Hi all,
My mum (80 y/o) has been living with PPMS for the last 30+ years. In the last 10 years she became totally reliant on my dad who cared for her, and is now entirely in a wheelchair. Sadly my dad died 2.5 years ago, and since then my mum has been living in a care home. They are good but don’t really understand about MS. Mum has always been good about her exercises and things but her eyesight has deteriorated, as has her coordination, although she has been able to use her motorised chair well enough to get around the home. And of course ambient temperature and the constant fatigue that she suffers.
Earlier this year her mobility took a turn for the worse almost overnight and she could no longer get between chair and wheelchair, or get to the toilet herself, which was a big thing for her.
A couple of months ago she found a lump which has been diagnosed as breast cancer. The biopsy a month or so ago seems to have been a massive event and the constant fatigue and tiredness is relentless. Since this time she has been spending a lot of time in bed - getting out requires two carers and a lift, although they are making hte effort to make sure she gets out to the dining room etc. so that she’s not just rotting in bed. She often seems vague and short of words, although she brightens up if I am there or I call (sadly I live 3 hours away).
She is on hormone blockers and has a phone consultation with the anaesthetist tomorrow which is on order to work out whether they think surgery is an option. Medically it would be the best thing to do, but the worry is whether she is strong enough for the operation. I am also concerned about how recovery will be after a mastectomy given that she has been on antibiotics after the biopsy which they have been worried about becoming infected.
I am sorry for all the background but I am so frustrated at the lack of joined up thinking - there’s no holistic approach. The cancer people don’t seem to know anything about MS, and she’s not had any support from anybody on the MS (in fact nothing really since she was diagnosed in the late 90s, but that’s another story). I’ve no idea whether any of this is normal, or what I should be doing. I am worried about the massive downturn since the biopsy, as she was in a much better state before this.
I’m not sure why I am posting this really, but if anybody has any similar experience or useful resources, or even can agree with the symptoms then that would be helpful. I just want to know how best I can help her or what I should be pushing for. I think if the surgery doesn’t happen then radiotherapy is an option but having been through that with my wife I really don’t know how we will organise that…
Please excuse the stream of consciousness post!