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

Magic Sunbeams and Haelan Cream

Hi Everyone,

Today's post is an update of where I am currently.

I am pleased to say that the cold has properly gone now - yay!

Secondly my surface wound was re looked at by the wound nurse on Monday 6th Jan and she felt that the silver nitrate treatments were not really working- she has officially diagnosed the area (which is only around 2 inches or so) as what they call over granulation- what this means is the bottom layers of skin are rising above the top layer and not letting the top layer of skin heal properly. Apparently this can be quite common but where you are told by the hospitals- "Do not touch the scabs, they will leave when they want to"...this means that over granulation can be harder to spot as it sits under the scabby parts. How I knew it was not right was by the gunky look and feel and bit of a smell (sorry if TMI but just in case anyone else is dealing with this currently!) Never be worried to see a GP, Nurse or speak with your specialist nurse/team to check this. I had to have around 3-4 appointments before this was actually diagnosed and sorted as over granulation cannot heal itself purely with oral antibiotics, it almost always requires a topical type of treatment. It's not a serious condition by any means but it does require treatment.

As I am roughly 11- 12 weeks post op now the wound should have healed but as the conventional silver nitrate treatment hasn't worked I now have a topical cream called Haelan Cream to help the process. So far so good and I will see the wound nurse again in a few weeks to check if it's all worked. Just to add the rest of the wound has apparently healed very well so we just need to get this part sorted and then we're good to go!

The below picture just shows at the top the magic cream and below picture on the right hand side is the patch where I have over granulation- as I say only around an inch to two inches- the rest of the wound is all doing fine!

Something the specialist wound nurse recommended doing was washing my hair with a mild shampoo or better a baby shampoo- nobody had mentioned this to me previously so for anyone after surgery when you are allowed to wash your hair make sure you wash your hair with a baby shampoo!! This may sound like common sense but when I could wash my hair again around 2-3 weeks post op I just used standard shampoo and conditioner but baby shampoo is supposedly much better for you.

So last week I also had an appointment with the Vocational Rehabilitation team at my hospital in London. They are quite a unique service which is just starting out but they are there to help patients with the transition back to work. As this was my second appointment we agreed on a draft letter which will be sent to my employer. In the letter there are recommendations for what I need to help me return. It's all pretty standard stuff which you would expect such as making sure I have proper phased return hours (with the hope to build back up to full time but this will be assessed), fatigue monitoring, shadowing colleagues or having an assistant to help me initially and making sure I have structured breaks and an hour long lunch break within my day. I am hoping to return to work in February so I will keep you all posted as to how this goes.

My next hospital appointment is 23rd January and this is to have my post op assessment with my Neurosurgeon and to review how everything is going. It is likely then I will be released from the surgery team as I do not require any further surgery currently but I will continue to work with my Neurologist and Specialist Nurse who will monitor me. I am not having an MRI before the appointment on 23rd Jan- I thought I would be but I think they will be using the MRI I had before I left the hospital so the next MRI is likely to be at some point in the early part of this year but hopefully they will let me know more about this. 

So where I live we've had a bit of flooding (I think a lot of people living in the UK are experiencing this right now) but Wednesday was a wonderful sunny day and I took this picture in my living room- I don't know what it is but I always seem to get these great beams of light in that room and I think they look magical. I like this time of year when its a bit cold or crisp as it gives me the chance to
wear some of the hats I have in my beret collection :) I love a good hat!

Lots of love,

Gem

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 

Being Back Home Update and Brainstrust New Research Figures

Hello everyone,

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

Going Home

Well after 6 and a half weeks staying with my Mum, tonight I make the journey back to my place and my lovely Carl.

I'm a mixture of emotions- I'm sad to say bye to my Mum, the round the clock care and all my Surrey family and friends but I am also really excited to see my Carl, his family and also to get back to my own flat. (Carl this is your pre warning so you can spruce the place! ;) )  

My life has changed in many ways and I'll never quite be the same as 'Gemma Pre Brain Tumour' but also we don't know how long I've been living with Bertie so in some ways maybe this is now the start of the 'New, Bertie-less Gemma'!! And she might be a real star! 

So I'd like to say thanks to my Mum and everyone in Surrey who looked after me. Thank you to all my friends who visited, txted, sent cards and all sorts- loves ya Xx

I bought Mum some flowers and a little card as pictured to say thank you today! Xx

I'll be back to stay in Surrey in 3 weeks for my Neurology appointment where we will be adjusting my anti seizure meds as I'm currently cross tapering on to a new drug called Keppra (and coming off the Phenotoyin). 

These are the drugs I will need to stay on for life as I am technically in remission (although there is no actual 100% cure for the intrinsic tumour as I have mentioned before) and removal of brain tumours can also cause seizures so we have to take precautions just in case. I also want to prevent seizures too as I am keen to drive again one day. 

I will see a Speech and Language Therapy Team either this side of the year or early next year and as mentioned I will be MRI scanned in the new year so that when I meet with my Neurosurgeon he can give us an exact on how much of the tumour was removed as the MRI I had before I left hospital showed around 95% but in the new year the swelling should have settled down and we'll know. 

I'll keep you all updated and I'll keep the blog posts coming. I have a few ideas about the things I have been doing post op and who knows I could make another vlog to discuss other things related to Bertie.

Thanks for reading,

Lots of love

Xx Gem 

Awake Crainiotomy Experience- You Tube Vlog

This post is about my awake craniotomy experience and is for my friends and family and any of you who are currently about to undergo this. I promise it's not scary so take a look! Feel free to leave me comments here or on You Tube.

Apologies for my appearance! I still have a lot of swelling and bruising around my left eye and my scar means my hair isn't too hot and I'm wonky faced!! but I think I'm not doing too badly considering it's been just under three weeks now.

Lots of love,

Gem xx