Initially the doctors thought it was essential thrombocythemia (ET), but after further investigations and tests, it was confirmed it was myleofibrosis. They both fall under the umbrella of myeloproliferative neoplasms (MPN) and are considered as Blood Cancers.
In about April last year 2015, I was having headaches like nothing I have ever experienced before. This headache would start and regardless of what painkillers I took or what I did or how hydrated I was, it just would not go, often lasting for hours and this would happen daily. This went on for about 2 weeks before I went to see the Dr (about another matter) and she suggested a blood test.
After the initial blood test results, I was sent straight to Emergency as my blood platelet level was at nearly 2,000 (usual range 200-450) and I was told that I was at high risk of blood clots/thrombosis, stroke, heart attack. I was put on aspirin immediately and referred to see a specialist Haematologist.
I then had numerous tests and procedures including an ultrasound of my spleen, a CT scan of my brain to determine if there were clots (because of the headaches) and a bone marrow biopsy.
It was the bone marrow biopsy that revealed I had early signs of scarring on my bone marrow tissue (which is usually spongy and soft, but in MF this becomes fibrous and unable to work effectively). This was an uncomfortable procedure and left me limping for a few days after and not being able to sit/stand comfortably for a few days.
I just try to take each day/week as it comes. I see my Haematologist every 6 weeks and currently have blood tests every 1-2 weeks. I think for me, I just try and stay focused on what is going on right now and not think too much about what the future might or might not hold for me. My Haemotolgist at the Royal Melbourne is excellent and very thorough and although they do not know a great deal about the disorder or what causes it, he has closely monitored everything and is reassuring.
After the initial ET diagnosis, Russell and Austin came to the appointment with me and on the way home, I just sat there in the car, trying to process everything and feeling as though suddenly, my life had changed forever. My initial concerns were obviously about what the prognosis was and if I would live to see my Son grow up or be able to have another baby.
Typically MPNs affect people who are 60 +, so not only is it a rare condition, but particularly rare in younger people. The only cure for this currently is stem cell therapy (SCT), which involves heavy doses of chemo and radiation to kill off the ‘bad’ cells before being replaced with donor cells. My sister was tested and she is not a compatible match, which means if/when I need this treatment, I will need to find a donor.
This was pretty full- on to hear and to be honest, I probably haven’t truly thought about what this means for me as I try to just focus on the here and now and face the challenges as they happen, one at a time with the support of my family and friends.
Initial drug treatment started immediately and was Hydroxyurea and mini aspirin daily until my platelet level returned back to normal range. Then in November 2015, transferred to Interferon (via injections 3/week at home) with the hope of being able to have another baby (after 3 months off Hydroxyurea because of the effects of this on the forming foetus). Not much is known about pregnancy and MPNs because not many people of child-bearing age have the condition, so I have met with a consultant at the Royal Women’s who said that they share information globally re: best practice for monitoring/managing this.
How do I manage the fatigue? I have a 3 year old so I figure I’m tired and used to being tired and you just have to get on with it! Interferon side effects can be quite horrible, including flu-like symptoms, but after a few weeks my body seemed to adapt to it ok. I’m lucky that currently, my symptoms are fairly limited. I just try and have a positive attitude and keep on going! I find that exercising regularly helps to keep me feeling good.
My mindset has shifted since being diagnosed. Now when I run/exercise, I think ‘I am so lucky that I can do it’ and ‘I’m going to keep doing this whilst I still can’ and this provides me with the motivation to keep on going.
Initially when my blood platelet levels were so high, I had to stop exercising due to the risks and I hated it! So, now I make sure I keep going and I’ve been told that as long as I feel ok to do it and the recovery is ‘normal’ in that it doesn’t take 5 days to recover from running 5 k, then I can continue.
It is not all easy though. I remember one day in particular, after we had been to the Women’s to discuss whether or not/risks involved with having another baby, it seemed to just hit me. I sat at home on my own and did some reading about the illness and the implications with pregnancy and then allowed myself some time to feel emotional about the whole thing. I really needed this time just to process everything, as I didn’t think I’d done this properly before.
I do have days when I feel really tired that being at work is a real struggle and I need to listen to my body and so I do rest when needed.
I would say to others, that above all you need to try and remain positive and not get too caught up in what the future holds. It’s important to try and live each day in the moment and if you can get out there and do it…..do it! Whether it’s running, exercise, studying, travelling or starting a family.
Being young with this illness doesn’t mean that your life is over, more that you just have to make the most of the time we have and who knows when that is or how long you, I or anyone has! Don’t let yourself become the illness or let it take control of you.
Also, with so many advances in research that hopefully there will be a less invasive cure in the near future.
Out of everything, the way it has affected our lives has been the most difficult thing to accept. Suddenly your decision to have another baby, might not happen, or there might be complications (for the baby or myself). Given that we are already blessed with a beautiful boy, we had to really take our time to consider if the risks of trying for another baby are worth it, but we decided that they are and we are just hoping that everything goes smoothly. I think as long as you do what is asked of you, you can’t do anymore-things are beyond our control.
Running for me is important for my mental and physical health. The days when you don’t want to go, are the most important days to put your runners on and get out there. No-one ever finished a run and thought “I wish I hadn’t done that!” It’s important to take time out for ourselves in this busy life and as a social worker, working with people who are homeless, I find that after a challenging day, it gives me chance to unwind and reflect. I like running without music, because I try to be mindful and take in the sounds, noises, sights, feelings and environment of where I’m running, especially if it’s down by the sea or in the country. I love going on holiday and putting on my runners to go and explore the area.
If there is anyone reading this who thinks “I’m not a runner”, then I challenge you to get out there-use one of those couch to 5k programs and try it-you might surprise yourself and enjoy it! And remember the first 1-2 Ks are hard for everyone, just preserve and you will get into a rhythm. And if there’s anyone reading this who has a similar illness and struggles with fatigue and often feeling unwell, I would encourage you to stay as active as possible, as I think that exercise is so important for mental wellbeing too.