Remission - Running Forever!

While I was in hospital going through the extremely brutal Leukaemia treatment I spent a lot of time fantasising about how great my life would be once my body went into remission!  Well surprisingly I am still waiting for that rush of euphoria I dreamed of!  Maybe a few years down the line, five years, I am lead to believe, it will finally hit me!  I will feel safe and trust in my own body not to randomly start the destructive formation of Acute Myeloid Leukaemia!

My consultant cannot enlighten me as to why I have Leukaemia nor can he reassure me that I won't relapse!  While I was enduring my treatment none of this crossed my mind, I just focused on each dreadful moment.

Want to know how it feels?  It's like constantly running from an assassin, never quite feeling safe, always looking over your shoulder waiting for the bullet to hit!  At least now I am aware I have Leukaemia stalking me, waiting in the shadows, never far from my thoughts!

Bloodwise Candle & renewing an old friendships

One of the things I have been asked many times about how my Leukaemia battle has changed me and one of the main things is deciding to 'be positive, be happy & go for it'.  This is why I decided to go ahead with the idea of creating products I love which will help in the fight to #BeatBloodCancer

A mutual friend of ours put Rachael and I back in touch via Facebook, yes Facebook can be a good thing!  We started private messaging about how we could use Rachael's candle making and my Leukaemia battle to create a 'Bloodwise Candle'.

We were at school together and lost touch once we left and started on very different life paths. Rachael has done lots of travelling and has recently moved back to our home town starting her business Hobo Soy Candles.  They are lovingly hand poured with a blend of premium fragrance and essential oils, ours is Orange and Bergamot.

Click here for more on the candles and how they are made and to order yours! http://www.hobosoycandles.co.uk/

At a local event debuting the Bloodwise Candle

It has been amazing being together again, reminiscing and trying to get our heads around how fast time has flown.  I sometimes smile and think how all those years ago we would never have guessed that we would be doing this many years later! We are now looking forward to taking our candle to lots of different events and spending more time together.

At Bloodwise Impact Day

Candles are available in tins or jars

The History of Leukaemia

During my recovery from AML have have been doing lots of research into Leukaemia so decided to write this post.  I've always loved researching and finding out the history behind something, although it is not something nice I still found it extremely interesting!  So for those of you who's also like to know please carry on reading!

From historical literature is appears that problems with a patient's blood leading to their death was known about long before the first published description of Leukaemia.  The first time this crops up is when French anatomist and surgeon Alfred-Armand Velpeau wrote about it in 1827.

• The name we now know it by was coined by the renowned German pathologist Rudolf Virchow in 1845, he was only in his 20's at the time!  He was a pioneer in the use of the light microscope in pathology and the first to describe abnormally high amounts of white blood cells in patients. Virchow named the condition Leukamie which he formed from two Greek words; Leukus - meaning white and Haima - meaning blood.  At the time he wasn't sure of the cause of the excess white blood cells so used purely descriptive words.  

Virchow

• Also in 1845, Edinburgh pathologist John Hughes Bennett was the first to diagnose Leukaemia and over the next 20 years Virchow and Bennett fought over what caused Leukaemia as they believed in different causes.  We now know that that Virchow was the one who was correct as he believed it started in the bone marrow.  Bennett used the term Leucocythemia to describe the condition of patients who had died from enlarged spleens and who had changes in 'colours and consistencies of their blood'. 

• About 10 years after Virchow's findings it was discovered by Franz Newman, while studying the bone marrow of a deceased patient, that it was an unusual colour and not red as it would normally be. This lead him to work out that it was a bone marrow problem causing the abnormality in the Leukaemia patient's blood.  In 1869 he first used the word 'Myeloid' from the Greek word Myelos - meaning - bone marrow as he'd recognised that white blood cells were made in the bone marrow.

• In 1879 Mosler first described the examination of bone marrow to diagnose Leukaemia. 

• Wilhelm Ebstein, in 1889, came up with the term Acute Leukaemia to differentiate between rapidly progressive, fatal forms and the more slow growing Chronic Leukaemias.

• In 1900's the Myeloblast (the malignant cell in AML) was characterised by Naegoli who divided Leukaemias into Myeloid and Lymphocytic.   In 1913 four types of Leukaemia were classified.

