Butterfly Anna
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How Much Should you know about your Blood Cancer?

Butterfly Anna
Posted by
24 Feb 2017

A Blog about my journey through researching my blood cancer and how I feel about it

These are probably questions you have asked yourself at some point following a cancer diagnosis;

I know I have cancer...why do I need to know any more than that?

How much should I know?

How much is too much or too little?

What will my consultant or those around me think of me if I ask too many questions?

My answer, in my experience is that it's YOUR CHOICE there is no right or wrong and it is ok to change your mind as you go along your cancer journey.

This post is about my personal experience

When I was first told I can cancer all the said was 'you've got Leukaemia'.  That was it and at the time that was all I needed to know.  Health professionals are very experienced at delivering this kind of news so don't give you much information at the time of diagnosis.  I remember the consultant telling me that she would come back later to give me more information as what she had already told me was enough for now. When she came back later it was to ask if my family was complete. No wonder she didn't want to tell me everything at once.  Looking back if I had been told more about my cancer I wouldn't have taken it in and at that point it wasn't the right time so I am happy with how they handled it.

For quite a while I didn't even know what type of Leukaemia I had, I wasn't aware there were different types.  Later on when I was told it was Acute Myeloid, which meant nothing to me, again I had no desire to know any more.  All I could think about was getting through each day and finding the strength to be strong and fight.  My was mind focused on how awful the extremely unpleasant side effects of the chemotherapy made me feel.  And the pain...it was unrelenting and so distressing.

On a few occasions my husband said 'you don't understand how ill you are' as he was well aware of how deadly AML can be.  My family knew too but, they chose to keep it to themselves, they spent hours by my bedside as my condition deteriorated and more and more complications arose.  During this time it never crossed my mind to question what my prognosis was.

Sometimes I think it was my mind's way of protecting me and that survival instint getting me through an extremely drawn out traumatic time.   Once I looked at the Macmillan website for more information and found I couldn't read it as it really scared me.

When I had been at home for about a month after finishing my treatment I started to think about my cancer and what it actually meant.  I felt extremely confused about it all so needed to make some sense of it.  I'd had lots of tests, scans and drugs so needed to understand why.  Plus I've always loved learning new things and when I would have a 'breakthrough' moment when finally understood something about Leukaemia after doing a lot of research it made me feel great!  Strange I know but looking at it from an objective point of view it felt good grasping something new!

I met up with a friend who also has cancer which is a rare one and is currently taking part in a clinical trial.  She asked me if I had done much research and at the time I hadn't, I didn't want to.  She told me she had spent hours researching hers and knew everything there was to know.  Now I totally understand where she is coming from.  I have also spoken with another friend who had a similar very traumatic cancer experience and she felt the need to know absolutely everything.

Then suddenly I was like a detective on the trail of a murderer, I needed to find out everything I could about my adversary.   Even though at times my heart would stop at the dismal statistics or scary facts that I came across I had this inner voice spurring me on.  As the saying goes 'knowledge is power'.  

Now i feel that as long as I know everything, no matter how bad, I know what I am dealing with. When I was first told I had Leukaemia it was such a shock, this way nothing will ever be able to shock me again.  There have been eye opening, gut wrenching moments along the way like when I discovered what remission really meant, that relapse was a possibility, that I had been under the palliative care team, that I could suffer long term side effects, that only 10% of my bone marrow was normal, that statistics never mention life expectancy past 5 years and so on.

I have asked my family to go over what happened and they have told me everything they can remember and my husband kept notes in a book which I have found really helpful.  I also asked my GP for copies of my notes from the time running up to my hospital admission to help me understand what happened.  When I asked my consultant about my cytogenetics he did comment that most patients don't want to know, that being in remission is all need to know.  For me I needed to know what being in remission meant and when I'd asked if it could come back and he'd said yes I needed to know more.  What did that actually mean?  

My consultant has answered any questions I have asked honestly and please don't be scared to do the same...I even asked him if it would be ok to get the tattoo I am planning.  Remember its your life, your body you are entitled to know anything you want to.  The same goes for any questions you have about your treatment options.

Don't feel after reading this that you have to do the same as me...now is the time to do what you want and what feels right for you.  It's a very personal a choice and I have been on both sides during my journey.  Also whatever you decide at this moment it is not set in stone.

Hope this has helped and that I have explained my thoughts well...much love Butterfly xx