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. 

(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.

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

< Please note - in terms of diagnosis, treatment options, outcomes, high-points & low-points along the way, everyone's path through any sort of transplant will be unique. For patients and carers, take anything here that's useful. Discard what's not helpful. And, keep in close contact with your medical team. Tim >

This weekend, 15 December 2018, was a new birthday for me. I am one year old following last year’s donor stem cell transplant. This radical and risky process has upgraded my blood from B Rh+ve to A Rh+ve and was my only chance for ongoing life. In a pre-transplant St James’s hospital consultation, it was made clear that my chances of survival to 18 months post-transplant were one-in-four. 

In my five run-ins with blood cancer over 34 years, certain dates are irrepressibly hard-wired into my thinking, especially the first diagnosis of Hodgkin’s Lymphoma on 24 September 1984.

Having relapsed with Non-Hodgkin Lymphoma in April 2017, my prayer to God in May 2017 was concise:

“Please help me get to transplant and through transplant”

Getting to transplant required a ‘Complete Response’ to the toughest chemo of my life in Belfast City Hospital leading to clear PET scan.  That was achieved after some uncertainties. This good news meant that Professor Vandenberghe at St James’s Dublin could accept me onto the Transplant Programme. She was explicit about the rigours of the transplant process, referring to it as “Tiger Territory”, due to multiple risks.

One lesson learnt from my first transplant in 2013, that used my own stem cells, was the value of having target goals. These aims give me

• a sense of forward-looking purpose
• an intentional focus for energy rather than being distracted by trivia
• sense of participation and buy-in from others

So, over the past year I have taken opportunities to set target milestones, remaining avoidant of infection and mindful of my energy constraints. The core transplant process felt like tunnelling deep underground. Milestones helped us know we were making progress forwards through the tunnel, out the other side and have increasingly given life some direction in navigating the post-donor-transplant terrain with its significant challenges.

Some milestones were defined well in advance, which I could look forward to and plan for – such as making Ruth her birthday cake. Other milestones listed here are significant events that came onto the radar as we moved forward.

15-Dec-2017  Day Zero - Infusion of donor's stem cells

Someone, somewhere signed up one day as a potential stem cell donor and then, very kindly followed through with a stem cell donation giving us hope and me life. After a week of aggressive conditioning chemo to remove my original and failing immune system, Ruth was with me as the donor’s stem cells arrived by courier from some other European country.

Lovely Nurse Martha really helped us as the arrival of stem cells slipped from the scheduled Thursday into the early hours of Friday morning. People ask what the ‘transplant operation' involves. Actually, no surgery is involved. Rather, it was a quite undramatic 45 minute infusion of two bags of cells just like a blood transfusion. Our dear friend Patrick Mitchel arrived at 2 a.m. and I will always be glad for his presence and for making sure that Ruth got back to the nearby StayCity apartment in the early hours.

31-Dec-2017  Retirement from BT

BT had been very supportive about the possibility of my returning to work. However, an increasing understanding of potential issues for a post-donor-transplant 55-year old meant I’d decided it was time to leave work and focus on rebuilding my strength. I am frequently asked "What do you miss about work?"  I miss the working relationships, the sense of shared achievement, lots of rich learning on leadership, technology and delivering change through leading across teams to achieve beneficial solutions. I remain, and will remain, in touch with former colleagues who have demonstrated ability to navigate their own sometimes challenging terrain – an attitude and skillset that I find compelling.

05-Jan-2018  Engraftment - new immune system boots up

Engraftment is a critical milestone. The donor’s stem cells have cleverly migrated to the recipient’s bone marrow, taken up residence and started, factory-like, to produce an entirely new immune system’s blood cells – red cells, platelets and an intricate system of white cells to fight infection. Early in January, Prof Brown said on one of his Ward Rounds "This is a great graft". For me, this was a powerful moment. Then, and still with me today, a sense of “Reaching for Life”.

