Hello Everyone,
I’m on here because my mum has been diagnosed with Myeloma Cancer and I just don’t know which way to turn to try and get her the right support she needs. She had a spinal tumour and now needs to wear a full body brace when she is out of bed. No one seems to know how long she’ll need to wear it, no one is giving her any occupational therapy, she has missed chemotherapy appointments because no one is booking her transport and she is living in a community hospital. None of the nursing staff are making the effort to get her up and out of bed and rehabilitating her so she can return home to independent living again. Because of the body brace and how weak she is, she will need assistance if she returns home and her flat will need adaptations but we have no idea who to approach to get this done. Can anyone help me with advice please as it’s breaking my heart to see her so upset and crying every night as she feels abandoned. I unfortunately don’t live near to her and she is on her own.
Hi Robert684 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like your mum is having a very difficult time at the moment and I can understand why you want to connect with others who may be able to share their experiences with you.
As the online community is divided into different support forums I'm going to recommend that you join the myeloma forum, which is a great place to ask questions and share experiences with others who have a similar diagnosis to your mum, and also the family and friends forum where you can ask others how they have arranged help.
To join, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your mum's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
