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 30: SUPER SARAH!

Now I know I have just posted about the Paris Marathon Mission, however, I truly felt as though this woman deserved a whole post of her own. I simply have to tell you about Sarah Hargreaves…

My Mum used to work with Sarah at York College, a fair few years ago now, but I had never had the pleasure of meeting her myself.

I first came across Sarah shortly after my diagnosis. She contacted me asking if she could run the London Marathon 2015 in aid of BTRC; I, of course, snapped her hand off, and was left dumbfounded how someone who I hadn’t even met would want to do something so kind. I quickly learnt of Sarah’s generous, caring and loving character. In her own words:

I know some amazing people who are brilliant runners.  Some can run a marathon in less than 3 hours; some can run three marathons in three days; some can do an ironman.  Me….well, I’m just a bit of an old bird who happens to like running.  It doesn’t come easy to me.  I have to work very, very hard at it.

When I was at school, I hated cross country but was OK at athletics…but then I discovered smoking, drinking and boys (not necessarily in that order) and any chance of taking up running was long gone.

It took a few more years for me to take it up….and, at the age of 42, I finally kicked the habit (smoking, not men) and was challenged to do the Great North Run by some workmates and raise money for Cancer Research at the same time.

I stopped smoking and started running the same day.

It was a truly awful day.

I managed around half a mile, running behind my friends, calling them as many bad names as I could think of.  When I stopped I was purple.  I felt wretched…but I stuck at it.  I built up my mileage gradually and, a few months later I completed the Great North Run in 2:10 in memory of my brother Simon, who died of cancer in 1999. I was very, very proud.

I came to absolutely love running and from there, built up my mileage to do marathons, of which I’ve now done seven (I think).  It’s not easy.  In fact, it’s bloody hard work.  I have to train hard; very hard.  But I love doing them and continue to fundraise in memory of my lovely brother.

Then, one day last year, when I was at work, I heard about some people fundraising for the Brain Tumour Research Campaign for a woman called Anna…the daughter of a friend, Linda Swabey, who worked at York College a few years before.  I found out that Anna, at the age of 23, had been diagnosed with a terminal brain tumour and, for whatever reason, her story just grabbed me.  It grabbed me so much that I found out more about her charity…and discovered that brain tumours are the biggest cancer killers of people under the age of 40, but receive less than 1% of cancer research spending in the UK. So I decided that I wanted to do my bit to raise more funds for the BTRC and their amazing work in trying to combat this terrible killer.”

 

So yes, this amazing woman contacted me and ran the London Marathon in aid of BTRC after hearing of my story; how kind! Not only that, but she raised a hell of a lot of money in the process also.

Sarah London

We kept in touch and Mum and I kept saying how we would love to head down to York and visit her and many other of my Mum’s former colleagues, however, operations, radiotherapy and chemotherapy seemed to take over our lives.

I was then very cheeky and contacted Sarah about running the Paris Marathon with me, and explained how I was keen to get a whole team together, and she jumped at the chance! Still never having met this lady, I, again was left shocked and very humbled.

This is where I began to learn that Sarah is not just caring, generous and loving, SHE IS AN ABSOLUTE NUTTER!

She contacted me to tell me that she knew she could run a marathon, and really wanted to challenge herself. Her crazy plans then began to fall into place:

April 3rd – Run the Paris Marathon

April 4th – Hop on a bike and begin the 277 mile cycle to Rotterdam

April 10th – Run the Rotterdam Marathon

 

As Sarah has called it “Two marathons and a bit of a bike ride” , or, alternatively, “ 3 Countries, 2 Marathons, 1 Old Bird”!!!!

I couldn’t believe what she was proposing! All I knew is that when I met her, I was going to give her the biggest hug humanly possible! I couldn’t wait!

When that moment came emotion consumed me, I had tears in my eyes and felt so happy to finally meet and talk in person. I don’t think any member of the team could quite get our heads around the challenge that lay ahead of Sarah and we were all in awe of her commitment to fundraising, in memory of Simon (pictured below), and for me and BTRC.

Simon

 

Paris Marathon completed in a very respectable time of 4hours 50mins, we met afterwards to celebrate the first success of her long journey. We hugged/cried goodbye and we all wished her well for her remaining two legs of her challenge. The morning after running 26.2 miles, Sarah, joined by her brother Andy, hopped on their bikes, and the support car driven by husband Chris. They casually cycled 70 miles!!!!!!

They arrived in Rotterdam on Friday, after having cycled nearer to 300 miles. This gave Sarah only one full day of rest before the final leg of her challenge!

