Stem Cell anniversary bike ride for Maggie’s

Hiya! Still here!!

Sorry about the radio silence – you deserve better…

Can’t believe it’s almost 4 months since I last updated the blog. “My bad” as the kids say.

But in my defence, it’s really due to positive things and ‘getting back to normal’ that I’ve put the blog on the back-burner a bit and focussed on my return to the real world of family, work and even getting fit (though more about that last point later).

But before I bore you with my life story of this Spring, the big news is that I’m on the scrounge again and fundraising for those brilliant people at Maggie’s Cancer Centre in Edinburgh.

Next month (Sunday June 4), to mark a full year since I underwent a life-prolonging Stem Cell Transplant, I’m cycling from Edinburgh to North Berwick and back – around 50 miles – to help raise funds for the much-needed building extension at Maggie’s facility next to the Western General.

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But unlike my 5km run last Spring, this time I’ve roped in a number of ‘willing’ ‘volunteers’ to join me on the journey AND help raise money through their own friends, family and colleagues.

It’s not too late if any of you want to join us!! You really are more than welcome – there will be riders of all ages and abilities so don’t be put off by the idea of a high-speed lycra-fest down through East Lothian. I’ll be leaving that to some of the others. And if you can only manage 25 miles, there’s and hourly train service back to the capital if you need it.

I’m also on the scrounge for donations to such a great cause. Every penny helps so if you can contribute, please be assured your funds will be put to very good use.

Details of the ride and the JustGiving fundraising page can be found here: https://www.justgiving.com/fundraising/NorthBerwick-StemCellAnniversaryRide

So, what else has been happening?

I’m now ‘proper’ full time at work and back to my old role of heading up the Scottish Government’s Resilience Response and Communications Unit – you might have heard of ‘SGoRR’ or ‘the bunker’ that we activate whenever there’s an emergency or a disruptive event like severe weather. So, nice and quiet!!

I also got back on my bike in March commuting to work, and started some light swimming (I’m not very good) and some spin classes at the gym (I’m a bit better at those), losing a stone (much needed) in a month and really building up some fitness.

But disaster struck in early April when I picked up a bug that’s given me lots of ‘man flu’-like symptoms since including the most painful earache I’ve ever experience, followed by a perforated eardrum, sore throats, then sinusitis (with swollen nose and eyes) and now, 5 weeks on, a constantly blocked nose and no taste buds!

Needless to say my fitness levels have dipped a bit! So the bike ride might be a bit more of a challenge than I was anticipating!!

But it’s still a challenge I’m up for – and if you want to join me or support the cause then please, please do.

A x

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Nearly Normal Again

It’s one of my favourite jokes. “How many people work in your office/organisation?”. “Around half of them…”.

I’ve been reminded of it over the past few weeks as I’ve undertaken my ‘phased return’ to work at the Scottish Government. “Are you back working?”. “Well I’m back in the office…”.

As milestones go, getting back to work was right up there. I may have a new perspective on life, some changed priorities, but there’s been something incredibly rewarding about getting suited and booted again and getting back into the old routine.

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A lot of things have changed. Yet a lot remains exactly as I left it.

I’ve had a few weeks of reduced hours (starting at 3 hours a day back in December) which I used to catch up with a year’s worth of workplace developments and to re-acquaint myself with some of the longer-term issues I was dealing with when I went off sick.

But, by and large, it’s been like riding a bike (not the falling off and breaking your arm bit though…).

I’ve been genuinely touched by the warm welcome back I’ve received from not just immediate colleagues, but from other staff who were aware of my ‘situation’ through reading this blog or other articles.

I shouldn’t really be surprised. Since diagnosis and through treatment and recovery I’ve been extremely lucky to have had first-class support from my employers, support which allowed me to focus all my efforts on the small task of getting better and kicking cancer’s butt.

There are too many names to mention here, but the backing, encouragement, sympathy and (just as importantly) banter I’ve received from right across the Scottish Government ‘family’ has been both humbling and inspiring. You know who you are. Thank you.

Truth is, in the early months, I couldn’t be sure I’d ever return to work. Sure, I put my best, most positive brave face on things and vowed to do all I could to overcome my illness. But getting back into the ‘old routine’ was never a given, never a certainty.

There are some people who appear genuinely surprised when I say I’m not only glad to be back, but I was desperate to return.

They probably wonder why someone who has had a cancer that is ultimately incurable and will almost certainly return one day  – maybe next year, maybe five years, hopefully much longer away – wants to spend time at work when they could be “doing something better with their lives”.

