My AML - Cytogenetics!

So you may think I am crazy and at times I did wonder why the hell I wanted to know so much about my very scary illness but, I needed to know the facts to help me process it all.

While I was in hospital having my treatment my husband kept telling me that I didn't realise how ill I was and what I have got.  At the time I thought 'yea I do, its Acute Myeloid Leukemia' but I didn't know exactly what that meant, cancer of the blood and at the time that's all I needed to know.  The treatment was so brutal that I couldn't think about anything else.  Once I had been out of hospital for around a month I started to feel curious.  Over the next few weeks I spent a lot of time researching on the internet and I learnt a hell of a lot.  I've always loved learning new things and in way I really enjoyed teaching myself about it but at times my heart would sink to my stomach when I read something particularly negative,

As part of my research I looked through all of my discharge summaries which did bring back all the trauma of it all as I re-visited it.  I noticed a couple of phrases which I had read about on the internet, NPM1 and FLT3.  These are genes that mutate in AML and from what I read if you have NPM1 you have a more positive prognosis and if you have FLT3 a much less favourable prognosis. Heamatology and oncology put patients into three categories, favourable risk, intermediate risk and poor depending the which genes are found in bone marrow aspirations.

When I saw my consultant last week I asked him about this and he confirmed that I did have the NPM1 gene but none of the FLT3!  I was so happy, this was such good news as it puts me in the favourable risk category.  Basically the genes that mutated in my bone marrow were the best of a bad bunch!  Strange thing to say when talking about cancer but if you are going to have cancer cells mutating these are the ones you want!! I am still at risk of relapse, but less risk than some other poor patients!  I've got to try to take this as a positive even though AML is still a very dangerous, scary disease that I am stuck with for the rest of my life!

Things I never thought I'd hear my 8yr old say!

So below I have listed some things my daughter has said that I never thought I'd hear her say at such a young age!

• Why did cancer come to you?
• What if I get cancer?
• Doesn't she know you've had cancer? (after someone I bumped into didn't mention it!)
• I don't want you to go away Mummy...bad things happen. (when I was arranging a trip away with friends).
• Are you alright mummy? (with panic in her voice whenever I cough or anything).
• I'm scared you're going to die.

The Kindness of Strangers!

Post coming soon!

Losing my Rapunzel Hair

So I'd always had long hair and had been obsessed with it being long (never long enough!) all my life!  I used to joke that it was because the fairy tale Rapunzel was my favourite story as a child!  I used to tell my daughter that I'd always wanted a daughter so that she too could have long hair.  I never thought in a million years that I would lose it all but....I did!  I remember thinking over the years that if I ever lost my hair I would be devastated and unable to cope!  However, it hasn't been as bad as I thought it would be but I do really miss my long hair and am definitely going to grow it long again!

This is me with my long hair!!

Me when I had darker hair!

As it all happened so quickly for me I didn't really have a lot of time to dwell on it and I was so ill that it was the least of my worries!

My husband and sister came up with the idea of getting a hairdresser friend to come over to the hospital to cut my hair into a bob so it wouldn't be so traumatic when it started to fall out.  I can't thank them enough for this as it really did make a difference.  The hairdresser actually platted my hair before she cut it so that I could keep it and again I thank her for this as I'm so glad she did!  I remember her styling it and I suddenly had to go back to my bed as I was so ill!  She was trying to make it look really nice.  I didn't have long to enjoy my new hairstyle but my sister took a couple of pictures!

My plaited hair that was cut off!

I remember talking to another patient and her telling me that her hair came out quite quickly and that her scalp became sore just before.  This conversation helped as it prepared me for what was to come. The day my scalp started to feel sore I knew what was coming!

Having my hair cut off and trying not to cry!

After this I became critically ill, I was extremely drowsy most of the time due to my treatment and morphine, etc so I wasn't aware of it coming out!  The first memory I have is of my mum and husband sitting me in the shower and washing my hair which had become really matted!  They then stood either side of me as I sat on the bed coming out the hair for well over an hour!  When they had finished there was a massive pile of hair next to me!  I didn't really look in the mirror after this and my sister-in-law brought me a wide headband to wear until the rest of it came out, his really helped. The next day my parents went out and brought me a couple of the chemo hats too.

I never really felt self conscious although I never took my hat off in the beginning, even at night!  As I was in hospital for such a long time I was with other patients with no hair so it felt normal!  We talked a lot about hair, wigs and how we coped which was a good thing about being in hospital with other cancer patients.  I didn't have to go out into the world very often but when I did I would get the 'sympathy look' from passers by.  I'd always made such an effort with my appearance and wanted to stop them and show them how I used to look! In fact when I did get the chance to show some of the nurses they were shocked!  When I looked at those pictures it felt like I was looking at an old friend I no longer knew!

