Coping with long term cancers

Posted by bradmm @bradmm, Feb 28, 2019

I guess on one level, having to cope with long term cancer is better than the alternative. 🙂 However, my wife was diagnosed with CLL in 2006, had chemo, remission 2010, and started Procrit shots for MDS, caused by the chemo, in 2013. I have played cheerleader since the beginning and am constantly trying to point out the good side of things but we're both wearing down. She was getting Procrit shots stating in 2013 every three weeks but her HGB has gotten as low as 6.2 as of last week so now she's having weekly injections. This is dominating our lives and, whereas she used to be down the day of injection and a couple of days following, now she's getting down several days before and after meaning it's near constant. I have gotten her to do therapy with a psych but that was not helpful. Her other main issue is insomnia so that can have a big impact on her state of mind as well and, in reality, she has her bright moments but all this is always right under the surface. We both retired last year so we're both at home together a lot. Although we have gotten involved with some stuff outside of the home, it doesn't negate the underlying stress. Our kids/grandkids are not close by. I feel that my role in just holding things together has grown larger since she's retired and doesn't have the constant distraction to change her focus. I joined this forum, in part, just to have a place to vent so thanks for that.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

robbhiller | @robbhiller | Feb 28, 2019

I am so sorry to hear as I have had cll plus two other lymphomas. Because the mind can be our enemy, I found great help through my Christian faith and the many friends who prayed constantly for guidance, help and His peace. Medicine can do so much and how we talk to ourselves about what is going on is another important aspect. But the other key I found was activating my faith in the Lord. I will pray for you,

zellheff | @zellheff | Mar 11, 2019

Sorry to hear what you’re going through. I’m hesitant to advise because my situation is different. My son has an indolent form of Hodgkins which will require long term monitoring and possible further treatment in the future. This ongoing vigilance can really wear on both the person with the disease and those who love them and care for them.

Any chance of moving closer to kids and grandkids? Spending part of the year near them? Hobbies - art, music? Part time work or volunteering - anything to try and make the focus of your lives bigger.

The best to you!

bradmm | @bradmm | Mar 11, 2019

In reply to @zellheff "Sorry to hear what you’re going through. I’m hesitant to advise because my situation is different...." + (show)

Thank you, Zellheff. Over the time that we've been dealing with this, we've discussed and/or tried just about everything. Yes, distractions are the key and she's doing pretty well at the moment. Kids are 3 hours away and one is moving, with the grandkids, back to Florida soon. I appreciate the response, I know there's no easy answers... I just needed to vent. 🙂

zellheff | @zellheff | Mar 11, 2019

In reply to @bradmm "Thank you, Zellheff. Over the time that we've been dealing with this, we've discussed and/or tried..." + (show)

I understand. Hang in there.

joycer | @joycer | Mar 11, 2019

I understand everything what you are going through. Sometimes just venting helps. My husband is fighting colon cancer and being the care giver can be very wearing. It’s hard to see him not have many good days between treatments. What gives me strength is prayer.

Scott, Volunteer Mentor | @IndianaScott | Mar 11, 2019

Hello @bradmm I am sorry to read of your wife's health challenges. I am also sorry I missed your initial post and am not responding until now.

I am Scott and I was my wife's primary caregiver during her 14+ year war with brain cancer. I totally understand your statement of needing to vent! That is what originally brought me to Mayo Connect a few years ago. Caregiving can be a daunting challenge to even the best of us! As I like to say 'superheros only exist in the comics! Superman and Wonder Woman aren't found among caregivers!' All we can do is try our best each day during this journey with our loved ones.

I'd like to bring the Caregivers discussion group to your attention. It is quite a community of fellow caregivers who are dealing with all sorts of demands of caregiving.

You can see the group at this link https://connect.mayoclinic.org/group/caregivers/

I hope you will cover over there to vent as well! We all have good, broad shoulders for listening and many folks have some good tips and hints about how to manage as a caregiver!

I hope you are having an OK day and that the sun is shining wherever you are!

Strength, courage, and peace!

bradmm | @bradmm | Mar 11, 2019

Thanks, Scott, I didn't know there was a caregivers group. No sunshine but my wife's hemoglobin climbed to 6.9 so we were ecstatic!

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