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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Chemo – the other bits.

What’s the image that springs to mind when you think of someone on chemotherapy? A bald, sick, gaunt person? Someone unable to summon up enough energy to get out of bed and do much meaningful stuff? Mine too.

So you can imagine that I went into the first cycle of chemo feeling more than just a wee bit nervous about what was in store for me. I’ll be very honest now and say that I think I’ve been remarkably lucky. I had the infection in my PICC line. For the first 3 days I experienced very spiky temperatures which made me a little bit mad for a few hours (or more mad). My weight went absolutely through the roof – gaining 10kg in about 4 days due to water retention. But really, that was it.

The docs prescribed anti-sickness drugs before chemo kicked off, so I didn’t have any issues with this or even nausea. Now those of you who know me and my appetite will understand how important this was to me. And, given the surprisingly good quality of food at the hospital I was filled with glee that my appetite was maintained.

Hair! Or loss of it. This was pretty likely to happen with the type of chemo I was having. So preempting baldness I asked Lisa my hairdresser to come in and cut my hair short (see picture above) so that when it did start to fall out it would be far less traumatic. In the grand scheme of things (I think at least) that loosing my hair for a while is relatively minor. And on the plus side I’m saving about £20 a week on products and half an hour a day on washing and drying. It was all shaved off about 10 days after chemo finished and I can report I’ve actually got quite an attractive shaped head!

HEnergy was another area that I was worried about however as my visitors will attest I was still able to stay awake through most visits. (and if I did nod off it was because your chat was mince!) I did get what friends in the know have described as ‘chemo brain’. My generally decent levels of concentration fell right down – one chapter in a book, or 30 mins of a film were about as much as I could deal with in one sitting. This from the girl who could previously easily devour a whole book in one sitting!

However, I’m pleased to report that 3 weeks on from the end of my chemo, concentration levels are back and books are once again being devoured with gusto. I think that the process of remembering and writing all this down for my blog has re-sparked my brain too. Which makes me even more inclined to agree with the premise that attitude and approach contribute just as much as medication to positive outcomes.

I’ve believed from day one that I’ve got a role to play in my recovery which is about grabbing my cancer round the throat and looking it square in the eye. I’m not the disease and it’s not me. I am more powerful than it and I will move it right out of my way. It’s simply a ‘bump in my road, an obstacle which I will overcome. And dealing with any of the potential side effects of treatment fall into the same category.

Ask me this again if I’m feeling really rough at some point and I sincerely hope that I will still have the same will to fight. I think that I will.