The well is just about empty...

KDCWV
New Contributor

The well is just about empty...

Cancer has been in a part of my and my husband's world since 2009.  In 2012-13, I was in a clinical trial at the NIH in Bethesda, MD. for an early form of Myeloma.  Although I've been told this disease is never cured, I have had no sign of the disease since 2013.  I am monitored every 3 months through blood work and annual scans/bone marrow biopsy.  In 2018 my husband developed a high grade form of sarcoma.  He had extensive surgery of his lower leg at the Cleveland Clinic but 6 months later the cancer had spread to his lungs.  His cancer is unrelenting, and now is in the mediastinum, pancreas and chest wall.  He has fought and continues to fight hard, having had many radiation treatments, chemo, immunotherapy and is now on a medication called Votrient.  I stopped work this past May and retired.  I loved working but could see that I have limited time left with my husband.  During my treatment, I continued to work, flew to Bethesda weekly for 8 months and kept up the house.  During this time, my husband barely acknowledged my plight.  His response may have been my fault as I maintained that all was well. He never bothered to learn about my condition and actually told me he didn't know why I had to leave our rural area for treatment.  Conversely, when he was diagnosed, all my time and energy went in to finding him the best care and making sure he had the best chance of survival.  He has become quite ill now.  He coughs loudly, non-stop.  It wears him out and stresses me to no end to hear it, as I can't make it better.   (His doctor has tried everything.  He is scheduled for a thoracentesis to drain a pleural effusion next week).   I wrote all this to say... I am tired.  I am tired of cancer, mine and his.  I am a little angry that my whole life has been upended by his cancer, while my cancer didn't seem to matter to him.  I feel guilty for even having these thoughts.  Fear of Covid has significantly narrowed my social support.  He has always been somewhat of an introvert, I have always been his primary source of support.   Sorry so long...just looking to vent.

5 REPLIES 5
Wegotthis
Frequent Contributor

Re: The well is just about empty...

KD

I'm so sorry how things are going for you and your husband. 

You definitely have been though a lot and still dealing with a lot. 

It brakes my heart to hear that your husband wasn't very supportive. 

Sounds like you need a break from cancer and your husband. Is there anyone that you could ask to stay with him so that you can have a day to yourself. 

My wife hasn't spent much time researching my cancer. It's not that she doesn't care. She's happier knowing less about it. She knows that is a chance that treatment isn't going to cure me or that I could develop a second cancer later. Honesty I only asked her to do one thing for me. I asked her not to cry in front of me. I'm very fortunate that she is welling to do anything for me. 

Have you tried seeing it there is a local cancer support group. A lot of support groups are meeting online now days. 

Do you mind me asking what did you do before you retired. 

((((((((Hug))))))

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KDCWV
New Contributor

Re: The well is just about empty...

Hello "We got this", 

 

Thank you for your reply.  In re-reading my message, i hope i did not come across as uncaring.  My husband's cancer has been much more difficult to treat and less responsive than mine was.  I am glad he didn't ask me not to cry in front of him...i've only done that once and was because he started crying first.  Probably only the second time i've ever seen him cry.    

 

I am a retired family nurse practitioner.  It stands to reason that i would over research my husband's cancer as it gives me some sort of feeling in control.  I don't share with him all that i read and know.   I do try to help him all that I can and I want to do so.  A support group is a good idea, online would be best.  I do try to get out twice a week to play Pickleball and visit my aged parents.  

 

Thanks again for your support.  I hope your treatment is tolerable and that you are having a favorable response to it.

 

KDC

LindaG
Frequent Contributor

Re: The well is just about empty...

Hi KD, so sorry about the health of you and your husband.  Good that your cancer is under control. It all sounds very overwhelming for you and that’s completely understandable. You sound like such a supportive wife and you are doing the best you can. We are all so different in our experiences but we all support each other on this forum and it’s ok to let your feelings out here. I know when I was looking after my mum, I would get so frustrated that everyone day there was a new problem and then I would feel guilty that I was frustrated!!! She has gone now and I just want her back 😥. I’ve just got over non Hodgkin’s lymphoma, thank God, and my husband was so wonderful and caring which I am so grateful for. Hope you have loved ones around you to give you the support you need while you care for your husband. 💕💕🙏 Linda G 

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KDCWV
New Contributor

Re: The well is just about empty...

Hi Linda,

 

Thank you for your thoughtful message.  Fantastic news that you beat Non-Hodgkins Lymphoma.  What a journey you have been on. I am sorry for the loss of your mum.  I appreciate that you are on this forum supporting myself and others.   I will continue to try to do my best for my husband. I'll admit that I have days when my best is pretty pitiful and other times when I feel pretty good about my efforts.   I do have people in my life that offer support to me.  I've never been one to accept support readily but i'm working on that.   I am learning that guilt and anger are emotions that are normal given my current circumstances.  That doesn't mean that my husband and I don't have quiet, happy moments, reminiscing about past joys or planning for future ones that are within reach.      Best to you and yours,  KDC

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Wegotthis
Frequent Contributor

Re: The well is just about empty...

KD

 

Thanks for your reply to my questions. 

You have my respect for have been a nurse. I have a few nurses in my family but I have meet many in the last few months. One nurse went through cancer and lost her husband during her treatment. I meet her while waiting to get my port put in. She was amazing. I asked how she got through through the lost of her husband. She mentioned that she loved to go to the gym 

She goes to the same gym that i work for. Small world. 

I have painted many pickle ball courts over the last few years 😀

My wife and I have only been together for a little over 20 years. I guess because we raised 4 kids and have grandchildren that it feels like we been together for ever. I don't deserve her. When she gets moody I just blame it on her being a female. I'm sure it's not my fault 🤪

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