We have all been following her progress intently on social media, and we were all hoping she would be able to complete the Rotterdam Marathon on Sunday and, more importantly, finish unscathed.

I was over the moon when I received a call from her telling me that SHE DID IT!! And, not only that, she only went and bloomin’ ran the Rotterdam Marathon 30 minutes faster than Paris! 4 hours 21 minutes!

Sarah Rotterdam Marathon

CHALLENGE COMPLETE!

Sarah has raised an absolutely UNBELIEVABLE amount of money for BTRC, and the total is still rising. Her total so far is:

£4,605.80

If you do feel so inclined, Sarah’s fundraising hasn’t stopped yet and it would be so amazing if we could see her personal target hit that £5,000 mark! Her Just Giving page can be found here.

Sarah two medals

 

Additionally, if any of you live in the York area, Sarah is hosting a night of fundraising for varying cancer charities, including BTRC. This event is taking place on Saturday 16th April commencing at 8pm, The Basement, City Screen, York. It is a night of live music and Sarah asks you to join her in celebrating her marathon successes and to raise even more money! Sounds like fun to me, get your dancing shoes on! Tickets can be purchased from the City Screen Box Office –http://www.thebasementyork.co.uk/#!boxsmash/ck1p

Sarah Charity Event.jpg

 

All that is left to be said, is a HUGEEEEE congratulations to Sarah! We are all so proud of you and your achievements! And I am sure Simon is looking down on you filled with even more pride! Cannot wait to see you soon – lunch will definitely be on me!!

POST 29: ALLEZ, ALLEZ ANNA’S ARMY!!!

12 runners + 32 supporters + 1 city + 1 marathon + 1 charity = ONE AMAZING WEEKEND!

I simply have to fill you all in on our trip to Paris. Well, to be totally frank, it was more than just a trip, it was a mission! 12 incredibly brave (crazy!) people, some of whom I hadn’t even had the pleasure of meeting, some I hadn’t seen in years, chose to run the Paris Marathon in aid of Brain Tumour Research Campaign. Not only did I have the absolute joy and pleasure of the company of these 12 people, but along with them came the support of 32 others!

This marathon mission, as you may have noticed, had been in the planning for a long time. I had initially intended to run it myself, but my poor health and lack of energy, unfortunately, soon put an end to that idea. I immersed myself in rallying the ‘troops’ and made sure I had a loud enough voice and a big enough banner to try and help the remaining runners around the gruelling 26.2 miles course.

my banner

I can admit this now, but as the marathon was approaching, I knew I made the right decision about pulling out. I was fully able to embrace all the excitement being reunited with friends and meeting new ones too, without the worry of whether I would actually be able to make it across that finish line without landing myself in a French hospital!

Thursday 31st March, Andy and I boarded our plane to Paris Charles De Gaulle. This in itself caused many a happy memory to come rushing back to me of my university year abroaduni days spent in the city! I felt like Anna of old being reunited with my friends from uni, and was so touched that so many people had made the effort to travel to this beautiful city to support the runners, myself and the amazing cause.

Before we left for Paris, runners were asked for suggestions for slogans to put on banners to encourage them during the marathon. I just wanted to clarify this so nobody reading this blog, or looking at the photos from the weekend think that I am some kind of dictator with her own ‘army’, or starting some kind of cult for that matter!!!! Their response was, “ALLEZ, ALLEZ ANNA’S ARMY!!”; and that was that! Thanks to Steve and those at Office Team a fantastic banner was designed (bar the photo of me! HAHA!) and was held high for all the runners to see!

IMG_5410 (1)

 

Ellie and her amazing family support had her own banner, “GO ELLIE!” and boy, did she go! Banners, BTRC t-shirts and jumpers on, it just was missing one thing….the runners HAD to be wearing something special, right?!

Here is where my amazing friends at the Rotary Club of Newton Aycliffe came to our rescue! I was invited to speak to the club back in September 2015, since then the Club has been nothing but overwhelmingly supportive of not only my cause, but of me personally. They made a generous donation to my fundraising mission, made me an Honorary Member (and the youngest!) of their Club, nominated me for a Rotary International in Great Britain and Ireland Young Citizen of the Year Award (which I went on to win!), and have constantly been there for me as friends. I thought I was pushing my luck and maybe being a bit cheeky when I sent an email around asking if any of the members might know of anyone/ any company that might be able to help make my teams’ running vests, however, yet again, the Club surpassed all my expectations and overwhelmingly told me that they would arrange and sponsor the vests for me! I sent them across the agreed design and that was that; these wonderful team vests were produced!

