I wasn’t planning to write this post, but I read something similar in one of the support groups and it helped me a lot at a time when I needed reassurance. So this is for anyone coping with a loved one’s illness alone.
A few weeks ago we were hit with pretty bad news leading to the immediate hospitalization of my husband. The doctors were wonderful and tried their best to explain the initial prognosis and procedures without alarming us. But bad news is bad news. My husband’s blood report showed abnormally high white blood counts and we all know that is never good.
We were still at the hospital emergency, after spending a night at the emergency ward when the first doctor came in to tell us about the initial diagnosis. My husband was in too much pain to fully realize his words but I understood and it completely broke me. Looking back, I only remember someone handing me a box of tissues. There was nothing we could have done to avoid it. As the doctor said, it was just plain bad luck that my husband had this genetic abnormality.
Many doctors came in to see him after that and I was told that the preparation to start the treatment had already commenced. One of the first procedures was Leukapheresis. The kind doctor tried to explain it in the most casual way possible. But you can’t really sugarcoat something like – taking the blood out from the body through a pipe, filter it, and then put the blood back in. Both of us were pretty shaken just by listening to the explanation.
ICU waiting room is probably the most depressing place in the world. On the first day, I waited there for almost 5 hours to finally see my husband. But the sight of him surrounded by strange machines and cannula on both arms and neck was too much to take in. The nurses assured me that they will take care of him so I went back home. After two cycles of Leukapheresis (done on two consecutive days), 6 bags of WBC were removed from his body. The pain from the whole process and the medications had left him very weak and drowsy.
For the next two weeks, he went through numerous scans, biopsy, and blood tests. I continued working from home till afternoon, visited him in the hospital, and then came back home to play with my little one before resuming my work. It took almost a week for my husband to have a conversation with me. All that time I would stand by his bedside, watching him, trying not to touch anything.
I decided not to sit in waiting rooms anymore. I would sit in the hospital cafeteria and eat a pack of Calamari or drink hot chocolate. It made me understand why people resort to stress eating when sad. Sitting alone among patients and visitors, I needed this comfort to stop myself from breaking down again in front of strangers. And I needed the strength to collect myself and make the journey back home and attend to my child.
My work provided the necessary distraction I needed to not let bad thoughts cloud my mind. My bosses and colleagues are very understanding and I am grateful for the support I have received. It also made me realize why people drown themselves in work when going through a sudden life event.
Precautions to be taken due to Covid-19
Being sick in the times of coronavirus is extremely stressful, especially as my husband is susceptible to infection. The hospital was also a COVID-19 testing center, and every day I had to take lifts right next to the clinic, crossing a queue of people standing there to get tested. I was never without a mask outside my home. I would wash my hands thoroughly, wear gloves, and a plastic apron before entering my husband’s ward. Thankfully, the hospital provided everything right outside his room. I would sit a meter away from his bed and not touch anything in the room without spraying a good amount of hand sanitizer kept right at his bedside.
I had to take the same precautions when entering my home. Keep the coat, shoes, socks, mask, and sweater outside. Put the bags in a corner and then rush to the bathroom to clean up.
What helped me
The uncertainty of the future and the desperate need to bring back life on track was incredibly overwhelming. My husband is a former gym instructor, a fit, and a strong man. The sight of him in the hospital will forever give me nightmares. I had to take time to process my emotions instead of bottling them up, and it gave me the clarity to think and plan ahead – taking care of groceries, bills, work, in-laws, and baby.
A few of my close friends and siblings kept me company on whatsapp and phone calls whenever I felt like talking. It also made my journey from the hospital to home more bearable. Talking about my husband and his health helped me a lot to unburden the pain from my heart, even if for a little while.
Reading other people’s stories and tips online helped too.
My husband got discharged a few days back and is now recovering at home. We have a lot of follow-up appointments with GP and a specialist to discuss the future course of treatment. We both have accepted that this is going to be a lifelong treatment – not trying to think too much into the future. I believe that has given us more mental space to bring some normalcy into our lives.
I am extremely grateful for my amazing friends and siblings who kept on checking on me. Thankful that my in-laws were here to take care of my little one as I balanced between work and hospital visits.
And even more grateful to the hospital staff who did such an excellent job in taking care of my husband and reassuring me that he is in good hands. I didn’t have to worry about his food, medicines, bath, or other things like X-ray, biopsy, MRI scans, etc. The nursing staff has left me very impressed. All of this at a government hospital where I didn’t have to worry about finances as well. It took away a lot of stress from me, helping me to concentrate on my family.
Life is as unpredictable as ever and it has given me one more reason to make the best of my time with my family.
“We are stronger in the places we have been broken.” – Ernest Hemingway