Hi, these stories sound very similar to mine. I’m 33yo, I had a few seizures/ grand mal seizure 3 months ago. Suspected grade 2 IDH astrocytoma size of small plum on my left lobe attached to my speech nerve. Im waiting for an awake craniotomy- no date yet. Has anyone any advice on how to survive the waiting! I’m a bank nurse myself and still work but have no kids so the waiting is long. I feel like I can’t plan past a few days. Still counting myself lucky compared to others I don’t take it for granted. Any advice welcome xxx
Hi Nurse2Patient
Welcome to the Online Community.
I am sorry that you have not yet had a response to your post but sometimes it can just take a little longer for someone to get back to you.
I am sorry to hear that you have had some seizures and a diagnosis of a suspected grade 2 IDH astrocytoma. I can understand that it is a worrying time and I know from my own cancer (endometrial) waiting around to find out results and waiting for surgery etc was always tough. I know what you mean about not being able to plan past a few days.
For me I found it best to try to keep to my normal routines, work, eat, sleep etc and although it was hard at times to do this- it did help. Also there was an element of going with the flow and accepting it is natural to feel as you do and sometimes there can be a huge range of emotions. The other thing that helped was because I knew I would need surgery I started to plan the practical things. I cleaned the house, did some shopping, cooked some meals to put in the freezer. Made arrangements for travelling to the hospital. Sorted out what I would take to hospital etc. I bought some new comfy clothes for recovery and a new dressing gown and nightie for hospital. I also put together a list of phone numbers. For me I also sorted pet care. Sometimes a little control over the little things can help when the bigger things feel overwhelming.
Another thing that helped me was being able to talk things through when I needed to. I was lucky to have friends and family around me. Support from others will help. I can recommend the Support Line if you feel you need to talk to someone. They can also have a look to see what support there me be in your local area.
I hope that you get your surgery date soon- there would be no harm in contacting your hospital or your GP and asking for an update. I wish you well for your surgery.
Hopefully someone who has had the same surgery and diagnosis will now see your post and give you some more specific advice. In the meantime if there is anything you need, then you know where we are.
Jane
