Transformation

Priorities, Planning and Pacing - One More Lamp Post

Reviewing the weeks since my last blog entry, the post-transplant terrain became trickier. Photopheresis for GVHD (Graft Versus Host Disease) and all the meds were continuing; however, I developed a DVT in my left calf, exacerbating the leg swelling already present due to steroids. A low blood count required several units of blood and, one morning, I lay down so weak at home that I wondered if I would rise again, or if that moment was the end of my life.

Then, on Wed 3 April, I felt awful. After experiencing rigors overnight, blood tests showed a general ‘CRP’ infection marker at 211 and I was admitted to the Cancer Centre, Belfast City Hospital, with chest and possibly other infection.  There is a well-defined haematology protocol here, so it was straight onto multiple IV antibiotics for a week and a new anti-fungal drug. The medical, nursing, physio and pharmacy team in Ward 2B looked after me so well and it has been great to be home for Easter.

Early during my in-patient stay, a CT scan was scheduled. I was concerned if lymphoma had relapsed in my gut, given some perceived symptoms, and admit to some tweaking of my pre-funeral service playlist and a measure of sorrowful angst through the night before the scan. So, great relief when the next day, mercifully quickly after the scan, my Consultant reported ‘no sign of disease or bowel perforation’.

After discharge home, I was so tired, as was Ruth, that I decided to research the difference between ‘tiredness’ and ‘fatigue’. I found a few resources that are helpful and share them here (clickable links highlighted) for information:

In “A New Way of Thinking About Fatigue”, Prof Karin Olson describes on p95 how our language around tiredness and fatigue can unhelpfully blur what may well be different experiences requiring different approaches.

I have now survived Hodgkin’s Lymphoma and Non-Hodgkin’s Lymphoma five times since 1984, including an autologous and then the donor stem-cell transplant and aftermath. Prof Olson goes on to introduce one of the most helpful concepts that I have come across in that time – Exhaustion – a further zone on a spectrum of adapting to serious health challenges. 

Tired-Fatigue-Exhausted

(Olson, 2007)

Understanding, and being able to articulate to others, an exhausted state has enabled us this Easter to be mindful about the ‘3 Ps’ – Prioritising, Planning and Pacing – explained by Macmillan’s excellent Fatigue Management resources.

Prof Olson’s subsequent presentation on ‘Fatigue Screening and Assessment’ may be of interest.  Since being discharged from hospital, this text from slide 14 of her presentation has been on my mind:

“increasing physical activity is associated with a reduction in fatigue in cancer patients and survivors. Overall, we found that exercise moderately reduced CRF among all type of cancer patients diagnosed with fatigue regardless of stage of treatment; significant benefit shown”

Despite this ongoing setback in strength – stairs are a bit of struggle again – this reminder of the importance of choosing to exert physical activity when sensible gave me a gritty resolve to walk yesterday, Easter Sunday, and today.

Somehow, I remember quotes from films.  One favourite quotation is from the 1997 movie Contact. Scientist Dr. Eleanor "Ellie" Arroway, acted by Jodie Foster, is on an extended risky journey, encounters a supportive alien race, helpfully presenting as her late father who she lost in childhood.

Discussing next steps of exploration, her father says

“Small moves Ellie, small moves”

and that is my resolve for my regular walks in this glorious spring weather, always mindful of applying Factor 50 sunscreen given my skin’s sensitivity due to the GVHD. Today I walked one lamp post further than yesterday and, energy permitting, tomorrow, I will walk that bit further again.

One further useful link for people facing any sort of rehabilitation from health issues is this “Return to Wellness” blog. This post on developing a Rehabilitation Plan is a good starting point.


Managing after donor transplant - looking forwards

19-Mar-19

Exactly 3 years to the day after running the first of all the NI parkruns for LLNI, and nearly 2 years after NHL relapse and my donor stem cell transplant in Dec 2017, the post-transplant measures keeping me alive are legion:

  • Anti-rejection drug, anti-virals, anti-fungals, antibiotics and assorted other tablets
  • varying dosage of steroids but down from 100mg
  • diabetes mgt due to steroids
  • loads of creams for skin gvhd which is also affecting my eyes at present
  • Hickman line reinserted since venous access is shot
  • fortnightly photopheresis in BCH

Steroidal effect on thinking, feeling, sleep and especially muscle depletion is not easy.

Q. For the frequent "How's Tim?" question, we've this week worked out a standard response:

A. "Tim will be managing post-transplant implications for the rest of his life, and we're getting on with it. He still needs to be proactive in avoiding infection."

Thank you to people who've supported us at different times in so many ways.

2 years ago, preparing for the 2017 Lisburn half marathon, I was enjoying the challenge & achievement of running 8+ miles.

I believe I will do a parkrun again in the future, DV.

#timepasses
#lifeisbeautiful

What have I learnt? Lots, including:
"Remember the love bit"
~ Christopher Hitchens
https://youtu.be/Ok7MqazQkCo

Links:
Original writeup of my first run
Parallel Facebook post
 

BT Belfast Technology Hub - 27 October 2017

(I visited BT colleagues on Friday before chemo in Belfast this coming week, recovery during November and then a donor stem cell transplant in St James’ Hospital, Dublin.

BT Hub

Colleagues asked for access to my notes, and specifically various resources mentioned. My crib notes, fleshed out for this post, follow.)

Health Update
Since I got sick in April and the haematology doctors’ confirmation in May that we were dealing with Non-Hodgkin Lymphoma for the fifth time in 33 years – unlucky! – you, my work colleagues, have been very supportive.

Through a summer of chemo I’ve had excellent medical support with five stays totalling thirty-five days in Belfast City Hospital. These stays would have been longer without care of the excellent Holywood District Nursing team and the medical technology that enables me to get home with a syringe driver.

One day in July, my Google feed queried:

"Belfast City hospital - is this your new workplace?”

