My name is Carole. My partner Kristy has had brain cancer for 12 years. Three surgeries during that time. Our team in the Hunter is not prepared to operate on the new spread. So for now its oral Chemo and IV (new drug) and Hope.It would be good to
1. Know of any trials
2. Know of anyone prepared to operate
3. Any counselling support services out there available for the patient, and for the support (its a lonely road)
Hello
Very sorry to hear what you’re going through and all the best with the ongoing treatment.
I’m caring for my husband who has a high grade multi form glioblastoma which wasn’t suitable for treatment and he’s just reaching the end with possibly a couple of days left.
We recently discovered the Brain Tumour Support Charity. braintumoursupport.co.uk/
They are brilliant. They offer one to one support, a counselling service (there is a waiting list currently) and also online support groups for different grades of tumour for both the person with the tumour and family and friends supporting them. I’ve only attended one support group so far but it was such a relief to be in a space with others who understand the challenges and the advice from the group and from the one to one was excellent.
The group provided very practical tips like having the GP prescribe an antidepressant to help with low mood symptoms - it gave my husband a little uplift which meant he was better able to cope with everything.
The one to one support recommended an ACT (Acceptance and Commitment Therapy) approach and pointed us in the direction of resources for self led learning. These are not specific to brain tumours but I found it useful in managing my anxious fears and there were some useful tips and tricks which apply to life generally - you can just take what you need from it.
The ACT resources included:
1: A book - The Happiness Trap by Russ Harris
2: A quick online course phw.nhs.wales/services-and-...
I hope you may find that it suits you and send every good wish to you both.
