Rage, frustration and sadness

Deterioration of abilities creates rage, frustration and anger. Adaptation is hard when you haven’t had to adapt to body changes much in your life. I think this impacts men much differently from women, especially women who have had children, but then I have never completely lost the use of a limb.

Over the last 3 or 4 months Dave has been losing the use of his right hand, which has extended into the right arm. We do know that the tumor was in a region that impacts this movement and control. Speech hasn’t been as impacted, but there is still some frustration when words don’t come smoothly or the opposite of what he wants to say comes out.

There is also the desire to go out and do things. Like go to the movies, shopping, and anything outside of the house that he can do. SARS-COV-2 has really put a lot of restrictions on what and where he is able to go due to the continuing chemotherapy treatments and his lower immune system.

With me being home working it’s also hard because we have to get used to seeing each other all the time and often I am not able to just drop what I am doing to have a conversation or encourage him to go for a walk or just get outside. I get exceptionally frustrated when he doesn’t do anything to help get strength back, yet I completely understand why as it’s one of those things that while you know it will help, the motivation to get moving and do something isn’t great when you can’t do what you think you should be able to do.

It has been 15 months of challenges and there comes a point in time where you get really tired of everything you do being a challenge, tiring you out or being harder than your brain remembers it being. I’ve never really been through that to this extreme, but do recall injuries that have had a lasting impact on how I function and do things, knees are not fun to injure.

The next MRI is tomorrow. We find out the results on November 17. We keep cycling through the same emotional flow during the 6 week rotations, but this one has been harder as the loss of the arm has really created a feeling of uselessness. I don’t think he is useless, I think that his usefulness just needs to shift. That is always the way I have felt. Throughout life our way of interacting with the world changes with our abilities or inabilities. It is up to us to take responsibility for this shift and do what we can, ask for help for what we don’t do well and let go of what we can’t do anymore.

However, much of this directly impacts our identity. If we can’t do something it changes how we related to those around us and the world. I completely understand the anger and frustration over this, though I haven’t been through it in this way. It takes a different way of thinking to get through it, and sometimes there are very dark days that need to be struggled through to see the bright ones.

I will update after the oncology appointment. Any thoughts, prayers, well wishes, etc are always welcome and appreciated as it’s getting harder than it has been. Those of you that have Dave’s contact please text him. He may not respond, but knowing that people care helps.

We are still in this fight. Your support helps. Dave’s Brain Cancer Journey