I hope the words above (and below) help them realise why! Doing a meaningful job is part of me. Getting back to normal is a massive part of my recovery, mentally and physically.

I’m lucky that I genuinely enjoy my job. I love the challenges and diversity it throws up on a daily basis. The mixture of deep thinking, wide collaboration and instant (adrenaline-inducing) action.

These are some of the things that helped motivate me during my more difficult periods.

I know I have to be careful to pace myself, and not to overdo things too quickly. And I genuinely appreciate it when colleagues act to ensure that I’m not trying to do too much, too quickly, in a way that might adversely affect my recovery.

But I’m glad to say that after two months of building up my daily hours, and having finally gone ‘full time’ last week, I genuinely feel significant weekly improvements in my stamina, my concentration levels and my overall ‘mojo’.

This was given extra validation today by my three-monthly visit to see my specialist cancer consultant.

The outcome couldn’t really have been more positive. Blood counts all normal. No issues with my lymph nodes. Chest absolutely clear (despite a viral cough!). Still totally in remission and in as good shape as can be expected.

The added bonus was hearing that the research into Mantle Cell Lymphoma is continuing to bring exciting new treatments onto the market. And that a local audit review on the highly intensive treatment I had shows that many patients have still seen no return of their cancer 7-8 years after treatment.

The fact that we spent more time talking about President Trump than my treatment and recovery says a lot!

All-in-all, not a bad start to 2017. I think I’m nearly normal again!

PS – I’ve been doing my bit to help the wonderful folk at Maggie’s in Edinburgh raise funds for their much-needed new building extension.  Being the media tart that I am I was more than happy to accept a request from the Edinburgh Evening News to do a interview as part of the ‘Buy a Brick for Maggie’s’ campaign. Here’s the article: http://www.edinburghnews.scotsman.com/news/health/edinburgh-dad-was-fittest-he-d-ever-been-before-cancer-discovery-1-4330095

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A x

 

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So that was 2016…

That’s it. Almost time to say farewell 2016, hello 2017.

Truth is, on Hogmanay 2015, I wasn’t really sure if I’d be around to write this blog a year later.

I’d like to think that the over-riding attitude that I’ve shown in the past 13 months has been positivity, under-pinned by a healthy dose of black humour, and a fair degree of stoicism.

But I wouldn’t be human if I didn’t have doubts.

And I wouldn’t be true to myself, and my family, if I didn’t at least consider the grim reality of fighting an incurable cancer.

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They weren’t the kind of fears and doubts that would keep me awake at night; or drive me to alcoholic oblivion; or send me into the dark pit of depression and despair.

But they were always there, lurking in the background, keeping me grounded.

After all, I was putting my life, my future, into the hands of a crazy cocktail of toxic chemicals and my own body’s capacity to process this poison in a way that would kill off the cancer cells and not the good ones.  The same defective body whose rogue cells had given me the disease in the first place…

There were stats-a-plenty if I wanted to consider them. Body rejects the chemo regime? Possible. Unable to harvest stem cells? It happens. Cancer spreads to vital organs? Not unheard of. Virus gets you when your immunity is zero? Bookies favourite!

But here I am, Hogmanay 2016 and with my cancer in remission. And I’m thankful that I have the opportunity to type this blog and hopefully many more to come.

But whilst I’m in reflective mode, I’ll also spend some time thinking about those who weren’t so fortunate in 2016.

Many of you reading this will have lost people very dear to you in this past year. Parents and grandparents; brothers and sisters; wives and husbands; close friends and work buddies.

This can be a very difficult time of year for many people, for many reasons.

I think we can sometimes put too much emphasis on celebration at New Year. Some folk, understandably, just want to say good riddance to 2016. Others will be facing 2017 with a fair degree of trepidation.

When you raise a glass at the Bells tonight, make sure they are in your thoughts as well.

A x

 

 

 

 

 

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He’s not out of his MND, he’s doing a wonderful thing. Can you help?

Hello again. I was going to use this overdue update to let you know about my return to work. Or should that be return to the office, the work’s not really started in earnest yet. But posts about ‘commute, log on, drink coffee, check emails, have chats, log off, commute’ are not really all that inspiring.

But sod that – here’s something that is genuinely inspiring and deserving of your attention.

Meet Rob.

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Rob’s some man – though maybe he’s now half the man he once was. He enjoys a challenge – he’s led PR for the Police, SFA, the Better Together Campaign and ScotRail in his time, so it’s fair to say he doesn’t shy away from the difficult things in life.

