Happy New Year

Hello BB's,

Very much like last year I wanted to wish everyone a Happy and Healthy New Year. I'm not a huge fan of New Year but I do like the idea of it being a fresh start and a chance to implement new things or change something in your life. 

We're having a super quiet one this year again as I've had this lovely chest infection which is just about clearing but to be honest my perfect New Years does just involve chilling out and good company! Win, win! Sorry I did not wish you all a Merry Xmas (due to the above!) but I hope you all had a good holiday season. 

Bertie wise all is still as before- next scan is end of Jan and my appointment is 17th Feb to see the Neuro Oncologist so will of course update after this (and if not before!) the overarching opinion is that it is still minimal growth but needs a lot closer monitoring in the interim to see what he does. 

2015 is set to be a big year for me personally as I will marry my wonderful Carl and after all the planning we are very much looking forward to this! Again I will be sure to update my blog with some lovely things from the day! 

Thanks again to all that have made such a difference in my life in 2014. I am reminded most days of what an amazing family, friends and support network I have. I am wishing you all the same as this time of year tends to put a lot of pressure on people ordinarily so when you are also living with a chronic condition it can really heighten things so be good to yourselves and look after you. 

I hope the sun is shining tomorrow as I know I'm looking forward to getting out in the elements and working off some of the Xmas sluggishness! 

Love to you all,

Gem

P.s a favourite quote of mine which I'd like to end on from one of my most loved films of all time, Vanilla Sky:

"Every passing minute is another chance to turn it all around"

The Good, The Bad, The Ugly

Dear BB Followers,

Let me start by saying this post is not a pity party and that is why I still find it so hard to tell people when I have my scans and then the inevitable results…

When I’m riding high and I’m feeling good I want to tell you all and shout it from the rooftops as that is bloody fantastic!! But when the bad news or not so good news comes this is when I really do not want to tell you and I don’t want to be your brain tumour relation or friend. I quite frankly do not want to be the bearer of bad news, and I do not want to be the conversation stopper. Notice how a lot of this is “I” Yep this condition sure makes you insular- a topic one of my favourite bloggers spoke about recently too. You cannot help saying “I” but of course there is no way to describe something that is happening to you without saying it. 

Tuesday 18^th November was results day. 10 days prior to this I had my 6 monthly MRI scan and that part all went as usual. On Tuesday however it didn’t quite go as I had thought it would. We started with a great appointment and I really do respect my Neuro Oncologist. He is a great guy and he is always very approachable and I have never felt rushed in fact I think we spent around 1hr 40 minutes together which when you have a caseload of patients, that is a huge amount of time (especially when you think about all the crap the NHS gets- I think the NHS is glorious and in my experience I do not know what I would do without it). 

So cutting to the scans- basically they were inconclusive. My Neuro Oncologist then said before discussing anything that he would like to review the scans for himself. My stomach dropped and I can honestly say it was one of the worst 15-20 minutes of my life as I sat there with him, Mum, Carl and I. When he gave us the news that there has been growth, I felt flawed and annoyed that my body has let me down (again!) but that wasn’t all…

Bastard Bertie has grown at the front of the cavity. It’s not even the 5% that was left (the exceptionally naughty and difficult to remove part!!)  It is essentially and quite possibly a part that was already resected. It is still the front left hand lobe and it’s not broken away from the cavity (the good news part) but it has still grown within a centimetre and it’s noticeable. We asked the questions and at this point it isn’t thought to be swelling and it is not scar tissue. My Neuro Oncologist was quick to say that it is still considered minimal growth but he was surprised too that it has grown this quickly. Surgical opinion would need to be sought again and that if it’s no to surgery that radiotherapy may need to be the answer this time…and/or possibly together. I will be discussed at the next Multi Disciplinary Team (MDT) meeting and then I will have a repeat scan in 3 months (or possibly sooner) depending on what is decided at the MDT. 

As you can imagine initially I felt not great. It feels like being diagnosed all over again and it feels like a setback. I always knew the journey would have twists and turns…but this early in, I have to admit it hurts. I have the wedding next year and the thought of having another surgery and/or starting treatment again before this shocks me to the core BUT I am determined to kick Bertie right in the balls again and I will do ANYTHING to take him down…so all these mixed emotions aside I am determined to win again. 

