What If?

"What if..."

A constant question that goes around my mind about 1000 times a day. It sometimes lingers, it sometimes passes quickly but when it pops in it’s sometimes really hard to make it quieten down. The most frequent time it strikes is at night. The quietest of all the times when it seems my mind just wants to keep me awake all hours (particularly on a school night too, which is uber helpful!) 

If in doubt write it out on a pineapple sticky note right?

We saw my team again in early November and surgery is now planned for beginning of December. The risks were highlighted again with the main one being permanent mute (at the severe end of the scale) but lower down could be a speech impairment. That’s not something I can really properly comprehend at this stage and I think the sort of person I am means I want to cross that bridge only if/when we come to it. I was asked before to think about what I felt were acceptable deficits and unacceptable- honest answer, I don’t know, how can I know? The activist me, asked if there was a tick list or spreadsheet that I could merrily complete. It doesn’t exist. I thought of making one, but how can I possibly think of all the functions that are important to me, and what if I forgot some...this is where the implicit trust between my Surgeon and I comes into play. 

In the same breath it’s all so confusing, I want the surgery and feel so lucky I can still be offered surgery, however the risks this time around are much greater, but how does one weigh it all up? All I know in my heart is that I feel really there is no choice, if I choose not to go ahead the only likely outcomes are further progression/ change in tumour and/or the tumour will cause these issues anyways with my speech- it had to choose my most favourite bit didn’t it (I’m gonna say it) ARSEHOLE! 

That aside, physically I am well. I’ve had a few bugs etc but I think in terms of general health, right in this moment, physically I’m doing ok. I was potentially diagnosed with Trigeminal Neuralgia however my Neuro Oncologist believes it is “ice pick headaches”- yea they really are as ‘fun’ as they sound. A short sharp burst of strong pain in my head (I’m gonna say about a 7/10) freezes you to the spot and makes you want to shout “oucccchhh” and then within seconds it’s gone again. I sometimes get clusters of them all day, on the hour or half hour however then they can pass and I feel ok again for a few days or even weeks. They are unpredictable and I never know when they might strike. I generally have the attitude of “I’m gonna carry on anyways” but sometimes it feels a bit debilitating. They aren’t treatable as such because of the short nature so we’re just going to see how I go. Apparently it’s all quite typical of ‘this’ and surgery, so let’s see where the next part of this journey takes me. 

Sorry if this blog is a bit down in tone. I’m ok, just a bit occupied with all the non stop questions in my mind, but trying my utmost to just get on with it. 

Positive things to focus on:

• Family and friends- I love you all, you are all so important to me ❤️ every phone call, txt,  whatsapp, card, hugs etc- it means the world- thank you 
• Jamiroquai concert! My last concert pre surgery! I’m going to sing and dance like there is no tomorrow ❤️
• It’s CHRIISSSSSSSSSSSSSSSSSSSSSSSTTTTTTMAAAASSS, ok so not yet but it’s my most favourite time of year- bring on the films, being cozy and just general love and contentment ❤️ Being with all those I love is the most precious part to me ❤️
• Waking up every day ❤️ Having a chance to turn it all around no matter how crap the day before may have felt at times- I am forever grateful for this and as the legend that is Stephen Hawking said “where there is life, there is hope” ❤️ 

Just because xx

I’ll update here again when I know more. 

Love to all,

Gem Xx 

What Lies Ahead...and other reflections

So big massive summary time of where I am at with things. Today feels like a good day to update everyone for anyone that isn't sure.

Starting with I had a great birthday and really was spoilt. It's weird it all went so quickly but also slowly. I suppose I've only really got a few recollections of pre birthdays and post birthdays...the not so great being the coming home on my birthday after surgery and the great being not needing to worry too much about the little blighter and really going for it (insert party cannon here! ps still not had one of those just so you know!) This year I asked for minimal fuss but we still managed to fit in lots of lovely things and it really was at the right pace...body also decided 'I know what...let's chuck in a cold for good measure!' It's fine as we've still managed to have a great time, and also my theory is it wouldn't be a holiday/birthday/anniversary/celebration if someone wasn't ill ha! and I'd just been saying before now how lucky I have been in that I've felt so well and not had any bugs/viruses in the recent months, so I guess that's showed me not to get too complacent!