• The American Pediatric Pathologist Dr D Farber discovered the first effective Leukaemia treatment in the 1940's.  However, it still remained a largely fatal disease with all patients dying eventually.

• In 1958 the use of combination chemotherapy was pioneered  in the US and is still the mainstay of treatment.

• In 1960 it is discovered that the Philadelphia chromosome is linked to Leukaemia leading to the first ever targeting cancer treatment.

• In 1960 the blood cancer charity Bloodwise formerly known as Leukaemia and Lymphoma Research was formed by the Eastwood family who sadly lost their daughter Susan aged 6 to the disease.  Bloodwise are responsible for many advances in blood cancer treatment, in fact if their daughter had suffered her Leukaemia today she would most probably have survived as now 9 in 10 do whereas in 1960 it was 1 in 10.

• Finally in 1970 it was confirmed that some patients could be cured and by the 80's and 90's cure rates were significantly improving.

• In 1979 the first successful unrelated stem cell donor transplant took place for a patient with Leukaemia.  Sadly the patient passed away from recurrent Leukaemia two years later, but it proved these transplants were viable and as we now know these are now largely successful.

• In the late 1980's scientists find that exposure to the chemical benzene is associated to the increased risk of developing some Leukemias.

• AML was the first ever cancer genome to be fully sequenced in 2008 (Genome meaning a full set of chromosomes, the inheritable traits of a cell).

Since Dr Farber discovered the first viable Leukaemia treatment there has been huge advances in knowledge, understanding and treatment.  I will write another post about the treatment history of Leukaemia.

Hope you enjoyed with little 'snapshot' of the history of Leukaemia, I certainly enjoyed researching it!

Much Love....Butterfly x

Sources; wikepedia, Journal of Clinical Oncology, CancerProg.net, PubMed.gov, Bloodwise.org.uk,

This time last year...

This time last year....

I didn't know what Leukaemia was, have my very own consultant, Macmillan nurse or medical team discussing my future.

I didn't know how it felt to be really scared, lose my freedom or be unable to trust my own body.

I didn't know that a small gesture could mean so much or the power of one message, tweet or card.

I didn't know how it felt to be strong and brave but at the same time feel so totally lost and vulnerable.

I didn't know the true meaning of life or how much I was loved...

Much Love to you all and please stay by my side as my journey continues, keep those messages coming and keep me smiling!  - Butterfly in Remission xx

My Cancer Survivor Personalities!

I've finished my treatment and been out of hospital since September and my life has gone back to normal in a lot of ways but, I have realised that the 'old normal' no longer exists,  I am not the same person I was. I still need to grieve for the old me

Everyday I battle negative demons in my head who try to scare and discourage me from getting on with my life!  I am still very emotionally fragile and can't always cope with outside influences that make me feel low. I have to talk myself down from the edge twenty times a day, my mind often wanders to one of the terrible moments in the past and my uncertain future.  I've been through an extremely, multi layered, traumatic experience and have to live with absolute fear everyday.  Even writing this is making me feel utterly sick inside! Sometimes I want to scream to let it out but something always stops me, perhaps the worry that if I start I just won't be able to stop!!  I did scream and cry once, snot running from my nose, I was alone at the time!

To the outside world, with my make up on, my hair done and a smile on my face it's easy to make the mistake that I'm fine, have dealt with it all and have moved on!  But you see I've developed two personalities, the public one and the private one!  This started in hospital when I couldn't show anyone just how upset and scared I really was!  I only ever broke down a few times, many times I wanted to break but held it together.  When visitors came I never showed what was really going on inside, the total crippling fear that I felt.

I want to be happy, experience as much as I can and embrace life, I don't want negativity around me. I want to achieve lots of things and spend as much time as I can doing the things that make me happy! 

Cancer Survivor Pens Emotional Blog about deadly disease

My story is featured in this article, the link is below so please have a read!

Click Here!
Leukaemia survivor pens story about fighting deadly disease

I just don't get Twitter! Well take a look at #TwitterTips and you certainly will!

I have learned a lot about how Twitter works over the past couple of years and often get asked to help people with it.  So I decided to create a PDF document with everything I know to share with all you lovely people!!  Hope it helps you navigate the wonderful world of Twitter

Thanks ~~ Butterfly

Click Here!
Butterfly's Twitter Tips!