Er, NO, definitely not!!

After two cycles of the potent ‘R-ICE’ regime, a PET scan showed “dramatic improvement”.  Two more cycles later and, after two further scans and some scary queries, a huge relief - “You are in total remission.”

So, all sorted then?

Nope.  My faithful immune system is just not doing a good enough job cleaning up rogue cancer cells, so I now need a new one.

The planned schedule from here is:

Next week – preventative chemo in Belfast City Hospital with Bendamustine, a drug new to me

Early December – head to St James’ Hospital, Dublin for donor stem cell transplant.  Using an IT analogy, where Windows 95 is an out-of-support operating system, and the different operating system Linux is available, the plan is

  • a week of conditioning chemo to deprecate my Windows 95 immune system
  • then a stem cell infusion from a very kind anonymous donor, replicating their shiny new Linux 4.13.9 system
  • some weeks insolation in hospital for the donated stem cells to migrate to my bone marrow and 'graft', establishing a new factory for my blood cells.  Critical-level 24/7 onsite support is needed through this phase that my Consultant terms ‘Tiger Country’
  • then, discharged to Ruth’s care for some weeks in nearby Dublin apartment
  • finally, home for a long recovery, with drugs to manage and counterbalance a residual & diminishing Windows 95 with the new Linux system.

Getting through it
I thought I’d mention a few things that have helped get through the past six months.

The toughest thing has been uncertainty at many levels.  Some days, it’s just about clinging on to existence, with Ruth at my side.

Practising basic mindfulness has helped.  After days inside, simply stepping out of hospital, or outside our front door, and just consciously breathing fresh air through my nostrils is real, enjoyable and a relief, reminding me that I’m alive.

In the garden at home, I sometimes sit for five minutes and focus on the leaf of a tree, or individual flower in one of the many pots planted by Ruth.

Slow down.

Breathe.

A sense of grounding, clarity and calm can result.  Notice, connect with – and appreciate – beauty.  I found this free FutureLearn online course on minfulness related to performance in the workplace insightful and applicable.

Also, stories, in various media, have been evocative and helpful.

The action movie Hacksaw Ridge, a true story, features a soldier who must go up a cliff a second time.  Facing treatment again, this second donor transplant will be tougher than the transplant with my own stem cells in 2013.  Army Medic Desmond Doss’ conviction, courage and grit facing awfulness, for a second time, inspires me. 

For a more reflective slant, Tolkien’s short story Leaf by Niggle, (full audio here), depicts an individual working through life’s responsibilities and annoyances.  Leaf by Niggle is an evocative story that, ultimately, suggests Hope into our future.

Support for LLNI – BT Couch to 5K
My Dublin Consultant is Prof. Elizabeth Vandenberghe, who introduced my specific type of transplant to Ireland 15 years ago.

Prof Vandenberghe emphasizes that the transplant and knock-on effects will be tough – “tougher than you think”.  Bloodwise explain the process here.

I have been told that I “will never run again”.

I am therefore so encouraged that BT people across the UK have signed up for this Autumn’s running / fund-raising project in support of Leukaemia & Lymphoma NI’s research into blood cancers.  Thanks to Matt Strudwick for creating the BT MyDonate page.

If you remember nothing else from this time together, remember this -

Thank You!

The benefits of regular exercise are many - the NHS quantifies 10 benefits here.  Through my running in recent years, I have found release from stress, enjoyment of fresh air, a more positive mood with endorphins flowing, and times of both restorative solitude and welcome company.  I recommend regular exercise to everyone.

While heeding medical counsel, I’m still hopeful that, in 12-18 months, I will do a 5K parkrun again, at whatever speed!  Last week, keeping this aim in view, I walked the three circuits of Belfast Victoria Park’s 5K parkrun – my longest distance in six months.

I intend to be back at parkrun next year.

What’s Next?
BT has been very supportive and encouraging about welcoming me back to work next year.  Thank you, especially Phil Lockett, for your support through this unprecedented level of uncertainty in my life.

In his paper “After the Treatment Finishes – Then What?” (a compelling 5* read for any patient, carer, medical or HR professional) Peter Harvey says

“Regaining and rebuilding your strength - both physical and emotional - is a task that cannot be emphasized enough. That is your foundation.”

I have decided, after 30 years with BT, to retire and focus on getting through the transplant and then working on rebuilding the strength needed for the next phase of life.

Thoughts on Leaving BT
Career is a really significant part of our lives as we work through the challenge & achievement of software engineering, IT operational management and leadership to deliver innovative and reliable services for our customers.

Reflecting on thirty years, I see that the major milestones of our lives can be embedded in our work and working relationships. Three examples are

  1. 23 Sep 1984 – As an Ulster Polytechnic placement student with BT in Royston House, Belfast, Damian O'Connor said to me "Tim - you're not well - go home". The next day I was admitted to hospital with Hodgkin’s Lymphoma. I was in Dave King’s Services team and still recall the sustained support through that difficult year from Dave and team members including Janine Stewart, Eileen Murphy and Arthur Newell.
  2. 20 Oct 1998 – As recently promoted team leader for CSS Bill Follow-up, following the formidably effective Duncan Chambers, I started some special leave as our Social Worker picked us up from Wellington Buildings to meet our new 4 year old sons for the first time.
  3. Tue 11 Sep 2001 – some of us stood on this floor in Riverside Tower at the kitchen area’s TV watching the Twin Towers burn.

This community of people within BT has lived through all sorts of experiences together. Over thirty years, some themes stand out so, as I say ‘Goodbye’, I offer three thoughts.

Respect Each Other
One of our former local Senior Managers, Malcolm Lees, noted around the time of his own retirement that BT had dropped the sentence within our values that “we respect one another”.  Malcolm thought this was a great element to have front-and-centre of our values.

