So here I am.. I’ve im med and Ahhhed about joining a forum but here I am.
my mum was diagnosed with cancer lung spread to nodes last oct she was given a few months. Then suddenly in nov she had a crisis and at the time we were told by the rapid response and community nurses that she had days. I moved in and did all you do in those situations. Roll on a month and she was still with us improving in fact.
So they provided carers (this is a whole other story) let’s just say it was diabolical and awful care. She steadily improved enough to basically say she didn’t want the carers anymore. She is bedbound mainly can shuffle to the loo and back. That’s it.
I stayed a little while longer but I just couldn’t stay anymore I had to go back home to my disabled child and animals and frankly to regain some sanity as I’d had no support at all during this time.
I continued to visit twice a week and she regained abilities to basically care for herself. And it remained this way until about three weeks ago. She declined again but this time there was no rapid care no nurse support nothing. I called the hospice and they said call the GP I called the GP and they said call adult social care. I called ASC an they said call nurses. Nurse said no we only do medical.
So one morning last week she had a little fall and called the nurses herself. The nurse helped her back to bed and said “well you’ll have to get a micro provider” told her to Google it. And left.
i can’t mentally cope with moving back there to do it all alone again I just can’t. Where do I turn? I’ve found some micro providers in the hope we can afford an hour a day or so. Why won’t any of the services provide what they say they will? The hospice said they won’t get involved until she is dying.. she IS dying!!! the fluid build up in legs/stomach ect point to last weeks.
im just so let down unsupported as is she.
mots worth stating that she refuses any treatments apart from pain relief ( and even this has been horrendous to get on time and have enough of)
sorry it’s long. Sorry if it breaks rules.
Hi Smallworld and a very warm welcome to the Macmillan Community but sorry to hear about your mum and the challenges you are dealing with.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot.
The New to Community 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 I do see that you have shrewdly joined our dedicated……
…… support group. This group is a safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for 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 and putting
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.
You may find it helpful to call the Macmillan Support Line open 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.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Do get back to me if you need further help navigating the community.
Hi again Smallworld it’s best to leave this thread as there is always a chance that someone looks at it and can respond to you with their first hand experiences or indeed your post can resonate with other new members….. all the very best as you navigate this challenging time ((hugs))
