They talk about The Lost Weekend, but June turned out to be The Lost Month. For the first 4 months of this year I was adapting to what I called the “New Normal”. Lowered lung capacity and more weariness, but otherwise fine and living life adequately within the new constraints. Around the time of the CT scan in early May things were developing badly. The vocal cord and bladder issues were becoming prominent. Even then, I saw these as requiring minor ops and procedures that I called the “running repairs”.

Everything was fine on June 11 when I had my final meeting with the Royal Marsden and officially ended the drug trial. My main question was about the cause of the bladder problems. The CT scan report said it was most likely due to “disease infiltration” and the doctor confirmed this with a nice drawing of the kidney/bladder with a bit of jagged shading across the urether. Words used are never as specific as you’d like, but the clear inference is that the jagged shading is a growth, and likely to be cancerous at that. The referrals to Urology had already been made, so that was that for now.

Mind you, the CT scan said vesico-urethuric which is more where the bladder joins the urethra, so he was scratching shapes in the wrong place. Never mind.

The day after I went to work but started to feel weak and unwell in the evening. I spent the weekend in bed and developed a nice high temperature. It never decreased and by Wednesday I was in A&E. They admitted me around midnight and kept me in for 3 days, pumped me full of i/v antibiotics and fluids and then let me go home on the Saturday. I stayed in bed for the weekend and generally felt the infection had passed, even though I was still very weak and not feeling quite right. But by Monday I had a pain in my side roughly where the kidney goes down to the bladder. This time it wasn’t out of hours so I called the Cancer Assessment Unit – they told me to come in. More CT scans were ordered and the pain progressed to worse as the day passed. The day may have been passing but my piss wasn’t – I had a swollen bladder and it was getting worse. By the evening I was back on a hospital ward (same one) and had to be drained pretty urgently. It was the remarkable event of the times. They took around 3 litres from me in the first couple of hours. Doctors and nurses from far-away places came to stand at the end of my bed and express wonder. The likes of it may never be seen again.

Once again I was discharged. Only now, Papa’s got a brand new pigbag. I think that’s a minor improvement on those nappy pants. They have such bland brand names like Moments or Depends, but I like to call them BigBoi PeePee Pants™.

At home, I had a call from my Cancer Community Support service. They’d lost their funding and are closing at the end of July. Was there anything they could do for me in the meantime? The answer was no, nothing immediate, so I thanked them for their help in the past and wished them well with new jobs, etc.

Clinic appointments have started to arrive in profusion and I still have plenty more to come. While I was in hospital I was wheelchaired to an ENT appointment. The consultant agreed to do the vocal cord bulking and it is now only a matter of when. Probably some time in August. He was unsure about the current state of hospital appointments and could not commit further than that. Next up was the Oncology consultant, a few days ago. “What do you need from us” they asked me. Some advice on who to turn to for primary care if/when I get another infection was my first wish. Regular CT scans every three months to monitor the progress of my tumours was the second. “Your GP” was the unsatisfactory answer to the first. But at least I can work from there to get referrals to Hospice, Macmillan nurses, etc. They were surprised by the second request – most people don’t want to know, it seems, but they agreed to play along. Yesterday I met the Urology consultant. We have a four-step plan that will probably end in surgery to re-bore the prostrate, after some drugs and tests. Interestingly, he expressed the view that the blockage was not cancer-related. Just one of those things that happens, although the onset was very sudden in my case.

So, two operations for me in the next few months. And that just to get out to the other side, to what I envisage as a sort of plateau of normality. It will be the newer “new normal”. My present is as Brian Eno put it: the long now and the big here. It’s not a present I would like to last longer than necessary.

A “rouse” is what a bird does when, standing on a branch, it fluffs up its feathers and then shakes them all back into place. I would very much like to rouse myself. I would so like to have energy again. This is like a foretaste of how it ends, and now I’ve tasted it I’d like it to go away.