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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Are you fixed then?

 

September 2015 was Blood Cancer Awareness month. I had no idea. A year ago today I didn’t know I had leukaemia. 24 hours later I had been diagnosed and my life changed forever.

Leukaemia is part of a group of 137 blood cancers which are the fifth most common cancers and the third biggest killer in the UK.

This year I’m acutely aware of Blood Cancer Awareness month. Every media mention, each poster hung, countless online discussions remind me that the campaign is a wee bit about me. It is about raising awareness in order to increase support for the research that Bloodwise does. About demystifying the process of stem cell transplants coordinated by Anthony Nolan.  Encouraging new and lapsed donors to regularly give blood.

I’m glad to be a Bloodwise Ambassador, particularly this month. Helping raise awareness by sharing my story is something real and positive that I can do. Countless others who’ve walked this road before me have contributed to my recovery. Now I’m paying it forward.

And the question in the title? I’m starting to glue myself back together, slowly, piece by piece. Who knows what the final outcome will be. What I do know is I won’t be exactly the same as I was before 15 September 2015. I think I’ll always be a wee bit wonky from now on. But that isn’t necessarily a bad thing – is it?

Digging Deep – you’ve given so generously

 

New York
Lady Liberty (& Gordon Hodge) #kickingcancersass

I received a message this afternoon from Keri @Bloodwise in Edinburgh to tell me that colleagues from work (Scottish Enterprise) have just donated a further £776 to the charity.

Once again I’m blown away by the generosity of my friends, family and colleagues. A quick tally brings us to over £6,000 raised now and shared between Bloodwise, Ward 8 at the Western General, Edinburgh and Macmillan.

IMG_0511
#GoHelen

I’ve tried to pass on my sincere thanks to everyone who has made huge efforts to fund-raise in my name but I know that there will have been lots of you that I’ve not been in touch with yet. Please know that your efforts mean the world to Steve and I and that every £ is going to make a huge difference.

As you can see the fundraising t-shirts co-ordinated by Auntie Barbara and her ‘team’ made it to many corners of the globe (NYC, Melbourne, Granada, Dubai, Belgium, Bali & Edinburgh to name but a few).

These images have made me smile over and over and I never fail to be impressed that so many folk have made so much effort in my name. And here’s what it has all been about. Getting me from this on 19th February 2016

To this on 26 June 2016!Sunnyislay

#KickingCancersAss 

 

 

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!

From zero to hero

So it has happened. They are in. I’m now wearing my new stem cells with pride. 

When we got married in 2007, our wonderful best man Ian Robb devised a very ahead of its time movie about Steve and I. The sound track was “Holding Out for a Hero” as that was exactly what Ian knew I was getting with Steve. And what a hero he has been in every way. Ian – I’m glad I passed your test and was permitted to claim your best pal.

Well, I’m now the luckiest girl in the world as I have not just one, but two heroes. My 18 year old donor will forever be my ‘other’ hero and I hope that one day I shall have the opportunity to say thank you in person.

To be honest, thank you hardly cuts it, but as an opening line I hope that it will work? I’m in awe that someone so young would make such a seriously selfless act. Makes me think about my 18 year old self and what I might have done differently.

I’ve now been an inmate at the wonderful Beatson West of Scotland Cancer Centre for 10 days and in SCT (stem cell transplant) ‘speak’ I’m at Day +3. The chemo pre-transplant itself was smooth enough and other than feeling like I could sleep for Scotland at times and then sleep some more, that bit went OK.  Days +1 and +2 however have been pretty rough.

I’ve now experienced the awful nausea and sickness which I’d miraculously avoided throughout my entire treatment. Things were going a wee bit haywire at the other end too. Drugs for both have been liberally applied but currently I’d say a runny tummy wins hands down over the sickness. (At least you can read a book whilst stuck on the loo!!!)

The general view is that the new cells should be grafting onto me somewhere between day +10 and 18.  Whilst this is going on my blood counts have plummeted and the famous neutropenia has moved in. I know that this is only a temporary measure as once these new guys start working I will see my platelets and blood counts rising again. I’ll be prone to infection – hence my isolation cell – and will no doubt be calling on the services of the Scottish Blood donor bank again – thanks in advance!

This has been a ‘wild road’ (a wee colloquialism my Argyll friends will understand) and I’m expecting a bit more excitement before it becomes a scenic Sunday drive. But those who know me can testify that I am a bit of a lady racer and will eat challenges for breakfast.

I’m ready for this.

 

 

T – 2 days till Stem Cell transplant

Check in on Friday 12th February was smooth and painless – except for the wee blip of having to have my trusty Hickman line removed by ‘team Edinburgh’ just before heading to the Beatson. New line is now in place and working well.

