Sheni describes two occasions where she had a disagreement with the doctors.
But one of the things that they did was they had, they had [an associate doctor]. He was working the nightshift one night and he suggested that they should just take out the shunt to help get rid of the infection. And we thought that was a really, really bad idea because if he had a shunt, he must need a shunt. And this doctor said “Well, that’s not necessarily true. Maybe he doesn’t need it anymore, and this might hasten the recovery from the meningitis.” So, we reluctantly said “Okay. Well, as long as you’re going to watch him really carefully then okay, fine. But if he starts looking like he needs the shunt put back in, you need to promise us that you’re going to act quickly on that.” So he assured us that he would, and that was on, I believe it was on a Friday, and by that weekend he, my husband, was acting fine when we visited him at the hospital. And then, I went home Sunday night thinking that everything was okay. But then, I got a call at around 7:30 in the morning from [his neurosurgeon] saying that he was #4 on the coma scale; he had gone into a coma and they needed to insert a temporary shunt immediately at his bedside in order to save his life.
In fall of 2000… or sorry the spring of 2010, not long after he finished chemo, he started having lot of weird things started happening. He started having problems with his—the tumour is on the right-hand side of his brain—had a lot of problems with his left hand and arm and his face; they would start going numb on him. And we had a number of situations where we had to take him to the hospital, and because of this, knowing that the tumour is on the right side and this was happening on the left side, it’s never happened before, I started thinking the tumour has grown. So, I start mentioning this to different doctors and they are like “No, no, no. You’re over-reacting,” right.
More from: Sheni
- Trying to find the right balance – SheniWhen her husband was in the hospital, Sheni did all she could to help her children through this period.
- Support from family and friends – SheniSheni’s family-in-law did not offer any help. In fact, they made it harder for her.
- Social impact and lifestyle changes – SheniSheni notices that she has a lot less tolerance for other people’s minor problems and this has affected her friendships.
- Legal issues – SheniSheni’s power of attorney was revoked after her sister-in-law contacted the Public Guardian. Sheni thinks it is important to read up on the rules of power of attorney to avoid any issues.
- Interaction with professionals – SheniSheni describes two occasions where she had a disagreement with the doctors.
- Financial impact – SheniSheni and her husband had always been self-employed. In just a few weeks, they lost all their income.
- Impact on professional life and career 2 – SheniWhen her son started radiation therapy for his brain tumour, Sheni had to take time off work. Unfortunately, her manager was not very understanding.
- Impact on professional life and career – SheniIt is difficult to work while caring for someone at home. Sheni dealt with situations that she felt most people never have to deal with.
- Home care and live-in caregivers – SheniSheni found the live-in caregiver very helpful, especially since she could check-in with him at home during the day.
- Health system issues – SheniFor Sheni, it was impossible to work and find care for her husband.