Michaela D
Posted by

Living life after experiencing AML

Michaela D
Posted by
01 Oct 2014

The support shouldn't stop because the visible signs have gone..

I am due for my 18 month check next week. Aside from my shorter, and now darker hair, I look well. I am working full time and I live a busy life. I spend my weekends with my friends and I enjoy my job as a primary school teacher. People who never knew me would never realise I had been ill last year and they are always surprised when I tell them.

The thing I struggle with is, quite frankly, some people's attititudes. The majority think that because the physical signs are not there, I am well. Because it has been over a year, the support is not needed. I am very grateful and happy to be in remission. I am lucky. I understand that. But the reality is this, I find living with the post-effects of cancer hard.

Imagine this. Every time you shut your eyes to go to sleep. after taking a sleeping drug (which I know has no effect but I am addicted- I hallucinate if I do not take them), your eyes flicker and all you can see is those four hospital walls that you spent so long inside. Imagine the knots of anxiety you get when you are alone. Those dark thoughts you get. The fear of the cancer returning and having to go through it all again. I know my life will never be the same and yes, while I will live a happy life, I know I will never be who I once was. I know this because I have been shown the world is not a safe place and I do live in fear. Imagine every time you get ill, fearing the worst. I get anxious about my immune system- why isn't it fighting it off? Is it back? Every bruise makes me panic. Cancer is all over the TV. Once you have it, everyone wants to tell you about someone they know who has it or has died from it. When I was in hospital, everyone was much older. Everyone I met has relapsed or died. I am the only one left. Sometimes I feel guilty that I am well. It is a hard feeling to come to terms with. Imagine then being called a 'drain on resources' for becoming ill as I was, by people who were meant to care for me. I could go on.

I suppose the point of this post is to raise awareness that people still need the support long after remission. People still need to talk. People need somebody there. People should not feel alone and made to feel that talking about their illness is a burden. I know the effects will never go away and at the moment I am in the denial stage. I cannot accept that it happened to me. I hate that cliche that time is a healer but I know that it is. I currently count down to my next check. I need to make it to two years and then to five years and only then will I feel that I can breathe again.

If you are reading this, and you do know someone that has been through it, take the time to ask them how they are doing? Honestly, a little message really can help lift spirits.

Just because you can't see something physically does not mean that that person needs you any less.



Hi Michaela,
Many thanks for your comment, the Walk was a great success and I am just pleased that it is over for another year.
I read your blog last night and wrote a comment but my laptop crashed and I lost it. I just wanted to say that I know exactly how you are feeling and it is very difficult to live with that ongoing fear. I have now been in remission from AML for 7 years now and I know it is hard to believe, but it is something that I rarely think about now and I have been at the stage for a long time now, that I don't worry if I am not well.
I was exactly the same as you, being unable to sleep for all the scary thoughts, but that very rarely happens now.
My life will never be the same, but for me I think that in some ways it is much better as I really appreciate everything and everyone a lot more, but it did take me a long time to feel like that.
If you do need a chat or off load on someone just get in touch via email and we can chat privately if you want.
Thought it would be nice for you to hear from someone who has not relapsed or died! My contact is helentaitnorth@hotmail.co.uk. Wishing you all the best. Helen x



Thank you so much for bringing to the surface an area that, for me, is often overlooked and in serious need of addressing. When you're going through all the treatment everything happens so quickly that you don't really have a chance to get your head around quite what an ordeal it was and you certainly don't have the opportunity to think about the future and how you might feel post treatment.

Whilst you're in the hospital you have that safety blanket of being able to call on the doctors and nurses whenever you want. That's then taken away and you suddenly left to fend for yourself without any preparation for what to expect in the weeks and months ahead or at least that's how I felt.

I actually took some counselling as I felt this strange pressure of having to be perfect after transplant and make the most of absolutely every single moment. Of course this is impossible and it took me a while to come to terms with that and the fact that I would do things like get the occasional hangover, eat the wrong things and have days where I didn't achieve all that much and didn't necessarily feel top of the world.

I, too, got worried by every little cough and cold and didn't know whether this was normal or not and it is totally understandable that this would be your first reaction especially when you've not been told that this, in fact, is quite common and to be expected as your immune system is brand new and is starting from scratch again. I also had highs and lows, especially in the first couple of years after transplant when my immune system was building up its immunity again. 

At the same time though, make the most of your check-ups to ask questions and sort out an after care regime that works for you. Also never EVER be afraid to get yourself checked out even if you're fairly sure it is just a cold as it's better to be safe than sorry and it will help to put your mind at rest.

The other thing I'd recommend as you're actively looking to do already is talking to others which we hope our blogs, #FeelAlive Friday and, in time, our forums will help to provide. 

Good luck with your next check-up and never be afraid to voice how you're feeling as you're not alone and many others will have thought the same thoughts at some point or another.

Like Helen, I'm happy to talk to you at any time without my LLR hat on as a fellow post-transplant patient. My email is ajackson@beatingbloodcancers.org.uk