POST 6: LET’S FACE UP TO IT…

So… it all went to plan and my recovery has been fabulous!!! Yippeeeeee!!!

I have already posted on the Facebook group page about this amazing new equipment, but for those who don’t follow the Inside My Head Facebook group….this may be a fascinating read!

MoS2 Template Master

http://www.dailymail.co.uk/health/article-3015974/World-surgeons-spot-brain-tumour-bleeping-pen-Laser-helps-surgeons-tell-difference-healthy-cancerous-tissue.html?ito=social-twitter_mailonline

This probe trial at Imperial is partially funded by Brain Tumour Research Campaign, so it certainly excites me to think with the money we are raising/can raise together, what may come next!

The doctors were really happy with the resection and how my operation went and are more than happy with my speedy recovery! I am hoping that this is a sign of things to come and that my body is more than ready for the fight ahead!

Being completely honest, which I always will be when writing this blog….I am more nervous about this next stage; radiotherapy and chemotherapy! I know, unfortunately SO many people have to go through this kind of treatment, but I have been fortunate enough so far, that other than my seizures and recovering from my 2 operations, I have not really “felt ill” or “looked ill”, yes I have been tired every now again and I have listened to my body telling me this and it has faded reasonably quickly. However, I have been warned that the treatment will more than likely change this, although everyone is an individual, and will therefore react differently. I have been told that the radiotherapy will cause hair loss and tiredness, and the oral chemotherapy tablets may cause sickness. The treatment will be 6 and a half weeks long, Mon-Fri down in London.

As you can probably tell from my photos, my hair is important to me…..I have LOTS of it!! Even hairwhen I first found out about my prognosis and the shock of finding out it was terminal…..to me the hair loss was one of my main worries! I know this is prettyc4aae332c8b0395bac010cfb4dafcefa shallow in the grand scheme of things, and really should not be at the forefront of my mind…..but as I said, I am a very honest person and the thought of being bald most certainly was right there at the front waving at me! One of the BEST things to have happened to me since writing this blog has been getting to know people who are unfortunately on a similar journey to myself. It is at this point therefore that I simply HAVE to give a special mention to my beautiful, new friend, Charlotte. We are the same age, and have the same prognosis. Charlotte has had her treatment and my lord, she has given me a whole new outlook on losing my hair! To say she rocks a wig is a complete understatement! She looks HOT!!!! Even just receiving a message of support from Charlotte 3Charlotte and seeing her photos has made me so much more positive about this next stage for me; and for that, Charlotte, I thank you!!! Getting to know others, just like Charlotte, and the very many other amazingly Charlotte blondekind and strong people who have reached out to me since I started sharing my journey, has given me even MORE determination to make a difference!

I have decided I am going to take each radiotherapy session, each day, each week, as it comes. I do not want to rush in and shave all my hair off irrationally. If I lose a lot and having naturally thick hair means that my wig won’t sit as well unless I do shave it all off; then so be it! It’s another test of character for me and I can have the fun of experimenting with different colours/styles that I would never have had the balls to do normally!!! On the plus side for me, my sister is a pretty amazing hairdresser, so I am sure she will sort me out a treat! (Thanks sis!!! 😛 )

As for chemotherapy, I have been told that I may feel sick. I think I am in the frame of mind of preparing myself for the worst, whilst hoping for the best! Potentially for these 6.5 weeks I could be absolutely wiped out, shattered, sick, not want to see or even have the energy to see anyone/do anything. Or I could be okay during the beginning until the levels get higher towards the end of the treatment; or the fighting spirit in me so far may not find it as difficult as they are warning…..nobody knows until they do it!

Looking at it from a logistical angle, it is an emotional time. My treatment is in London; the majority of my family live in County Durham. I will miss them ALL an incredible amount and I am struggling to get my head around the fact that I won’t have my niece, Amber and her ridiculous one liners to keep Me and Amberme smiling day after day 😛 (get your snapchats at the ready, Amb!)! I am very fortunate in the fact that, everyone wants what is best for me and completely respects my decision, I feel a strong connection with the team at Charing Cross and their innovation and passion inspires me and I do not want to be out of their bubble of positivity, as I still truly believe my frame of mind, added to their passion, is helping me fight Trev! In the grand scheme of things, 6.5 weeks is not that long and I know I will have plenty of visitors. Also on my side is the fact that we have a family base in Hertfordshire; plan being, that this becomes my home for this period of time and, dependant on health, we get the train or we travel by car each day into London. I have the weekends available; so putting my ‘positive head’ on, I am hoping at least at the beginning, I can hop on a train back up to the North East. For once, having my family spread all over the country is a huge benefit!!! I will also be closer to my work colleagues in Portsmouth and will hopefully be able to use it as a time to reunite with those amazing ladies, again, health permitting.

