“Things I learned along the way” … in the event this may help others, I thought I’d share …
If you or your loved one is struggling a great deal with pain, you may want to consider 1) having a pain pump placed 2) acupuncture.
As my Jeff’s pain became harder to manage with his drug regimen, we were referred by palliative care and his orthopedic surgeon to an actual pain management specialist.
Jeff’s drug regimen was working, but wasn’t lasting as long as it had in the previous months. He was coping with extensive bone mets, but he also had pretty significant arthritis in his hips which caused a great deal of pain and limited his range of motion.
Many of the medications that Jeff took for the bone mets, unfortunately didn’t cater to arthritis pain. His orthopedic surgeon suggested that Jeff try cortisone shots, however after we were referred to the pain specialist, we learned he wasn’t a candidate for said treatment as it had the propensity to spread the cancer into his joints.
It was suggested that Jeff try a pain pump. In retrospect, we should have moved forward with this option right away, but at the time Jeff just didn’t want to endure another surgery or hospital stay. Although his pain was getting harder to manage, it hadn’t reached a point to where it was unbearable.
As it was explained to us, a pain pump would provide more consistent, fluent, 24 hour relief. It would have taken the place of his long acting pain medication, although he’d still have meds for breakthrough pain.
By the time Jeff changed his mind and wanted to move forward with getting the pump, his health had started to decline more. We never even made it back for the follow up appointment to discuss having it placed.
It’s a small regret as Jeff’s palliative care team was just so incredibly awesome and they did everything in their power to keep Jeff comfortable. I just think had he had the pump, we would have avoided the times in which he hurt more while palliative care tweaked his medications.
Just something to consider as you navigate this journey.
Additionally, Jeff was referred to acupuncture. Much to our surprise, acupuncture provided a great deal of relief.
They targeted areas from his head almost down to his feet!
He only managed 2 sessions before passing, but it’s something he wished he had started sooner and he would have definitely continued.
~ Stephanie
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Thanks Stephanie. My husband has palliative care but so far no pain but I will remember this. We hope pain stays far away.
Been wondering how you are doing. When my Mom died it created a huge void in my life as I was her caregiver. It took at least a year to come out of mourning and to remember I couldn’t call her on the phone anymore.
I’m hanging in there … due to the holiday, things got kinda prolonged. The visitation is tomorrow evening, no formal service, and then private family burial Wednesday.
I’m ready for this to be “over” … I’m just so tired, emotionally and physically, although I now question how my days will be filled … it already feels so utterly lonely.
After my Mom died I found a part time job and that helped. Also went to some grief support groups which were eye opening and made me aware of how fortunate we were that she didn’t suffer long.
How generous of you to share this vital information with us! You are honoring Jeff's memory in a deeply meaningful way by educating those of us who may face similar ordeals. Thank you and bless you! With sympathy & gratitude, Lyubov
Hi Stephanie …. Thanks for posting this great additional information on such an important topic. I have a couple questions if you can help ? When Jeff was on the heavy opiates , did he experience bowel blockage/s and any bowel sepsis issues in the process ? I’ve been on merciful pain relieving opiates for , probably , longer than Jeff and bowel blockage and resulting sepsis are , literally , a daily fight - concern for me. I can state from recent personal experience that bowel blockage sepsis is the sickest most horrendous illnessI have ever experienced, bar none.
In past times 40s, 50s, early 60s …
opiates were administered in pills that contained their own laxative built in. Did hospice prescribe any of those or did Jeff take any counteracting laxatives and if so , do you remember what those were ? Did he even need any ?
I could guess that Jeff wasn’t on the hospice pain meds long enough to develop that bowel blockage problem, so it wasn’t an issue, but it never hurts to ask.
I know I’ve said this before but it bears repeating .. you are a great and amazing lady … hopefully you’ll be able to lay Jeff and everything to rest Wednesday and begin to move forward to new horizons in your life. The next chapter, so to speak. Another warm hug out to you.
Jeff started on opiates pretty much from the start of diagnosis. His journey began with emergent major surgery to remove a tumor from his spine. His recovery was absolutely grueling and he was obviously prescribed pain medications for this.
As he recovered and was due for radiation to his spine where the tumor was removed, excruciating pain set in his (I think) left femur. When he went in for radiation to his spine, they also radiated his femur. Although the radiation worked like magic in resolving his femur pain, it seems once the pain started, it just never stop.
Before long it was his right femur, his hips, his shoulders, various places on his back … it was never ending.
Jeff was resistant to seeing palliative care, however, when it was clear his surgeon would no longer be prescribing pain medications he didn’t really have a choice. We started with palliative around month 3? 🤔 something like that.
Along with a hearty regimen of pain medications, palliative prescribed a couple different stool softeners.
Jeff pooh-poohed the idea of having to take stool softeners and stubbornly refused to … in the beginning.
Although he never experienced sepsis, he did experience horrific constipation. Drop you to your knees, reduce you to tears constipation.
A self inflicted misery, but wowza, I felt so bad for him!!! It was truly awful.
For 14-15 months or so, Jeff adapted a regimen that was heavily laced with stool softeners. He took the max amount 3x daily.
As awful as the constipation was, I can’t fathom bowel blockage sepsis and I’m so sorry you ever endured that.
