Dealing with the financial toll of treatment and recovery period of cancer

[u/ocetwrs]

Hi, I just got diagnosed with ovarian cancer at 42. I just had my debulking surgery and am awaiting the staging results. However I've been told by my oncologist I will likely need 6 rounds of carbo taxol.

My question is, how do people deal with the financial toll of the treatment and recovery period? I've been told to expect to go on leave from work for 6-8 months for the chemo. However I will only be covered for 2 months of paid medical leave from my company, and the rest will be unpaid leave. Right now all of my paycheck goes to fixed expenses, and i don't have any spare to cover the unpaid period..

[u/shredbetty007]

Hi! Sorry you’re now a member of the worst club to be apart of. But there’s some cool members. I’m 36 and was diagnosed in 2022. I had debulking surgery in April and just had my 5th of 6 rounds of carbo taxol. I took off work (I’m self employed) and got some support from a state program. I’m struggling with similar challenges financially. I wish I had some resources to share. I’m here to say, solidarity! This is hard and sucky and I’m not sure where you are but it’s hard to exist in a system where living with cancer is often a financial crisis.

[u/Ok-meow → u/shredbetty007]

Worst club! Isn’t that the truth. In the US, if you are stage 3 or higher, you can get ssdi. I got approved 3 weeks. They don’t mess around with cancer, they know ovarian cancer loves to come back, simple approval. I had both ssdi and state disabled for a bit. Nice to worry about money.

[u/shredbetty007 → u/Ok-meow]

That’s good to know! I was thinking about applying for ssdi! My stage is 1a but it’s recurred and metastasized. I was told that they don’t change the stage even when that happens. But that seems to be an important criteria to be eligible.

[u/Regular-Ad-9303]

I'm fortunate to have long term disability through my employer.

[u/BetterNowThks]

hi, sorry you're here. I went on leave for eight weeks. So the surgery and the first couple of chemo sessions to see how I did. Also, I'll let you know that I had six rounds of carboplatin and Taxol also. I was 59 and was able handle it since I work from home. So it's going to depend on several things, including what kind of work you do, how supportive your company is, and how well you can manage yourself between chemo sessions. After my eight week, leave of absence was over. I took off for my chemo days (one time a month on a Thursday) and felt fine to work on Friday, and then my rough days were on the weekend. also note that I'm in California and I was able to take leave of absence from work and also file for short-term disability which I hope you are able to do. Because that helps fill in the blanks so to speak.

[u/ocetwrs → u/BetterNowThks]

Thanks, good tip to do the carbo taxol on Thursdays. How many hours does the infusion take?

[u/BetterNowThks → u/ocetwrs]

I think I allowed six hours, but sometimes we were done in five. The first day I felt so good after chemo that husband took me out for brunch afterward. I had a huge meal. Here's a lesson for you, that Thursday and Friday are good days not to eat too much at once. Small amounts across the day. This is because the pain medications you're on are constipating. and you dont need that making you more uncomfy.

[u/No_Art9513]

I'm so sorry to hear about your diagnosis. It's enough of a shock and stress without worrying about money on top of it. I know this because I've been there. I'm freelance and get zero sick pay.

This is what I did:
I used tax money I'd saved up to pay HMRC to live on (if you're not in the UK, this is income taxes)
Switched via the Mortgage Charter to interest only mortgage payments which took minutes, and didn't have to speak to anybody on the phone
Got a grant from Macmillan (?£300?)
Claimed Universal Credit - or was it Job Seekers Allowance? I did not have to keep reporting what I was doing to look for work. They accepted my situation.
Asked my utililties company to reduce my monthly payments (they did)
Sold lots of clothes on Vinted
Did the usual stripping back on anything that wasn't essential
Made a few handmade cards and sold them online- a little sideline I have - when I felt well enough
Accepted offers of food from friends and family

My period of not working was Nov 2023 to July 2024. I returned to work 2 weeks after my Carbo/Taxol treatment was over, which I would not advise. Those first 6 months or so were very challenging. I am still £3k in debt to HMRC.
Sorry I can't paint a rosy picture but there are things you can do! Don't be afraid to ask for help

There were things I didn't get around to doing - eg getting council tax reduction...

E

[u/ocetwrs → u/No_Art9513]

Thanks, this is all super helpful. I'll look into what I can do to reduce my expenses / sell off things I don't need either. Could I ask, how many rounds of carbo taxol did you do, that took 9 months from Nov 2023 to Jul 2024?

[u/No_Art9513 → u/ocetwrs]

I'm glad it may help. Apologies, dates wrong! Just checked. My op was end of Nov and chemo started end of Jan (Christmas/New Year delays everything in UK so 8 weeks after my op) and finished end of May. 6 x Carbo/Taxol every 3 weeks, but one session got delayed by a couple of weeks as I was unwell with unrelated stuff. That can happen so you can't guarantee it'll be over in the 15 week period unfortunately.
What I struggled with was the exhaustion after it finished. I read one report that it often takes 2 months for every chemo session to recover. I started to feel better 10 months after it finished so he may have had a point there. But everybody is different!

[u/drazil17]

I had 6 weeks off after minimally invasive surgery, which also included the first chemo session. I had my chemo appointments on Thursday because I felt ok to work the day after chemo and the weekend covered the worst 2 days. I was fortunate in that I was able to work from home as needed and had my manager's ok to take an hour or two to nap if needed. It was not easy, but I could feel miserable doing nothing or I could feel miserable at work. The only way through chemo hell is through.

I had a laparoscopic appendectomy earlier (which led to my diagnosis) and I was working from home the next day. The day after that was the weekend thank goodness because there was so much pain at bedtime from the residual carbon dioxide in my abdomen from the surgery that even opioid painkillers did not help.

[u/sphinxsley]

Be sure to work with the hospital to see if they have any programs that might help, and/or if they'll knock any of your bill down. You may need to provide personal financial info, but it's worth it.

[u/thorvindottir]

I have short term disability coverage which I pay for but was never off of work for long enough to draw on it. Except for a few days, I was able to work thru chemo by taking the week of chemo tx off as FMLA and working for two weeks until the next round. It was tough financially but we’re struggling thru the catch up time. Make sure to reach out to any lenders. They may have programs to help you.

[u/AdJealous3293]

I moved in with family during treatment.