I’ve woken up this morning with butt pain where I’ve previously enjoyed the services of a rather unfriendly tumour.
It’s unpleasant. I’m trying to avoid using opiates because they contribute to constipation and drowsiness. Inevitably they will be in action tonight.
It’s four weeks since my last chemotherapy and, because this pain was present at the time of having my scan last week I assumed I’d be told chemo is no longer effective.
The scan shows stronger bones, which amazed me as I’ve been feeble as hell since the weekend before they pictured me. It showed no spread in the primary sites of lung and bone. My butt thinks otherwise. There is, however, an area of doubt. My neck lymph nodes are swollen. The scan doesn’t reveal cancer but it’s a new area of doubt.
The recommendation is biopsy under local anaesthetic to decide the facts. If the biopsy is negative, continuing chemo is the plan. Positive and I have a sample that can be shared with drug trials. I also got confirmation that the NHS will soon be able to prescribe the hew immunotherapy drug. Slightly odd, as NICE have already gone live with the instruction to prescribe. But as chemo has to have ended we will save that argument for another day. I think Oncobabe and her pharmacy are reading out of date bits of the NICE web site.
Effectively, I’m going to have a two to three week run of no treatment against my tumours, other than painkillers. Biopsy. Medical meeting. Next steps. That’s quite worrying when you wake up in pain. But I suppose I’ve carried this butt pain on and off for a couple of years. Hopefully a bit longer from recurring won’t be too bad. Maybe, if it worsens, radiotherapy can be used to zap the unwanted visitor. I’ll need to be pro-active. I always need to be proactive.
In summary, while doubting some of the scan findings, it’s put me in a batter position. Chemotherapy and the new immunotherapy drug that I keep forgetting the name of are both options still open. My guess is the latter will come into play. And despite the invasive nature of a biopsy, that gives the Matrix Trials something to work with which could mean treatment alternatives once I’ve exhausted the NHS options. And who knows what else could yet become NHS mainstream.
It’s all about adding extra months. Despite uncertainty and an invasive procedure to come, I feel more positive despite the butt pain that starts my day.
A day that sees me head to Bradford for a chat about options for my deaf ear. Free car parking for my blue badge the highlight, and a medical rarity, of my third NHS day out this week. That little wave of positivity is helping to mask the tiredness caused by lung cancer and ongoing medical appointments.