All the gorgeous birthday things- thank you guys xx

So just bringing it back a little. As I think I explained back in April is when we found out that BT is growing again and it's heading towards my SMA region. That's effectively where the brain helps out with all kinds of functions from movement to the formation and understanding of language. I had so much stuff planned for the Summer (some of which was cancelled- Jamiroquai :( but Jay Kay was having surgery so we'll let him off!) so my Surgeon agreed that I could take a 6 month break if you like and revisit again in August.

So that's what we did...we had a break, I saw my Surgeon again in August and it's been all systems go ever since. I've had every type of MRI/scan imaginable including a visit to The Macmillan Centre where I had a PET scan- this is essentially an MRI but where they inject you with a radioactive dye so that they can see inside my head in fascinating 3D colour! The dye had to come all the way from Cardiff so once we arrived we sort of sat for a bit and then approx 20 mins later in came the courier with the stuff. I asked if they have anything else that they bring it up with, but apparently it was just that! I couldn't believe it, but I think it has something to do with making up this particular type of stuff on the day and then taking it away to be used. I had to avoid children and pregnant ladies afterwards travelling back on the train but it was fine as it wasn't rush hour. You don't really feel ill afterwards as such I just felt a bit rubbish I think for the long scan etc- I'm not the best at laying still for hours on end, however I suppose you get used to it. I also took part in a voluntary extra scan which I believe is going to go forward with evidence for other brain tumour patients in conjunction with my hospital and Great Ormond Street to show the effectiveness for diagnosis in giving PET MRI  scans to all patients...so let's watch this space- I am always happy to help out and do my bit and what was an extra 15 minutes when I'd already been in for about an hour and a half!

So back to the now. I'm just waiting really. I've had a pre admission clinic, I've met my new Anaesthetist and now we are just awaiting one last appointment this week to discuss the results and then I guess it's away we go. I am nervous of course and anxious but the past weeks I have sort of mellowed a little which I think means I am ready for this now. The prolonged agony of the wait is sometimes worse than the actual thing I think so I guess I just need to get past this bit now. I am not sure if I explained before but I am meant to be having the whole procedure awake but this very thought alone has caused me a few nights of being awake so I think I still want to ask if we can do what we did last time the combination of asleep/awake/awake which essentially means when I am woken up I'll be in the main surgery and awake for closure and I've just sort of figured if I coped with that ok last time e.g that's my understanding of an awake surgery then I think surely this time around it should be fine. The brain itself doesn't feel pain, but the surround does so they can give you local anaesthetic for this however I do recall some pain and I suppose like any human, this is what we can fear most. I know I am in excellent hands and that they will do their utmost to protect me and ensure my comfort, it's just having a little bit of control over this makes me feel more content about it.

I don't know what the future holds for now but what I do know is that I need to try again, keep going and just take it all on again the best I can. It's a long recovery but I will update here and may even start a little vlog going again, who knows! I only got round to making the 1 video last time so I think a 'craniotomy- part 2' is due for all those who are interested!

Big thanks and love to all those who have been continually awesome- there's too many to name names but you know who you are xx

All my love,

Gem Xx

Quick edit...a huge thank you to all that sponsored and supported Carl for his Sky Dive on behalf of The Brain Tumour Charity! He did amazingly well on the day and we made some awesome memories! He said there is no experience quite like it :) He's been brave so now it's my turn! Eek! I'll leave his little certificate here...ever so proud! xx

Can't say thank you enough guys! xx

When There Is Rain, Look For The Rainbows

I haven’t wanted to write this one because in many senses writing it makes it all very real again, but I’ve thought about it a lot and I don’t think there will ever be a right time, and bear with me there is a rainbow at the end of this story!

