Hi - I’m new to this group and looking for some advice. My dad has terminal pancreatic cancer and in May my mum (who was looking after him) was diagnosed with a glioblastoma and given up to 6 months. Things seem to be getting worse very quickly for her. She’s on 8mg of steroids per day but this seems to be affecting her hip arthritis, to the point where she can only walk very slowly with a frame, but only paracetamol has been suggested for this. The main symptom for her was speech, and that seems to be getting worse very rapidly. She’s also become very angry and unkind to my dad, who is trying to do all the shopping and cooking despite being ill himself. I have siblings but we all live hours away and work full time and have young children so while we’re doing our best to visit we can’t go all the time. So my question is really what help can we be asking for and from who? They have been put in touch with a hospice but the main offer so far has been cake on a Thursday which isn’t what they need. They also said that help would be available with washing/dressing but they’re not there yet. Does anyone have any advice or experience of a helpful service that could support them emotionally and practically? They’re both able to get up and get dressed and make a meal, and my dad is still driving, so they don’t necessarily need help with cooking and shopping- to be honest I’m not sure exactly what they need but it feels like they really need something! Many thanks.
Hi Louise
a warm welcome to the group. So sorry to hear about all that's going on with your mum and dad. Life's too cruel.
I'm supporting my husband through his GBM journey so can empathise with where you are at. His main symptoms are all cognitive and speech related. It feels more like dementia than cancer most days.
From experience with G, steroids can make the person very irritable. The GBM tumour itself can also cause personality changes so my first suggestion would be to talk to her CNS or oncology team and let them know about your concerns.
With regards to the day-to-day issues, have you spoken to their GP? That would be my first port of call. When we were passed into the palliative care phase of this journey at the end of February our GP put us in touch with the community nursing team and the local hospice. We're not at the stage of needing nursing care yet but the community nurses call to check in weekly and the ANP from the hospice connects with me weekly. Might be worth asking your local hospice if they offer any counselling that might support your folks here.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
Another avenue to explore is Maggie's – everyone's home of cancer care (maggies.org). There may be a Maggie's centre local to them that could offer some support.
This group is a safe and supportive space so I'm sure some of the other members will be along with their suggestions shortly.
Please also make sure that you are getting the support you need here too. That's a lot you have going on and this all takes it toll. Please make sure that you are taking time to recharge your own wee batteries here too.
For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
