Hi all, I really hope you’re all doing well
I am hoping to speak with someone in a similar situation, my mother was diagnosed 3 years ago with a rare and aggressive type of melanoma and within the past month it’s unfortunately spread even after her operations and care and she is now at stage 4 with it now having lesions on her lungs, liver and spine. She’s is now ongoing treatment.
she struggles greatly with pain and I want nothing more then to help her, I help clean her house and look after her when I can. If anyone is going through something similar I would love to talk as I feel so alone knowing my mum who is my best friend is going through this and I’m not able to control it or cure it. I have some amazing friends around me, helping me through this however it would be nice to be able to relate to someone, get advice or even just have someone to cry too
Hi Charlie011 and welcome to the vulval group.
I really feel for you being in such a difficult situation with your mum. I think it might be hard to find anyone in this particular group who will be in the same situation as yourself, but there are certainly other groups which it might be helpful for you to join which focus on caring and supporting someone with cancer.
Vulval melanoma is rare, as is the vaginal melanoma you told us was your mum’s original diagnosis, but I think what you’re looking for is help from others who are having a similar experience in general, rather than a focus on discussing the actual cancer itself.
I’m going to give you a couple of links here for groups you could join in the same way you have joined this one-
Supporting Someone With Incurable Cancer Forum
In these groups people are supporting another person with cancer, and this could be all sorts of different cancer types. But the challenges of giving this support are the same, regardless of the cancer. It sounds like you need to speak to others who can understand what this is like for you and these are safe places to say how you feel and are coping.
I’ve been the patient, not the carer, but I could see how much my cancer affected my partner and how exhausting and scary it was for them. I think it would help you be able to connect with others in the same kind of situation.
Speaking about practical stuff, are you getting any professional help and support with your mum? For example is palliative care services involved in her care? They could be managing her pain for example. Have you been able to discuss her ongoing pain with her doctors, as I see from your post she is still undergoing treatment?
Has your mum had an assessment of her needs done by social services? As a carer you can also have a needs assessment done for yourself to see what help you need, because you are important in this situation too. This is done by social services, who visit your home so if these things haven’t happened yet, I’d encourage you to call up your council (assuming you are in the UK).
This may all be quite overwhelming for you, and it will be very difficult to see your mum in pain and feel unable to sort it out. I’d really recommend you call the Macmillan support line this morning-the number is in my signature- and they will be able to direct you to the kind of help you need from external agencies. They are very kind and helpful, and you don’t need to be the patient to call them for advice.
I appreciate that I am not in your situation, so I hope you don’t mind me replying to you here. I have gone through looking after my own mum with stage 4 cancer and it was a very lonely place to be, and very frightening. So my heart goes out to you and what you are going through, and I couldn’t go by your post without replying. I’m glad you have supportive friends, which will be invaluable for you, but sometimes you just need some extra help to keep going, and I hope you can get that.
Sarah xx
