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Hurting My Dearest
13 Posts

Hello all, Wishing you find some peace, some comfort and some joy today. I am new. Emotional Rollercoaster is a very good name. It’s me all over the place. I go from so frightened I can’t breath, go from weeping to the ugly crying, and paralyzing fear to refusing to even go there. As far as I can figure, what is frightening me the most is that after years of dealing with multiple AI illnesses, meds, symptoms etc….that now I already know I am just not going to do treatment period. My reason, I will not put my beloved, of 40 years through this struggle. We have had Lupus, Sjogren’s (and friends) all our lives together. I am not afraid to fight I have done it all my life, not thrilled even scared about being sick but that’s not why I wouldn’t go ahead. But to see the hurt, the pain and the helplessness in my husbands eyes, I just don’t think I can do that. It makes me scared, I am very determined. Yet I used to tell my own dear Mom and Dad through their battle, and the burden issue, “ I will take you anyway I can have you, as long as I can have you”. Can anybody relate? How on earth do I battle my own convictions? TeddyBear

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1728 Posts

@TeddyBear welcome to our community and I am sorry you find yourself here. It sounds like you have been struggling health wise over the past several years and I’m sure you’re tired. Have you seen an oncologist and know what your treatment options are? Do you understand the magnitude of your type of cancer if you choose to not have treatment? I only ask because I think it is really important information to have to make a decision. How does your husband feel about not you having any treatment? At the end of the day the decision is what you feel is best for you and your family. Whatever your decision, we will support you however we can. Sending you a virtual hug today. .

215 Posts

@TeddyBear Thank you for your frank honesty. I have been in that place throughout my treatments where I wonder why I am doing this. I also watched my dad slowly deteriorate last summer and are now seeing my mom go through the same. I know how painful that can be. My secret wish is that she goes before me as she doesn’t know I have cancer. I have found many reasons to keep going and my days do get better-until the next adjustment to yet another drug.
@WestCoastSailor posted a description of his conversation with his oncologist about the expected trajectory of his cancer. I’m hoping he can chime in here. His words were very helpful in my decision making process as it adds a new layer of information we gather.
Peace may be a lot to ask for but I’m hoping you find occasional calm to clear the stress Sending you lots of love


I've been thinking about this post since I read it when it was posted. And then I get tagged into it (thanks for the kind words @Mosi I don't feel wise most days.) This decision feels like a teeter totter. And I get the challenge of making it. For this very reason I've had discussions with my caregivers about MAID - not that they wanted to hear it but to be clear that they understood what I wanted and why I wanted it.

I had a hard decision to make the other day. (It wasn't a treatment decision to be clear) I talked to a few wise people, explored the pros and cons, even dragged out a piece of paper and drew the decision out. No answer emerged. So I pulled out a coin and flipped it. Tails - I don't. Heads - I do. I flipped and covered the coin, grounded myself with a deep breath and then uncovered it.

Then comes the important step. I checked in with my gut as I saw the answer the universe had given me. When I felt nothing I knew that the coin was giving me the right answer. Sometimes you just have to trust yourself and the universe.

There are parts of me that say “Please look into your treatment at least. There are a lot of tools to manage side effects. Modern chemo and immunotherapies are not like the bad old days.” But I'm not walking in your shoes and I can't know your journey to this point. What I can say is that you are showing tremendous awareness of those around you. Make memories with them. If palliative care can give you opportunities to make those memories that are important then do it. Have the hard discussions - the freedom that gives you when it is done is amazing.

Wishing you courage, serenity, and wisdom as you move on.


13 Posts

Thanks Angus. I have had to be aware of all and everyone for a long time. During that time I have learned, That there is worse things than dying, and, That I am not afraid of dying, I am afraid of not living. I am an absolute lover of life. Having said that many, many, many times throughout my life and health difficulties I have not been suicidal, but have talked with God and said, if you think it is time, I am ready. He never ever took me. That says an awful lot. I also endured the excruciating pain of helping both my parents through their struggle with cancer. So I know the pain and anguish of watching someone making a horrible journey alone with only the ability at best to support them. It is interesting you mention MAID. As since the MGUS diagnosis in Oct 21, I have been pretty sick. My day consisting of continual health maintenance and energy bargaining. Sometimes I was pretty sick. I promised I would talk to my rheumy about assisted death for people with AI illness the next time we met. I had had no further testing at that time, knew nothing of kappa or lambda. It caught her off guard I think. She said that you are asking that question means we are failing you. Broke my heart for her she is the single one person who believed me from the beginning when others for years told me it was anxiety…..and the single person who made me believe many times together we could get the inflammation to settle. And we did. I told her that my concern was that the inflammatory processes that sometimes cause terrible brain fog would not allow me to make informed decision according to the law at some point. And I refuse to leave that decision to my beloved at such a horrible time when he well knows my wishes. He will never have to make that decision I will not let that happen. So we agreed that my wishes were known and in my file for now. But as the days with this new information progress I will visit the subject again. Then pray that it never be necessary. It wasn’t for my Mom or my Dad they passed peacefully in love and support. Thank you Angus,my prayer for you is that you never need it either. Teddy Bear

1267 Posts

Hello and Welcome @TeddyBear Others have already given some meaningful insights here for you to ponder. Your post reminded me of a trying issue that my late wife and I went through. At one point, she chose to not consent to certain treatment options such as chemo. She did not feel it would improve her quality of life, and that chemo would likely shorten her life. No one could make that call but her. And I think that we were both relieved to not have to worry about that. We were told that even with chemo she just had a year left, but she ended up living for five.

It sounds like you have been faced with similar decisions in your situation. And that you realize you may not continue to be able to make your own decisions at some point? If this is the case you are doing the right thing by sifting through the issues while you are able to. It's important to get your wishes done in writing so that you don't have to worry about that later. My wife and I did that and it really helped a lot when the time came.

I hope you will keep in touch to let us know how things are going.

203 Posts

Hey @Mosi when I read that you hope your mom goes before you because she doesn’t know you have cancer it jumped out at me. I just wanted to say how honourable of you to protect your mom. How noble, kind and completely selfless of you. I totally respect that.

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