I hid my bald head from my daughter for a while as I felt she'd been scared enough without having to see me looking so awful.  The first time she saw me without a hat was by accident and my husband saw her poor little face drop, but a heartbeat later she said 'It's ok mummy, I'm ok mummy', I didn't even have to ask she just knew what I needed to hear! So so brave of her...brings a tear to my eye writing this, she's only 8! 

When I was at home and someone called in unexpectedly my husband and daughter would run around finding a hat for me to put on!  How strange that this became part of our normal life!  It was a while before I was brave enough to even let close family see me without my hat on.  I may have been lucky with my friends and family but they reacted really well when they first saw me making me feel comfortable!  I do remember asking a friend, who was coming to see me with her young daughter if I should wear my hat as I didn't want to scare her! Actually her daughter was fine and calls me 'poorly Anna' now!

Since my hair has started growing back I've still found it hard to adjust but when you have been as ill as I have you have to tell yourself its only hair!  Small sacrifice to make for my life!

This is the most recent photo of me

In hospital after third cycle of chemotherapy

Thankful

Fatigue & Anxiety!

One of the many things I found hard was the overwhelming fatigue.  Very early on I met a lady who was a little younger than me and she said she found the fatigue was one of the worst things and now I know what she meant!

Partly due to the brutal treatment and partly due to all the time I spent laid in a hospital bed my body became extremely weak!  I would get out of breath really easily and start to panic, this lead to awful anxiety!  If I had to go anywhere I would have to work out if there would be places I could sit and rest if I needed to and make sure there would be a toilet nearby because of the colitis.  My anxiety got so out of control my consultant gave me medication to help control it. It was so crippling at times that I couldn't get off the settee to do anything incase my body let me down.  Even when I was sitting down my legs would shake uncontrollably!

I had to go up the stairs on my hands and knees and when I came down my husband would walk in front of me as I was so weak there was a danger I would fall!  I still get tired really easily and my legs don't have much strength in them, I'm scared to exercise but need to build up my muscle tone. I used to run and cycle so being weak is pretty depressing.

I remember sitting at home crying as I watched people walk past my house going about their day to day lives feeling so sorry for myself!  I had taken so much for granted in life but suddenly my freedom and independence had gone!  I just wanted to be able to do those boring normal things like pop to the shop or to a friends house!  Totally reliant on other people for the first time in my life, I'm usually the one in control, I had to let go and trust those around me.

You lose total confidence in your body and what its capable of as even the simplest things become impossible.  My mum made me go for a short walk once and I was a nervous wreak the whole time!  And just when I started to feel a little stronger I would be back in hospital for more chemotherapy weakening me yet again, like some kind of awful merry go round!  I had to be incredibly strong willed and keep pushing myself once I'd finished my treatment.  The trouble was that my mind was still fine and wanted my body to do things it just couldn't handle, every now and then I would break, get angry and cry!

A friend kindly lent me a wheelchair which meant I could get out a bit when I was between treatments, my daughter thought it was great fun pushing me in it!

Look Good Feel Better Workshop

This is something I had never heard of before I got Leukemia! Its a workshop run by a charity where you are given help and advice on how to look your best during cancer treatment.  Its like a pampering session, you are shown how to cleanse and tone, then how to apply make up.  Its great and the free make up and products you get are amazing!

I was told about this by the nurses and ward manager while on my second cycle of chemo.  They were so good and arranged that days chemo around the workshop so that I could attend!

At the workshop there were some people like me who were staying in hospital and some that were day patients.  Some had lost their hair, some wore hats, some didn't.  In fact it was a hot day and one of the ladies took hers off as she was too hot so all the others did too!!  This was my first experience of meeting other cancer patients from the outside world and how even though we were strangers we supported each other by being brave enough to take our hats off!!

It was lovely to have this pampering time as while you are going through treatment you are not able to do things like go to your local salon!  For me it was just nice to have a change of scene and break up the monotony of long stays in hospital!

They show you how to do make up and most importantly how to add eyebrows if you have lost yours, I found this really helpful as it gave me more confidence.

The products you get to use are premium for example, Clinique, Estee Lauder, Lancome, No7, you also get a lovely bottle of perfume!

This is a great charity and here is the link to their website!
http://www.lookgoodfeelbetter.co.uk/

BOOM!!!! Its Leukaemia!!!

Back in April this year I had been feeling ill with flu like symptoms and after having a week off work, spending most of it in bed, on the next Monday I decided to go to the doctors.  I'm never ill, well the old me never was! I knew something wasn't right but thought I'd got a virus or something!  I saw the nurse practitioner after discussing my symptoms she gave me antibiotics suggesting an upper urinary tract infection.  I was happy with that as a lot of my symptoms fitted it!  She also asked me to go and have my bloods done just to see if anything would show up.   I nearly didn't go as I didn't think I had anything serious and all I wanted to do was go back to bed but something made me go.  I had my blood taken then went home and back to bed for the rest of the day.  