So, it’s Competition Time, with a prize of the first of the German Biscuits brought along from Skinners Bakery.

Q. In BT’s current Way We Work document, how many times does the word ‘Respect’ occur?

A. The word ‘Respect’ occurs 34 times – respect for law, human rights, regulatory limits, brand, customers, stakeholders. And also respect for other people’s dignity, equality, respect for each person’s contribution and the individual diversity of everyone we work with.

“We respect one another” today remains a core BT value.  Indeed, BT, more than any other area of my life has given opportunity after opportunity to meet, and work with, and value many diverse individuals.  It has been great to work with people from places including Belfast, Glasgow, Ipswich, London, Cardiff, Pune, Bangalore and Chennai as well as many global hardware & software vendors.

In today’s world, ‘Respect for the other’ is more precious & necessary than ever.

Promote respect.  Nurture it.  Guard it.

Be Proactive (the first of Stephen Covey’s 7 Habits of Effective People)
Maintain Skills: We are in a technical industry and have access to a rich set of training resources.  I think we all simply have to make time to keep technically up-to-date.  Everyone, for example, should have BT's Bronze certification for the Security pathway training.

Reflect on ‘Calls’:  We spend more time than 10 years ago on conference calls and the technology has improved to make this a richer experience.  Some days, however, can be “back-to-back calls”.  It’s also important to carve out time for focused thinking around innovation, problem solving, continuous improvement. Time for self to plan / learn.  Time for 1:1 sessions.  Time for team sessions to look ahead together.

Write your Team Charter: We did this on the Integration Platform and both the output and process of getting there were worthwhile.

Manage your Boundaries

  • Social media - during chemo over the summer, I realised I couldn’t tolerate toxic inputs from USA, so I switched off Donald Trump on my Google feed.
  • Well-being - I have learnt from colleague Brian Ditty who, before he heads on one holiday, has the next one booked so he can look forward to it. Similarly, years ago, BT NI’s District Engineer George Adams said to me that a half-decent manager must be able to manage his/her own leave – a basic measure in caring for your well-being.

One classic resource – ‘Boundaries’ by Cloud & Townsend – a detailed read, coming from a faith perspective, and about to be republished to also cover social media.

Boundaries

Recommended.

Celebrate Each Day

Our world seems more volatile, uncertain, complex & ambiguous than I remember it 30/20/10 years ago

So, be kind to yourself ... “Treats are allowed.”

What lingers with me today most of all is the small kindnesses shown to me by colleagues along the way.

Charley Moore, Senior Manager who established this Engineering Centre, on some late Friday nights would give a lift to a then very junior colleague from Aldergrove airport to the City Centre.  Every time I drive down the M2 motorway at night time and turn the sweeping bend to overlook the lights of Belfast City, I think of Charley, his work for the Centre, and his kindness at the end of another long week.

And, now, I think of the massive support from BT people last year & this year for our running projects in support of LLNI and the 197 people we signed up as potential stem cell donors.

O-finish

Our time is up.

“Everyone you meet is fighting a battle you know nothing about”

… so anything you can do to support a work culture where people help each other on will help with overall effectiveness.

 

Thank you to people here today, everyone on this conference call, people currently out of the office, and colleagues from former years.

Thank you to Ruth, for presence and support “when it was easy and when it was difficult” as we committed to each other in our wedding vows.

I first worked for BT in 1984, before the World Wide Web was invented in 1989. We have been, and are, involved in world-changing achievement. I wish you well in your careers and in life.

Respect each other.

Be proactive.

Celebrate each day.


‘You can count the number of seeds in an apple, but you can’t count the number of apples in a seed.’

This blog reproduces an interview in the January 2017 edition of The Methodist Newsletter with Anne Hailes.

Anne blogs regularly on life, media & NI culture here.

When I read Anne's piece before it went to press, it was a delightful surprise to discover that Anne actually knows the man whose support triggered this #TimPageFitForLife project.


 

 

“In summer 2013, we were planning a five-year survival bar-be-cue.  

Unfortunately, one month short of this cancer-free milestone, I was more seriously ill than ever before – tumours through my body, jaundiced, unable to sleep & hallucinating.  

Non-Hodgkin Lymphoma was back with a vengeance.”

Tim acknowledges that we all face challenges yet he has had more than his share.  Despite this he is an example of a man who just keeps on being positive and depending on his faith and the doctors to get through.  He has been treated for aggressive blood cancer four times since September 1984, when, as a 20-year-old BT placement student, he had a routine chest X-ray.  

“Within hours, I was in the Royal Victoria Hospital, Belfast, diagnosed with Hodgkin’s Lymphoma.  Five months of chemotherapy and a month of radiotherapy followed.  The treatment was severe, my dad was dying at the same time and, some days, I felt the bottom had fallen out of my world.”

On one of those days he had to escape the demons in his head and he turned to John Frost, his old headmaster at Sullivan Upper School in Holywood. 

“I landed at Mr. Frost’s front door and he immediately recognised a level of distress beyond words, I just broke down, I couldn’t say anything.  He and Mrs. Frost sat me down with a cup of tea.  I thought ‘my cup runneth over’ – a cup of tea goes a long way to help!  The Frosts showed me kindness and understanding.”

Tim was getting back into the swing of life when he was dealt another blow. Two years later he was told the cancer had returned and what should have been a red-letter day turned into anything but.   

“I’d just completed computing science at the Ulster Polytechnic as it was then.   On the same day I was told the cancer is back, the job offer I’d been promised was withdrawn because of my health problems.   The world fell apart.  The most helpful person was an atheist friend who said

"You've got to look at it this way, Tim.  As one door closes another one shuts!"

I actually derived lots of laughter at that.”  

But it wasn’t over.  May 2008 brought the shock news that a large lump in his neck was due to aggressive Non-Hodgkin’s Lymphoma.  Blood cancer treatment had progressed dramatically which meant chemotherapy could be administered as an outpatient and it killed the cancer in 12 weeks.  

