Spit and Save

There are several UK based organisations who’d love you to get involved in saving a life today.

You can be a life saver for someone like me who has been impacted by one of the 137 blood cancers by joining a stem cell register and also by donating blood and platelets. And of course there is ALWAYS a need for money so fundraising is vital too.

It’s likely that most of you will be aware of the Scottish National Blood Transfusion Service – these guys want your blood! And platelets. And they manage a register of folks willing to be a stem cell donor. They are a busy bunch and details of how you can get involved are on their website.

You may also have heard about Anthony Nolan. This is probably the best known organisation which runs a stem cell register. Their current tag line is ‘Are you fit to spit?’ hence my blog title. They are a charity who register fit and healthy prospective donors between 18 – 30 (who will remain on their register till they are 60). They’ve made this smart wee video which explains stem cell transplants far better than I can.

DKMS are the third organisation who maintain a register and they will accept new registrations from people up to age 55.

The important thing to note is that all of these organisations work together pulling potential donor information (along with their worldwide counterparts) together when a call comes in from a transplant team looking for a match.

And finally the charity that puts a big protective, umbrella over all of us fighting blood cancer is Bloodwise. They support patients and families and fund ground breaking research including 220 current projects worth £90 million. It’s this research which will allow us to beat blood cancer in this lifetime.

So will you take a minute today to register as a stem cell donor with a simple spit test? Can you spare an hour to donate blood or a couple of hours on a regular basis to become a platelet donor?

I’d not be here writing this blog if others hadn’t given their time already. Go on. You’ve got everything to gain. xx

 

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Day + 68 – #gettingmylifeback

A quick update and an apology for the long silence.

I’ve been working my way though the routine of the past 50’ish days since my last post and realise that I’ve neglected to provide a proper update for readers.

Weeks 3 – 6 were pretty grotty to be honest. Nothing out of the ordinary according to the docs but pretty crap from my point of view. Sleeping masses. Pretty lethargic all the time and nausea like I’ve never experienced – and hope I never have to again.

The fatigue is simply something which I need to deal with and go with the flow. Friends will understand how hard this is for me! The nausea however was something that the docs could try and help with. They chucked new drugs at me and also stripped some non-essential pills out of my daily regime. This plan eventually worked and I began to feel more human.

I can’t really blame my system for feeling sick and upset with the number of drugs I was swallowing. Thanks  for a great tip from my pal Audrey in Florida, which was to spread the drugs across several hours rather than attempt all in one go! The advice really helped.

I’m now at +68 and feeling better every day. My neutrophils are 100% donor which is brilliant. Other blood results will follow next week I think but everything appears to be going in exactly the right direction. I’ve been transferred to being partly looked after by my old team in Edinburgh at the Western General so only have to travel to Glasgow once a week. I’m also driving again (locally)- woohhhhhhhh!!!!!!! Freedom!

And finally on Monday the good news that my blood counts are fine for me to be back at the gym. This means that even if its snowing here (as it was today) I can get some much needed exercise. I’m trying to either fit in a walk or a trip to the gym every day and this is definitely helping my energy levels.

My Facebook plas will already have seen this but for everyone else here is my first job as an Ambassador for Bloodwise. Keeping fingers crossed that the publicity will generate new sign ups for the various donor registers and glad to have contributed to the £300k raised for Bloodwise during the Virgin London Marathon.

ENGRAFTED AT +11 DAYS

Throughout the process of treatment and run up to my Stem Cell Transplant (STC) the docs have continually cautioned me about being over optimistic. I find this quite challenging to deal with as I’m a glass three quarters full kind of gal…..but hey, these guys know that there are as many pitfalls on this journey as clear, four lane motorways!

