Once you have left the hospital and are sent home with several drugs and a few letters saying you will be sent to a rehabilitation centre in due course. It can feel very frightening. You are being taken care of in hospital 24/7, but when you leave the hospital, nobody gives you a ‘How-To Guide’. I have walked the walk myself, and I know what I wished I knew back then to lessen the stress of the whole thing.
Here are 11 Things You Need To Know If You Have Survived A Brain Tumour to give you a heads-up on what may help you going forward waiting for recovery.
Social Media can be really great to connect with friends and find out what is happening in their world but, it also has Facebook Groups where there are several Brain Tumour Community Groups.
Check with your GP if you are now entitled to free public travel. In London where I am, I have a Freedom pass in certain areas. I am now partially blind. Depending on the disability you may have post-surgery, You can get a form from your local council. I can’t tell you how beneficial this has been for me financially
If you are now on seizure medication, you may be entitled to Free Medication. This can be for a number of disabilities if you are on something long term. The hospital and my GP never told me that. I found out 3 years later from my local Pharmacist. This way you can save your money on prescriptions as I did. Use the money to buy some cookie dough, Ben and Jerry!
(If you are on a lot of tablets like me, try getting some Tablet Holders online. This is the one I use HERE)
Ways To Help With Speech Problems
My surgery incision was on the left side of my head, one of the parts of my brain that was affected was my speech. When I first tried to speak I couldn’t get any words out, I had trouble finding, words. When I did say a word, it was nothing to do with the word I was trying to say. This doesn’t happen to everyone. It depends on where the operation has been done.
Your memory will get better over time, and you will more than likely see a speech therapist. I definitely had some excellent Claire-isms. I’d try to say ‘Can I have some Po-po cops’ instead of ‘Can I have some coco pops’. I still 10 years on, call my shoes “my feet”.
“where are my feet”
I get quietly excited if I can say a word with over 3 syllables in it. Building up vocabulary is always getting better.
Ways To Help With Memory Issues
My memory was terrible when I came out of surgery. Take a recorder or take somebody with you for all appointments, so you don’t forget the conversation later. If you are taking a recorder (use a Free App), you must tell the doctor you are using it.
Ideas To Keep Busy while stuck at home
When you are bored, and that will happen, which gives you time to overthink things and that can spiral into depression, or you become completely unmotivated. When we have been given what feels like a 2nd chance at life. We need to make sure we start with the right mindset.
Try some of these great ideas, depending on your situation and how much you are able to do. Never overdo things, just do things at your time. – Click Here
Be Inspired by these books, eBooks, or Audiobooks
A way to inspire you may be to read other people’s stories. Inspiring, Real and Honest accounts.
Stories by People From All Over The World! who heard the words, ‘You Have A Brain Tumour.’
These books may be helpful to people newly diagnosed and to family, friends who want to understand more.
Read my top suggestions HERE
Confidence Building with CBT
Look online about Cognitive Behaviour Therapy. It is a talking and practical therapy where you change your thought process which may be causing your anxiety or anger or a number of personal struggles since your diagnosis.
Be kind to yourself.
While you try to come to terms with everything. Cry at any opportunity to get the overwhelming feeling out of you. Do it into a pillow quietly or find your best confidante to talk about it. From my own experience, I just shut myself off from the world and reached out to God and to my 2 besties.
If you are struggling to deal with life and struggling to talk about it to family or friends, seek counselling. It was one of the best things I ever did.
Brain Tumour Information.
It is not signposted from the hospital what to do next, and you may be left thinking, what now! I highly suggest you look at one of these charities which have loads of information.
Here are some of my top charity suggestions:
- Brain Tumour Support
- Brain Tumour Research
- The Brain Tumour Charity
- Brain Tumour Research South Yorkshire
- Astro Fund
What have you learnt on your journey so far?