I am still positive, I am still determined and I also know that out of all the bad news that people receive when living with brain tumours, I am still on the good side of bad news. I still feel blessed, I have an amazing partner, family and friends and I have all my BB followers and people I have met through what is the most god awful circumstances…but we have each other too which yes is cold comfort but strength in numbers gets you through and also a little perspective too when I know others who’s suffering is so great right now. I am sending love and blessings to you all. 

As you will hopefully appreciate those of you who I messaged to let know there is a blog here tonight…it’s still hard for me to talk to you individually, one by one as I am being very strong but also I am still trying to implement measures to not be on the phone too much as we still do not know but radiation is still key on my list of things to cut down…If you want to speak with me please do via email, whatsapp, letter or carrier pigeon too (insert the cheeky icon face here…I need one of those desperately!!) 

I am off to meditation tonight as this is something that I will never quit. I love class and I love the feeling it brings to me. Please do not feel sad…Take comfort in the fact that thinking about how much love surrounds me and how much I love you all is what gets me through…I will blog again soon. 

All my love,

Gem xxx

Berlin and the Marathon

Hello BB followers,

A little update which is long overdue. We made it to Berlin and had an absolutely fantastic time. What a beautiful city full of culture, steeped in history. It was incredibly poignant and moving at times- an extremely interesting place to visit. I could not recommend it more if you are after a city break, this city is a must! I will not go all trip advisor on everyone but instead I have some visuals for you all to look at :) 

My amazing friend Mark completed the marathon in his new personal best time of 3hrs 54!! He was made up and it was a very emotional day. We also smashed the fundraising target so thank you so so much to everyone who helped us achieve this- your efforts are going towards helping research, updating equipment and improving the lives of everyone living with neurological conditions. Thank you, thank you, thank you.

 

I will be back soon with more updates over the next few days as lots of things are happening- watch this space :)

Lots of love,

Gem xx

Happy Anniversary- One

I’d like to start this post with a dedication to my lovely fiancé Carl- It is our 8 year anniversary today and I would like to dedicate this post to you for all that you have done for me over the years and especially this past year- You have been my absolute rock and beaming light of positivity in the days when there has been darkness…all I want to say now is bring on the wedding next year! Xxx 

So today BB’s marks the one year anniversary of my diagnosis. It was around this time that I was waking up last year, two cannula's in the crook of my arms, thinking “that was pretty scary” as I couldn’t remember too much about the seizures at that point…and then the tumour news came from the doctors…and life hasn’t really felt the same since. It’s so hard to explain unless you are on this journey too, but knowing a little bit more about your body (and its faults) can open up many worries but also it helps you live life in a way that you never did before- every moment becomes more precious, every birthday and anniversary more special and every event or moment that you share with loved ones even more significant and treasurable. 

I have also officially made it 1 year seizure free, however in order to get my driver’s license back I need to be seizure free until one year post op (23^rd Oct) so I am keeping everything crossed for that one!

I have met so many wonderful people over this year, some whom I would have never met otherwise- although it is bittersweet in many ways and I have experienced some difficult times with these people, nonetheless I am honoured to have met you. To Ben, To Cass, To Ryan (FTGF), To Karen, To Will, To Lu, To Nick and Niki, To Liz, To Lorraine, To Kerri, To Nancy and to all the other people or anonymous people I have met through the world of blogging and beyond- thank you and lots of love. If I have missed anyone here I am sorry. To those who are sadly no longer with us- thank you for all you have taught me and shared with me.

To my team at NHNN- Again I can never say enough thanks and I hope our journey together continues to be a good one.

To Helen at Brainstrust- Thank you for being there in my hour of need and to the community I have met through the online support- Thank you. If anyone out there would like some support I cannot praise the services of Brainsturst highly enough. I have mentioned them before but if you have not got in touch with them beforehand and are a patient or carer of a loved one living with a brain tumour then please see: http://www.brainstrust.org.uk/

To all my friends and family (far too many to mention!) I love you all!!

So in a nutshell what have I been doing for the last few weeks and months?? Well work has been the main part of getting back to a semblance of normality. It has also been therapeutic in ways to be back in a routine and also surrounding myself with others and escaping the living, breathing, eating and sleeping, all-encompassing world that can be brain tumours and brain cancers.