GWQ Girls

I am trying my hardest not to predict the future at the moment, as there is too much uncertainty surrounding how I will feel, what I will want to do etc. so I need to take each day as it comes and go from there.

I am currently awaiting an appointment from the oncology team at Charing Cross to go and have my mask fitted ready to start my radiotherapy treatment.

If you are like me and had no clue what this meant, please view the Cancer Research UK information video below:

I have been told that the mask takes about 2-3 weeks to be made. I have just sat here and watched the video above with my mum….her first comment; “Wow, well there will be a big bit sticking up in the mask for your nose!!”, DELIGHTFUL MOTHER!!! 😛.  So my short term plan…make sure I am listening to my body and resting up when I need to, as my body will still be recovering from surgery, but most importantly, make the most of the next few weeks while I am feeling reasonably fine and dandy!

POST 5: THE LUCK OF THE IRISH…

What a week it has been!

Let’s approach this is a chronological manner, and I will try and fill you in on as much as possible…!

 

So on Sunday 15th March, I was lucky enough to be invited by Caterpillar (proud sponsors of Leicester Tigers) to watch the LV semi final match at Welford Road against Exeter, within the luxury of corporate hospitality! I felt very very very spoilt and loved every second of it (despite the result!). I took my gorgeous Mother along; it was Mother’s Day after all! (Sorry Dad :P). The week leading up to this game, one of my all time favourite Tigers, England and Lions player, Lewis Moody, had been kind enough to take the time to tweet me and retweet the link to my blog. It just so happened that he was one of the presenters of the SKY Sports TV coverage for this match. After he had finished his duties, I went over to thank him in person for his support on Twitter. What a lovely guy! He asked all about my journey and gave me a big hug and wished me luck for the op on the following Tuesday! Even more exciting….he is keen to get involved in some fundraising events with me in the future….TIGERS LEGEND! He kindly sported a BTRC charity wristband too!

me and lewis moody

 

So it was then, from Leicester to London! Getting ever nearer……

Monday Morning, we headed to Charing Cross hospital. As I have “difficult veins”, they wanted to ensure they could get a line in. Come the afternoon, I was scheduled to return to Hammersmith Hospital to have another go at taking part in their research trial scan. Due to my veins behaving themselves this time around, I was delighted to be able to take part in this scan. These research trials, can only happen, and therefore things can only be learnt and developed if people volunteer. I will provide all the links to the detail of this particular trial, so if relevant, please do take a moment to consider taking part.

http://www.cancerresearchuk.org/about-cancer/trials/a-study-looking-at-pet-ct-scan-magnetic-resonance-spectroscopy-mrs-brain-tumours

The research team there were SO lovely, empathetic and genuinely grateful that I took the time to take part! To me, it is not even questionable….anything I can do to help with new methods, I will! If I am being totally honest, unlike MRI scans, this scan was almost completely silent – I used the 45 minutes in the scanning machine to have a nice nap and chill out away from the nervous thoughts of what was happening the next day! To top it all off….I was given Oreo biscuits when it was all finished! (cushtyyyy!!)

Then it all began to sink in….back to Charing Cross we went! However, as my bed still wasn’t ready. I saw this as an opportunity to escape and eat! (I had been ‘nil by mouth’ for the day because of the trial scan). Conveniently, there is a Pizza Express across the road from Charing Cross hospital….using my puppy dog eyes, I managed to persuade the parentals that this was perfect timing to go and eat dinner (“the last supper” as I was inappropriately calling it!!!). Chicken pizza it was! I must have looked like a right numpty! 2 canulars in, sticky tracing pads for the op stuck all over my head and scalp….GIVE ME FOOD!!! It was a pizza expressdelightful dinner, and it was very nice to escape from the hospital for half an hour or so. And on our return, my bed was ready! 11 South, K Bay, bed 4. My stomach started to sink a little bit….I knew the time was nearing for my parents to leave so they were ready for the long day tomorrow. It had been suggested several times that I would either be first or second on the list for my operation, so it would be an early start. All my comfy clothes unpacked, that time did come, and emotion hit me quite hard. ONE MORE SLEEP!!!! I said goodnight to them both and got settled in my bed (after playing with the remote for quite a while – hospital perks!) I was so fortunate that K Bay was filled with 2 absolute lovely ladies opposite my bed, who certainly helped take my mind off the nerves that evening. Nikki and Jade, a special thank you to you both. I hope you are continuing to recover well!! Although a late arrival to our bay made me struggle to get to sleep early, all things considered, I did sleep quite well, when I managed to put my phone down and stop reading everyone’s wonderful messages of support!

