Take one with food

Take one daily with food.

Sadly, that’s not a glass of wine being referred to. It’s my new drug regime. A daily dose of chemotherapy taken orally with food. I’ve been diagnosed with a rare blood cell cancer – Myeloproliferative Neoplasm. More specifically: Essential thrombocythemiaIt’s where the bone marrow produces too many platelets. The danger being that they can cause clotting, heart attack or stroke. But the real concern is that if untreated it leads to acute leukaemia. Not nice.

Strangely, apart from feeling tired I haven’t had any real symptoms to speak of – only the occasional feeling of being ‘bone tired’. But that’s just a symptom of a busy life.

My doctor thought my platelets were too high when I had a blood test to monitor the effects on my liver from another drug I had been taking. And he began to be worried. But for over a year my platelets were high – no-one else thought anything of it. This new doctor thought I should see a haematologist. I didn’t really think that anything much was wrong (I’d  had a very low iron count for ages but it had slowly improved), but I did get a strange feeling when I found that the haematologist was in the Oncology department of the hospital. That sent a shiver of anxiety through me.

It was a quick visit with a possible diagnosis which required a further set of blood tests from both the hospital and an external pathology lab and possibly a bone marrow aspiration and biopsy (ouch!)  Still I thought nothing of it.

And then I arrived for my follow-up visit to be smilingly assured that indeed I did have this rather rare blood cell cancer, but hey, they got to it early so good news: it hadn’t depleted my bone marrow and beat a path to leukaemia. And further good news: all I need to do is take a chemotherapy drug orally for the rest of my life. No problems.

Side effects? “Most people handle them fine” was the doctor’s response. The pharmacist was a little more alarming: “these are very toxic”. She proceeded to go through the list of possible side-effects; with each one a sense of disbelief and horror settled in (the leaflet advises you to wear disposable gloves whilst handling the capsules). Of course, most people (who are these most people?) don’t get all the side-effects. But should some of the more severe ones happen: Do not pass go. Call an ambulance and get to the hospital. Stat. OK. And then there’s the problem of my immune system being compromised so I have to be careful not to catch colds, not to bruise, not to bleed.

So here I am, week 2, still struggling to process what it all means. Still trying to cope with how strange my body feels. Wondering every day if I’m going to be able to get up and do things, get to yoga or will I be on better terms with the toilet bowl.

The things that most get to me is the overwhelming tiredness, a sense of being weary, depleted; a lack of energy, a lack of joy and an accompanying sense of frustration. And then there’s the nausea which can be just a mild rolling queasiness or a more virulent retching. Either way it makes it difficult to get on with life. And finally, the lack of appetite. This has surprised me. It’s not something I’ve really experienced before – the total lack of desire to put food into my mouth, to eat. I compensate by making juices and eating grapes and sometimes having some broth. I try and have a proper meal in the evening but it’s often a struggle to get through. The worst thing is that a lack of appetite means a zero level of interest in cooking food. For me, this is going to be a great challenge.

All in all, it’s not a big thing. Once my body adjusts to this new chemical regime I’m sure I’ll be fine. Meanwhile, I just have to wait and see how I feel each morning, each afternoon, each evening. I can’t plan to go do my favourite yoga classes because I have no idea whether I’ll be able to get up and make it. So for now, I go slow. Real slow.

Essential thrombocythemia (ET) is a rare type of blood cancer. ET occurs when the body makes too many platelets, the part of the blood needed for clotting. It’s a rare chronic disease diagnosed in an estimated 3 per 100,000 population.

What are the odds!!