There has been lots of fun times the past few months hence my lack of blogging. Carl turned 30 and we had an awesome time in London (see pictures!) My best friend Jo also had her birthday and we had a wonderful time at a comedy night seeing a comedian who we saw when we were younger and adored- you know the saying  that goes ‘never meet your heroes’ well that kind of applies to that night! There has also been a trip down to Devon.

There have been hospital appointments mainly to see the Neuro Rehabilitation Team and Psychology Team who have been instrumental at keeping me in work but also keeping me feeling well and positive. Mum and I still continue to try and make a day or evening of it when I have hospital appointments. Last time we went to see 'Fatal Attraction' and I even got to meet one of the stars of the show Kristen Davis- wow talk about starstruck- she was absolutely gorgeous in real life and those of you who have met me know that I am a huge SATC fan so this was just one of those surreal moments in life!

We’ve also now hit over 11,000 hits to this little blog so that’s pretty awesome too :)

All in all life continues to be good and I am trying to be kind to myself.

Sending lots of love to everyone,

Gem xx

Long time no blog...

I promise I have a loonnngg blog post coming soon. I have just been so busy with life- things are pretty crazy at the moment- work is the main thing taking up a lot of my time and it's hard working and living with the little joys that Bertie has brought into my life- fatigue being the main one and man it's hard to manage in the sense that one day I can be a super trooper and the next I am flu like, achey body and just blurghh- sofa bound it feels- but we fight on!! I hope you are all well and I'll be back soon with a round up  of all that has been happening in my world.

With much love,

Gem xxx

Mind your P's and Q's...an update

So today (yesterday now!) I finally got the news about my 1p19q gene mutation. I don't have the gene, I'm negative. We hoped for the best of course and having it being a bonus but it's ok as I was prepared. In summary this could mean I don't respond as well to certain types of treatment e.g chemotherapy but right now I'm not undergoing any further treatment so there is no need to worry. 

I still feel incredibly lucky to have IDH1 and I still feel positive about being the mixed glioma, and a grade 2. 

Life is good, I feel good and I can't complain. 

Mum and I were having a chat earlier about the phrase "mind your p's and q's" and we laughed as I said I thought it was about minding your manners but Mum said it was to do with drinks measurements 'back in the day' being measured in p's (pints) and q's (quarts) but I think in the modern world the definition is still about 'minding ones language!' Anyways we laughed and it seems pretty apt for today's title! 

Whatever the weather I'm going to keep going with the holistic route, I love meditation, I believe in a healthy diet and lifestyle and I am hoping to try magnetic healing very soon and will put a review here when I know more! 

It's Carl's 30th birthday this week and we have a special London trip over the next few days. I can't wait!! More on that to follow as I will try and capture some nice moments! 

Loads of love, 

Gem xx 

Optimism

Hello everyone,

On Tuesday I had a long day of appointments up at the hospital in London- NHNN. Here's how it all went:

It started with an MRI scan with contrast- this all went as well as could be as I have to admit I was a tad anxious due to the fact that I've always either been semi unconscious when I've had contrast or I've already had a cannula in my hand e.g post op so I was curious as to how it is administered- I think I'm a control freak and just wanted to know how everything works- some may find that bizarre but being such a needle scardeycat I like to at least know (and if anyone is reading this and is worried I'm hoping this will reassure you) Essentially all that happened was similar to having your bloods taken in that crook of your arm so nothing massive being placed in my hand as my over active mind was dreaming up! All very simple, straight forward and no discomfort.
 
Once I was ready to go on the scanner they laid me down and tried to put the contrast in- now we weren't sure if the vein had collapsed or what was happening but they had to go with this a few times as it wasn't going in (I think my vein was just thinking "Sod off with that!") anyways it did eventually go in and away we went! All in all it was so quick this time but before I went in the lovely nurse said that I would be "10 minutes" maximum but because of some delays with the person in front of me and then the above contrast issues, I ended up being in there for over an hour- hence when I came out of the imaging centre and back into the reception my Mum and Carl were nearly having kittens wondering where I had been (See, it's not just me who has the over active imagination!)
 