 

Tuesday 17th March,  I was woken at about 6am! IT’S OPERATION DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Holy mac n’ cheese!

op day!!!

I was given my meds and a sexy lil gown and seductive knee high socks. I made my way to the bathroom and the transformation was complete! (*insert sexy hospital selfies*)

pre op

hospital socks

I was told to expect to be seen by one of the anaesthetists soon and that I should expect to be taken to theatre about 8.30/9ish as I was numero uno on the theatre list!

Fortunately my parents arrived about 7.30 ish and were allowed by my bedside (calming my nerves???/I reckon more nervous than me!!!!). 8.30am arrived, and the hard part began…the saying goodbye (although I knew it was not a “goodbye” – it was still awful) I could feel the tears brewing and I could see my parents getting upset too! Nikki and Jade wished me all the best and I tried all the deep breathing techniques I have ever heard of to try and stop myself from becoming a hysterical mess! I kept blowing kisses to my mum and dad and telling them I love them through the glass window. I have never felt so guilty as I did at that moment in time. I knew how helpless they would feel – it was alright for me! – I was heading off for a cushty 4 hour sleep! They would have 6 hours or so of desperate worrying, overthinking and fear.

Theatre number 7! That was my destination. Although I am not a particularly superstitious person….and apart from my date of birth, I have never really had a lucky number….all of a sudden I remember thinking to myself: lucky number 7!!!!!

I was taken into the anaesthetic room within the theatre awaiting the arrival of the second anaesthetist to put me to sleep. This felt like the longest wait EVER! I was lying there, without my glasses on (so blind as a BAT) but could kind of see movement in the theatre ahead through the glass windows in the door. The huge significance of what was about to happen all of a sudden hit me! I started crying my eyes out and if I am honest, I felt like a real idiot! I even found myself apologising to the anaesthetist who was trying to get everything ready as I did not want to be that person! I asked for a tissue and had a word with myself! “Trust your gut, Anna! Everything is going to be fine!!!” The second anaesthetist then arrived and he very quickly said, right, time to get you off to sleep! The last thing I remember was this guy telling me a story about how the tissue I had clenched in my hand from blowing my nose and wiping away my tears would fall out of my hand and that he knew lots of old ladies who always used to have tissues clenched in their hands….I think this happened at least!

That’s me done…..over to my surgical team!

The next thing I remember was feeling very sick when I was coming around….I think I was still in the theatre at this point and was advised to try and hold it down if I could. I then remember being in recovery. Constant observations being taken to ensure I was okay after surgery. What’s my name, What’s my DOB, Where am I? What date is it? Etc. A young guy who was looking after me in recovery was an absolute babe – and I have a serious feeling I absolutely chatted his ear off! I remember asking several times what his name was, because he was so nice and I wanted to make sure his amazing care was acknowledged; he was only learning the ropes on recovery as well! Unfortunately, despite my many attempts…..I cannot remember his name for the life of me! If by any remarkable chance it was you, I thank you so much! You made me feel so comfortable, reassured, calm and like you were my mate! Kevin also popped in to see how I was getting on, he asked me how I felt; I said ROUGH!; He said it would feel like I have a horrific hangover!; I remember saying to him, “What?! That is not fair though….I have had no fun!” I would happily take a horrific hangover if the party has been a top one! I was so worried that my parents would think I was still in theatre as well, and not just chilling in recovery, so I called in a favour! I asked Kevin if he would let my parents know I was okay….not like he is a busy neuro surgeon or anything, is it Anna!?! He said of course, and asked where he would find them; I had no clue and then went on to recite my dad’s mobile number! Kev being the legend he is, of course rang and filled them in! It was nice to know that they would be relieved to hear that I was okay!

