Last week I sat in front of my rheumatologist and heard words I never thought I’d hear: “We’ve done everything. Chemotherapy hasn’t worked. There’s nothing else I can do for you.”

… Excuse me?

Over the past five years I have been prescribed more medications than I can possibly recall or count. I have tried designer biologics, steroids, anti-inflammatories, even offlabel antidepressants. And then in the past six months I have been receiving chemotherapy. This was the end of the line; the nuclear option.

Not many people know that chemotherapy is used to treat anything other than cancer. But it is effective for many autoimmune illnesses because it suppresses the immune system’s desire to attack itself. Which is why it’s dangerous, and therefore the last line of defense.

I lost my hair, I dealt with the nausea, I dealt with the depression that results from chemotherapy treatment. I pushed through. I pushed hard.

None of it mattered. My body has refused to respond. The results, if any, I was getting from the treatment were superseded by the risks and side effects. So, it’s time to stop the poison.

A part of me is filled with relief. A bigger part of me is terrified.

My disease is for life. And I’ve just been told by my specialised doctor that there’s no other options for keeping it under control.

Well – there is one option. An option that provides medically proven pain relief, and little to no side effects.

Can I have it? Not without being a criminal.

Today, the government has announced it will “allow terminally ill people to smoke cannabis without being criminalized.”

I was expected to be disappointed by the bill. We’re at the start of a long journey here. But it’s just so weak.

Along with excluding people with chronic conditions – you are only allowed this if you are dying, not if you will be in pain for the next fifty years, which is a bizarre distinction to make – it focus bizarrely on the smoking of cannabis. Not only is this not the most effective way of using the medicine, it paints users in a negative light. People are less likely to be sympathetic to the idea of someone smoking a joint and getting high, than they are of them using a manufactured edible product that gives pain relief without the same psychoactive effect.

I wonder if this is because suppliers will not be allowed to manufacture products, but only supply the leaf? They’re only allowed to do so with a doctor’s script, but how can a doctor prescribe a product that’s not standardized or regulated? What will the scripts say? Two tinnies, to be smoked as xx joints over the period of a week? I’m snorting out loud here.

I don’t think for a second that this isn’t a good first step, and it is great that people with terminal illness might get access to something. But I’m not sure exactly how they’ll be sourcing it. Meanwhile, “legitimate” cannabis products remain inaccessible due to cost and Ministry of Health processes.

And what of people who are already in the system? Nelson’s Rose Renton was arrested two months ago for this exact practice – supplying medical cannabis products to people in need. Her case is still before the courts. Will it be thrown out?

It’s demoralising, honestly. To know that there is something that could help me, but politics is keeping it out of my hands.

All I want is to be able to go into a pharmacy, like many people do around the world, and give them a script for a product I know is regulated, standardized and safe. I don’t want to be a criminal just because I need relief from the pain that has eluded every other legal option.

Would the state rather I take large amounts of the opiates everyone says are a dangerous epidemic? I get a script for those no question – because my doctor knows I am responsible and that I just want pain relief, not a substance high.

That’s what this whole thing should be: a medical decision, not a political one.

The sooner, the better.