After a lunch break it was time to see my new Neuropsychologist.  I wasn't at all worried about this in fact I thought it was a great service to be offered and I was keen to talk through some of my fears and anxieties which I think a lot of patients can relate to post diagnosis. The appointment went really well and I would recommend this type of service to anyone who feels they need to talk things through with someone. Now because I don't live in London it may be the case that I need to access services a little closer to me but the Neuropsychologist was very lovely and said that he would be happy to see me when I am in London for other appointments or to get in contact. I appreciate that not all hospitals will offer this service so it may be worth speaking to a GP to see if you have anything within your local area that you can access or if you have one speak with the Clinical Nurse Specialist (CNS) who may be able to advocate with your GP to advise them about supporting you - I know for example where I am in the Berkshire area that Talking Therapies is our local NHS service who offer CBT style counselling and additional services.
 
So the main appointment of the day was the one with my Neurologist at 4:30pm. We started off just talking about how I am feeling and how everything is going. I was then waiting to hear about a couple of things but unfortunately my scans from the day were not available to him even though we thought they would be- I of course became a bit distressed by this but he was very reassuring and said firstly he felt that there would be no changes but also that these newer scans are really now giving my new 'baseline' and it will be the next scan which I will have in another 6 months (October time) that will tell him if there are any changes etc, however he feels because I have had a maximal resection that it is unlikely anything will have happened this quickly, so I still felt a little frustrated not to be able to see anything in black and white but also reassured.
 
The next part of our conversation turned to gene markers. These seem to be something that a lot of other patients I know either in my community or via the blogging world and online communities have become very interested in. I know I am IDH1 positive that is what makes me low grade or slower growing etc but I thought we would hear if I have a 1p19q deletion but unfortunately I still seem to be 'status pending'. Now he said this may be an administrative error and we should know soon but also he talked me through all of this in a mini oncology style session. Firstly he said he appreciates why patients may become engrossed with what they have or don't have but that also it still is not as clear cut as one may hope- our bodies are all different and things such as age and general health also denote how we will all respond to the type of tumour we have and the treatments. 

In essence what he meant is there are always options no matter what you have and we should not concern ourselves with what we do and don't have as this will only lead to more distress in what is already a difficult time. This left me with a feeling of hope, upbeat and an optimism about things- live for the now, don't delay and don't worry if there are things you do not have because it's not always indicative of how your life will plan out.
 
This sort of leads me to another link I would like to share with people who are following this blog as either a patient or partner, family or care giver of someone who has a brain tumour. I discovered a great book by a fellow blogger who I have followed for a while now called Gideon Burrows- Gideon has written a book called 'Living Low Grade' and I just finished this book on Wednesday. It was great for me as it's optimistic, honest but also it meets halfway between medical and Gideon's own personal experiences of living with a brain tumour and other individuals who have contributed to the book. I liked how he summarised and helped me to understand some of the more complex terms- even if it was not his intention to write a medical book it was still extremely helpful. Now some of you might feel you're not ready to read it but for me being 8 months into this journey it was the right time. You can use other sources but I downloaded the kindle version from amazon: http://www.amazon.co.uk/Brain-Tumours-Living-low-grade/dp/0955369576 

Gideon recently hosted a Google hangout meeting that he had with three other experts (including a fellow patient) discussing living low grade and again I found this really interesting. I will add the direct link here: https://www.youtube.com/watch?v=Fe1UG-ISNFM 

If you are interested to read Gideon's blog you can view this here: http://www.ngomedia.org.uk/tumourist/ 

The above links may not be for everyone but I know I found the book extremely helpful and I have urged my immediate family and close friends to read the book as it summarises things in a clear and concise manner. I think sometimes I may expect others to be brain tumour experts when they ask me how I am doing etc (this is something I liked about the book and Gideon covers this) but how can they be when before this touched my life I knew nothing about living life with a brain tumour. 

Slowly but surely everyone I am close to is finding their own way of dealing with everything but also life is starting to return to what I knew before and is almost back to 'normal' but in a new way. 

So I leave this post with optimism...

It'll be 6 months now of living my life and forgetting unless I have any new symptoms of course but if not we'll just see where life takes us. The sun is shining and I can't wait to get my natural vitamin D over this Easter weekend.