27-Jan-2018  De-personalisation - my "Camberwick Green" moment

A late entrant to my Milestone list is an unpleasant psychological experience. Unable to sleep due to Industrial-strength steroids which were required to manage skin Graft Versus Host Disease, but can have effects such as mania/paranoia, I had a weird sensation of becoming smaller and smaller, vanishing towards nothing. Before I actually vanished (if that's possible?) a car horn outside sounded and, somehow, I was able to use that as an anchor to come back. In retrospect, this 'depersonalisation' experience stands out as a milestone, since I'm now aware that there's a gamut of psychological experiences beyond my own experience that I just don't know about. As I 'came back', my mind came up with a suitable metaphor from childhood TV. Viewers of BBC in 1966 may remember this Camberwick Green closing sequence which captures my depersonalisation experience perfectly!

05-Feb-2018  Friends Patrick & Ines for meal in Apartment

We invited our Dublin-based friends Patrick and Ines to our Apartment for dinner to say "Thank you" before we headed back home in early February. I was very weak and not feeling as well as I'd expected for our imminent return up North. Later that week, infirm on my feet, I was fairly teary saying thanks and goodbye to all of the St James’s staff. In a final appointment of a long day Ruth, however, was spectacularly teary when Prof Vandenberghe examined me and exclaimed “What’s happened to you???!!!” and it became clear that I wasn't going anywhere. Our St James’s sojourn was extended. As the Outpatient Nurse Co-ordinator said to me “Welcome to the world of transplant...” and I was readmitted.

28-Feb-2018  Beating the Beast-from-the-East - actual trip back to Belfast City Hospital

28th February was set as the new date for transfer back to Belfast City Hospital. This coincided with the 'Beast from the East' major snow storm. There was great uncertainty until the last minute whether it would be safe to make the ambulance trip. It was indeed a tense ride for us, chased by the storm with visibility poor due to frozen windscreen wash. It was a relief to be welcomed back to 10 North in the City Hospital. I thought we'd be there for a week, Ruth thought probably two weeks.

17-Mar-2018  Home-bake of Ruth's Birthday Cake

Ruth’s birthday is St Patrick’s Day and, from six months before, I envisioned being at home, assisted by friend & neighbour Linda Bell’s recipe and her pre-weighed-out bags of ingredients  for me to make Ruth a special celebratory birthday cake.

Target milestone dates don’t always work out as expected.

The couple-of-weeks recovery stay in Belfast City Hospital turned into a further two months as an in-patient. On St Patrick's Day, rather than birthday cake making, there were multiple bowls of blood due to stomach bleeds. A stomach endoscopy and emergency surgery to put staples in my gullet were needed to stop the bleeding. Also, in the following weeks, a nasty painful abscess at the other end of my gut also needed surgery and weeks of, well, let’s just say careful management!

This was one of three zones in the past year where I knew I was potentially close to death. I know and acknowledge fear, in that state, especially through a night of cry-shouting to Jesus for help due to indescribable pain. “Jesus wept” is the shortest Bible verse. My trust in the close company of a God who became one of us, and is acquainted with suffering, was tested.

25-Apr-2018  Home at last

After five months as an inpatient, finally getting home on 25 April 2018 was a major milestone for us all. The prime emotion was a calm thankfulness for the gentle home setting, rather than any exuberance. A welcome home banner greeted us, made with love by Rosemary Maxwell.

13-May-2018  Short walk & talk outside with the boyos

I have learnt the importance of exercise. The research into benefits of exercise for recovery is now substantial. So, after five months of confinement, one planned milestone was a walk in the fresh air enjoying conversation with my sons by the sea.

“Being there” is a title of an interesting Peter Sellars film and I am thankful to ‘be there’ for Ruth, our sons, family and close friends.

14-May-2018  24th Wedding Anniversary

One life lesson learnt from my first transplant was “If there’s something to celebrate, celebrate.” So, with lots of anti-infection measures deployed, we enjoyed an early dinner to celebrate our 24th Wedding Anniversary at Bangor’s Salty Dog.

