Today this post was spot on for me, hope it touches you as well
Numb is the only way to describe the feeling when the CT scan check up shows suspicious spots in a brand new area that require a biopsy. Technically that means that you now have upgraded to metastasis cancer by new cells migrating to a new area of the body. Practically it means your world just got upended again. Is it any easier that this is the second big bad news for us? No. We both know the process ahead is unknown and the outcome uncertain.
Making plans is a waste of time. There are no easy paths forward. There is the certainly that living for today makes sense. That worrying about the what ifs is a waste of time.
Remember that you are both members of the cancer club with many other people facing similar issues. This time Lee is taking the lead, that is a gift for me.
I understand Lee not wanting to talk about it with our friends or family yet. Get more solid information first. Let the concept sink in. Let the emotions roll over us for a while without the complication of discussion or explanations just yet.
So I write it out here. There is safety in sharing feelings and emotions here. This is a safe spot to explore thoughts. I find comfort in reading others blogs. I cannot explain why it is easier to share here on a blog than to tell friends. I think it is because I cannot tolerate someone else’s emotional reaction while I am just centering my own feelings. It feels too raw to share and that keeping it personal feels better for right now.
Decluttering my office or physical space is easy. Clearing out my brain and emotional status is harder. My best defense has been to just stay busy. No time to think keeps all the worry thoughts and fear away. Yet true self care depends on me considering my thoughts, emotional and spiritual needs. Time outside in nature gives me space and appreciation for living, Sharing that time with Lee makes it precious time. Allowing emotions like fear to just run through without taking root is what I strive for.
This last year we both have redefined what is important. I focus on spending time on what matters. I have simplified some things that were taking up too much time with no positive return. This weekend is set aside for office and physical decluttering. I am giving myself some quiet thinking too along with it. That sitting in silence allows my brain to rest. Quiet time gives me time to do a self check on my emotional state.
How I am feeling?
What do I need?
What action will bring me back to balance if I am feeling off?
I have found at times it helps to just accept sadness as your focus for one whole day.
No happy slogans, no motivational reading, no self talk about look on the bright side, no practice of gratitude. Just sink into sad. Accept it, embrace it and allow yourself to feel all of the aspects of sad without judgement.
A funny thing happened when I gave myself a sad day. I felt free of responsibility. I felt content to achieve nothing. I felt relieved at having nothing on my to do list. I did not worry about how Lee felt. I did not consider who needed anything from me. It was almost like a release from all the other days when I pretend everything is great, fine and I have no worries.
I think it would be a better balance to acknowledge sad feelings as they appear on a regular basis. If I were better at allowing feelings to surface and pass along, I might not need a whole day to be just sad. Until I am able to do that one sad day when ever I feel the need to just be sad seems a reasonable compromise.
What tugs at my heart more than anything else are the words: ” I feel really bad, I couldn’t get off the couch yesterday.” There is no reasonable response to that statement.
It is now clear that radiation treatments are no better than chemo treatments for the impact on Lee’s system. Can I help? No. Can I do anything for him? No. Can I fix this? No.
That is my frustration and emotional distress. Can I ask the doctor better questions? Yes.
Can I give him permission to be in charge of how long he does radiation? Yes.
With two brains together we decide he can skip a day and talk to his doctor about options. I am in Florida, but I can be on the phone with them. I offer up what I do know he can take for inflammation with interfering with treatment. Aloe I have in stock, it does help. Eat easily digestible foods, slightly better.
One day everything seems awful, the next day slightly better, no worse than the rest of this past year. I think just the idea that he is in charge and has choices helps him decide to keep going. Use the Aloe daily (thank goodness for market america products), try a different medication and keep checking back with his doctor.
What I appreciated the most was a doctor who asked, Can you keep going? Instead of telling Lee you must keep doing this. Ending with let’s just take if one day at a time.
Do your best and we will see what happens. “We”, is such an important word. Asking instead of telling changes your attitude so easily. Isn’t that good advice for all of us, do your best effort and take it one day at a time.
Waiting for good news
Waiting for the treatments to be done
Waiting for Lee to feel better
Waiting for the days we don’t get asked , How is it going?
