Hi, just needing a bit of advice, support, experience. My mum was given a new diagnosis of leptomeningeal disease about 16 months after being told she had breast cancer metasteses which couldn't be cured only managed. I live far from her, but spent a week with her week before last and due to visit again this weekend. She's deteriorated quickly, package of care in place now (but she won't let/ask the carers to do anything for her), hospital bed put in when I was home last. My brother lives closer to her, so I'd providing lots of care and support to her.
Palliative care team have spoken about a short hospice stay to get symptoms under control (mostly continence related) but nothing organised yet.
I guess I'm just wondering if anyone has experience of leptomeningeal disease?
Relieved to have found this forum xx
Hi Lal123 and a warm welcome to the Macmillan Community but so sorry to hear about your mum.
A cancer diagnosis in the family like this can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot……. I have a completely different type of cancer and treatment journey.
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Do get back to me if you need further help navigating the community.