So back in April I was minding my own business, having a super day with my Niece Lily and I got a call from an unknown number, no biggie I thought as it’s probably a call for PPI or some random rubbish like that. Unknown number left a voicemail and I thought that’s weird so I listened to the voicemail and this was my stomach dropping out of bottom moment, it was my Neurosurgeon’s Secretary…I was in the middle of softplay with my Niece Lily at this precise moment and I didn’t know what to do as I felt numb and a bit dizzy, thank goodness for all the soft surfaces! I called the Secretary back and she told me that my Surgeon wanted me in the next day. This was also a shock as I know that Surgeon’s generally aren’t going to call you in to talk about the weather so with a gut wrenching feeling I said yes.

The next 12 hours I don’t really remember. I was reeling and also probably quite snappy and short with everyone, I’m sorry, I was frightened and not because I didn’t know what to expect more but because I have had the absolute pleasure of living the last 3 or so years with not too many symptoms that have stopped me doing things and the thought of going back to the beginning and everything post-surgery has pretty much been on a loop somewhere in my mind since this day- not all day necessarily but one moment I can be ok and the next I’m not, it’s as simple as that. To people I have cancelled on or not spoken to recently, I’m sorry, hopefully some of the why will start to make sense.

So, the day of the appointment we went off to London. It’s always afternoon isn’t it for maximum stress factor lol! Mum and I went in and to begin with my Surgeon was very pleasant and talked how it was an 18-month post review, I had to remind him that it was almost 4 years in October as thankfully we have not needed to meet since then really as I am looked after by the Neuro Oncologist in his team, I think he was shocked in some ways as I have been living well during this time. In a super strange way, it was actually really nice to see my Surgeon. George is such a good man with a huge heart and he always makes me feel safe, which I guess is pretty crucial for a Surgeon. Anyways then the bigger news. In George’s opinion, the little blighter has been growing since around January 2015. This was a huge shock as apart from the ‘scanner error’ debacle that we had back then we have always been told it’s ‘stable changes’ e.g. the cavity if you like is adapting but not necessarily with tumour but just changing in shape slightly as you would expect the brain would as it’s a relatively flexible structure.

The next part was another difficult moment as in George’s opinion he believes that I need another surgery and asap. To clarify at this point the whole tumour has not regrown, its’s essentially a part at the back border which is extending into the SMA region (responsible in the large for movement) So effectively come May I should have been operated on. I was by this point quite emotional as it felt like in 24 hrs everything was up in the air again. I asked George if we could have a little more time purely because we had a lovely family holiday booked for May, Jamiroquai tickets that my sister Holly purchased for June and then a day at Reading Festival in August. George agreed that it was important to go to these things as post-surgery anything loud and crowded is essentially out of the question so he agreed to meet with me again in August and plan from there- it’s likely to be surgery in September, October or November, but currently I do not have a date. George was happy to wait within in a 6 month or so window but not over a year or 2 years as this runs the risk of further tumour progression and for now it is still appearing like a Grade 2. For anyone interested in the surgery side, last time I had what they call a maximal resection- so as much of the tumour taken away as safely possible whilst awake (approx. 95%). This time around George wants to attempt a supra total resection- effectively taking away what has regrown and a larger border whilst awake again. This is still not a cure but I am hoping with every fibre this will keep me well again for as long as possible and with every day hopefully we will reach a cure faster…I have to keep the hope going at this stage.

Some of you might be wondering about the discrepancy between my Surgeon and my Neuro Oncologist’s opinion- I guess what we have come to learn is this: the Neuro Oncologist is treating me from a symptomatic perspective of which bar headaches and other oddities they have been limited e.g. even with some slight change they are not concerned. My Surgeon on the other hand he is looking (even microscopically) at anything that can be operated on and always would rather remove anything as safely as possible, regardless of symptoms etc as currently for lower grade tumours surgery is still the main way to treat them. I hope that makes sense. I still feel a bit angry about the delay in being told certain details but equally I hold on to the sentiment of “ignorance is bliss” because it’s meant we have had a lot of time to just get on and enjoy our life and I never take that for granted because having met so many people within the brain tumour community, I know this is a luxury and I am beyond thankful for this time.

