14 months after Breast mets diagnosis

It's been a tough 14 months for Mum. She did have a couple of stable scan results which was lovely to hear. It turns out the body scans were only being done from the neck down as no other symptoms to warrant full body scan until Mum's eye started to close up and lose her sight. This was upsetting, took a few months to find her Breast Mets had spread to her face and then into meningial lining of her brain, she's had Radiotherapy a few months back now in the hope it stops the spread to her other eye but nothing can be done in her brain, it's also gone to Mum's lung now. It's tough for her. She's had several different doses of steroids and each time they work amazingly well, we get Mum back for the duration of each course, she eats and we can get her out of bed it's lovely. She chats like her old self. Just had a great couple of days with her, took her outside to walk round her garden to see her flowers, she has a beautiful sea view and she sat out for about an hour and really enjoyed seeing her grandchildren. It was lovely. Not on steroids she can't get out of bed, she's sick and has a fuzzy head is how she describes it. She's having anti sickness jabs when needed and a steroid jab in her side that gives her pain that really helps. Together they work well. Mum has this dose of steroid for 1 more week I am filled with dread as to what will happen in a weeks time. The Palliative care have now put in a Red medical bag with security tags but not explained anything to us about it. I read the paperwork so know it contains the syringe driver and it says which drugs are in there so I googled everything.

I know Mum doesn't want to know but surely we should have it explained to us what happens next, it must be very difficult for the care team when a patient doesn't want to talk about things but as her family surely we should know the plan going forward. I live 3 hours away so have asked to be kept up to date, very frustrating and of course I'm aware we are really on borrowed time it's absolutely amazing Mum is here fighting this as best she can with all the knock backs she's had. I just had to get my thoughts out and down on paper. Thank you for reading my Mum's journey so far. 

  • Hello Challenge,

    It's lovely to hear that you and your mum are having good times together and I hope getting your thoughts down has helped in some way. It's a good idea to speak to your mum's care team about your frustrations, I'm sure they'll be able to answer your questions and keep you up to date like they should. If you need to speak someone our team of nurses are available on the freephone 0808 800 4040. Lines are open from Monday to Friday between 9am and 5pm.

    Best wishes,

    Moderator Anastasia

  • Thank you for your reply. Definitely helped writing it down and I did exactly what you suggested yesterday and spoke to Mums palliative care team, we now have a lovely lady keeping us updated and explained everything we needed to know. You do need to find the right person and if not happy please let them know. I feel going forward we will be better informed. The steroids are continuing until the next scan results. Despite the risks the steroids provide quality of life for Mum which is lovely to see.