Friday 25 June 2010

What comes after May?

June of course! Then July, August, September and so on...That’s how I deal with things now. I look forward but I live each day as it comes. I’ve heard recently that quite a few cancer sufferers don’t regret the experience because it makes them ‘wake up’ to what’s around them. I can’t say I agree. I was never one for taking life for granted anyway. To me it’s a bloody inconvenience because it restricts the things I want to do. One thing I have realised though is that you’ve got to get out there and do it! Don’t wait for someday when this...or someday when that...just get out there and do it!! I’m not saying go into debt but why wait for that rainy day?

It was during all the palliative care appointments that I decided to stop planning my death. Conversations about where I wanted to die at home or hospital, what was going to happen to Joe and what type of music to play at my own funeral was consuming every minute of the day. I still tried to be light hearted but even when I tried not to think about it, death was always there. I didn’t want to plan for the end because it was like admitting defeat so I decided to live with the cancer. I pace myself and listen to my body but I’m squeezing as much as I can into every week.

This month with great thanks to The Willow Foundation, Joe and I had a track day experience. I’m a bit of a Penelope Pitstop at heart and have always wanted to drive really fast and not worry about speed cameras or other idiots on the road. 100mph in a Porsche overtaking a Ferrari on a disused runway, well that was just what the doctor ordered! There’s nothing like the rush of adrenaline as you fly past a brake sign at 100mph. As for Joe, he loved it. This is a kid that screamed “this isn’t a bloody kid’s ride!” on the Hex at Alton Towers. He was buzzing and absolutely loved it.

Then there was Ladies Day at Ascot. Mind you that come at a cost because with my prognosis in January I sent all my dresses and hats to the charity shop because I wasn’t going to need them where I was going. So I had to buy a new dress, hat and shoes! That’ll teach me for jumping the gun! Can’t say I objected that much though, I’m a woman after all. I did keep my favourite red evening gown though because I couldn’t decide whether I wanted to go to heaven in my best dress or have my mum tuck me in for the last time in my p.j’s. The latter was the winner. I picked the horses that names all had meanings to do with my life. Like Rite of Passage, Invincible Soul and Principle Role and I won on every race bar one. It was another sign of good things to come.

Now this week as an early birthday gift, my ‘bestest little buddy’ Karen took me on a hot air balloon ride. We flew at 4000ft over the beautiful British countryside on a gorgeous summer evening. Perfect! The balloon was a huge Union Jack which was so appropriate because the English football team made it through to the next level in the world cup. That was my ‘stop and smell the flowers’ moment. The views were breathtaking. It made me more determined to not go anywhere because there is still too much beautiful countryside and places to see.

So now what’s next? My 41st birthday. You’ve heard the phrase “I never thought I’d see the day”, well I never and yet here it is. My friends and family are taking me to TGI Fridays. Apparently when it’s your birthday they make you stand on a chair while the restaurant diners sing happy birthday. I am going to stand tall because I’m here!!

Sunday 13 June 2010

13th...unlucky for some, but not me because I’m 13 days into borrowed time.

January this year I was told the Chemo hadn’t worked, the cancer had spread aggressively during treatment and I had ‘months’ to live. For some reason the actual time span of ‘months’ hadn’t registered until I asked if I could take my son to Las Vegas for his birthday in May. Dr Emma’s eyes welled up and she told me May was too late! I was either going to be too unwell or dead by then! May!! That was only 4 months away! That couldn’t be right! They’d made a mistake! Maybe I moved during the P.E.T scan and the image was grainy. Hang on, I know, its buttons! I must have had buttons on my clothes when they scanned me. Four months!! What do you do when you’ve only got four months to live!

My bucket list consisted of places to see and food to eat. I wanted to drink wine in Italy and stuff my face with pasta, see blossom trees in Japan and eat sushi, ribs at a rodeo in Texas and hot chocolate by a fireplace in Aspen. But even that had been taken away from me because now I wasn’t allowed to fly! Apparently the combination of chemotherapy and melanoma put me at high risk of blood clots not to mention the difficulty I would have getting travel insurance. If they covered the cancer it would cost me a fortune and if they didn’t and something happened they would somehow link it to the cancer and it would cost me a fortune. So that put pay to the travel part of my bucket list. Did I mention I don’t like being told what I can and can’t do?

As it turned out I went into ‘tie up loose ends’ mode. I made a list on my iphone and starting checking them off one by one. In a weird way it was like getting ready for moving house or going on a holiday but instead of packing my suitcase and remembering my passport it was organising things so that Joe and Mum didn’t have to. Finishing things that I’d started. I had cross stitches that were unfinished, Joes baby album hadn’t been updated since he was seven (he’s now 15), my wardrobe needed sorting of all the clothes that ‘one day I’ll fit back into’ because one day wasn’t coming. I just wanted to clear out everything that I wasn’t using because this would save mum the painful job when I was gone. I started writing a journal for Joe with little snip-its to help him through life and listing the things that were in my keepsake box so that he would know what they were and the story behind them.

On top of those seemingly menial tasks were the serious depressing ones. A couple of days after I’d seen Dr Emma at The Churchill Hospital in Oxford, I went and saw one of the nurses at the Charles Clore Unit at Newbury Hospital. I was introduced to the Charles Clore Unit when the cancer first came back in 2008. I felt like I needed moral support and in a way it was therapeutic to be surrounded by others that had cancer. Talking about it openly without getting puppy dog eyes was great but when they started dying one by one it made it all too realistic and I stopped going. I had a gut feeling I hadn’t seen the end of my battle with cancer but I felt it wasn’t going to kill me and I was going to beat it. I was trying so hard to stay positive and was so torn between what I felt and what I was being told. Maybe the guys that had died also felt strongly about beating it, but having them dying was shaking my belief and I wasn't feeling so positive anymore.

So here I was, back at the Charles Clore but this time I was one of the ones that were going to die. That was when the palliative care ball started to roll! My nurse helped me organise appointments with a palliative care doctor, district nurses, Macmillan nurses...the list went on. I didn’t realise there were so many people I needed to see. It was still all a bit surreal though because deep down I still couldn’t believe I was going to die.