Thursday, 29 August 2013

Thanking Yous

Thank you to everyone who has been in touch and kept me positive this week. I love your whatsapps, snapchats, calls and txts- it means so much to me and helps me to feel normal. 

Thank you to my other little sister Katie. She sent me a lovely hug poem card to keep in my wallet with a beautiful card. I did the latest thing and sent her a snapchat to say thanks! I'm down with the kids!!

Also to my lovely Em's who I know from the old school Connexions days thank you so much for your lovely card and the pictures from your two gorgeous boys. I'm currently looking for a good space to display the mini Picasso works of art!

Em also I have been thinking about this a lot too...I love Edward Monkton soo much! 




P.s we've had over 1000 hits now!!! Can you believe it?! And it's international- currently 8 different countries are checking out my little Bertie blog! :) 

Happy Friday 

Lots of love,

Gem xx 




Jo's Guest Blog



Charlotte: Samantha you look so pretty today!
Samantha: Thanks. I have cancer.

I’m so glad I met my best friend when I was sixteen, so young and so much ahead of us. Before college, friends would drift,but now it appeared I’d met my life long buddy. Laughter,tears- hey we even handed in a resignation on the same day;although that says more about Thorpe Park than us!

Brooklands College, WeybridgeSeptember 2001 sets the scene for the adventures of Gemgems and Jo. We’d both met the love of our lives (ha), embarked on distant journeys (Benalmadena and Faliraki-sorry Gemma's Dad!) and thought we were complete party animals (minus the drugs – we were both far too sensible for that!!) A freebie trip to New York and copious nights in Oceana sealed the deal for our eternal friendship.

Throughout the years Gems and I have both had our ups and downs; break-ups, make ups, illnesses and tough family situations, not to mention struggles at work or whilst studying;one consistent feature in our journey has been the comfort of a best friend. So close we both took a year out before university to enjoy more time together – before Gems decided to swan off to Italy – however I was swiftly following on her trail.

For the duration of uni and at points afterwards we have gone for months without seeing each other, and sometimes even weeks without talking, this has always been safe in the knowledge that as soon as we’d see each other again or one of us needed the other, all would be where we left off. That’s what best friends are like.

The above has always been my theory, and after a stint a few years ago both finally finding ourselves back at our parents in Surrey again, it was when I realised just how much I’d missed the presence of my beautiful Gems.  The Sex and the City nights began, a Tuesday weekly ritual at Daph and Dave’s(my parents). I always saw myself as the Samantha and Gem prided her style on a Carrie copycat.

It wasn’t until the 6th August this year when we realised we’d got this all wrong! Like a punch in the stomach I received the devastating news that the sassy strong Samantha character who so bravely fought cancer in our beloved boxset was in fact Gems!

"Sex and the City: Catch-38 (#6.15)" (2004)
Samantha JonesLike it’s my fault! I shouldn't be punished for not having kids. I should be rewarded! Since when did kids become the Get Out of Cancer Free card? He's basically saying that I'm a whore who deserves chemo!!
Carrie BradshawNo, I...I don't think that's what he was saying.
Miranda Hobbes: What I don't understand is…if they got it all wrong, why do you have to have chemo? 
Samantha JonesBecause he's an asshole! 
Carrie BradshawApparently there could be something microscopic... 
Samantha JonesLike his d**k! 
Carrie BradshawI'm sorry; do you have cancer or Tourette’s?

The overwhelming helpless feeling when someone so young that you dearly love becomes ill is hard to explain. First come tears, then the fear, then above all the anger at this unfair situation. I’ll send flowers, visit, but nothing can stop the want to turn back the clock and take away all the pain. The one solace I have in this situation is the strength of characters surrounding this wonderful person. One thing Gems is not short of is people to confide in – and confide she will! ;)

We are only at the beginning of this next journey together, but I will be here for you 100% of the way providing strength and a shoulder wherever needed. Feel free to use and abuse! 

Most of all, as I know this is Gem through and through, I will provide humour wherever possible – a smile and a sprinkle of positivity can do wonders for the spirit. I am also an excellent events manager so as soon as she is well enough we will be embarking on our ultimate lifetime adventure… Ibiza…watch this space! 

All my love, forever and always Gems,

Jo xxx



Wednesday, 28 August 2013

"Om Love...Life Begins at 200"

These are two things I Iearnt today whilst in my meditation class. Om Love is a word which we used whilst visualising good things. Apparently all our bad emotions are vibrating at a level below 200 (worry,stress,despair,desire etc) and we need to try and aim to go above 200 (on a scale which goes all the way up to 1000. 500 is love by the way so this is also a great place to reach and be! Being in love and thankful for life each day can help you achieve this) Apologies if this is not making sense but stay with me.

