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.
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.
|In hospital during my first cycle of chemotherapy when I was very ill|
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