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
Hi Gemma,
ReplyDeleteI found your blog through YouTube and wanted to say you are remarkable and an inspiration! I was diagnosed with a brain tumor in June 2013 (olgiodrenglioma grade 2) but had been diagnosed with depression for a good 2 years before it was discovered, but like you, it wasn't like me to be depressed, I am a very happy lady most of the time, but I couldn't make a decision about anything and wanted to stay in all the time rather than go out with my friends. Anyway the doctor says so so you just accept it right? Then aroun dabout 2 years later in Feb this year, I had 3 seizures which eventually led to me having an MRI scan and the tumor diagnosis and eventually an awake craniotomy. Our stories are very similar, I have a great family and friends too and had to stay with my mum and dad when I was recovering from the surgery, though I got home as soon as my biopsy results came through! I love them dearly but at 34 I like my own space! Haha! My speech and my motor skills are a little affected and I will need to be monitored forever and there is a possibility of chemo/radio therapy but I am hoping they are way down the line! Like you say I have had my follow up scan and all was fine so I can forget it for 6 months! Well that's the theory then you come on here and look for ops on Youtube and read all the same stuff! I will enjoy reading your posts very much, cos like you I have down days but this has really cheered me up reading your posts! Wishing you all thew very best! xx
Karen Stirling
Hi Karen,
DeleteThank you so much for your kind comments. It's so great to know that my blog reaches such a wide audience as sometimes I think it's just family and friends so thank you so much for your comment. Firstly I am so sorry to hear we had such similar journeys. It sounds like a much longer time for you before diagnosis and as you say you believe your GP- I don't blame my GP surgery but I do think they need to be more aware of the symptoms- a sudden onset of depression/panic for no actual reason and not being able to make decisions, questioning things etc was how I felt too- it all seemed to build up to before I had the seizures and once I had the seizures it was like a release in a weird way. I would really like GPs to be more educated in this- we know it's rare but also they are becoming more common in ways due to factors which Neurologists are still working out and trying to understand. It's amazing to speak with someone's who underwent an awake craniotomy too- I try to explain it in my video but it's such a surreal time. Being aware but being calm too- my family and friends were amazed at my recovery after in terms of being able to speak etc- my face blew up though a few days after and the pain was quite sore then. I still have a facial paralysis now in my left side- I can't lift the eyebrow. We laugh as it's like I've had Botox but I hope one day I get some feeling back. I think I'm doing ok but I struggle with word association at times so it's like I can see what I want to say in my mind but it takes a while to come out. It was hard for me to come to terms with the 'no exact cure' part but like you said we are in this sort of remission place and all we can do is stay healthy and believe we'll be ok. I'm going to keep meditating and positive thinking can do a lot- we do get the down days or down times but I think it's only natural. Again I am passionate about trying to raise more awareness amongst GPs because our age range is the most common time our type of tumours can develop. Please do keep in touch Karen and feel free to email or contact me any time at geminigemgems@googlemail.com I am happy that I know I am reaching out to someone- you've made my day. I know that may sound weird as I hate the fact that we have BTs but it's a good feeling to know that someone like yourself has read and enjoyed some of the lighter parts of the blog :) I wish you good health for the future and as I said do keep in touch and let me know how you're getting on.
Loads of love, Gemma xxx