Awake and up all night

Hi again Homebird xxx

I'm so sorry to hear about your diagnosis my lovely, but they're not messing around and the sooner the treatment starts, the better it will be for you. You'll know it won't be easy but I think once it all gets going you'll find the strength to cope, and realise it's doable. I sincerely hope so love.

I'm afraid I can't explain how to find positivity for yourself, as it's not happening to me, but by experiencing my OH's journey of diagnosis, surgery, three and a half months in hospital and then treatment, I can say we took things a day at a time and did everything we were told to do by the doctors. None of that was a picnic but we held onto the fact that without intervention his chances were nil. After almost eighteen months we remain positive, even though the spectre of recurrence is always lurking. Despite that, we refuse to give this insideous disease more than it's already taken from us.

You need some quality rest in the run-up to the procedures, so perhaps speak to your team and tell them of your concerns, especially how it's compromising your sleep. They'll know how it affects patients, so see what they come up with. Sending you hugs xxx

not sure if is the right place i've just waken up.

Thank you for your reply, it helps to know how others manage this journeythat nobody wants to be on. I had fallen asleep but now awake again. I met my specialist nurse yesterday so think I'll call her today and talk things through. Sending you and your OH hugs & hope. It is horrible how this can steal time away from the life you wanted so I like how you say you refuse to give it more than it's already taken xxx

yeah I not been for a while i think I Kown why because I got a hospital appointment in much im not looking forward to it my cancer has gone but I still get scared 

Morning Homebird. 

I understand and feel your anxiety. It sounds like they are moving fast and getting your treatment started. 

Like you been through open operation, one kidney now, big scar and still have a high risk of my cancer returning in the next 5 years. If it does return then likely to be incurable. So starting immunotherapy next week to hopefully prevent the return.

The way I am trying to think and remain positive is I am having treatment and being closely monitored compared to the genral public. Which means any signs of cancer in the future will be highlighted much sooner and we know earlier detection have better outcomes in most cases. 

For now you are having surgery and the cancer is in a part of the brain which can be operated on which is really positive and I think most of us are told the same of a recurrence as they just cant say it wont. So giving you the information. Its all scary and happening so fast for you, but its really positive steps to getting you well again. 

Big hugs and I am sure the brain cancer group will also help in what to expect. xx

Thank you for taking time to reply. It helps to hear from others who understand. I think it's the shock that makes it difficult to focus on the positive just now. I know I have things in my favour, being generally fit & well and not having had symptoms, plus the fact it was picked up whilst checking up something else (which is ok), so it is operable. The neurologist also told me to remember that we are all different, our cancers are different and how we respond to treatment is different, and to focus on how I am rather than what an "average" outcome may be. So it's getting into that way of thinking about it. I hope your immunotherapy goes well too.

It is very individual and the statistics are based on a averages. It is all a whirlwind then you sit there listening to them. All of sudden its like a brain switch off and you can see their mouth moving and nothing else was going in which I found happened to me at the start. I think calling your nurse today and ask questions is definitely the right thing to do. 

Again it is postive you had the scan for something else and it was picked up. Without this scan you most likely be walking around for months or may be years with no symptoms at all which tends to happen, with most cancers not showing signs till they are really advanced. 

You are going to have days of I am going to get through this and then the next day it might feel like everything is lost and no hope. These rollercoster of feelings and thoughts are all normal. You may get angry, annoyed, quiet, over think, reaserch, read the same material over and over too. I would say from my personal experience is every feeling and thought is valid and needs to be expressed. I speak about them openly with family and friends. I have called the support line when things get to much and it was really beneficial. Xx

Superb posts Jamie - you've summed the whole ghastly experience up to a tee.

I hope Homebird and Doreen can take solace from your words. Big hugs my friend xxx

Thank you. I just try and be impartial and base all my answers on my own journey. However individual our cancers journeys are, we all share similar thoughts, processes, feelings, bad days, good days  from grade 1 to grade 4 and this is what brings us together. And if we can offer some words of support or for those who are unable to speak then a thumbs up or down means we can be here for each other day or night. I would not have gotten this far if it was not for the support of you, your OH and many others in here with their genuine understanding and support. Xx

Thanks so much for that sweetie, but we've taken a lot from what you've offered over these last several weeks. You're getting the biggest thumbs up  from us two here xxx