It was with this caution in mind that I tried to keep a lid on my impatience / excitement as we neared day +10 which is the first likely day after transplant that signs of engraftment could show. (This would be significantly increased numbers of blood cells, neutrophils and platelets). The medics made encouraging noises. Every thing going to plan. Seems that you are managing this all pretty well. Blah….Blah….blah……

Then on day +11 doctor Chris came bouncing in with his usual happy enthusiasm – I really liked him and felt that he was a great example of a genuine individual who is well on the road to becoming an excellent haematology consultant.  Your counts are looking fantastic today. They are showing all the signs of engraftment!!

Wow! To say I was over the moon is the understatement of the year. I was beside myself with excitement. Of course I needed to speak to Steve and my family and let them know…and would you believe it, everyone was busy. So texts were dispatched and from Aberdeen to Argyll there were whoops of excitement and joy when everyone did finally look at their phones.

I’ve read in others blogs about the grim moments suddenly being forgotten when good news such as this comes along. And I would wholeheartedly concur. The agony of the severe reaction I’d had to the growth hormones earlier in the week suddenly faded into the background. I thought well, at least the pain was perhaps worth it if it helped my engraftment.

And even more good news the following day when Dr Alison announced if there were no further complications then they’d be looking to discharge me over the weekend.  So I could be in, chemoed, transplanted, engrafted and home in 22 days. Total. Truly spectacular in my book. So I behaved. I ate – despite mucositis in my mouth and throat. I ate despite horrible acid and heartburn. And I took all my medications orally despite having to take soluble pain killers first so that I could swallow 15 tablets at a sitting.

I did all this because I knew if I couldn’t then I would be staying in hospital. For my own safety. But the positive mind is a truly powerful thing. I willed improvements in all of the potential setbacks and I really believe that will helped me power thru these obstacles. That and Ganesh my wee elephant god. The god of moving obstacles.

Thanks to everyone who visited me in the wonderful Beatson. Thanks also to my news group crew who again kept me going during my 22 days – particularly my time in solitary confinement. Home now and loving it!

 

MISSING

As I twiddle my thumbs waiting for my graft to happen and my counts to wake up – I’ve been thinking about the things I’ve missed most since my diagnosis in September.

Undoubtedly the most significant thing is freedom. Freedom to plan, go outside, travel and even freedom to eat soft poached eggs!

I’ve realised that most of us take our freedom for granted and its withdrawal came, for me at least, as an almighty earthquake. I was living life to the full. At 100 miles an hour – and loving it. Steve and I have travelled to some wonderful places and I relished any opportunity to plan adventures.

We have a very good social life and a week without a night out with friends for food and drink was rare. My work also provided me with lots of freedom. To meet new people, develop exciting projects – basically freedom to dive in and get involved.

The current loss of ‘travel privileges’ is absolutely murder! We were forced to cancel three exciting trips between September and January as a result of my diagnosis. Our month in South Africa for Christmas was to be the highlight of Steve’s ‘big birthday’ year. What a blow. All on hold.

What is sustaining me though are the experiences of others I’ve met who have  beaten AML. Only this week I’ve seen pictures of Scott whose now 2+ years clear on the slopes in Switzerland and heard about some of the holidays Liz has been on in her 10 years since SCT.

I must temper my patience and find a way to content myself with comprehensive planning – even at first if it’s simple a weekend away in Scotland. That will give more pleasure that anyone can imagine.

And I look to my friend Ann and her lovely husband Ian who has been a warrior, continuing to beat his cancer diagnosis. “Get planning” she told me. “It’s the fuel that inspires you to keep going through rough days”.

I couldn’t agree more. My notebook is filling up with ideas.

Look out world I’m coming to get 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

Passing time.

I made a promise with when I was admitted – minimal day-time TV. And I can honestly report that I’ve fulfilled this promise.

That’s not to say it’s been easy. But given that my chemo might already be giving me ‘chemo brain’ and making me less on the ball, I don’t need to add Jeremy Kyle into the mix and damage my remaining brain cells!

