Time … to be thankful, to be tested, to be trusting

 “Every morning, look ahead and remember: God will show me steadfast love today. And every evening, look back and declare his faithfulness."

Today is a day for celebration! Exactly one month ago, after only one weekend at home, Geoff returned to hospital by ambulance, and we didn’t know if he would come home. Yet he has been home for more than three weeks! Four weeks ago, Geoff began his first supply of the targeted drug therapy, and we didn’t know if he would finish it. Yet this week I needed to order a new supply which he began today! From the time of Geoff’s diagnosis we didn’t know if the future would hold anything other than palliative care. Yet there are good days when special family times or outings or projects are possible!

Settling into life at home has been a lengthy process with many wonderful and timely provisions. Being linked in to the home-based palliative care a month earlier than expected has given us a team of health professionals to support us in managing the challenges of Geoff’s condition, enabling him to be cared for and surrounded by our family. Each week ‘our’ nurse visits to monitor Geoff’s health, provide advice about treatment decisions, communicate with the oncology team and coordinate the involvement of palliative care staff (doctor, occupational and physio- therapists, pastoral care worker). We are so thankful for the ongoing loan of a ‘hospital’ bed, wheelchair, walker and bathroom equipment which make so much difference in the practicalities of daily living.

On ‘bad days’ Geoff’s confusion and/or tiredness become progressively worse, sometimes to the point of not remembering an answer to a question asked only moments earlier or thinking his perception of what is happening around him is the opposite of reality or even refusal to take his medication because nothing is making sense.

From one day to the next there is no predictability except that if God gives us another day together, Geoff will need me by his side.

On 'good days' Geoff has been thinking clearly enough to plan end-of-life matters, tidy up homeadmin for handing over to me, discuss with our sons various aspects of finishing off the carport and redesigning the garden, organise church files to give to the elders, oversee the removal of his ‘office’ from the church building to home, make some progress on a writing project, enjoy an outing, participate in mealtime conversation and devotions, follow the plot of a movie, remember the events surrounding photos and play cards according to the rules!

My optimism rises on the good days, I quickly become hopeful that we may have months to enjoy together and perhaps the Lord will even strengthen Geoff to finish one of his writing projects. Before long, the hope is ripped to shreds by the return of confusion. I reflect on the creeping in of puzzling comments and signature expressions that are painful to recognise. Realism reminds me there is no prognosis. Our hearts are joined in grief as Geoff speaks, “I’m deteriorating.” 

The ever-present difficulty is to understand the cause of the ‘bad days’ and to identify changes that may improve the treatment outcomes. Progression of the cancer, unrecognised pain and side effects of medication may all be contributing.

Searching for understanding and answers: reading and translating the medical jargon in the discharge notes; researching particular aspects of the cancer, the drugs, how they work, the half-life, the unwanted side-effects; discussions with a trusted friend-advisor-counsellor, the nurse, the oncology team, the GP, appointments, scripts, endless trips to the pharmacy.

At Geoff’s last oncology appointment, the lung cancer specialist said that if the cancer is directly causing the cognitive impairment a continual decline would be expected, if the targeted drug is working gradual improvement would be expected. More information is needed. An EEG to examine the brain’s electrical activity plus the involvement of a neurologist is planned for next week. 

“Please God, intervene, give the medical experts understanding, grant us more ‘good days’ but most of all hold us tightly and help us trust in YOU.

Thank You for fun family evenings around the fireplace, walks in the sunshine, the miracle of a canoe outing and the joy of lifting our hearts in worship with our loving and caring church.”

Amongst many encouraging messages, came a devotion “God will Daily Bear You Up”, full of gems which I am treasuring in the midst of my daily struggles. "Our worst days have a way of making the future feel impossible...We do not need to know how he will sustain us tomorrow. We need to know, even with a mustard seed of faith, that he will get us through today...He catches every sigh (Psalm 139:4). He slows down to walk through every 24 hours with his children...If Christ has carried our sin to the grave, will he not also carry us through today? ...the wreckage of our lives is never the final word about God’s heart toward those who hope in him...Our dreams falter and fail...Even on our most miserable days, when our outer self is wasting away, God is on his potter’s wheel, shaping us, forming us. “Our inner self is being renewed day by day.”...“It is good...to declare your steadfast love in the morning and your faithfulness by night" (Psalm 92: 1-2).