Kate

Cancerversary: March 2009

Age at diagnosis: 35

Diagnosis: Adenocarcinoma in situ

Stage of cancer: II

How my story begins: Before my diagnosis, I was a very happily married mum of 2 gorgeous boys. I've always been a vigilant, on the ball, type of person who had regular cervical smear tests.

I'd had a previous test that led the pros to do a little cryotherapy (not too pleasant) and then a cone biopsy. I suppose I didn't really ask too many questions; my cells weren't precancerous and I'm a 'yes sir, no sir' kinda girl. I just went along with it and didn't really know what they were doing it for.

So when 2 weeks later, on February 24th at 5:30, I got a phone call from a doctor saying he was following up on my biopsy, I thought it was a mistake or a joke (I know - odd joke). He said he'd reviewed my case over the board table and needed me to go in the next day.

So at 4:25 on February 25th, 2009, a very sweet, kind, renowned gynecologic surgeon told me that they had 'happened' upon the edge of my tumour when doing the cone biopsy.
Basically it was a very aggressive form and I was lucky that:
A) they found it.
B) I hadn't waited another 6 months to go to them.

How I felt after diagnosis: I'm a 'stay strong and carry on type of person' (not necessarily the right approach). I say things out loud to desensitise myself and face them.

But. ...the adverts are right....

I felt like the man standing in the Arctic wilderness alone with the wind whistling around him.
I felt like I entered an all consuming bubble that no one understood. I'd left a normal reality waiting to enter another reality that might be similar or completely different to that before.

Those words change you.

Telling my family and friends: My husband was with me for diagnosis. He was shocked and doing that thing men do where they act like they don't really understand and then go into fix-it mode.

Telling my mum and dad was just horrendous. My mum was babysitting and she was the first person I saw and told. Cue brilliant mum response... "We'll do this...we'll do this" 100 times and squeezing me so tight. I know she got in the car and cried all the way home.

I found that every time I told someone, as I got to the 'C' word, I felt dizzy. It was like my brain was getting sucked spiraling into a weird other world.

My treatment: The next couple of weeks were a whirlwind of crying, MRI scans, crying, internal scans, tests galore and crying. Oh and choices...... difficult choices. Like......"Kate.....you have the choice...we can test 1 or 2 lymph nodes and hope we tested the right ones and hope and then potentially do post-op chemo/radiation. Or....we could take loads of nodes, test them all and then may get away with no post-treatment." And another choice..."how do you feel about scarring? Because we're not sure yet if we'll be able to do surgery vaginally. And how do you feel about self-catheterisation? Because we'll need to move your bladder top, check it and get it out of the way...

So....I opted for the more radical surgery of the more radical modified hysterectomy and lymphadenectomy. They took the top part of my vagina and everything above it, along with plenty enough nodes to really be sure. I figured I didn't want to live in fear...just whip it all out please. But I wanted to avoid radiation if I could, as I had read about potential bowel damage.

How I felt after treatment: I woke up to find they'd done all of the above and by the grace of God had managed to do it vaginally. I had 3 drains from varying ports and a catheter ...but that's OK. What I hadn't really thought about is that I would have my first hot menopausal flush 2 hours after surgery!
Bosh .... normal to menopause in 2 seconds flat.

I healed pretty well and pretty quick. My poor bladder took a big knock though and the damned thing wouldn't empty properly. So I mastered self-catheterisation in order to get home within the 2 week period!!! I now recognise that I had a big dose of what I now know is a kind of survivor guilt. I'd had a really aggressive cancer, massive internal surgery and scarring but then in contrast not much external scarring to relate to and come to terms with.

So I went home and naively thought that I could go on as normal.

What was most difficult for me: Dealing with the emotional fall out.
Recognising survivor guilt and trying to see myself as a sexual being again. I felt unfeminine and had no libido. I felt unattractive and disjointed as I looked normal but I just knew I wasn't on the inside.
I had a massive internal conflict where I knew I was a different person but didn't recognise me.
I struggled to pretend I could cope.

Also because all of my scars and wounds and damage was invisible, everyone moved on...got over it.. "Ah great...Kate's fine...you must love life now, Kate...why aren't you happy all the time, Kate? You cheated the big 'C' Kate. Why aren't you running marathons and grasping life, Kate?"

BECAUSE I HAVE NO FRIGGIN IDEA WHO I AM NOW!!!!

What I did to help myself: I leaned massively on my nurse and my family. It took a LONG time to recognise I needed to come to terms with the new me.

My life after cancer: I'm 8 years on. I'm now divorced. I'm afraid the battle to rediscover my menopausal thirty something self and mentally and emotionally recover was too much for my husband. I had 'changed' and he didn't like that.

I'm afraid this has left me with a rather sad cynical view of trust and what a relationship is.
What they didn't mention is the effect removing lymph nodes would have on my poor legs. I'm a gym body and am doing my best to stay lean and fit. But gosh... do I know I have legs!!! They ache a lot and I just love donning those sexy compression socks!!

I get vaginal pain often and my poor bladder has never been the same! But I was able to stop catheterising after a few months. I also get regular bowel pain - they think from scarring in my pelvis.

But all these things are a manageable reminder. I call them my echoes of what I went through.

Where I am today: I'm in a good place. I'm in a happy and healthy relationship. I'm rediscovering a new feminine sexual being in me and feel strong and empowered by my cancer experience. I'm proud of it actually. I wear my badge with honour.

What I want other women to know: Be patient with yourself. There's a lot of pressure on women to be everything. We can't be everything. Enjoy being who you are.

How I will try to help others: I talk about it. I share my experience, my strengths and weaknesses with people and try to empower other women.