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Pain

Pain

Posted by Charlie1 on Dec 9, 2020 2:12 pm

Hi everyone,

My husband has terminal stomach cancer and it is now in his pancreas and lymph nodes. They had to change his chemo because he was severely allergic. He has had a couple of periods of extreme pain in his upper back that moves up to behind his shoulders. The last time was 3 weeks ago and it was intense. He was sent for a bone scan and all clear. It went away and we thought it was one of those unexplainable things. It is back and it is so severe that he can only rest 15 minutes at a time and then he has to move. He is on Octi pain meds and that is not even touching it. Has anyone experienced pain like this as a side effect of chemo?

Thanks for reading

Re: Pain

Posted by Essjay on Dec 9, 2020 7:08 pm

Charlie1‍ im so sorry your husband is in pain. Definitely a question for his team - they need to get on top of the pain and find a way to make it manageable.

Have you called his oncologist?
Triple Negative Breast Cancer survivor since July 2018

Re: Pain

Posted by Kims1961 on Dec 10, 2020 10:27 am

Charlie1‍  So sorry to hear about the pain your husband is having.  I agree with Essjay‍  - definitely let his care team know the level/intensity of his pain. Sometimes giving them a scale - like 10/10...so they don’t “normalize” it.  I had bone pain during chemo for breast cancer and it was intense.  My oncologist was able to reduce the dosage of my next chemo to help.

Often a palliative doctor can really help with pain management. They have options that may not be available to the regular care team.  When my mom was dealing with terminal cancer, the palliative team was so helpful in keeping her comfortable and understanding what her wishes were.  

Hope today is a much better day.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Pain

Posted by MCM on Dec 10, 2020 7:24 pm

So sorry to hear about your husband's battle with the extreme pain and can appreciate the stress you are currently going through.  My experience is based on both of my parent's having been diagnosed and subsequently passed away due to cancer complications and myself who was diagnosed with recurrent Stage 4 cancer in 2016, all cancer different but pain from various treatments and cancer itself, a huge issues.  This may seem harsh but I have found that the oncology team just doesn't haven't the expertise with pain management and have had success with a palliative care doctor.  Pain management is a huge part of what they do every day.  
 

Re: Pain

Posted by elle29 on Dec 11, 2020 12:02 am

Help him breathe meanwhile,  if possible deep and slow rhythm   , to use the diaphram , counting with him it may help until referred . But ask about ; If. his  hospitals have Pain Management Programs and Physio Therapist that can help asses , provide a plan of treatment with movements they can do for your loved one . Look under CCS Complimentary Therapy .You can also bring in your own massage therapist if cleared or other therapies he may get relief ! Appreciate you finding this on his behalf , 🙏

Re: Pain

Posted by law on Dec 12, 2020 12:15 pm

Charlie1‍ , Oh my, how painful and frustrating for you and your husband. It was illuminating to read of your situation and, although it must be a terrible time for him, we are glad you reached out to us on this site.
Although I did not have back or shoulder pain during my bout with oral cancer, I did find some relief by wearing a time-release Fentanyl patch on my trunk.
It was a legal prescription of the opiate from my medical oncologist at BC Cancer Centre.
It did not eradicate the pain, but it did help me by reducing the pain so  that I was not focused on it constantly and going insane. Pain takes over the mind and body, so any relief is desirable.
Good Luck, and please keep us posted.
law
 

Re: Pain

Posted by Charlie1 on Dec 13, 2020 10:32 am

Hi,

I wanted to thank everyone for your replies. It is really helping me through this challenging time. They finally prescribed him some long-acting Hydromorphone in addition to the short-acting ones he is already taking and it is helping a bit. I was absolutely surprised to find that my insurance covers the short-acting one but not the long-acting one which of course is far more expensive. Don't understand that! He has been eating ok throughout this and I have now noticed he is not eating barely anything. I try to get him to have boost but he refused. He managed a bowl of cereal yesterday and that was it. He is not nauseated or anything he says he just does not feel like eating with no appetite. Most early mornings before he gets up I am in my office crying and wondering what is going to happen next. I do try to live positively and enjoy every moment but it is getting hard. He has had to miss a couple of rounds of chemo cause his counts are way too low. I am feeling quite isolated and alone. some of my family members want to get together and I always say no cause of first the pandemic and most of all I do not want to risk my husband's health. Then I think am I crazy everyone thinks I am overreacting! I am afraid of what is coming next and I hate seeing my husband like this it breaks my heart. I had it in my mind that he could beat terminal cancer and that things are going to get better and we will have many more years together. I am broken right now I feel like I am losing that hope I have. It is possible to beat this. I have to be strong and we can beat this. 

Thank you for listening to my rant. I am just feeling overwhelmed right now.
 