Now meet Gordon.

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I feel humbled just writing about Gordon. He gives inspirational a whole new meaning. Gordon is dying. Motor Neuron Disease (MND) is killing him, and there is no cure.

But Gordon doesn’t want pity. He has used the precious time since his devastating diagnosis – at the age of 29 – to campaign tirelessly to raise awareness of MND and to raise funds to find a cure and fight for better care for people with this horrible disease. He knows it will be too late for him, but he’s determined to help the next generation. Turning a negative into a positive.

Here’s a link to Gordon’s amazing story: http://gordonsfightback.com

Rob and Gordon are mates. They worked alongside each other at Better Together. Rob wants to help Gordon fulfil his ambition. So Rob’s going to run a marathon – on Christmas Day.

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Yup, that’s right. Whilst we’re sitting around stuffing our faces on turkey and chocolate and knocking back the egg nog, Rob will be pounding the streets for 26.2 miles to raise funds for MND Scotland ( http://www.mndscotland.org.uk/ ).

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Rob’s put an amazing amount of effort into his preparations for Sunday’s run. I’m not suggesting he was unfit at the start of this process, but the only marathon I’d have put money on him completing would have been a retro Snickers bar.

Here’s Rob’s words:

“This year, instead of spending Christmas Day with my family, eating too much and drinking more than I should, I shall be running 26.2miles. The Merry Marathon is my contribution to the incredible fundraising and lobbying effort that has been led by my friend Gordon Aikman.

“Gordon was just 29 when he was told that he was dying of MND. Since the very day he was told this terrible news, he has set about raising money, lobbying politicians and changing the lives of other people who have been affected by this most terrible of diseases.”

You can get more details about Rob’s brilliant efforts at his Merry Marathon Facebook page: https://www.facebook.com/TheMerryMarathon/

Follow it, and quick!

But most importantly, how can you give money to help Rob’s fundraising effort? Well you can look at the photo of Rob and Gordon (above) and text CUREMND to 70660 to donate a fiver, or you can go to Rob’s JustGiving page https://www.justgiving.com/fundraising/TheMerryMarathon to give, give, give!

Good luck Rob, we’re all behind you.

A x

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Anniversary positivity – and a time for reflection

Yesterday, as a nation, we came together to remember and reflect on the sacrifices that so many have made to secure our futures.

Today, myself and my family are reflecting on and remembering a more personal anniversary, exactly one year on from the day I discovered I had cancer.

Tomorrow, the world will take a moment to recall the awful carnage wreaked on poor innocents in the Bataclan Theatre and other parts of Paris, also one year ago.

I’ve done a lot of thinking about perspective over the past 12 months.

Nobody wants cancer. I wish, every day, that I could have remained cancer-free throughout my life.

And yet, there are times where I see my cancer as a gift rather than an awful affliction. It’s that perspective thing.

I honestly think I’m lucky, and I’m thankful for every morning that I wake up, see my family and make the most of the day ahead. I see the world in a different light.

Those who died in conflict to secure our futures. Those poor innocents slaughtered by terrorists. They didn’t really have a chance. Fate was not on their side. They weren’t lucky.

I may have been diagnosed with an incurable lymphoma, but I’m currently in remission and hopefully can keep it that way for a good few years. New treatments are being developed that may bring a cure or at least prolong survival further. And when my time does come, at least I’ll get the chance to prepare for it and say my goodbyes.

Unless I’m hit by the proverbial bus. Then all bets are off!

Black humour has been a massive part of my coping strategy. Aided and abetted by my incredibly stoic wife, whose darkness of humour plumbs even greater depths than mine! Forget Fifty Shades of Grey. We’re Fifty Shades of Black!

I find it really hard to believe that it’s exactly a year since we walked out of that consultant’s room in the Royal Infirmary of Edinburgh knowing that our lives were changing forever – but not knowing how long that forever would be.

Truth is, I’ve had to re-read my blogs to remind myself of the details of those early days, weeks and even months. Maybe that’s a positive sign of not looking back, but focussing on the way forward?

We’ve learned a lot about cancer over the past year. But we’ve also learned a lot about ourselves, our values and our priorities.

Foremost in our list of priorities have been the children.

We’ve tried to be honest with them throughout. Encouraging them to be open with us. Sharing their fears, their questions and their hopes.

There’s no ‘right’ way to deal with cancer. No ‘manual’ on how you should deal with it, as the patient or as the wider family.