I really would like to take this opportunity to thank all at the Club for their continued support. I can tell you something, all 12 runners looked amazing in the vests and it made it much easier for the supporters to spot them in the crowds. Thank you doesn’t seem enough, but I really am so grateful, and I know the runners were too! I look forward to coming to see you all very soon to tell you all of this in person!

The night before the marathon approached and we all met up to dish out these vests, to dish out words of encouragements, and most importantly of all, to dish out food!!! It was such an amazing feeling knowing that all these people were here to run for me and BTRC. It was lovely to see everybody mingling and getting to know one another; it was simply great fun! Everyone was conscious of the early start that awaited everyone in the morning, and the teeny weeny matter of the little jog 12 people were attempting to complete as well! With that in mind, we went our separate ways and hit the hay! Goodness knows how the runners felt, I felt sick with nerves for them and was just hoping that each one of them completed the run without any injuries; my conscience was playing havoc with me!

*********

‘M Day’ arrived and we all met on the Champs Elysées ready for team photos. Amongst all of the tens of thousands of people this was hard to organise as you can imagine. Unfortunately, Tas and Lola didn’t make the photo call, but here is a selection for you to see.

 

This slideshow requires JavaScript.

 

The majority of us supporters then made our way to La Place de la Bastille, here we could cheer the runners on at mile 3 and then they would loop on the other side at mile 14. Banners held high and voices ready we saw the runners one by one pass each point. Although, we only managed to see Andy Davis at mile 14 as this superman was in the earlier start group. I couldn’t believe how easy they were all making it look, or, at least, I couldn’t believe what great actors/actresses they were!

Mile 14 was tough for some, and emotions were rife, but once we had seen the last of the 12 pass that mark, we headed for a spot near the finish. Supporters were able to bask in the glorious sunshine that shone over Paris that day, whether these were the perfect conditions for our runners however was a different question!

This slideshow requires JavaScript.

Some other groups of supporters dotted themselves around the course which was great as the runners were able to spot the banners, see the colours and hear the support all the way through.

We camped out just past the 26 mile marker. The end was in sight, they were almost there, they had almost run a marathon! As the Paris Marathon didn’t seem so strict as others I had watched previously, we were actually able to get the other side of the barriers; every time a member of ‘Anna’s Army’ headed towards us we were able to run along with them, some supporters even grabbing their hands and crossing the finish line together! The atmosphere was electric; emotions were still rife. I could not have been prouder of every single one of the team. The physical and mental strength that day must have taken…hats off, or in my case let’s say “WIGS OFF” to you guys!

(Speaking of ‘wigs off’, please keep an eye out in the video at the end of this post that includes photos of the men all trying on my wig – including the French barman!)

 

I am delighted to say that all 12 crossed that finish line, some more battered than others. They all can say they completed the Paris Marathon 2016, and can wear their medal with pride!

Celebrations soon kicked into full swing and to a bar we headed! Never has a drink been more deserved for the 12 runners, or more needed for all the supporters who had been shouting at the top of their lungs all day! I looked around our huge group and felt so emotional and so honoured to know such amazingly selfless people, who would put their bodies on the line and take time out of their lives to support me and this cause.

post marathon celebrations

I cannot thank each and every one of you enough, including every single supporter. You have all given me so many great memories that I will cherish, and made me appreciate, even more, the life that I am lucky enough to lead at this moment in time.

Another particular thank you I must make in particular is to Andy Davis for taking the reins and being the mastermind behind this marathon mission. None of this would have happened without you, Andy, and, I know I say it a lot, but your support, and the support of your entire family, throughout these 15 months still leaves me in awe. I love you all very much.

Davis Family

A final thank you HAS to go to every single person who donated to any of the Just Giving Pages or Sponsorship forms of my runners. Without you this weekend would have been for nothing. Instead, I am MORE than delighted to announce, that, to date (Just Giving pages are still open…) this Paris Marathon Mission alone, has raised a WHOPPING….

£16,961.66

…which sounds a lot like £17,000 to me!

The difference this money will make to BTRC is so exciting.

 

I am now calling my team ‘ANNA’S ANGELS’ – YOU ARE ALL INCREDIBLE

Andy, Bex, Sam, Edd, Nick, Sarah, Ellie, Polly, Kayleigh, Tessa, Lola and Tas, please take a bow!

 

Now, please take me back to Paris, I have been on a wedding dress diet since my return and really could do with some more crepes, croissants, pain au chocolats……..

 

I will leave you with this video that left me in floods of tears the other night, Andy Davis is proving to be a dab hand at these now:

 

 

 

 

POST 25: IS IT TOO LATE NOW TO SAY ‘desolé’ ?!