Me being my witty self as well :/, I was getting quite bored of the nurses constatntly asking me the orientation questions detailed above, so I decided to mix things up a little bit! When asked what date it was, I decided to respond, saying “Its St. Patrick’s Day, that’s why I am still alive and the operation went so well; I had the luck of the Irish!!!”. They looked at me as if to say “WTF?!” I then felt the need to explain that I was just as weird before the op!!!

To add even more hilarity to this situation….I will fill you in on a little secret: I genuinely had a little Irish leprechaun in my handbag to give me good luck. Anna Doherty I blame you!!! My best friend/twin Anna had visited Dublin a few weeks beforehand and bought me home a little souvenir! As soon as I saw it, I swore I would take him with me into hospital. He bloody worked!!!

Unfortunately, it took a few hours to be moved from recovery back up to the ward, but I can remember seeing my parents and saying I am fine and I cannot even begin to think about tricking you that anything is wrong with me post op….I LOVE YOU!!! Seeing their faces again was so amazing! I was on the same ward, just a post op bay, where you get more regular observations etc. It was all done! I survived! And by the looks of things so far, no problems! My parents said that Kevin had told them he could not have wished for the operation to have gone as well as it did! Roughly 3cm X 4cm of Trev has done one! WOOOOOOOOP! TAKE THAT TREV!!!

hospital bed

I had a card left on my bed side – Nikki one of the lovely ladies I left on K bay that morning, had been discharged and had left me a lovely, thoughtful note wishing me a speedy recovery! The tears started again, and then all of the overwhelming feelings of joy, luck etc. came over me! And I felt so normal! It was bizarre! I just had major brain surgery and yet, i felt, all things considered, fine! I remember my mouth and lips were soooo dry and throat was sore, from having tubes in during the operation. I was desperately searching for my Vaseline pot!!!!

I had to have observations every 30mins for the next 6 hours, so although very very tired, my sleep unfortunately had to keep being disturbed. Wednesday was the worst day to date. I never knew it was possible to feel so ill as I did! I had nausea from the moment i woke up and unfortunately was violently sick post opthe majority of the day. I felt so weak, my head (no surprise) was banging, but being sick had put even more strain on my headache. I had a fever in the night, my chest was tight, and I was seen by a doctor. She decided to run some xrays on my chest and abdomen, to rule out any infection/collapsed lung. Fortunately, my fever calmed down and no problems were highlighted through these XRays.

I was so blessed, my best friend, Anna, and one of my best friends from university, Livvymy baeOlivia (an air hostess now living in Abu Dhabi, conveniently had a rescheduled flight landing in London on Thursday Morning) and two of my cousins, Ian and Holly were able to come and visit me in hospital – so this certainly brightened up my days!!!

Once I had got through Wednesday, everything else seemed like a walk in the park! I was seen by the physio on Thursday, and I was able to get out of bed, get the drain out of my head wound, catheter out, I COULD WALK!!! Hallelujah!! This was a massive step forward for me (no pun intended)…being able to sit up and get out of bed made me feel so much better. Lying flat in bed all the time, had made my chest feel really tight and breathing was becoming slightly difficult. It was also not helping the swelling on my face or on my right eye. The more I am upright, the quicker this will fade.

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I took about half an hour sat there on my bed observing everyone else on my ward. I actually got quite emotional, one lady was severely struggling with her speech and could not tell the nurses what she wanted etc. She was having to point to letters on a laminated card to spell out what she was trying to say. I sat there feeling so (I know I say this all the time), but genuinely BLESSED! I could not imagine losing the ability to talk and express myself; what a brave lady. I wish her all the best and hope that it may have only been a short term side effect of her operation.

However “well” I was feeling, I knew how important it was to get my rest. I was sleeping the majority of the days away and always felt better after this invaluable rest. The doctors came around again on Friday morning and asked if I felt ready to go home. I just wanted to ensure that I had another day of no sickness. (I could not imagine feeling how I did on Wednesday and not being in hospital). I was visited by the physios again and tackled a flight of stairs – felt like I was bossing this recovery malarkey! Friday evening, albeit quite late on (about 10ish) I was discharged!!!!!

This part of my brain tumour journey was over!

