Jennie Barnes aged 25 has lived with essential thrombocythaemia (ET) since she was diagnosed at the age of 13. In November 2013 at a routine consultation she was told that this had transformed into leukaemia. In the weeks that followed Jennie wrote an honest and moving blog about the ups and downs accompanying that diagnosis and has kindly agreed that MPN Voice can publish extracts as part of our real stories section.
January 29th 2013
I should be in Paris right now. Instead I’m sat on my sofa getting ready to begin my journey to fight the dreaded leukaemia. Let me take you back 10 years and three months……
At the tender age of twelve I was your typical scrawny teenager, too skinny for my age and size, ginger hair and braces and as far from cool as you could get. The month before I had a couple of teeth taken out to fit my brace, I bled and bled, prompting my dentist to recommend a blood test.
The next month just before my thirteenth birthday there was a knock on the front door. Mum answered and it was the doctor. The doctor showing up on your front door, weird right! He asked if he could come in and advised us to take a seat. The next 5 minutes are a blur, but it involved my mum and dad crying, me crying and the doctor having that look on his face when they have to tell you bad news. They suspected I had a type of childhood cancer.
I was rushed to a children’s hospital and placed on a ward of very sick children, all had lost their hair! I started on hydroxycarbamide which made me quite sick and I was prodded and poked and had lots of blood samples taken. I was terrified of needles so this was a traumatic ordeal for me. I remember was being taken down to have a bone marrow trephine/aspiration. When you’re a child they give you a general anaesthetic. I woke up and felt as though I ‘d been kicked numerous times and it hurt to stand, sit down or move at all. At this point I was back living at home and I went back to school. It turned out I didn’t have leukaemia I had essential thrombocythaemia ( ET)
January 30th 2013
For the last 8 years or so I have carried on my life as any normal teenager would. I’ve worked hard, played hard, fallen in love, thrown tantrums, fallen out with friends, made friends, moved away from home, went to university and had numerous jobs. All this time, as far as I was concerned, I was healthy and normal! My symptoms ranged from hair loss, burning sensation in my hands and arms, fatigue and general tiredness (all the time), shortness of breath, pins and needles, needing the toilet all the time and finally, severe anxiety!
Until September last year I thought everyone felt these sorts of things especially the tiredness. Turns out I was wrong, it wasn’t normal. In September I discovered MPN Voice and the online community. They helped me realise that it’s ok to say you’re too tired and to ask for help and question the doctor.
It’s because of MPN Voice, that when my doctor asked ‘ so how are you feeling today?’ Rather than my usual answer ‘fine’……I said ‘ actually I don’t feel fine, I’m tired, my bones ache and I feel rubbish.’
My doctor was great, consulting with a specialist in London about a new drug that I could maybe try which might not make me feel as rubbish. But first I needed another bone marrow test just to be on the safe side! This was where it all started to go wrong for me.
The test results came back and that’s how leukaemia became part of my life…
Feb 16th 2013
Yesterday, Friday the 15th of February was D day, or so I thought. It turns out yesterday was the best day of my life. …….. I’m still struggling to comprehend or understand exactly what happened. I may have to go back to November to when this all started.
In November when my results came back from my bone marrow biopsy I had 7% blast cells. Blast cells are immature cells which should turn into either white blood cells, red blood cells or platelets. In normal circumstances everyone has blast cells and will range from 0% to 4%, anything above is considered a risk of transforming into leukaemia. Anything above 7% is leukaemia and requires immediate treatment. I had 7% therefore plans were started to perform a bone marrow transplant.
In a matter of weeks a donor/match was found for me from the Anthony Nolan bone marrow register. I started IVF treatment to freeze some eggs and made the decision to undergo my chemo and transplant at a different medical centre to where I had previously been treated. At the new centre my consultant wanted to do another bone marrow biopsy to determine the level of the cancer cells and to determine how much chemotherapy was needed before we started.
On D day ( Feb 15th), we got to the hospital, I had bloods taken as usual, and waited until the doctor called us in. This time it wasn’t just the doctor at this appointment, my community liaison nurse was in the room along with my transplant co-ordinator. I assumed they were there for extra support and to talk me through the treatment plan. The first question the doctor asked me was ‘so do you have anything to tell me?’ I replied ‘no’. He then said ‘well neither do I’ My initial reaction was anger! What did he mean he didn’t have anything to tell me? I wanted details I wanted to know when my treatment was starting. Then he said ‘I have nothing to tell you because you don’t need a transplant, you don’t have leukaemia!’
I didn’t respond, neither did mum, dad or my fiancé John. I didn’t understand, what did he mean I didn’t have leukaemia? How could I not, I had already started towards treatment, my donor was on standby, my IVF had been completed, I’d had ECG’s, scans, hundreds of blood tests. ‘Jennie you don’t have leukaemia!’
I cried, I sat there and cried. For the first time in 3 months I was crying and they were tears of joy not sorrow. I still didn’t believe him, so he showed me the test results, it was there in black and white. 2% blast cells. Normal, no leukaemia cells, no more than the average Joe has!
Feb 21 2013
So after the happiest weekend of my life, you would think or expect it to be business as usual. Well it is apart from a few little niggles. The reality is that I now feel worse than before, the reason being I’ve started on a new medication or rather an old one for me, hydroxycarbamide.
For 10 years I have lived with this rare blood cancer and only now am I understanding that more needs to be done to make people realise that we shouldn’t just brush it off as a ‘blood disorder’ as I often described it to people. It is cancer and we shouldn’t be afraid to talk about and we shouldn’t hide the fact that we feel awful on days when we do. We should make a fuss!
That way we can raise more awareness which in turn will raise more money for research to find better ways of treating the cancer after all it isn’t curable only treatable. People with MPD’s have them for life, there is no remission for us.
So the more people that know about it the more likely it is to fund research into better treatments.