Should Jeff miss a dose or 2, it would wreak havoc on his system. He was very careful to always, always take the stool softeners otherwise he would assuredly suffer the consequences.
Jeff passed away after being on hospice 3 days. He came home Saturday afternoon and was gone by the wee hours of the morning by Monday.
Upon discharge from the hospital, all non-essential scripts were nixed. If it didn’t cater to pain, he didn’t take it. Hospice had to change his scripts to liquid, a patch, and a dissolvable pill, but to my knowledge none of the meds addressed potential constipation issues. Had he been on hospice longer, I imagine this would have been immediately problematic. Mind you, by the time Jeff got home he was nonverbal and rarely lucid.
Yes that’s great info ….. plus it’s good to know more about hospice too…. Great answers Steph. Thank you very much. Yea , you’d think the nightmare of solid immovable stool and getting it moving ….. out , was enough of a painful ( opiate induced ) nightmare . I think , like with Jeff and myself that it’s way more common of a problem than is generally mentioned / known. The problem becomes that the stool backed up behind those blocks … ultimately becomes septic sewage right in your gut…. then the profoundly awful infection sets in.
And yes … my GP is borderline at sending me off to pain management clinic , so she doesn’t like having to write those opiates for me ( never mind I’m deep palliative care ).
Just a thought. My wife is on heavy pain meds from pain management doctoer for 5 back fusions. Constapation is whicked. We did find a medication called Movantic. Works great !! Highly recommend!
So sorry to see Jeff leave us. Thankyou a lot for the pain management info. I will try to remember it when I need it....(probably sooner than later ).Doug
Jeff declined so rapidly at the end he really didn’t get a chance to explore some of his options. I sincerely hope better for you. Should you genuinely be interested, I might check into your alternatives now.
Folks. My sweetheart wife isthe victim of constant backpain from 5 fusions. We have considered pump. But have not explored accupunctute. Is there a way to f8nd professions and success cases. Any suggestion on how to appoach a accupunturist or aClininc? We are phoenix base
For a referral to acupuncture, I would suggest approaching either your wife’s primary care doctor that manages her back pain or her general primary care doctor.
My Jeff’s oncologist actually referred him. As we were seen at Mayo, Rochester; his oncologist simply referred him to an acupuncture therapist within Mayo.
Jon had a syringe driver (pain pump) installed for his final five days at home as he was no longer able to take anything orally. It kept the pain and vomiting under control and he spent most of the time asleep, unconscious for the last 36 hours. Thank goodness for this gadget - the pain had completely escalated out of control. And he REALLY didn’t want to go to hospital. He was on strong opioids from diagnosis two years ago so constipation was a big issue, particularly as he also suffered from very painful radiation proctitis. I’m a nurse and did my utmost to make sure he ate and drank the right things - much porridge, pear prunes etc. And also dosed him up every day with Movicol, a wonderful stool softener. I felt like I was nagging him but it kept him out of that particular trouble for the most part. Jon has now been dead just over two months and I feel like I’m missing him more each day. Initially I was shell shocked and just relieved that the suffering had come to an end. The terrible worry and stress I felt -and dread about what was to come was finished. But now all that is fading and I just remember John as the lovely man he was - and I want him back!!! Grief is a strange thing, I actually grieved much more in the 2 years before his death than I am doing now. Tears every time I left the farm and drove to and from town etc. Watching the deterioration of a strong, vital, energetic man and knowing it was going to get much worse was heartbreaking in the extreme. But now I can face the day without that terrible leaden feeling. I have two lovely daughters and two little grandsons who bring much joy. So there is much to live for - and Jon would absolutely have wanted us to be happy. And I can see now that this will be possible.
I sympathise so much with your pain, it’s a horrible time. You devotion and advocacy for Jeff has been truly inspirational, he was so lucky to have you.
I have two lovely daughters and two little grandsons who bring much joy. So there is much to live for - and Jon would absolutely have wanted us to be happy. And I can see now that this will be possible.
I can picture Jon grinning about what you posted. God Bless...
What an amazing human you are that you are still thinking about the pain of others while you are going through so much of your own. I wish you the very best at finding your way through this difficult time.
Thank you for your time and consideration in sharing this info and the suggestions with us, Stephanie. I was on opiates for awhile and agree that the constipation is a huge issue.
Dear Stephanie! You are always caring for and helping others .. .. God bless your family! Rest In Peace Jeff🙏🕊🕊🕊❤️
My husband has Parkinson’s and has struggled with constipation due to that. He is not on pain killers. He recently got a PEG feeding tube and while adjusting to the formula experienced his first ever in his life diarrhea.
We had decided that dealing with diarrhea was worse than constipation due to clean ups.
After reading all the helpful information in this post now we decided constipation is worse and potentially more dangerous. Thanks for theses valuable tips.
My husband had a pain pump placed in January. It is a process to get the right dose and the right drugs. The doctor is wonderful. It does not take all the pain away as he has severe mets, but it makes it were he can live. The biggest plus is he does not get the doped up feeling from taking the drugs orally. I am so glad we did this.
It’s great to hear it’s working for your husband. I do wish we had known of this option sooner for Jeff, but also hope stories like ours will help others going forward. ❤️
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