I had a great time today and I would recommend meditation to everyone! Our lives are so busy and full of stress, worry, panic, anxiety etc (living below 200) and it's so important to realign and centre yourself from time to time so your body,mind and spirit are in tune. I'm not just saying this from my current viewpoint but because slowing down once every day will really benefit your health in the long term. 

I know a lot of you are stress heads ;) I can name 3 people I have spoken to this week already who have told me they are stressed so please promise me you'll give meditation a go. You can try something on you tube or try the app I recommended called calm.com- Here you can set a guided meditation for as long as you like 5,10,15 or even 30 minutes. If you can why not try a class? 

I also learnt about positive affirmations today. It's good to give yourself an affirmation at least once a day and repeat in times of stress. For me today it is "my body has the ability to heal itself if I allow it" ok the science in some of you may disagree but ever heard the saying "mind over matter" well the mind is a powerful thing and staying positive in any situation is very important. Here's a nice one I want to share with you all because it's so true no matter what you are feeling right now:



Sending you all lovely calm meditation hugs and looking forward to hearing from anyone who takes my advice :) 

Xx Dr Gem (not quite!) ;)  

Tuesday, 27 August 2013

Routine Stuff

I was at hospital today for a pre op assessment. I don't really like going to the hospital for obvious reasons but I have to say all of the staff are fantastic, keep me calm and share a few laughs with me (Especially during the tests with a tuning fork and then me asking how exactly do I 'clench' my jaw- I just couldn't remember how to do that when asked on demand!) I also had my wonderful Carl and Carl's lovely Mum accompanying me so I wasn't lonely or short of hugs when I needed them.

I am awaiting my psychological tests and some additional information before surgery goes ahead so I will update here as soon as I can. Bertie knows he's on his way out soon and needs to start packing his bags...

I'd like to say a hello to a lovely couple Adam and Rikka who we met today whilst waiting in the neuro reception. Adam and I are both under the care of the same neurosurgeon. It was lovely to meet you both and also nice to speak with people in the same age group, it is also bittersweet as I wish that we never had to meet under these circumstances but I hope we can keep in touch. Good luck guys and wishing you well for surgery.

Xx Gem

Monday, 26 August 2013

Guest Blog

Hello Guys,

I am throwing this out there to see if from time to time anyone would like a guest blog on my Bertie page? It has to have some humour or relate to some fun we've had together or a good memory as the laughs keep me positive and smiling. If you are interested email me your story or post to: geminigemgems@gmail.com 

My wonderful bestie Jo will be kicking us off and I will post her's here in the next few days. 

Xx Gem 

Sunday, 25 August 2013

Wonderful Wedding Weekend

Carl and I had a lovely time at the wedding of his best friend Dave to the beautiful bride Sarah...here are a few snaps of the (Very!) Best Men (who gave one of the best speeches we have ever heard!!) with the groom, one of the fabulous table decorations and a snuggly one with Carl and I (Awwww).


I wasn't sure whether I would be able to make the wedding but I'm so glad I did as I had such a brilliant time. 

Lots of Love,

Gem 

Friday, 23 August 2013

Highs, Lows and Everything Inbetween

So I won't lie the last couple of days I have felt a bit deflated. I've read some info, learnt more about what I'm dealing with (good and bad- sometimes too much knowledge is not always a good thing) and just felt a bit down.

My Nurse tells me that this is completely normal and its like a grief cycle in which you spin around at a rate of knots. I can be fine, happy and smiling and then I can break down. Luckily the latter doesn't happen so much but it's hard not to be a little overwhelmed at times. 

I have been having a few twitches too mainly in the evening and we have decided that my medication needs adjusting to suppress those pesky seizures as I fear those more in some ways than I do Bertie.

I am also in the process or giving up my license and becoming a 'public transport' user and walker- I miss my lovely Mini so much but hey hum its not all bad- I get a free bus pass don't you know!

Thank you again to everyone who has been in touch and lifted my spirits- I am eternally grateful for your support. I can't imagine what it must be like to support a person through this but you have all been so amazing in your own ways. I've had txts, phonecalls, a FaceTime call from my lovely Auntie Kiki and her family who are currently holidaying in Cyprus (if you're reading this btw get back to relaxing as you're skewing the stats I'm getting for my international readership- yes my story has gone global!), whatsapps, snapchat (still very new to me!) and just so much support from all sources.

