Looking after someone with bladder cancer, currently undergoing a great deal of pain

Hello and let me welcome you to the community. Sorry to hear your partner is in such pain. I do not have a stoma, so not in a position to offer much advice. I hope somebody comes along with experience of this to offer some help. Best wishes.

Hi JohnSN,I’m sorry that your partner is in pain and that his cancer has spread.Does he have a specialist cancer nurse ? It sounds like he needs to be reviewed regarding pain medication.I’ve certainly had excess wind since cystectomy and no one told me that would happen.Constipation is made worse by morphine as that is one of the side effects of the opioid drugs.Does your partner take anything for the constipation ? My mother was on morphine pain patches but found prune juice worked better for her constipation than the medication prescribed by the dr.I would contact the gp/specialist nurse or urology team and see what they suggest to help the pain and constipation.The stoma nurses will help if the pain is stoma related.Best wishes Jane 

Hi Jane, Thank you for your helpful reply. P. has now spoken to his care nurse, and the doctor is not sure why his pain is so bad, but the team are going to have another look at the scan. He is taking Movical morning and night for the constipation but we shall certainly add prune juice to the menu. I hope you are doing well now! best wishes John

Hi John,I’m glad the team will be looking at the scan.I hope they can do something to help.I was diagnosed a month after your partner and had a cystectomy in Sept 2019.I felt better last year than I do now so I’m having a scan soon.Best wishes to you both.Jane

Hi Jane, P. has had his pain medication reviewed and is taking morphine in pill form. this is working much better! I hope that your scan works out well and that you will soon feel better. P. has had some low points over these two years but has bounced back, sometimes quite fast, sometimes slowly.  all best wishes, John

Hi John,Glad to hear P’s morphine is working better in pill form.It is good that he has you to look after him.It helps so much to have someone supportive.Thanks for your good wishes,hopefully I will pick up soon.Best wishes to you both Jane 

Hi Johnsn. I am new to this forum. I am also a carer and going through similar experience with my husband.  I know that my husband takes slow release morphine as well as oral morph because the cancer has spread into his bones. He is currently having radiotherapy and is still in pain. He also has gabapentin and other anti inflammatory drugs. You can your GP to refer him to palliative team who are amazing. They sorted out pain relief in the hospital and are visiting my husband. Hope this helps. 

I really understand how tough this is for you ..wishing you all the best

I'm so sorry that your husband is still experiencing pain and I hope that palliative care team are able to sort this out when they visit. P. found the hospital very responsive, and he has continued on even keel since I last posted nine days ago. This has been such a relief. Besides the slow-release morphine in pills, he also has the oral morphine in case of need. Now he has a contact with the palliative care team so he also feels that he has somewhere to turn. Thinking of you and wishing you every success with your husband's pain relief and treatment, John

Thank you for your kind supportive words. I am so glad that your husband is getting on better with his pain relief. I feel like I am going on a downward spiral in myself. I can't sleep at night worrying. I feel I am being selfish because my husband is in pain but it seems like I can't see any light at the end of the tunnel...I can't imagine life without him. He is only 45 and when I look at my youngest and think how is he going to cope...sorry just feel so helpless..

I don't think, personally, that you are being selfish. I do hope you can find more support. I would suggest it is worth contacting your local Carers' Association if you haven't already done so. You are entitled to a free Carer's Assessment which will signpost you to whatever is available for you. Also talk to the MacMillan helpline, they will know who can support you at this extremely challenging time. I believe there are other forum groups too for carers and for terminally ill people. Many local Hospices also offer support to children of cancer patients as well as the patient and their partner.

Sending thoughts of support, 

Denby