Hi all,
This is my first post and it's all very alien to me (despite having a mental health background and now work for a charity supporting people post Stroke)
My mum has Bowel cancer that has invaded her bladder (she never had any bowel symptoms, it was only discovered when she had UTI like symptoms. Long story short and a multitude of cock-ups and delays mum is now in a hospice receiving Palliative care. It went from oh this can be sorted by surgery (back in Nov) to no actual treatment just months of scans and tests, to me having to take her to A&E where they discovered a fistual from her bowel to bladder and she's been so unwell since. I just feel really in the dark about things, mum has had no support whatsoever (I asked her GP for a Macmillan referral, nothing) no cancer nurses at the hospital, not even a leaflet on cancer. And now we are visiting her in a hospice. I want to be strong for the rest of the family as they rely on me with my slight medical knowledge but I feel so in the dark. None of the clinicians seem to say anything, she's had no support trying to get finances in place, it just seems like such a mess!!
I wonder if anyone else has had similar experiences? I know the NHS is on its knees and all the actual medical staff have been lovely. I also know it won't change things, I'm just trying to make sense of it all.
Feels good to just get it off my chest!
Hi xriax37 and welcome to the Online Community but so sorry to hear about your mum’s diagnosis and the journey you are all on.
A cancer diagnosis like this in the family can be such a challenging and stressful time but I do hope you will find the Community a safe place to get support from family members who are navigating the ‘exact’ same journey.
I notice that you have found out that the Community is actually divided into support groups (discussion rooms) and I see that you have put up a reply to a post in our Carers only support group. You may also want have a look at our Supporting someone with incurable cancer support group….. these groups help you connect with others navigating the exact same support challenges.
The best way to connect and get your questions answered is to put up your own discussion threads. You can can do this by going into the group then clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Supporting someone you love on their cancer journey can be very hard so you may find it helpful to look at this information on your feelings when someone has cancer and especially this section on looking after yourself. If you're starting to struggle then it would be a good idea to have a chat with your GP.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.
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 aim to give support to all the family.
Please do get back to me if you need further help.