Special mention today to my lovely sister Holly who has treated me the same since day 1, sends me inappropriate messages and tells me "You must be loving this" in the style of Mark Corrigan from Peep Show when I ask for something- lol I love you!

I have been recommended to try meditation. I've signed up for a local class so I will review this once I have been to my first session for any of you who are considering this. So many people have told me how important it is to keep positive but also to escape via relaxation from time to time and I cannot agree more. I'm really looking forward to this.

As I mentioned earlier I have been reading a few bits and pieces from Macmillan and The Brain Tumour Charity. This has been great. Sometimes though you are crying out to speak to someone in the same age group who can relate to you and just be on your level. That's one of the reasons I started this blog as well as to perhaps help anyone else who is going through something similar or supporting someone. I guess you just want to be as normal as possible and it's hard because for a short while I am in a limbo situation but we will get there!

My long term goal is to be in a position to help other young people (I know I'm heading for 30 but I still feel young!) dealing with Brain Tumours so who knows maybe we can make that happen??

Ok so I will leave you with my collage of my things from the past few days- literature, fun things- I will not stop having nice nails and could not resist this little Gem from OPI (it's called Polka.com), a lovely Cath Kidston inspired present from my lovely Carl and apps from the app store which are helping me. Calm.com is so relaxing and Rdio is a fab free way to stream all your fave tunes in one place- seek and you shall find!


Lots of Love,

Gem

Wednesday, 21 August 2013

500 Hits Of Bertie!

Wow just have to add a quick post to say I've hit over 500 hits- I can't believe it...my little blog! Thank you to everyone who is reading and following my journey. I will be posting again very soon :)

Just a quick question do the comments sections work for everyone? I need some feedback!

Xx

Gem

Tuesday, 20 August 2013

Bertie's Plan of Action

So today went ok- I was of course nervous as I mentioned but I got there.

There was a huge traffic situation on our way there (thank you Bracknell you beauty!!) I was a bit shouty at Mum because of this- Mum I'm sorry- I love you! Xx

After a stressful journey we finally arrived. I met my Neurosurgeon and a new Neuro Oncology Nurse.

I have no idea what I was expecting but I'm squeamish at the best of times and my brain (Bloody Bertie) had dreamt up all sorts of scenarios about what I would have to look at like giant MRI images and all sorts (I can't even watch Holby City or Casualty!) but actually it was much more relaxed than this and I was brave and looked at the pictures and discussed it all without looking away once. It's actually fascinating to see whats all going on in there! I know some of you were worried there might not be much activity in my brain so that's a relief- I do have one...although common sense may never be my strong point!

My neurosurgeon believes I have a grade 2 tumour and there is a slight possibility that grade 3 is in there (the grades are 1-4) but let's all hope for the best. I was under the impression it was grade 1 from the start up so I was a bit shocked but it is what it is and my Neurosurgeon said if he finds a grade 1 in there after all, then that will be a result! As I say let's hope for the best.

So that takes me to my options:


  1. I could watch and wait- I'm not sure how it would be to live like that and not sure how I would feel if we did this and Bertie got worse.
  2. A biopsy of the tumour- this may mean the surgeon can only look at so much and it may not reveal everything but it would be a start to seeing exactly what we're dealing with.
  3. A removal of 95% of the tumour and to monitor my recovery and keep an eye on things much like watching and waiting but with the knowledge that Bertie Bastard is much smaller and doesn't have as much control! He knows I'm winning! (My artist's impression courtesy of Carl!)


I didn't have to think about it. I know I want option 3 and I want him taken out. Yes I'm scared but its got to be done. Think of it this way I will be asleep and it will be worked on and he'll be well on his way to sodding off! 

So there we are folks that's me for now. Thank you everyone who has sent me messages of support and texted me, called me and been there today. I had so much strength knowing you're all behind me. I'm sorry if I haven't returned your message or call yet but I'm absolutely exhausted and heading to bed pretty sharpish so I will get back to you- bear with me.

All my love,

Gem xx 



I'd Rather Be...

So it's consultation day tomorrow (actually today) and right now I'm thinking I would rather be anywhere but here (scardey cat)...not that I can think where though- maybe a Beach? Spa- yes please! Spaceship on my way to Mars??


I know it has to be done but I'd rather not...the procrastinator in me wants more time. 

Xx Gem 

Sunday, 18 August 2013

'Life's A Beach'


This is my philosophy right now...


