21st October “Forward, the Light Brigade!” Was there a man dismayed? Not though the soldier knew, Someone had blundered. Theirs not to make reply, Theirs not to reason why, Theirs but to do and…” ‘Charge of the Light Brigade’ Alfred, Lord Tennyson

Was it Brigadier Airey, Lord Raglan, Captain Nolan, or the Earl of Lucan? Famously, no one knows who was responsible for the deaths of the 600 that day at Balaclava. All that is known is that it was caused by the result of vague, or mis-, communication.

My plight hardly compares to those brave (foolish?) men who rode into enemy canon, but miscommunication seems to be my lot on this cancerous journey. My journey seems to have been accompanied by people bringing Vinyl LPs to play on their iPods.

The propensity for miscommunication seems to be almost pathological. From the first moment of my diagnosis, ooops, “slipping-out”, along the shall-we-shan’t-we send him home hospital road, culminating in today’s tour de force of Balaclava-esque balls-ups.

Several weeks ago I had my last chemotherapy session. I had my picc line removed and was handed my drugs. “Who do I see now?” I enquired. The nurse said “no-one”, and kindly opened the door of the chemo ward. I stood there in the corridor armed with my bag of pharmaceutical goodies, a newspaper and a bewildered expression. There are few moments in my life I have felt quite so exposed and unsure. “Is that it ?” I wondered. No discharge letter. No ‘What happens next?’ leaflet. No meeting with a professional. Just the exit.

Throughout the treatment you are cared for, and equally importantly, you have a function, a role, something to do, to aim for. Now it was nothing. To not acknowledge this potential and real vulnerability in a patient at the end of their chemo treatment, stuck me as pastorally negligent.

A few days later, after several telephone calls, I managed to make contact with my support nurse, and, thus, was able to find out the answers to such seemingly esoteric questions as, “which chemo drugs do I stop taking, now I’m not on chemo?”, and “what happens next?”. 

What happened next was a PET Scan to establish the size and activity of the lymphoma. Bizarrely, my consultant’s appointment, to relay the results, was before the scan. Again, I rang them to suggest a more logical course of action would be to have the appointment after the scan. Good thinking Batman, give him a MD.

This was duly arranged for three days after the scan. A few days later came a text saying the appointment had been cancelled, “apologies for any inconvenience”! After yet another telephone call to find out what was happening, it was noted that three days was too soon after the scan. It takes “three weeks to process the results”. THREE WEEKS?! “Well that’s the official line”. “Really?!” Ok, it was conceded, a more realistic date was amended to 27^th October.

Imagine my joy when this morning a charming woman rang me to tell me a colonoscopy had been booked for the 2^nd November.

Thankfully, I have learnt to sit every time my mobile rings and bares the legend: ‘NO CALLER ID’, for that is the hospital’s nom de plume. I explained as calmly as I could that I knew nothing of any colonoscopy, whilst all the time thinking, what have they found that warrants, ‘cameras to the left of me, cameras to the right of me, rode what feels like the six hundred’ up my “mouth of hell”’? After apologising profusely for the distress she “may”(?!) have caused, she vowed to get “to the bottom of it”. Not even that appalling, unintended pun managed to raise a smile.

I immediately rang my consultant’s PA and demanded to speak to him asap, sharing what had just happened. The call came back within five minutes.

Basically, the PET Scan revealed tissue in the offending area of c5cm. The ‘activity’ was significantly reduced, but above ‘normal’. Therefore, they recommend that I have a colonoscopy to hopefully get a useful biopsy. However, he and others are not optimistic as they think the tissue is basically dead material or scarring rather than lymphoma. Yet, there may be some lymphoma so, I need another PET scan in 2 - 3 months to see if there’s any change. So… 
If it is the worst-case scenario I will need a bone marrow transplant. He was more upbeat than before, which isn’t saying much —I have buried more effusive people.

Still smarting from the latest miscommunication, compounding the fear of the vulnerable, I and Sarah stressed the need for change; “someone had blundered”, again, “It really is, no way to run an army”… oh dear, gulp, maybe it is!

“All the world wondered… Shattered and sundered.”