I have an outpatients appointment booked for Thursday 26th March in the morning, to find out exactly how the operation went, what they have found out (histology report). I will also hear about what they plan to do to Trev next! Boom, let’s keep going!!!

I thought it was a bit stupid travelling all the way back up to County Durham to come back down again on Wednesday night, ready for Thursday morning. So although desperately missing my mad clan back up in the North East, I am chilling out in Hertfordshire this week and by chilling, I mean constantly napping!

So I am getting a few funny looks off people…fortunately, not much of my hair has been shaved off at all staples(Kevin was true to his word) but I do have a lot of staples in my head, my face is slightly swollen still and I wake up with a bruised eye. But do you know what….I could nobruised eyet care LESS! I am so lucky to have been able to have this operation in the first place, for it to have gone so smoothly, and to have the unconditional support of all my loved ones.

As I was getting slightly more with it, I ventured back on to the Inside My Head Facebook page…..this made me feel even more blessed than I felt post op! The amount of messages I had received over those few days- WOW! I can only apologise that I obviously will not be able to reply to everything all you wonderful people have sent! That Facebook page has now got waaayyy over 2k likes! Furthermore, my JustGiving page target of £1000 had been smashed….I have decided to up this target to £5000 now, I hope I am not being to unrealistic, and I see this as a more long term goal. I cannot thank all of you enough who have already been beyond kind and donated to BTRC! IF you haven’t already….let’s put it this way…It’s amazing to actually type this out, but nearly 30k people have taken time out of their days to read my blog now (WOW WOW WOW), if one sixth of you donated just £1, thats £5000 raised, right there, and that is a hell of a lot of research that can be funded to save lives, just like mine!

POST 4: AHHH HE IS ACTUALLY GOING INSIDE MY HEAD….

As many of you may know if you have read my posts below….I am scheduled to have my brain surgery (partial resection) on Tuesday! Today is Friday….that leaves me with FOUR days until op day (*dramatic music*)

I wanted to post today just to try and get some of my nervous thoughts and energy out of my system and to try and give an insight into some of the worries that are going through my head. I want to use it to vent some of the uncertainty that is all built up inside of me, so then for the next few days I can put all those worries into a little box, pack it away and try to keep myself as busy as possible until Monday when I will be admitted to Charing Cross.

I am very much aware, particularly with the help from the lovely ladies at the Maggie’s Centre at the Freemans Hospital, Newcastle, that there is no point worrying about things that are completely out of my control, as it all just spirals out of control! If you have not come across the work of the Maggie’s Centre before, they are INCREDIBLE!

Built in the grounds of NHS cancer hospitals, Maggie’s Centres are places with professional staff on hand to offer the support people need and there are now 17 centres across the UK. I have now been to a few Brain Tumour specific support groups at the Freemans hospital Centre, and just popped in to relax and have a chat in between hospital appointments at the Centre at Charing Cross. The session I attended last month at the Maggie’s Centre has been able to help me a lot this past week….we spoke about how to deal with uncertainty, of which there has been, and still is A LOT of in my life at the moment. This session was invaluable to me, particularly as I am a complete and utter control freak and I hate not knowing exactly what is going on. Although having had discussions with my “super surgeon”, Kevin O’Neill, I still don’t really exactly know what is going to happen, how much pain I will be in afterwards, how big my scar will be, how much hair they will have to shave off, if there will be any major side effects….the list goes on.

The lovely ladies at the Freeman’s Maggie’s Centre explained how sometimes questioning each and every one of these worries and uncertainties can be detrimental to my positive outlook, because the likelihood is, that I don’t have the answers and these things are completely out of my control. Thereforee9dfb595a8289e373c0c7fb169eeb036 what it is better and more beneficial to concentrate on, is the things, albeit how small, that I can control. Writing my blog and using this as a means to release my thoughts is in my control, remaining as positive and upbeat as possible is in my control, and making a difference is in my control (with your support of course)….and that is the path I have chosen to follow!

Right, so control freak Anna – let’s use this post to vent my worries:

I think my main worry, that may seem silly to some of you who have had operations under general anaesthetic before, is the thought of not waking up! I have never had general anaesthetic before – my first biopsy operation was awake surgery; I was lightly sedated and had local anaesthetic injected into my scalp. The control freak that I am, I was weirdly quite thankful for being awake, as I knew exactly what was going on, even if I did have to endure the ridiculous noise of the drill :/!! Although the prospect of being awake during brain surgery seemed to freak everyone else out, I am in fact more nervous about being asleep this time around. The operation is due to take about 3-4 hours I have been told and I have been told to expect to be kept in a further 3-4 days to recover.