So as it would turn out Jamiroquai got cancelled due to Jay Kay needing surgery so I have had a few days where I have wondered shall I not just get on with it but the other part (and don’t laugh all my family and friends who know me well) I am trying to get the weight down again as I somehow let me foot off the gas and thought sod it, have emotionally ate my way through things again and this time I know I just have to do something pre surgery and after surgery as I need to make a change for life. Don’t get me wrong this is emotional even thinking about changing the habits of a lifetime because I am an emotional eater, BUT it’s very important to my overall health and also supporting immune system to ensure I am in the best possible physical shape to fight the little B! I also have one last special thing to do before surgery which is another holiday with Carl and somewhere we have always wanted to go, I’ll update on that nearer the time.

So that’s about it really. I don’t have any other tumour related news. I was having a super bad bought of headaches recently but thankfully these seemed to have passed, whether they will be back again I don’t know but I am relieved when they do ease up as they are akin to what they call “ice pick headaches” and therefore short in duration but intensely painful, there are not many ways to treat these either as you never know when they might strike. I am putting them down largely to the fact that we had an insane few weeks of humid hot weather and my brain doesn’t like going over about 25 degrees, especially in this country, a pool etc and I am sure I would be fine! Ha! Anyways as I write this I am staring out at grey skies and rain and a maximum temperature of 18 degrees, but you know what I think I am ok with that…sorry Summer lovers!

Regarding what I said earlier I hope this might make sense to some people that I haven’t told or if I have cancelled last minute or not done something as scheduled or the opposite if I have just turned up it’s because right in this very moment we’re back to living in a bubble again and that mainly consists of Carl and I and our family and of course good friends. I haven’t had the strength this time to call or write to all my friends individually so a bit like the reason for starting this blog in the first place, this is my way of telling you all and I hope you can understand that. Xx 

Ok so on to the rainbow part- my lovely Carl came home from work one evening and said, “I’m doing a Sky Dive for Brain Tumour Charity”- I have always known that Carl is an adrenalin junkie and Sky Dive was up there on his list of things to do but we didn’t even discuss it, he just went and arranged it and so there we are, all being well weather wise he will be jumping in September. We initially set a target of £500 but within 48 hours we had smashed that so we have upped it a little with the hope of raising as much as we can for this fantastic charity. For anyone who would like to go and sponsor him that would be amazing so I will leave the link here:https://www.justgiving.com/fundraising/carl-isaac

Thank you to everyone that has supported us so far and just generally supported us on what can be a right difficult journey sometimes. As ever I have hope in my heart and a smile on my face, I do have my moments and days but just trying to keep positive and focus on the good things.

Love to you all,

Gem xxx

The Grape and the Grain

I couldn't think of an appropriate title for this blog and then it just came to me and I am going with it...bear with me. I remembered that when we started out Bertie was apparently the size of a large grape space invader living in my brain.

So as most of you know surgery means they removed 95% (approx) of the tumour but the bit that makes it incurable is that it is intrinsic (made up of my brain) and being a mixed glioma- Oligoastrocytoma (is the official name) the blinking Astrocyte cells make this thing sod harder to treat, as he sits like a spiky thing in there with tendrils, hence he's impossible to get rid of completely, even with blasts of chemo or radiation as microscopic cells will always remain. This can be true for many other cancers too unfortunately. As for mine, he just happens to reside in that space, the brain, which makes him challenging to treat too in part because of the mighty blood brain barrier (BBB) to pass through and also because we're not quite living in those sci-fi times where I can be given a new brain...and could you imagine that! I don't think I want to either...

