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.
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.