Today was my 3-weekly oncology review and crunch time on whether I can finally come off the steroids. I haven’t been feeling good for the last few weeks. Aches. Stiffness. Headaches. Feeling tired and listless. Sometimes feeling slightly queasy. All of these are possible symptoms of adrenal insufficiency and a possible clue that my adrenal glands are not waking up as well as I had hoped. They might just be struggling after 8 months of steroid enabled shutdown, or they might be another casualty of September’s immunotherapy checkpoint inhibitor related flurry of immune system friendly fire. Either way, I constantly feel as if I am wading through treacle. Haven’t really had a good patch during the ladt 3 months, as recovery from liver ablation was followed by gout and then followed by this.
I suffer from the general British thing of downplaying how I feel. If anyone asks, I am well. I realised I have probably been guilty of underplaying my symptoms to oncology, not least in part because I have spent months desperately working to reduce the steroids so I could eventually get off them. I had mentioned my issues in passing 3 weeks ago, but not really laboured it. So I.decided to lay it on a little more thickly this time. Oncology were in listening mode, possibly because I am usually very upbeat. Possibly also because there has been a slight decline in kidney function on the current alternating day at 1 mg, day off regime. Plus I am going on holiday in early June and don’t want things to get worse.
The new (to me) registrar picked up well on my concerns and went through an extensive list of possible symptoms. Agreement was quickly reached that I should stay on the current dosage for now, and possibly through my holiday. That I should get an early morning blood test in a couple of weeks to specifically check cortisol levels. That, if that shows a problem, I will be referred to endocrinology. I know where to find them, having had previous encounters when they checked out my adrenal “incidentaloma” and found it to be benign.
Meanwhile I have an appointment for my post-ablation scan, on 29th June. Actually I ended up with 2 appointments, as both oncology and the interventional radiologist had made a booking. So I will return from holiday in mid June to learn whether or not the ablations were successful, and whether or not my adrenal function stands a chance of recovering. It’s a long and bumpy road but hopefully things will improve. I had to laugh today at watching our PM declare a general election in the pouring rain, with a protestor playing D-ream’s “things can only get better” sufficiently loudly to almost drown him out. Hope so for the country and for myself.
