Post 34: When I’m gone…

I got my ticket for the long way round, two bottles of whiskey for the way… And I sure would like some sweet company, and I’m leaving tomorrow what do you say..?

When I’m gone, when I’m gone… You’re gonna miss me when I’m gone… You’re gonna miss me by my hair, you’re gonna miss me everywhere… You’re gonna miss me when I’m gone…”

The Cup Song, Performed by Anna Kendrick in the film Pitch Perfect… I’ve played this song endlessly for about a year now, in what I thought was preparation for last Friday, 23rd September 201 My baby sister’s funeral.  She always said she wanted this song played at her funeral. Most of us have that one song that we say we’d like played when we go.  This was her song.  I wasn’t prepared…

Anna Louise Swabey  25.07.1991 – 16.09.2016

I wanted to update Anna’s blog following her death on Friday, 16th September 2016 (eleven whole days ago), to continue her journey mostly, but also for us as a family to be able to look back at this and remember the small details that we are likely to forget amongst the blur that has been our lives for the past few weeks.

Anna passed away peacefully at around 4.30am, with our mum and dad by her side.  I last sat with her that night until about 2.30am, sharing the time with our brother, Matt, Anna’s fiancé, Andy, and my partner, Lee, having railroaded mum and dad into getting some very much needed sleep.  We had all been holed up in Anna and Andy’s house for almost two weeks by this point, sharing as much time as we possibly could with her; some lucid, mostly not, but all precious nonetheless.  Despite the impending loss, heartbreak and sadness we were all feeling, we did manage to enjoy our time with Anna and with each other, having not been in the same space together for that length of time since we were kids!

There was a thunder storm on the morning that Anna died.  It continued for hours…  We were waiting to see who was going to be the first to say she went out with a bang!  I still can’t remember which one of us was the first to make the joke (had Anna been there it would’ve been her without a shadow of a doubt!) but we said it anyway, as she knew we would. We took it in turns to sit with her for a few hours before she was taken to the chapel of rest. It was such a peaceful time and, again, something we are very grateful for.

It may seem strange to read but I know I can speak for my family when I say we were lucky to have had the time we did with Anna, and that her tumour progressed in such a way that meant we didn’t lose her sooner than we had to.  Even during her final weeks, Anna was still her usual blunt, funny self.  Brain tumours affect people in so many ways and had her tumour progressed differently or her surgeries not been as successful as they were, the side effects for Anna and for us could have been so very different.  What we all had however, was precious time together where Anna’s strength, bravery and dry wit kept us all going and inspired us to be as strong, brave and equally dry about it all.  It is what it is, as both Anna and I would frequently say.. I think it’s now our family motto!

Anna and Andy were due to marry the day after Anna passed away.  We knew a couple of weeks before, that Anna wouldn’t be well enough for their wedding to go ahead, and we had to make the very tough decision to cancel the wedding plans.  However, we all made a promise to Anna some time ago, that if the wedding didn’t go ahead, we would all go and spend the weekend at the wedding venue in Richmond regardless.  It was such a difficult weekend but a very lovely one also.. We spent time together in the glorious sunshine, had a family meal and sat round the fire sharing memories.  My youngest son Theo pointed at the brightest star and said that it was Anna shining down on us. We all like to think it was.

Anna’s funeral was held at Wear Valley Crematorium on what was to be yet another beautiful day.  Her coffin was white, and her flowers were red, white and green to reflect her beloved Leicester Tigers! Simple, elegant and very Anna… We were amazed at how many people came to pay their respects to our beautiful girl; the room was packed with family and friends from every part of her life.

Andy carried Anna’s coffin, alongside Matt and 3 of our cousins, Ian, James and Johnathan.  We are a very large and very close family, and while we know they were very honoured to be asked, we knew it would be Anna’s choice also.  We chose a humanist minister, Roger McAdam, for the service, who genuinely captured the essence of Anna.  We wanted the service to be a celebration of Anna’s life, and at her request we all wore bright colours.  I read a poem called Sometimes by Frank Brown, her bridesmaids and bridesman shared some beautiful and funny anecdotes, and Anna’s dad, Keith, ended with a moving and uplifting eulogy.  In amongst this were some of Anna’s favourite and most meaningful songs, including Smoke on the Water by Deep Purple (Leicester Tigers opening song), The Cup Song from Pitch Perfect (our favourite film!), The One by Kodaline (Anna and Andy’s first dance at their wedding), Brown Eyed Girl by Van Morrison (this was Anna and her dad’s song),  Ho Hey by Lennon and Maisy (one of Anna’s favourite songs and to be played at her wedding to Andy), and Klingande (Instrumental version) by Jubel (this was played at the Cinderella Charity Ball organised by Anna in May 2015).  Anna and I are very similar in so many ways.. Practical being one of them.. Hence our family choice not to have flowers at the funeral, but instead to request donations to both Brain Tumour Research Campaign and Marie Curie, raising a total in excess of £1200 on the day.

After the service we moved on to Woodham Golf Club in Newton Aycliffe to continue our celebration of Anna’s life, where her nephew, Theo, took a leaf out of Anna’s book and sold BTRC wristbands to the guests.  He is 8 years old and raised £173 in 2 hours! Anna would be so proud.  We asked guests to bring a photograph for our memory board, and to write a few words for our memory tree because we wanted to capture everyone’s own memories of Anna that we can look back on and remind ourselves of how full her life was in just 25 years. Anna’s attitude was to make the most of the time she had rather than dwell on the time she didn’t and we want to always remind ourselves of that.

We are completely humbled by what an impact Anna has had, not only on her family and friends, but on the people she has met in passing, those she knew at different points in her life and even those she simply spoke to through writing her blog.  In just 25 short years Anna has made a difference.  Not only has she shared a very full and happy life with her precious family and friends, but in just 20 months she has reached her fundraising target of £100,000, she has raised awareness of a terribly under-researched, under-funded, but all too common, disease, and has inspired, not only a nation, but people across the world by her bravery, determination and positivity.  What a legacy to leave behind!

With much love and sincere gratitude to everyone who has supported Anna and our family from a very humbled sister,

Victoria xx

For anyone wishing to donate towards Anna’s running total for Brain Tumour Research Campaign you can do so via her Justgiving page.14439030_10153719461947331_573556118_o

POST 27: EAT YOUR HEART OUT GABBY LOGAN!

 

Let me cast your mind back to POST 15 where I shared my Bucket List with you all. I listed one of my aims:

Have a taste of my dream job as Rugby pitch side reporter/Sports presenter – Linked in with my love of rugby and sport in general, I have always said I want ‘to be the next Gabby Logan’ or the like. I think being able to combine a true passion in your line of work, must be a real joy.”

 

Well, a certain Lewis Moody may have just been aware of this dream…

The Lewis Moody – one of the greatest rugby players, ex England Captain, England and Leicester Tigers LEGEND, rang me to tell me that he and his Foundation had organised a special day for me at the Tigers vs. London Irish match on Sunday 28th February, and that I would be interviewing a player! Whaaaaaaaaat?!

As I have posted on here, I have had the honor of meeting Lewis before, however, as exciting as the content of our conversation was, I was still in shock that my all time favourite player had RANG me!

As the day came ever closer and Lewis sent me more details across regarding what was in store for me at Welford Road, I couldn’t contain my excitement.

I simply had to share this day with you all…

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Andy, my parents, and I (all MAD Tigers fans) met Lewis an hour and a half before kick off. He had sorted us with press passes and we were able to go into the press room and see how a match day pans out for the guys covering the game. I had the pleasure of meeting Bleddyn Jones, rugby commentator for BBC Radio Leicester, whom I listened to a lot when I was at university and couldn’t get to as many games as I would have liked, similarly for away matches. Bleddyn is a Tigers legend himself, making 333 appearances. I tapped into his expertise for my post match interview ;).