However, Tim, his wife Ruth and twin sons Downey and Chris, then 19 years of age, were to be tested again.  In summer 2013, the family were planning a five-year survival bar-be-cue, when one month short of this cancer-free milestone, Tim became more seriously ill than ever with tumours throughout his body, jaundiced, hallucinating and unable to sleep. Non-Hodgkin Lymphoma was back with a vengeance.   

Family
The Page family

“I was close to death and there were groans beyond words going Heavenwards about myself and my family; there’s a comforting aspect as God can draw near and hear but there’s also the Psalmist’s spirituality of lament and Jesus saying ‘Let this cup pass from me’.  I think a big thing for me is to know that you can shout at God and cry and sometimes just whinge because we are His little children.”

It was their 'Year of Hell', in hospital for five months, with a 50/50 chance of survival, he was planning his 50th birthday party and funeral service at the same time.  

Thankfully, it was the birthday party that people ended up attending!

“Since then my motto is,

If there’s something in life to celebrate, then celebrate

because there’s enough difficult stuff going on.  A couple of months ago, I appreciated walking down the road and looking at one falling leaf as it fell to the ground.  As well as the challenges of work, paying the mortgage, there are moments of beauty all around.”   

As he regained fitness this special man turned to running.  He uses it to release stress, get fresh air, keep endorphins flowing, for company or solitude. 

“Sometimes I’m thinking about everyday life and pressures, other times it’s a time of internal reflection, zoning out at a spiritual level.  There’s a phrase that I love in the hymn Dear Lord and Father of Mankind

'The Silence of Eternity'

Something of this can happen when I’m running or on a retreat, an experience that I don’t understand but one that I treasure. 

At work a couple of days ago, a Director asked me how I was, I think he was surprised with my answer.  I told him - I’m alive, I have a family and they are well, I’m mobile, I have a sane mind, I’m doing work that matters, I look back at the running project that succeeded so I’m grateful for every day.” Having been in hospital six months, seven pumps keeping him going, being in isolation and not being able to move out of bed it might be surprising that, in September three years later, walking into work to lead the stem cell Donor Drive with Ruth, he told God he had no complaints about his journey.  

“I am thankful to be alive today; you know, you can maybe understand life looking backwards but you have to live it looking forwards, in the moment we don’t see the big picture.  I did despair at times, not surprising when your blood count and your energy is low and the doctor says it’s 50/50 so you're writing your funeral service and you feel awful; then you realise despair is OK, it’s not the final word and it doesn’t apply to your whole life.  I thought about my sons and my wife, their concern and what would they do without me being there.  When you’re a young man in your early 20s it’s rough but probably you don’t have dependents, when you do have loved ones who are dependent then that’s a different level of concern.”

During these toughest of months, Tim says he gained an acute appreciation of the precariousness and preciousness of life.  He came to see profound significance in small acts of kindness, for example the offer of midnight tea, hot toast and a chat with one of the exceptional nursing assistants.  He also had a renewed appreciation of research and was determined to do something practical to help. He knows that prayer is important but the drugs and the treatments are just as essential, as he says God is present in all things including research.

Along with this renewed sense of positivity came a sense of responsibility to build his fitness. So, he now has a personal trainer and attends the gym every week and is training to be a coaching psychologist.

“Early last year I discovered parkrun where, every Saturday morning, in 24 public parks across NI, people come along to do a timed run.  I ran my first parkrun at Victoria Park last November, finishing in 162nd place out of 162!  I found myself overwhelmed by uncontainable emotion on achieving an objective that would have seemed unimaginable when I was ill.  82-year-old Gerry Ward was the sole remaining volunteer waiting for this straggler.  Looking back, I now see that his presence, encouragement and positive words were the key link in the chain that led to a seven month ‘#TimPageFitForLife’ running project.”

Gerry and Tim
Tim with Gerry Ward, Victoria parkrun Volunteer

Gerry Ward remembers that day too.  “We were just clearing up the finish area after the run and I became aware of this chap sitting and to all appearances crying. I toddled over to ask if he was ok thinking he might have fallen during the run but in the course of conversation I found out that the tears originated from his satisfaction of completing the run. He indicated that during his periods of therapy his main ambition, when fit enough, was to undertake the 5k run.  You talk about uncontainable – well, I certainly felt similar after my chat with him and to some extent felt a bit inferior.   I’m fortunate in so many ways to be an integral part of the core volunteer group of our Saturday run, made all the more special by people like Tim who inspires all around him.”

Within months the objectives of this project were in place.  To run all the Northern Ireland parkruns in aid of Lymphoma and Leukaemia NI at Queen’s University.  He has raised £15,253 for LLNI and signed up 197 prospective stem cell donors with charity DKMS.  He’s proud that lives will be saved in years ahead when someone receives a stem cell donation.  

 

image from https://s3.amazonaws.com/feather-client-files-aviary-prod-us-east-1/2016-12-23/9160afce-182b-4458-b77f-db27de357d19.png
BT colleagues at Tim's final run, 24-Sep-2016, 32 years to the day after he first went into hospital

Tim himself has increased his fitness getting through all the runs, bringing down his time from 40 minutes to under 35 minute and, he laughs, even when running in the rain the sense of achievement is great.

But it’s not only fundraising, spreading the word about blood cancer and treatment is vitally important to this brave man.  He has published six video interviews about blood cancer treatment, research and the important role of fitness in staying well: “And thank God I am fitter and stronger than I’ve ever been.” 

He’s surprised and thankful for the sheer goodwill of so many people in funding his project and giving their support.  Indeed, Tim is clear that ‘through the years, the support received along the journey from Ruth, family, friends, colleagues, professionals and so many others has helped get me through.’

