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Our new normal 
Créé par A&A’sMum
02 juin 2021, 2 h 41

Hello Folks, In December my husband (49)was diagnosed with stage 4 rectal cancer that had already spread to his lungs and liver. At that time he was given 3-6 months because they couldn’t start Chemo due to a very stubborn infection. Finally in mid January he was able to start treatments and does so every 2weeks. We are 10 treatments in and he seems to be coping well. it is so hard being a caregiver to someone who believes chemo is the only treatment that matters (also diabetic) and he constantly no matter how easy I make it for him to take the medication he just “forgets”. He isn’t honest with his Dr on the phone call follow ups and I wonder if it will affect his outcome.

So frustrating! He has so far had 1 set of scans after 6 treatments and the cancer seems to be responding well to the chemo to the point where the oncologist has bumped from 3-6 months to 2 years. (YAY) it’s so scary not knowing from scan to scan what is happening inside but I guess we roll with the punches and take each day as it comes. 

Thanks for just just letting me get this out there ❤️ 
 
02 juin 2021, 23 h 10

Hi A&A'smum,
A dear friend told me that no matter how well she felt - when it came time for CT scan or tests of any kind - she would not be able to relax until she had been given the results. 

I was just thinking that when I 'say' things it makes them real. I wonder if that makes it hard for your husband to be up front when talking with the doctor. It's hard for you too of course - can you talk to him about how you feel?  What have you found helpful to put one foot in front of the other every day?

Covid has interrupted and disrupted so much of our lives - visits that you might usually have wiht the doctor and your husband are often no longer an option - a time when you could meet altogether. Do you have other family who help out? 

Warmly,
Katherine
 
Réponse de eKIM
02 juin 2021, 23 h 49

Hi A&A'smum,

Your husband is blessed to have a wife who cares for him so much - in the emotional sense and in the physical sense.

I know how comforted I am to have my wife drive me back and forth from the hospital when I had my health challenges.

I call her my EarthAngel.  If you allow for a fluid definition, I believe that all caregivers are EarthAngels - as you are.

Please remember to take time for self-care.  It is so important to make sure that you are doing well.

I hope that you find us here, to be of help to you, if only by listening and caring.

I wish the best for you and yours.

eKim
 
Réponse de A&A’sMum
03 juin 2021, 0 h 01

Katherine,

Today we actually had a phone call follow up with the Oncologist and I also picked up the phone and did voice my concerns about some blood and discharge from his wounds on his buttocks from a drainage surgery in January that had previously healed. The Doctor thanked me for bringing this forward and asked my husband to head upstairs away for our children so I could inspect his wounds. Sure enough they have re-opened and has some puss and blood leakage... the Dr has requested to see him in person for his next follow up which will be early July after his next set of scans!

my husband was so upset with me, I told him this is his bus, whatever road he takes will determine his end point and that if he isn’t honest with his dr’s now they won’t be able to do much when it’s too late.

As for family to help no, not at this point due to Covid we aren’t allowed anyone not in our household in our homes.

i am taking time for me and making sure we all eat well and sleep well. I’m still working my full time job as well as online schooling with our 2 younger kids. It’s busy but we make it work :)  
 
Réponse de eKIM
03 juin 2021, 15 h 29

Hello A&A’SMUM

I don't really know exactly what to say to you because I have never been in your situation.

Have you found sources to help you with what you need?

I just want you to know that you are not just "speaking into the wind", but there are people who will listen to you, and send you thoughts of peace and love, as I do now.

- eKim

If you want to just "get it off your chest", we are here to listen.

 
 
Réponse de Saara
05 juin 2021, 2 h 52

Hello, A&A'SMUM.  My goodness, you are one busy woman, working, caregiving, raising and schooling your children.  I am so glad to hear you say that you are taking care of yourself, eating well and sleeping well.  Your story is very similar to ours; me working full time and raising a grandchild, he with Stage 4 colorectal cancer (mets to liver and bladder) diabetes and a reluctance to be honest with the doctor's.  

That inability to be honest is, I think, a way to avoid a hard reality, but it is not at all helpful.  In the end, I lived a kind of double life - I had to accept that denial was, for him, a kind of coping mechanism, although it made me crazy, and I had to separate out my own feelings and try to remain, how to phrase this, supportive of his delusions.  In my mind, there is optimism and determination, and then there is willful blindness.  It is so hard.  That optimism and determination got him through six hard years, but it was a hard journey.  

Despite COVID, can you not have care aides come in to assist you with care?  There will come a time when that will be critical if he is to remain at home.  I had to fight hard for help, but was finally able to arrange it; without that help, and my youngest son returning home to help me with care, I could not have continued to work.  In our case, my husband chose to die at home, and I could not have made it through those last years without the help of care aides and at the end, nurses.  

If you can, have those honest conversations with your husband - is he forgetting or does he not actually want to undergo the treatments?  Memory can absolutely be affected, so that may be all it is; it is likely he will need a lot more support with that as time goes on, but if he has doubts, they need to be discussed.  Also, and he may not want to deal with it, absolutely a will needs to be in place, accounts made joint, property in joint tenancy, anything that will make it easier later.  I am so sorry that you have this to deal with; it must be so hard for your children - it has been almost a year since my husband died and I am exhausted still.

If there is anything I can do to help, any questions I can answer, please reach out.  Thinking of you, your husband and children.

Saara
 
Réponse de A&A’sMum
05 juin 2021, 3 h 25

Thank you all for responding.

SAARA, when he came home from the hospital late December we did have a home care nurse for about 10-12 weeks. Then the agency deemed him well enough that he could go to a clinic for his wound care/Picc line dressing flush and bandage change. He really has a will to live for our children and as they are just 10 and 12. I let him live with his beliefs that he is healthy and strong but step in when I know he is struggling. It’s just tough knowing that when he isn’t telling the Dr the full truth they can’t help him or adjust his medications. But I think I mentioned in a post above we have a new set of CTScans for the end of the month and hope to continue to see improvements with the tumours shrinking.

one da, one scan at a time ❤️ 
 
Réponse de eKIM
05 juin 2021, 17 h 38

Hello, A&A'SMUM

Reading your posts, I started to wonder about the "Men are from Mars, Women are from Venus" thing. 

It is a very big generalization and stereotype to think that men and women think differently. 

I suppose the "exceptions to the rule" explain why people say that that theory is too simplistic. 

I am a male and I have heart disease (chronic or terminal?) I wonder if it is just semantics. 

I just know that I have a viewpoint that is much different from my wife's. And she has to deal with my "IdiotSynchronicities" (idiosyncrasies).

Sharing the details might put too much emphasis on me, whereas the emphasis should be on comforting you, A&A'SMUM.

But I just want you to know that this PerfectStranger cares about you and wishes you thoughts of peace and comfort.

Keep on writing.  We'll keep on listening.

-eKim
 
Réponse de Saara
05 juin 2021, 17 h 51

That will to live and your loving care will go far.  Here's hoping for good results!


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