We then made our way to the family room where the families and partners convene before and after matches. I had the joy of meeting Geordan Murphy’s wife and their gorgeous baby, Rex – broody much Anna?! ❤

Andy and my parents made their way to our seats in the press box, and Lewis took me down the tunnel and on to the pitch – WOW! I never quite realised how amazing the fortress that is Welford Road looked from down there; especially with the incredible Tigers fans’ cheers resonating, waiting for the team to run out on to the pitch! After some selfiesimage1 (2) in the dug outs, introductions to more Tigers legends, ‘Smoke on the Water’ started blaring through the speakers and the ROAR around the stadium and the clapping began….the lads ran on to the pitch – COME ON TIGERS!!! I have never been so close to the action! AHHHHHHH! 😀

Lewis and I then joined Andy and my parents in the press box. It was great to get a press point of view of the match, and it was great to be sat in the Crumbie stand that always produces the loudest support. Every fan was especially behind the lads on Sunday; after losing the three previous games on the trot, earning a bonus point win against London Irish was crucial to keep us in contention for a top four finish to keep us in the running to become Aviva Premiership Champions.

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I have to admit I was pretty nervous about having to interview a player if they lost…the last thing they would want to do would be to talk to me!

Fortunately, the tries came rolling in! Pheeeeeeeeew!

My brother was absolutely gutted to not be able to join us – Lewis Moody being his all time favourite player too! Having told Lewis this, we sent Matt a selfie and Lewis recorded a video message for him too – my brother’s response “What a ***king LEGEND!”.

 

Lewis selfie

Game over, and a bonus point 47-20 win under our belts, Lewis, Andy and I headed back down to the media room. I was able to watch all the post match interviews with the Directors of Rugby and met our main man Richard Cockerill.

I had told Lewis that my favourite player was a new arrival to the club Telusa Veainu. He joined Tigers following the World Cup where he represented Tonga in all four of their pool matches and evidently caught the eyes of the powers that be at Leicester. Since joining the club he has fast become a fans favourite (certainly mine!), scoring some sensational tries and adding some real class and excitement to our back line.

Telusa then appeared in the press room and was ready for his interview…EEEEEEK! I was nervous now! I felt like an ACTUAL reporter and the lights were bloomin’ bright and hot! I managed to get through my questions, only stumbling slightly under the pressure I had put myself under! Lewis and Andy were taking the micky out of me though as I said I fumbled my words because Telusa was staring straight into my eyes! Andy promptly told me I shouldn’t get all flustered like that, certainly not as a consequence of looking into another guys’ eyes! HAHA! Sorry babe!

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Lewis had kindly bought me a new Tigers shirt to get signed, so we then made our way up to the hospitality/corporate suites to meet some more players, via the changing room 😉 to get some signatures, and have a drink!

 

 I was well and truly in my element!

 

I want to take this opportunity to thank the Leicester Tigers, the players and the coaching team for making this day so special for me – every person I spoke to could not have been nicer or more willing to take some time to have a chat with me. They all took such interest in my life and wished me well for my continuing treatment.

A special mention must go to Telusa for being so lovely to interview and a great laugh! Although he did tell me he doesn’t particularly like being interviewed and that he too was nervous – sorry about that!! 😛

 

Nobody however, deserves more of a thank you than Mr Moody himself. From meeting us all at 1.30pm, up until Andy and I left at around 8pm, Lewis was with us ensuring I had the best day ever. He truly epitomises a sporting legend and is a real role model for up and coming players; he has already proven his worth on the pitch and is deserving of every accolade and trophy he has gained, but my goodness, what a genuinely kind, charismatic, selfless, TOP bloke he is!! I seriously cannot begin to describe how good of a day Sunday was, and that is all down to him. The mere fact he decided to set up The Lewis Moody Foundation alongside his wife, Annie, in the first instance shows what type of guy he is – but seriously Lewis, I cannot express how grateful I am to yourself and your charity for these memories that I will now cherish. Being an avid fan from the age of 8, this day you arranged for me– just wow! I have made it more than clear that I am more than willing to do anything I can do to help with his Foundation and I would love to do some fundraising together in the future.

Me and Lewis

Now roll on another HUGE win at home to Exeter this coming Sunday!

My ROAR will be louder than ever – TIIIIIIIGGGGEEERRRRRSSSSSS!

POST 21: LEICESTER TIGERS HELP KICK BRAIN TUMOURS IN TO TOUCH

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As I have told you guys from POST 1 on this blog, I am a massive rugby union addict, and you all know by now, my team is the Leicester Tigers. I have been going to Tigers games home, away, and abroad since I was eight years old, and even with Trev in tow, that is not set to change anytime soon!

 

 

So you can imagine my delight when I saw this article crop up on their website this week: Show Support for Brain Tumour Campaign. Although, upsetting to hear the loss of Michael, another Tigers fan, who sadly passed away at the mere age of 27, what his family are doing to help this campaign in his memory is remarkable.

If you have been following my blog, particularly over the past few months, you might be aware that I have heavily backed the online e-petition calling for more funds for brain tumour research that was launched by Maria Lester in memory of her brother Stephen, who sadly lost his life to the disease in 2014. Months ago I signed this petition and after reaching 10,000 signatures, the petition gained a response from government, unfortunately, not the one we were looking for (this response can be found on the petition page).

Thankfully, the newly formed Petitions Committee decided that this cause was worth looking into further – particularly as it was not on the agenda for the Health Committee. They wanted to gain perspectives and evidence from charity campaigners, clinicians, and patients alike to best decide if this issue should be debated in Parliament.

The Committee launched an online web forum for people to share their experiences and to show their support for more funding into research. This closed on the 30th October 2015 with over 1100 comments left on the chat; one of those comments being my own:

“In January 2015, at 23 years of age, I was diagnosed with a Grade 3 glioma anaplastic astrocytoma and was told I had, on average, 3 years to live. My whole world changed. Although I have been offered treatment and have undergone radio/chemotherapy and I am on chemotherapy again for a further 12 months, the future looks bleak. Unavoidably, this awful disease will not only take my life, but will destroy the lives of my mother, father, sister, brother, partner, niece, nephews, aunties, friends….my, the list goes on! And since being diagnosed, I have unfortunately come across and met younger, young and older people in the exact same situation; who too worry what they will be leaving their families to deal with when they are gone. I chose to try and not dwell too much on this horrific news and to turn it into some form of positive; I want to make a difference to lives like mine, and to those who are yet to be diagnosed. I decided to start writing a blog called Inside My Head (www.annaswabey.wordpress.com) detailing my life with a terminal brain tumour – I saw this as a way of helping myself, others alike, and to raise awareness of this severely underfunded cancer (of which I knew nothing about until my diagnosis). Off the back of its popularity, I began fundraising for Brain Tumour Research Campaign (to date I have raised £35k). Research into brain tumours is my only hope of living. I will not stop fighting for more funding into research until my last breath! Forgive me, for I am not a doctor, a scientist, and I by no means profess to be an expert in the field at all, but if brain tumours kill more people under the age of 40 than any other cancer – why does research into brain tumours receive a mere 1% of national cancer research funding?! …It does baffle me. My diagnosis has changed my life forever. The only change I wish for the future is that there will be a new found hope; different treatments, and ultimately, the best ‘C’ word I will have ever heard – A CURE.”

 

Consequently the Committee invited 20 of the people who commented on the web forum to a roundtable discussion at Westminster. I was delighted to be one of those people. On the 17th November I went to the Houses of Parliament to share my experiences with the MPs on the Committee. I thought the day went very well and the MPs seemed keen to listen and were extremely empathetic. I sincerely believe this is a huge move forward for not only brain tumours on the political agenda, but also for democracy in general; obviously I feel very honoured to have been given the opportunity to be a part of that. We now await the decision of the Committee…

 

What will give us added strength however, is the more signatures we can accumulate on the e petition.

We have until February 3rd to try and reach 100,000 signatures, which will guarantee the issue of brain tumour research funding to be debated in Parliament.

 

This is my final plea to ALL who read this to sign the petition. Share it with the person you are sat next to perhaps, or a family member? Let’s get over this final hurdle!

Whatever comes of this petition  it will more than likely be too late to make a difference to my prognosis however, I am almost certain it will change lives of so many others!