It is with such a heavy heart that I have to write this post. I have some disappointing news, news of which took a lot of deliberation and, indeed, tears.

Last week my parents held, what I can only describe as, an intervention with regards to my Paris Marathon Mission. We came to an agreement that I could be risking a stay in a French hospital if I attempt to run the marathon myself.

Unfortunately, I simply haven’t had enough energy to do the amount of training required to ensure I will be taking on this challenge in the safest way possible, as advised by my consultant. I was told I should only consider this marathon if I completed steady, progressive training, and truth be told, I get tired even from showering.

I considered walking; but even this option was quickly ruled out. 26.2 miles is hardly a stroll in the park or a walk with Enid!

Dog walking

My parents even highlighted that due to me still being on chemo, thus my immune system is a lot weaker, if I were to get blisters (which would be inevitable) and these got infected, the risk is high for me.

My parents told me the prospect of me powering on through and attempting to do this really scared them; it was hard to take, but the sensible decision really was obvious.

 

I feel as though I am letting so many people down, including myself, and I would like to apologise for agreeing to do it in the first place – I think I am kind of in denial over how tired and, more to the point, how ill I am in terms of the treatments I am having to endure.

Those who know me well will realise it has taken a lot for me to give into this; I hate to be defeated, but at the end of the day my health needs to come first.

The imminence of the marathon and my clear lack of preparation was obviously getting to me more than I realised, in my subconscious perhaps? Once we had reached the decision it literally felt as though a massive weight had been lifted off my shoulders.

 

I informed all of my team separately on the day I made my mind up, and their support and understanding has been incredible. Incredible, just like them! My team are still busy training and getting not only physically but mentally prepared for April 3rd.

I am delighted that I will now be there as chief supporter…banners and all! I cannot express how much it means to me that all these people are putting their bodies through such a feat to help me and my cause!

 

So I extend my apologies (Je suis desolée) out to all of you lovely lot as well, and plead for you to still back the rest of my team! All money goes to the amazing cause of BTRC; all money goes towards finding a cure!

 

ALLEZ, ALLEZ, ALLEZ!!!

 

P.S Sorry for the Bieber reference in the title of this post too – another thing that is hard to admit is that I think I’m a bit of a Belieber now! AHHHHH!!! monkey

 

POST 19: LIFE WITH A BRAIN TUMOUR PART II

 

To wrap up 2015, and the mad year I have had, I want to briefly replicate the first post I wrote at the beginning of last year (where did that time go?!). I want to give you an insight into the updated version; who I was, who I am, who I will be.

Anna Swabey

Who I was:

  • I was a 23 year old girl, dealt the worst of hands; told that I had roughly 3 years to live.post op
  • I didn’t know where to turn, what to say, what to do.
  • I had no idea why cancer had chosen me; a young, fit, healthy girl?!
  • I was heartbroken – not set to ever marry or have children; not set to live my dreams.
  • I was trying to hold it all together for my family.
  • I was determined to live; I had to fight.
  • I had two brain operations.Mask 1
  • I was sick, exhausted, and experiencing gruelling treatment.
  • I needed a focus; I had to help others, and I needed to fundraise in order to help find more treatments and, ultimately, a cure.

 

Who I am now:

  • I am Anna Swabey, a 24 year old woman, campaigning to obtain more funding for brain tumour research.
  • I am engaged to be married to my dream man; a mummy to a gorgeous puppy.
  • Together, since March, we have raised almost £37,000 for Brain Tumour Research Campaign.
  • I have attended the Houses of Parliament to share my experiences with the Petitions Committee.
  • I have met and spoken to the most incredibly inspiring young people, experiencing a similar, if not identical, illness.
  • I am still undergoing chemotherapy treatment; still determined to fight Trev.
  • I am training to run the Paris marathon.
  • I am in awe that I have over 86,000 views of my blog!

 

Who I want to be:

  • I want to be alive for many more years to come.
  • I want to be a wife.
  • I want to raise £100,000 for BTRC.
  • I want to continue to share my journey, in the hope of making a difference to people and families who are yet to be dealt the blow we have.
  • I want to remain tough and keep fighting.
  • I want to complete the Paris Marathon.
  • I want to keep positive, keep smiling, and keep being ME (i.e. a bit of a nutter 😛 ) !

 

I am determined that 2016 will be a good year for my entire family and I. I can’t wait to see what this year holds for my new little family unit; Anna, Andrew and Enid. I can’t wait to see, with your help, how much of a difference we can make to brain tumour research and to patients lives, just like mine.

I thank you all for supporting me throughout 2015, and I hope you continue to follow my progress and campaigning in 2016.