Re: Pain

Posted by law on Dec 13, 2020 7:10 pm

Hi Charlie1‍ ,
You are not crazy---- you are reacting as any loving caregiver would react....especially when it is your husband who is going through cancer. I certainly relate to you crying and feeling completely unable to control the situation.  My friend Chris cried and cried after her husband Max would fall asleep. She would go to another room and let it all out quietly. She saw his pain, she saw his appetite shrink from opiates robbing his system of hunger, she recoiled at the pain he suffered from his tongue cancer and treatments. Unfortunately, you are going through an understandable Hell, which most people cannot fathom...nor do they want to be reminded of their own mortality and inability to 'fix' your husband or change your emotions.. I am so sorry. Being true to yourself is all you need to do.
Hydromorphone is a morphine derivative, and,if the pills are too difficult or painful to swallow, it is available in a liquid form...far easier to swallow! There is a long-term prescription and also a 'breakthrough' pain prescription..a short term for flareups of pain...It can cost you dearly, but it is worth any price to diminish pain of cancer.
Often, trained counselors are available at Cancer Centres and they can relieve some of your burden if you choose to share with them.  No judgment at all...which is such a relief when dealing with  cancer and all the emotions.
Keep in touch with us...... we really do want you to reach out and share your moods, your husband's and your pains, fears, laughter and reality checks.  💓
law

Re: Pain

Posted by Kims1961 on Dec 13, 2020 7:21 pm

Charlie1‍  Thank you for your update.  You mentioned that they have added some hydromorphone that may be helping a bit.  Does your husband have a palliative doctor that is guiding the care?  

law‍ had a good suggestion about counsellors at your Cancer Centre.  You certainly have a lot on your shoulders.  Having moments of sadness, fear, crying is a way of your body trying to manage this difficult time. Having someone to talk about your own feelings right now , has helped some.  Even speaking to those in the palliative care area, can help as to how to take care of him and you.  

To talk about how things are realistically is not about giving up hope.  We can have both - hope that he can beat this cancer but also what would he want for his last days. Is pain a key issue for him? 

Please know that we are here. Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Pain

Posted by Trillium on Dec 13, 2020 8:02 pm

Oh Charlie1‍  - I’m so sorry that you are going through this emotional pain. You have found a really wonderful support community here. I have nothing to add to all of the wonderful help given by others but just wanted you to know that you have another person here that cares and is listening.

May you find some peace in your days.

Warmest of hugs for you.

Trillium

Re: Pain

Posted by Kuching on Dec 14, 2020 8:27 am

Charlie1‍ , my husband had pancreatic cancer, so this is all sounding very familiar to me.  He started off on hydromorphone, but it didn’t do much except make him loopy.  Then they switched him to oxycodone and Tylenol, which worked a lot better.  He wasn’t eating, and lost a lot of weight.  I insisted that he swallow all his pills with Boost, rather than water, which worked well - the more pills he took, the more Boost he got!

Also, as the cancer has spread to your husband’s pancreas, his lack of appetite may be due to lack of pancreatic enzymes to digest the food.  He can take a pill for that, right before or with his food.  If that’s not already being done, it’s certainly worth asking about.

Hang in there, you’ve got this!
 

Re: Pain

Posted by Mammabear on Dec 14, 2020 10:13 am

Having a loved one in pain is very hard to watch. You can do nothing to take it away. Trust me when I say he is thankful that it is him in the pain and not you.
I haven't seen anyone mention CBD oil. No THC but I used CBD along with pain meds to get through the worse. It took the edge off so I could sleep. 
I also agree with others... now is not the time to gather. You need to protect your husband AND yourself. This is difficult to do alone but gatherings would also be difficult on your husband. Facetime while on a walk if you need to vent outside of your husbands earshot. Or use us here at cancerconnection.
 

Re: Pain

Posted by Charlie1 on Dec 14, 2020 10:20 am

Thank you, everyone, ♥ Your support means so much! 
He all of a sudden developed a high fever yesterday and we spent the day at the hospital. They could not find any reason for the fever so home we went. His temp is normal today so hoping that is the end of that. 
 

Re: Pain

Posted by Lacey_Moderator on Dec 14, 2020 2:12 pm

Charlie1‍ 

Glad you went to the hospital. 

I hope temp remains normal.

Take Care,
Lacey

Re: Pain

Posted by Trillium on Dec 14, 2020 5:53 pm

So glad his temp has remained normal, Charlie1‍ . We are here for you.

Re: Pain

Posted by Traveler on Dec 24, 2020 4:43 pm

Charlie1‍  I also had a lot of pain in the areas your husband has.  I was able to get a round of radiation for the area in my back & shoulders.  i didn't know they used radiation to help with pain.  It was only one session.  For about 2-3 days after treatment there is a lot of pain still, but it eased off enough that on bad days I can now manage it with a couple of Tylenol.  I wish you both all the best.

