I'm losing it. My partner ia due for his oncology meeting Monday. He's had a brain flap removed. Has 2 incurable grade4 glioblastomas. He had severe infection and was taken off treatment till it got sorted. Has had numerous issues with csf fluid leakage. Today he had 4 tonic clinic seizures. And has csf fluid leaking again. He had a aunt fitted at the beginning of Jan. I'm scared. I'm lost. I can't help him. We had to mo e our wedding from 7th Jan cause he was inn hospital. We're due to marry next week instead. I need someone to to to and I feel alone
Madge I can’t begin to know how you’re feeling right now, this is so unfair and awful. I lost my Dad to this nightmare disease 6 years ago now, and was his primary/only carer. He also had a shunt and had tonic clonic seizures that were really scary and took a lot out of him. The thing that I get most comfort from was knowing that I did my best, everything that I could do for him, but it’s not easy and I remember what providing that care was like. Macmillan were brilliant when dad was in hospital. I’d always make sure that they know he’s there if he’s admitted.
and a warm welcome to the group. Let's start with something simple - you're not losing it. Everyone involved in a Glioblastoma diagnosis goes through a roller coaster of emotions. It is scary. I can feel overwhelming but, you know what, it's normal so don't be too hard on yourself here. It sounds as though you've had a huge amount to take on board recently.
I'm sorry to hear about all that you and your partner have been through. I hope the oncology meeting goes smoothly. Can I suggest that ahead of that meeting that you write down all your questions, no matter how trivial they may feel, and take those notes with you? These meetings can be emotional and overwhelming so your notes will ensure you've a checklist in front of you. it might also help to keep things in focus,
My husband was diagnosed with a grade 4 GBM in Sept 2020 so I can totally empathise with how scary it is and how lost you feel at times. It was those feelings that made me reach out to this community. Friends and family are great but they don't always "get it". On here and on the Brain cancer forum - Macmillan Online Community and Carers only forum - Macmillan Online Community there's always someone around to listen, to offer some words of wisdom and a virtual hug when its needed.
It’s always good to talk so remember you can alsocall 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.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
I hope today is an easier day for you and that your partner has a more stable day. Seeing them ill and distressed is upsetting for everyone. My husband had one bad seizure a couple of days before his surgery while on a video call to his boss. It was one of the scariest things I've ever seen and his poor boss got the shock of his life (Don't think the man will ever get over seeing that).
Please take time to take care of yourself too. I know it sounds selfish but taking some "me time" is essential here to let you recharge your batteries a wee bit. Even if its just 10 minutes with a coffee and a book, or a walk round the block, please try to take some time to do something you enjoy. I've also found journaling helps too. Seeing the words written down makes them feel less scary. It's also a good way of getting it out of your system.
For now though, I'm sending you a huge virtual hug. You are doing so much better here than you think you are. This is tough to deal with. Stay strong. Stay positive.
love n hugs
Wee Me xx
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