Chapter 26 — Don't Poke the Bear

2 minute read time.

I'll be honest — I've been avoiding writing this one.

Not because there's bad news. Quite the opposite. I've been superstitiously, irrationally terrified of jinxing it. Because as of today, the 20th of August, I have been out of hospital for three weeks. Three whole weeks without being admitted, without a dramatic blood result, without a midnight drip or an isolation sign or a junior doctor telling me results that belong to someone else.

I'm not going to make a big deal of it. I'm just going to quietly note it and move on before the universe notices.

Potters

The holiday was lovely. Not action-packed — we were all too tired for that, and anyone who's spent twenty-nine days in hospital followed by a calcium crisis and two days of emergency drips will understand why a gentle sit-down sort of weekend was exactly right. Albert managed to get an eye infection for the first day and a half of a three-day trip, which was peak Albert timing. Smile The traffic in and out of Norfolk was, as it always is, an absolute nightmare — six hours each way, which is a special kind of suffering — but the time in between was exactly what we needed.

The numbers

Since coming home, things have been slowly and steadily improving.

The liver — which peaked at 2,500, which caused emergency biopsies and scary conversations and twenty-nine days on a ward — is now at 70. Normal is around 34-50. Seventy. I keep saying the number because I still find it slightly hard to believe.

Blood sugar is being monitored — four readings a day, a new home monitor, an app tracking the pattern. Everyone thinks it's steroid induced rather than true diabetes, and the data seems to support that — fasting readings are essentially normal, spikes correlate precisely with when the steroids are most active. Being referred to my GP for ongoing monitoring. Extra medication to manage it in the meantime.

The main focus now is the steroid wean. Down to 64mg from a peak of 200mg — more than two thirds of the way there. The liver medication will hopefully follow once the steroids are gone. Then, probably September or October, a proper conversation about what comes next for treatment.

What's coming

I'm starting to do more. Slowly, carefully, but more. Getting back toward a normal way of life in small steps. Albert and I are off to watch West Ham at the weekend, all being well. I'm starting to think about getting back to work.

The treatment conversation — what happens next with the cancer — is still ahead. That's a September or October discussion. For now the focus is getting off the drugs, getting stronger, and letting the body find its feet again.

The blog is likely to go quiet for a while. That's a good thing. Quiet means nothing dramatic is happening. Quiet means the bear isn't being poked.

Don't poke the bear.

Madiso
  • Hi Phil

    So glad you are gradually stabilising. Some pieces of advice having also had serious issues on pembro. I know I have said some of these before but worth repeating. 

    1. Don’t try to rush the steroid wean. It will likely need a lot longer than you think. Your body needs to learn to make cortisol again and it has to be really carefully managed or you to develop bigger issues. I would be astonished if you are off them in a month or two. I initially expected a 19 or 12 week wean but turned into 9 months with the latter half of it struggling down the very tail. I started on IV steroids inpatient and then daily outpatient. Switched to 60 mg of prednisolone daily. Got down to about 15 over 3 months and then it became increasingly difficult. Once you are down in the lower doses the side effects (jitteriness, sleep problems, impact on taste) all settle. 

    2. Your blood sugars may remain a bit sticky. I still have pre-diabetes, which I didn’t have before. It’s more than 2 years since I got off the steroids. 

    3. Don’t worry too much about the cancer. You might be surprised at what pembro has done. It’s also still in your body for up to 3 years. Mine gave me complete remission alongside trying to finish me off!! 

  • Above should say 10-12 weeks