Caregiver for newly diagnosed wife

[JCfl]

Hi everyone,

My wife was just diagnosed Friday with stage 2 ovarian cancer during surgery to debulk her tumor with a total hysterectomy. Needless to say, our world is now upside down. Her symptoms first began earlier this year and was misdiagnosed ranging from tendonisits to cellulitis culminating in bilateral dvt’s and pe’s. It’s been a rough couple of months leading up to yesterday’s surgery.

My questions for you ladies are: what did you find helpful and not helpful from your caregivers during this journey? Where can I find resources for day to day stuff like house cleaning and meal preps on the days I have to be at work.

I’m a second career nurse, so the medical stuff isn’t completely foreign to me. My first career is as a psychotherapist, so the mental end of this also isn’t foreign to me. But the cancer end of all this is overwhelming. I have some experience with end stage/hospice from past friends who went through cancer, but I was never this fully involved. I welcome any and all input.

Thanks in advance and wish good tidings on your own journeys.

REPLY

[Nancy222]

Hello JCfl,

I'm sorry to read about your wife's diagnosis. You sound like you've got most of the support down pat. But since you asked, and since my husband should get the husband of the year award for how much he's helped me, I'll give you my side of things.

Lately, the best thing he did was get support for himself as caregiver. I was concerned about him, especially as he does so much for his elderly parents. So, he went to his GP, got his blood pressure sorted out by losing weight, reconnected with friends (so important!), talked about what was going on in our lives instead of keeping it to himself, and sought counselling (and I never ask what he talks about at counselling). He's now got the shine back in his eyes and that was the best thing he could do for me. And he's laughing again which eases my soul.

He's always there for the important appointments, lets me take the lead, jumps in when he feels the need, and is generally so supportive. He now does most of the laundry and vacuuming, and I just let him do things his own way.

As for meals, we likely do more takeout than we should. Sometimes he brings home a BBQ chicken and we build a meal around that. Other times he brings home Thai or Middle Eastern food. My appetite isn't that strong at times, and I feel better when I know he's getting something good to eat when I just want soup.

We bought a lot of plant based frozen food and that helps too.

He doesn't overly fuss, and listens to my cues about when I need some down time. We try to keep a normal life so that we're living with cancer but it's not what defines us.

With respect to cleaning, if you can hire someone that's great. If not, just learn to live with the home not being quite what it used to be.

Finally, most of us do the best we can. That's all we can ask of our spouse.

Oh, and one more thing. We truly try our hardest to live day to day. We went through an anticipatory grieving stage which probably was cathartic but it was hard on us. Thank goodness that's behind us.

The thing for you to remember is that you just don't know what's ahead of you. One step at a time.

Good luck!

XXOO

[Lobster2]

Take a look at the American Cancer Society for things you can get for support during cancer treatment. They have a great program for makeup during chemo and you walk away with about $500 of free stuff. You can also get a free wig from them. This company offers 5 months of house cleaning for women battling cancer: cleaningforareason.org/. I used them first time I was diagnosed. I just tipped the girls who came to clean but that wasn't required.

[JCfl in reply to Lobster2]

Thanks for that link, it will be enormously helpful. I’ve looked at all the sites I can find and while helpful, it seems very general.

[Catmets]

I was diagnosed in June of 2013 stage 3c. After my first remission it Metz to my liver and other places. Ive been through the “big” operation, I lost my hair 2x, I’ve been on 2 clinical trials, I just had 2 things they almost never do for ovarian cancer, but I would keep them in mind. I had a small tumor cryoblasted and I just had stereotactic radiation to my liver 5 super high dose radiation directly to the spot. They have only been doing it with success for 5 years. I’m going back on avastin with another drug in about a month.

During the 5 years, I’ve been to Sedona (for healing vibes) and a health spa 2x in Hilton Head. I’ve been to Disney, Mexico, Myrtle Beach and Miami with my family.

I’m telling this to you because what stood out to me was that you know about hospice. Put that out of you mind. Your wife is going to live a long time. There are going to be ups and downs. It’s a rollercoaster. As far as a caregiver, just do whatever she wants. It’s just easier. I just finished the radiation and have been in bed for a week with naseaus and fevers. Andmy husband is cooking smelly foods. I’m so angry about it.

Cancer is 50% physical and 50% mental. As a patient I have a lot of anxiety. And I don’t know when it’s going to happen but I do take it out on my husband sometimes. He doesn’t listen. So I would say listen.

Also, you need to help research at least once a week, check for new treatments, clinical trials, don’t be afraid to move hospitals. Ask questions. Ask until it makes sense to you. Find somewhere that will test the tumor from the surgery. It might have something that you can “keep in your back pocket” like a new drug or clinical trial.

Also, don’t worry. Your going to have sex again and listen to your gut.

[SBlau Partner]

SHARE has a Caregiver Support Helpline where you can speak one-on-one with a caregiver peer trained to provide support and information to those caring for a loved one with ovarian cancer.

Call 1-844-ASK-SHARE and ask to speak to an ovarian cancer caregiver peer.

Best wishes to you and your wife.

[Figs2020]

I am a Stage 2 cancer survivor; How is your wife now? Has she completed chemo? What is her CA 125 number? Does she have any digestive issues post-surgery?