Moving on.

Its 13 months now since my diagnosis with Acute Meyloid Leukaemia. A big part of ‘moving on’ for me has included looking back and acknowledging how far I’ve come.

I have quite sketchy memories of how ill I was when I was admitted to hospital. Being unable to ‘walk the length of myself’ and requiring up to three IV antibiotics at once because of sepsis hammer home the speed and severity of AML striking.

The faint blueish tinge which circled my inner arm following a horribly infected PICC line has at last gone. The 3 scars on my chest and neck which show where my Hickman lines were are fading. I remember how annoyed I was that I even needed one. So 40 odd units of blood and hundreds of vials of blood to be tested later, these lines were simply a life saver.

I remembered the other day how I’d spent late September and early October 2015 waiting for my neutrophils to rise after my first, 10 day long chemo. No matter how often I asked, no matter how much I hoped for the numbers to move up, the docs experience was bang on. He said it would most likely take a month from starting chemo to my being well enough to go home. 31 days later, I escaped! Granted it was short lived and less than 72 hours later I was readmitted due to infection – but I got a wee taste of outside.

When I heard in late November that I was to have a Stem Cell transplant (SCT) I knew virtually nothing about that process. 3 short months later my understanding was deep and often comprised of ‘too much information’. I’d had the ‘this could kill you or cure you’ conversation with the transplant team, they’d narrowed the worldwide search down to an 18 year old UK male who matched me 10/10 and I’d been fed through the SCT sausage machine. Coming out the other end I was more battered and bruised than I let on. But I was still here. I’d jumped the first hurdle.

Stuff anyone who pooh poohs the target of +100 days. It’s bloody important to have positive goals to focus on when you feel like you’ve been to hell and back. I still felt pretty rotten on day 100. But I knew that I was 100 times better than when I’d just been discharged. Any I’m a million times better today.

So many things have changed – in me, in my life, in the world around me. However what’s strangely comforting is how much has remained the same. There is actually something nice about being able to still do things I did pre-diagnosis. Probably  because despite my wholly positive outlook during my treatment there was always a degree of panic about what could go wrong. 

And now that I am feeling a million times better I wanted to tip my hat to those who’ve helped me and kicked my ass along the way. My husband Steve, has had to witness stuff he really shouldn’t have. He’s put up with me having the SCT version of constant ‘morning sickness’ for four months. He held our world together and kept it real for me. He was quite simply my saviour.

My family and friends have rallied round and done crazy big things to fund raise, tiny every day things to keep my spirits up and generally gathered round me to make sure I kept marching ahead every day.

I’ve written before about the amazing care I received from NHS (The Western General & The Beatson). But there is also the care that Maggie’s provided for ‘my head’. They’ve more than fulfilled their founders mission that people with cancer never “lose the joy of living in the fear of dying”. I’m loving living, every single day!

Bloodwise have stood head and shoulders above other cancer charities for me. From the disease specific information they supplied to the chance to interact with others who’d already walked the road I was travelling. They are a young, dynamic and hugely caring team who genuinely believe that together we can beat blood cancer. Their belief in me, and the support they’ve given me to ‘pay it forward’ and help others who are just starting this blood cancer journey as been truly humbling. I hope that I can be a good ambassador for them.

So, its with a positive outlook that I turn and continue my journey on the road to normal (and all the new, different and exciting places I’ve not yet visited). A fellow SCT recipient said to me today, “I feel its time to draw a line under this, and move on”. I agree. We’ve made it to the end of this crappy chapter. Lets turn the page and dive into the rest of the book!

 

 

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The importance of ‘getting your game face on’

I returned to Glasgow today to see my consultants and met a lovely couple, Cameron and Michele. Cameron is about +30 days from his transplant.

They’ve been reading my blog and both of them commented on how well I looked, as did Dr Chris who we also caught up with. I’ve not seen Chris since leaving The Beatson so he’d remember me at my most grotty!

Their comments made me think about the importance of making a wee bit of effort each day if you are able to. I know before anyone mutters that sometimes getting out of bed after a transplant is as much effort as they could manage that it’s not always easy. However, I genuinely believe that the psychological benefits of making an effort with yourself do pay dividends. Just look at the testimonials received by the Look Good Feel Better course attendees for confirmation of this.

Whilst undergoing my initial three rounds of chemo I managed to wear some make-up most days. My hair may have disappeared but I was lucky still to have eyebrows and lashes so my little bit of war paint brightened up my face and my day. Dr J was always keen to see which wacky colour of nail varnish I’d have on for his visits and the nurses were guaranteed as supply of remover if they’d mistakenly come to work with painted nails!

The first week or so after my transplant was a make-up free zone simply because I was feeling so rubbish but regaining the impetus to wear some mascara after about 10 days absolutely lifted my spirits and gave me a wee bit of myself back.

I think that the act of taking care of yourself and turning your strongest, most positive face to look your cancer directly in the eye is one of the patients strongest weapons. The docs have their arsenal of drugs and treatments but if this fight really is a team effort, then we patients have a responsibility to engage fully, not just to simply remain a passive bystander. We can do this by focusing on making small gains every day – even if that is only a slash of red lipstick or some perfume.

My ‘game face’ comprises as much positivity as I can deliver; some well applied make-up; my ‘best’ hair and even some wacky purple or blue nails!

Whatever gets you in the right frame of mind to keep taking bold steps forward on your road to recovery must be a good thing. (Not sure if I’d recommend purple nails for the guys reading this! Although Eddie Izzard carries of a red nail extremely well!)

Wishing Cameron all the best as he crunches through the next few weeks. As I said today, in February Day 100 felt like a lifetime away, but look, I’ve made it and so will you!