Hi all,
New to the forum and sending best wishes to all of you battling this horrific illness.
My parent has been diagnosed with Brain Metastasis 3 months ago. There has been CT/MRI/Pet scans and a month ago talk of surgery to try and remove some cancer from the brain, we have heard nothing now in a month.
Apart from these tests we have had no updates, no hospital treatment has been given only oral medications and steroids.
You then go to websites, google etc and the prognosis for this does not sound positive.
I am wondering if this is normal, the wait, the lack of communication and appointments or.... could it be that my Parent has been receiving updates and news and does not want to burden us with the diagnosis/prognosis? We want to support but maybe they don't want to worry us or don't want to carry our burdens but I am so afraid that its months to live and we don't know.
We are concerned that we are not in the loop and I fully appreciate someone's rights to privacy but with a Brain Cancer, mental health and capacity can change so quickly and I am concerned we are not here to support and not in the full picture.
Has anyone experienced anything similar?
Is there anywhere we can go for medical updates if Parent wont give them?
Is there anyone who we need to contact at our local hospital who may be able to help?
Any comments appreciated.
Hi Buzz Bee
a warm welcome to the group. So sorry to hear about what you're going through with your parent.
It's hard to know how to reply here to be honest.
I'm supporting my husband through his stage 4 brain tumour journey and I have encountered similar issues with him trying to exclude me from appointments I should have been present at and blocking me from getting the proper medical updates. We were given various levels of advice. The first was to put a power of attorney in place that covered welfare. If your parent will consent to that then that's one way of getting updates. I was also advised "off the record" by an oncology nurse to report my concerns in writing to my husband's CNS suggesting that I was also concerned that he was being put at risk by pertinent information being withheld from the family. That worked to an extent at the time. You also talk to your parent's GP and express your concerns and see what support they can offer.
It's a minefield and one I still tip toe through on a more or less daily/weekly basis. My husband did eventually give verbal consent to our hospice nurse and community nurse for them to speak to me and that has been a Godsend.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 for further guidance here - 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.
I wish I could offer more help. I get that its frustrating and scary not knowing what's going on. Your parent may feel that they are protecting you by not telling you so don't be too hard on them here either. It's a scary time for all involved.
I hope you get some support here. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