Wishing you all a very Happy Easter break and I'll be back soon...

With lots of love
Gem xx 

Second Time Lucky

Hello BB Followers, Friends and Family,

A quick post just to say hello and to also let you know that I am off to my Mum's in Surrey tomorrow evening and then on to hospital on Tuesday.

Tuesday will be MRI scan day (with contrast this time as kidney function is all good so we're all systems go!). This will be followed by a quick break and then a psychology appointment- not something I am too familiar with as yet because this is a new person I will be seeing who is an addition to my vocational rehabilitation team who are helping me back to work. And then, like a day at the races, the all important 4:30pm race, no on a more serious note I mean my appointment, where I will have the MRI scan results and meet with my Neurologist. I hope he's ready as my little black book now consists of a ton of questions related to everything I've been experiencing with Bertie Tickle stuff, medications and epilepsy.

I started back at work around 2 weeks ago. I'm currently doing very reduced hours and duties so I am not being pushed too much at the moment but I continue to experience fatigue which can be very difficult to deal with as I want to keep going but the body says no! Anyways as a way to remedy some of this I have returned to my local gym and I have a program in place to hopefully help me build a bit more stamina as until now I haven't felt ready, mainly due to the fear I live with about having a seizure but I figured as things have been relatively stable now for 7 months in the seizure department that I am good to go and can at least try- I have to admit it feels good to be back in the rhythm of going to the gym as I find when I am there that I just sort of stop thinking about anything and it feels like I'm looking after my body (and soul!) so that's all good for me.

I will post again in the next few days following my appointments. 

With loads of love,

Gem xx  

p.s my current favourite quote...

Scancelled...

Trying to be clever with my title today!

Hello all my BB followers, family and friends.

So last week was scheduled to be my 6 month post op MRI scan...it kind of went like this:

Nurse: "Have you had your bloods tested for renal function?"

Me: "Er, No?!"

Nurse: "Well in that case we can't give you the contrast injection"

Me: :*(

So yes the above did happen. I had a partial MRI scan without contrast and during this scan the lovely nurses made contact with my doctor who would not give out blood information over the phone but did fax through my most recent blood results but unfortunately she hadn't tested for renal function (kidneys) and this has to have been done within the last 4 months to be valid. 

Although I had all of my blood tests at the hospital in October 2013 unfortunately they are now out of date. The frustrating part was that I had only had a blood test the week before as I have been experiencing a lot of flare ups with my tummy and my doctor wanted to rule out things such as coeliac disease. Preferably I wanted to have a sigmoidoscopy as my family have a history of Ulcertaive Colitis and other bowel conditions but I think what I am experiencing is the "you're only allowed one condition" style treatment. 

This makes me quite frustrated because as a lot of you will know I fought hard for a second opinion and also I went to my doctors around 7 times before I had my first (and only so far thank goodness) grand mal seizures and then my diagnosis- in between the diagnosis I was told "At very worst you have epilepsy" so to then be told it was a brain tumour (after grand mal seizure number 4) was a big shock to say the least. 

If early diagnosis is the prevention (and possibly the cure) I want to know why some doctors feel they won't take people's health complaints seriously. Ok I appreciate perhaps some patients may border on the more hypochondria side but when a young person repeatedly sees their doctor, or for that matter is admitted with a first time seizure (or set of seizures) a CT and MRI scan should be ordered. I have been told that the above is basic 'guidelines' but for me it didn't happen that way, it took x 4 grand mal seizures and 2 hospital admissions before they finally decided to do a CT and MRI scan. 

Between my family and I we have also found that an MRI scan costs approximately the same as x 2 standard '5-10 minute' doctors appointments- so why not let people be scanned for peace of mind?? All the adverts on TV say 'Be Clear On Cancer' and 'See Your GP' but as a general consensus amongst my family and friends, living across three counties, this has not always been our experiences. I cannot generalise here as I have had outstanding care from previous doctor's, and I am aware the good ones are out there (after my Mum's recent experience with 111 and spending a good proportion of time with the doctor!) Anyways this is all past now but I just wanted to have my say. (Getting down from my soapbox!) 