This is why I sincerely want to thank my rugby club, Leicester Tigers for getting on board this campaign – it means so much! #TigersFamily

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POST 8: ROUND 2, ANNA vs. TREV. TREATMENT DIARY.

Hi everyone! It seems to have been a while, and yet that while seems to have passed very quickly for me as I have been so busy!

Anna and Andy rugby

For those of you who follow my journey on Facebook as well, on the Inside My Head page, you will have seen that on Monday 27th April, I started myRound 2 chemotherapy and radiotherapy treatment. I see this as round 2 of my fight against Trev – round one being my operation. DING DING! Let’s go!!!

I wanted, for selfish reasons and personal interest, to keep an almost “diary style” of my progress during the 6.5 weeks of treatment. But then I also thought, well, this may be of help or interest to other people who are due to undergo the same/similar treatment, or help those people supporting patients, so why not post it on my blog and make it public. It may not be particularly detailed if not much is happening, but hopefully, that will be a good sign! I will try my best to add to this post daily, or you may find, as today, I update you on a few days progress all at once.

As mentioned in my last blog, my treatment will last 6.5 weeks (33 sessions) and this takes place Monday to Friday, with weekends and bank holidays off.

WEEK ONE

Monday 27th April

Day one! So, I start day one of my commute in to London (deciding to use the train while I am feeling fine and dandy) I get one train to Finsbury Park from our village, and then get the tube direct to Hammersmith where Charing Cross Hospital is. Going into the unknown, I pretty much resigned myself to the fact that there was nothing to be scared about; I knew it would be painless etc. and fortunately I was right! I had a couple of chats with the radiotherapy nurses, and then the Ward Sister talked me through and gave me my chemotherapy tablets, I am on Temozolomide. They look very “chemically” to say the least, even the bottle looks poisonous, green in colour with hazard stickers on it- I hope you enjoy that Trev! Chemo done, now time for the radio! I was taken through to a room, that simply reminded me of another MRI scanning room really, but without the noise! I lay down on the bed and then they bought out the monstrous creation of my face, my radiotherapy mask….I hate to say it, but, as ever, my mum was right, my nose certainly did make a grand appearance!!! They place the mask over my face and clip it down on to the bed to completely restrict my movement and thus ensure the radiotherapy is effectively targeted in the same place everyCake day. After checking all the measurements, there were concerns that the mask was too slack on the sides of my face…they asked if I had lost weight…I laughed and said, “I wish!!”. They made some adjustments and then the mask was fitted like a second skin, just how they like it. I was left for what felt about 10 minutes while the treatment was delivered, and then that was the job done…easy peasy I thought!

I always had in my mind that the first couple of weeks would be easy until the treatment levels slowly built up over the coming weeks. However, I think I got a bit too cocky – After having dinner at about 8pm, I sat watching tele and felt really queasy. Come 10.30pm, all of my dinner, completely undigested, made a very unwelcome appearance! I then became really emotional; I couldn’t believe the treatment had defeated me after just one day! I then became worried about how bad the next 6.5 weeks would be. I was quite harsh on myself I feel. As explained previously, these treatments can affect people in completely different ways and at different times. Although not a very good “sick person” ( I have always hated physically being sick), I much prefer being sick than to have the feeling of nausea. I then took my medication for the night and went straight to bed so they would stay down. Unfortunately, the feeling of nausea returned at 2.30am and woke me up. I lay in bed really upset and feeling really unwell, and then I was finally sick again. Fortunately I managed to get back to sleep reasonably quickly.

Tuesday 28th April

This was a new day; and it had to be better than the day before! I now knew what to expect in terms of radiotherapy treatment, and was ready to go! I was advised that I could take my chemotherapy medication at any point during the day; I decided to take mine in the morning. I thought if this did not work well, I can always rethink and perhaps take at night time. I WAS NOT SICK THIS DAY!!! YAYYYYYYYYY!!!

When in hospital, I did warn the staff that I was sick the night before. Surprisingly to me, I was told it more than easily could have been a side effect of starting the chemo tablets. The radiotherapy staff assured me it couldn’t be them being the nasty ones making me sick quite yet! They agreed that it would be clever to keep a record of how I am feeling each day, so the blog posting was medically signed off 😉 . On Monday evening and throughout this day, Tuesday, I had been taking anti-sickness medication – this had obviously kicked in and worked its magic! WOOP WOOP!

Wednesday 29th April

Wednesday, this is the day every week that I have a meeting with my oncology doctor. My appointment therefore is slightly earlier than normal to coincide with his clinic. I saw him first, chatted briefly through  how I had found the past couple of days, all very new really. I discussed the above and he said not to worry about being sick on the first night. He too mentioned that the chemo could have kicked in that quickly. He also however, said that in his experience, those who are sick at the beginning, tend not to be those effected so harshly later on; but I will not get too excited, as I know I am a separate, individual, and “special” case!!!

Another positive to come out of this meeting – MY STEROIDS DOSAGE WAS HALVED!!!! This was such good news for me! As you may have read previously, I have piled on the weight since January thanks to those little bastards! I am down to taking only 0.5mg now, which is nothing in comparison to what I was taking a while back, so I am desperately hoping my hunger may disappear too!

Thursday 30th April

Easy day of treatment and no sickness! I also had my bloods taken (this will be a weekly occurrence to keep an eye on me).

Friday 1st May

Can you believe it is bloomin’ MAY?! Where has this year gone already?! …… Oh yeah, stuck in hospitals!!!! 😦

As I had to travel back up to the North East straight after my treatment this day, due to my Charity Ball, my Dad drove us to the hospital, so we could hop straight into the car and on to the motorway (although “hopping straight on to the motorway” was slightly optimistic – the traffic was HORRIFIC!).

The journey to the hospital was not the best; I was feeling really queasy again! I had Asda carrier bags doubled up on my lap as I was adamant I was not going to be able to keep this in! I did though!

I went in for my treatment; job done! FIRST WEEK DOWN!

Then we just had the small matter of a 7.5 hour journey up to the North East; it hurt. ALOT! But we made it!

 

The weekend

So, as it was a bank holiday weekend, I had 3 days off treatment yayyyy!

I will say nothing more, as I will be writing a separate post, filling you in on Cinderella’s Charity Ball at Wynyard Hall.

Sickness wise, I was still slightly fragile on Saturday.

Sunday and Monday, I was fine; just shattered from Saturday nights antics!

WEEK TWO

Tuesday 5th May

After three days off, it was time to get back into action! The day started off Blog quotewell, I woke up fist pumping the air…I woke up at 11.15am! QUARTER PAST ELEVEN!!! This is the longest I have slept since I was taken in to hospital on January 9th. I was over the moon and I woke up feeling super chuffed! Another day down!

Wednesday 6th May

Wednesday is doctor day. We got the train just after 9am to get there for 11am clinic. All was fine with my blood tests from the previous Thursday, my steroid dosage is now down to 0.5mg alternate days! Yayyy! And, the ball is now rolling for me to meet with a dietician/nutritionist to discuss the Ketogenic Diet. This is something that was mentioned to me at the very beginning, as a possible way of helping to get Trev to do one…at present, there is very little research to suggest this diet (which, from what I hear is similar-ish to the Atkins diet. It basically starves the tumorous cells of glucose- glucose helps them to grow as far as I can gather- I will be sure to post more detail when I know it myself) is by any means a definite method of preventing tumour growth; but I am certainly willing to give anything a go!

I had to just quickly add on to this day’s post…I had a bit of an emotional evening. I got into bed, ready to sleep, and stupidly went on my phone. I came across the updates from Stuart Ridley’s journey – The Stay Strong Stu campaign. I first came across this campaign as Stuart, young farmer and a keen rugby player, was too diagnosed with an inoperable brain tumour and he lives not far from me in the North East. Unfortunately, Stu’s tumour still remains inoperable and he underwent a course of radiotherapy treatment. However, as he posted to his page, after his treatment, a scan revealed it had sadly not worked and his tumour had in fact grown. Stuart was given a 6 month prognosis. Even more devastating to this story, he is only 25 years old. I wept in bed, as I had seen a post from his Mother, updating his supporters that he was currently “slowly slipping away”. Although, writing this blog and fundraising certainly does help take my mind off things, reading this sad news really did hit me hard. I think it brought me back to reality slightly of quite how horrific this disease is. My thoughts are with Stu and his family and friends, he is a real inspiration and his Stay Strong Stu campaign has/is and will continue to be incredible.

