posted by Homebird
05 December 2020
Caring through another round of aggressive chemo.
Last reply: 1 month ago
Sorry in advance for the long post. My mother was diagnosed with terminal mesothelioma around this time last year. The average life expectancy for her cancer is thought to be 6 months to a year. I had just graduated college and was 2 weeks into my new career in a different city when we found out. With 6 rounds of chemo coming up to try and contain the cancer I had to move back home to look after her as she couldn’t live alone. My employer was incredibly understanding and agreed to let me work from home temporarily. My elder brothers live abroad so it’s just me here and no other family to rely on. The chemo made her incredibly ill with her constantly needing to be admitted to hospital which is always a battle to get her there. She wouldn’t eat for weeks on end, couldn’t stand on her own, dress herself anything. I was sleeping on her floor for weeks to make sure she was still breathing, it was quite honestly traumatic. This was pre covid and my brothers flew home a handful of times so I got a day to myself once every month or two. I barely held onto my job with how much work I had to keep taking off. I’m a finance trainee so my hours can range up to 60 hours a week including weekends during busy periods and I’m also meant to be sitting exams. Looking back I’m not sure how I kept it together. The chemo was eventually dialled down and the harsh drug removed as she couldn’t handle it. Then covid hit and in a bid to keep her safe we have been completely cocooned since March. I don’t leave my house except for a walk when she’s ok enough to be left alone and I don’t see anyone at all. We are completely alone all day everyday. 6 months post chemo she’s been doing relatively ok and the struggle she went through was worth it. But we’ve now found out the cancer has entirely collapsed one of her lungs. In order to slow its spread, the decision has been made to try an even more aggressive 6 rounds of chemo again. As much as I want to be there for my mum and I don’t want her to die I don’t know if I can manage it all again on my own. I honestly don’t believe she will be able to handle the side effects this time around and will be left with no quality of life for her final months. She won’t have a carer come in to help and because I was only straight out of college I’m not entitled to sick pay if I have to take time off work again. It looks like I’m going to have to give it up altogether and apply for carers which I don’t think we can financially survive on at present and job is the only thing I have left of a normal life. I love my mum she’s the only family I’ve known and the idea of losing her has been very hard to accept so I feel an incredible amount of guilt that I don’t want to do this round of aggressive chemo again. Any opinions I had on this have been immediately shut down by the team as they assured me she would be looked after (she wasn’t at all the last time, in fact various complaints were filed over neglect issues in the hospital). I can’t describe in words how stressful and isolated the last year has been. She barely survived chemo last time and that was before Covid meant trips to the hospital were so much harder. I’m terrified if she goes back in she won’t come back out and could die alone in the hospital like so many have since the virus started. Chemos starting next week and I’m just not ready for it. I don’t know how other people are coping with it all during these times but I applaud anyone who is managing it. I’ve been running on adrenaline the last 12 months but I’ve run out and don’t know how to keep pushing through. If anyone else has had similar experiences or methods of coping as a carer I’d love to hear them.