“On the way back from Cookstown parkrun, I had a conversation with a friend David Quinney Mee.  His daughter, Lucia, had just been on Radio Ulster promoting organ donation. Lucia, age 17, has had three liver transplants, and great success at the UK Transplant Games.  David said to me:

‘You can count the number of seeds in an apple, but you can’t count the number of apples in a seed.’

In other words, in the great scheme of things, never discount the power of the small to inspire, to sustain and to give hope, whether it’s planting a tree, sharing five loaves and two fishes or encouraging someone struggling in their own race through your words, your support and your presence.”

More information at

www.timpagefitforlife.com
www.leukaemiaandlymphomani.org 


First published in Methodist Newsletter, January 2017 edition


#TimPageFitForLife Interview III, Michael McAuley - Benefits of Physical Fitness

"We should be preparing our bodies for what life throws at you."

  ~ Mike McAuley

This third #TimPageFitForLife interview is with Michael McAuley.

Michael graduated from the University of Ulster in Sports Coaching.  A creative and effective entrepreneur, he is Owner of EXSTO Fitness & Fitness Trainer at EXSTO Gym.

Michael, Fitness Trainer to Ruth and myself for 18 months, talks about the 'massive' health benefits of fitness including the physical, mental, emotional and occupational aspects of our lives.

Michael sees one of his aims as to "try and just get people moving", citing the American Heart Association as one of thousands of resources available on the web.

 

Thank you to Michael for getting me moving.  After 18 months, I'm the strongest and fittest that I've ever been ... I can recommend him as a Fitness Trainer who can help prepare his clients for what life may throw at them.  Thanks also to Andy Magowan, cameraman for this interview, who's up next in our fourth interview.

If you would like to donate to LLNI, the BTmydonate site is here

In case you missed them, previous interviews were with

  • Dr. Mary Drake, Consultant Haematologist - Overview of Blood Cancers
  • Laura Croan, Clinical Nurse Specialist - Physical Fitness for Patients

Next week, a further three interviews will be posted:

  • Andy Magowan - Exsto Gym - Benefits of sports massage
  • Prof Ken Mills - LLNI - the importance of research
  • Dr. Kyle Matchett - LLNI - repurposing of drugs

 


Restore Enniskillen parkrun to the National Trust property at Castle Coole

I'm running all of Northern Ireland's 22 parkruns for a local charity.  With 18 venues run - 4 to go - it is a terrific experience!

Each course has its own characteristics;  all have a powerful sense of achievement, community and encouraging support.

My 6th run was Enniskillen parkrun at Castle Coole, a strikingly beautiful place. 

Enniskillen-U

The blog for that day is here.

Recently Enniskillen parkrun and the National Trust decided to part ways, with Enniskillen parkrun seemingly required to relocate.  I think that development is regrettable - not just for local parkrun regulars, but also for the National Trust and the town of Enniskillen.

Heather Harper, National Trust member and parkrun regular, recently set up this change.org petition

I don't really 'do' petitions, but I am signing this one, for several reasons

  1. Welcoming
    As a National Trust member (we signed up on 14th May when we visited Castlecoole parkrun, impressed by the collaboration) I want the "Welcome to Castle Coole" sign to signify an open, progressive National Trust that strives to be inclusive and engaged with its community
    Enniskillen-A
  2. Generative
    parkrun embodies the sort of society I want to see for future generations - people taking responsibility for their well-being + opportunity for regular volunteering + positive cross-community encounter.

    The National Trust in GB promotes this positive ethos (on the NT website).  So, surely, can the local NI National Trust.

  3. Wellness-Enabling
    Research is emerging that regular exercise can help prevent some cancers, ease the path through treatment for people who get sick, and promote rehabilitation and return to work afterwards.

    As a four-time survivor of aggressive blood cancer, I am fitter and stronger than ever before.  The regional parkrun community, including the strikingly beautiful Castlecoole venue, have played a part in that.  I hope that future visitors to Enniskillen can have the same amazing running experience at Castlecoole that we enjoyed.
     

Hopefully, the National Trust and parkrun can revisit this decision - the life-affirming benefits to local people of this healthy and community-focused weekly initiative should not be discarded but, rather, treasured.

If interested, have a read of the press article above and, if supportive of retaining Castle Coole as a parkrun venue - the petition is here.


Queens - 7 May - 5 of 22

After postponing Larne, to complete a course of antibiotics, it was 'back on the horse' this week with parkrun #5 at Queens.

Una Short was Run Director - I appreciated her warm welcome before the race, and thanks to whoever made the excellent lemon drizzle cake after the race.  Yum.

Uber-encourager Trish McAuley, one of this project's sponsors, brought along friends again and I appreciated their presence and interest.  Regular runner David Mark joined us along with BT colleagues past and present.

Fellow Corrymeela member Sarah Williamson offered to run with me as pacesetter.  So, amongst 167 runners (a record number for Queens - parkrun is thriving) we set off.  This was a particularly enjoyable run - the spacious greenery of QUB's Malone Playing fields really invigorating.  My aim was to come in under 40 minutes - so very pleased with 38:10.

I'm now at the point where I can actually talk a bit while running!  So, we shared thoughts on running technique, experience of community and the role of encouragement throughout life.  Sarah is involved in lots of things.  As a regular runner, she completed the New York Marathon in November 2015 for CCC - Confident Children out of Conflict in South Sudan.  If you ever run the NY Marathon, starting on a double bridge - do try do start on the top bridge... there are stories of runners on the lower bridge deck being surprised by wee from above!

One theme now important for me is 'Transformation' - here are some thoughts in an article last year.  In our world, we see significant transformative change at many levels.  In BT, before getting ill, I led a complex technology transformation programme.  Subsequently, the stem cell transplant on Christmas Eve 2013 was a visceral and risky transformative 'reboot' from Tim version 1.0 to version 2.0.  

