Hi everyone, about 2 weeks ago we had the devastating news that my dad in his early 50’s has a large inoperable tumour in his brain stem. He presented no symptoms at all until his vision doubled and had a slight pins and needles feeling. This also means he is unable to drive which is such a big thing for him and he is much more withdrawn from life.
Coming from a tight unit of a family of me, my mum and dad, this is the most life changing moment of my life. We lost my sister to cancer a few years ago too when I was younger which I believe is why we have such strength as a three now. I am reeling from this news still and I can’t believe life can do this so many times to people who love each other so dearly.
I’m scared about dad, I’m equally as scared about how my mum will cope given everything she has been through already in her life, and I don’t know how to do the right things for all of us going forward. I know that life has changed now which is so hard to adjust to, but I need to know how I can do my best for both of my parents now.
I don’t have much more detail to share as dad still needs tests and a real consultation to understand what we’re dealing with (which is booked for over a month away, and another massive problem we’re dealing with).
This is just my post for any advice on how to cope moving forward and how to best support my amazing parents. If anyone else feels this way too I feel like I am struggling to see beauty in the world right now and my heart can’t love the same at the moment as I know it can be taken away from you too easily. Any words of advice for the next few weeks and beyond would be greatly appreciated, thank you so much x
HI Leofox
a warm welcome to the group. So sorry to hear about all that your family are going through. Its too cruel.
My husband was 50 when he was diagnosed with a stage 4 brain tumour in Sept 2020. The diagnosis came out of the blue and rocked our family to the very core. (Our kids were 20 and 22 at the time). He had no obvious symptoms either. He'd had a funny turn out running where he realised he didn't know the words for things and couldn't read. Behind my back, he went to an online gp who referred him to the local private hospital who saw something on a scan and referred him to the local NHS neurological unit. He came clean and told me the day of his appt there. They were able to operate to debulk his tumour and he had 6 weeks of oral chemo/radiotherapy then said he didn't want anymore treatment after that. A decision I had to respect. Physically he's still doing really well. Mentally less so- he's a bit like a dementia patient as the tumour impacted the area of his brain that controls speech/language and understanding.
Losing his driving license and having to sell his beloved BMW were among the bitterest pills he's had to swallow. He lived for his car, his job and his running. Fortunately he can still run.
These first few weeks are the scariest. Not knowing what is really going on is far harder to cope with than knowing the hard facts so I can empathise with where you are at here. Try not to Google - easier said than done but you'll scare the life out of yourself. Try to focus on what you know and not the what ifs.
There's no right or wrong way to feel. I've been through every emotion in the book over the past 22 months. We're emotional beings so its ok to be angry, upset and scared. Showing your emotions shows you are coping (I suspect you won't believe me but you are ) and its those who bottle them up that struggle more. Be led by what your dad wants and needs and your mum too. If they need space, give them it. If they need you to be together then be there as much as you can.
In the midst of all this you need to take care of yourself too. Taking time to do the things you enjoy is ok. You need to take time to process all of this and its not selfish to do so. It's necessary so that you are in a better space to offer your support to your dad.
This group is a really safe supportive space so please reach out anytime . There's always someone around to listen, to hold your hand and to offer a virtual hug when its needed. You're not alone.
It’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - 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. If it feels appropriate, remind tour mum and dad that they can reach out too.
For now, I'm sending you a huge virtual hug. Stay strong. Breathe. You are coping so much better than you give yourself credit for. (You'll just need to trust me on that.)
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
