Michaela D
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My experience

Michaela D
Posted by
22 May 2014

Hi,

I was asked to write a blog to share my experiences with you of AML. This will help you understand why I am so determined to cycle from London to Paris next year.

I really do think that I am now ‘unstoppable’. I have a completely different outlook on life and am of the view that if you want to do something- then go ahead and do it! Time is very precious and we spend too long thinking about things instead of going to do them.

I was ill for a while. I work in a school and my local doctor’s surgery just put it down to catching the latest bug.
‘Ahhhh Miss Dunn you have this from the children’
‘Another bug I am afraid- what’s going round school at the moment?’.
I went back and forth to the doctors about 4 times. The last time I went I was told I had allergies and was given a nasal spray. This was actually making my AML worse as it was widening my blood vessels. I was so ‘grotty’ (one of the doctor’s words for me), a woman in the waiting room actually moved away from me- this is a memory that hurts and it has stuck with me.

It got to the point where I couldn’t walk up the stairs- I was crawling. I had a whooshing noise in my head- I was asking people to listen to the space to see if they could hear the same noises as me. Needless to say, they couldn’t. I could hear chirping. I felt like I had waves in my head. Whoosh. Whoosh. It was constant. I got to the point where I couldn’t get to the toilet quick enough- not much dignity left at 23! I was pooing and wetting myself! My nose streamed with blood. It wouldn’t stop and this happened a lot. All in all, I was in a pretty bad way! Nothing seemed to be working. Mum called the GP out and he just prescribed another course of antibiotics. Again, my symptoms did not get better. I got worse. I was losing my eyesight. I would hold my phone right in front of my face, the largest font available and I could not read it. Unbeknown to me, my eyes were haemorrhaging. They were slowly filling with blood.

Mum called an ambulance. Enough was enough. I was taken to my local A&E where I was put in a room with a bed and a Kermode. I stank and was in a very poorly way. I was given a blood test and drifted in and out of sleep. Being so close to death hadn’t even crossed my mind, but my blood level was 3. Normal is 12. I was pumped with bags of blood, freshly frozen plasma and platelets. All sorts of tests were carried out. Funnily enough, the paramedics who took me in were actually told off for wasting their time on ‘just another dehydration case’! I spent the night hooked up to all sorts of machines. The next day, a similar process- blood, plasma- I needed top ups. Around lunchtime, a doctor came in. I had never seen her before and I never saw her again. She walked in and spoke quickly and abruptly. I can still hear her words now.

‘You have Acute Myeloid Leukaemia, Michaela, any questions?’

Before even being able to process this information, she left. It was all a blur to me. Barely being conscious and feeling so tired. I didn’t really take it in. I was young, healthy. I had just qualified as a teacher- surely not? Turns out, my statistics were one in ten thousand. While, my journey was tough, I am grateful that that person was me. I would rather I had to face it that anyone else. I could never have seen a friend or my sisters in my place. In my mind, I saved somebody else going through what I went through and I will fight to raise awareness of the disease and to counsel the treatment of others. I think I put up a good fight and have made us fighters proud. I was told I would be transferred to Barts when there was room.

I arrived at Barts at around 11pm. I hated it. I remember the horrible blue curtains around the bed and I didn’t want to stay there. I didn’t want to be left alone and I hated not knowing what was going to happen. I couldn’t see too clearly too which wasn’t helping and I still had an upset bottom! I had all sorts of tests and the next day a course of treatment was proposed. AML Trial 17. This would include several doses of chemotherapy with a mixture of drugs. The dose would be determined randomly. I was offered other treatments and was asked to sign all sorts of forms. In the end it boiled down to saying to the doctors ‘If you had to do this, what would you do?’. My specialist team there were amazing and no matter how much I hated being in hospital, I will always be grateful because those people saved my life. I won’t go into the details of my stay. But, it saved my life. I was eventually diagnosed on March 7th and on April 11th, after my first course of chemotherapy, I was given the fantastic news of being in remission. My chemotherapy continued and on July 31st, I was finally discharged as an in-patient and have since been back to Barts every few months for a blood check. For anyone in a similar position, just keep saying to yourself ‘This is all in the name of making me better’. I had to tell myself a lot.

I lost myself when I became ill. I lost my identity. I lost friends from their lack of understanding. Perhaps, they were never really friends at all? I lost my confidence. I lost direction in my life. I lost control. I lost me.

I am now, a year on, only really beginning to find myself. I am eventually becoming the person I was. My confidence is slowly coming back. My fun and outgoing side is slowly returning. I have thrown myself into returning to work. I love to teach. I love being with the children. They help me to forget and to feel normal. I tell myself I am normal. I like to think my AML has never happened. I used to wish that I could be put into a coma and woken up when it was all over. As awful as it was for me, I am a better person because of it. This roller coaster ride of highs and lows has opened my eyes a lot. If there is one thing I would say to you, it is to do something meaningful and memorable at least once a week. A walk in the park, a drive to a new place. Everything seems so much more beautiful having been through AML. I am so grateful to be alive and I will fight to raise the awareness of AML and other blood cancers to get the recognition that it needs. If I had known just how important it is to give blood, then I would have donated blood. But, I was naïve and didn’t think about it. Unless it affects us, we rarely do.

My pledge is to cycle from London to Paris next year. I have also applied for a Brighton marathon place. I will cycle. I will run. I will do whatever it takes to raise awareness. I will take this part of my life and I will make it my message.

Michaela

Comments

27.05.2014

MIchaela - thank for sharing your story with us. I was really moved by what you had to say. I'm a member of staff at LLR and have just signed up for Run to the Beat. I'll be running for you Michaela, for you and everyone else that has been affected by blood cancer. Thanks again, wishing you all the very best for the future.

