It appears to me that people generally find their journey through Hepatitis C treatment falls into a few different stages. Often the stages follow a well-defined path for us. Not all the time, but a lot of the time.
Let’s take a stroll down the path, shall we?
Stage 1: OMG!
This is the stage where you’ve been told you’ve been accepted onto the treatment. For those of us in countries where the latest direct acting antivirals are not available this often means being part of a clinical trial or a compassionate access scheme. It’s like winning the lottery, the HCV equivalent of Willy Wonka’s Golden ticket and frankly, about as rare! You can’t believe your luck.
You make a flurry of phone calls to family and friends, telling them of your great news, but also warning them not to get too excited
“Wait till I have the pills in my hand,” you say. “Then we’ll know it’s really happening.”
Stage 2: Waiting, waiting, waiting ...
You try not to get too excited as you still have months of waiting ahead of you and a battery of tests that could turn up anything, some of which could potentially deny you access. You carry your phone with you towards the end, in case that call comes through and you miss it.
Stage 3: And the Big Day arrives!
You’ve got the date, you’re sitting in the waiting room, your leg anxiously jiggling. You are called into the office and endure the battery of tests needed: fibroscans, ECGs, blood tests, blood tests and more blood tests. You discuss treatment protocols, what to watch for, when to come back. And then they put those drugs in your hands. This is it. The beginning of the rest of your life.
I remember being acutely aware of the value of what I was carrying around. I remember texting a friend and saying “I’m walking down Oxford St with about $30,000 worth of drugs in my bag!” Ever the wit, he replied “Well to be honest you’re probably not the first person to have done that, but yours are legal!”. I went straight back to where I was staying and locked them away.
Stage 4: The Journey Begins
There you are. Pills in your hand. If you are not on regular medication, you might find this period takes some adjusting to. It’s the time when you need to work out how you’re going to approach this logistically.It’s all a bit overwhelming but it, too, passes and everything becomes second nature. You feel a burst of energy. You are on top of the world. This is it. You’re on your way.
Stage 5: Side Effect Tsunami
(Or, if you are lucky, tiny side effect waves with sparkling foam and frolicking dolphins)
It seems that a lot of people are hammered with side effects around Weeks 2 and 3. I was. If Riba is involved, this is often when it raises its head and has an effect on your haemoglobin levels, less frequently your bilirubin levels, and people report nausea, skin conditions, headaches and fatigue. Other drugs may have other side effects, but I speak to the drugs I know: AbbVIe’s Viekira Pak. With bonus Ribavirin if you are really lucky and have already hit the cirrhotic jackpot. But if you are having week 2 blood tests and they come back with some positive news, it really puts a spring in your step
Stage 5: The New Normal
In this stage, you have adjusted to the schedules, tests and meds and have worked out your strategies for managing most things. Often it’s trial and error - what works for you might not work for the next person. Your side effects are part of your life, or have died down and are not causing you many problems. It is what it is. Right now, you live for your test results. They are often the only tangible evidence that the slog you are going through is worth it.
Stage 6: The Grind
This is the “when the hell will this all be over” period. You’re past half way, the end is in sight. But it’s still a way off and you still have a few weeks to go. Perhaps you’re cranky. Perhaps you’re getting tired. Perhaps you’re just sick of the “every day a hundred and fifty million pills” feeling. What ever the reason, you need to do what you can to get through this rough patch. Do what it takes, because you are so very very close to a future without Hepatitis C.
Stage 7: The Final Sprint to the finish line.
Or stagger, as it so often is. Hopefully you are approaching the very thing you wondered if you would ever live to see: SVR. The days, weeks and months that this has taken is coming to a close. It’s so close you can almost touch it. You become increasingly impatient and just want to get it finished. Every day you take another pill (or 10) is one step closer, but it seems like that finish line is always just out of reach.
Stage 8: Completion, or Yay, you did it! You’re awesome!
Done. Done, done, done. You might want to throw away every trace of your treatment: the pill bottles, the schedule, the Little Old Lady (tm) pill box. Or you might be a sentimental sap and keep them to remember the good times. Maybe this is a nice time to spend some time regaining your strength, energy and emotional wellbeing. It’s been a long, long road. Look after yourself. You deserve it.
And you wait for the final phase: SVR12!