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June 2018

Post-transplant experiences - initial reflection

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 ...

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.