Setting the Scene – Where it began

MY ROAD TO ACUTE LEUKAEMIA AND WHERE I AM NOW…

I’ve just looked back over the first few posts I wrote on this blog and although they are still relevant I felt I should write a bit of a summary of my journey so far and how I ended up in this position.  It is rather a long story and to say a lot has happened would be an understatement!

Before I start though as I’ve used the word ‘journey’ it has reminded me of one of my favourite quotes;

I’ve loved this quote for a long time, long before my diagnosis.

So 20th April 2015, a date I will never forget, it’s one of those dates like a major world event such as the Sept 11th terror attacks.  In fact I will probably remember it more easily than an important family birthday!  I had been feeling unwell for about 10 days with what I can only describe as flu like symptoms.  Except I had a rash all over my chest, my neck was really painful and I had heavy menstrual bleeding (which was unusual for me).  Of course at the time I had no idea it was blood cancer but looking back the warning signs I now know were there.  This scenario I have now heard numerous times from other AML survivors and sadly from families of those for whom diagnosis came too late.  Survival rates for this highly aggressive type of Leukaemia are still dismally low with the best chance of a cure involving highly toxic, intensive chemotherapy and sometimes a gruelling stem cell transplant.

As my symptoms weren’t improving it did start to cross my mind that, considering my usual good health, perhaps I should seek medical advice.  On the Saturday and with my neck being stiff and painful, the fever, sweats and rash I decided to go to the out of hours GP service thinking there was a slim chance it could be meningitis. I’m not one for rushing to the doctors for every minor thing but on this occasion felt I should get checked out.  After questioning me and an examination the GP diagnosed a viral infection.

Having already had one week off work I had to go to my local GP surgery for a sick note and as I wasn’t any better I was examined by their nurse practitioner.  We discussed my symptoms and while nothing was conclusive she put it down to an infection and gave me antibiotics.  There was no explanation though what was causing my neck pain which was getting worse (turns out this was my bone marrow causing pain due to the significantly raised volume white blood cells of AML).  As I was about to leave the room the nurse suggested I have my bloods done as a precaution…this decision saved my life.  I left the surgery and nearly didn’t go to the lab (which is at the local hospital) to have my blood test as I was convinced that once the antibiotics kicked in I would be fine.  But something made me go…I remember chatting to the phlebotomist without a care in the world, apart from feeling really poorly.  No idea that I was suffering from Leukaemia, sepsis and my kidneys were in trouble.

That evening my mobile rang and it was a private number, I was in bed so nearly ignored it.  It was my GP who calmly explained that I needed to go to hospital straight away and that if I was on my own he would call an ambulance.  He knew it was suspected Leukaemia as the laboratory had escalated my case to the on call Haematologist and they had then called him. Having seen my blood results whilst I was researching my case it makes for scary reading.  Because Leukaemia has to be confirmed via a bone marrow biopsy he told me there was something wrong with my blood and as my husband drove me to the hospital, 45 minutes away, those words were running through my mind as I tried to work out what he meant, never once did I think blood cancer.  Cancer did cross my husbands mind and I remember him asking the nurses that night what they were treating me for, he was told sepsis which was true but it was Leukaemia that was causing it.  The nurses and consultant who treated me through the night were pretty sure what it was too, I look back now at the concern on all their faces and now I understand why.

When we had arrived at the hospital the team on the ward were waiting and got to work on me immediately taking lots of bloods, putting me on antibiotics and fluids.  I was just grateful that finally they would make me better as I was fed up of feeling so rough…little did I know!  Throughout the night I had more bloods and antibiotics and was moved into a side room in the middle of the night. Yet still it never crossed my mind that I was dangerously ill!

The next morning I had the first of many bone marrow biopsies yet still I didn’t think it was anything too serious and certainly not life threatening.  Not long after that a Consultant Haematologist came into my room, she had tears in her eyes as she told be I had very aggressive Leukaemia, I was gravely ill, would need chemotherapy straight away, wouldn’t be going home for weeks, asked if my family was complete as my fertility would be affected, and the list went on.  I now know that I had 95% bone marrow failure and had been referred to Palliative care, no wonder that consultant looked so upset.

Over the next 6 months I had 4 cycles of high dose, intense chemotherapy with lots of complications, scans, tests, unbearable pain, frightening and sad moments, set backs, weight loss, blood and platelet transfusions and lots more.  But finally in September 2015 I came home to start to put my life and body back together but still with visits to the hospital every two weeks initially, now I go every 8 weeks.  This is to check my bloods for any signs that the Leukaemia has returned, being in remission does not mean you are cured or that the cancer has completely gone.

I’m an Ambassador for the blood cancer charity Bloodwise which I love because after I had been at home recovering for a little while it dawned on me that I needed to use my second chance at life in a positive way, I couldn’t waste the gift I’d been given.  I spent hours researching about my disease and blood cancer in general so that I had a good understanding of it and although scary at times it was empowering.  I want to raise awareness of the signs and symptoms as well as blood cancer in general, inspire those going through tough times not to give up, use my experience to help with studies and trial information and much, much more.

I also started to write quotes to help me express how I feel, quite often there are lots of thoughts flying around in my head so I find this process very helpful.

I wrote this to express how I felt being in remission

There has been many changes including friendships, work, my goals and outlook on life and my most surprisingly perhaps, my personality.  There’s been some highs and lows with the realisation that my life had changed so much that it all feels like it’s not mine anymore.  Coming to terms with life with the Leukaemia is many things and I write about it in this blog.  It helps me to put my feelings down ‘on paper’ and I want others to read my blog and have that feeling of relief you get when you realise ‘phew it’s not just me’.  I have found that whenever I have found that the feelings I’ve been having are similar to someone else’s that it has really helped me move on and feel more settled.

Many thanks for taking the time to visit my blog…please keep coming back to me…Butterfly x