Day 96: well, that’s that then

May 27, 2016September 29, 2016 ~ Rachel ~ 1 Comment

After reporting my last set of dodgy results to the rheumatology hotline two days ago, I picked up a voicemail today telling me to ‘stop taking my methotrexate straight away, arrange another blood test for next week and then give them a call – leaving a message if I couldn’t get hold of anyone.’

That was it. There was no discussion about reducing my dosage again; no explanation about why my bloods were behaving erratically; no ‘we need to see you to talk about your options’; no reassuring me everything was in hand; no nothing. Hell, they didn’t even get the right meds. The last time I checked I was on azathioprine, not methotrexate. It’s rather disconcerting when the people in charge of your health can’t get even the basic facts right.

So here I am right now, a mixed bag of emotions ranging from frustration and disappointment to anger and relief. I know, I sound like the character line up for Inside Out. Or should that be: Inside Lupus

The more observant among you may have noticed that Joy is missing…

First in the line-up is frustration: it took me a good four months to psych myself up to take the drug in the first place, not to mention the endless weeks after I started, when I felt like absolute shit. This all feels like it was for absolutely nothing. The disappointment is because it’s only very recently that I’d finally started to feel the benefits – and it was giving me a sense of hope.

Then there’s the anger because I can’t believe the prescribing, monitoring and stopping of a medication like this is handled in such a haphazard, ‘no one really gives a damn’ way. Come to think of it, I’m not even sure my care team would have noticed something was up if I hadn’t called to let them know. Slightly disconcerting.

And then finally there’s the relief, which admittedly seems to contradict the three emotions that go before. Only yesterday I read a blog that reminded me about the links between taking these chemo drugs and the increased risk of cancer further down the line. I had a mini meltdown (the 100th of the week) and all my worries that I had to block out just so I could swallow the first pill came flooding back. I started to second, third and fourth guess the decision I’d made. What if I was ‘borrowing time’ now to control my Lupus pain, but as a result, would increase the chances of that ‘time’ being snatched back in the future by a deadlier disease?

Of course, it’s an unproductive way to think as no one can predict what lies ahead and there’s such thing as a correct answer. I guess the question is: what price do you put on the quality of your present life and what risks are worth taking?

I feel quite wrung out by the whole experience, but I guess it was worth a shot. Being a person who believes that everything happens for a reason, I’ll just put it down to my body deciding this wasn’t the right treatment for me. How very rational and Zen that sounds, even to me!

So until someone with a medical degree tells me what happens next, it’s onwards and upwards, I guess.

If you want to recap on the whole azathioprine drama, it started from here: The Indecision Months, Day 1, Day 3, Day 7, Day 10, Day 20, Day 60 and Day 94.

Day 94: what do you mean I’m abnormal?

May 25, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Four weeks, multiple blood tests and endless phone calls later and I get the feeling things aren’t going so well. Well, isn’t that just typical. My energy levels are finally up and the pain’s under control, but lo and behold my treacherous body just ain’t having none of it. I ask you, if you can’t even expect a bit of loyalty from your own skin and bones, what hope is there.

I’ve had one set of dodgy blood results after another. One minute I’ve got a low white cell count and poor liver function; the next my white cells are on the up but my bilirubin levels are elevated; the next my liver is feeling happier but my white cells are dropping off and as for my neutrophils, well they’re now going into free fall.

For the record, I haven’t got the foggiest what’s actually going on inside me right now. I know I should probably be all clued up on what’s what, but I haven’t the faintest idea what a neutrophil is, does or even looks like. Or, for that matter, why my GP is currently freaking out because I should have more. Her last message on my voicemail told me to call her back immediately to discuss my ‘abnormal results’. Sugar coat it why don’t you. Naturally, this sent me straight back to panic station central. I’ve decided, I don’t want to be sick anymore. Can someone stop this train and let me get off?

I probably wouldn’t be so alarmed if I thought my rheumatologist gave a damn – but it definitely doesn’t feel that way. From where I’m sitting, it seems that he gave the OK to pump my body full of chemotherapy, then, job done, buggered off to do something more fun himself. Like golf perhaps, or a spot of fly fishing. After years of seeing him religiously every 6 months, I’m now not scheduled to check in with him again till January 2017.

What the hell? Another 8 more months of this stuff and I could have grown an extra limb or a set of gills. Or turned a fetching shade of radioactive blue. I’m thinking something along the lines of Jennifer Lawrence in X-Men, just with smaller, post-breast feeding boobs and considerably less muscle definition.

Rewind to Day 60.

Day 60: it was all going so well

April 21, 2016September 29, 2016 ~ Rachel ~ Leave a comment

The last five weeks have all been a bit up and down; some days I’ve felt great and other weeks have been a total disaster. The last couple of weeks have been particularly bad, however, but until today I just couldn’t work out why. I knew I hadn’t been ‘pushing’ myself (no base jumping or tiger wrestling) yet the brain fog well and truly descended upon me and I’ve had the energy levels of a snail.

The reason for this became clear, following my third blood test on Monday. I had a call this morning to say my GP needed to speak to me about my results. I admit I freaked out, just a little. In my experience, doctors rarely call you at home to tell you anything you’d actually want to hear. The last such home call I received was from a different doctor, telling me I had to see a neurologist immediately as my life was in danger. But that’s a whole other story.

A flurry of phone calls ensued between my GP, the rheumatology nurses, the rheumatologist and myself. Apparently, my white cell count and my neutrophils were crazy low, and this put me at a much greater risk of infection. I swear I could feel my chest tightening and a tickle in my throat as soon as she told me.

If you so much as cough or sneeze or feel slightly hot or unwell you must come into the surgery straight away, my GP warned me. But I’ll never get an appointment, I pointed out. Consider this a fast past to get in whenever you need, she assured me, just say you have to be seen as a matter of urgency.

Hmmm, look forward to trying that one out on the ~~bull dogs~~ receptionists who man the surgery phones. They seem to regard every enquiry for a same-day appointment as a completely unreasonable and unnecessary request. I once had to throw myself, weeping and wailing across the counter top before they reluctantly ‘allowed’ me to see a doctor.

To cut a long story short, my azathioprine dosage has now been cut by 50mg to see if this will bring my bloods in line. I’m also back to vetting all my visiting friends in case they or their offspring are infectious or sick. My melodramatic self is now picturing having to live in a vacuum packed bubble for the rest of my life. Yes I know, I’ve already told myself to get a grip on reality and calm down.

Rewind to Day 20.