Every case is different. Every individual is just that, an individual. Everybody’s needs, their coping capabilities, are unique.

I think we’ve struck the right balance with our kids. Cancer surrounds them, but they don’t let it phase them. They don’t shy away from it, but neither are they obsessed by it. They are sensitive when that’s what’s needed, but have also developed a wee bit of their parents’ black humour…

Often, when I get something muddled, Finlay (5) will pipe up “Chemo Brain!”. You have to laugh!

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We’ve been greatly helped in this journey by family and good friends. And also by the wonderful team at Maggie’s Cancer Centre in Edinburgh, who incidentally are celebrating their own anniversary.

It’s 20 years since Maggie Keswick Jenck’s vision for a specialist support facility, designed for cancer patients and their family and friends, became a reality in a disused stable in the grounds of Edinburgh’s Western General Hospital. Tragically, Maggie didn’t live to see the beautiful building open it’s doors.

There are now 20 Maggie’s Centres across the UK, Hong Kong and Japan. More are in the pipeline.

As anyone who watched the brilliant BBC Scotland documentary last week will know, all the centres are uniquely designed, in many cases by world-renowned architects. Yet they all seem to have that Maggie’s ‘feel’ – that oasis of calm and reassurance next-door to what are generally functional and clinical medical centres.

The Edinburgh facility, brilliant as it is, is now far to small for the continually growing demand. This year they expect to see 22,000 people through their doors. And these numbers will only continue to rise.

Efforts are well underway to raise funds for an exciting extension to the building, designed by the building’s original architect, Richard Murphy. If you are looking for a good charity to support in 2017 (or to donate to this year instead of Christmas cards?), may I suggest the Maggie’s ‘Buy A Brick’ campaign, supported by the Edinburgh Evening News?

So, one year on, where am I now?

Not a bad place I’d have to say.

As noted earlier, I’m in remission, as a follow-up CT scan last month re-confirmed. I’m down to seeing my consultant every 6-8 weeks. The last of my cancer-related drugs runs out next week.

I’m getting fitter (if fatter…). This dog hater has become a soppy dog lover. I really look forward to my daily (and lengthening) walks with our Springer-Poodle Bailey, who has just celebrated his six month birthday (if you can ‘celebrate’ by having your bits chopped off!). I particularly look forward to our café visits for hot rolls or scones on many of these walks!!

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I’m nearly back to work. I had hoped to return in September but my own continued levels of tiredness coupled with a highly-bureaucratic return-to-work process has slowed my progress. But I’m ready, willing and able now, and champing at the bit to get back into a new routine.

As a family we’ve (re)discovered the joys of a staycation, and the incredible beauty of Scotland’s west coast (back to that thing about seeing the world in a different light). A week in a mansion’s converted staff quarters as the only guests on a secluded coastal estate saw to that!

And now we look forward to Christmas and a chance for a quieter and hopefully more stress-free Festive Period than last year, where as my re-reading of this blog reminds me, it was touch-and-go whether I’d spend 25 December as a guest of the NHS or at home with my family.

So what’s my ‘take away’ from this anniversary blog?

No matter how bad things might get, if you can, try and think about perspective. Look forward, not back. Look up, not down. There are many beautiful, inspiring things out there that can lift your spirits and make you grateful to be alive. And there are people, good people, who will help you do this.

A x

 

 

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Running for Maggie’s

Not me this time. Think I’m even less up for 5km than I was when I did my fundraiser between chemo rounds 5 and 6!

Nope, this time it’s my Scottish Government colleague Gordon Paterson who’s putting on his running shoes for the small matter of the Loch Ness Marathon this weekend – his first 26-and-bit miler, in aid of the wonderful Maggie’s Centres.

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I was amazed – and humbled – to find that my tales of the support that Maggie’s have provided to me and my family were part of the inspiration behind Gordon’s charity choice. I’m delighted to help spread the word and encourage support for Gordon’s noble effort.

Like me, Gordon is a father of three young ‘uns, so how he’s found the energy to train for a marathon is beyond my ken! He said:

“For a few years I have held the ambition to complete a marathon but have never before got past the quick run round the block followed by a bacon sandwich. So this year I will be running the Loch Ness Marathon – one of my favourite places. To show my huge respect to all the friends, families and colleagues who have and are battling with cancer I would very much appreciate if you could show your support with a small donation to Maggie’s Cancer Centres, who provide a wide range of support and advice and a welcome place of calm at a point of greatest vulnerability.”

