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!

 

 

The demise of my PICC line.

When Claire inserted my PICC line she and Amy her helper were ultra careful to make sure to avoid any chance of infection. However, there are never any guarantees and just 3 days after having it put in my PICC was showing worrying signs of something not being right.  A wee red ring appeared around the entry site of the PICC. The nurses told me to keep a close eye on it over the next few hours.

I kept both eyes fixed on my left arm from then on. As I watched, an ‘alien landing site’ appeared – it looked so odd I was being visited by nurses and docs for about 2 weeks to ‘have a look’ at my arm – because they’d never seen anything quite like it! The wee red circle grew from the size of a 10p very quickly to the size of a bagel on the inside of my arm. It was purple and surrounded by evenly spaced dark purple dots. “Right” the nurses said…..”that’s coming out, NOW”. So my saviour from the needles was being torn away from me. My arm had turned rigid from the elbow upwards. The PICC site was seriously infected and throbbed.

It’s taken 4 weeks for this guddle to rectify itself and there is still a vague blueish tinge to the inside of my arm, but getting the line out and pumping me full of antibiotics did eventually sort out the infection. It sometimes happens apparently and PICCs are more likely than Hickmans to get infected like this. But I was just so sad because it meant that my next 6 days of chemo were going to have to be done via a canula in my hand / arm / wrist.

A canula is probably something that most folk will recognise – think about ER or Casualty and if someone is linked up to a drip for fluids or bloods they are likely to have a canula on the back of their hand. That’s fine if it’s a quick one-off but I needed access for fluids, bloods, antibiotics and chemo to be given to me – sometimes for up to 14 hours a day. And the guys also needed to take blood for testing daily to check progress. Each canula can be used for maximum 48 hours – but some of mine only lasted 2 or 3 before the vein gave up and it had to come out.

I think my most pissed of moment so far was on the second last day of chemo when I had one canula in each hand, both attached to a different bag, and keeping me prisoner attached to ‘Pole’. When one vein gave up and the nurse had to remove the needle she clearly saw how much all of this digging around for veins was getting to me. “No more for today” she promised. “You’ve really had enough of this, haven’t you?” I was very, very grateful to her for taking ownership of that rubbish situation.

One wee light at the end of this tunnel was the news that I’d snagged a surgery slot on Monday 26 September to have my Hickman line inserted. I was slightly trepidatious about having this ‘thing’ inserted into my neck and coming out of my chest, but it was solving the disappearing vein problem and that was huge.

The procedure was ‘different’ and my hand holder during it was mental. We roared with laughter about friends in common and her ex-husband!  We caused a riot in theatre and even got the surgeon involved in a debate about which Islay malt was the ‘best’.

Always good to bring a good dram into the conversation – it certainly took my mind of my surgery 🙂

(Oh and I prefer Ardbeg, and he likes Lagavulin).