As a cyclist there are frequent conversations about pain. How much pain you can endure, how you train in your paincave, that pain is purely mental and how you always have at least another 10% in reserve to push through the pain barrier. Our relationship was one that revolved around pain. It’s how we shared our first kiss (in hospital) and how we shared our last (in palliative care). We embraced pain in a positive way which is not to say it wasn’t horrible at times.
I’ve reflected a lot on the levels of pain my husband and I both endured during our relationship and feel it’s one thing I have almost mastered in life. Similarly the ability to control the mental anguish that goes with it.
Caring for someone you deeply love with a terminal illness that has extraordinarily high levels of pain must be one of the most difficult burdens to carry. A memory that continues to haunt me was missing that window of opportunity to administer the drugs to keep the pain at a manageable level. I had decided palliative care was best for all of us to be continued in the home. That meant daily nursing visits and my fast education into a world of medical responsibility, whilst looking after my newborn.
Breastfeeding my rapidly growing son every two hours and trying to catch a little sleep while he did was a challenge enough. Bordering on exhaustion the cancer decided it was time to really test my strength. The tumour was spreading swiftly and the fluid surrounding my husband’s brain was causing immense pressure translating into extreme pain. My bedside table was littered with boxes of endone, morphine, dexamethasone, levetiracetam and rivotril all purported to keep my husband alive and comfortable. The drugs worked but I was riddled with guilt that I was contributing to his death by poisoning him.
I must have slept through the 2am alarm as I suddenly woke just after 4am to the most dreadful groaning noise that continues to ring in my ears to this day. Checking Jack he’d slept through a feed which unusual but I decided nothing to be concerned about. My obstetrician joked that I now just had to keep him alive the day I was discharged. I remember thinking how ironic that comment was.
Rushing to my husband’s bed he was lying in the foetal position with his hands clawing into his head. The look of dread and fear in his eyes and that sound, the deep guttural agony, I’d missed the window the nurses had described. Jack woke up and wanted to be fed and Russ needed help. Feeling torn and trying to think clearly I went to Jack. My motherly instinct must have kicked in as I rushed to feed him first then deal with Russ.
With Jack nursing happily I rummaged through the boxes of drugs and wondered if I would have to double dose him to get the pain down. The nurses said no matter how much I gave him I couldn’t kill him which was reassuring. I rang the 24 hour neuro-oncology hotline and told them my plan. They agreed it was a good one and even suggested he may need a higher dose. Russ hated the drugs always thinking he could control the pain with him mind but we were definitely beyond that now. Placing Jack on Russ’s chest he instantly calmed, his breathing slowed and the sound quietened a little. I gave him some water and a handful of pills. Reading his thoughts and with silent tears rolling down my cheeks I urged him to take them. It would still be a few hours before the pain would subside.
Throughout the time I cared for Russ I was often asked how I managed especially with a newborn. Our relationship was one of selfless caring, love and ultimately conquering pain together, be that on the bike or later due to ill health. Never once could I complain as nothing I endured was comparable to the pain I felt through my husband’s eyes. He also never once complained nor was angry.
There is peace in the acceptance of your situation in life.