Finally, I wish you all….

A VERY HAPPY NEW YEAR!!!

 

 

 

POST 16 : “THE BUSY BEE HAS NO TIME FOR SORROW”

On completion of my fifth round of chemo (almost half way there!!), I thought I would fill you in on all my recent moans and groans, antics and updates…

First, let’s tackle the nasty stuff. Chemo has slowly become slightly easier; knackering, but, touch wood, my anti sickness medication seems to be doing the trick! (I literally am touching our kitchen table right now!!). My headaches have become slightly worse – but I am trying my hardest not to let them take over my life and to not overdo it with the pain killers! Although, I had a really bad one last night, as I got into bed. A tired, grouchy Anna, with a killer headache did not lead to good things…thankfully Andy was there for me to have a good old weep on his shoulder! (which incidentally made my headache worse – darn it!!!). The only other thing to report is that I have had quite bad pains in my diaphragm region and my back (rib area). To begin with they left me feeling very short of breath and panicky. As they continued, I became much calmer, as I knew it would stop and I could breathe!!! Having complained about the pain to my Mum monkeythough, she said it could be something as simple as trapped wind – embarrassing! I told my doctor and she suggested increasing the dosage of Omeprazole (a drug I take to protect my stomach, particularly from steroids). She thought it may be related to the extended period of time I have been on the steroids for – so I am rolling with that one and not wind! Haha!

On another note, my hair is slowly growing back. Albeit it is growing back practically BLACK and what Kammylooks to be CURLY – newest nicknames are microphone head or Kammy (Chris Kamara)! To be honest, I am loving the wig life (words I never thought I would type!). I get ready soooooo much quicker now and my hair always looks “did”. Who likes having real hair anyway?!

In terms of the other side of my life, living…I am happy to say I have been doing a lot of that and have been a busy lil’ bee! And I can’t just tell you guys about the horrible stuff, right?!

So, rugby mad that I am, I was rather chuffed to be off work sick and be able watch almost every single match during the World Cup (every cloud…). What made me even happier was being able to attend not one, not two, but THREE matches! I hope this doesn’t put some of my readers off – but I am well and truly a Welsh supporter, as a consequence of my Dad’s upbringing. England vs. Wales at Twickenham; we were sat Andy (England shirt), me (Wales shirt), Mum (England shirt), Dad (Wales shirt). And for those of you who don’t know….WALES WON!!!!!!! I had such a brilliant day at Twickers!

Twickers

Next stop, Millenium Stadium, Cardiff for Wales vs. Fiji; Father and daughter trip to Cardiff – bloomin’ marvellous; another victory!

Me and Dad rugby

Wales were through to the Quarter Finals WOOOOOOOOO! I simply had to get tickets! Twickenham; Dad and I; they may not have won, but the boys did us proud! Rugby outburst complete (well, not for long – back to Leicester Tigers this Friday!)

What else has been going on? – Jill and Alan, Andy’s parents organised a charity night that was thoroughly enjoyed by all. I loved seeing some familiar faces and meeting many, many new ones too. A special thank you for a fab night and to everyone who came out for it, over £700 was raised for BTRC!

I was also invited to attend the local Rotary Club meeting as their guest speaker. I spoke of my “journey” and my aims. I went in quite ignorant really to how these organisations work and, I have to admit, I was quite nervous. My goodness did those nerves fly away quickly! Everyone was SO lovely! I shared my experiences and enjoyed delightful company. Since my attendance, I have been contacted to tell me that they have decided to donate to BTRC as they were so moved by my speech – ever so grateful!!!

Next on my list must be a puppy update I reckon – she is as beautiful as ever, just slowly growing longer and longer legs! She definitely seems to have calmed down a lot and is enjoying more cuddle time now which I am LOVING!

Enid 16Enid 162

Now, I feel I have saved the most important and encouraging news to tell you until last.

People who follow my updates on Facebook too, have hopefully already seen the e petition I shared a while ago, calling for more funding to be given to brain tumour research (still accessible to sign here, which I plead with you to add your names to – takes two tics).

As you can read using the link above, a lady called Maria Lester, who sadly lost her brother Stephen Realf to a brain tumour, aged just 26, set up an e petition in his memory to gain more funding into brain tumour research from the government. After reaching 10,000 signatures, the petition gained a response (can be read by clicking on the link), unfortunately, not the one we were looking for 😦 .

 

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. This link highlights why they decided to launch their first inquiry as a result of this petition.

