Happy New Year!

Dear BB Followers, Family and Friends,

I would like to wish you all a very HAPPY NEW YEAR!!!

Wherever you are tonight or whatever you are doing I hope you are having a great time or doing something that suits you and makes you happy. 

I have chosen to stay in this year as it feels right and not only that I feel like I want to reflect on what has happened over the past year and just basically relax. 

My plans were very up in the air until the last minute due to feeling unwell with the cold and also the infection with the wound. 

Luckily I was able to see a wound specialist at my Mum's GP surgery in Surrey who was recommended to us and she has been able to help treat me (and saved what could have been an unnecessary trip to London!) 

I am having a Silver Oxide style of treatment as it's something to do with how the skin has healed (or not healed in my case) and the only way I can describe it is like having a giant matchstick rubbed on the infected area which causes a reaction to help heal the wound in a better way and hopefully end this cycle of scab, fall off, infection, scab and round again etc. I will update on my progress as the treatments should be competed by Monday 6th January. 

My Mum and I decided that I could come back home to spend New Year with my partner and I jumped at the chance as I find it hard being away too long (and of course I miss my own space and surroundings) so I'm back for a while until the next trip to London which is another psychology appointment on Monday 6th January. 

2013 started well but it wasn't all roses (as most of you know) so I'm looking forward to a fresh start and new beginnings.

Xmas Day 2013 was very special to me this year as my lovely Carl (wait for it!!).... proposed- yay :) I feel like one lucky lady indeed and am so happy. We had a beautiful day together and he said it just felt very right to propose on that day. I will of course share more about this in the New Year!! For now I want to revel in the joy...Oh but here is my pre ring, ring for you to see: 

I love the quirkiness of this ring and I love that my partner Carl has tried to ensure when I look back over 2013 that I don't feel it's all bad- he's a keeper in my eyes.

I feel very blessed and lucky and cannot wait to share everything with you all over the coming months, although I'm not sure how quickly we'll marry, that remains to be seen as I think we'll need to save a bit first! 

What I like about the above too is that I feel like I have a focus on something now and that's a nice feeling. I think if you can become engrossed in some sort of project be it personal, work or leisure time, that it helps you to just get on and live your life as opposed to focusing too much on the distant future or wondering about the 'what ifs'.

On that note I have a quote I would like to share with you all:

"Yesterday is History, Tomorrow a Mystery, Today is a Gift, That's why it's called the Present"

I am not sure who originally wrote or said this but I think it's beautiful. 

With lots of love,

Gem xx

Merry Xmas Everyone

Just wanted to do a quick post to wish all my Family, Friends and Bertie Blog followers a very Merry Xmas! 

I can't quite believe Xmas is actually here, it seems to have come around quick this year. I wish you all a fun and peaceful Xmas. 

Unfortunately I'm still not well with a cold

  :( It's in full swing now and I also had a few nosebleeds this morning which wasn't too good as I haven't had one of these for ages but I think the pressure of the cold may have been the cause- luckily they have calmed down now but I did freak out for a minute. 

I managed to get hold of a specialist Nurse today from the London team as part of my scar may also be infected- I saw a GP yesterday and they have started me on a course of antibiotics just to be on the safe side- the nurse got through to my Neurosurgeon and I may see them next week as they don't believe it's serious as such (more a surface wound) but they want to keep an eye on it- she also reassured me that the nosebleeds are very unlikely to be related to my BT (as I sort of feared for a second-unfounded I guess but it did go thorough my mind) and said that all the medications I am currently taking could be causing some of the bleeding possibly- I guess we'll never know but I'll update on this again next week. 

The days following Xmas I'll be back with my Surrey family and friends and I hope that I feel well enough to celebrate and relax with them.

Love Gem Xx 

8 Weeks- Post Op Observations

Hello everyone, 

I'm currently writing this from my bed as I have a sneaky cold which started last night- it literally came from nowhere! I'm trying to rest it out and extinguish it with lots of green tea, fruit and veggies! May even go for a brisk walk shortly to try and blast the darn thing!! 

A few things which have been bothering me post op recently and I'm sure some of my BT followers may be able to relate to this (warning do not read on if squeamish!) 

1. Scar- the scar now is starting to lose the crustiness/scabby bits (gross I know) and I'm able to wash my hair now without having to be so careful but some of the tufts of hair are protruding at weird angles, only around an inch or so long and I know this is just temporary but not sure how to style my hair?! I sometimes have temporary surface bleeding too where the scabby bits come away and this means I've seen my doctor a few times over the past weeks just to check there is no infection. I'm going to attempt to wash my hair again today as I don't really like having unclean hair as it tends to itch a lot more too which is equally frustrating as you can't really scratch it properly. 

There are some random short bits all over my head too where it was cut to fit the MRI discs pre op. The scar is a bit more visible now as the head underneath is quite red/pinkish too. Again I know this is trivial and the hair will grow back but I am finding having a strip which runs ear to ear can be hard to work with at times- my current solutions have included getting creative with alice bands! 

2. Fatigue- I'm having to keep a fatigue diary but I'm not sure what is normal at this stage. I'm not sleeping in the day now but I'm either rising early or late and I get very tired around the 7-9pm slot, often going to bed about 11pm. Again I'm sure this is all normal but it's something which I'm trying to adjust to as I used to have more energy.