Now this one has a little story behind it. 

In September last year Carl and I along with my Mum and her partner Rick had a little break to Exmouth. There was a day where we drove out to visit some extended family in Brixham and we stopped at a lovely little shop in the harbour. As I pottered around I spotted this cushion by Shruti. I fell in love with it for several reasons (I'll come on to that later) but also just the message- I love it. We were a bit rushed for time so off we went and I didn't purchase it :( 

I thought about the cushion a lot and the message because 'Life really is Beach!'
sometimes.

I found the cushion again online and it sat in my eBay wish list for a while. 

So recently as I mentioned on my last post lots of people have supported me in many ways and my Mum's partner Rick, his lovely Aunt Nina sent me a letter and this was enclosed in a box! Let me tell you I had tears in my eyes when I opened it because it encapsulates every emotion I feel right now and also it makes me smile, the play on words and it just sums up my current attitude to everything. 

I didn't have such a great night last night- night times are when I think about things too much as its your quiet time so I got my cushion and propped it under my head- it definitely helps that it's so cozy and soft! It helped me sleep too, the best night in a while actually.

Now on to the other reason I love the cushion. I am a huge Family Guy fan (thanks to Carl!) and there is this sketch that Stewie and Brian do and it never fails to make me laugh! If you're looking for a laugh right now then please check this out: 

 


All my love,


Gem xx 


Bertie Finally Reveals Himself!

I'm sorry for the funny title but I wasn't sure how else to go about this one.

Well Sunday 4th August all started pretty normal. Bit of a lie in, time with my beloved Carl and his family. We spent some time with Carl's grandad who was very unwell and this was a very sad day indeed but also lovely to have such precious time all together. I am so lucky to have such a wonderful, extended family through Carl.

We went out for an evening meal as it was actually our anniversary too (7 years!) with Carl's Dad and his wife. We had a lovely meal, laughed, good food and fun. I had a glass of prosecco but nothing too crazy for a school night. We got home around 10pm and I must have gone to bed around 11:30pm ish.

I awoke around 1am with a paramedic stood over me, totally confused and really quite scared. I'd had my first seizure. What happened next was basically another x 3 seizures, x 2 trips back and fourth to a&e, a visit to my GP in between as they wanted to schedule an EEG (at this point we thought it could be epilepsy) but then my 4th seizure (grand mal) happened in a&e and the wonderful staff there decided something was amiss and I had to be MRI and CT scanned. My lovely Carl was also on hand to tell them how out of character this all was, I have never had a seizure in my life and I cannot thank him enough for being there with me.

I'd had a slight headache before going to bed on the Sunday night but nothing major so I thought nothing of this. 

I couldn't help but think at this point thank gooodness the seizures happened in my sleep, whilst resting and not somewhere else.

After my scans I was admitted to what they call a 'Clinical Decisions Unit' whilst they looked at all my results. I had a couple of cannulas in both arms with anti seizure and fluids pumped into me. The ward staff were absolutely fantastic. I would like to say thank you so much to the staff of a&e and CDU at the Royal Berkshire Hospital, Reading. I cannot thank you enough- you were all wonderful. You talked to me, kept me calm and gave me good care.

What happened next was pretty crap I won't lie. My mum and sister arrived and I knew vaguely that a tumour had been found (I was pretty out of it as anyone who has experienced seizures knows they make you feel like you have run a marathon a dozen times over and many of the above events have had to be retold to me a few times).

I'd bitten through my tongue too so imagine me tinged with like a Bruce Forsyth effect- it was very surreal.

My neurologist and doctors came and visited my ward and they confirmed my brain tumour and told me that it had all the markings of a low grade glioma however a biopsy may be the next step forward to confirm this. I felt like I'd been punched in the guts, I couldn't accept it, 24 hours earlier I'd been perfectly fine- WTF?! These were all my first thoughts-  it wouldn't compute or process in my mind. There were tears, many of them and it was just not good.

One thing here to mention though as well is that my neurology team did not dress things up, they told me how it was but in a supportive way and made me feel that there was hope and options which is what you want and need to hear.

A funny thing which we discovered at this point is that Bertie is growing on my personality so all the weird sensations and feelings I'd been having are likely to be caused because of Bertie! As I keep telling you all he is a complete bastard!! 

A few hours later I met my first Neuro Oncology Nurse and she was nice. She is there to support me and to help me when I have questions or just need to vent and ask things. I will now be referred to the John Radcliffe Hospital in Oxford.  