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 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….my, the list goes on! And since being diagnosed, I have unfortunately come across and met young and older people in the exact same situation; and worrying 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 (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. 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; in my eyes, 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 life has changed forever, the only other way I want other peoples life to change is that there will be a new found hope; different treatments, and ultimately, the best ‘C’ word I will ever have heard – A CURE.”

 

 

Since then, the Petitions Committee have invited 20 patients to a roundtable discussion at Westminster. I am delighted to say that I am one of those people.

Next Tuesday, 17th November, I will be heading to the Houses of Parliament to share my experiences with the MPs on the Committee. 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 a chance to be a part of that.

I was on Metro radio again today talking about it, and will be again around the time of my trip to Parliament – all fantastic awareness that has left me feeling more positive! Here is the link to the news item on their website.

metro radio

Oh and on a happy, lovey dovey, personal note: Andy and I are moving in together! I will get a housewarming arranged ASAP and you are all invited 😛

gorgeous andy

POST 12: WHERE TO GO FROM HERE…?

Hello!

I wrote this part of my post quite a while ago now, but never got round to checking it and posting it, but here you go…

(Written roughly w/c 29th June 2015)

Well, my break from treatment has flown. And I have had many of you asking if I am okay as I have been rather quiet since finishing chemo/radiotherapy on June 12th

Truth is, I have struggled the past few weeks, and I want to try and be as honest as possible with you all, without being too much of a “negative Nancy”, as my mood has changed over the past couple of days or so and for my own sake I would like to keep steering in this more positive direction. And I am really late – I should be packing for my trip down south right now, so I won’t keep you for long. (That is now a lie – apologies!!)

I have had, like the doctor did mention could happen, severe side effects in terms of fatigue since completing treatment. I have found it hard to conjure up the motivation to shower, get ready etc. let alone go out. I have then found myself in a vicious circle; the less I do, the more tired I become; the less I do, the more I think; the more I think, the more negative thoughts that enter my brain.

The main thought that has been bugging me (in all honesty, scaring) me the most, has been that we are in JULY! It has been over seven months since I was taken in to hospital now. As much as I like to remain positive and hope that I will live a HELL OF A LOT longer than the average 3 year diagnosis, if we do take this 3 year figure – I have already fought through 7 months out of 36 months already. 7 months, gone, just like that!

Other times, I have been worrying about my scan that is scheduled for Tuesday. What if the tumour has grown?! I have been trying to play it through in my mind of how I will deal with the news if that is what I will be told; but nothing can prepare you for that. I try to remind myself of a previous blog post I wrote, when I spoke about how a session at the Maggie’s Centre taught me to deal with uncertainty and how not to try to worry about things that are totally out of your control; but I am most definitely NOT a pro at this yet! So, I sit here, begging for the best case scenario; I want to hear the word STABLE. I want to be stable. We always knew that Trev was not very receptive to radiotherapy treatment, so I am not being ridiculous thinking that I will be told it has shrunk or anything; just stable. No growth please!!!!!

Tuesday is also when I will begin my next load of chemotherapy; Temozolomide again, but this time on double dosage, for 5 days, and then off for the remainder of that 4 week period. Depending on my reaction to it, this could last for up to 12 months. A year; blehhhh! I am, again, expecting the worst; if you remember, I was very sick on my first day of chemo in the back end of April, thus, on double the dosage, I reckon it may be quite tough.

I have basically just felt a bit POOP! I have piled on weight, I have no hair, I have minging skin (all may seem so little and trivial in the grand scheme of things I know), and being completely honest, I don’t think I have ever got my head around the fact that I have cancer (nope, I certainly haven’t, as it still feels odd typing it out).

I feel like I need to apologise that this post is probably a bit of a let down and not very “Anna-like”, but I think it is important that you know that even people who can come across really tough on the surface, and put on a smile and a brave face, can be just as weak and vulnerable as someone who cannot hide it as well. Most of the time, I find I put on the brave face to save my family from having to deal with an emotional wreck 24/7. But if these down weeks have taught me anything, it is probably that this is not a good action plan. I need to let them know exactly how I am feeling; and I want to let you know too. And I should not apologise for having such feelings.

In actual fact, I found this quote online the other day, probably when I was stalking someone I do not know on Instagram (as you do….right?!):

Never apologize for how you feel. No one can control how they feel. The sun doesn’t apologize for being the sun. The rain doesn’t say sorry for falling. Feelings just are.

On the flip side, I have been on the radio again, BBC Tees had me on Radiofor a full hour show which was fab. I have been amazed by the on going fundraising support and ideas from so many people; it really is humbling and I am so honoured people have taken this campaign to their hearts and are willing to help try to find a cure to save my life and so many others alike.

