My Nurse tells me that this is completely normal and its like a grief cycle in which you spin around at a rate of knots. I can be fine, happy and smiling and then I can break down. Luckily the latter doesn't happen so much but it's hard not to be a little overwhelmed at times.
I have been having a few twitches too mainly in the evening and we have decided that my medication needs adjusting to suppress those pesky seizures as I fear those more in some ways than I do Bertie.
I am also in the process or giving up my license and becoming a 'public transport' user and walker- I miss my lovely Mini so much but hey hum its not all bad- I get a free bus pass don't you know!
Thank you again to everyone who has been in touch and lifted my spirits- I am eternally grateful for your support. I can't imagine what it must be like to support a person through this but you have all been so amazing in your own ways. I've had txts, phonecalls, a FaceTime call from my lovely Auntie Kiki and her family who are currently holidaying in Cyprus (if you're reading this btw get back to relaxing as you're skewing the stats I'm getting for my international readership- yes my story has gone global!), whatsapps, snapchat (still very new to me!) and just so much support from all sources.
Special mention today to my lovely sister Holly who has treated me the same since day 1, sends me inappropriate messages and tells me "You must be loving this" in the style of Mark Corrigan from Peep Show when I ask for something- lol I love you!
I have been recommended to try meditation. I've signed up for a local class so I will review this once I have been to my first session for any of you who are considering this. So many people have told me how important it is to keep positive but also to escape via relaxation from time to time and I cannot agree more. I'm really looking forward to this.
As I mentioned earlier I have been reading a few bits and pieces from Macmillan and The Brain Tumour Charity. This has been great. Sometimes though you are crying out to speak to someone in the same age group who can relate to you and just be on your level. That's one of the reasons I started this blog as well as to perhaps help anyone else who is going through something similar or supporting someone. I guess you just want to be as normal as possible and it's hard because for a short while I am in a limbo situation but we will get there!
My long term goal is to be in a position to help other young people (I know I'm heading for 30 but I still feel young!) dealing with Brain Tumours so who knows maybe we can make that happen??
Ok so I will leave you with my collage of my things from the past few days- literature, fun things- I will not stop having nice nails and could not resist this little Gem from OPI (it's called Polka.com), a lovely Cath Kidston inspired present from my lovely Carl and apps from the app store which are helping me. Calm.com is so relaxing and Rdio is a fab free way to stream all your fave tunes in one place- seek and you shall find!
Lots of Love,
Gem
Keep going my brave girl - love you so much Mum x
ReplyDeleteThanks Mum- Love you so much too. Xx
DeleteHi
ReplyDeleteI'm going in for a Brain Tumour biopsy on Tuesday :0/
Your blog is really helpful thank you.
Are you recovered now?
Hannah x
Hello Hannah- So Sorry I did not get to reply sooner to you I have only just seen your comment. I really hope that the biopsy went well and that you are feeling ok. By all means please contact me at geminigemgems@gmail.com as I am always available for a chat if you have any questions or for reassurance. I am also a member of the Brainstrust closed group and can recommend them too for any support. As I say I hope everything went as well as could be on Tuesday. You are very brave remember that!
DeleteThank you so much for your kind comments. I started the blog as a way to release everything from my side but also I wanted to help others or give reassurance in what quite frankly can be a very scary world, however I like to think I am testament to the fact that actually you can be a bit scared (like I am or was) and you can still make it through and be ok. Yes from the craniotomy I am healed in terms of scar and I am of course feeling well in myself. I am just shy of a year and I am looking forward to hitting that milestone. I was told that 1 year is when everything should have settled down and also kind of what you're left with if that makes sense as I seemed to have a slightly hollowed head and couldn't raise my left eyebrow- they thought was paralysis there but happy to say I can make a raised eyebrow. No real physical deficit I think because I had the operation awake however I have noticed that I drop things more regularly on the right hand side but it's ok as you adjust. Mental health wise I would say this is the area I have struggled with at times- it was particularly bad for me before my diagnosis but immediately after the op I felt very well with my mental health however the months after I had some tough times and even to this day I have my good and bad days (I think this is very common as it's a lot to go through and trying to relate it with others can be hard as not many people can relate but they can still be there to support you)- Another reason why I started this blog because I do understand in many ways.
Would be good to hear from you again Hannah and do keep in touch. Remember go slow in the initial days after surgery and be kind to yourself. Do not rush things and take things at your own pace.
Lots of love,
Gem xx
Sorry i should have said it's the Facebook Brainstrust Closed Group- Please ask or email me if you would like any more info about it. xx
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