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

Results Day

Hello to my Family, Friends and BB followers,

Today was a very anxious day and I'm not quite sure how I held it together but I did with the help of my Mum. 

So straight to the point. In layman terms I have what is known as a Low Grade Mixed Glioma. Part of it is a Oligodendroglioma and the nasty part is the Astrocytoma. They have removed around 95% and I will have another MRI in three months. 

What this means is I don't need further treatment right now but I will need to be monitored for life and I will also stay on medications to control my seizures too. 

The gradings of brain tumours go from 1-4 so for me to be a 2 this is great news. I have markers which show it may not grow back and if so then that's bloody great news! 

If anything was to grow back then we would start the process again and go from there. I also had my stitches out today- was a little sore but certainly not painful so anyone awaiting this don't be scared it won't hurt I promise (and I'm the big baby remember?!) 

I'm shattered, I'm typing this from my bed but I'm also so glad we got this over with. I need a lot of rest and recovery now. I know I've probably been doing too much so my Speech Therapist said today I need around 3 months or so to fully recover but we'll see how I go and I'll take it from there. 

So with much ado let's crack open the champers (virgins for me clearly!)

It was my b'day on Sunday- so sorry I didn't update on that day but it was pretty stressful! My sister brought me home (probably a bit too early) and I didn't get a chance to say thank you guys. I've had so many lovely cards and flowers and lots of lovely pressies as you know! So thank you again. Xxx

Thanks so much everyone for being there for me. 

Love you all loads 

Xx Gem 

Little Update

Hello Everyone,

Just wanted to post really quickly to say my stitches couldn't come out today :( I feel sad about this but I also know they've got to heal themselves a bit better before the removal so 'cest la vie'!

I'm hoping that on Friday we get some removal of them. Naturally I'm really anxious about Friday and I'm trying not to let myself get too worked up. I just have this feeling in my soul that everything will work out and be ok. I really hope this will be my answer and I'm wishing on that one an awful lot.

I've only got one life and I've got to get on and make a bloody great go of it! So come on let's all join together for a last Bertie hug! I'm praying that the surgery removed as much of him as possible and I pray for no more grow backs or any uglies!

Lots of love

Gem xx

Ps- I clearly look wonderful in all the pics below ;)

Hi Everyone

Hello Everyone,

Just a really quick post to say I'm doing well right now but I'm still feeling in pain (little bit ouchy!) but I'll be ok!

I was going to vlog some bits of my video but time got really short so will do this again later on to show you all. 

I know I can do this and I will never back down! Not now, not for Bertie!! My god he gave a great fight but everyday I'm improving and feeling better in myself.

The stitches are coming out tomos and then we'll see where I find myself. I have my results of the biopsy on Friday in London to distinguish my tumour and we'll go from there.

I'm confident that my surgeon carried out such a wonderful operation (and I'm a bit gutted that I didn't get my pic lol but hey!) I'll be going back and this time I'll be better!! 

Thanks so much to my London team, I couldn't have done it without you all. From the Nurses to my Neurosurgeon, Registrar, Anaesthetist and Speech and Language Therapist- I feel really strong and well knowing that you all worked so hard to help me. Thank you, thank you, thank you xxx

With loads and loads of love

Xx Gem 

So Long, Farewell, Auf Wiedersehen, Good Bye!

Hi Everyone,

Here is a very quick blog to say I'm here in London, arrived around 5pm with Carl and Mum.

I'm well and feeling good about the operation tomorrow. I've met my Anaesthetist and Registrar and we've had a good old chat about Bertie's extermination! 

I've had a final MRI- it only lasted around 15 minutes this time so no bother!

I've got my markers on (as in my picture) to map the location of Bertie! 

It's an early rise tomorrow to start the op and I hope within the next 24 hours I can give you all news on the situation.

With lots and lots of love for now!

Gem xxx

The Great Send Off- Part Two

I spent last weekend having a mini Bertie send off with my best friend Jo and my sister Holly. So when my op was pushed back last week we all thought why not have another Bertie send off part two!! 

The other reason is that it's my birthday on the Sunday 27th October so there is a small possibility that I might be in hospital still but we are hoping that I am let out on that day (woo hoo!) but just in case I again have been spoilt with love and kindness and a whole lot of laughter medicine to send me on my way and birthday magic- I'm like the Queen!! 

