My lovely mum was diagnosed with stage 4a lung cancer in Feb 2022. She was lucky in that she had ‘non-smokers’ lung cancer, which could be treated using a TKI in the form of one pill daily. Last October she suddenly showed stroke symptoms, which turned out to be a mass on her brain. Her lung oncologist assumed metastasis but when we went to see the neuro-oncologist they said they thought it was potentially a second primary, a high grade glioma.
Unfortunately due to the effects of the TKI on her heart she was considered not well enough for biopsy, and so the brain tumour is unable to be treated (as unknown if secondary or primary) and she was sent home for palliative care at the beginning of December.
I’m an only child and my dad died last summer. I have two young kids myself, and am finding being her carer so tough. I live 50 miles away and am splitting being with her 24/7 with her two sisters, but neglecting my own young family is proving unavoidable.
She can’t be on her own as her mobility has been seriously impacted by the brain tumour, she is extremely forgetful and unable to prepare food herself. She can’t get to the bathroom unaided. She is desperate to die at home. We had discussed hospice if her symptoms got unmanageable which was a relief, but when I mentioned it together she had no recollection and looked horrified at the thought.
I guess I just really need to vent. I of course do not want my mum to die. But the situation is so difficult, she isn’t the person she was at all, and we aren’t getting any support other than a daily carer visit at 10am.
How do I get through these next few weeks/months? If I knew it would be a matter of weeks I wouldn’t consider hospice and just plough on, but nobody is able to give a prognosis (or they’re reluctant to because of the unknowns) and the uncertainty is overwhelming. I hate myself because I read of others quick declines and think how merciful they seem in comparison to our situation.
Hi Hmpat
Sorry to read about your mum and totally get your feelings about being pulled between your mum and your family. Also get the bit about wanting your mum to be out of her suffering but balanced between not wanting her to die - it is a really difficult position we ever find ourselves in - I was there with my dad and my wife similar with hers.
I have seen lots of people on here get a prognosis, sometimes it might seem some people almost die to order but many outlive theirs and of course in some cases people die early and often their loved ones feel like they have been robbed - they can very much be a mixed blessing and of course once spoken cannot really be forgotten.
How are your children coping? It can be a really difficult time for them and we have advice on talking to children that might be helpful. Our son is all too familiar with the oncology department with my wife and we got great support from his school too.
I find some help in looking at your feelings when someone has cancer in recognizing the feelings as normal and valid can help make them feel less overwhelming.
<<hugs>>
Steve