At 7pm my phone rang, it was a private number, I nearly didn't answer it, it was my GP! I'll never forget that conversation!

"Hello Anna, Its Dr ??? here...how are you feeling?"

"Pretty rough" I replied.

"Are you on your own?" At this question my mind is racing as it begins to sink in that this is my GP ringing me at 7 o'clock at night!

"Err no...my husband and daughter are downstairs" I said.

"You had a blood test today and there is something wrong with your blood so I need you to go to hospital straight away" he explained "I will call an ambulance but if your husband is able to take you it would be quicker"  I randomly blurted out that my hair needed washing....I hadn't washed it for days and used to wash it every day!

At this point I am getting out of bed as he tells me to pack some things as I will be admitted and it will be staying in.  He told me to go to Lincoln hospital which is a 45 minute drive away.....it was the longest journey of my life!

When I told my husband he needed to take me to hospital my daughter started to cry but he managed to calm her down while I called my parents and asked them to come and look after her.  I sat on the stairs while my husband packed random things for me.  I remember thinking 'I've got a Santa nightie on' but didn't really care as I felt so ill!

When I got to the hospital they were waiting for me and as soon as I was admitted lots of bloods were taken and IV antibiotics started....even at this point never in a million years did I think cancer!!  

I remember, when my mum was trying to push my wheelchair over the kerb at the hospital entrance, (my husband had gone to park the car) that a young lad came over to help us and that was the first act of kindness from a stranger that I was to experience! Bless him whoever he was.

That night the nurses were in constant touch with the consultant and said they were treating me for sepsis which seemed feasible. I was also given fluids to protect my kidneys.  I still didn't get the seriousness of it all!

The next morning I had a bone marrow sample taken and even then cancer didn't cross my mind...not me!  A couple of hours later one of my consultants came into my room and just started explaining about the blood and how its normally produced in the body, she then explained about how my blood was acting and that I had AML!  My husband started crying but I was shocked and numb! What the hell is Leukemia anyway?!?  She then went on to tell me about the intense treatment I would have to endure to give me the best chance or survival!  I would have to stay in hospital for a at least a month at a time - OMG this is serious stuff....yet still it was like I was having an out of body experience!

This was the start of my journey which had been so tough, emotional, painful, shocking, sad, eye opening.......hard to put into words!!  Even now I sometimes think.....did all that happen to me, or was it all a very bad dream!!!!!

 

I took this picture the day before I was rushed into hospital!!

When Blood Cancer Rudely Barged into my Life

So I am writing my blog about blood cancer, Acute Myeloid Leukaemia to be precise as I was diagnosed with this in April 2015!!

I have been on an epic journey but I promise there are some funny parts to my story even though some of it is pretty harrowing!

The type of Leukaemia I have - AML is rare and especially at my age (39 at diagnosis) so one reason for writing this is to reach out to others who are going through the extremely tough treatment and those who have been through it too!  I hope to help others as well as myself to deal with blood cancer and I would love to know what to expect emotionally in the future!  I do feel a little alone at times, even though there is help out there, talking to others who have actually been through it would be fantastic!

I am married and have an 8 year old daughter who is finding it hard to deal with and express her emotions and I would welcome any advice from other Leukaemia patients who have been through this too.

I am ready to talk about my journey now and believe that helping others be something positive in the next page of my story!  This totally awful thing that happened to me but it doesn't have to be .  I love helping others and if I can help another sufferer who is in the depths of despair then that would be amazing, I know how much small acts of kindness can mean!  I know that some people don't like to talk about it and that is ok, its important to remember that we all have our own way of dealing with cancer.

I still can't believe what has happened and it sometimes feel like I am telling someone else's story!

Please come back and read more of my posts that will be coming very soon!!  I have soooo much to write about including my shock emergency hospital admission, the wonderful NHS and its staff, emotions, intense cycles of chemo, the side effects of the treatment, loss of appetite - food the enemy, sadness at losing my fertility, spending weeks and weeks in hospital, memory loss - chemo brain, living with blood cancer for ever, losing my rapunzel hair, how my family has coped, how my friends have helped and coped, the power of Twitter and Facebook, the phenomenal amount of support I've had, the kindness of strangers and other patients I've met on my journey, my amazing local race for life story, inspiring others, the positives (yea really!!), oh and lots lots more!!

 

This selfie of me and my daughter was taken only a couple of weeks before cancer came and took over my life!

Much Love......Anna