I was diagnosed March 2025, post lumpectomy/snb, zoladex, tamoxifen, 4/16 into radiotherapy & zometa to start Sept.
In response to me being diagnosed, my sister (15mths older) thought she should really check herself for first time, found a lump & 2mths on from the whole suite of tests we’ve had confirmation that it hasn’t spread but Dr wants smx & lymph nodes clearance.
My issue is that my sister has learning difficulties, still stays at home with my elderly parents. She doesn’t really understand what’s happening unless its spelt out to her. Our mum suffers from severe anxiety and is currently of no help/support. Ive been trying to attend all her appointments as her appropriate adult but I’m in active treatment too.
At yesterday’s apt, i asked the nurse about support for my sis for attending apts if im unavailable & folks unable but didn’t get anything clear.
Can anyone advise best place(s) to go? I suggested to my folks they walk into the Maggies Centre & just ask for help but they’re quite reluctant (& I haven’t had the time to yet)
Sorry for the ramble and well done for getting this far!
Much love
X
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Hello, so sorry to hear your situation. I found it really hard attending my 80 year old Mums appointments, and I was a long way out of my treatment. So I really feel for you. The hospital should have a nurse for adult learning difficulties, so tracking them down to help for advice could help. Also, would your sister and parents consider a referral to adult social care ? They would undertake a family assessment and see what support is needed. They may well be able to provide other opportunities for your sister, socialising etc which may be difficult now your parents are getting older. Might be worth having a chat with your local team. Best wishes for both your recoveries.
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Hello @cujo4498
I am so sorry to read what is happening to you and your sister.
When I was having chemo there was a young man with a learning difficulty having chemo at the same time. I asked the nurse if he had any specialist support and she said that he did but didn’t say where it came from.
I wonder if Macmillan or breast cancer now might be able to point you in the right direction? Worth giving them both a call. Also your sister’s GP might be able to help.
Wishing you both all the best. Xx
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Thank you! I’ll ask about the special Adult Learning difficulties nurse. My dad is active/mobile & currently classed as her carer so I’ll make sure he updates Adult Social Care to see if they’ve extra support they can offer.
Thanks again xx
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Thank you! Will definitely be trying to give them a call when i can x
We have a Learning Disabilities Liason service in my hospital / Trust . For elective surgery every patient with LD is assessed by them prior to admission and given their own passport which is made available for the Theatre staff and ward staff who are going to be looking after them to read beforehand . It details their likes / dislikes how they communicate and level of understanding as well as dietary needs / medical history etc. We also allow a designated carer to come into the Anaesthetic room and stay until the patient is asleep and to be with them in Recovery / PACU afterwards . If they are staying overnight in hospital some LD patients will have a career that they are familiar with present with them 24/7 . I’m so sorry that you both have been diagnosed - perhaps at least your experience will be some help to her. The Maggie’s Centre is a good idea as well if there is one near you . Xx
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