Thursday 7th May

My bloods were taken today. And my treatment was all on time. This day went very quickly, and for that I was glad…I think the tiredness is slowly beginning to take its hold. I am very sleepy!

Friday 8th May

Boy oh boy I was tired today! Treatment was on time which was fab and I collected Trev’s dose of poison for next week. When I got home, I went for a nap…FOUR hours later I returned. I must have needed it! Now I look forward to 2 days off 🙂

The Weekend

I was very happy to have this weekend to totally chill out and relax…however, it was not quite as relaxing as initially expected! My rugby team Leicester Tigers found themselves playing Wasps at the Ricoh Arena, this was a MUST WIN game for my boys to ensure for the 11th season in a row I was going to be attending the Premiership Semi Finals! In the build up to the match I was feeling really queasy  – and I was unsure if this was linked to treatment side effects or just the sheer magnitude of the fixture!! It was a stressful 80 minutes in our household but Tigers played incredibly well and left the fate of being in the Semi Finals again this season in their own hands – on to beating Northampton Saints next weekend!

 WEEK THREE

Monday 11th May

Another week begins! I was feeling particularly tired again this week. I felt like an old lady, certainly not my 23 year old self! Andy was down again this week, so it was lovely having his company and we made our way into hospital again. Day one of week three sorted!

Tuesday 12th May

Today was another time efficient session and I seemed to be in and out in no time! When arriving back home, I had started to notice my hair was moulting slightly. This was no major scare to me at the time as I have such thick natural hair, it has moulted a lot in the past…much to the annoyance of the wonderful people who are lucky enough to live with me 😛 . I, however, was slightly more dubious, and suspected that this was the start of me losing my hair. I rang my Mum back up in the North East and told her of my concerns, fortunately, my gorgeous nephew Theo was also on hand to ease my worries. He confidently told me that I wouldn’t look like an idiot if my hair Gollumstarted to fall out, I would just look like Gollum…BRILLIANT! And what worries me the most, is that I know children give you honest answers and opinions!

Wednesday 13th May

I woke up feeling quite good today, with seemingly more energy than the past week or so. Today is doctor day – we saw my oncology consultant, went through a few queries, organised some more prescriptions and then treatment was completed really promptly today. We drove to the hospital today, I had an eye test with my optometrist aunty in Southfields and we stayed the evening at her house, which was lovely as we got to catch up and I saw two of my cousins! Unfortunately, after my eye test, we wandered back to my aunty’s house and I began feeling really sick; which I eventually was. I all of a sudden felt completely zonked and had to take myself upstairs to lie down and sleep it off a bit. I also lost ALOT of hair when I brushed through it before bed; the hair loss was certainly kicking in.

bald hat

Thursday 14th May

Time to drive to the hospital from my aunty’s; I was still feeling ropey, but after going for my blood tests, my treatment all ran on time and we were home quite quickly. When I got home I knew it was hair washing time. I think sub consciously, certainly without realising before this point, I had been putting off washing my hair for as long as possible. I had been warned that it would be in the shower where I would lose the most hair. Before I went in the shower, I sat on the sofa, brushed through my hair, as I rather it fell out before than during my shower. Tears came from nowhere. I was really scared about having a shower! What an idiot!!!!

Not much more came out in the shower, but my hair was certainly feeling horrible. I can’t use a hairdryer to dry it after showering anymore, as the heat is bad for my head/scalp. I can’t straighten it for similar reasons. And, I have to use baby shampoo so it is gentle on my skin. So basically it feels horrendous and I cannot style it at the moment. For me, my hair was a big thing (literally, most of the time!) and it has definitely made a difference not being able to “do” my hair before going out anywhere etc. put a bit of a downer on my mood shall we say.

Friday 15th May

I woke up with my scalp itching really badly, I brushed lightly through my hair and my goodness ALOT of hair came out. It was this day that I really started feeling like a “cancer patient”. I had bad bald patches on the right hand side of my head now. But, MY MUM WAS COMING DOWN TODAY!!!! Yayyyy! It was perfect timing; just when I needed to see her. My Dad and Andy had been doing a fab job keeping me smiling, laughing and most importantly helping me travel into hospital every day, but just as I was losing my hair significantly, it was definitely time for a mum hug 😉 . I think it hit her quite hard as well when she arrived. Mum and I went by train to treatment today, and then when we got home she sat and brushed through my hair and rubbed a load of E45 cream on my dry bald patches. The cream was such a nice feeling on my scalp! She admitted she was holding back tears, but no way was she crying because I was being so strong, bless her! To finish off my third week of treatment, I had booked for my parents and Andy and I to go and see Pitch Perfect 2 (for people who may not know, I am a Pitch Perfect mega fan and between my sister, niece and I, we know all the dance routines from the first film!). It was a fabulous night, and just what I need to pick up my spirits!

The Weekend

Time to chill/ get super nervous and excited over the rugby! It was Derby day on Saturday and since the previous weekend, I had been getting myself worked up over this fixture – I am still certain my sickness on Wednesday was down to nerves and stress rather than treatment! 😛

Without giving you all a running commentary of the games highs and lows, I am SO HAPPY to say, that for the 11th season running Leicester Tigers will be in the Semi Finals of the Aviva Premiership! WOOOOO! And I am SO DELIGHTED to say that we have managed to get tickets for the semi final in Bath for next weekend! This ties in beautifully with the bank holiday weekend and a rather significant birthday for my Mum on the Monday (I promise I won’t tell anyone your actually milestone birthday, Mum – but trust me, you look awesome considering you are turning SIXTY!!! When I beat Trev and live till I am 90- odd, if I look as good as you at 60 then I will be happy 😀 )

A chill out day on Sunday then I was ready to rock and roll again. COME AT ME WEEK 4!

WEEK FOUR 

Monday 18th May

So, I had a bit of an amusing start to the day today; whilst getting ready, I pulled my top over my head and consequently watched what I had left of the left front of my hair fall out! Although I was sad-ish, as this now did mean I had nothing left on that side, it was also quite funny how it happened and I had both Andy and my Dad on hand, laughing may I add, to help me see the funny side of it all.

anna bald blog middleanna bald blog 2anna bald blog

It really was now – operation GET ME A WIG! I am 100% certain that I need a wig at least just to last me the weekend, then I can always get a nicer one for the longer term afterwards. My Dad managed to arrange an appointment for me to visit Trendco in London tomorrow WOOOO! I have absolutely no idea about wigs, but fortunately I can draw upon my fellow brain tumour warrior, Charlotte, for her expertise 😉 . As I have previously said, if I can look half as good as she does in a wig, then I will be a happy bunny! She recommended Trendco, as did Wendy Fulcher (founder of BTRC).

I was slapping the E45 cream on this morning. I cannot explain how itchy and irritable my bald scalp is – it is DRIVING ME MENTAL!!!!!! I let it soak in, then the hat was on – off to the hospital we went (today by car as the weather was horrid and I (here I obviously mean Andy but don’t want to embarrass him) did not want to ruin my hair 😉 .

During the journey, I had a call from a lovely lady called Laura who works for CLIC Sargent and she is based at Charing Cross. CLIC Sargent are another amazing charity who help children, teenagers and young adults, 0-24 years of age, to deal with a cancer diagnosis, and all the nitty gritty stuff that comes along with that – emotionally, financially, logistically etc. It all fitted in quite nicely; as we drove today we arrived at the hospital an hour early and Laura was available so we met up when I arrived. She was extremely helpful and I told her about my quest to now get a wig. She said she would make some calls and get back in touch with any progress she had made for me.

Treatment was, again, pretty quick today.