Returning home after yesterday's run, I remembered that Sarah sometimes contributes to Radio Ulster's Thought for the Day. Checking if any 'Thoughts' were still online, I found this three minute broadcast from Christmas Eve 2015 .  My stem cell transplant was Christmas Eve 2013, so that will be a significant milestone date in the calendar for the rest of my life.

Much rings true here, Psalm 30:

"You have turned my sorrow to dancing again"

For me, each Saturday parkun, and the weeks's conditioning training, represents that positive moving forwards.  The encouragement from Saturday runners and supporters is deeply significant and, potentially, transformative for people.

Sarah's 'Thought' recounts an experience of having a gift, of being asked to share it, and of struggling with the costliness of that.

"Gifts are only gifts if they are shared, if they are given away, handed to others.  Try giving a part of yourself that you might not have given before - warmth, a hidden talent, or even an encouraging word."

We all have the capacity to encourage others in their running / walking / struggling / journeying through life.  If you find a way of giving a part of yourself in the week ahead, it might make a very big difference to someone else.

 

The photo album for my Queens parkrun is here.  

Next week is our 22nd Anniversary, so we're making a weekend of it, and look forward to seeing some friends at Enniskillen.

Best wishes,

Tim.

Project Objectives

Raised for Leukaemia & Lymphoma: £8141

People registered with Delete Blood Cancer: 62

People who have signed up with parkrun: 5

Tim's Running Progress

#

Date

Course

Time

Position

Age Grade

1

19 Mar

Belfast Victoria

36:22

177/209

41.2%

2

26 Mar

Belfast Waterworks 

37:05

222/237

 

3

16 Apr

Bangor Ward Park

42:10

386/390

35.53%

4

23 Apr

Portrush

40:22

140/155

37.12%

5

7 May

Queens

38:10

162/167

39.26%

 


Two Towers

New perspectives for Easter 2015.

1 September 2014

It’s the first day of my return-to-work plan agreed with Occupational Health following a year’s sick leave due to relapsed Non-Hodgkin Lymphoma. I’m in British Telecom’s Riverside Tower, close to Belfast’s River Lagan and the Waterfront Hall. A regular Monday morning conference call is about to begin, reviewing changes that have been made over the weekend and considering the week ahead.

Chris Jenkins has dialled in early from Swindon, welcomes me back and asks, ‘I suppose a lot has changed?’  Actually, no it hasn’t, and I’m surprised. It’s the same building, the same people at the same desks, wearing the same headsets.  The whiteboard even has the same writing as a year ago.  I blurt out something vague about a changed perspective on life.  But I’m not very articulate.

Colleagues enter the room with smiles and operational urgency.  We don’t finish our conversation; Chris tails off, ‘So nothing has changed. And everything has changed…’ 

2 March 2015

I’m back to work full time.

During the five months I spent in hospital the previous year – months when my odds of survival were 50/50 – I used to look down from Belfast City Hospital’s Level 10, thinking of all the work happening on the 12 floors of the Lego-brick-sized Riverside Tower I could see in the distance.

Skyline from BCH Tower 5-Jan-2014

Now, restored to health, I survey the Belfast skyline from Riverside Tower, seeing in the distance a Lego brick-sized City Hospital Tower Block.  And I can better articulate the shift in perspective. I have an acute appreciation of the preciousness and precariousness of life, recalling a concerned nursing assistant, when I was at my lowest, explaining that she needed to position my bed closer to the resuscitation facilities.  I see profound significance in small acts of kindness, having experienced the certainty of regular midnight tea, hot toast and a brief chat with one of the exceptional nursing assistants working during my salvage chemotherapy.  And I know the motivating power of encouraging words, remembering the effect of the cleaner on the morning shift who suggested some colourful language I might want to direct at the cancer cells.

Skyline from Riverside Tower 2-Mar-2015True, both the Riverside and City Hospital Towers are still standing in their customary positions. Nothing has changed. But everything has changed.  I’m still working out how ways in which valuing life, practical gestures and encouraging words can impact the ‘new normal’.

At times in hospital, I was confined to bed and chair, either due to weakness, pumps and tubes, or to the requirement for isolation following stem cell transplant.  One revelation since then has been the rediscovery of space – the ability to just move about – whether it’s a lunchtime stroll around the Lagan or simply walking down the street with home in view.  As Psalm 18:19 says, ‘He brought me out into a spacious place’.  And, more than before, finding space to nurture connection with God seems vital.

However, there’s a knottier shift in perspective too.  I’m more aware of others’ suffering – disease, poverty, abuse and conflicts between people in Syria, Iraq, Libya, Yemen, Central African Republic, South Sudan, Afghanistan, Ukraine and Gaza – unimaginable levels of suffering.

During a recent retreat at Tobar Mhuire, the Passionist Community in Crossgar, I had a helpful conversation with Fr John Friel.  In passing, he mentioned theologian Johann Baptist Metz.  Metz’ emphasis that ‘Human persons are not just hearers of the Word, but also doers of the Word’ was influenced by a formative experience during the Second World War.  After training at Würzburg Nazi base, the 16-year-old Metz arrived at the front where his company numbered one hundred young men.  One evening the commander sent him with a message to battalion HQ.  When he returned in the morning they were all dead, overrun by combined bomber and tank assault.  Metz says, ‘I remember nothing but a wordless cry.  What would happen if one took this sort of remembrance not to the psychologist but into the Church?… if one did not allow oneself to be talked out of such unreconciled memories even by theology, but rather wanted to have faith with them and, with them, speak to God?’

My perspective until now has been to stand up for God, showing kindness and encouragement where possible in the light of Jesus’ saying, ‘Whatever you did for one of the least of these brothers and sisters of mine, you did for me’.  But a further perspective shift happened recently at our Carnalea Methodist home group, suggesting a further possible response.  The reading was from Exodus 32: 1-14 where, following plagues, escape from slavery, the Red Sea miracle and provision of manna, Moses finds the people revelling around their golden calf. God is clear.  He will destroy the people and start again with Moses.

