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It’s Okay to Not Feel Okay

Today I’m having one of those ‘blue days’. A time when you feel a bit ‘urgh’ but can’t pinpoint why. It could be because I’ve been stuck in doors all day, waiting for a mattress to be delivered. Or maybe it’s because I’m extra tired, as I worked a few hours yesterday. It might be because I’m missing my husband, who has been working late recently. Who knows! It could be all of these things or something completely different.

I like to think of myself as a ‘cup half full’ type of gal and I always try to find positivity in the life around me. I’ve waited in all day because we’ve got a brand new mattress – goodbye achey backs and unsettled sleep. I’m tired because I’ve returned to work. I’m finally feeling like my old self and I’m thrilled to be back in school. My husband is working late so that we can afford for me to take a slow return to work. It also means we should be able to afford a little holiday this year. I know all of these things but sometimes a positive outlook on life can’t suppress your emotions (and hormones).

It got me thinking about these days when your emotions decide how you’re going to feel. I find myself getting frustrated when a ‘blue day’ creeps up on me. But actually I need to embrace it and remember that it’s okay to not feel okay. In fact it’s more than okay. To feel, whatever the emotion, is to live. How can you appreciate the happy days, if you haven’t experienced the sad ones?

So today I am embracing that ‘blue’ feeling and understand that it will pass. Just like a tulip, sometimes I will feel low and in need of light. But I trust that the sunshine will appear in my life once again and when it does, I will rise to the occasion.

Six Month Update

I’ve just had my results from the hospital and I am OVER THE MOON!! My PCR data came back and the abnormal white blood cells have gone from 2.5% to 0.156%. I couldn’t quite believe it when my consultant told me.

Remission is getting closer and the realisation that I’m truly kicking cancer’s butt has become apparent. I’ve been so fortunate that the medication is working with my body to kill off these cancerous cells and the side effects are very minimal now.

I’m starting to get my life back and I am so thankful. I’m in talks with work about starting a phased return and my social life is beginning to pick up again. I’ve started to book in meals out and theatre trips. I’m not quite ready for an all night bender but I’m at least I’m able to stay up past 9pm – just!

Don’t get me wrong the fatigue is still an issue but it’s no longer holding me back. I’ve learnt to listen to my body and rest when I need to. I don’t fear the tiredness anymore and instead I embrace it. I’ve learnt to lean on others for support when I need it and have learnt the ability to say ‘no’ when I need to. Something which I used to find quite difficult. I hate to let people down or miss out on things. I’ve realised that it’s not about quantity but quality. I’m better off using my time and energy for things that truly matter to me and my family.

Today I am wearing my warrior hair.
I am fierce, I am fearless. I am fabulous.

Three Month Update

After I was diagnosed my consultant started me on a chemotherapy TKI drug called Nilotinib (Tasigna). I’m fortunate that this type of treatment can be taken at home and it comes in a pill format. I take two tablets, twice a day, and stop all food two hours before and one hour after. It sounds quite complicated but you would be surprised how quickly you get into a rhythm.

The first two weeks were the toughest I would say. My body responded to the treatment in a variety of ways. I became very tired (even more so than usual) and I had flu like aches in different parts of my body. I had regular headaches but this was normal for me at this stage. The worst side effect I had was a sharp pain in my spleen. I had an ultrasound and they couldn’t detect anything abnormal. It was most likely my spleen reacting and getting use to the treatment.

After about two weeks most of those side effects stopped. I’m three months in now and all that I have is fatigue and the odd ache here and there. I’ve had a little hair thinning but nothing too drastic. Just a bit more hair on my brush and in the plug hole!

I had a PCR blood test two weeks ago and have finally received the results. My BCR-ABL levels have gone from 98% to 2.5%. I am literally OVER THE MOON. The results mean that the drugs are working and they are working well.

The PCR test is looking at the amount of abnormal blood cells in a sample of my blood. When I was diagnosed 98% of my white blood cells were abnormal (cancerous). Three months in the same test has been repeated and only 2.5% of the cells are abnormal. Amazing progress! I am one happy lady, who is feeling so very thankful and blessed.

How it all Began

It’s quite amazing how your life can change in a split second. I know that sounds cliche but it’s so incredibly true.

Six months ago I had it all figured out. I was enjoying my last few weeks of maternity leave, I had plans sorted at work, events scheduled with friends and we were already discussing baby number two. Then the headaches started… five weeks of feeling like an elastic band was tied around my head. After seeing a doctor and receiving a blood test, it turned out my white blood count was 44,000. The average person has between 4,000 – 10,000 white blood cells in their body, so it was at this point that I knew something was wrong.

The next twelve days were crammed full of blood tests, haematology consultations, a shit load of Googling and a god awful bone marrow biopsy! The worst bit of it all was the waiting. I was living life in a limbo land of fear, anger, sadness and regret.

I was finally diagnosed with Chronic Myeloid Leukemia (CML) and the big C word was then casually dropped into conversation. Just like that my life had done a 360 and I found myself on a completely different path, with no idea where I was heading.

As the weeks have passed I have found myself growing in determination, positivity and strength. I know I’m only at the beginning of this war, but Cancer sure as hell picked the wrong chick to mess with. This Leukette won’t go down without a fight!