I watched a very good documentary last night on BBC3 called 'Dying To Live' about a girl named Kris who was diagnosed with Stage 4 terminal breast cancer aged 23. Kris has gone on to start the well known charity Coppafeel http://coppafeel.org/ Although there were parts of the documentary that were hard to watch and made me feel very sad, it was also uplifting and inspiring to see a young lady, fighting for her life, against the odds. She has survived 5 years post diagnosis and she continues to fight- she is working currently to persuade the government to introduce cancer awareness into the curriculum- I think this is a fantastic idea and I support this too. For anyone interested in watching the documentary please see this link http://www.bbc.co.uk/programmes/b03zf3tg (apologies to my international followers if this does not work) 

So after my above MRI scan I met my friend Andrew for a long overdue catch up- thank you Andrew for being my saviour that day- it was all very impromptu as my Mum put her back out on the Monday and was not well enough to travel with me on the Wednesday and unfortunately there was not enough time for anyone else to arrange to come with me, but all was fine and I enjoyed catching up with my good friend. 

I had bloods taken last week at the outpatients department to ensure that when I go again in April, I can have the contrast MRI scan in the morning followed by my outpatient appointments and then the results of the scan as it will be fast tracked that day. I am positive that all will be fine as expected so of course I will update you all as soon as I can. Thank you to everyone for the positive vibes :) 

So before I sign off there is one more important thing I wanted to share which I was going to mention before but I didn't want to talk about things previously that I felt I was not so well educated in.

Diet- I started out using the 'David Servan-Schreiber- Anti Cancer: A New Way Of Life' book as a guide for me- Thank you to Sally for this! This has been a fantastic read to help educate me all about foods, environmental factors and lifestyle. David has first hand experience living with brain tumours and defied median survival by implementing a healthy, Mediterranean based diet (no processed foods), exercise, avoiding unnecessary chemicals and leading a peaceful, relaxed lifestyle implementing things such as meditation. You can see and read more about this book here: http://www.amazon.co.uk/Anticancer-A-New-Way-Life/dp/0718154290

Some people adapt the 'Anti Cancer' diet to suit them or add in/take things away depending on how they want to or from looking at perhaps more recent research. There are also supplements or other things you could add into your diet- currently I am not taking any supplements but I may introduce a multi vitamin (mostly for vitamins B and Omega/Fish Oils) but I like to get my vitamins where I can naturally. 

Other types of diet I have studied include 'The Rainbow Diet' and 'Ketogenic Diet'. Overall I personally aim for wheat free, dairy free, meat free and gluten free where I can and occasionally go egg free too depending on what I am making as I often need eggs to bind when I make my healthy cakes- I am always happy to share recipes! 

What works for some may not work for others but I believe it is worth exploring for a holistic and complimentary approach. I would advise always seeking the advice of your Health Professional and/or Nutritionist before embarking on any dietary changes. When I say the word diet I essentially mean a more healthy approach as opposed to the traditional concept of a 'diet'. 

A great website my Mum discovered recently was called 'Deliciously Ella'- Ella has some great recipes and you can also download her app too so I would recommend checking out this website here: http://deliciouslyella.com/ Ella doesn't write necessarily from a cancer perspective but she is motivated by her own diagnosis of a chronic condition and also to prevent other diseases which in turn keep her body strong. 

Other things which I am into at the moment include finding more natural products as 60-70% of what we put on our bodies (make up, face cream, body cream, deodorants etc) are absorbed- more so under the armpit so I am currently trying to find a aluminum free deodorant which also gives good protection! When I have found one I will let you know. The next few sites are mainly American research but you can try typing in your current products that you use and see how harmful they may be on the scale when using longer term:

http://www.ewg.org/skindeep/

http://safecosmetics.org/article.php?list=type&type=33

I am also loving oil burning with essential oils and purchased a book from 'Holland and Barrett' today entitled 'Aromatherapy- A Guide For Home Use' by Christine Westwood. I think it cost around £1.99 but you can purchase it here slightly cheaper: http://www.amazon.co.uk/Aromatherapy-A-Guide-Home-Use/dp/0951772309/ref=sr_1_1?ie=UTF8&qid=1395945594&sr=8-1&keywords=aromatherapy+christine+westwood

As mentioned previously I am going to keep promoting my good friend Mark's Just Giving Page as he will be running the Berlin Marathon in aid of my hospital's charity 'The National Brain Appeal' this September- I have added a widget to the top right hand side of this page if viewing the full website- if not you can check it out here: http://www.justgiving.com/Mark-Gilmartin1

We are so near the halfway point so thank you to everyone who has donated so far and many thanks to those who have pledged or will be pledging shortly. 