There are obviously risks, as with any major surgery, which again, if I dwell on would probably drive me insane and lead me to call off the operation all together! The main risk I have been warned of is that I may lose movement or feeling in the left hand side of my body. Currently, this doesn’t worry  me too much – to me, this is a small price to pay to potentially be able to live and spend a few more months/a year/years with the incredible people in my life. It would obviously affect my day to day life for the time I do have left, but I am almost positive this won’t be the case…always trust your gut instincts – see I do listen to you, Mother!

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I do, bizarrely, feel very lucky to be in the position I am in, in terms of finding Kevin, and him being keen and confident to operate and partially resect a sizeable chunk of the Trev. Taking this into account, I am quite excited to undergo the surgery and see what kind of a difference, if any, it can make to my progress, future treatment results (i.e radiotherapy), and my prognosis . I am hoping to up the ante on the score card front and it look more like Anna 2 – Trev 0.

Taking all of that out of the picture, and just being completely emotional….I AM SO NERVOUS!! I think it is only hitting me at certain times, on certain days, what on earth has gone on, is going on and what will be happening next week! It really is crazy! I am a bit worried as I haven’t had a breakdown over the past week and a half. Comments and messages I have received off the back of my blog etc have made me shed tears, but mainly because I cannot get over the kindness of my family, friends, blasts from the past, or complete strangers! But an absolute sob, I haven’t had. Although, as I am sure you have got the gist of by now, I am a very positive and strong person, I also believe it is important to be weak at times and have a good cry….although it helps with nothing, changes nothing, everyone needs to have an emotional release to keep you sane! I wonder if one is due to arrive before Tuesday…?!

When I was coming around from my biopsy operation at the beginning of February, I could not control the tears. I was lying in my hospital bed, with either my Mum or Dad in the seat beside me so I could grasp on to their hand (they took shifts so their hand didn’t end up falling off! ). I would be lying there, head throbbing from the surgery, but perfectly quiet and calm, eyes shut, and the next minute, tears would be streaming down my face! And this would then have a domino effect on the parent in the chair! The people on my ward must have thought we were absolute nutters! The emotion just crept up on me each time and came from absolutely nowhere. At least this time I am prepared for the tears to turn up without warning!

Speaking of my parents, I am fortunate, particularly with my surgery being in London, that they are both 7c30dc9a4a71e4c3b3c33bbcb05450e3going to be able to be with me the whole of next week. I hate, more than anything, trying to imagine myself in their shoes, particularly when I am wheeled away on my bed and during the 3-4 hours when I am in surgery. The worry they must and will experience is horrible to think of. Furthermore, with my surgery being in London, the remainder of my family will not be able to visit me in hospital due to us all living up in the North East. Again, I don’t like thinking about what they will be going through and how helpless they will feel being so far away. Although I know these scenarios are not my fault and are completely out of my control, I almost feel like I am inflicting these horrible feelings on to the ones I love the most and a feeling of guilt creeps up on me when I think about it too much

On a lighter note, if anyone has any suggestions for how I can wind up my loved ones when I do come out of surgery fine, I would appreciate any ideas on a postcard!…. I was thinking of, as I heard it has happened…to pretend that I can only speak a foreign language (leaning towards mandarin as they would have no clue if what I was saying is right anyway – and I was learning mandarin at work before my diagnosis!).

If I have to think of the worst scenario, and if anything is to go completely wrong (again, I know it won’t – gut feelings are the best), I just hope that I am still in a position, health wise, to be able to keep raising awareness and money for brain tumours and BTRC. If I am not, PLEASE continue to help this cause so that in the future, nobody has to even contemplate processing these types of thoughts that are going through my head right now.

Thank you for lending me your ears today, and I will be sure to make my sister, Victoria, (would hate to see my parents have a go at uploading anything on here) updates you all when I have come around from my operation.

me and sis

I have a general Just Giving Page now, so for those who feel so inclined….Even if it just a £ 1 donation, I will be so grateful!!!!

DONATE HERE

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POST 3: EXCITING UPDATES!