In response, the reluctant leader Moses directs the Creator of the universe to, ‘Turn from your fierce anger, relent and do not bring disaster on your people’.  Moses doesn’t pull any punches.  He challenges God.  And in the light of his example and Metz’ biblical thinking, it struck me that there is also space in our relationship with God for standing up to God in protest about injustice as we live in this precarious, broken and beautiful world.  Indeed, the Bible implies that this is something God wants us to do.

29 March 2015

Palm Sunday – the start of Holy Week with its two towers of crucifixion and resurrection.  Nothing has changed – my perspectives are messy, fragmented, incomplete – but everything has changed.  Maranatha.  Come, Lord Jesus!

 

Published in the Methodist Newsletter, April 2015 edition


Reason for Hope

“There either is a god or there is not; there is a ‘design’ or not.”
~ Christopher Hitchens

16-December-2013.  Tomorrow, I enter Belfast City Hospital for stem cell transplant, following three months of chemotherapy for relapse of aggressive lymphoma.  Today, without seeking medical permission (!), I’m taking ‘A Dublin Day’, in a more physically precarious state than I’ll admit to anyone, to buy Christmas presents in Dublin’s Kilkenny Shop.

On the train, I read the late Christopher Hitchens’ book ‘Mortality’.  Eloquently, he shows that people of faith have no monopoly on appreciating beauty or railing against injustice.

A life that partakes even a little of friendship, love, irony, humour, parenthood, literature, and music, and the chance to take part in battles for the liberation of others cannot be called 'meaningless' except if the person living it is also an existentialist and elects to call it so.’

I meet Patrick Mitchel, Director of Studies at Irish Bible Institute.  Patrick is my oldest friend, since Sullivan Prep in Holywood, 1967.  We have lunch in Trinity College before he returns to work.  I go shopping.  Mindful that this may be my last Christmas, significant thought and budget go into fitting gifts for the women in my life!

I get a taxi to the Institute around 5-ish.  Exhausted, I’m given soup and bread before a tour around the impressive college.  I’m a manager in BT, not a theologian.  However, provoked by traumas personal and global, I ask Patrick my perennial question ‘So, does everything work out OK in the end?  Does Love win?’  We don’t arrive at a tidy answer.

Patrick gets me onto the Enterprise.  Half an hour later I discover he has slipped a gift of ‘Surprised by Hope’, by Anglican Tom Wright, into the Kilkenny Shop carrier.  Unexpectedly, the understanding expounded in this book sustains me through the months ahead. 

17-December-2013, and back into hospital for high-dose ‘conditioning’ chemo, which kills the immune system, before bags of previously harvested stem cells will be returned on Christmas Eve.  Ascending in the lift up to Ward 10 North, I recall David Tennant’s final words before his Doctor Who regeneration, ‘I don’t want to go!’ and say to Ruth I’m quite OK if we go home right now.  Ruth says we’re heading for ‘Tim Version 2’ and, hand-held, I’m firmly guided back across the threshold of 10 North into isolation Bay J.  I say to the Nurse that I’m terrified of the procedure – possible risks and definite side effects.  ‘That’s easy.  All you have to do is keep breathing.’

During this challenging month, physiologically and emotionally, my ‘shields are down’.  Mindful of suffering on the Ward and suffering of friends, I can’t cope with news items such as Hurricane Agaton in the Philippines.  Instead, on recommendation of my son Downey, I listen to Mumford & Sons sing ‘Ghosts That We Know

So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold on with all of my might
Just promise me that we'll be alright

I do hold on, but will we be alright?   Or does each life end only in putrefaction or crematorium ashes?

As Tim version 1.0 recedes so that, hopefully, Tim version 2.0 can emerge, I share day-by-day the dying Christopher Hitchens’ heartfelt appreciation of friendship, love, irony, humour, parenthood, literature and music.

And also, over time, Tom Wright’s exposition of the implications of Jesus’ resurrection sinks in.

The night before He dies, Jesus says: ‘Because I live, you also will live.’

On Sunday morning, Mary goes with spices, expecting to anoint a decaying body.  Instead, she is first to see the risen Lord, but misperceives Him to be the gardener.  Somehow, His appearance is changed.  His resurrected body represents both continuity of life and God’s ‘future-arrived-in-the-present’ (p.57).

With the church at Colossae, Paul used the phrase ‘Christ in you, the hope of glory’.  Until now, I had thought of that in terms of each individual’s private experience.  However, as Tom Wright says

‘When God “saves” people in this life, by working through His Spirit to bring them to faith, and by leading them to follow Jesus in discipleship, prayer, holiness, hope and love, such people are designed – it isn’t too strong a word – to be a sign and foretaste of what God wants to do for the entire cosmos.  What’s more, such people are not just to be a sign and foretaste of that ultimate “salvation”; they are to be part of the means by which God makes this happen in both the present and the future.’ (p212)

Now, writing late in 2014, I’m back to health, work, church and the gym. 

Tim Version 2.0 has a firmer hope that there is a designer of this world created as good, with a plan to make all things new again, inaugurated via an empty tomb.

However, I have no tidy answer for people suffering abuse, disease, poverty, severe learning difficulty or in conflict areas.

Since re-entering normal life, I have been in the presence of people who have suffered beyond imagination and yet have shown courage, cheer and somehow a generative approach for others.

Jesus calls us friends, not servants.  But, ‘Hope’ is a verb, an action word.  As we pray for His Kingdom to come, what might we do to work out our prayer?

 

Published in the Irish Methodist Newsletter, Jan 2015 issue.


