The Pain and the Glory 

The Pain and the Glory

No news is not always good news. Recovery is not a straight line; pain is not predictable. Good things happen. Problems arise. The last few weeks in the land of Uncle Gilbert have surprised me. Healing takes longer than I thought. Road twists and bumps can throw you in a ditch. Now you know why I haven’t posted lately. I’ve had both challenges, and some great news. Together, they make up the pain and the glory.

Three weeks ago, I naively felt I was over the worst of Uncle Gilbert’s prostate cancer legacy. I got ahead of myself. After the first few relatively good weeks, I hadn’t expected particular setbacks. Uncle Gilbert’s damage came to haunt me since I last posted here. Perhaps he will always be a ghost, a reminder that he invaded my home, the body I live in, broke the furniture and fittings, until my surgeon forcibly evicted him, using several robotic arms. He must have been a great X Box player in his youth.

Robotic assisted surgery causes limited apparent post-operative bodily damage, compared to the old ‘unzip the front of you’ surgery that was once common and still used in some places. It is a less invasive procedure than the older form of surgery, but the NHS still describes it as ‘major surgery’.

Perhaps the six small scars on my torso gave me a misleading impression of the amount of disruption and change that exists underneath. The precision involved in this doctor’s work in controlling the surgery is remarkable. He must skilfully walk a tightrope, extracting just enough material from patients to remove the cancer without damaging surrounding organs. The concern about the approaching biopsy results adds the mental uncertainty, along with another physical pain problem.

To avoid DVT (Deep Vein Thrombosis) and clotting, the hospital gave me syringes of blood thinners after the operation to inject daily. I had to stick the needle in my stomach to deliver the thinners. In the hospital after surgery, I watched a nurse inject me twice to show me what I had to do. It didn’t seem too bad, but I was high on morphine.

The allotted time at home to inject was between 1730 and 1830. I came to dread the clock as it ticked closer to the daily deadline. Not just because the injection hurt. Before the operation, I was close to being phobic about needles, but with someone else administering it, I managed, grinned and bore it.

Injecting yourself is peculiar. I could never be a needle using addict. These needles hurt more than vaccinations. After two weeks of injections, I had a wide black belt around my middle from bruising. Sticking a needle into a bruise hurts. Finding a bruise free spot to jab the syringe in became difficult to locate. Once injected, the area pumped with thinner would be painful, sometimes for hours on end.

In my last post, there were more good days and fewer bad. The catheter had gone, and the pain had reduced. I made faster progress than some men.

My joy from walking outside soon faded with increased pain. Perhaps I increased the duration and ambition of my walks too quickly. However, seeing the bright autumn light play on the canal, and across the wide water meadow and river, cheered me. So I stepped up the painkillers and hoped for the best.

I tried to ignore Uncle Gilbert’s legacy and reminded myself each day how incredibly lucky I was compared to other men who have one of the big taboo issues. It is common after surgery to have incontinence. It can extend for several months, or even longer, for some individuals. Perhaps it explains a lot of the fear about getting the condition. However, I coped and stayed dry overnight from the beginning, and a week after catheter removal I was largely back to normal, with a few very minor leakages. Usually, provoked by a sneeze or a cough.

Before surgery, the prospect of incontinence had haunted me, but I had beaten Uncle Gilbert’s grim influence on this issue at least. I remain very grateful — a glory indeed — that I have escaped the worst of this indignity.

Pain distracts. Once it passes a certain tolerable level, it demands your full attention, breaks your concentration from more enjoyable activities. Nagging like some insecure boss or disgruntled workmate or partner, Uncle Gilbert’s pain prods your consciousness and saps your energy. Pain tires, makes you short-tempered, tense, and irritable.

After a few days of increasing discomfort, the hospital & GP reintroduced me to codeine on top of my large doses of paracetamol and ibuprofen, but the cocktail had less impact than previously. The pain worsened instead of improving. It was like a dull, continuous, uncomfortable vibration from heavy machinery buried in me. The thud of a large ship’s broken turbine that rattles through the entire structure, shaking it, night and day.