24-May-2018  Visit son DJP in his new house

During the year, our eldest son moved into his own house and, with Ruth’s help, set about making it into a lovely home. It has been great to see him established like this. While in Dublin for three months, I really valued WhatsApp since I could offer some experience and support on his house purchase.

25-Aug-2018  Celebrant role at Daniel & Tammy's Wedding

Daniel is the eldest son of our good friends Maurice and Adrienne. In November 2017, before our Dublin foray, Dan and his fiance Tammy asked me if I would be celebrant at their wedding in August 2018. I was surprised and felt privileged to be asked. The wedding ceremony and reception were to be at Kilmore House, Glenariff.

25 August became a sacrosanct date. It was a privilege to work with Daniel and Tammy on how they wanted their wedding ceremony to be. In the background, I agreed with my consultant Dr. Finnegan that, in the unlikely event of my being in hospital, we would do everything possible to get me up and out just to do the ceremony. Daniel’s brother and Best Man Niall was also ready to step in with script at last minute if required.

Everything worked out. Tammy and Daniel’s wedding was just superb. Unknown to me, there was a last-minute change of ‘down-the-aisle’ music to “The Book of Love”. Right at the start of the ceremony this evocative song, from a powerful episode of the TV series Scrubs. This is in my all-time top 5 TV episodes – beautiful music accompanied by hopeful pictures of future relationships and timely emotional breakthroughs. Caught off-guard, tears were in my eyes as the beautiful Bride and bridal party, in the epic beauty of the sunny Antrim Glens, approached.

We proceeded with their lovely outdoor Ceremony, ending with this blessing

May you have many joys,

and be the light of each other's days.

May all that you are, always be in love;

And may all that is love, always be in you.

May you always see and encourage the best in each other.

May the challenges that life brings your way

make your marriage grow stronger.

May you always be each other's best friend

and greatest love.

01-Oct-2018  Return of the stairlift

To enable me to get home from hospital we required a stairlift since, due to the impact of 'proximal myopathy' on my muscles due to steroids, climbing stairs to the bedroom and bathroom wasn't possible.

As energy and strength improved, I didn't need the stairlift much in September, so it was removed by the very efficient man from Stairlift Solutions, Bangor.

29-Oct-2018  Hickman line removal

A Hickman line is a double- or triple-tubed catheter in your upper body to enable drugs/nutrition to be delivered and lots of blood samples to be taken. After 11 months, this valiant enabler of my treatment was getting blocked up, and was an ongoing infection risk. So, it was time to remove and to revert to the few remaining serviceable veins in my right hand. This was in the middle of a medically and psychologically difficult period, which may get its own blog write-up! Suffice to say that, over a few days, the Belfast City apheresis team nurses were professional and compassionate when I found troublesome memories related to venous access of many previous procedures coming at me.

31-Oct-2018  Resume driving

Having not driven for a year, medical reports, insurance and Driver Vehicle Licensing were all lined up and I could drive again. Throughout our married life, Ruth and I have always shared one car. With Ruth working, and local Translink train to BT office no longer on the agenda, we bought a second car enabling me to get to hospital appointments without Ruth, and to generally get around without infection risk on public transport.

Mobility Is Just Great !!

19-Nov-2018  25th Engagement Anniversary

On 19 November 1993 I asked Ruth to marry me and she said "Of course!". Since then we have always marked our engagement anniversary - the moment when we committed to each other. So, for the first time in 15 months, we were able to get a few nights away at The Bushmills Inn. 

15-Dec-2018  New First Birthday!

So, today, is first birthday for my new upgraded self. 

"Well, I'm back."

Thank You...

Since April 2017, I have received so much support and care.

Thank you to Dr. Lawless & team, City Hospital, who got me to transplant.

Thank you to Prof Vandenberghe & team, St James's Hospital, Dublin, who got me through transplant. Prof Vandenberghe said "It will be harder than you think it will be". Professor Vandenberghe was right.