Much Love As Always,

Gem xx






 

6 Month Post Op Scan

This will probably be one of the briefest of posts I have ever written but here we go. 

Tomorrow is my 6 month post op scan-wow how that time flies. I am very anxious but mainly I just want to get it out the way, I also can't remember how it feels to have contrast injected as most times I have had a hospital stay afterwards and been very sleepy and sedated but tomorrow I'm a day patient- I'm sure all will be fine.

Mum was due to be coming along with me but she's really hurt her back so it looks like it may just be me- no worries it's got to be done and I'm just hoping to get in and out and move forward. 

I won't get my results for around 4 weeks as it just happened that my Neurologist appointment was booked before my scan was however I like to think they will let me know if anything has changed beforehand, although I am hoping this is not the case but life has taught me don't take things for granted, live in the now and above all keep smiling and positive, even when life feels hard. 

I have so much more to say but it's late and I wanted to keep this short and sweet. 

Hello to all my BB followers, family and friends. Loads of love to you all and wishing you the best of health. 

For all my future posts (and until the big day in September this year) I will keep adding the website for my friend Mark who I have mentioned is running the Berlin Marathon in aid of The National Brain Appeal, the charity who fund my hospital. Please see his link for more details, we would be more than grateful if any of you would kindly like to sponsor him and this great cause: https://www.justgiving.com/Mark-Gilmartin1/

I'll be back soon with a lot more to say, 

Lots of love,

Gem xx

In Need Of Some Sponsors

Hi Everyone,

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 

Oli and Me

Hello to my Family, Friends and BB Followers, 

So here's an update of what happened last week and where I am with everything :)

NB- Mum has asked that I increase the font so we're going Large from now on guys! 

Firstly I need to say I think in my 'Results' post I was clear but (and probably due to all the lovely drugs I was on at the time) I thought my tumour was what they call an 'Oligodendroglioma' in actual fact although I was right about my cells (stating that I have a mixed glioma so oligodendrocytes and astrocytoma) my tumour is officially called an Oligoastrocytoma. As mentioned before also I am a Grade 2.

I just wanted to clear that up for anyone who's following and is interested to know- of course you're welcome to google away but I wouldn't because as we know Dr Google can be totally unreliable and down right scary...and as for stats- don't get me started, median survival times are just that, the middle of where people start and sadly end this journey. The truth for me (and many other BT tumour peeps) is that sometimes they get it wrong as all our bodies are different and despite having the same diagnosis they just don't know. All I know is that right now I'm here and I'm living!!!

Also as mentioned before for me I have markers- I can now confirm the first one is called 'IDH1'- and I am IDH1 positive- what this means in layman terms is that I have a cell in the tumour which shows delayed growth (again going back to the Results post this is the part where I talked about the tumour not necessarily growing back). 

I am awaiting the report (long time I know!) to tell me if I also have 1p and19q deletions as this will then indicate if my tumour more long term (and if needed) will respond well to chemo and radiation treatments. My Neurologist was fairly positive that because I have IDH1 that the 1p and 19q should come back positive so for now I still feel that this is all good news in what can sometimes feel like a sea of misery (if you read what Dr Google says that is!)

So last week was my post op follow up appointment- I've officially reached the 3 month post op part. We sadly didn't get to see my actual Neurosurgeon as he's a very busy man but I did see someone within his team who was able to talk me through the op and also confirm a few things such as I do have metal plates and screws in my head- he asked me whether I heard the drill during the op and I was like "Erm No" but actually upon reflection I did and it was literally a millisecond if that- also they are tiny plates and screws but he said this is a technique that they have learnt in the last 5 years or so is a much more effective way of putting us back together again (insert Humpty Dumpty jokes here!)