So folks, news just in…..well several pieces of news in fact:

  • My operation is scheduled for Tuesday 17th March. I will be admitted in to Charing Cross hospital on Monday 16th March, following on from my scans this coming Monday (9th March). So best offers being taken for my Usher tickets that got delivered today! (*SOBS*)!

OH MY GOODNESS! It’s all feeling real now! I wanted to let you all know as soon as possible, but I am planning on writing a more detailed blog post in the lead up to the operation, at some point next week.

  • Had some fab news yesterday also, my Facebook page for Inside my head, reached over 1000 likes in under one week – INCREDIBLE!  If you are not already following my journey on there also, please do.

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  • So my amazing friend Toni McLeod is doing a sky dive in aid of my chosen charity Brain Tumour Research Campaign. What a BABE!!!!

She has set herself the target of raising £800, but I think you amazing people can help us smash that target and smash Trev right in the face ! Please give as much or as little as you possibly can…..now it’s time to start making a REAL difference – let’s beat brain cancer!!!!!!!IMG-20150307-WA0019

Here’s her Just Giving page where you can donate.

The ball will take place on Saturday, May 2nd at Wynyard Hall, Stockton on Tees, TS22 5NF. With the help of my family’s company, Lox of Love Ltd, we are organising Cinderella’s Charity Ball at Wynyard Hall to raise funds for the Brain Tumour Research Campaign. This is a charity (as you may have already read) headed up by my fantastic neuro consultant, Kevin O’Neill, who, along with his dedicated team of neuro specialists, is doing all he can to give me the best prognosis possible. All funds raised will go to raising awareness of brain cancer (often called the Cinderella Cancer for being overlooked and under-researched) and in researching brain tumours in the hope of improving outcomes for all.

Our Cinderella Ball is a black tie event, including a 3 course meal, reception drinks, an auction, raffle, entertainment, dancing and more and we look forward to seeing you all there.

Tickets are priced at £45.00 (+ booking fee) and can be purchased here: http://www.eventbrite.co.uk/e/cinderellas-charity-ball-tickets-16046388179?aff=affiliate1

10 people per table on the evening – If you would like to book a full table of 10 please contact us directly, ideally through Facebook – link to the event is here. Any further questions, do not hesitate to ask!

Apologies for bombarding you with information…..but I ask you to help me out with everything we have going on! Without your support, I cannot achieve my goal of making a difference.

Minions

Thank you as ever!

All my love, Anna xxx

POST 2: The Journey Starts Here…

I need to start my second post by saying the biggest thank you I have ever said in my life! The support I have received since my blog went live on Sunday has been well and truly overwhelming! I could not be more positive about my situation or more determined to make a difference than I am right now, and that is all down to each and every one of you who has taken time out of your busy lives (I know you aren’t all bums like me and don’t have to go to work! :p) to read and share my blog, and to message me directly or on my Facebook or Twitter pages with your lovely words of support and encouragement. Let’s keep it up and raise as much awareness as possible!

Since Sunday, a lot has happened and I am very excited to share all my news with you all!

As mentioned in my first post, I was told that due to the intrinsic nature of my Grade 3 Anaplastic Astrocytoma, my brain tumour was inoperable. Due to the horrific and incomprehensible time scale I was given on receiving my biopsy results, I was fortunate enough to be able to seek a second opinion, on recommendation from a family friend, from Mr Kevin O’Neill, Consultant neurosurgeon at Charing Cross hospital, part of the Imperial College Healthcare NHS Trust.

All I can say is, WOW! And how can I sign up to the Kevin O’Neill fan club?! Within the space of a one hour meeting, chatting with Kevin about my journey to date and telling him about me (surprised the meeting didn’t last hours and hours, as I am very good at talking about myself!!), he managed to completely flip reverse my outlook on my prognosis. He did not change or disagree necessarily with anything I had already been told, but as a pioneer in Brain Tumour Research, he simply exuded such passion in this field, and on a more personal level, an apparent passion to want to help me; as an individual.  At only 23 years old, Kevin was adamant that everything should be thrown at me; a young and healthy person is obviously a better receptor of treatments etc. than elderly patients. What was the biggest breakthrough in this meeting for me, was when Kevin said he would be keen to operate!