Anonymous
27.05.2014

Hi Michaela, thank you for sharing your moving story. You had to go through some very tough times, but I'm so glad to hear your recovery. And thanks for your fundraising efforts - very impressive and inspirational!

As a member of the Research team at LLR, this sort of story makes us even more determined to support the best research to find new, kinder treatments and better, faster diagnostic tests.

Sara T
27.05.2014

Oh Michaela, I just want to echo Jason's thanks for sharing your story with us.  As a fundraiser, words like yours stay with me when I'm working, they remind me why I do what I do.  Thank you, and all the very best. 

27.05.2014

Michaela, thank you so much for sharing your story. You've been through so much but come out of the other side even stronger and are a real inspiration to us all. I'll be running Run to the Beat for people like you and others affected by blood cancer too - the way your recovery is going you'll probably end up joining us!

28.05.2014

Thank you for all your kind words and support.

I have just had my confirmation email through for Run to the Beat!

Hope to see you all there. Now for some fundraising and to buy a pair of trainers!

Love Michaela :)

28.05.2014

See you there!

28.05.2014

Michaela, I was very touched to read your story, the courage that you've had to get through this horrendous experience is inspirational but I also understand that weird thing of "being a better person for it". One of our Trustees recently directed me to a TED talk by Andrew Solomon, which is all about how the worst moments in our lives make us who we are, he says " Take the worst events of your life and turn them in to a narrative of triumph" -it reminds me of you and many other patients and their families who I have had the privilege to meet.

Thank you

Anonymous
14.06.2014

Michaela my dad has just been diagnosed with alm reading your blog has given me the strength and raised my fighting spirit to help him get through this. I hope you continue to grow in health and live a long and successful life.

Anonymous
14.06.2014

Hi macca here. Just got the news I'm in the fight read your blog had all symptoms but oblivious to them good to see it's not old age getting to me. Great help to read it. Will be a long haul iknow but will see you soon. Thx for the help it has given me. Macca

Anonymous
14.06.2014

Hi there. I'm macca am just climbing in the ring to start the fight. It's good to know I'm not alone. Your symptoms mirror mine drs said chest infection
Antibiotics will sort it out. Any way we now know am ready for the battle
See you as my second in the corner
.will chat again when I score the k.o. Thx for your share it helps

Anonymous
16.06.2014

Well done Macca for having such a positive attitude- it is so important to keep upbeat and not to lose your mind to the disease too. Keep up the fight. Keep your mind busy. Keep happy. x

Anonymous
16.06.2014

We have set him up a blog so like you he can inspire and support other along the way he has asked me to send you the link http://thejourneytokoaml.wordpress.com/

Anonymous
16.06.2014

Hi Michaela,
I'm so so happy to hear that you are doing well and have returned to school. You are a very strong, brave person and thankfully have beaten this cruel illness. It's so nice to you are getting your life back and also thinking of others. wishing you love and happiness. Donna x x

Anonymous
16.06.2014

I was really moved by your story Michaela. I too had AML when I was 22 and was extremely fortunate to be treated at Bart's. I am now 62 and will be celebrating 40 years later this year. I still have an annual check up at Bart's which I really look forward to. All the best to you.

Anonymous
17.06.2014

Michaela,
My daughter Avery was diagnosed with AML last April,6 days after 13th birthday. Defiantly not how she wanted to start her teenage years. Her symptoms were just like yours. Not know that the headaches, night sweats, loss of appetite, loss of color of her skin, fatigue, being anemic and finally not being able to walk were all symptoms of leukemia. This all happened within a months time. We had taken Avery to the doctor several times in a two week time span only being told she was anemic. Until we took her for the last time where she could hardly walk and her hemoglobin was at a 4 that the doctor ( that we now do not go to) told us to rush her to Children's Mercy Hospital in Kansas City, Missouri. It was late evening when we arrived and she was so dehydrated they could not find veins to start an IV. It was Avery's first time to ever be in a hospital. It was not the most pleasant time for me as a parent seeing her go through all this pain and not knowing what was wrong. The nurses worked for about 30 minutes or so finding a vein. They finally did but it was a long process. We finally got into a room at 2am. Still not knowing what was wrong I was up all night wondering and watching Avery as she slept. The next day Avery had a bone marrow biopsy and on the third day we finally got Avery's diagnosis. It was AML and she was on a stage 4. This was not the news we wanted to hear but I knew needed to be strong for Avery. We told Avery why she was sick and what she had. There were a lot of tears but Avery knew she was going to be strong this the whole thing. With the support of her family and friends Avery fought and stayed strong. After the first round of chemo Avery was in remission. Praise god! She was in and out of the hospital for treatments but instead of doing the fourth round of chemo we decided to do a bone marrow transplant. Both her sisters Alyssa and Ashley were tested and by a miracle from above both her sisters were matches. Alyssa her older sister would be the now who donated. Alyssa was very brave she had never been in a hospital just like Avery. Avery had long beautiful blonde hair and now that her hair is growing back in it is very dark like her sisters hair. Avery is still 100% donor and leukemia free! We are very blessed to have Avery with us still today and we cherish every moment with her and all her sisters. I am so happy to hear you are also in remission and healthy. You are a beautiful young woman. As we say in our house Stay Strong!
Tena Borron

17.06.2014

I have been overwhelmed to the response to my blog.

Thank you all so much for your kind words and wishes.

To all of those affected by blood cancer, I will continue to raise awareness for us all.

Lots of love,

Michaela x

18.06.2014

Me too!