Caring through another round of aggressive chemo.
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.
Comments
Homebird, I'm new here and caring for my mum too. I can really relate to everything you've posted. I'm so sorry to hear about everything you're going through.
My Mum is very ill and not coping well with chemo. Her palliative care has not been well managed, it's a constant battle. Nausea all the time, unable to eat. I'm the only one of her family able to care for her (one brother local has a disability, another is abroad). I'm trying to hold down a full time job while juggling with her care, and it's so hard. Exhausted, finding it a struggle to cope. I feel like many of the so-called sources of help out there are hard to contact, there's very little out of hours help/advice, and I feel like I have to annoy people and keep shouting for help.
Just wanted to let you know that you really aren't alone. If you ever need a chat here, there are many of us in the same boat. It's extremely difficult for someone who hasn't been there to understand. You just can't get it if you haven't been there.
Hi Homebird,
I'm not in the same boat to offer advice, but want to know I am thinking of you in this difficult situation.
The following may not be workable for you but I wondered if you have looked at:
Have you had a proper heart to heart with your brothers about your situation and the need for their help. They may not be able to come home now, but they might be able to make your mom see sense in getting a carer in, provide financial assistance if you give up work, etc.
Can her hospital treatment be moved to another hospital nearer where you work where she can be kept as an inpatient? I realise your living arrangements may not be conducive to this, or the hospital may not have an inpatient set up for this kind of treatment.
You need help not to do this alone, my Dad looked like he might need care a couple of years ago and I was so worried not knowing how I would manage if I had to give up my life in another city and move home jobless. (He got back on his feet after a few months and is still independent thankfully.) You can't be a carer like this if your own mental health is destroyed and are in poverty, don't give up asking for help.
Ask the hospital for their social services, ask charities, and lean on your friends. There may be tough times ahead but there will be help to be had, people will rally around you!
Be kind to your self even if your thoughts make you feel less than charitable, worrying if suffering is being made worse and prolonged for a loved one is a valid consideration when you care.
I worry more about my Dad surviving my cancer than me (I'm not terminal and on a good but tough treatmemt plan). I feel it is mentally tougher on the person who can do nothing but watch while their loved one suffers.
You are not alone, even if only today my random voice from the internet can tell you I am thinking of you.
Hugs, Ari