I saw my wonderful friends Georgia and Andrew on Friday night and we had a lovely catch up- they were due to be my 'hospital angels' on that very night so we figured if you can't beat 'em join 'em and had a meal together instead. Love you both loads and thank you for being there for me. Xx

Jo and my sister proceeded to get very tipsy (blind drunk!) on my behalf on Saturday night. I had a small glass of prosecco watered down with a lot of soda water as I'm not really allowed to drink anymore as you know but it was basically a 'magic lemonade'! (I hope my surgeon doesn't see this but I'm sure he wouldn't mind too much as it is my birthday!) We had lots of fun and a v late night! My latest in a long time but I really enjoyed myself! It was also fun to bump into some of Jo's boyfriend's friends and find out that one of them had read my blog! 

It's bizarre when people tell me they have read my blog as I feel like at times I am the ghost writer, writing this on behalf of someone else and then I am like no this is me, this is life right now. I've mentioned this before but because I still look, sound, act and am me it's like it isn't happening at times but it is always there in some ways and you can't let it beat you hence why I'm determined to still do what I would have always done with a gemmy twist! 

I was so touched on Sunday when my lovely friend Lucy arrived as a surprise. She was like a Ninja as she had so sweetly tried to surprise me but I had already made plans for a dinner with Jo and her family so I couldn't see her. Queue me leaving the house and my Ninja warrior friend hurtling round the bend and into my arms for a huge hug!! I was a bit overwhelmed and then teary (it's allowed!) Lu left me with a pressie from her, Debbie and Nicola (my Uni 230 girls!) for my birthday. When I got home Lu and I Facetime'd and she said I should open it so I did :) There were lots of lovely Cath Kidston goodies, Bliss smellies and a gorgeous ginger scented perfume by Roger & Gallet which I am in love with- very autumnal. Thank you girls so much :) 

I will so be the best smelling lady on my ward with all the lovely bits and pieces I have to take in with me :) 

       

I've got to say it again- thank you so much to all my supporters and followers. Your love and kindness makes me even more determined to see things through and to beat this.

Lots of love,

Gem xx 

Ps- apologies for any font changes on my blog- it seems to have a mind of its own! More reasons for me to get up to 'mega' blog status and purchase an Apple Mac so that I have more editing control!! Xx

Friends Are For Life and Life Is For Friends

Hello everyone, 

So today I want to take the time to say a massive Thank You to all my friends!

You have been so fantastic and supportive. I really do not know what I would do without you all. 

The support and love is constant. Everyday I have emails, cards, txts, whatsapps, snapchats and Facebook messages with you all and it really is the most amazing thing. 

I haven't mentioned this before but my first 48 hours after leaving hospital I was showered with messages of support and my Mum's house where I was staying became a florists! It was just so overwhelming to know you all care so much. 

I always knew my friends were awesome but when a crisis strikes that's when you need them and I feel so blessed. 

I said it before but I really have so many wonderful things to look forward to :) 

I'd like to make a special mention to my friend Nic who sent me a wonderful package of loveliness yesterday packed with so much positive spirit it was fit to burst! 

She enclosed this card about friendship and this got me thinking about you all. 

I love you all so much and I'm looking forward to seeing you all soon.

Xx Gem 

Operation Update

Unfortunately we got the call to say that my operation will not go ahead tomorrow- Weds 16th October as an emergency operation is needed for another patient.

Obviously it's tough as you mentally prepare but also I think what must that patient or their family be going through right now and if this was me or my loved ones we wouldn't want it any other way.

So we're scheduled for next week now on Weds 23rd Oct. Again I will probably be admitted the day before for the final MRI for tumour location and away we go. 

So I'll be here at Mum's for a few more days. Carl arrived in anticipation last night for me being admitted today so at least I get some time with him today instead which isn't all bad at all as I've missed him a lot- operations are a logistical nightmare to plan at times!

Xx Gem 

Getting Ready

Hello Everyone,

I had a nice weekend getting myself ready for what is ahead. 

I have so much to do today- I need to pack my things ready for hospital and get all my bits and pieces together. 

