Hello, well it’s taken me a little bit of time to get my head around this new journey I find myself on because I’m struggling And I wanted to reach out to see if 5here is anyone going through anything similar or who maybe understands any of what i am feeling.
I have been that my tumour is extensive aggressive treatable but not cureable. My initial treat plan was for a robot guided punch biopsy (one) biopsy followed by 6 weeks of radiotherapy then 6 months of chemotherapy. Immediately after leaving hospital following the biopsy I was read titled to a different hospital with bilateral double pneumonia. After being oxygen dependent for 19 days & treated with IV antibiotics I was finally discharged home. IV antibiotics I was finally discharged home.
cancer treatment plan anended to just aggressive daily radiotherapy for 6 week's until lung function recovers, review in 6 weeks then consider introduction of 6 months chemotherapy if not continue with second round of daily radiology..if not continue with second round of daily radiotherapy
Wpwhat I’m findin so hard to dead with is the changes in my - all my life I’ve been a do-er p, capable, considered myself resilient and a problem solver & now I feel like I’m this helpless wreck with the cognitive ability of a jelly fish! I don’t recognise myself I can’t function in the world & I can’t make myself see a point when that will change & I feel so desperately despondent.
Hi BourtonCuddles
a warm welcome to the online community. So sorry to hear about all that you're going through. Life's cruel.
I supported my late husband through his three GBM journey so can empathise with what you are going through. (The gist of our tale is in my bio- I won't bore you with it here)
Your reference to jelly fish made me smile. G used to refer to his jelly brain. He too suffered a significant cognitive impact early in his journey. His initial tumour was in the area of the brain that controls speech and language and understanding. He very quickly lost the ability to read which was one of the harder things for him to adjust to. He was a fitness freak (marathon runner) so his primary way of coping was to exercise. it was the key important thing from "life before" that he could focus on and focus on it he did!
Have you spoken to your medical team about how you are feeling? I'd encourage you to be open and honest with them. Please don't be too harsh on yourself here for struggling to process all that you've been through. That's a huge amount for anyone to cope with and it takes time to come to terms with the hand that's been dealt here. If its not already been offered perhaps it might be an idea to consider some counselling. Even talking everything over with a friend can help.
This is a safe and supportive space so I am sure some of the others will be along shortly to share their words of wisdom and encouragement with you. There's always someone about here to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also 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.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
