The key one was about possible alternatives.
His regretful expression returned. No chance of an alternative to the drug outlined in the second of the pamphlets he’d passed over. It had to be the Hydroxycarbamide. Now we’re better acquainted I use the familiar form, Hydrea. He talked through its long usage, its reliability in controlling that pesky little mutation and its general acceptability to most people who took it.
Of course aren’t there always but compared to the dangers of not taking it? Some people don’t have any side effects, apparently, so I’m assured. But I’m getting ahead of myself. As always with any such pill taking, finding the right level is a question of starting at a sane minimum and working up till the platelet level stabilises. Usually takes weeks rather than months but nothing’s written in stone.
The benefits of it being a cancer
He then used the C word. Cancer. Hm well yes I had picked that up from the literature. Hydrea is cytotoxic medication, dispensed only by the hospital. But in this instance of this group of blood cancers, their re-classification as cancers had provided access to more funding for research. It had also raised awareness among the general public, most of whom like me lived in a state of blissful ignorance about these issues.
Meeting my new best friend
Then I met their specialist nurse, lovely, warm woman whom I came to cherish for her ability to respond to patient distress, in this case mine.
Clutching said medication I left with my pretty pink and grey capsules to start the next stage of learning. The fun starts when you take the pills and suffer some side effects and can’t 100% assign them to either medication or condition.
How to work out what belongs to what?
The problem was… the problem was that many of the symptoms of the ET as I familiarly call it, I’d had for years. Itching, cold hands, bone pains, tiredness; none severe enough to seek sustained help. Many people with ET suffer no symptoms at all before it’s found. The usual pattern seems to be it’s diagnosed because of another health problem. Shows up only through a whole blood count.
How to adjust to the new normal?
The subtler issues start to become apparent as your body adjusts to the drug and it affects the mental and emotional as well as physical. Anyone taking sustained regimes of medication meets this. Each person deals with it in their own way. I’m a generally optimistic person who dislikes bothering others with my problems. I simply get on with what needs doing and that’s the approach I took.
Initially I went places, visited friends, carried out my activities as normal.
What I didn’t realise was that in the corner of my life sat an elephant. Still small at this stage with labels containing almost invisible writing. If I’d been able to read them I’d have seen the words ‘kidney donation loss’ and ‘future health’.