Planning for the future when even tomorrow feels fragile
Making plans can feel impossible when caring for a loved one with myeloma
A few weeks ago, my cousin asked if I would join her family for her oldest son’s wedding ceremony this November in Dubai.
“We’ve started to book flights already,” she said excitedly.
My throat tightened. I could imagine it: the sunsets, the warm air, the music, the food, all while meeting family members and friends. However, all I told her was, “Let me check … things.”
But the truth is that I didn’t have to check up on anything. I just couldn’t admit to myself that making plans three months into the future was like tempting fate.
Ever since my mum was diagnosed with myeloma, I have learned not to think, plan, or even visualize the distant future. I can plan for the next day or week. I can sometimes even stretch things further, such as planning to pick up my mum’s medications in two weeks or booking her next specialist appointment for a month out. Those are future events I can think about.
But celebrations like weddings that are planned several months in advance? I can’t make any firm commitments to those.
The paradox of ‘someday’
Before myeloma, my vision of the future included my dreams. However, these days, I feel that the future is simply a spreadsheet of contingencies. And there’s so much admin work involved.
Before, I was good at saving for my retirement and researching exciting holiday destinations like villas in Bali. But after myeloma came into our lives, I found myself living in the moment, taking things one day at a time.
Some would say I am pessimistic. But after three-plus years of caring for someone with a rare cancer, I know it’s not pessimism; it’s reality.
My journals now look something like this:
If her platelets drop, cancel the Airbnb.
If her next myeloma scan results are positive, maybe we’ll binge-watch another TV series.
If her next treatment works, maybe I’ll take a weekend away?
If … Don’t think about “if.”
The systems that keep me sane
Navigating this limbo is a skill I have perfected with the assistance of “scaffolding” that I have built over the years. These tiny structures enable me to have hope without free-falling.
1. The “just for now” list
On this list, I itemize things like:
- a grocery delivery for next week
- a walk in the park on Wednesday
- a phone call with Auntie Julie
- finding out which new series is trending on Netflix
This list is short-term and makes me feel safe.
2. The “someday maybe” folder
This folder may include:
- screenshots of accessible vacation rentals
- a recipe I’ll try once my mum has her appetite again
These things are just possibilities. There are no deadlines.
3. The unwritten rule
This mantra keeps me going when I feel weary and exhausted. It is simply: “Plan in pencil. Grieve the ink.”
Why delegating feels impossible
It’s not as if other people don’t help me out. Many do offer to assist me with my caregiving duties. But what prevents me from accepting their offers is doubt. I cannot predict what tomorrow might bring, so how do I hand over an unpredictable future?
The following are reasons I struggle to delegate:
- The trust barrier: No one knows the difference between my mum’s “good days” and “couch days” like I do.
- The guilt: Does outsourcing her bucket list mean I am giving up?
- The contradiction: I am drowning in today, but I’m also terrified about tomorrow.
A permission slip (for you and me)
Here are things I am now putting into practice. It is all right to:
- Book the tickets. Or close the tab mid-search.
- Allow another person to plan the picnic (even if they forget Mum’s favorite sandwich).
- Say “one of these days,” or say nothing at all.
The future will never look like we once imagined it would. However, it is still ours to determine and shape however we want — one fragile, fleeting now at a time.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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