Race for Life - My home town pulling together

Just some of the 'Anna's Butterflies Team'

With my local Race for Life fast approaching I wanted to write about the phenomenal response to my diagnosis at the 2015 event.  As I look back now at all the Facebook statuses it makes me emotional and I feel so lucky to have had so much support.  I wanted to go up and kiss each and every person but unfortunately due to my extremely compromised immunity I had to keep my distance.  There was an incredible number of people taking part, the town has never seen anything like this before!  Literally everywhere I looked there were groups of people, chatting excitedly, wearing Anna's Butterflies t-shirts!  Everyone I have spoken to since thought the atmosphere was amazing and they were proud to be part of it.  it's one of those times where everyone pulled together to do something very special for their fellow human being.  

A team named 'Anna's Butterflies', because of my butterfly obsession, was created with a specially designed logo.  When I heard of this I was so surprised at the amount of people who wanted to take part because my Leukaemia fight.  Everytime family would come and visit me in hospital they would tell me of more and more people contacting them and signing up.  Lots of my friends took up running and are still running now and they are really looking forward to this year's event.  To see all those people of all ages and fitness levels doing their best and proudly wearing the Anna's Butterflies logo was humbling.  A lot of these people had never signed up before and their whole family took part too!

Everyone on Facebook changed their profile pictures to my butterfly logo and I remember seeing them all and it felt like we were all fighting this together, again I was so touched.

I love my logo!!

I was very weak as I had finished my second gruelling round of chemotherapy and was due back in hospital the next day for the third cycle.  So armed with a wheelchair (kindly leant me by a friend) and my trusty bottle of ice and Forti-juice (a prescribed calorie drink as I couldn't stomach anything else) I went along to spectate.  It was the first time I'd been out in public since my diagnosis so many people hadn't seen me and there were lots of kind words exchanged.

With the wheelchair and trusty bottle of 'jungle juice'

Chatting to Melvyn from BBC Radio Lincolnshire before the start

 

  

I waited near the end for my Mum and Sister as I'd decided to walk a short distance and over the finish line with them.  We walked over the line arm in arm with my daughter and niece; it was a very special moment for us as I had been told I was in remission and compared to the previous two months when I'd been gravely ill I was quite well.

I've been asked how it felt knowing that all of these men, women and children turned out to support the event because of what was happening to me.  I've tried to live by something my Mum has always said (shhh don't tell her I actually take her advice!) which is "be true to yourself".  I've always wanted to be a kind, helpful and good person so I guess this day was proof that I'd achieved that. I have since given it some thought and here are a few words; touching, emotional, heartwarming, moving, motivating, encouraging, humbling, amazing!

After crossing the line

My daughter and niece

What I find hard to get my head around is that I have taken part for several years now and had always found it emotional and inspiring but never imagined I would a cancer fighter myself.  And that when I take part in years to come it would be for myself to celebrate and for others, friends and family who have lost their cancer battle.

Me, my husband and daughter ready for
the Race for Life a year before

The Butterfly logo in progress

One of the kind gestures - my friend's Anna's Butterflies themed nails, instead of paying her the
nail technician asked my friend to donate the money.

A Friend's daughter

One of my daughter's class mates and his sister

Even my friend's baby had a t-shirt

If you don't know what to do for someone who is fighting cancer then this is one thing that will show how much you care.

To each and every one of you I would like to say a gigantic thank you from the bottom of my heart, words cannot express how much it meant to me.  With your love and support I never felt alone.  Mwah "Butterfly"

Some quotes from the Facebook statuses after the event;

"Can I just say it has been an absolute privilege...feeling bit flat right now but Anna you looked great today.  Here's hoping you'll run it with us next year as we celebrate your recovery, well done all xxx"

"What an amazing day, yes I broke my course record but that pales into insignificance when I see Anna and Vikki walking over the finishing line!!"

"Amazing Anna you are a true inspiration.  Was great to see so many there supporting you today.  Keep up that good fight!"

"I had a tear too, very proud of everyone there today...Louth has many wonderful people."

"Well done guys, truly amazing stuff, proud to have such inspirational, strong people to call my friends."