Thank you to Dr. Finnegan & team, City Hospital, for detailed and sustained post-transplant care.

And we have also really appreciated the professional care of Bridgewater, Apherisis and Holywood District Nursing teams.

Thank you to the five chaplains, working in Belfast City and St James's who had the knack of turning up at the right time.

Thank you to my donor.

Thank you to family and friends for all of the concern, presence, practical help, prayers, support and love.

Thank you to BT colleagues, Carnalea Methodist Church and Corrymeela people for lots of help.

And thank you Ruth, a constant presence through tough times, my ezer kenegdo - lifesaver alongside me - for your skill, humour and resilience and for just being here with me.

What's Next?

Later in December, I will write a further post on intentions for next year. Until then, best wishes to you through this Advent season, for Christmas and for the New Year ahead.

Tim

Post-transplant, it was great to finally get home at the end of April after twenty weeks; twelve in St James’s Hospital Dublin, and a further eight weeks in Belfast City Hospital.

In the initial five weeks since getting home, the direction of travel had been onwards and upwards, albeit slowly. Proximal myopathy (muscle weakness), a side-effect of industrial-strength steroids, means that even climbing a couple of steps is tough going. Getting a stair lift installed at home has been an absolute godsend.

When I became ill again in April 2017, the lymphoma symptoms were gut related. In recent weeks, my gut has been consistently upset and, concerned, I mentioned this to my wife Ruth and our post-transplant Consultant Dr. Finnegan. Both seemed fairly unconcerned as this could be normal post-transplant effects, rather than something sinister. Nevertheless, an outpatient CT scan was booked for late June. These periods of uncertainty - waiting for scan and result - while ongoing symptoms fuel anxiety are not easy. My clinical psychologist recently explained that someone in my position can experience ‘trauma thinking’, where energy is spent mulling over potential sorrowful outcomes. This has indeed been my experience in recent weeks. What to express to others, when, and how, is not straightforward – how can you further burden those most close to you with your fears?

During the first weekend in June I wasn’t feeling great. The trajectory felt downwards. On the following Monday it was day 2 of the next photopheresis cycle in Belfast City Hospital. This rocket science is like an oil change for your blood to help reduce effects of Graft versus Host Disease (GVHD) where the new immune system attacks the patient’s tissue – typically gut, liver or, in my case, skin.

Feeling unwell crossing the threshold of the hospital I thought “Will I walk out of here?”  Soon, the nurse was connecting me to the photopheresis machine to initiate the high-tech process. Within ten minutes, severe rigors had kicked in with uncontrollable shaking – my trauma thinking was being realised. Quickly, more nurses and a doctor appeared, suspecting an infection. They offered reassurance that this was well-known territory, probably infection of my Hickman line – a catheter in my chest since November for taking blood and giving drugs.  Sure enough, my temperature spiked within minutes. Three strong antibiotics were started IV as ‘cover’ and I was once again admitted as an inpatient. By Tuesday, the bug was confirmed with the indicated antibiotic administered daily by 90 minute infusions 6 a.m. and 6 p.m.

Throughout the inpatient week that followed, I felt anxious, even as the infection seemed to be coming under control. Only the CT scan could remove uncertainty and my anxiety regarding the gut symptoms. Fortunately, a scan slot became free at short notice and, so, on the Wednesday I found myself waiting outside one of the CT scan suites. Since first diagnosis in 1984 I have had many scans – CT, MRI, PET.  I particularly felt the weight of this one. Sitting there, from nowhere, a phrase came to mind clearly

“My path to life is free.” 

I sang in Holywood Methodist Church choir for years and occasionally we would sing the hymn with that line – “in Heavenly love abiding”.  It has great themes and words ... http://library.timelesstruths.org/music/In_Heavenly_Love_Abiding/

Any recurrence of tumours would be grim news so, mulling the phrase from the hymn, I reflected how it might apply to me. Would the scan be clear, with hope for ongoing life with my family or, rather, was I in the zone of the path to life beyond what we know here?

