One Year post Donor Stem Cell Transplant - A Year of Milestones
16 December 2018
< 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."
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.
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.