← Return to Talking Frankly about Living with Advanced Cancer

Discussion

Talking Frankly about Living with Advanced Cancer

Cancer | Last Active: Jun 18, 2023 | Replies (508)

Comment receiving replies
@ventibug

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

Jump to this post


Replies to "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..."

Hello @ventibug I am pleased to e-meet you here on Mayo Connect. I am Scott and I am also sad to read of your health issues.

I am not any type of medical professional, but I do know dealing with the unknown and the waiting can often be a significant challenge. I wish I knew of a potion to take to help with this, but all I can say is when my wife was at her most anxious I would try and get her to talk about it out loud and just keep talking and talking and talking. It was the only way I could see her gain some calmness at those incredibly stressful times.

As to holidays — oh boy! Holidays were always stressful for us as my wife recalled how much she used to do for them, and enjoy them, but no longer could. The first thing I did was talk to our adult children and set a whole new and lower set of expectations for holidays. I took to splitting up the chores between all attending family members, young and old alike, ahead of time. We also installed a ‘one gift’ rule and focused instead on just being together. My wife is gone now and we still do this and love it.

Finances are slways a tough issue with medical bills, specialists not covered, copays, and frequent need to ask the insurance company to reconsider their decisions. Plus being s time of less income. All very time consuming. In our case I was fired due to my wife’s needs so our finances were somewhat different and all I can say is I had to tell our children I spent their inheritance on their mom’s medical care and also sold a lot of unneeded items on ebay 🙂

I am sure others have additional suggestions, hints, and tips.

Strength, courage, and peace.

Hello @ventibug, Welcome to Mayo Clinic Connect. New....but not clueless. 🙂 I'm happy you found this site and would like to encourage you to start a new thread in the cancer group to discuss anxiety while you wait- One of the things I hear patients talk about at Mayo is the anxiety of waiting for tests, results, 3 month, 6 month and 1 year follow up appointments. I think it's so common and to read how others cope with the anxiety will be helpful to all.

I loved the ideas that Scott gave you for planning Christmas. You could also let amazon help you- no running around and it's delivered right to your door. I also wanted to share with you that this last year we lost my Mother-in-law to cancer and she was the ultimate shopper for Christmas- she loved the season and watching us kids open gifts. We knew going into Christmas that it was going to be our last one with her and I can honestly say that all that mattered that night was for us to savor every moment with her and concentrate on all of us being together- gifts weren't even a thought. Put one of the kids in charge of Christmas dinner this year. I found myself planning Christmas dinner this last year for the first time and I wanted to make sure it was extra special and I'll never forget it. It was so special.

As far as following threads, on the groups page just click follow. Notifications will be sent to you via email when someone posts or replies in the group you follow. I find it easier to "view and reply" from the email notification. Please let me know if you need help navigating. 🙂

Great ideas, thank you. I cannot imagine coping with the death of your wife; my sympathy for your loss. My husband has been so great about taking care of me. I literally could not be doing this without him! He just changed another dressing. And of course i would do the same for him. Still hard to be on receiving end all the time. Hope you take care of yourself, too, but of course you do. You are still here and still reaching out. Ventibug

Thanks @ventibug I appreciate your kind words. My journey though grief is almost as hard, and in some aspects harder, than my years as caregiver. The most valuable lesson I have learned is the oft quoted 'stages of grief' are not at all what the majority of individual experience as they live in grief. But that is for another discussion another time.

I know my wife felt as you did...not liking to be the one on the receiving end all the time. She did finally come to accept it as an inevitability, but it took a few years.

Strength, courage, and peace!

@jamienolson oh I have plenty of anxiety to share but, yes, I need help navigating. I dont know how to start a thread. Where is the "start a thread" button? We all know life is not fair, but my Iphone croaked the week I started chemo. I was so mad that Apple wouldnt do anything to help me with a 23 m/o Iphone on recall that i refused to buy another one! Now Im trying to learn a new Samsung phone! Joke is on me!

You are a step ahead of me I have gone between a Samsung and a LG I used to think I knew a bit about navigating computers... that was until it came to phones !!! LOL I was ok at first but my latest phone a simple smartphone seems to be in a foreign language. My husband used to say he had a stupid phone hahaha but not anymore he is leaps and bounds ahead of me and that is just not right LOL
but all kidding aside our phone and the computer can become a life line some times those close to us just don't get it and we need someone who has been there...done that and that is what we get here on connect. It comes from a lot of different directions, you just need to find the one you connect with and go from there.

@ventibug, I'm glad you found the Start a Discussion button, which is found on the Group page, for example the Cancer group https://connect.mayoclinic.org/group/cancer/.

If you have further questions, here are some helpful tips on how to use Connect https://connect.mayoclinic.org/get-started-on-connect/