Living with Lymphoma – a most unexpected adventure

‘Life is either a daring adventure or nothing at all.’ (Helen Keller)

September 1984.  I’m 20 years old, on a diet and have lost weight with unmerited success.  The doctor wants a chest X-ray.  Within hours I’m in the Royal Victoria Hospital, Belfast (RVH). Biopsies identify a mass as Hodgkin’s Lymphoma.  Five months of chemotherapy follow, with unimaginable nausea – then a month of radiotherapy to my chest.

With my dad terminally ill, Holywood Methodists kick into action.  Mr Jack Wilson co-ordinates a rota of daily drives: Belvoir for Dad, RVH for me.  Friendly faces show up regularly with casseroles. I learn from this man of God the value of leadership in co-ordinating compassion and practical care. One night in Ward 22, I wake up following chemotherapy.  Opening a card and reading the comforting words, the room fills with a sense of peace I haven’t experienced before.

Access to my veins becomes tricky.  I experience ‘anticipatory vomiting’ as doctors approach with syringes.  Reflecting on my terror of this procedure – administered for my benefit – I become a supporter of Release International, established by Richard Wurmbrand, that supports people imprisoned for their faith.

Life proceeds.  I get a job with BT.  I meet Ruth and am profoundly blessed to marry this beautiful, insightful woman in 1994.  Twin boys Chris and Downey arrive.

May 2008.  The growing mass in my neck is diagnosed as Non-Hodgkin’s Lymphoma.  It’s just bad luck or, possibly, a ‘late effect’ of Hodgkin’s treatment.  Ruth asks what if it comes back after treatment.  The succinct answer – ‘limited options’.

Cancer treatment had moved on dramatically.  Anti-sickness drugs neutralise my brain’s nausea response.  Chemotherapy is administered as an outpatient.

Treatment days pass uneventfully, featuring helpful chants from Margaret Rizza.  One favourite track (recommended!) is, ‘You are the centre, You are my life…’

From that summer one day shines, infused with an unexpected peace.  While on a drip, Ruth kissed me on the forehead.  A friend from Corrymeela called in.  He kissed me on the forehead.  One of the nurses kissed me.  Small gestures… with abiding impressions of presence and compassion.

I learned to respect expert counsel from the doctors.  I was advised to save sick leave until, after three months chemo, I truly needed time off.  A low moment during my recuperation occurred one rainy autumn morning, with the house empty.  Waiting for a PET scan, I was convinced the disease remained.  Thinking I’m ‘going down’ and feeling ‘anticipatory grief’ for Ruth and my 14-year-old sons after my likely demise, I cried to God ‘I give Ruth and the boys to you’.  The consultant rang the following week.  ‘The scan is clear, you are in total remission.’

Time passed.  Worries about relapse receded and ‘thinking positive’ became more natural.  We had family around for the 2012 Olympics opening ceremony.  Serving drinks, I suddenly found myself weeping with thanks amongst those I love, blurting out, ‘It’s just good to be alive’.  I started to look forward to my five-year survival, anticipating a celebration barbecue in August 2013.
June 2013, I’m worried about a neck lump and bowel symptoms.

By the end of August, I’m critically ill with tumours obstructing bowel, jaundice, pancreatitis, no sleep and hallucinations.  Admitted to Belfast City Hospital, I’m too sick for surgery or chemotherapy.  We update our wills.  I draft my funeral service.  During September numerous doctors, nurses, laboratory and ward staff stabilise me.  Chemo can start, with a view to a stem cell transplant in December.

Ruth and my sister Rozzie visited daily.  Rozzie helped me set up the visitors’ room for a ‘Strictly Come Dancing’ TV date with Ruth.  Friends left food at our home, sent cards and texts.  Church prayer was intense, including a prayer-filled, hand-knitted blanket from Carnalea Ladies’ Connect group.

From those five months in hospital, I still ponder an experience one October night.  Attached to six pumps, on chemo, I had a stomach bleed.  A blood sample had to be obtained peripherally – ie, from my veins.  A nurse tried – no joy.  A doctor tried – nope!  A roving ‘Hospital At Night’ team member, a blood-taking expert, was called at 4.00a.m.  Agitated, I’d been asking God for help, but my veins just weren’t obliging.  Surveying my arms, she explained this would not be pleasant.

The needle went in deep and fast, with confidence and skill – a sharper needle pain than I have ever experienced.  Just as the needle went in, totally unexpected, I received a clear impression that ‘Angels were active when Jesus was on the Cross’.  I don’t ‘do’ angels, but this was very clear – not a visual image, but a definite impression.

After a moment, I said, ‘Can I share an experience I’ve just had?’

‘Yes.’

I articulated what I could.

‘As you were speaking I felt a tingle down my spine.  I’m actually just reading a book about angels.’

We didn’t say much more.  I offer no tidy conclusion for this story.  The fact that Jesus was pierced has come into clearer focus for me.  Seeing images from conflict zones, I understand that we have a suffering, as well as sovereign, Lord.

In Helen Keller’s terms, my adventure has been an involuntary roller coaster ride rather than ‘daring’.

On this adventure, the phrase ‘show up’ has become very meaningful for me.

All sorts of people have shown up for me and my family in extremis over the years.

God’s love can be experienced as ‘closer than hands or feet’ in diverse situations – maybe, in some inexplicable mystical experience, but more often through a card, kiss or casserole.

Recently, my son Chris quoted from the film Bill and Ted’s Most Excellent Adventure where two teenagers prepare a history talk using a time machine.  Bill says: ‘Be excellent to each other.’

In his hymn, Charles Wesley asks us to ‘Kindly help each other on, till all receive the starry crown.’

The exact nature of the ‘starry crown’ remains vague for now, but each of our adventures presents ample opportunity to show up for others – whether family, friend, colleague or stranger.

 

First published in The Methodist Newsletter, November 2014 issue.