Off and back on the pain patch

Managing the pain regulator

At my last meeting with the oncologist we decided I could begin to wean myself off pain regulation managed by the Fentanyl patch that trans-dermally seeped 25 micrograms of active agent through my skin every hour.

The week before, my treatment superintendent had suggested the best way to half the dosage was cut the patch in half before removing the seal, I had gotten used to having the patch work well beyond the 72 hour dosage time.

Or rather, I did not have any perceptible pain beyond the 72 hour patch wearing recommendation and probably that meant there were no indications of pain as I planned to discontinue the usage of the patch.

Coming off the patch

On Wednesday evening, I peeled off the patch and decided the pain management was over, some 36 hours after, I have had to reconsider that decision.

In addition to pain management, it would appear the patch with the attendant side effects was managing a few other things that gave me a lot of comfort that I think I have lost making me seriously uncomfortable.

It started with a chronic sickly salivation, I was producing so much saliva that I was spitting out quantities bordering on arrested nausea not manifesting as emesis.

The patch generally has a side effect of constipation whilst my general medication has dysentery to boot, at one time I had to take something to handle the constipation but my physiology had adjusted for normal bowel movement.

Without the patch, I suddenly had the runs accompanied with severe abdominal ache which last about 10 minutes allowing for bowel evacuation which seemed to dislodge the discomfort.

Back on the patch

In any case, I was very uncomfortable and sad to discover that the pain management probably masked other issues that would show up on discontinuance.

It would appear I have to be more gradual in withdrawing the pain medication to the point of the current half-dosage that I have for beyond the 72 hour range and then down to a quarter and hopefully with the adequate adjustment I can go off it completely.

I am not in any particular pain per se, but at the same time, I am willing to tolerate any pain like what I suffered for months even when dosed up on morphine and its derivatives, I also need to manage the discomfort because it helps to keep a fresh and comfortable state of mind.

So, the patch is back on the fatty but lean parts of my stomach wall and pain management is just a case of managing oneself off the need for medication much more gradually than a macho act of mind acting over matter and hoping for the best.

More chemo but not worried

The early bird, I was

It was exciting as well as the fastest time I have been in and out of hospital; it was all over in just an hour and much really was done.

My appointment was for 9:30 in the morning, which was early, I had to set my alarm for 8:00 AM and after 3 “snooze” knocks, I was up and out of bed in 15 minutes.

I had to get my wounds paraphernalia that is the Mepitel silicone film dressing, the absorbent material and the bandage. I have never said that the bandages are self-adhesive, the nurses love those bandages, it means they do not have to fiddle with sealing tape and there is no danger the bandage would suddenly come off.

Quick to the point

With the bus and the tram, I was in hospital by 9:23 AM and within 5 minutes I was called in by the doctor, the consultant oncologist is away in New Orleans on some peer junket as these very senior people and wont to and I have met this youngish affable doctor before.

I hobbled on my crutches to his office and chatted about my condition, the condition of the wounds, the sudden occurrence and disappearance of dysentery over the last week, the couple of time I was so nauseous I was sick in the toilet and my sometimes itchy hay-fever eyes which he thought might be related to the chemotherapy.

The doctors usually require a nurse to do the bandages, but I am already a dab hand at doing them myself, I wanted him to see the condition of my two feet in the hope that I could persuade them not to put me on another course of chemotherapy.

I got out my scissors and snipped of the bandages and he was quite impressed at the technique first and then the condition of my two feet.

Six courses were prescribed

The minor detail I did not have about my treatment was that normally for Kaposi’s Sarcoma six courses of chemotherapy are recommended – my heart sank, but for good behaviour, if that count he has written in my notes that maybe I be let off after the fifth – it would all be well, I am quite hopeful.

The fact was I thought an assessment was done each time to ascertain the efficacy of the chemotherapy before offering another course – you learn.

Immediately after that, appointments were made for Christmas Eve for another date with the oncologist and the Monday after Christmas for the fifth course of chemotherapy, the fourth course is on Monday.

The trick of a prick

They also needed to do a blood check which was quite an express service, I got my number, I was called and I did not have to wait be get to see the nurse, as I pulled up my sleeve the veins are glowing ready for the needle prick, before I knew it, the cotton wool was on my skin and we were ready to say good bye.

She hoped I had a wonderful day, I wished her a rewarding day which gets quite slow in the afternoons and she was going to be there until 5:00 PM.

When she mentioned the weekend, I hoped she would make the best of it and before I knew it I was talking about my guest from Stockholm who had contacted me through my hospital season blogs, who became friends and is now visiting.