I was glad to have the above confirmed as it has calmed me in the sense of why I am still numb at the top of my head. Again he said these things will take a long time to fully recover. It was at this point that he said "That's not the prettiest scar I've ever seen"- First reaction in my head was "Gee thanks Mr!" But actually he explained that some peoples scars recover better and some don't do quite as well. My dodgy 'allergic to elastoplast skin' I think probably is what has contributed to the scar not healing as well but it's getting there. He said that the hair won't grow back over the incision part of the wound/scar area but I have got some tufts peaking through around it and also for most of you that know me you know I have enough hair to go around and decorate in a way which will conceal, unless you are birdseye viewing me and then maybe you will win!

Anyways I have another MRI ordered for mid March 2014 and this will give us a clear indication of what Bertie's been not up to (hopefully nothing) but the Neurosurgeon said in a very small percentage of cases sometimes additional surgery is needed but if not I will just continue to see my Neurologist for results and ongoing monitoring. Of course I already have what is commonly known in the BT and Cancer world as 'scanxiety' but it's gotta be done and I envisage the whole MRI thing as just one of those huge walls that you can't climb over, you can't go around but instead you just have to smash straight through!

After my London appointment Mum and I had another one of our dates (we've agreed each time I have a hospital appointment in London to try and do a dinner or theatre show, or both afterwards as a little treat!) In this instance it was both :) We went to Sophie's Steakhouse for a lovely dinner- I would totally recommend this place as it had a great atmosphere and the pre/post theatre menu is such great value! It's also right near Drury Lane so really close for Theatreland!  

Afterwards we went to see the musical 'Once'. I loved it as I have seen the film and I just really appreciated how the actors put their heart and soul into acting, singing and dancing. For people who prefer more visual effects (Mum!) this is not a show for you. But those who appreciate great performance and plays etc this is the one for you! Mum felt the mics were a bit low and she couldn't hear as much so just be aware of this too but if you know the film or book you will probably have no problem in understanding what's going on! 

By confirmation from my wound nurse who I saw the following day the over granulation part is actually now healing (YAY!) the magic Haelan Cream is working and as of today I can say it's only about 1 millimetre (see picture- if we compare this to the last one where its a bit yellowy- gross I know, it's doing so well!)

I finished taking Phenytoin as of last Tuesday and it's a good feeling to know that is now out of my system. I don't know if it was psychosomatic or what but every time I tapered down by 100mg I would get this intense bout of anxiety for a day or two. That was not a good feeling! 

I am now just taking Keppra (Levetiracetam) x 2 500mg tablets per day along with my usual Thyroxine 100mcg which I take to treat Hashimoto's Thyroiditis- this is an underactive thyroid condition which I have been treated for since around the age of 17. It's believed to be a hereditary condition (Both my Nan and Mum suffer with it too). My Anaesthetist was quite interested in this (not sure why but we think he may be involved in a study at the moment which looks at the links between thyroid disease and brain tumours- I will of course up date here on the blog if I hear anything more about this).  

In terms of my moods anxiety is still one of the main things I struggle with but its not necessarily everyday it's just every now and then. I take inspiration from my family, friends and other BT peeps I have met along the way to help me cope. And Carl my boy, I just want to say you are one of the strongest and most positive people I know- He has made some of the nights where I have had a spike in anxiety more bearable and come what may he's there for me...and that's why I'm marrying him...Well not just that, he's a very good egg and of course I love him lots (coupley part over now!)

I have some future posts which I think I'll collate into my 'Anxiety Survival Guide' perhaps and also I know I have mentioned this a lot but I will get around to posting about diet...I even have a wheat free, gluten free and dairy free recipe for you which came about from someone at my local BT group- Thank you Lu!xx

Before I sign off there is one last thing that was brought to my attention last night. Its an e-petition which is demanding that the UK government dedicate more money to brain tumour research and cures. Brain Tumours and Brain Cancer currently receives only around 1% of all UK government funding. 

I have mentioned this before but if you are unaware brain tumours are responsible for the most cancer related deaths in the UK of children and adults under 40. I know it's a horrible statistic and I hate to bring this to your attention but it would really make my day if you are reading my blog right now and reside in the UK if you can please sign the petition here: http://epetitions.direct.gov.uk/petitions/55378

For my international readers you are welcome to sign but I have a feeling it's just for UK residents only- sorry! 

For more information please also see: http://www.braintumourresearch.org/

With loads of love,

Gem xxx