During the journey back, I received another phone call; this time from another lovely lady called Wendy from the Little Princess Trust. I had already heard of this charity as Helen Ward, one of my former work colleagues when I had my first job at 16 years of age, is so kindly doing some fundraising for me. She has decided to chop off her 23 inch ponytail in aid of BTRC, then, even more incredibly, she is donating this amazing amount of hair to The Little Princess Trust. This charity provides real hair wigs for children who have lost their own through cancer treatment, they receive no formal funding, therefore rely on fundraising efforts. As Helen has showed, they also rely on the donations of hair to make some of their own wigs for smaller children. What I was not aware of, however, is that they also support people like me. This phone call had me in tears. Wigs can really, really vary in price from the NHS allowance wigs (£80), to thousands of pounds for high quality real hair wigs. For some, any price is simply too much and they would go without; this incredible charity ensures that is not the case for children, teenagers and young adults like me. Wendy called to tell me that whatever wig I choose at Trendco tomorrow will be covered for by the charity. It just so happened that Trendco work alongside the charity, and after Laura had rang the charity, it has all been arranged. WOW! I am hoping, what is left of my hair I will be able to donate to them too. I am fortunate that although I have lost a lot of hair, that my hair is so thick there is still a lot left at the back and down the middle for the time being. Roll on some serious selfie taking in my wig soon 😉 .

Tuesday 19th May  

I have woken up this morning, already excited to go wig shopping this afternoon.

I have to admit, that feeling has just been TOTALLY TRUMPED!!!! PkjoreifkrbeglhbldfbvjSFLwefbwehjf!!!!! I AM SO EXCITED! I have just received a personal video message from MY IDOL MIRANDA!!!!!!!! I simply have to share it with you all, and in fact, I think she may even deserve her own post, so hold that thought and probably look above to Post 10.

Now time to compose myself and get ready for treatment and wigs ( *dragging myself down from my Miranda cloud of happiness* )

So treatment was EARLY today – wowzers! So I was in and out super fast. Then it was time to navigate our way to the wig shop. Unfortunately as I was sure I wanted long hair, to keep to what I have been used to for so long, there were only really 2 options – one of which would not even fit on my massive head! (Embarrassed face). I tried on a few different colours, but blonde was the only one that looked right. I have not yet had time to style it etc. but it still looks okay and I cannot wait to have a proper play around with it. Here , for now at least, are some poor selfies that I quickly bounced to friends and family earlier…just to give you a taste 🙂 .

wig testwig test 2

I need to say a MASSIVE thank you to The Little Princess Trust! Without their help, I do not think I would have been able to come home tonight with a real human hair wig, that looks so natural and makes me feel a LOAD better – unsurprisingly I have called my new wig, Miranda!!

Wednesday 20th May

A very easy trip today, and doctor day enabled me to stock up on cream for my increasingly balding head.

Thursday 21st May

So, I decided to try out another wig shop closer to home, Hair to Ware, cleverly, located in Ware 😉 . I wanted to just check that I had been made aware of everything available. The staff here were absolutely amazing – hugeeeee shout out to them (Stuart and Katie).

I was made to feel so comfortable and relaxed and I had a laugh! Mostly because Andy and my Dad were sat directly behind me and I could see them in the mirror as I was trying on different styles. As I headed towards trying some of the more ash blonde colours, I couldn’t contain my laughter at this point…this particular wig was rather on the ashy side and I had a glimpse of what I will look like when I am old and grey (because I WILL live to be old and have hair this colour), but I certainly was not keen on having it at 23 years of age! They showed me a style about the same length as Miranda, but informed me they can order it in a much longer version….so I picked two shades of blonde (still being boring and keeping it safe for now until I become a bit more ballsy and rock a Rihanna look!) and they ordered them in for me to try 😀 … so watch this space!

We then decided to drive straight from Ware to the hospital as I had to go and get my bloods taken today anyway. Bloods were done, treatment done, cheeky subway later (new addition to Charing Cross hospital that has brightened up occasional treatment days now 😀 – certainly for Andy! ).

Friday 22nd May

MY MUM ARRIVED TODAY!!! I was soooo excited to see her and it also meant that I was one treatment away from our fun filled 3 day weekend of rugby and birthday celebrations! WOOOP!

Mum and I got the train in together and allowed “the boys” some very well deserved time off. It was lovely catching up with her! As a result of this catching up, the journey seemed to pass by very quickly and we were in London in no time!

One thing I haven’t really mentioned on this post to date is that by A LONG way I am the youngest person I see on my trips to the radiotherapy department. I find it quite odd seeing the, (how can I put this politely?), slightly more mature people than I, and how they look at me when I come in for treatment. It must be quite a shock to see someone so young, I suppose. But, then again, I find myself sitting there and watching pretty much the same people (normally my timings run pretty consistently through the week) day in day out. Obviously, I do not know anything about these people, just like them with me, but each of us can appreciate, to some extent, what everyone is going through; I try my hardest (sorry if you caught me on a bad day) to say hi and smile to all I see in there each day. Although I do question at times, “how is it fair that I have such an illness at only 23 years of age?!”, I am so blessed; I am young and fit – these factors must be having a huge impact on how I react to and cope with treatment, and I have the most amazing friends and family – I have never had to make the trip into London on my own once; if I wake up in the night and I feel sick, I am never alone; if I have a breakdown, I always have someone there to grab me a tissue and give me a hug. What makes me more sad than me being ill (and probably quite unnecessarily so, but I have always been a bit hyper sensitive when it comes to the elderly), is that there are so many who come in for treatment using NHS provided transport, by themselves, certain people I have seen weaken, lose weight, struggle to make a cup of tea etc. In that respect I am glad I am young and what I get from Trev, I can give just as good back; the fight is well and truly in action!

Treatment finished, Mum and I gave a WOOOP WOOOP as we walked through the doors; Week 4 was over and to make it even sweeter this marked the beginning of THREE DAYS OFF!

On returning home, my naughty boyfriend had been on a shopping spree, fortunately setting aside some time to buy some clothes for his upcoming holiday. But, thoughtful as ever, he also got me “The C Word” book. For those of you who missed the BBC Film on a few weeks ago, you MUST watch it! It was so moving, yet hilarious at the same time. Lisa Lynch, played by Sheridan Smith, was one INCREDIBLE woman. Until I came Lisaacross this on the BBC, I had not heard of Lisa before. I watched this film in utter disbelief as to how similar her thoughts and humour were to my own. Everything she said I could relate to. And she too chose to write a blog to help her get through “The Bullshit” as she called it. She fast became a total inspiration and since watching it, I said I MUST read her book. Now I could 😀 .

Throughout this week, more and more hair had been falling out. I think this is karma for me always taking the micky out of my Dad’s receding hair line for years; mine now looks like a JOKE!

bald 3bald 4bald 5

In actual fact, my mum came up with a particularly good one – as my hair, although very thin compared to normal, was hanging on at the back (ish), she made me put black sunglasses on; she then proceeded to play Stevie Wonder (LEGEND). Fortunately for my Mum, I found this hilarious, and then went on to send snapchats to friends and family who I know would see the funny side also!

Anna Wonder

Theo, my “always puts a smile on my face” nephew, is now calling me Anna Wonder. Fabulous!

Facetime

The Weekend

Wooooo! I have never looked forward to weekends as much since when I was back at school or college. My job previously meant I worked one day of the weekends, so this full weekend off thing was a real novelty. And even better, this was a bank holiday weekend!!!!

I don’t know if I have mentioned before, but I am a huge rugby fan 😛 , and this weekend was the Aviva Premiership Semi Final Bath Rugby vs. Leicester Tigers. I had prepared myself for the fact that this weekend would not be a chill out one, and in fact the exact opposite – hoping for lots of cheering, nerves but eventually total joy and excitement when we got through to the final!