42ec91f0107f2ec86813b1657cb07706My tumour can never be fully removed, but Kevin is keen to carry out a procedure called partial reception.  Part of my tumour covers both sides of my brain, which means operating on that particular area would have far too high a risk. The majority however is on the front, right side of my brain, and is much more accessible.

Although operating, partial resection, debulking (I have heard many names for the procedure) won’t make a difference to the ultimate outcome, after consideration, it certainly seems worth it to me! Debulking this part of my tumour will mean that whatever is left in my head will have more room to grow in the future, and therefore I hope I will be at less risk of seizures.  There is a small chance I may lose some movement on my left hand side of my body – but that, to me, is nothing.  The part of Trev (yes that’s right, I really did name my tumour!) that is taken out, can then be sent to Kevin’s research team to grow and test on, trying differing treatments on it to see what it reacts well/badly too.  Several other alternative treatments were also mentioned, alongside the more generic Chemo and Radio therapy treatments.

I came out of that meeting delighted and Kevin gave me a hug and high five, saying your fight starts here! Even if my prognosis has not changed, knowing someone is on your side and ready to fight with you; and furthermore, knowing that the person who will be conducting your brain operation and leading your treatment plan, is actually incredible. Team Kevin all the way!

I was in London again on Monday of this week. I had more MRI scans, and met with Kevin again. My perfusion study MRI was not successful on Monday and the images were not satisfactory, I was therefore invited back to have this scan conducted again next Monday as part of a research trial, at Hammersmith Hospital; also part of the Imperial College Healthcare. I then expressed to Kevin that, although coping very well with it all and remaining extremely positive, the frustration of not knowing when everything was going to be happening was driving me insane. For my whole life, not just since my brain tumour diagnosis, I was, am and always will be, a control freak; and a massive one at that. I hate not knowing my plans, timings and arrangements for anything and everything! Not knowing roughly when my partial resection would be taking place meant I couldn’t make plans and I was constantly on edge. Kevin calmly said however, well it will either be the day following your scans at Hammersmith; i.e NEXT TUESDAY! Or the following Tuesday! OH MY GOD!

So I am now in the position of being ridiculously excited to be having a major brain operation! As soon as I receive confirmation of that date, I will keep you all in the loop. I am praying that it is the 10th March, so I do not have to travel back down from the North East again the following week, and, if it is on the 17th March…..I have tickets to see Usher in Newcastle on the 18th – GUTTED! (I jest, I jest  – I will be grateful for any day; but if it is the 17th – get in touch if you want 2 X Usher tickets!!!).

The Brain Tumour Research Campaign

btrc imageTo add to the success of my London trip I was able to meet with the founder of my chosen charity. As mentioned on Inside My Head Facebook Page, I will be fundraising for The Brain Tumour Research Campaign. BTRC was established by Wendy Fulcher after the loss of her dear husband John to a brain tumour. BTRC is headed by Mr Kevin O’Neill (my legendary consultant) and provides the conduit for the charity’s fundraising activities, as well as contributing to and complementing the expertise of the scientific research team. BTRC draws together clinicians and academics from Imperial College, London and collaborates with other UK and international research centres. I cannot wait to be able to maintain, help to reach, and further extend their achievements.

So I met with Wendy on Monday – what a delightful lady! This charity really means a lot to me and will fund the research of Kevin and his team to help establish better and more effective treatments for this ridiculously underfunded cancer. Their team of researchers, in the John Fulcher Molecular Neuro-Oncology Laboratory at Hammersmith Hospital, will be the people who will be studying the samples of my tumour, to be resected during my operation. Without the money raised by BTRC, this would not be possible!

I ask you to give generously wherever possible, on a selfish level I hope that with all the money we can hopefully raise together, potentially a treatment can be found to help me; on a much greater and long term scale, think of how much this charity has already achieved and therefore, just how much potential they have to make even more of a difference! – EXCITING!

I will be organising many fundraising events, along with all the efforts of my amazing friends and family.  I will update you all on our efforts as and when and encourage you all to get involved…. already in the pipe line is a Charity Ball at Wynyard Hall, Tees Valley so watch out for the details of that later this week; my amazing University of Portsmouth Netball ladies are organising a Netball Tournament/Old Girls weekend; my friend Toni will be doing a sponsored sky dive; And I know many of you amazingly kind people have expressed an interest in helping out in any way possible.

I look forward to updating you again very soon!

All my love and thanks as ever,

Anna

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