HELP AT MY WITS END!!!!

My husband has mesothelioma. He was diagnosed 5 years ago and given 6 months to live. We managed quite well and lived normal lives until Christmas 2012. He go pain in his right shoulder and thought he had done too much at the gym. As it didn't go we went to see his cancer consultant who advised it had spread to his shoulder. He has been in and out of hospital since May this year in chronic pain. He has had Oramorph, Fentanyl and Ketamin and they are not working. He had a cordotomy (operation where they go into your spinal cord and kill the pain nevers) a few weeks ago for his right side pain and it seemed to work. He then had a left side 10 days ago. This has only worked partially. However, both ops have left him off his legs and very weak. He is still experiencing pain in the top part of his right shoulder (the cordotomy doesn't work that far up. Only from the second vertebrae down). The pain has been so intense the district nurses have injected him with diamorphine but that wipes him out for days and he can't speak or eat. We are in a routine with nurses and carers and he is trying to stand with a frame. He is an ABSOLUTE FIGHTER but is crying out with the pain in his shoulder even though I have given him ketamin, oramorph, pregablin, paracetamol, ibuprofen and steroids alread this moring. He says he just wants to die. My heart is being ripped out listening to the man I love say this and I am so helpless as to what to do. I have booked an accupuncturist to come to our home on Tues to see if she can help.

Can anybody offer any advice please? I don't know what else to do. Every morning I think this will be the day that the pain goes. xxxxxx

Hi Vicky, I am UK based in Manchester. We have tried inpatient, he was in for 8 weeks and they still couldn't control it. He has had amytrip and it was no good for him. They tried lots of combos over the 8 weeks. They have just increased his fentanyl patch to 75mg (he had the under the tongue one and it was no good) and increased his oromorph from 7.5 ml to 10ml. No nurses today as they can't really do anymore as I control it. The only thing really is diamorphine injection, which he has had before. He doesn't want that though as he is then completely out of it. I hope the accupuncture works!!! Thank you for your repsonse. xx

mrsportion,welcome and I'm so sorry to read what brought you here.God Bless both of you.It must be horrific pain and it must be terribly hard for you as well.

Has he been prescribed Oxycontin.Fentanyl is probably stronger and is easier to maintain at a level in one's body but sometimes different medications are more effective on different people.

Again welcome and God Bless the both of you,
Rick

I'm in the uk too, in Scotland. I'm so sorry your husband is so ill, I can't imagine just how hard it must be for you.

My daughter is a palliative care nurse and I know there is so much more available to you Han you have been offered. There is scope to increase his patch. It's a very fine line finding the right dose of pain meds, enough to really help the pain, but not to knock him out. Do you have a McMillan nurse, they are seemingly very good in situations like this, they know the people to speak to when there is a problem. I'm pretty sure there's more to offer at home before he has to have inpatient care, but maybe a short stay in hospital just to sort out his meds might be a good idea. I know palliative care units have consultants who offer help on pain control, not just to those in their hospice care. Nurses can phone for advice. There are no doctors more knowledgeable about pain control than hospice doctors.

I'd agree with the others, it doesn't matter what day it is, your husband doesn't deserve to suffer. You should just call NHS24. I hope with all my heart that accupuncture offers him some relief, and also helps him to relax. You make sure you take care of yourself too. All this must be taking its toll on you too.

Take care, I really hope things improve for you both. Keep in touch, let us know how things go.

Jane

Hello everybody and thank you so much for all your kind advice and Angel blessings.

We have not had oxycontin although have heard of it. I must stress that the district nurses are out of this world. We are at the end of the road with his pain as we have already done an 8 week stint in the hospital with the Macmillan team trying to tweak his meds. As a last resort, because even the ketamin didn't work, they offered him the cordotomy (google it,it's very interesting). We are fortunate to live only a few miles from a hospital where one of only 5 drs in the country perform this tricky op.
His fentanyl patch increased to 75 (every 72 hrs) just the other day so they increased his morphine to 10ml syringe every hour if required. As his pain much worse first thing in the morning I even got up at 7 today and gave him one syringe and left him asleep for an hour thinking at least the meds could kick in before the carers came. However, he sent them away as said too painful to wash and sit up. I managed to coax him, an hour later, and got him dressed. It's my birthday today and I managed to get a few hours off, whilst his daughter sat with him, and have a break. He has been completely zonked out though for most of the day and since I have been back at 4 he is still fast asleep in the chair, as if I have given massive sleeping tablet. At least he is not complaining of pain though but we not communicating.....I miss him!!
We have been together 11 years and we managed to get out a couple of weeks ago and tie the knot......very happy xx

Thank you all again for your invaluable advice. I will let you know how the accupuncture goes tomorrow.

Mrs. I had to edit out your last sentence as per the forum rules we cannot discuss that here at the forum.

Post Edited By Moderator (straydog) : 9/30/2013 2:24:27 PM (GMT-6)

Susie thank for your kind wishes and advice re the Fentanyl. I will discuss with the Dr xxx

Diane, thank you xx

Hi everyone. The accupuncture doesn't seem to have done anything.Hubby has not been much better. He slept the whole of yesterday and then went to bed at 9, when the carers came, and slept until 8.30am. He has a bed sore too now:(
He didn't want to get up today either but the nurse coaxed him and his friend called around and he cheered up. Pain seems to be settled now. Morning is so so bad. Nurse made a point that he is sleeping so not having any oramorph for 12 hours, although I don't want to wake him for meds, maybe a syringe driver may help?? Pain Dr. coming to visit him Tues morning but he thinks it's just disease progression. I feel as though he is giving up on us. I am not giving up. Every day I pray that the next will be better and he will have less pain xxx
Straydog - sorry can't remember what I said that was wrong but sorry again x

Oooops right, I see.....sorry.

Yes. I mentioned to Dr. that as he regularly has a temp of about 39.5 the fentanyl could be getting into his system too quick and therefore the patch not lasting the whole 3 days. They want me to monitor how he is on his next patch change (tomorrow) and see if he is worse on the 3rd day. They say I could probably change patch every two days. Dr says cortisone injection would not work but I don't see why he can't try it and see.

Have a lovely evening. x

Just to let you know that my husband passed away on 14 October 2013. The water infection developed into septicemia and he spent a week in hospital in even more pain.

Thank you to everyone that has supported me, even though I was fairly new to this page.

My life is shattered beyond belief.x

Good luck to everyone else. Pain is an evil thing. The Coroner said to me that he sees many deaths in a week's work but mesothelioma is one of the cruellest kinds of all.

MrsPortion,

I'm so sorry for your loss. You are an amazing wife. Please remember the good times and try not to focus on the way he passed. I'm glad he is no longer in pain and I hope your pain will cease over time. My daughter died in August 1995 and it still hurts but I realize that if she were still here she would be very sick and now she is in a place where nothing can hurt her.

Please feel free to visit us from time to time... I know your were here for your husband but one thing we CP'ers know about is pain. Emotional and physical... I know that nothing I say can take away your heartache but I will keep you in my prayers.

We are here for you...

Linds

I was just getting familiar with your posts when I got to your update,...

I am so very sorry for your loss. 

Please feel free to still come in and visit us for support.

M.

I am so so sorry to read you bad news. There is nothing I can say that will make you feel better.

As some have said, try to focus on the love and joy you had. You became his wife, I know he must have loved you dearly. I don't think anyone could have done anymore or cared more.

My heart goes out to you.

God bless

Jane xx

So sorry for your loss.. so happy that you'll had 11 years together.

You remain in my prayers