Hi all,
My mum was diagnosed with vulva cancer 2 weeks ago, we are back to the hospital on 19th October to discuss what treatment is available.
I'm so worried as she had a stroke 5 years ago and is paralysed right side, she has speech and communication difficulties
She is double incontinence I'm really concerned she won't be able to have surgery because of the incontinence and risk of infection is already increased.
I spoke to the nurse regarding this but they couldn't give me much advice but to address this at her appointment.
Mum is completely bed bound , she knows what is going on and at moment is telling me she doesn't want and treatment at all and just to be comfortable.
I won't go against her wishes im so scared. She is going to say no to everything as she is so uncomfortable in and out of bed.
She has no muscle tone what so ever, 2 hours in a wheelchair and she is crying in pain.
Any advice how to talk to her about this all as all I get is no to everything at moment
Hi Jane d and welcome to the group.
I’m very sorry to read about your mum and the difficulties you are both facing. I’m presuming that you will be going to the appointment with her, which will be difficult in itself with her not being mobile, but maybe she could let you speak directly to the consultant?
I’d suggest making a note in advance of the questions you’d like to ask, and bringing them with you-often there is a lot to take in at these appointments and it’s easy to forget things. If you are not sure of anything, ask them to repeat it and explain in simple terms-sometimes they forget that patients don’t always understand medical jargon!
The consultant will be looking at the best form of treatment for your mum, but this will have to take account of her current situation. Maybe your mum will change her mind once she has had the treatment explained to her. If she chooses not to go ahead with any treatment I appreciate that might be hard for you to hear, but we all have the right to refuse to be treated. It would be important for your mum to understand what the consequences of that might be, and the consultant will explain this.
Have you got support for yourself too in all of this? If you are caring for your mum, then that’s a really hard role and I hope you’ve got the help of family and friends. If you are her carer, then there is a group within the community specifically for carers where you can connect with others and get support and advice. If you click on this link I have made, it will take you right there-
People in this group are caring for others with all sorts of different cancers, but their emotional issues will be the same and it might help to see you are not alone.
Please keep posting and you’ll get a lot of help from this friendly and supportive community. I hope you’ll let us know how the appointment goes and if we can try to help any further.
Sarah xx
Gosh Jane d you do have a lot going on with your own family responsibilities. I’m glad you’ve got good family support as you will need it going forward especially, and it’s a lot to try and cope with on your own.
It’s difficult when you’re experiencing cancer in the family again after losing your Nan-I lost both my parents to cancer but never compared it to my own situation as every cancer is different, and every individual is unique. I think most of us have had our lives touched by cancer in some way, but treatments have come on in leaps and bounds over the years, giving us many more options than were available even a few years ago.
I’m glad your mum is smiling and happy, and from that presume she is not suffering any pain from her cancer which is a good thing.
Keep on doing what you’re doing and reach out for help whenever you need it.
Sarah xx