I need to remind myself, and inform you, that since deciding to start fundraising on behalf of Brain Tumour Research Campaign, only at the beginning of March 2015, and, with the help of all of you wonderful lot, the total we have raised cumulatively has now ticked over £27,000!

TWENTY SEVEN THOUSAND POUNDS!

This is when I get a “kick up my derriere” and realise that I am doing good! WE are doing good! No, actually we are doing better than good! £27,000 is INCREDIBLE!!!!!!!

change lives quote

I am blessed that no matter how I am feeling mentally, I always have the support of so many; family, boyfriend, loved ones, friends, adopted families, brain tumour buddies, and people who have come across my blog and have made the conscious decision to help me on my journey, most without even knowing me at all!

I will be sure to let you know how I get on this coming Tuesday, I will just apologise in advance if it is slightly delayed, as I will be starting on my chemo.

But this is it; Fresh start; Positive Anna. Speak soon!!!!

pick yourself up

Scan Results

My appointment was on July 14th 2015. It is now August 8th 2015. So I broke my promise to you all I am afraid.

Some of you who follow Inside My Head on Facebook also, may already have seen why this is the case. Please see below what I posted:

facebook post number 1facebook post number 2

Trev, the bastard, had grown 😦 .

POST 9: CINDERELLA DID GO TO THE BALL…

As promised…

As I have hammered into you all since I started writing my blog, Saturday May 2nd saw Lox of Love, my family’s business, and I, host Cinderella’s Charity Ball at Wynyard Hall. Seeing as I have been rabbitting on about it for a while, I thought it was only fair that I share the evening with you all.

The organisation of it all was, at times, quite traumatic. I was so desperate for it to be an enjoyable evening and raise a load of money for BTRC and I am a perfectionist, so was determined to make it MINT. Fortunately, all the stress seemed 100% worth it.

To set the scene; we chose the beautiful venue of Wynyard Hall, so the wow factor was there right away on arrival for our ball guests. The red carpet was laid at the front entrance, and stood either side of this carpet were our beautiful Cinderella and Fairy Godmother, thanks to Emma Enchanted.Wynyardchandelier

blog cinderella and me

On entering the building, guests were greeted with a glass of bubbly and the Image captured bytalented Georgia Fletcher tinkling the keys of the piano in the main hall. We then made our way into the conservatory where all our amazing raffle prizes and auction lots were on display. With the help of my incredible family, raffle tickets were being sold left, right and centre; this excited me a lot. We had all Image captured by spent a lot of time ensuring the quality of the prizes; we were more than aware, the better the prizes, the more money we could raise for BTRC. I was busy trying to say hello to everyone arriving; it was such a joy to see Image captured bymy family, friends from many different walks of my life, and people that I had not even met before! To know they were all there to support me in my fundraising and to support BTRC was really humbling.

A highlight of the evening, I must say, was all thanks to Ryan Metcalfe. Ryan decided to get in touch with us after hearing about our plans, and he offered his services free of charge. These services turned out to be some of the most mind boggling sleight of hand magic! A huge fan of Dynamo myself, I always Image captured byfear for other magicians that they have so much to live up to, but my goodness, Ryan smashed it! All I could hear were gasps and laughter (and swear words) coming from our guests. From ludicrous card tricks, to the sheer impossible, Ryan truly did make our evening MAGICAL!  All down to his incredible generosity; Ryan, I thank you!

As dinner was ready to be served, we made our way into the ballroom; this is where we would be spending the remainder of ourBall tables evening. We ploughed through wine, our starter, more wine, our main course, more wine, our desert, a Image captured bycheeky glass slipper cocktail. I was beginning to get nervous when the cheesecake was served…a few mouthfuls in, and that was my cue to get up on stage and make my speech! EEEEEEEK! There was so much I wanted and simply needed to say! A majority of which was a heap load of thank you’s. As detailed on the evening, I could not stand up and thank absolutely everybody who has speechnot only supported me since my diagnosis, but had made a particular effort with helping me organise this ball, but I tried my best to acknowledge those present that evening. I think nerves slightly got the better of me and I possibly missed out a few; for this reason I feel like the best thing to say on this blog post is one big THANK YOU! That thank you goes out anyone who helped the event happen, all I need to say I suppose, is that you really do know who you are. To each and every one of you, I am so grateful for all your support; it would not have happened without you.

I am hoping (and I have already sent out a plea on facebook) that someone who attended the ball may have recorded my speech; I am sure I saw many camera phones up during my rambling. If you have it recorded, please can you get in touch with me?

