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

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