I will get a call tomorrow around midday to let me know that I am being admitted and they are ready for me. I will be having another MRI scan tomorrow for final location of my tumour but I'm ok with this now (more so than the last one) as I know what to expect and it will hopefully be shorter. 

Saturday night my best friend Jo, my sister Holly and I went for a nice meal- I'm meant to be being super healthy at the moment (I will be blogging about this in the future) but to be honest we were going by the rule of "a little bit of what you fancy does you good". Now I'm not sure giant ice cream sundaes count but what the heck! Jo was a little disappointed when her pancakes arrived as obviously the 'Ferrero Rocher' sundae trumps them by far!! It was pretty sickly though so barely ate a third of it!! 

Sunday I got some more essentials from M&S (not sure if luxury eye make up remover is really needed for hospital) I also had some lovely chats and txts with my friends and feel so grateful that I'm blessed with such a group of lovelies- your spirits keep my spirits going! Xxx

I would like to say thank you to Sally (and Patrick!) who so kindly bought Mum and I a pedicure each to have at home :) yippee! Thank you for all the support you guys have given us. Xxx

There are so many lovely things to look forward to when I am out of hospital :) 

I am going to do some vlogging (video blogging) today regarding my feelings before the op and possibly whilst I'm in hospital so that you guys will be with me the whole way. The genius that is my lovely boyfriend Carl can then hopefully edit this for me and I will post up here. I think this will be good as I'm not sure how up for typing I'll be after the op etc so I'll just chat away and that way you're still all up to date with my journey.

So looking forward to getting this out of the way and seeing you all after. 

With loads of love,

Xx Gem 

Hit The Road Bertie!

So yesterday I finally met my new neurosurgeon (He's pretty much the nicest man you will ever meet!) He also looked me in the eye and told me he's going to take very good care of me. This to me is all an excellent sign. 

He confirmed a few things which unfortunately we were not really told before so here we go:

Bertie is growing in my brain so he's actually my brain if that makes sense but he's gone bad! This obviously means the op is a little complicated because they are removing an actual part of my brain. If Bertie had grown on my right it would have been a much more straight forward op, but this is me and of course that bastard Bertie is determined to make things difficult but we won't be deterred by this! 

Bertie is about the size of a grape as we know so not too large right now but I will have to be awake during the operation as a speech and language therapist will be checking in with me the whole way to ensure I'm not losing any key functions as my left frontal lobe is an important part of my brain. 

The tumour is likely to be what they call an astrocytoma but we have to wait for the biopsy after. My heart sank when I heard this as a doctor that I saw once at the beginning of this journey said "Gemma you'll be fine with what you have- it's the astrocytomas you have to watch out for they are the killers!" As you can imagine when those words left his mouth I was like "Oh my god!" but one of the questions we asked was about the likelihood of it growing back and he said it won't necessarily do this and obviously I will be monitored through MRI scans for life. 

If the biopsy confirms the grading is higher than a grade 2 then I will have other treatments like chemo and radiotherapy but if not it'll be watch and wait and me living my life! 

So the op is scheduled for next Wednesday 16th October. I will go in on the Tuesday to have my final MRI scan to help with the location of the tumour for the operation and then away we go. 

In some ways I am scared of course but in others I'm excited as this means we're getting the action going now, Bertie is leaving me and also think of the stories I can tell you all after as I'm sure there are not many people that get to experience this in life! I feel like I could do any thing after! I told my surgeon that I felt I was the least likely person ever to have this operation as I can't even watch Holby City or Casualty! We did laugh about this and I feel really proud of myself for at least trying. 

I am hoping to blog most days after the op if I can to let you know how I'm doing and it's good for me to keep this up as a sort of diary so I can review how I am feeling. I can already look back and see how far we've come and also how much things have changed or differed now from the earlier posts I have written. 

As you know I had a second opinion and that is everyone's right- never give up, never give up hope and crucially never go ahead with something like surgery unless you feel confident in your surgeon. I am so glad I have my surgeon now, he is wonderful and maybe he will let me get a cheeky photo for the blog after recovery ;) !!

So here we go...I told you Bertie has his bags packed!