Scared and helpless!

Posted by Charlie1 on Dec 28, 2020 1:31 pm

Yesterday December 27 was my birthday. It was also the day I held my husband as he cried and told me his body is giving up. My husband loses 1lb a day and now ways 112 lbs. He sleeps most of the time and I sit in my office by myself trying not to disturb him. Yesterday was the first time I have seen my husband so afraid. I don't know what to do or how to help him. I am there for him and do whatever he needs.  I am now having panic attacks and feeling quite depressed. I really don't know what to do. I called the emergency oncologist and she said she was not too concerned cause he is no longer experiencing a lot of pain and he is not nauseated or vomiting. I am afraid really afraid and it is breaking my heart. 

Re: Pain

Posted by Cynthia Mac on Dec 29, 2020 9:48 am

Oh, Charlie1‍ , I am so sorry you’re going through this.

Earlier this year, I spent 8 days watching my father fade away from us. Like your husband, Dad was afraid of dying, but by the time I was able to see him (thank you, covid), he had lost consciousness, so that wasn’t something I had to go through.

I’m going to tag Kims1961‍ . She has had training in palliative treatment, and I believe she will be able to offer some words that might help you.

A very good friend of mine lost her son to cancer just over a year ago. She said to me that once her son found peace with his situation, she was able to make her peace.

I would love to be able to hug you and take away some of your fear.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Pain

Posted by Kims1961 on Dec 30, 2020 1:30 pm

Charlie1‍ , Christine,  like Cynthia Mac‍ , I am so sorry to hear about the decline in your husband. I remember your posts about the pain he was in, so am glad to hear that he is not experiencing pain now.
 There are two important pieces to your post.  How your husband is managing and what supports you have.

It sounds like pain is being managed well, so that is a relief, i'm sure for you and him. Have you had a chance to ask him about end of life decisions?  Does he want to be at home? Does he have any wishes to see people? write out anything ?  Some people use their cellphones to record some of the conversations, things he may want to say to others etc.  Some people like to share looking at photo albums, telling stories, singing, watching favourite movies , or nothing at all but being able to hold a hand or each other.  It's ok to take photos as well, if you want and he does?  Some people shy away at this time, but photos can also capture the love and care at end of life.  Your husband's sharing of how he is doing on your birthday, is a gift.  It is clear that he trusts and loves you.

Do you have a palliative doctor or nurse involved?  Sometimes they can be helpful with end of life care, wishes and understanding what really happens when we die.  This does not mean, that we give up HOPE for a miracle, a cure, but also allows us to be prepared for what comes next.  We really don't talk about the dying process well.

I'm going to attach a link to a palliative doctor who spoke on cbc recently about what happens when we die.  Please, please, don't feel you need to listen to this, or if you are not ready or want to, that is of course, ok. I wished i had heard this before my mother died.  I had no idea what happens, what she needed and felt lost and scared.  My hope that this may help you feel less afraid.


I'm sure your husband is also worried about you.  Do you have some supports right now? Crying is just our body releasing the stress and sadness. Sharing this sadness with your husband, may be of some relief for you both.  Or...not.  You know yourself the best.  Trust your instincts. It's also ok to be feeling angry, afraid, "why me?", "why us"?  Just try to not stay there.  Time is your gift right now with each other to share those memories, thoughts or just touch.


https://www.cbc.ca/radio/whitecoat/it-s-not-what-you-see-in-the-movies-doctor-demystifies-dying-1.5496491


Please feel free to reach out to me . You are not alone.  We are here.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Pain

Posted by ws33 on Dec 31, 2020 1:38 pm

Hi Charlie1, I am so sorry that your husband is suffering and so do you. My father had lung cancer, diagnosed one year ago and just passed last Saturday. I understand your pain. In his last few months after the chemo treatment stopped, the palliative care team started. The home nurse, home doctor, OT, dietitian and PSWs were a great team helping to care his needs. My father’s pain was managed. Besides hydromorphen, there are other types of pain killers to help to manage different types of pains. The palliative doctor would be a great help in this area as he/she knows how to assess the pains. I found our home nurse can provide a lot of great suggestions. You can ask your oncologist to refer you. The radiation can help on managing pains which you already know. My father’s disease affected his own digestive system and he could only eat very very little.Hence his body and health rapidly deteriorated. As you and many mentioned, it is very difficult for family to see. I often got into panic mood. My father also went to his acupuncture, which can help pains. I actually think this was more a physical logical treatment for dad and my family, as it seemed there was still a treatment. Not hopeless. My best wishes. Please take good care.  ws33‍