Following my speech, I was more than delighted to introduce the room to Wendy Fulcher, the founder of BTRC. I was honoured to have her join us for the evening and to then join me on stage to make her own speech, informing everyone just how incredible this charity is. I then went back to my table, I wish I was informed of what was to come…a load of tears!

Wendy began her speech by reading out an email sent to her that morning by my consultant, Kevin O’Neill, and I feel I simply have to share this with you all:

I am sorry I cannot be at the Cinderella Ball but I couldn’t pass up the opportunity of at least sending a few words of thanks and commendation.

When I first met Anna I saw a young beautiful girl who had been hit from the side by this frightening diagnosis. She had everything to live for but was lost with very few options. I was instantly drawn to her energy and determination to fight this and do something positive and I think bringing together tonight’s Ball is a reflection of that. This is something I can identify and as her treating neurosurgeon we are now both in this battle together. I offered Anna a different path. One with options because she needed that, she deserved it and it was possible through our endeavours in research. There is always something to be done whether large or small to improve the outcome and overcome this condition. Some of that is at our fingertips now and some is in the pipeline for the future which leads to our fundamental goal in research.  To fight this disease until we have a cure. I refer to this as our battle against brain tumours which is one reason why we named it a campaign. So thank you Anna for your efforts and support, but in particular your bravery and determination. Lastly a big thank you to all here tonight for attending and offering your support and for joining this campaign.

Enjoy your evening

Kevin O’Neill

Consultant Neurosurgeon Head of Neurosurgery Imperial College Healthcare NHS Trust

I was so happy to hear Kevin’s words and I know he would have loved to have been at the ball also.

It was great for Wendy to share with us all, all about the charity and what it means to the charity to have our support. Within such a short space of time, less than 3 months, with the help of family, friends, and new friends, Wendy announced we have managed to raise over £12,000 already! (excluding money raised from the evening itself! ).

It was an honour to have Wendy join us and an honour listening to her speak so passionately about this campaign. I very much feel like I have made the right decision for me, in choosing BTRC as my chosen charity. It is so close to my heart and to be able to have such a great relationship with Wendy and Kevin, makes it feel even more right.

Tears wiped, it was time to hand over to my Dad and Sister; Auction and raffle time! As mentioned we were so fortunate that prizes were incredible thanks to more than generous donations! I was so overwhelmed by everyone’s involvement in the auction bidding! Auction lots ranged from a villa holiday in Spain, to 4 VIP Foo Fighters tickets, signed Artic Monkey’s and Noel Gallaghers High Flying Birds vinyl, to football memorabilia, to the most beautiful Cinderella Carriage Cake! Cinderella cakeMoney was flying in and in the auction alone we raised over £3000!!!! On a side note, some of that was spent on a present for me! Andy, my boyfriend, bought me the signed Miranda DVD!!!!!! EEEEEEEEP! IDOL ALERT…I was so chuffed, but he did get a telling off as well 😛 .

A huge shout out to my nephew, Edison, and my niece, Amber for having the highest raffle ticket sales! It was phenomenal, we managed to raise over £1000 in raffle tickets! To be fair, the top prize was a villa holiday in Florida!!! Along with a whole range of hamper prizes, Kindle Fire, hotel stays, afternoon tea for 4 at Wynyard, golf days the list really did go on and on….

Then it was PARTY TIME!!!!!! The part I had certainly been waiting for…I was desperate to get my dance on…and boy we all did! A highlight for me was oops upside your headeveryone dancing along to Oops Upside Your Head! – This was one of the inappropriate song choices for the evening! I walked on stage to Kylie Minogue Can’t Get you out of my Head, and then challenged everyone to beat my inappropriate song choice. Winner was Clever Trevor! (even though I do not think Trev is clever…or at least he won’t be clever soon!!!!!)

Midnight struck, and to mark the special moment in Cinderella’s story, instead of her having to leave, we chose to have a balloon drop instead! I chose to drop the balloons to the song Klingande by Jubel; including the appropriate lyrics “SAVE ME”.

balloon drop

Unfortunately 1am came around far too quickly for my liking! But everyone certainly seemed to have a great evening!Image captured by

On a personal level, it was amazing having so many loved ones there but also people I had not had the joy of meeting until the evening. It really made me realise how blessed I am to have SO many people supporting the Brain Tumour Research Campaign, and the campaign to help prolong my life!

It now feels extremely weird without having the ball to think about, but I am already on to my next fundraising mission; and it’s a BIG one, I tell you! I will reveal all as soon as I can.

All that I will finish with is another THANK YOU! I am one very lucky girl, who, with your help, raised a staggering £4934.70 that evening!!!!! 🙂 🙂 🙂

Me mum and dad

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!