This is a fantastic gesture (and effort) from Gordon and if you can help in any way – even the equivalent funding of a cup of coffee – Gordon (and Maggie’s) would be delighted.

You can sponsor Gordon at: https://www.justgiving.com/fundraising/Gordon-Paterson874?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Gordon-Paterson874&utm_campaign=pfp-share

Good Luck Gordon!

A x

 

 

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Time to up the pace?

They say you shouldn’t run before you can walk.

But I think I’m all walked out.

My recovery is going well and I think it’s time to step things up a gear. But I’m finding it difficult trying to work out how to get the balance right, to achieve the ideal equilibrium.

As reported in previous blogs, my treatment programme is now behind me, and I’m into full-scale recovery mode, with a view to getting back to ‘normal’ in the new year.

But that won’t happen without a bit of effort from me, and a bit of support from those around me.

I’ve started the return-to-work process. I’m doing more walks with the puppy. I’m trying to keep my mind and body active each day, especially now that Mrs Slorance is out to work three days a week. And my sticker/reward chart is going reasonably well!

Surprisingly, given the symptoms that developed, I was probably at the fittest (and lightest) I’d been in adulthood when I was diagnosed with Mantle Cell Lymphoma last October. The irony is not lost on me…

I was clocking up the miles every week on the bikes. I was eating well. I was playing regular 5-a-side football. I was in pretty good shape, even if I say so myself.

I’d love to get back there. Back out on the bikes – on the road and into the hills. Back embarrassing myself on the football pitch. Back losing weight through obsessive use of the myfitnesspal app.

I know this won’t happen overnight. I’ve got to be prepared to let the recovery build gradually. To understand that my body still needs rest as much as it needs exercise. To avoid burn out and a return to square one (well hopefully not square one, but certainly a snake slide back down the board).

This is true not only for my physical and mental recovery, but also my return to work programme.

I’m desperately keen to get back into the office. At a desk surrounded by colleagues. Meetings. Emails. Phone calls. Chat and banter. Using my brain. Doing what (I think!) I’m good at.

But my workplace have a duty of care, and quite rightly they want to exercise that duty carefully. My enthusiasm to get back to the cut and thrust/daily grind has to be tempered with the need to ensure that my work programme is integral to my overall recovery plan.

But I’ve started the process. Met with my supportive line manager. Spoken to the equally supportive HR team. Next stop a meeting with Occupational Health to assess my ‘fitness’ and develop a phased return plan that suits both me and the organisation. All going to plan I’ll be commuting back into central Edinburgh from next month, and honestly I can’t wait!

Hopefully that commuting might be on the bike, as it was before I went off sick.

I’m building up my physical fitness with my daily (often twice daily) walks with the fast-growing Bailey. But I need to start doing more. I just need a wee bit of motivation to get the bikes out of the garage or the swim shorts out of the drawer.

I hope that I’ll get a fair amount of motivation tomorrow when I head through to Glasgow to ‘Back the Brits’ in the Davis Cup semi-final versus Argentina.

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It’ll be my first major tennis event and I couldn’t have picked a more inspiring start by seeing not only Andy Murray in action on home ‘soil’ but also Juan Martín del Potro, the Argentinian star who has really defied the odds by returning to the top echelons of world tennis after some incredible injury challenges.

My 6-year-old daughter started tennis lessons in the summer through a Davis Cup winning legacy programme organised brilliantly by the Lawn Tennis Association so maybe she and I will take to the courts next week as another element of my recovery programme!

You also can’t fail to be inspired by the wonderful Paralympians in Rio. What they’ve achieved in the face of true adversity is utterly humbling, and if I can’t look at their herculean efforts and think “you know what, just get out on your bike, it’s only a lack of puff you’ve got” then I really don’t deserve to get better.

So, onwards and upwards. And by next summer I might be a rippling Adonis* again.

[*may not have been a rippling Adonis previously…]

A x

PS – regular readers will know about the amazing fundraising that my brave wee pal Joe and his family are undertaking to raise funds to create a dedicated ‘pre-teen’ room in the children’s oncology ward at the Sick Kids Hospital in Edinburgh. They’ve now raised well in excess of £15,000 and at the weekend Joe’s brothers and a bunch of friends ‘Braved the Shave’ to raise even more money for this brilliant cause. Well done to them all – not just for the cash raised but for being so supportive to Joe through all his treatment over the past six months. If you want to contribute you can do so here: https://www.justgiving.com/crowdfunding/leigh-clapperton?utm_id=108&utm_term=QzRpAN8vE

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