The large pill dosage made me feel doped, dead headed, my conscious life seen through a dank dish cloth. It was difficult to concentrate on tasks and made me restless.

Since April, I had asked five doctors, two GPs and three consultants about the pain’s cause. They all dismissed it as not being related to prostate cancer. It seemed odd. They didn’t explain what it might be. Eventually, in August after the diagnosis, a specialist urological nurse, who I had persisted in questioning about the pain’s cause, thought it might be prostatitis. A bacterial infection described by the NHS as:

‘Prostatitis is inflammation (swelling) of the prostate gland. It can be very painful and distressing….’

‘Prostatitis can come on at any age.’

The NHS has a long list of symptoms for it, and from April/May onwards, I increasingly had several of them, which included several for chronic prostatitis:

• pain, which may be severe, in or around your penis, testicles, anus, lower abdomen or lower back
• generally feeling unwell, with aches, pains and possibly a high temperature
• an enlarged or tender prostate on rectal examination

‘These symptoms can have a significant impact on your quality of life.’

During the summer, and after May’s initial diagnosis, I went to hospital for a local biopsy as part of the confirmation process for the diagnosis. Another consultant carried it out. This operation is done with you conscious, with little anaesthetic used. It involves a camera being stuck up your back passage to locate the prostate for samples to be taken with long needles. For me, the procedure was torture. The consultant abandoned the procedure, mercifully, before inserting the full camera or needles. It meant there were no samples. A month later, I underwent the procedure under a general anaesthetic.

Did undiagnosed prostatitis explain the extreme pain caused during the local biopsy? After the local and general biopsy were over, the pain and symptoms got worse. The lab tested the biopsy, and the surgeon who would operate in September confirmed my cancer diagnosis.

No test was done to confirm prostatitis, but they gave me a 30 day course of hefty antibiotics to take before the surgery. This medication reduced the pain a good deal, but it didn’t go entirely.

The pain escalated after surgery, catheter removal, and more exercise. I contacted a specialist nurse who said it was likely just the body healing process. A day or two passed, and I began to bleed a little. Concerned, and with no reduction in pain, I contacted another specialist nurse. She suggested I get a urine test to see if there was an infection. I provided a sample and waited.

However, before the test result came back, the surgeon, a considerate and genial man, called me. He had good news, saying ‘I’m very pleased.’

The biopsy indicated effective removal of the cancerous tissue. This update definitely removed some anxiety. Glory, glory, glory!

He cautioned me a PSA test would follow to check if the cancer level had dropped. A multidisciplinary case conference would review my results. I asked him about the pain? He said that it was probably still the body healing. It had been through a lot.

This young surgeon has throughout this process shown me the utmost kindness, courtesy, and empathy. I am very grateful to him and his skills. I can only thank all the nurses and hospital staff I’ve had help from long the way, for their skills, empathy and kindness.

Last Friday, I got the results from the urine test. It found no infection, which was good, although my pain had not subsided. Meditation helped. Sitting down made things worse. Walking outside helped if I didn’t do too much of it. The painkillers increasingly helped less, nor did they make me feel good about myself.

For me, the question remains, what caused the discomfort in the months before surgery? I struggle to believe the doctors did not see any relation between prostate cancer and the pain. The pain was on the left side inside the pelvis, where the cancer was later identified. If it wasn’t prostatitis, what was it?

This week I decided I would change how I dealt with the pain. Another good news milestone helped me redirect my efforts. The last injection happened a few days ago. After it, I breathed an enormous sigh of relief and celebrated with some wine. I approached the pain problem differently. Even I was surprised by how I did this.

If you want to read this whole blog from the beginning, please click here.https://northofmynuts.co.uk/take-action-to-i…ove-your-chances/

If you have questions about my prostate cancer story, please ask them.

Read more about earlier in my prostate cancer story here:

https://northofmynuts.co.uk/riding-the-post-surgery-bronco-of-prostate-cancer/

https://northofmynuts.co.uk/the-shadow/

For more information on the condition you can look at https://prostatecanceruk.org/