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 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 😦 .