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. 

MRI tomorrow

Hello everyone,

I'm off to London tomorrow for another MRI of my brain- it's a fancy brain mapping type thingamajig- don't ask me what it does but all I know is its wonderfully clever. 

This will show up the parts of the brain I use for various activities such as speech, cognitive,movement etc and this will help my super clever neurosurgeon avoid these bits during my op.

I will confirm more tomorrow about my op as I'm pretty tired now. I should be asleep but wanted to update you all! 

I met up with some very inspirational people today from a local brain tumour support group ran by the lovely Louise (hi guys if you're reading this!) we had a lovely lunch whilst we chatted about our conditions, how we feel, how we cope and with (and most importantly might I add) shed loads of LAUGHTER! Because it is the best medicine as we know!! 

I know I have only just discovered this group but I would like to say a massive thank you to Louise who has been such a great support to me, has chatted with me for hours and presented me today with a great 'Hello Kitty' folder of gems to use throughout my journey. Xx 

I'm back with Mum now and to say "I don't travel light" is an understatement! I didn't know what to pack so I brought the lot! 

Until tomorrow,

Gem xx