I am an employer and one of my employees has recently been diagnosed. His treatment will require a Stoma bag and he is adamant he does not want the operation. He lives alone, has no real support network. I has not attended one appointment and is reluctantly going to the next. I have offered to go to hospital with him and to put him in touch with someone who I know has had a similar operation. He has made his mind up he does not want the stoma treatment. What else can I do to support this valued member of staff?
Hi DAH72 and welcome to the Macmillan community.
What a difficult situation you’ve found yourself in-I can see how much you want to help and support your colleague, and it must be hard to see this person not want to undergo surgery.
In my situation, I was the patient, and I’m in the group because I have had two stomas formed during surgery for my cancer. One of the overriding feelings when faced with something like this is fear, so your colleague might simply be scared of what would happen, especially if they do not have a good support network.
I know when my surgery was mentioned the first time, my instinct was to say no-there’s no way I’m doing that! It took some time to adjust my thinking, but I’m very glad I was able to.
Does your colleague have a CNS allocated? This is a cancer specialist nurse who is usually a very good source of advice and support. Would they be prepared to talk to the nurse to have everything explained? Sometimes we haven’t been given enough information at the start, and often we don’t take everything in due to information overload! The nurse acts as a conduit between patient and consultant/surgeon, so I had one to chat to and also had consultant appointments to have everything explained to me.
Sometimes having more information can help reduce the fear. Your colleague can of course choose not to have the surgery, but they should have a fully informed discussion with their consultant before coming to this decision. They would need to be aware of the consequences of refusing surgery, and what that might mean for progression of the cancer.
Many of us, me included, live very well after stoma surgery-yes, it’s a lifestyle change, but it’s completely manageable to live with stomas. If you could encourage a discussion between your colleague and the person you know who is living with a stoma, that could be very helpful so I’d encourage that if you can. I found it really helpful to meet up with some ladies in real life who had gone through the same surgery I was facing, and I could see how well they were coping. That gave me extra confidence.
Would your colleague consider joining the Macmillan community here? It lets you “meet” people in the same situation as yourself and there is a huge benefit in sharing experience with others who understand.
It can be difficult to accept someone’s decision when it is different to the one we think we would make, but it’s a very personal decision and I think you’ll need to respect it if they don’t wish to go ahead. The best thing you can do is let the person know you are there for them, to chat to without judgement and allow them to express how they feel. Try to reassure them that support should be put in place if the surgery is done, and there is help available at home. The hospital should not discharge them without a care plan in place.
Good luck, and I hope some other members will come along and reply if they have any advice to give you.
Sarah xx
