebrate, this time last year I didn't know the extent of my cancer, I didn't know if it was curable or incurable, I didn't know if I would still be alive right now.  Even in the last year whilst having treatment I actually thought twice about buying a 2014 diary, I wasn't sure whether to waste £70 getting my passport renewed. But here I am, still standing after 6 months of treatment, sometimes it feels so surreal, like it all happened to somebody else.

A few months ago I met Sarah, a brilliant woman who writes the best blogs about what it's like to experience a cancer diagnosis as a young person.  I'll quote directly as she describes it so perfectly:

It's "Not a journey. Not a rollercoaster. It's a whirlwind. 

It's unstable, turbulent, dangerous, damaging. You'd like to think that there is some sort of predictability to what will go on, some sort of pattern, but actually the whole experience is very unpredictable. And the whirlwind itself is accompanied by various other storms too. Your world, that you spent your life building and creating, is suddenly ripped apart. It happens out of the blue, and fast. Before you've even had chance to comprehend that a whirlwind just struck, you're seeing a ground zero in the place that used to be your world....

So now you have a choice. Sit around, helplessly looking at the mess, mourning everything you lost. Or, occasional meltdown and tantrum aside, take it as an opportunity to build a fucking ace new world. (I am going with the latter. Obvs.)

Rebuilding is a big job, hard work, takes time, and of course there are points when you're tired, in pain and overwhelmed. (That's when you need those friends with the first aid kits, blankets and cups of tea.) But it's also a really exciting challenge. You get to create a new world. One you can design from scratch, that is perfect for you, that you love to be in. It will be stronger than the last one - you've learned from experience that whirlwinds can strike so you can be much better prepared for any future storms. It will be fit for purpose - you have a much clearer sense of what you want from life and what is and isn't needed for that. Most importantly it will be a beautiful and welcoming world with plenty of room in it for all the other people that you know will make it even brighter, warmer, happier. 

As for yourself... A few scars. A few lessons learned. A bit stronger. A clearer perspective. A bit more faith in yourself. A lot of love for a lot of people. A precious life... and this time with an understanding of just how precious it is"

You can read the whole of Sarah's Blog post here, she writes some brilliant stuff.

So today I'm celebrating life, and love, and family, and being alive. Tonight I'll be with my sisters, parents, nieces and brother in law; drinking champagne and setting off fireworks. Living in the moment, appreciating every hug, every smile, every tear.  Having been faced with my own mortality I am now incredibly grateful, grateful that my treatment has been successful, grateful for everyone in my life who has helped me through it, grateful to simply wake up every morning.  I don't know how many more times I'm going to get the opportunity to celebrate 11th November, so I'm going to make this one count!