Lots of love,

Gem xx 

Family

Following on from Friday's post I am feeling a lot better than I was. I am still understandably anxious about the future but I am putting Friday down as a bad day and also something which has happened now and is in the past. As the title suggests my family have pulled me through and helped me a lot since Friday. 

Family are so important to me. I like to tell my family I love them, spend time with them and have fun! When you get diagnosed with an illness all the silly things you used to worry about become pointless and you remember all the times you delayed spending time with your family for perhaps a work or other commitment and you ask yourself why?! Life's for sharing! 

I have spent a lot of time with my niece and she is just wonderful. She makes me feel so happy. She is so innocent and it's lovely to sit for a while and observe the world through the eyes of someone who is 20 months old! 

I'd like to make a special mention here to my friend Shiv. A lovely package arrived for me on Saturday- I was very intrigued indeed! When I opened it Shiv had put together for me a wonderful selection of goodies to ensure I have a totally glamorous hospital visit and a relaxing recovery. Thank you so much to Shiv, Mike and the kids for sending me such a thoughtful gift. Xxx 

Another mention now for my Mum. I know it's not easy at times because lets face it living back at home when you're 28 isn't ideal, and when you're not well and emotions are all over the place it's certainly no fun but despite this you are constantly assisting me with all things medical (ever the pragmatist!) and you're a hero. Xxx

I have a consultation on Tuesday with my Neurosurgeon. As you may know I have been undergoing my second opinion in London. Tomorrow (well today as I'm fiddling about with editing!) is the first time I will have met my new Neurosurgeon. After several calls and emails I am looking forward to getting the final plans in place for the operation. 

Bertie knows he's got to get the bags packed again and we've reached the crossroads now- I have an illustration courtesy of Carl so will post this here tomorrow! 

Night, night 

Xx Gem   

Bad Day

I don't know how to start this one as I hate my blog to be downbeat or depressing but it has to be from the heart and I want it to be honest.

I don't know what I was expecting of today but it wasn't the best. Bearing in mind the last scan I had was 2 months ago when I was out of it with lovely medication, I think I had somewhat thought today I would just sail through.

An MRI scanner is like a small, snug tunnel which you are slowly moved in to. I had my head secured in a box like brace also so that my head was still. I had this little mirror above my eyes like a rear view to help me when it was time to complete the tests to map my brain.

I was in the tunnel for 1.5 hours straight and by the end my legs and hands were numb. You can sort of shuffle in-between scans but very lightly as not to disrupt the positioning. I was mainly fully in the scanner with some of my legs poking out. My previous memories of my scans were fine but as above the medication I was taking at the time made me oblivious to my surroundings. 

I was trying to use my meditation but for some of the tests I had to 'not think' if that makes sense so that they could test my brain functions. I had a button in my hand which I could use at any time but I knew this would mean we would probably have to start over and I just wanted to keep moving on. 

I think my expectations for today were that I would be in the MRI for maybe half an hour which if so I think that would be more manageable. I know in the future my scans will be a lot shorter as it will be checking and not necessarily testing. 

I think it got to me the length of time today and I had a freak out and thought but what if I can't handle this how will I make it through the op and after- I hate feeling this way as I am trying my hardest to be positive. I really broke down when I got home and Mum has pretty much had the brunt of it- I'm so sorry Mum xxx 

Today was the first day I've felt truly "stop the rollercoaster, I want to get off" but maybe that is because the op is looming. I also hate that I had such a wonderful day yesterday and today was not so.

Another part to today's story is that we now know that the craniotomy may have to be awake- this has been my fear for a while but I'm hoping once I have seen my consultant next week we can review this again and I will be reaching out to my Bertie buddies who have been there and got the t-shirt for reassurance and support. 

I keep telling myself it has to be done, there is no other real option but I'm full of fear today. I want to still be me after the op and I'm scared that Bertie is taking over me and my life. Today I hate brain tumours and I hate cancer. 

I haven't had a reaction as strong as this so far so I think it is important to blog. 

Tomorrow will be another day and I know that I will get through this. I love my Carl, my family and my friends. 

NB: Anyone who is awaiting an MRI I hope I have not worried you. The overall experience is not bad I just think several factors got to me today and the duration was testing.