The scan was much faster than the older technologies of earlier decades. Expecting the result the next day, Ruth and I were surprised to see Dr. Finnegan appear at the door to our side-room less than half an hour after returning to the ward. “Scan’s clear.” In that moment, real joy and relief!

By the weekend, I was well enough to be granted day release from hospital to head home between the twice daily antibiotic IVs. So, on a sunny Saturday morning, we headed home treating ourselves to brunch on the way. As Ruth parked the car, Monday’s thought on entering the hospital “Will I walk out of here?” came to mind. I had indeed walked out of the hospital, with Ruth at my side once again, sharing a moment of joy in contrast to many moments of difficulty over the past year.

We have been dealing with this bout of illness for fourteen months and coming back from the donor transplant has been the toughest of my five run-ins with blood cancer. While we were in St James’s Hospital, Dublin, Methodist Chaplain Rev. Stephen Taylor visited us in the isolation ward. I reflected then on many experiences of God’s love, on Ruth’s constant presence, sacrificial devotion, costly love and how closely the two seemed to be the same stuff … mingled. More then ever in our twenty-four years together, I was, and am, experiencing the love of God through Ruth.

Enlisting Google’s help to better understand this mysterious yet definite experience of joined-up human-divine love, I discovered the phrase “ezer kenegdo” in the Old Testament. In the book of Genesis, God says that it is “not good for the man to be alone” and the woman “ezer kenegdo” is created. The phrase appears about twenty more times in the Old Testament, always describing God Himself, when someone is in distress and desperately needing help. “Ezer” means lifesaver and “kenegdo” means alongside. One blog expands on the theme, here, worth a look if you like Tolkien’s Lord of the Rings.

The past few weeks have been another road bump and I’ve taken a step back in terms of strength and mobility. I’m grateful for so much support – medical & nursing teams, stem cell and many blood donors, support from family and friends. I’m very conscious of other people facing difficult  situations in life, many of whom do not have the support that I have received.

I am more aware now of the importance of presence, kindness and practical help and see God’s love and human love potentially mingling together so that, hopefully, people going through desperate times can experience “ezer kenegdo” – a lifesaver alongside.

In our needy world, there are people to whom we can be “ezer kenegdo”, helping another facing difficulty on their path through life.

Today is Day 100 post transplant, a recognised milestone in donor stem cell transplant. 

Here in hospital, the doctors confirmed this morning that, using the tractor metaphor of a BT colleague, I am still 'between the hedges' !

This donor stem cell process was always going to be tough for us, given my medical history, with challenges along the way. Arguably, I've been unlucky with skin GvHD, diabetes due to required steroids, several infections and more recent roadbumps.

In difficulty, we have experienced kindness.  I needed surgery for an abscess on Thursday night; as the general anaesthetic was administered, I once again surrendered self to the process and others' skill. Before going under, I thanked the surgical team for their help.  The anaesthetist said "That's why we're here" ... it is good to have a generative purpose in work/life, and there's lots of that intention within the NHS.

We have come to see this transplant experience as similar to water rafting - not only are there visible potentially bruising rocks to be navigated, but there's also a sense of vigilance given that other unknown hazards may lie waiting beneath. "Brace!, Brace!" from the Tom Hanks film 'Sully', landing Flight 1549 on the Hudson, comes to mind.

In May 2014, my convalescence took us to Barcelona for our wedding anniversary. 

As we walked into the La Ramblas Plaza, Psalm 18:19 came to mind:

He brought me out into a spacious place; he rescued me because he delighted in me.

For now there is, once again, a level of challenge, confinement & weariness after 11 months of illness.  We yearn for rest, freedom & strength.  And, we're thankful for encouragement, practical support and prayer along the way.

This Palm Sunday, wishing everyone, especially people facing any difficulty, an Easter week which brings a sense of Hope.