So after the above I stayed in hospital for the night. As my diagnosis is underway now I was released the next day on the Tuesday with a few provisos:
  1. I must take anti seizure meds for life to control the potential seizures- even removal of a brain tumour can leave scarring which can cause seizures (so this sort of contributes to no.3)
  2. I mustn't drive for a minimum of 12 months , and those 12 months must be completely seizure free- this was hard at first because I pretty much adore my lovely Mini and im always happy to be the designated driver but I've come to terms with that now. She is metal and also Mum's promised when I'm well again I can have another one or something better (cheers Mum!)
  3. No alcohol or a minimum of one glass very occasionally- ok so I'm not a major drinker as you know but I like a blow out especially with those of you who encourage me (you know who you are!!) so this is a bit blurghh- especially when you are given news like the above you fancy a few I can tell you but I'm sure we'll manage! Bertie cannot take away my love for life and Ibiza for my 30th is happening bloody like it or not!! Drinks or not!! 
So that's really where I am about now. I want to shout out to all my friends and family who have supported me, cried with me, hugged me, called me, sent me cards, sent me flowers, given me gifts, told me words of wisdom and said "Sod you Bertie you can get lost!". I'll say it again I love you all and I wouldn't be able to do this without you all behind me. 

With love, 

Gem xx 

Friday, 16 August 2013

In The Dark About Bertie

So lots of you have asked me to date did I have any symptoms and I have to tell you, no I didn't really. The one thing I did speak to my GP about was feeling a bit "weird" like I was having too many thoughts or like I couldn't make a decision as simple as chicken or steak (I'm crap with decisions though at the best of times so hardly an excuse!)

Carl and I talked about the above and we couldn't make sense of it. My GP was also trying to treat me for depression and anxiety but I just felt like there wasn't a 'reason' for this and I was dubious, I just could not understand- again my brain would be questioning (this will all make sense in my next post) I am a supporter of all things mental health and believe in acceptance and treating, but this just felt different and Mum, Carl and I now can make sense of some of the weird things I was going through.

On that note I've had a few discussions with friends who have felt very worried about the lack of my symptoms and have wanted to jump straight into an MRI scanner to check themselves. First things first brain tumours are rare. There are around 9,000 people who are diagnosed in the UK each year. If you think about all the people who inhabit our lovely isles (62.74 million to be exact) that is less than 0.5%. You can read more about those facts here from Cancer Research UK: http://www.cancerresearchuk.org/cancer-help/type/brain-tumour/about/brain-tumour-risks-and-causes

I am trying not to read too much at the moment before I have my consultation but a few things from the above article about 'causes' did make me laugh as I'm  trying to look on the bright side- So I noted it mentioned weight - well that's just charming!! BUT it says gliomas are not so much caused by this- well I guess that's alright then as I'm always on and off a diet (mainly off thanks to my obsession with baking cupcakes, sweet treats and 'bad things' consuming!)

Mobile phones- again no real hard evidence as such but those that know me know I love a good chat- I will literally talk you dry, until the cows come home and I'm always up for a long chat-a-thon. I just love to hear your news and goss! The only people that give me a run for my money are my wonderful Nanny Babs and my fabulous Auntie Kirsten! :) you know I'm right!

Another reason for me creating the blog is to perhaps cut down on some of my phone hours if in fact the above is true! 02 will rejoice in all their 'free' minutes I'm not burning (is this the bit where I'm meant to say that there are other network providers so that I'm not advertising?!)

I'm not sure how to begin with my hospital experience and initial diagnosis but it's part of my journey and we have to tackle that so I'll get on to that shortly.

Thank you for reading 

Xx Gem


Welcome

Welcome friends,

As promised (and discussed with some of you who recommended I do this- thanking you Mum, Auntie Kirsten and Jo) here is my blog all about my Bertie Tickle as he has become affectionately known.

As most of you know on Monday 5th August I was diagnosed with what they believe so far to be a low grade glioma brain tumour- I am still waiting for my consultation with my Neurosurgeon to confirm lots of things. We now know this will be next week. I will be updating here with the info on that as soon as I can.

I wanted to start a blog to a. document my experience as a young person going through this and b. so that potentially on my days where I am not so great or not up for speaking, you can come here and find out the latest.

There are sooo many of you to keep in touch with (I am truly blessed in many ways and I love you all) I felt this was just the best way to keep you all in the loop in a fun and informative sort of way. I have no idea where this blog will go but please join me on this journey.

...all aboard for The Extermination of Bertie Tickle!

With lots of love

Xx Gem