The Home Care Hospice Nurse advised Buec 5 patches + Oramorph liquid to take if he has spike through pain and requested that off the GP. The Oramorph even 1 ml gave my husband nightmares and panic attacks, especially during the night
We have asked for a CT Scan to see how the metastases progression is and where it is now, but not forthcoming. I was worried about MSC as right leg after he sat for a while was going to sleep until he moved about. The Homecare Hospice nurse did a physical check to exclude MSC and found no signs
The Hospice nurse & GP (our regular GP on AL) are disagreeing on medication. GP wants to increase patches to 10, the Hospice nurse wants to continue with the 5 but try an alternative to Oramorph. We had two 5 patches left and told by nurse to use both in one go which needs changing on Wednesday. She is putting her request in writing to GP. Checked with pharmacy today as yet only prescription for 4 patches of Butec 5
Last night my husband was in so much pain, didn't know what to do with himself, I gave him a diclofenac which had been prescribed for me (which I think is contra indicated if you are Warfarin) he said it was like a miracle, slept all night and said he could turn over without the excruciating pain he previously had, but this morning pain returning back.
The Proctitis which he has had since Radiotherapy 2019 is still a daily battle but Hb 93 holding up since having blood transfusion. Eventually after hassling got a cancellation appointment on the 8th August to see a Gastroenterologist. This is called NHS DIY
PSA gone up from 33 to 59. The Local Oncology Nurse said the referral to the Christie Hospital Manchester came back as not eligible for treatment. Thought about contacting their private clinic, has anybody done that. The local Oncologist has once again offered chemotherapy, even though he said based on “WHO frailty 2 at best” could my husband cope, considering when he had chemotherapy in 2010, 14 years younger, he was neurogenic twice and suffered multiple pulmonary embolisms that is why he is on Warfarin
Just want my husband to be pain free and enjoy some QOL with his family in the precious time left.
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Janhpr
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What an awful time you are having. It's very poor that the hospice nurse cannot get the pain under control and that you find yourself in the middle of a professional disagreement. if a CT would help reassure you, you can get this done privately, but need GP or consultant referral. Would it be worth trying one round of chemo to see if it helps with pain? If the onco thinks he is fit enough. I am not knowledgeable enough to offer any other advice but can only sympathise how bad this is for you both. It should be possible to control the pain. Do you have family close by to help - with the NHS badgering job if nothing else. This might sound drastic and it's not an easy option (given wait times) but if you are desperate then a trip to A and E you might get what you need. Not on a weekend though! Hope someone can help.
Grateful of your reply, have gone privately for a CT scan at the Nuffield before when there was a waiting time of 12 weeks, but you wouldn’t believe the report came back with wrong hip, questioned it, unbelievable. Going to contact the GP at the surgery tomorrow who is the Registered person with CQC to sort out pain medication. I think your suggestion of going for chemotherapy even one treatment has made my husband think that might be the way forward. Having been to A&E recently myself 10 hours until 4am and the TV program showing A&E at our local hospital it would really have to be a last resort. Will get family members to badger if get no joy tomorrow
while it’s “ always “ a really bad idea to increase your meds without asking your medical team…..and especially bad to use meds given you by someone else. You’d never get over the grief if you triggered a heart attack or stroke in hubby.
Having said that : never ever let any of your medical team know you are self medicating with stronger doses or accepting non prescribed help from a friend. This will “ forever “ screw up your treatment and some medication possibilities, going forward into the future.
“ gosh !!! So and so gave me a fentanyl something or other and it helped so much, exactly like we wanted. “ never do this, period , unless hubby is lying in an ER bed waiting service. First your medical team wants to make all the “ informed “ changes that you will rave about. Second once they mark your record as a drug abuser, you are screwed by all the limitations that will cause you.
Much as I respect Kaliber’s wisdom, I see no significant harm in providing him diclofenac (an NSAID) if it gives him such relief and does not irritate his stomach. Strong opiates in whatever doses are required are expected for those managing advanced cancer pain. In this setting it would never be appropriate to label them “drug seeking or abusing”. It is medically and humanely required.
Well you have to be careful. My pcp gave me a prescription NSAID and within 30 days I got really sick and my urine microalbumin hit 300. It’s still at near 300 and that was over 2 years ago. ( trying to get me off norco )
Nothing wrong with taking prescription strength NSAIDS but you should be aware risks exist and , at first , monitor yourself just in case. Just say’in
Very grateful of your reply and understanding and making it clear that diclofenac is a NSAID. Hopefully tomorrow the hospice nurses and GP we will sort out adequate pain relief and we can discuss with Oncology suitable further treatment
I made the Homecare hospice nurses aware that my husband had taken diclofenic which is a NSAID, he has only taken 3 tabs over 7 days as aware of the possible side effects of irritating his stomach and also because he takes Warfarin so cautious, he does take take omeprazole which will help. When you see someone you love suffering you will do what you can to relieve their pain
I was disappointed that my body reacted to high strength nsaids like that and it was probably partially due to some other drugs I’ve been given stressing my body too. Taking it over with your medical support team and even buying a home urine test kit that includes microalbumin are good options.
Additionally , nothing to do with medical thoughts , but I wanted to say I hope you can get some resolution / relief for hubby and yourself soon . A big warm fuzzy ehug out to hubby and yourself . Your husband is very lucky to have such a loving , strong, advocate here on the group for him. I’m keeping positive thoughts for the both of you , and putting you both on my “ transfer of merit “ board.
I totally understand. My wife has a long list of medical issues that over the last 20 years has caused a huge amount of pain. She has been on Oxy in various forms and because of federal guidelines to reduce illegal use she is extremely limited and really needed more to control the pain. The doctors were unable to help because of those new guidelines.
If cancer has a bright side she was recently diagnosed with B cell cancer of the blood. At her last visit to her pain doctor for her 30 day refill of Oxy she causally mentioned the cancer diagnosis and just happened to bring the diagnosis signed by the MO doctor.
Well because of that cancer diagnosis he was able to lift the pill restriction. He authorized 5 extra pills for the 30 days and just that has made a world of difference.
So I totally understand your feeling of helpfulness in dealing with the medical bureaucracy and watching a love one suffer. Wish I had a “magic sword “ to help you.
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