The nurse also blogs about embroidery and I found myself giving her the address of my blog page, I hope I get to see hers if she leaves a comment on my blogs.

The compassionate priest

Then, one final thing, I had promised myself that on days without chemotherapy I would visit the catholic priest who came to my bedside when I was in hospital, so after he attended to patient, customer, parishioner – really what do you call someone who sees the hospital chaplain?

He invited me into his office, offered me a drink and we chatted at length about so many things, I kept in mind he had an appointment in 30 minutes and really, I do not want to take up his time on a seemingly social visit.

I however learnt that it is rewarding for the priests too to know that patients they have seen before are recovering well and though there are dangers of getting emotionally involved the situation is a priest cannot really be apathetic in their ministry which is one that should thrive on compassion.

The hospital parish

A hospital might well be a parish, but the parishioners do not have the essential quality of permanence as you would have in a local community, they come and go, they are old and new, they are ill or well and mostly every time, they are different.

One interesting insight in our conversation was about the professionalism of doctor that do not necessarily have to be empathetic and the caring nature of nurses who are involved in the everyday treatment and recuperation process – the latter do always get the chocolates or flowers but the former, go home sometimes with bottles of wine as gratitude from their patients.

My visit to hospital was no doubt very pleasant and fulfilling, it is however another wonderful course of chemotherapy on Monday again – Thank God always.

Laughter follows my hospital visit

Back to the hospital

And so I conducted my first visit back to the hospital yesterday under my own steam to have blood taken which would determine the next course of treatment, like additional chemotherapy or how else readings of my blood condition had changed.

When I was leaving the hospital two Fridays ago, I had promised the lady of 85 in my ward that I would visit her and so I bought some chocolates and quite a lot of chocolates for the nurses on the B.06 section of the hospital.

First, I got a blank card where with a thick felt-tipped pen I listed out the 14 names of the nurses and then thanked them for their care, compassion, concern and professionalism, addressing it to the wonderful and amazing nurses of B.06 OLVG.

Mobility by bike and crutches

It is easier to get around on a bicycle but I had to find out how to carry my crutches, I got a marker to mark the points at which the height and elbow grips are set and found I could collapse both crutches to just about 70 cm in length.

I then placed the crutches on the bike load platform which is over the back tyre and held them in place with two heavy-duty elastic bands with grip hooks on either end.

After that I was ready to go, that arrangement was just right, with enough energy, I could get anywhere and when there I could negotiate whatever I had to get to my destination.

Meeting with the nurses

The bloods were done in less than 20 minutes and forthwith I went up to Ward B.06 to see the nurses, this was well before visiting time – apparently the lady had left the Friday before, which was good though I felt bad about not being able to keep my promise.

Immediately, I recognised two nurses, in fact, the first one I saw was the one that gave me a wash, she was off to see a patient, and then I met the one who checked me out and gave her my gifts offering to bring in a Taibo exercise DVD if they felt they were being fed too many chocolates.

One of the doctors walked by the reception and instantly remembered my name, she was happy that I was looking well, and the nurses were grateful, gracious and appreciative, I just felt it was the least I could do and I think every once in a while, I would surprise them with something.

Then I went down to see the Catholic priest that visited me at my bedside, he was called from one of his rounds, we had a chat and again, I felt his visit was very useful and comforting for me and I gave him a little present and made my way home.

I took a long route which allowed me to meditate, sing and edify myself.

Laughing through the pain

Until yesterday evening, each stab of pain or chronic pain was acknowledged with a grimace, a contortion of the face, a grunt or some other reflexive action and I suddenly decided, maybe by inspiration to register every feeling of pain with laughter.

Bizarre, you may say but there is a reason why laughter is supposedly the best medicine, so I laughed through every moment I felt pain, my body being slow to play that game because naturally one defaults to a cry of pain, to purposefully overrule that with determined laughter even when you do not feel like it is interesting.

What I noticed was the pain was no more occupying my thoughts that much and within the 6-hour circle of pain medication where the pain begins to show up after four and a half hours, I have now been able to go 11 and 12 hours respectively between the medications for pain.

When the nurse arrived this morning, he thought the idea of laughter for managing pain was funny but as much as possible I giggled or laughed for the pain. He felt I should have one of my toes checked out when I visit oncology on Friday and he arranged that meeting.

Apart from a few areas where I sometimes need help, like shopping and doing the rubbish, generally, I am coping well at home and also recuperating quite well too.