Today's post is short and sweet.
My lovely friend Mark kindly applied and was given a place to run in this years Berlin Marathon!!
Mark will be running for The National Brain Appeal- the charity who fund my hospital- The National Hospital for Neurology and Neurosurgery.
Please give what you can to this very deserving cause. Mark's link can be found here: https://www.justgiving.com/Mark-Gilmartin1/
Here's a picture of Mark and Me when he played another one of his 'infamous' practical jokes when we met up and he pretended to the restaurant staff that it was my birthday!!
Mark we all love you and thank you so much for doing this!
For more information about The National Brain Appeal please see: http://www.nationalbrainappeal.org
Gem Xx
Hi Gemma, liked your video about awake craneotomys. I was diagnosed 2 years ago with a left frontal lobe glioma. Awaiting results of a functional MRI and some other tests and then they will probably go in.. I'm being primed for an awake proceedure and as you say, the only material out there is for actual surgery and not the patients perspective... It reassures me to know its not too bad...! Will keep you posted. W
ReplyDeleteHi W, Thank you for your comment about my video. I made it for people as I thought there wasn't a lot on You Tube which was reassuring to the individual as looking at live ops isn't always what you need nor is it reassuring as we don't want to see what's actually happening. With regards to you diagnosis I am so sorry to hear- it's never easy hearing from others in similar situations but also I find it empowering in the sense that we can all come together and talk- Please feel free to contact me whenever you need to either here or via email. I promise you the anticipatory anxiety is so much worse than the actual procedure- it's manageable and this is coming from the girl who cannot even watch simple things or procedures on TV! They give you medications that relax you too so you are sort of in a dream like state- 4 hours feels like 2o minutes I promise you, it passes all very quickly. Are you having surgery in the UK or abroad- I just ask out of interest. Ok well if there is anything else I can do or say to reassure you please let me know. I wish you the very best of luck for your surgery and I hope everything goes well. Gemma X
ReplyDeleteHi Gemma,
DeleteThank you for your reply. Can you let me have your Email address please, I cannt find it in your profile. I live near Gatwick and am seeing the Consultants at Queen Square which I think is the main Neuro centre in the UK. Had my 90 min functional MRI the other day so we are waiting for the 3D images to process... I presume it will still be there and not vanished as if by magic but at least we can now see how the tumour sits with regards to nerves and speach area etc... W
Hi there again- please email me at geminigemgems@gmail.com I can respond there too. I hope the FMRI went as well as could be- I have to admit I found that part harder than the actual op- I guess that sounds crazy in a way but it was the duration and not being able to move in such a small confined space during the FMRI that really got to me and I just felt so frustrated I guess going through it all at the time- was wondering what my friends may be doing etc but I knew if I pressed that button we'd have to start all over again. It also provided my Neurosurgeon with vital info as my tumour was bordering some very eloquent and risky parts of my brain- being in my left hand side too as I'm right handed there were more risks associated with paralysis but I kept thinking ok it's 5% of people that can be affected- it's going to be ok and you know what my Neurosurgeon made me believe this too and I think with that all combined it really did go as well as expected. As you've probably seen I also had my surgery at NHNN so looking forward to chatting more and helping where I can. Best wishes for now and we'll speak again. Gemma X
DeleteGemma, I felt the same way about my FMRI! 107 minutes and you can't move a muscle. Having to wear the goggles and the headphones the entire time only makes it that much worse. When I finished my neck was so stuff I could hardley move it and the next week I couldn't look to the left. The surgery was a breeze!
DeleteHey Ryan, sorry it's taken me ages to reply! So glad you found my blog. Yea FMRI was one of my worst days so far which I guess some people would say "What!" to but I found it all very stressful just the duration and then I was thinking how will I cope with an awake craniotomy if I can't even do this?! Anyways it was all good and I did manage to put things in perspective but yes I agree surgery was a breeze after that! I have my next MRI in March but this will just be for 15-30 mins max. I have something which I think May interest you- a lady at my group swears by a guy called Ratu Bagus and 'shaking'- she was given a prognosis of 5 years max in 2006 after being diagnosed with brain stem tumours but after deciding to do the anti cancer diet and shake everyday she's still here and going very strong. She is one of the most positive of people I have ever met and through her I am now considering shaking. There is a guy in our group too and he has a GBM- he has recently started shaking for 10 minutes a day and again he says he now really feels the benefits of this too- the lady that runs my group now shakes for 2 hours per day but you build up to this and it has really worked for her. I think you can probably google and find out some info on this but if you want to know more let me know. There is an ashram in Bali too where you can go and stay and practice shaking- we would all love to go as the lady that runs my group has just recently returned and she has never looked better! Best wishes, Gemma X
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