Waiting for the time when there are no bills to sort or call back about
Waiting for the time we can start making plans ahead
Waiting for things that I cannot control to be more predictable
Waiting, Waiting, just waiting
Soon I will stop waiting and focus on living today
Soon I will pay more attention to what I love to do
Soon I will live in the moment
Soon I will move out of the shadow of cancer
Soon I will plan how to spend more time together this summer
Feelings run deep, time stands still while we wait in this quiet space called cancer treatment
Just when I think I have a smooth path, I start to feel off balance again. Re focus, more time for me, less time for others. I am starting a morning practice of sitting quietly for 5 minutes speaking aloud phrases that sooth me.
I am loved
I am lovable
I am enough
Let me find peace
Self compassion is a concept I can tell you about, yet I think the practice of it alludes me.
So I am doing an online course on compassion with Brene Brown and Kristin Neff. I like listening to the videos and reading about compassion. I have trouble explaining my own thoughts on the subject. I find it so much easier to be compassionate towards others, recognize their pain and act in a kind loving way towards them. When I need self compassion, I think I am just depressed or stuck and don’t really want to interact with anyone. I would rather withdrawn, be alone, eat cookies and play solitare. It feels like I lack energy for any human interactions or discussions.
I am finding my biggest challenge is learning how to take care of me emotionally.
When fear or uncertainty threaten to run my life, I need to get off that cycle and allow my emotions to move through instead of taking up residence in my brain. It helped me to think of emotions as waves. Some days the waves are big and will knock you down.
Other days the waves of emotions are gentle and will rock you to sleep.
So I am testing a couple actions to demonstrated self compassion.
Sitting quietly with no agenda
Getting outside for a walk
Listening to my self talk. Reminding myself that I am enough. What I do on any day is enough for that day.I think the biggest lesson for me is self acceptance rather than feeling the need to change or improve me. I am enough right now. This is a concept in progress.
What do you do when one of you best friends has negative comments on life?
When this friend would do anything for you, offer up her home, send food, support you in times of need. Yet all her conversation are viewed through the lens of negativity.
I counted 10 complaints in 30 minutes. This is exhausting to listen to. I am trying to be the observer and not react or fix these complaints. What I have learned is some people view life through this lens of what is wrong, that is what they observe, pay attention to and negative dominates their conversation. Then the next step is my friend is a fixer. If I voice any concerns, she jumps in to fix it or offer solutions, actions, what I need to do. I am calling this the super mom complex, even though I am not a mom. Are there times in life when you want someone else just to take care of everything for you? Absolutely.
So my lesson, is compassion, observe, not fix, redirect towards the positive and accept the gifts my best friend offers freely. Own my values of positive thinking and not take on someone else’s viewpoint.
I am learning by just showing up for my friend and focusing on the qualities that attracted me in the first place. We have been through difficult times for each other over many years.
I love this friend for her giving, loving, unconditional acceptance of other people. I trust my time spend with her is teaching me to roll off negative comments and not let them become my main viewpoint. It reminds me to look for the positive in every situation.
You have a choice on what you focus on, when you focus on negative it grows
I choose to focus on positive, so that grows around me
I think you take a friend of many years, just as they are
A complete change of scenery, location, ideas, thinking pattern and different weather.
All these things take my mind to a calmer, saner , safe place. It is the care giver in me that keeps Lee in the forefront when I am at home with him. I know he is capable of taking care of himself, cooking what he needs, managing the daily tasks, Yet, I do more because I want to make his life easier while he is on chemo. The side effect of being on alert for another person is constant low level anxiety for me.
What I avoid: I don’t hover- But I watch
I don’t ask how are you? But I notice
I let all the little things go- Not really
( Seriously you cannot move the plates from the den to the kitchen?) OK So I think that and don’t say anything- just pick up the dirty plates and move on. Does that really sound like I am letting things go? Of course not.
Which is why I am on vacation alone in Miami right now.
Because we both know I do too much, more than I have to, a pattern that is difficult to change while I am there. I need to get out of the house to recognize that anxiety has moved in with me.
When I am home with him, I am aware of how long he sleeps, if it is a good day on chemo or a bad day that will be spent on the couch. This getting away lets me really let go and focus on what I need today, no one else. Why is that important? It resets my threshold for anxiety when I return home. I am better at showing up for him, without allowing that anxiety to creep back in so quickly.
This vacation is a warm climate, reconnect with old friends and spend time on the water for me. Mini vacations closer to home, us getting out of town together for a day works too.
I choose this vacation to spend time with friends who are purposing taking very good care of me, I am not protesting, just saying thank you. The caregiving circle is complete.