Being Back Home Update and Brainstrust New Research Figures

Hello everyone,

I'm sorry I haven't posted for a few weeks. 

Life's been a bit up and down and settling in back home was a priority. I also caught a cold and had a sore throat for a while but thankfully this has passed now. In the last week or so I have started to feel a bit better although this varies day to day and my strength is definitely weak. I am limited to what I can do outside the house as I get tired very quickly but hopefully this will improve a little as time goes by. 

My scar is very itchy and sore still and I have to avoid touching it- impossible! Even when I'm washing my hair I have to be so delicate. It's so frustrating as I would love to give it a good old scrub!

The pain medication has cut down now and I only take paracetomol as needed but I'm still taking Keppra and Phenotoyin for seizures so we're not sure if this combination is somewhat toxic for me or making me feel certain ways at times. I am going to London on the 9th and 10th December for vocational rehabilitation and to have my medication reviewed- I can't wait to be off the Phenotoyin put it that way! 

I met up with some people from my local Brain Tumour Support Group this week and it was a chance for me to tell them all about the experience of an awake crainiotomy and talk about how we all feel. My group is mixed and we all have different types and grades of tumours. It's good to talk about how we feel and know that the other person or carer really understands what you've been going through or what you are going through. 

I still look at information from time to time and Brainstrust has recently published the below figures- I thought I would publish this today as it's interesting to see how many of us are living with all different types of tumours.             

               

                          

You can visit their website at:  http://www.brainstrust.org.uk and find them under Brainstrust on Facebook. 

They are the same organisation who ran the 'Wear Grey for a Day' to promote their 'Don't be Benign about Benign Brain Tumours' campaign- I have a post about this a few posts back if you are interested. Thank you to all those that txt them and donated and wore grey :) 

I am going to do a post in the future on the Anti Cancer Diet I have been following and also talk about the food I now eat- I could include some recipes for anyone who is interested :) 

I'm also going to talk about fundraising for my hospital in the future too as I would really like to give back. I'm waiting to get my appointments in December and the new year out the way first though so that I know I am fully fit to organise something and get others on board. 

I would like to thank all my family, friends and Bertie Tickle followers for your continued support. 

With lots of love,

Gem xx

Going Home

Well after 6 and a half weeks staying with my Mum, tonight I make the journey back to my place and my lovely Carl.

I'm a mixture of emotions- I'm sad to say bye to my Mum, the round the clock care and all my Surrey family and friends but I am also really excited to see my Carl, his family and also to get back to my own flat. (Carl this is your pre warning so you can spruce the place! ;) )  

My life has changed in many ways and I'll never quite be the same as 'Gemma Pre Brain Tumour' but also we don't know how long I've been living with Bertie so in some ways maybe this is now the start of the 'New, Bertie-less Gemma'!! And she might be a real star! 

So I'd like to say thanks to my Mum and everyone in Surrey who looked after me. Thank you to all my friends who visited, txted, sent cards and all sorts- loves ya Xx

I bought Mum some flowers and a little card as pictured to say thank you today! Xx

I'll be back to stay in Surrey in 3 weeks for my Neurology appointment where we will be adjusting my anti seizure meds as I'm currently cross tapering on to a new drug called Keppra (and coming off the Phenotoyin). 

These are the drugs I will need to stay on for life as I am technically in remission (although there is no actual 100% cure for the intrinsic tumour as I have mentioned before) and removal of brain tumours can also cause seizures so we have to take precautions just in case. I also want to prevent seizures too as I am keen to drive again one day. 

I will see a Speech and Language Therapy Team either this side of the year or early next year and as mentioned I will be MRI scanned in the new year so that when I meet with my Neurosurgeon he can give us an exact on how much of the tumour was removed as the MRI I had before I left hospital showed around 95% but in the new year the swelling should have settled down and we'll know. 

I'll keep you all updated and I'll keep the blog posts coming. I have a few ideas about the things I have been doing post op and who knows I could make another vlog to discuss other things related to Bertie.

Thanks for reading,

Lots of love

Xx Gem 

Awake Crainiotomy Experience- You Tube Vlog

This post is about my awake craniotomy experience and is for my friends and family and any of you who are currently about to undergo this. I promise it's not scary so take a look! Feel free to leave me comments here or on You Tube.

Apologies for my appearance! I still have a lot of swelling and bruising around my left eye and my scar means my hair isn't too hot and I'm wonky faced!! but I think I'm not doing too badly considering it's been just under three weeks now.

Lots of love,

Gem xx

Results Day

Hello to my Family, Friends and BB followers,

Today was a very anxious day and I'm not quite sure how I held it together but I did with the help of my Mum. 

So straight to the point. In layman terms I have what is known as a Low Grade Mixed Glioma. Part of it is a Oligodendroglioma and the nasty part is the Astrocytoma. They have removed around 95% and I will have another MRI in three months. 

What this means is I don't need further treatment right now but I will need to be monitored for life and I will also stay on medications to control my seizures too. 

The gradings of brain tumours go from 1-4 so for me to be a 2 this is great news. I have markers which show it may not grow back and if so then that's bloody great news! 

If anything was to grow back then we would start the process again and go from there. I also had my stitches out today- was a little sore but certainly not painful so anyone awaiting this don't be scared it won't hurt I promise (and I'm the big baby remember?!) 

I'm shattered, I'm typing this from my bed but I'm also so glad we got this over with. I need a lot of rest and recovery now. I know I've probably been doing too much so my Speech Therapist said today I need around 3 months or so to fully recover but we'll see how I go and I'll take it from there. 

So with much ado let's crack open the champers (virgins for me clearly!)

It was my b'day on Sunday- so sorry I didn't update on that day but it was pretty stressful! My sister brought me home (probably a bit too early) and I didn't get a chance to say thank you guys. I've had so many lovely cards and flowers and lots of lovely pressies as you know! So thank you again. Xxx

Thanks so much everyone for being there for me. 

Love you all loads 

Xx Gem