How much do you want to know about your cancer

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 and I would love to hear your thoughts once you have read this!  

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?  

Since I have been writing this blog I have been contacted by lots of other patients and some are like me and know a lot about their disease others don't.

The blood cancer charity Bloodwise are also very aware that it is a personal thing and all their information leaflets explain it is up to the individual.  They are happy to support and answer any questions you may have and are currently designing a website that will cater for everyone

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

Random Flashback Triggers

I have found over the past few months since I have been in remission I've found that at any time when I am busy getting on with my life suddenly something can trigger a flashbacks.  These can be the random things and the memory they revive random too!!  I went through so much while I was fighting AML and it's so hard to put it all down...I still have a lot of writing to do!

I decided to write this post now as the other day I wore my 'summer' dressing gown (yea I know we are still waiting for summer and it's now June!).  Two sad things came to me; firstly when I bought the dressing gown from Next I really liked it as it was exactly what I was looking for...lightweight but still snuggly, secondly I used to love the smell of freshly washed clothes but when this particular washing powder brand scent hit me it was not pleasant.  My mind immediately flashed back to me in hospital, getting out of the bed, putting the dressing gown to go to the bathroom.  This was such a hard thing to do at the time as I was so weak, it would take me ages to work up the strength.  Just one example of how simple things really exhausted me! Once I'd made it back to my bed after what felt like running a marathon I would collapse and lie there getting my breath back.  Oh that unrelenting feeling of sheer exhaustion day after day, the shortness of breath and total loss of confidence in what my body was capable of.

Note to self...don't buy that particular brand again. Shame as I used to love that smell!  

Another example, the other day I was reading a book and saw the word 'acute' and my heart missed a beat, my hands tingled and I started to panic.  The words 'you have Acute Myeloid Leukaemia' flashed into my mind and the overwhelming fear was back.  This book was just a crime novel with absolutely nothing to do with illness or cancer.

Washing my hands always makes my anxious as while I was having treatment I became so paranoid about picking up infections this became a very important ritual.  I wouldn't touch door handles and could see germs everywhere around me.  I wonder how many others like me have now become OCD about this even once treatment has finished.

It's crazy the things that cross my mind now...

Let me know what your triggers are???  I would love to hear them and know I am not alone in this...love Butterfly xx

What it's like to fight #Cancer

I was asked by Healthy Magazine to share my experience of suddenly being thrown into the world of Cancer.  I was happy to talk to them and their journalist was lovely and wrote a great article summing up our conversation.

When the magazine went on sale I was contacted by a lady who was so touched by my story that she found me on social media to reach out to me.  Her husband had fought Leukaemia over 20 years ago and she wanted me to know that he is doing really well and that I too should be positive.

Have a read and let me know what you think...you can contact via the form on this blog!

There is a link below so you can take a look  ~~  Healthy Magazine Article

Platelet Mishap! #BloodTransfusions

During my treatment for Leukaemia I had numerous blood transfusions and platelets.

I have learnt so much about cancer treatment in the past year, one of them being that cancer patients often need transfusions, I had no idea before!  So folks keep on donating blood, I used to before I had Leukaemia.

At first I found it hard to even look at the blood going into my vein...I just felt uneasy about it...this was something from another person's body and was yet another thing to get my head around. Obviously in the end I had so many that I got used to it.

One of my many transfusions

Transfusions are needed due to extremely low levels of platelets in the blood caused by the cancer. However, even though I was given the correctly matched blood my body started to reject it, something called 'transfusion refractory thrombocytopenia'.  This is the body's immune system reacting to proteins in the donated blood.

When a tissue is transplanted whether it is a kidney, stem cell or blood the recipient's immune system may recognise it as being from a foreign source and respond by rejecting the transplanted tissue. The antibodies in the recipient's body cause the rapid destruction of the transfused platelets preventing the control of bleeding, I was actually passing blood.  It is a problem that many AML patients have.

As this happened in my body red dots started rapidly appearing all over my skin and my legs became really swollen.  As soon as the nurses saw this reaction they rushed to speak to my consultant.  After this I was given specially HLA matched blood.  This is where the antigens in the blood between donor and recipient are matched.

The science bit!!!
HLA stands for Human Leucocyte Antigen and they exist on the surface of platelets but are not found on red cells.  HLA is a part of the protective mechanism of our immune system and its used to distinguish between 'self' and foreign antigens that may enter the body.  When this happens antibodies are made to destroy these foreign cells.  Most patients don't need HLA matched platelets but, they are used a lot for patients who have Leukaemia.

When this happened to me it was really frightening as my body was rejecting something it desperately need in order to survive.  I was really distressed at the time as I was already very ill and this was yet another set back, yet another heart stopping moment!

Red dots on my skin sent alarm bells ringing!