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
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