We drove down to Bath, the sunshine was out 😀 yayyy!!! It was time for Miranda to make her first public appearance, and I am not going to lie – I was bricking it! I am a very self conscious person at the best of times, and despite my nearest and dearest (who I know would tell me if I look awful) telling me the wig looked fab and natural and they couldn’t tell, I could, and I was petrified. I had a word with myself in the mirror. I knew I couldn’t go out with my Anna Wonder hair doo ( I decided that would be too much for people to handle, and I would have all the cameras on my amazing hairstyle, and the poor fans who couldn’t make it to the game live, would be gutted to not get any coverage on BT Sport!); for the time being, I could not have my lovely thick locks back (obviously when I had those locks I moaned and have tried several methods- colours, products, extensions, to make them better – right now I would do ANYTHING to get them back- so be happy with the cards you are dealt peeps!); so it was Miranda, or miss out on sunshine, fun times with my parents and Andy, and a Tigers win; Miranda it was! After fiddling around, trying to make it look as natural as possible, I was ready for it!

Andy rugby wigMum and Dad rugbyAnna Rugby wig

Bath is a beautiful city whatever the weather, but my goodness, with the sun shining down it looked better than ever! I was expecting some funny looks and to feel extremely self conscious, but surprisingly I didn’t! I was far too carried away with enjoying the sunshine, my amazing company, watching the other semi final on television, and dealing with the butterflies in my tummy about our upcoming game! Walking the short distance to the ground, I felt so content.

Unfortunately, my happy little bubble was abruptly burst when Bath came storming out and scored their first try (first of many unfortunately). Without giving an entire review of the game….I was an upset Tigers fan, and the final was not meant to be this year (only positive is that I can now attend a provisional wig fitting appointment I made at Hair to Ware next Saturday when the final is!).

On returning home on Sunday, I did find some time to chill out, which was lovely. Even better, I had quite an appetite and so I ate and watched the last day of the football season on tv…in case you didn’t hear me shouting – It was a much better day for my football team!!! Stoke City beat Liverpool 6-1 YES STOKE!!!! I think they must have heard how heartbroken I was the day before 😛 .

WEEK FIVE

Monday 25th May

So, normally I would be talking about going in to hospital AGAIN, however today was BANK HOLIDAYYYYY! And, not only that, it was my Mum’s birthday! HAPPY BIRTHDAY MUM!!!!!

I was delighted that it tied in with a day off treatment for me and we made the most of it!

Mum was smacked in the face by these delightful balloons when she came downstairs to help remind her what significant milestone birthday it was today, in case her aging memory had failed her! 😛

Mum 60

We went out for a lovely meal, and sang and danced around the house to The Vaccines (tickets to their tour being one of her presents). And the highlight of the day for me (and I hope for my Mum), was seeing her face when she opened her pressie detailing that we are going to see England vs. Wales in the Rugby World Cup in September!!! This is one of those presents that please ALL of us (I used to call these types, selfish presents, but she was literally over the moon!). But, yeah I AM GOING TO SEE ENGLAND vs. WALES TOO!!! AHHHHHHH!!!!

Ballonsworld cup tickets

My Mum, well and truly, has throughout my whole (nearly) 24 years been my bestest of best friends (don’t get me wrong, I ‘hated’ her when I was a teenager when she would moan if I asked for a lift, or she wouldn’t let me stay out that extra hour later), but god damnit she is ALWAYS right, gives the best hugs and is my rock. A special mention however, has to go to her for her support during these past 4 months. As a whole family, our lives have been (quoting the Fresh Prince theme tune – which I have now just broken into) flipped turned upside down (“Now I’d like to take a minute, just sit right there….” sorry!). What has been my main concern from the beginning has been and always will be the effect that bastard Trev will continue to have on my loved ones. I know I just have to deal with it and I simply have to stay positive to give myself the greatest chance possible of prolonging my life; how I would act if, for example, Mum and I switched positions, I do not know if I would cope! The feeling of utter helplessness would engulf me, I reckon. But I tell you what, she is not letting any of those horrible feelings and worries get in the way of her unwavering support and the laughs we continue to have!

I am certain that Mum and I, and our whole family will share many more birthdays together for a lonnnnng time to come!!

 

Tuesday 26th May

There it was, that Monday feeling; it just came a day later. Hmmmf. Back to the hospital, but with the hope that this week would fly with just 4 treatments. Tuesday was a simple visit.

Wednesday 27th May

Doctor day today; and quite a funny one at that! After telling me everything was looking good with my bloods etc. and me not having any particular issues, he proceeded mentioned that the ward sister had been reading my blog! He then said that both himself and my oncology consultant sat down the other afternoon to read it themselves, until they were called to see to another patient! I jovially commented that I would need to make a few amendments to the blog very swiftly and take out all the bad things I had been telling you guys about them :p . So, I now see this as their test … let’s see if by next Wednesday they have read this part of my blog!

Thursday 28th May

The monotony of the treatment had well and truly sunk in now (I reckon it had probable sunk in before today I just try my hardest not to moan too much to you all). I just did not want to go anymore!!! I WAS IN A GRUMP! I just wanted to pull a sicky (and for once, I was 100% actually feeling SICK! Sick to the back teeth of going to the hospital every day, sick of the disgusting smell my radiotherapy mask now seemed to carry – unfortunately probably from my wrank chemical filled breath – sick of feeling sick, and SICK OF HAVING CANCER!); but, unfortunately, this treatment, although making me feel sick, is something that does not allow me to have more days off other than my weekends.

Sorry, rant over!

Bloods taken, treatment done, it was lovely to come home to four friendly faces – Andy, his parents and Ruby (aka my best puppy friend). We had a lovely meal and it made a more than welcome change to my usual monotonous routines. I am even more lucky to have a second supportive family J .

Friday 29th May

I woke up this morning and most certainly was consumed by that FRIDAY FEELING!!! I was desperate to see the weekend as my grump seemed to be getting worse! I did not want to see my lovely second family leave and head into hospital AGAIN 😦 .

But after dragging my feet to Andy’s car, we were on our way, and out before I knew it! FIVE WEEKS DONE! Another week bites the dust!

What I am now loving being able to say is…. I only have 10 more days (2 weeks) of treatment left to endure, and then I have a nice little break!

Although on a high from the end of the week, that evening was tougher than expected – I was feeling really queasy and from that developed horrible sadness; I felt sad to my core. I just cried and cried and cried. I was so fed up!

Just to update you also, I have made a massive dent into “The C Word” book this week – My goodness I have been in stitches on the trains. Lisa Lynch – you absolute BEAUT of a woman and what a shining star you must now be in the sky! The similarities are, however, beginning to scare me – I concur with literally everything she writes. If I can be one millionth of a writer, motivation, inspiration to someone in my lifetime, as she is to me, then WOW!

The Weekend

I was so relieved for the arrival of this weekend – I was zonked!

As already mentioned, I had an appointment at Hair to Ware booked for today. Although a struggle to get out of bed to make my 10am appointment, it was most certainly worth it! My longer wig had been ordered in two different colours of blonde for me to try on and one was slightly darker and a lot more natural looking. I fell in love with it. So I am pleased to introduce you to, Britney…

Britney

I must take this moment to reiterate quite how lovely the staff are here. Katie who looked after me today went above and beyond to make me feel comfortable, and to ensure I did not leave the salon until I was 100% happy with my wig. As I had continued to lose more and more hair this Plaits to goweek, I decided to get rid of what was left so my wig could sit better, and, most importantly, so I could do my bit to say “thank you” to the Little Princess Trust. I was still able, thanks to my thick locks, to donate two plaits to the charity, which I hope will help make a wig for a child also suffering with hair loss due to cancer. All I wish is that I had the “balls” to do it sooner, so that more of my hair could have been donated. I think I was clinging on to the hope that it may not happen to me… and I guess that isChop chop only natural, but certainly with hindsight, I would have donated it all at the beginning. So now I find myself rocking the most bizarre hairstyle. I will let you come to your own decisions, but I have been told I look like a Jewish boy, or, according to Theo, Alan Shearer?! The latter had me in stitches!!! *High five Theo!!*

Hair shaved

The rest of my day and Sunday were simply RELAX CENTRAL! It was heavenly – and to let you in to a little secret…I didn’t even change out of my pyjamas on Sunday!