(Image courtesy of abta.org) 

Anyhows my latest scan showed that there has been some movement. The "bit that's left" in my Neuro Oncologist's words, has "bulked up a bit"...he's on the move but we won't know just how much until my next MRI scan in July/August time. Now this is why I thought well he's not so big that he justifies Grape status so we'll just call him the Grain currently! They are not so worried that they want to move me to 3 monthly MRI scans, they also need to allow 6 months to fully check how much growth (fingers crossed for none or minimal) that there has been. At my next MRI scan I will also have an extra fancy profusion scan (this looks for blood uptake to the tumour site) to see how the residual tumour is responding. If the blood uptake is high then that's not so great as it potentially means he's going to grow back quicker, if it's slow uptake then that's good because it means he's still only slowly, lazily, plodding along! I keep thinking of this tumour like that bit in Home Alone...

If he is really serious about coming back I'll just have to step up the regime again and go from there. I'm currently trying a modified Atkins diet (high good fats and low carbs) as it has shown some positive impacts for people with brain tumours and in the treatment of epilepsy too. I felt a little sluggish to begin with as your body goes from living on those carbs (sugars) to converting your body's fat stores (of which I have plenty!) into energy. I am doing this in conjunction with as many visits to the gym as I can manage and/or walks with the hubs. Don't get me wrong, I am human, I have had some real highs and lows with this food thing, but this time I just feel it's got to be done. We've basically realised that no matter what diet I adopt the IBS never ends so I just throw caution to the wind and as the book says "feel the fear and do it anyway!" I am also still on the Care Oncology Clinic protocol with the next review scheduled for after I have been back for my next MRI scan.

Some people (not close friends/family etc may I add) have asked me recently if I knew that he would return, the answer to this is yes, and I don't expect others who do not know me well to understand this as pre diagnosis I wouldn't have necessarily understood that part, but basically the "it's incurable" bit of the diagnosis means that's what we can currently anticipate to happen. But all the science in the world cannot tell you who, what, why, where and when (at the moment...) because we are all so different, and because our bodies are so different and because our tumour types are so different. I only currently know the information about my tumour and prognosis but as I've said before, and as I'll say again, the statistics are just that and nobody really knows what will happen. It's a bit of a frustrating waiting game at times, but you just gotta live each day as it comes, enjoy things to the max and make the most of what you have got.

I know currently I have a good overall quality of life, albeit tinged with shitty parts from time to time but in the main, in the here and now I have so much to look forward to and to live for, that keeps me motivated most of the time. Where my tumour sits he's right in the "thinking, comprehension and emotions" epicentre and that means sometimes we just don't know if what I am experiencing is "tumour stuff" or just plain life and life's feelings. I have had some really good days, good days and then at the other end of the spectrum bad days and sadness. I remember when I was seen after the craniotomy that they said there will be no middle anymore, that life would be filled with "epic highs and massive lows" I wish I did know at times why but as I say the fighter side of me knows that there is no point in wasting the time you have got worrying about those things because 9 times out of 10 the questions are still unanswered and not necessary to worry about in the here and now because whilst we worry we're missing the good stuff and the bits that make life wonderful (must remember to read this again on the tougher days!)

I hope in the years to come we will have all the answers! Another reason why events such as Brain Tumour Charity's https://www.thebraintumourcharity.org "Bandanas for Brain Tumours" day is such an important day for me. Every fibre in my body truly wishes that one day these blasted things will be something of the past, or we will have invented better treatments, which downgrade some of the severe symptoms and problems that people with brain tumours face.

I know some of my expressions above might seem bonkers, but for me living in this brain tumour world, that's how I like to make sense of it all and it also takes the edge off. I know deep down how serious all of this is but I am determined to make light of the bad stuff and still try and aim for a happy and positive outlook. Compared to some of my friends on this journey who are going through utter hell right now, I know that this news is still on that better end of the spectrum, difficult news nonetheless, but we keep, keeping on!

All the love,

Gem Xx