The staff are all very welcoming and day one was filled with the usual admin, bloods, sharing my ‘protocol’ for the next Year! It’s really a bit like a project plan – which I’m very familiar with – and lays out what chemo, other drugs and procedures I should expect and when. There are even slots for my childhood immunisations (MMR, polio etc)

This week in the run up to my re-birthday on the 19th is mainly conditioning chemo to obliterate my immune system. I’ve already done 4 days of one hour sessions and then an additional 2 lots of 4 hour sessions – no ill effects thus far.

Today I have a one hour session, followed by a big bundle of preventative drugs then a 12 hour chemo shift which means I will be tied to my room 😦 Same regime tomorrow then it’s the big day. 

My donor is having his stem cells collected today, and I’ve got a crazy vision of them being frozen in dry ice, and rushed into a blacked out James Bond-Esk helicopter and raced to Glasgow.

Been talking to a number of folk around the hospital and it’s amazing how many think a stem cell tranplant is a big, invasive operation. When they hear that actually it’s really just like a blood transfusion for the recipient and a blood donation for the donor they are really surprised.  

To me this presents a big opportunity to communicate and demystify the process – which will hopefully encourage more reqistratoins to donate stem cells. 

And in some wonderful news from across the pond my pal Audrey “rang the bell” a tradition in the Moffitt Centre stem cell transplant ward when a patient grafts and can be discharged as she left yesterday at day 21 after her transplant to get rid of her AML. Still a way to go but that’s a huge mountain climbed my friend.  #goAudrey #inspirational

Preparing for my stem-cell transplant

After the completion of my second round of chemo the doctors took a more in-depth look at my likelihood to stay in remission. There are loads of markers or flags in every patient’s leukaemia make up. These flags help doctors predict how likely each patient is to stay in remission after chemo is complete and whether further intervention is needed.

In my case instead of one flag, I’ve got double flags! Flag number one is an ok one and if it existed on its own the docs would be happy (given previous experience) to chuck me out now and say right, get on with life, the chances of you relapsing are pretty slim. However, my other flag is more of a red one. Its existence gives the docs more cause for concern.

People with this type of flag are more than likely to fall off the remission band-wagon and see their leukaemia return. So the advice from the docs – always reminding me “it’s your choice Aileen – you could take the risk that the red flag wouldn’t cause problems”, but in our view your best option of completely obliterating the leukaemia is a stem-cell transplant.

Coupled with my current age and otherwise good health, a transplant was highly recommended. I could have chosen to take a bet on the chemo keeping the leukaemia in remission, however the conclusion Steve and I came to was that there would always be a huge ‘what if’ hanging over our heads. (And if my betting average following our holiday in Las Vegas was anything to go by I’m not that lucky). We decided that rather than potentially have to undergo the whole chemo regime again and then have a transplant at some time in the future, it was better to bite the bullet now and get it done.

The docs were first of all keen to see if I could have a sibling transplant – however my sister wasn’t a match for me (only 25% of siblings do match). This then resulted in a search, through Anthony Nolan and other stem cell registers, to find me a good match.

What the docs are looking for is a tissue type match and to find one which is as close to 10/10 as possible. There are three registers in the UK plus a large number in Europe and North America which are also scanned for possible matches.

I am delighted to report that more than one matching donor (a MUD – matched unrelated donor) was found for me. Initially my stem-cells were going to come from a German donor, however on closer inspection an 18 year old UK donor has been found who is an even better match for me. I’m over the moon with the fact that the team have found me not only such a good match in terms of donor, but also the fact that I’ll to be 18 again!!!!!!!

So next steps. I’ve had a battery of tests on my lungs, heart and kidneys to make sure my major organs are up to the job of having the transplant as its a pretty big deal. The donor has now been officially asked to donate stem cells for me, and we have three dates in the diary where a bed is available in the stem cell transplant unit within The Beatson in Glasgow. The transplant itself is a simple procedure – really just like having a blood transfusion and takes between one and 2 hours. The stem cells are harvested from the donor in a process a bit like giving blood and then there is a 72 hour window to get the cells into me.

I’m spending my time over the next couple of weeks enjoying the freedom of only having to visit the hospital once a week for care of my Hickman line. I’m feeling well and getting stronger daily. I know that once I begin the conditioning treatment (my last chemo) in advance of the transplant, and then the period following the transplant itself I will potentially have some big hills to climb but I’m confident that this is worth it in order to be able to take back my life and turn the page to the next chapter.

If you could do one thing for me after reading this post it would be to register as a stem cell donor, and encourage others you know – particularly young folk – to do so too. You can register with Anthony Nolan with the NHS or with The British Bone Marrow Registry 

You’ve all played a huge part in my journey to date, and I’m sure many of you will have questions about the transplant, the gubbins of how it all works and what you might be able to do to help me and Steve over the next few months. The good guys at Anthony Nolan have thought of everything an recently published a Friends Guide which you can download and which will answer many of your questions. Have a read and I hope it will help you understand the journey we’re on. x