Today across the UK, after 9 weeks' training, BT people ran a parkrun as part of a Couch-to-5K programme and in support of Leukaemia & Lymphoma NI's research into blood cancer.

Facebook photo album from Belfast's Victoria parkrun is at http://bit.ly/2i690Xp 
(no Facebook account required to view)

Congratulations to all of today's runners, especially first-timers, and thank you for all of the support for LLNI.

Donation site is https://mydonate.bt.com/fundraisers/btcouchto5k

(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.

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.

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.

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.

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.   

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.”

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.  

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

A milestone today for the #TimPageFitForLife project...

BT colleagues presented the amount raised through 2016 - £3800 - to the LLNI team's Professor Ken Mills, Joanne Badger and LLNI's recently announced new Chairman Richard Buchanan.

Then, the BFSEC organising committee kindly held a raffle this evening, raising a further £793 for LLNI - a total of £4,593 from BT colleagues.

This makes a grand total to date (including RQIA support, Linda Bell's coffee morning and the overall 310 donations) of £14,593.

As part of the BFSEC review of the year, BT's Cathal O'Neill prepared a montage of the 22 runs, with a great sound track.  

Enjoy!

100 prospective stem cell donors.

From the start, this was a #TimPageFitForLife life-saving project objective.  We made solid progress in March, with 62 people registering as potential donors with DKMS UK via sign-up sessions, first, at the BT Belfast BFSEC Social Committee Bake Sale and, then second, at Victoria parkrun.

Donor registration sessions take some organisation and, although our intention was to arrange sessions at several other parkrun venues, a combination of injury, busy-ness and venue logistics meant we arrived in August still below that target at 62 people signed up.

Sometimes, I take a £10 web-flyer fare on the Enterprise train down to Dublin as a reflective away-day and, so it was, sitting on the Dun Laoghaire pier in the sun it hit me like a brick

“Organise a Donor Drive for the whole of BT Riverside Tower, all 12 floors”

Apparently, for every 20 people signed up, it is likely that, over the next 10 years, someone will be able to have a potentially life-saving transplant.  Ruth and I were hopeful we could sign up another 38 people to reach our target of 100, bringing hope to some people who would one day find themselves in medical dire straits.

Patrick Ryan of DKMS UK was again helpful and sent a full set of supplies for our third Donor Drive – posters, flyer leaflets, registration sheets and the essential cheek swab kits used to take tissue samples for tissue matching in the lab.

We set a date for Tue 13-Sep, booked the Customer Events area for the day and emailed everyone in Riverside Tower details of the event a few days in advance.

First step was to recruit 12 volunteers – BT people and also Patricia McAuley & Page McLaughlin.

Volunteers receive half an hour’s training to become familiar with the registration process.  The day before the Drive, Ruth helped with the training, during which we took the opportunity to sign up several people for real to illustrate the process.

D-Day arrived.  We were well prepared, good-to-go, but had no idea of the level of interest or number of sign-ups we might achieve.

When the registration process completes, people’s details go on a database and they receive a DKMS stem cell donor card.  Pauline Clark, who dropped by as we were starting, could proudly show her card from a previous Donor Drive.

As ‘Front-of-House’ guy, I manned an Info Desk in Riverside Tower Reception, explaining what we were doing and inviting people to find out more.

We ran from 10.00 – 15.00.  At times, our waiting area was needed when all of our eight sign-up stations were in use.

We had a steady stream of people registering through the day – completing the paperwork…

… and then doing the cheek swabs.

When 3pm arrived, we had well-exceeded the 38 registration required to get to 100.

We were delighted that 135 people signed up on the day, many of whom were in the middle of busy work days, and took time out of their break to understand the process and sign up.

Ruth and I would like to thank the Donor Drive volunteers, everyone who took time to find out more, everyone who signed up, the BT Riverside Reception & Security teams that helped with logistics and, especially, the DKMS UK team for their life-saving work.

Information on DKMS UK is here.

If you would like to donate to DKMS, their MyDonate site is here.  Each registration costs £40 – good value for money.