I went to bed around 11ish and then I was rudely awoken around midnight – I was in agony. I had a really bizarre pain in my ribs/diaphragm that made me feel like I couldn’t breathe. It was really scary! I tried my best to keep calm and eventually it wore off for about 5 minutes, before it kicked in again. I was eventually able to drift off back to sleep. I woke up and had to check with Andy if it had all been a nightmare; he confirmed it was real! I was hoping it was something completely unrelated, but knew I would have to mention it to the doctor on Wednesday.

WEEK SIX

Monday 1st June

Pinch and a punch and all of that…blimey JUNE?! Can’t believe Trev has taken up SO much of my life already, 5 months you have had all of the attention mate – give it a rest! 2 more weeks to go!

Treatment was prompt and we were home really quickly (I have decided to go by car now as I am feeling more weak and queasy). So I make sure I always travel prepared; sick bowls at the ready…

Sick Bowls

After having dinner, I sat watching tele allowing my food to go down before bed. I was feeling really sick 😦 and so fed up! Unfortunately, not longer after, I was sick; and I just cried! Boooooo!!

Tuesday 2nd June

After a good sleep, I was ready for another day. I then received a phone call from the radiotherapy department informing me that there were severe delays due to machine servicing and one not in action. It was great that I was made aware of this before we were left and I was told if I came in around 5pm, all should be back to normal; which it was.

Due to the late finish, and the imminent earlier start tomorrow, Dad and I stayed with my Aunty in Putney tonight. It was lovely to see her and catch up with my cousins. My food stayed down and I had another good night sleep. The queasiness, however, continued.

Wednesday 3rd June

Doctor day. Unfortunately, both this appointment and my treatment time were delayed today. To be honest, I think I have been very fortunate that there haven’t been too many disturbances/alterations to my treatments throughout the weeks of coming to the radiotherapy department. We were therefore in hospital for slightly longer than normal, and as the summer is kicking in, temperatures were quite high in London and as a consequence, the waiting room was really muggy and I felt ROUGH!

I raised attention in my appointment, that my nausea had been a lot worse, and my anti sickness tablets were altered slightly, and my enemy, steroids, made an unwelcome appearance. As an accumulative treatment, the radiotherapy levels have obviously now built up inside of me; as a result, radiotherapy has caused my brain to swell, and thus sickness follows. Steroids are a way to reduce this swelling and my queasiness. As I said to my Mum when I told her, “I would rather pile weight on again, than constantly feel sick!”. I was warned at the beginning that this may be the case, so I am preparing myself to balloon again! 😦 .

After my check up appointment, and with everything seemingly fine (I did mention my breathing troubles the other night, but this did not raise any concerns), it was treatment time, and then the best part; home time!

 

Thursday 4th June

Continuing to travel by car, as now I can’t really face public transport, today was quite a simple one. And, an added bonus being that Andy was waiting for me when we got home 😀 !

The steroids had kicked in this day and given me side effects I had not previously experienced. In the past, when on a stronger/higher dosage of steroids, I was recovering from operations, and therefore extremely sleepy. I had been warned that steroids can cause issues with sleeping patterns and make it hard to sleep. I woke up at ridiculous o’clock and really struggled to get back to sleep…I felt exhausted, but could not settle. Oh well!

Friday 5th June

Andy drove me in today; treatment completed. Fortunately, I was not feeling too sick. This was fortunate because today was slightly different to all my normal monotonous days. We had another ball to attend!

This time round it was The Brain Tumour Research Campaign’s Annual Amber Ball, which Wendy had kindly invited us both to. I was worried in Britney Ballthe build up to the day, that I just simply would not be well enough to go, but all was looking good! Dressdrinks at hurlingham and tux on, (and my new wig Britney!) we headed to the exclusive Hurlingham Club, London. I treated myself to a glass of champagne and wine and enjoyed the most delicious meal – the most I had eaten in a fair while! It was so fantastic to see how many were there to support this cause, this campaign!

Andy and I ball

What was even more special for me, was to see my super surgeon Kevin O’Neill! The last time I saw him, I was coming around from my surgery back in March (since then I have been under his fantastic oncology team). He came over gave me a hug, and began by apologising for not being able to attend the Cinderella Charity Ball, and enquiring how I was etc. It was fab to see him and I had to pester him and Wendy for a photo to share with you all. Most amusingly, I thanked him for leaving me with such a neat and tidy scar, to which he replied that he was happy to see all my hair had grown back and how entirely invisible it now was!; I laughed in his face and asked if he was kidding?! He seemed genuinely baffled. I had to literally lift Britney off my head and say I was bald and lost all my hair! Britney had Kevin’s seal of approval, and I was sold! 😀

Kev and Wendy

It was nice for Andy to finally meet Kevin as well. Andy shook his hand and thanked him for “giving me a chance”; Kevin replied saying he had not finished with Trev yet, “we will get rid of him somehow!” LEGEND.

It was a fantastic evening, at a lovely venue, surrounded by incredible people. I thank Wendy and all the Campaign’s supporters etc. The crazy amount of money made this night, may just help towards finding a cure to save my life!

The Weekend

Before leaving for home, we all went on a wonderful wander in the Richmondsunshine around Richmond park (sneaking in a cheeky bacon buttie en route!). I was then able to chill out for the rest of Saturday and the entirety of today! Head covered, and sun cream on – the sun was shining brightly today and so we made the most of the sunshine today. I also made rice krispie and cornflake chocolate cakes! Hehe! Top weekend if you ask me!

Bloody steroids – My Sunday nights sleep was ruined…I woke up shattered all i need is sleepat 5.45am and could not get back to sleep! I lay there over thinking what felt like everything, and (here is where I get mad at myself), I blubbed! Like a big baby tears just streamed down my face. I was thinking about how, even when these 7 weeks of treatment are over, and I am more “free”, nothing really will have changed. I will always have Trev! I will never be given the “all clear”. And whilst I may not have to be making daily visits to hospital, my life will still be rudely obstructed by this idiot tumour inside my head! I needed sleep, I was emotionally unstable; but I had Andy by my side to stroke my bald head (there are parts that are ridiculously soft and I find it very therapeutic!!) and calm me down. GET A GRIP ANNA!!!!

WEEK SEVEN – FINAL WEEK!!!!!

last weekMonday 8th June

Despite the early morning breakdown, today was the last time I would have the radiotherapy Monday morning feeling!!!!

My queasiness had kicked in rather early and was present ALL day and night, but fortunately treatment was all on time today. I even did some cleaning when I got home!!! (My Mum is arriving again in the morning, so I felt obliged to really! 😛 ). My appetite had really gone today and my stomach was not having any of it. I am just about to try and get settled in bed and hope for a more peaceful, drama free sleep….watch this space.

Minions sleep

So truth of the matter is, we ended up getting into bed and then watched a good hour and a half of Rugrats and Recess cartoons!! I am too cool!

 

Tuesday 9th June

Mum arrived this morning 😀 😀 😀 wooooo! After lots of mum cuddles and catching up, it was time to head in to hospital. And again, I found myself throwing a hissy fit! I just did not want to goooo 😦 .

The traffic was pants, and when we finally arrived, I have never seen the waiting area so busy! So many new faces, no empty seats, and delay warning signs up; hmmmmph!

Fortunately, it was much less of a wait than expected! Queasiness has been quite bad today and I am just in a foul mood…I reckon Mum probably wishes she didn’t venture down the A1 today!

Tonight we sat down all together to watch tv – a programme about guide dogs to be precise. I had to tell you this to highlight my complete and utter dog mumemotional instability at the moment… I was in absolute floods of tears, literally hysterically crying! What bloody amazing dogs though! The one that got me was a guide dog who had to be put down to avoid further suffering from cancer – I tell myself off for crying over myself having cancer and yet I sobbed my heart out about a dog. This sums me up good and proper!

 

Wednesday 10th June

I felt like a school girl today. I felt as though it was my last day of lessons before the summer holidays, Thursday and Friday being the days where I am allowed to bring in videos/dvds to watch!

