Diary of a Caregiver: Overwhelming Reality of Cancer

Swept Under The Welcome Mat: Diary of a Caregiver-Some Advice from Experience Volume 2 

Caring for a Spouse with a Rare and Aggressive Cancer: A Journey of Love, Strength, and Resilience

Life takes unexpected turns, and nothing prepares you for the moment your spouse is diagnosed with a rare and aggressive cancer. The world shifts beneath your feet, and suddenly, you step into the role of caregiver—one that is deeply challenging, emotionally draining, yet profoundly filled with love.

The Overwhelming Reality of Diagnosis

Hearing the diagnosis is like being hit by a tidal wave. Words like “incurable,” “aggressive,” and “rare” echo in your mind as you try to comprehend what lies ahead. There’s fear, grief, and uncertainty, but amidst it all, there’s also an undeniable sense of purpose—you become your spouse’s advocate, their support system, and their unwavering source of strength.  You step into survival mode and go full steam ahead, ensuring they are in the best hands and have the gold standard of care.  People always say I am so strong, but I am NOT strong, I am just trying to survive, keep my head above water, and keep my husband with us for as long as possible.  This is not fair for anyone to endure and I cannot make it make sense.  

Navigating the Medical Maze

From countless doctor visits to complex treatment plans, navigating the medical system can feel overwhelming. As a caregiver, you become the bridge between your spouse and the healthcare team, ensuring they receive the best possible care.

• Stay Organized: Keep track of appointments, medications, and treatment schedules.  It helped me to record the appointments and calls with this recorder I have attached in the link.  Voice Recorder . I also used this cancer Planner and my MacBook was a lifesaver. I used the voice recorder at the appointments and calls, the planner to keep track of all appointments and calls, and my MacBook was so valuable to input electronically all of his daily scheduling or medicines, exercises, moisturizing, etc.  I could not live without these three items.  I hope they help you as well.  

• Ask Questions: Advocate for your spouse by seeking second opinions and exploring all treatment options.  I went online and did research, not only on google, but using social media to reach others with the same diagnosis or similar.  I called the top four hospitals in the country to specialize specifically in Cancer and had his records and biopsy transferred to their team for another set of eyes.  I felt you cannot have enough brilliant minds looking at his case.  Different hospitals collaborating together to think outside the box.  With rare and aggressive cancers, each hospital has their own research they are conducting.  They all also have their own clinical trials they are conducting.  It was important for me to ensure we were doing everything possible to give him the best chance considering his poor prognosis.  I could not leave it to one team of doctors and hope they could figure it out with little to no data.  It was my role now to advocate for him, since he could not advocate for himself.  He has always been our rock and now it was time to be his rock.  

Emotional Toll and Finding Strength

Caring for a spouse with a terminal illness is emotionally exhausting. The rollercoaster of hope and despair can leave you feeling helpless and drained. But within the struggle, there is resilience.

• Allow Yourself to Feel: Grief, anger, and fear are normal. Acknowledge them, but don’t let them consume you.  I could hold it together for 90% of the time, but that 10% of the time I would break down and when I did, it was ugly and it was very difficult ti stop.  I would allow myself time during my shower or if I was out running some quick errands in the car.  This way I could release all that emotion and cry as much as I wanted, then pull it together, breathe and keep moving forward.  Do not assume your spouse or loved one wants you to always be strong around them.  If they have been your rock your entire relationship, they may want to still be your rock.  My husband made it very clear that he did not want me to cry alone.  He still wanted to console me and hold me if I needed that emotional support.  Do not take that away from them, if they still want to be there for you. 

• Seek Support: Talking to a counselor, therapist, or support group can be incredibly healing.  My husband and I both spoke with a therapist every other week to help during this very tough time.  Therapy can be very healing and it has always been a positive thing for us.  

• Find Moments of Joy: Even in the darkest times, small moments—laughter, a shared meal, or reminiscing on happy memories—can bring light.  When my husband is feeling well enough, we are our normal silly selves. It is sad when your loved one is in pain or exhausted or just not feeling well due to their illness, so when they are having a good moment, grab onto it and embrace it with everything you have because the future is very uncertain. 

Balancing Caregiving with Self-Care

It’s easy to put your own needs last, but caring for yourself is just as important as caring for your spouse.

I will admit, I am still working on this part of caregiving.  It has only been a few months, so I am still trying to continue to advocate for him and spend every moment I can with him, because of his prognosis.  My spouse unfortunately has a cancer that even if they "cure" it, and I use that word loosely, it is known to come back.  We have to get to it before it takes over.  He is still recovering from radiation and chemo, so when he feels well, I am with him enjoying his company.  

• Set Boundaries: It’s okay to ask for help from family, friends, or professional caregivers.

  Again, not something I have mastered yet, but it is important.  People want to help and are genuine in their offerings.  I tend to ask the same people over and over again because of my comfort level with those people.  

• Take Breaks: Even a short walk, a nap, or a quiet moment with a book can recharge you.  I have been able to take some short walks a couple of times.   Friends and family have asked if I wanted to grab a coffee or talk and part of me definitely wants to do that, but part of me does not want to leave him or unleash all of those emotions with someone else.  That is a block for me and hopefully I can get past that, but for now, I am still mainly relying on my "person", which is my spouse.  

• Prioritize Your Health: Eat well, stay hydrated, and try to get enough sleep.  I know this is easier said than done, but if you are not staying healthy, you cannot take care of your loved one.  

Cherishing Every Moment

While the future may feel uncertain, every moment you have together is precious. Focus on creating memories, having meaningful conversations, and simply being present. Love is not measured in time but in the depth of connection shared.

Moving Forward with Courage

Caring for a spouse with a rare and aggressive cancer is one of the most challenging experiences life can offer, but it is also a testament to the power of love. Through the heartache, you discover a strength you never knew you had. You are not alone in this journey—lean on your support system, embrace the love around you, and take it one day at a time.  I have found it comforting to start a Caregivers TikTok and build a community that understand and can empathize with each other.  Most people cannot understand, even though they want too and so desperately try to understand, they just cannot grasp it fully.  

If you or someone you know is going through a similar experience, know that your love and presence make all the difference. Stay strong, and never hesitate to reach out for help. Even when you may feel like you are not, YOU ARE DOING AN AMAZING JOB!

💙