My husband went through four brain tumor surgeries. Here’s the 10 things I learned
October 31, 2017 (LifeSiteNews) — On March 7, my husband was diagnosed with a brain tumor. Technically benign, the tumor had blocked the ordinary circulation of fluid in Mark’s brain, which was in danger of collapsing. But the tumor had grown in such sensitive area, and was so close to a major artery, the surgeons didn’t want to touch it.
Seven months and four operations later, my husband had lost a third of his bodyweight, couldn’t read, and could barely walk. He was deemed well enough to be transferred to a rehab facility, but he soon slid into drowsiness and delirium. After getting up in the middle of the night, Mark fell and hit his head. He was taken to Emergency in another hospital; a scan showed that his tumour had grown.
Therefore, on October 11, my husband underwent a fifth surgery, the one the surgeons so badly hadn’t wanted to do. He survived, and the tumor is gone. Mark’s still emaciated, but his appetite has come back. He’s at home scarfing chocolate biscuits as I write.
Spouses don’t come with instruction manuals, and I had to learn on the go how best to help mine get the medical attention he needed. The process was enormously frightening, exacerbated by living in what is, to me, a foreign country. I felt so alone, powerless and inadequate, I feared I’d let him down. So here, in the hope that it might help another spouse in the same situation, is what I have learned.
1. I’m my husband’s primary caregiver.
To make sure my husband got adequate medical care, I had to go with him to every doctor’s appointment. I had to make or remember the appointments. Sometimes I had to wash and dress him. I had to ask questions. I had to learn to watch for symptoms. I had to visit him daily in the hospital du jour. I had to call the emergency hotline. I had to convince a snappish GP to send another GP to see my husband at home after a bad fall. I had to beg my husband to eat and to take exercise, and I had to learn that this was useless. I had to get a second opinion. I had to be foresighted, persistent and tough. I had to do all this because I am his wife, and there was no one else.
2. Surgeons and nurses make mistakes. And so do I.
When your husband has had a life-saving brain operation, the last thing you want to face is the possibility he might need another one. Between Operation 1 and Operation 2, I couldn’t understand why my husband kept losing his balance. The local GP couldn’t understand it either. Nobody could understand it until someone finally did a scan and discovered Operation 1 had been a failure. My husband had to have Operation 2 the very next day.
Operation 3 was likewise delayed, apparently because a surgeon was reluctant to tinker with the good job he thought he had done during Operation 2. Operation 4 followed my request — initially refused — that my husband have another scan. (The requested scan revealed an aneurysm.) Over the past seven months, I have learned to hope for the best, plan for the worst, and question any opinion of a doctor or nurse that seems wrong to me.
3. Friends and family wanted to help, and all I had to do was tell them what we needed.
Ultimately, my husband needed someone to remove that tumor. Me, I needed not to feel so alone. I asked friends and family over social media not only for prayers but for cards and children’s drawings to cheer us up. We were inundated with cards, drawings and gifts. Someone sent two bags of Tim Horton’s coffee from my native Canada. Even if there was nothing in the post that day, every time I made a cup of coffee, I remembered that there were dozens of people thinking about us and praying.
4. When someone offers help, take it.
English-speaking countries suffer from the cult of individualism, and so it can be difficult for us anglophones to accept unsolicited help. At first, I had to make myself say “yes” when church friends offered assistance; later, it became easy. As a result, people drove us or me to the hospital, took away household trash, and accompanied me on walking pilgrimages as I prayed for Mark’s healing.
5. Crazy happens.
One of the most hurtful events in the past seven months was being told by a friend that I wasn’t doing a good enough job, that I was “culpably negligent,” that the National Health Service wanted to euthanize my husband, and the only responsible action was to call a helicopter and have him flown across the Atlantic to the USA and the Mayo Clinic.
Although it was fundamentally unhelpful, I understand now that that, too, was meant as help.
6. Nurses should acknowledge visitors.
It’s great that nurses put patients first, and we worked with many great nurses. I ask only that they acknowledge the existence of the patients’ co-sufferers, their spouses. Every time a nurse brushed past me without a greeting, I felt like a burden. Every time a nurse asked me if I wanted a tea or coffee, I felt blessed. I’m not saying the cash-strapped NHS owes all visitors a cuppa. I’m just saying that after weeks of daily visits, a spouse might be considered a kind of colleague. (See 1.)
7. I had to consider my health, too.
A few kindly people followed up questions about Mark’s health with the surprising yet welcome “ — and how are YOU?” Although I was always worried, I was always fine. I ate enough, I slept enough, I went to class, I went to church. I took good care of my physical and mental health because I knew that if I got sick, I wouldn’t be able to visit Mark in the hospital.
8. My bosses are great.
Sometimes spouses of long-term sick people lose or quit their jobs. They spend so much time with the patient that they can’t do the work their jobs require. I didn’t lose or quit my job because LifeSiteNews truly is a family-first organization.
9. I couldn’t help anyone else right then.
I regret very much the promises that I made that I couldn’t keep. When I was asked to sign up to bring a casserole to a new mum, I promised an eggplant parmigiana. The eggplant parmigiana never happened. Naturally, the new mum — who brought Mark a casserole when I was traveling for work and she was nine months’ pregnant — understood.
10. The power of prayer.
On the one hand, my husband’s surgeon is probably very talented. On the other hand, he was surprised by Mark’s very rapid recovery after Operation 5. Doctors haven’t declared it a miracle, but I am sure that Mark’s recovery — and my total lack of a nervous breakdown — is a gift from God, solicited by the many prayers and spiritual gifts offered by countless friends and readers. So if you were one of the many people who prayed for us, I thank you from the bottom of my heart.