So how to fill the days which stretch endlessly from 9am into the afternoon, and a visitor or two, up to evenings with Steve-doll and trying to find new and interesting stuff to chat over.  During and after round one chemo my saviour has been the current trend of adult colouring books. These come in many guises – intricate Indian inspired patterns; some inspired by horticulture or pop-culture. Friends have been sourcing a wide selection of books. I’ve tested them with pens and pencils – pens are my preferred option. 

It’s easy for me to fill two or three hours simply concentrating on my colouring. The most challenging decision is which colour to use next. Very calming. Very theraputic. Very un-me. But very welcome over the past weeks when I needed calm, relaxation and peace and when initially I couldn’t concentrate on anything else.

‘Chemo-brain’ initially left me unable to read more than a chapter of a book in one sitting. This really bothered me as I’m a voracious reader. I panicked because I love to read and didn’t want to loose this enjoyable passtime. 

Thankfully towards the start of round two the chemo-brain faded and has not come back. Fingers crossed that’s my share of it. Although its actually quite a good ‘excuse’ for me to use when I inadvertently forget a fact, a birthday or a name – who is going to argue that its actually just my rubbish memory;)

Radio has been a saviour too. Radio 2 is my prefered station; podcasts from across the BBC including some fab Desert Island Disks – who knew Jo Malone turned to smell to compensate for her dyslexia. I’ve uncovered some fab new music on Spotify simply because I’ve had time to browse the site properly.

I’ve not got into Suduko; Crosswords or puzzles. You’ll not find my dining table covered in 2,000 piece jigsaws and I’ve not become a movie buff. I’ve watched a wee bit more on Netflix but not overdosed on it.

So,  that’s how I’ve been passing my days. Gone is the calendar chokka bloc with meetings, events and appointments. I no longer moan about folk ‘stealing’ the only remaining hour in my diary for another needless meeting which could actually have been a simple phone call. Now appointments are at Outpatients and meetings replaced with blood tests.

I’m getting used to this (a wee bit) but don’t plan on making this a permanent change!

You can’t eat a whole elephant.

Not in one sitting. But really it’s just a month’s worth of food, or long-term goal, and as with anything we set our minds to, breaking it down will make the job easier.

When Dr Johnson outlined my treatment plan which could easily be six months long (or more), include weeks in hospital and see me having several rounds of chemo I had to swallow really hard. This was a mammoth undertaking. But my ‘work’ head kicked in. I’m really grateful that I’ve got experience of breaking complex projects down into manageable chunks. I know it might not suit everyone but that’s how I’m approaching my cancer journey.

First – I’ve got the big, long-term goal of being cancer free. That’s stuck to the wall and I look at it and remind myself that all my wee achievements will lead to this eventually. Then I’ve broken the job down into wee tasks and goals I’ll achieve – making it through Chemo round one; getting enough neutrophils to be allowed home for the first time and so on.

And then there are the jobs that I’ve got to let other people do (not easy for me as many of you know I’m a control freak) – so there are the doctors and nurses jobs and what I need to do to support their efforts. The most important thing here is for me to work on my patience – Susan and Paul – I’m sorry but I think you’ll agree that this is still something I struggle with? Perhaps this will help me become less of a “just bloody do it” individual (aye right!!)

So it’s about me and my team and how we all work together to reach my big goal. And my team also includes all the non medical people – you – my family, friends and Steve-doll are even more important because you are supporting me to achieve my mental and emotional goals.

You know me and know that this isn’t a tears and snotters journey. You feed my hunger for laughter and bring black, inappropriate humour into our conversations every day. You bring me wine and gin & tonic chocolate rather than grapes and tissues. You guys rock!

The other reason that I’ve got elephants on my mind is thanks to my pal Moira the Yogi who sent me ‘Ganesh’ the Indian god with the elephant head. He is Lord of Good fortune and the Remover of Obstacles. He’s now a proud member of my team too.

If you want to help me eat my elephant grab a knife and fork and pull up a chair. Bon appetit!

elephant