Hi Helen

So sorry you are going through this with your mum it's such an unpredictable journey, so hard to watch your loved one going through this and trying to cope yourself too.  Sadly my dad passed away end of January five months after his first diagnosis of brain mets from lung cancer, both discovered ( out of the blue) at the same time in August last year.  His prognosis was terminal with possible reduction of symptoms with chemotherapy/immunotherapy and later radiotherapy,  life expectancy was predicted at anything from weeks up to a year depending on his response to those treatments. Steroids kept the brain swelling at bay for some time but the side effects of the steroids increased rapidly as time went on. Chemo reduced the lung cancer a little but didn't help the brain mets. The brain tumour caused all his symptoms.such as reduced mobility, confusion, emotional changes, language and writing difficulty and later the gradual loss of most bodily functions.  Radiotherapy was offered just before Christmas as a last hope of giving him some more time, we knew it wasn't the right decision for him as he was deteriorating by this point and the radiotherapy causes more swelling in the brain which worsens symptoms. Understandably he needed the hope and wanted to go ahead but symptoms became rapidly worse (over a matter of days) and he only survived the radiotherapy sessions by a few days.  We managed to keep dad at home with us right to the end with the amazing help of Macmillan nurses and district nurses.  I was devastated to lose him after those months of battling so hard and miss him more than words can say. 

I really hope you are getting lots of support looking after your mum. Take every day as it comes,  it is so unpredictable.  Of course I am happy to answer any questions you have, everyone's experience is different but it does help to share the journey with someone who has been through it too. Thinking of you X

I'm so sorry Tjay, 

I lost my dad 11 years ago so if I can help with your grieving journey please lean on me. I remember feeling desperate to talk to someone who had lost a parent so they could tell me I would feel better one day. The only person who could tell me was a taxi driver and he told me his dad died 22 years ago and he still had a hole in his heart and that just left me feeling terrified I would feel that way forever. But after a while the tears became a lump in my throat and then it started to get easier and I now laugh about my memories with dad and remember all our good times. I still have a wobble every now and then. 

I have so many questions. I'm living with mum now and my family are taking second place. My children are 6 and 8 and they do come and stay and the cuddles feel amazing. They are so loving to Granny/mum. 

When the brain met was discovered can you remember what size it was? 

I sleep in mums room every night and have been now for 11 days. I'd like a night off to go and sleep in my own house with everyone however I'm terrified if I take a night off my mum will die. As you say every journey is different. Mum was told she had 18 months left and that was 30 months ago so she is proving them wrong. We were told weeks 3 weeks ago but she is still able to stand up and I can then move her on to the wheeling machine to get her to the bathroom. Tonight she sat with us for 4 hours. She keeps her eyes closed but she smiles at our jokes and will answer when spoken to. 

What did the steroids do? Mum came home on 8mg and I now have her down to 4mg as the doctors told me it is hard on muscle wasting. But then the oncologist said at this point keep her on a high dose because really it doesn't matter. 

She has no symptoms. No headaches, no nausea, no siezures. I am so confused. 

Thank you for helping me on this bloody awful journey.

Helen x