It was my last doctor day today. I was armed with a list of questions to tick of my list; I am not due to come back to hospital after Friday, until July 14th. The make or break question on my list was, “am I allowed to fly?”I knew after my operations that I was not able to fly for a significant period of time due to swelling, inflammation in my brain etc. I was also more than aware that they way radiotherapy works, it too, causes swelling. I am, however, desperate to jet away for a break. Nothing too ridiculous or far away and somewhere where I can chill the hell out and not have to make a trip to hospital every day! Fortunately, I was given the nod! I was given advice as to what they would recommend in terms of where to book, how to act sensibly with the sunshine etc. BUT I AM ALLOWED TO FLYYYYYYY! YIPPEEEEEEEEE!!!!

I stocked up on my medication… there is a lot! We discussed the next stages, in terms of coming back for my scan on July 14th; this scan will enable the team to see what Trev has been up to. I have been warned that they would not be expecting to see any reduction in size. Trev staying the same would be more than good news. I did also get warned that even 4/5weeks down the line, there may still be swelling as a result of the radiotherapy treatment, consequently I should not be alarmed if the scans indicate Trev is enlarged. The 14th will also be the day I start on my next course of chemotherapy. But hey….I will give myself time off from even thinking about that yet!

Thursday 11th June

Sleeping patterns all over the shop, queasiness levels blehhhhh ….it was Thursdaylovely waking up this morning being able to say this was my penultimate treatment! Last blood tests done for now, treatment completed, I was able to enjoy a bit a sunshine in the garden when I got home. 🙂 .

I am sat here typing this part of my treatment diary tonight and I feel sick with nerves and excitement I think..I cannot believe tomorrow marks the end of Round 2 against Trev!

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.

quote

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 1: Life with a Brain Tumour

Anna SwabeyHi I am Anna Louise Swabey, I am 23 years old and I have recently been diagnosed with a brain tumour. (It still feels bizarre when I write that down or say it out loud.)

I have decided to start writing about my ‘brain tumour journey’, in the form of this blog “Inside My Head”.

Why start a blog?

By writing this blog I hope to achieve 4 things:

  1. On a selfish level, I am hoping that expressing my thoughts and feelings during this difficult time will be a good coping mechanism for me.
  2. I want to support others who may be experiencing a similar battle. Even if one person reads one blog post and can relate to how I am feeling, and it makes them feel like they are not alone, I will view that as a success.
  3. I want to raise awareness of Brain Tumours themselves. Before I was diagnosed, I knew absolutely nothing about the illness. Now, after further research, I have discovered that brain tumours kill more people under the age of 40 than any other cancer. It is, however, unfortunate to say that even though this is such a life destroying cancer, and we need to do soooooo much more research, it only receives 1% of national cancer research funding. This NEEDS to change!
  4. I want to raise as much money as possible for brain tumour research charities, in the hope that this may help, not only my prognosis, but other people’s, and, so that in the future, other people do not have to experience this journey at all.

Who was/Who is/ Who will be Anna Swabey?

In this first post I would like to introduce myself a bit further… Who I was; who I am now; and who I want to be in the future.

Who I was:

  • Up until January 9th 2015, I was living a completely ‘normal’ life (although, if we are being honest, I don’t think anybody would have ever of described me as ‘normal’!)
  • 48ba208c971eda37c2e8b8e91e3287dfI studied Languages and European studies at the University of Portsmouth, and was delighted to graduate with a First Class Honours degree in 2013.
  • I have always been a very active person, and have a particular love for netball. My fondest memories from University involve the amazing times I shared with the girls from the University Netball Team.55f6baf1a555a3653db04ccbda1954be
  • Not only have I enjoyed playing sports, I am a keen spectator also. I am a MASSIVE Rugby Union fan, and had a season ticket for Leicester tigers since I was 8 years old. Living down in Portsmouth made it more difficult to get to matches, however the 3 hour drive was always worth it! My parents and I have travelled Europe supporting our team also. My football team is Stoke City, so all in all, when it comes to sport, I am a bit of a lad!
  • 10708f5c812d344dc0add3e16d6d7675That isn’t to say however that I am not a girly girl when it comes to fashion, make up, taking “selfies” etc….as I most definitely am!e7da2db8e2f1e5d32c4d18a2f5c128ba
  • I was a very sociable person, a bit of a chatterbox and friends often compared me to my comic idol, Miranda – tall, a bit clumsy, and always getting myself into awkward social situations!
  • I have always been very family orientated. I am very close to my parents, my sister, my brother, my niece and my four nephews. The only difficulty being, that as I chose to go to University in Portsmouth, the majority of my family live up in the North East of England.a85403fdf8def850e65d5867d543a62b
  • I have always been a big kid at heart, and I am obsessed with Disney. My Mum, Sister, my niece and two of my nephews and I went to Disneyland, Florida for two weeks last summer – WOW!

423520b840b429df7ef9d37c733b74d9      32fcfc5cadd8dcfc37627ba10c5aa271     3f1610f8162105374025f6819c25cadf      f0f58706ae066fe60f84101482bd8b0e

  • I was always very ambitious, I always wanted to be successful, and I was determined I was going to have an amazing career. Throughout my life, I have been a perfectionist, never settled for being just average.

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  • Although leading a very, as I said, ‘normal’ life, the only thing looking back that could have had any possible significance to my current situation was when I was 14 years old. I started suffering from severe shooting pains/headaches in varying locations in my head. These pains would only last for about 15-30 seconds and then progress into a throbbing headache. As these became more regular, I went to the doctors and ended up having an MRI scan. This scan showed a tiny lesion/ shadow on my brain, however it was that small, that nothing more was done about it and these pains/headaches were put down to stress.
  • On the 9th January 2015 I had a seizure at home (gutted because I was getting ready to go to the pub!) and I was taken into hospital via an ambulance. When I was in hospital I suffered a further two seizures, I had a CT scan and an MRI scan over the weekend and this was when my life changed forever…

Who I am now:

  • I’m still Anna Louise Swabey, i’m still 23 years old, and I still have exactly the same passions and ambition as detailed above. I am still exactly the same person, however, unfortunately, after receiving my biopsy results on February 3rd 2015, I have been diagnosed with a Grade 3 Glioma, Anaplastic Astrocytoma Brain Tumour.
  • Due to the intrinsic nature of my brain tumour I was told from day one that the tumour is unfortunately inoperable, so I was just about coming to grips with the fact I would be living with it forever, regardless of what treatment could be offered. On receiving my biopsy results that day however, I was then told that it is a particularly aggressive type of tumour and also terminal, and I was given a time scale of months to a maximum of 3 years to live. No words can describe how hearing that news felt, however I will be writing a post to at least try and express my emotions that day and onwards regarding the prognosis.
  • I am very lucky to have an extremely supportive family and set of friends around me and I am now living with my family in the North East after having to leave my life in Portsmouth. Again taking the positives out this horrific situation, I am loving being able to see them every day, even though it is under these circumstances.
  • I have always been a ‘tough cookie’ and I am trying to remain as strong and positive as possible, but I certainly wouldn’t be in this positive frame of mind without the love of my nearest and dearest. It is true what they say, it is at times like these you realise how blessed you really are!
  • Now I am ready to give ‘Trev the tumour’ – yes that’s right we have named the bugger- a real good fight!
  • I have been banned from driving because of my seizures.
  • I am signed off sick from work and I am awaiting news of when my treatment can start.

Who I want to be:

  • I want to defy my prognosis, I WILL live till I am old, I WILL get married and I WILL have children and I WILL have the life I have always dreamt of! But, I am by no means naive, and I understand it’s going to be very tough and some compromises will no doubt have to be made.
  • I want to make a difference in the world and leave a mark. Now this issue is so close to my heart, I want to raise awareness about brain tumours and the devastating affects they can have on people’s lives.
  • I want to raise lots of money for brain tumour research charities to ensure that, in the future, nobody has to experience this awful disease and many more treatments are readily available and we can find a cure to save my life and many others alike.
  • I am hoping that this blog will be a good start!

Thank you for taking the time to read what I hope will be the start of many posts to come 🙂