3. Emotions- a bit more leveled but I can be up and down like a yoyo.

4. Cognition/Understanding- I can be mid sentence and forget what point I was trying to make or even the conversation I was having so in my mind I'm sort of back peddling to think about what I'm saying. Sometimes if someone gives me instructions too quickly I can't always understand straight away- I just have to take things a bit slower. 

5. Hollowing- I have noticed what I think is a slight hollowing to the top left of my face (I still have facial paralysis with the left eyebrow which we were told could be permanent as sometimes nerves rejoining can be a one in a million thing) it's not a problem as to my friends and I we joke it's like I've had Botox! Wrinkle free for me! The hollowing is something I noticed when washing my face the other night, it's just a small part but it's like the head on the left side is slightly more angular now which then at some angles looks/feels like a hollowing- again this could be temporary and my partner Carl says this is not noticeable. I think you just pick up on things more as you're constantly watching and waiting for things. Maybe that's just me?? 

I wanted to document the post op things I have noticed to keep a timeline so that I can discuss again with my team if necessary and also I hope this may help for anyone else currently experiencing post op symptoms. 

Gem xx

Quick update: Washed the hair and it's still a bit gunky and yuck so managed to get a GP appt and she has started me on a course of antibiotics as she felt it perhaps needed something to help it along- so I think I'm going to have to not wash it again for a while to dry it all out :( The joys of it all!! And my cold is in full force mode now!! Grrr...I'm determined not to let it ruin Xmas as it's one of my favorite times of the year!! 

Psychology, Neurology, Fun and Frolics

Hello everyone,

So last week I had two appointments in London. The first one was to help me back to work and is what they call 'vocational rehabilitation'. I met a Psychologist and a Therapist who will be there to help me- it didn't get off to the best of starts (packed tube which made us a bit late and also they were not aware we had arrived!) anyways it was ok. I am going to have to liaise with my Occupational Health team from work as well, to try and get things in place for a return which we hope should be end of January or the beginning of February- it was then I realised my life from the beginning of August seems to have flashed by!

After the appointment I wandered around with Mum and we bought some Xmas cards on behalf of The National Brain Appeal charity- I will be sending these to all of my family and friends this year as it's my first step in giving something back. More to come on this charity in the new year!

Afterwards we stopped for coffee and bumped into my Registrar- it was nice to say hello and we had a quick catch up. We were there to meet my friend Leana (who was my hospital buddie) and her Mum and it was so nice when they arrived to catch up. My Mum and Ley's Mum could talk about their experiences as our Mum's/Carers and Ley and I got the chance to gossip and talk all things BT- We both agreed it can be frustrating at times, because on the outside we look well but on the inside we're not or we're going through the emotions of adjusting to life now and it's hard at times. Ley and I said our goodbyes and I wished Ley and her Mum a wonderful Xmas and New Year! Hope to see you both again in the New Year! Xxx 

Tuesday was my second appointment in London and this time it was to meet my Neurologist- the difference being the Neurologist will manage my condition for the long term now as in January I will be released from my Neurosurgeon as I do not require further surgery at this time. My Neurologist is a great guy and he was lovely to talk to. He was also so knowledgeable (as you would expect I guess) but also great to reassure me about some things. As we know my type of tumour is not classed as 'curable' (for reasons which I've mentioned before) but what he believes (and my Neurosurgeon) is that by operating early (and where you can) on a low grade glioma, it has the possibility to change the natural history of the disease- because the type of tumour I have will eventually always turn to a grade 3 and 4.

So not only has my operation been carried out successfully, my Neurologist was also able to tell me more about the biopsy and that I have markers which indicate it may not grow back (they can never say never because of the 'no cure' part and because microscopic parts will always remain) and also although the result is not back yet he believes that it will respond well to chemo and radiotherapy treatments, should I require these in the future. So this was very positive news to hear and makes me feel good knowing I have options. 

My Neurologist has put together a tapering plan for me to come off of Phenotoyin so by mid January I will be off it completely (Yay!). I have to watch for any mild seizures or movements in the right side, possible spasms of limbs etc but fingers crossed we have the right dose of medication for me, although some of the side effects may indicate the new drug Keppra is not the one for me but we'll see how I go. 

So after the appointment finished we went back to the main part of the hospital to deliver Xmas cards to the wonderful team that looked after me. Mum then said she had a 'surprise' for me...What could it be I wondered?!

We went back to Piccadilly Circus and admired the lights and then on to Covent Garden. The first part of the surprise was my Sister Holly arriving and then we went for a nice meal together at Pizza Express :) The next part was the actual surprise and my Mum being the wonderful Mum that she is had booked for us to all see 'Charlie and The Chocolate Factory'. When we arrived we were bumped 13 rows so we ended up with amazing stalls seats! The show was out of this world fantastic and also had great music and nods to my favorite Gene Wilder- a must see for avid theatre goers! I wanted to see the show for my birthday, with Carl, but as we know I was a wee bit poorly then so this made up for it in bucket loads  (Charlie Bucket- see what I did there?!)

Anyways I have put a little compilation of pics together from the day below :)

Lots of love

Xx Gem