Everyday people on chemo

Slowly up from sleeplessness

The day started quite slowly for me, I did not sleep that much overnight, so it was dawn before the winks really set in.

But then, one wanted to wait up for the 07:00AM drug intake but slept past that time to just after 09:00AM. Naughty!

Soon afterwards the neighbourhood nurse arrives just before eleven to dress my foot which he now felt was looking a lot better, even I was not feeling as much pain, partly due to the absence of most of that necrotic tissue and the new pain medication.

When I finally got out of bed, I had enough time for breakfast then decided to take my own flask of Smoky Earl Grey tea, sugar, milk and my own mug – sometimes, what you want to be just so has to be made so by what you do yourself rather than rely on others to do.

A full house it seems

My friend had offered to escort me to hospital, which gave a very welcome feeling, especially if one were to feel a bit weary after treatment.

We took the public transport route and we were there in just 17 minutes and were 5 minutes in time for the 14:00 appointment.

Gosh! The out-patient chemotherapy room was a full house, all seats were occupied such that I was asked to wait about 5 minutes – I pretended to swoon which made everyone laugh or giggle at my antics – a pleasant way to say hello to everyone.

I took an ordinary seat and waited, browsing through my Economist magazine without much concern for whatever else was going on.

In just about 10 minutes a seat was vacated, cleaned up and available for me to use, I got in and before I had the needles stuck in, I had poured myself a cup of tea and had sipped half the cup.

Needles in everyday people

Looking around everyone in the room, they were everyday people, not many that much older than I was and hardly anyone looked sickly or incapacitated – we had all come from some place for this treatment that lasts probably an hour or two and then we would return to our abodes like ordinary people. Nobody had an “I am on chemo” sign stuck on them; they would have had to say so to be identified.

I usually like to have the needles stuck in my left arm and I look away towards to the right, since I am right-handed, it is good to have the right hand free for a pen on Sudoku. However, when I was in for the bloods last week the nurse insisted on using my right arm when I offered my left, so this time, much as I preferred the left arm, I allowed it to go in my right arm.

The saline drip was first attached then after confirming my date of birth which I hesitated to recall the Caelyx medication was attached, apparently, I am the only one with my kind of treatment, wrapped up in aluminium foil and timed to finish in an hour.

Infusing or extracting

In fact, not everyone was being fed intravenously, there were others having fluids drained out of them from either the chest or the abdomen, I did not find out if that was a kind of venesection, but the lady beside me gave up a good 6 litres of fluid which immediately went into the special bin, so none of that was for analysis.

As the hour passed, I had downed 3 cups of tea and had a wafer donated by one of the out-patients then the intravenous drip system beeped that it was running out of Caelyx, the system was then adjusted to flush the rest of Caelyx through the tubes into my system – that was easy to observe because Caelyx has a reddish colour.

Metal access but plastic endures

When it was all clear, the needle was removed and I was surprised to see that the insertion process was with a metal needle but that was retracted at the start to leave a plastic needle in the vein, then I understood why it looked flexible towards the end of the treatment – I must say there is a lot of ergonomic development on medicine delivery systems.

Soon, we were ready to leave, I felt strong enough to brave the public transport system and it was interesting to see this young man literally run into me trying to get on the tram first without due consideration of someone with crutches – when I remonstrated with a loud, “Excuse me” he caught himself and said sorry.

Getting home was without much event and that was my third course of chemotherapy completed.

Stronger medicine and another course of chemo

Mostly in bed

So far, I think I have spent a good deal of time in bed, half-exhausted but not necessarily weak from what I might term drug-induced lethargy. A number of my pills have a drowsy-inducing tendency that interacts with each other, all of which I have to take note of.

I was with the oncologist on Friday, and in what should have been a 30-minute meeting, I saw him, then the surgery and finally the radiologist, a long 4 hours in the hospital; that could take a bit out of you.

The pain of necrotic tissue

I did not feel like using public transport, so I called a taxicab because I was still in some pain; I was also wearing my new shoe, which offered all the comfort I needed for my foot.

The pain was evidently due to the necrotic tissue that was keeping the healthy tissue from breathing and healing because those areas were producing putrefying pus and were prone to infection.

The neighbourhood nurse had grown quite concerned about it and did not like the idea of me picking off bits that seemed ready to fall off.

Double the patch

When I met the oncologist, he was a bit surprised at the area of necrotic tissue. He thought the area had increased, but my view was that the tissue had been dead for weeks, and it had now reached the stage where it was obvious and ready for removal.

When I told him I was still on the painkillers in addition to the Fentanyl transdermal patch that was easing 12.5 micrograms into my skin every hour, he felt the dosage had to be increased, and he also thought he should prescribe antiemetic drugs.

In addition to this, the neighbourhood nurse had recommended that I be on anti-constipation drugs too because this kind of medication could cause severe constipation. All these interacting chemicals.

I was already on antiemetic medication, but Friday morning, I was unusually sick, retching stuff that was not in my stomach but wanting to come out. I did remember when I was in the hospital after a few days of using a patch, I could not keep anything down, but no one recommended an antiemetic then until the second round of vomiting, at which time I was switched to another medication.

I have now increased my use of the suppositories, which I used to take just half an hour before meals, but now, just about every 6 hours – there is just no comfort in vomiting, no matter how well you feel soon afterwards.

Whilst I got the new prescription, I allowed the patch I had on to run its course of 36 hours before applying the new patch on Sunday night. I sometimes have an itch, but have to be careful where I scratch because the penultimate patch medication on the original dosage almost fell off after unconscious rubbing. I wondered for hours why I was in pain, and it was because the patch had no contact with my skin again.

Another course of chemo

The oncologist, on learning that the Internal Medicine Consultant was happy that I was responding well to the chemotherapy, recommended I have an additional course, something I really wish I did not have to endure any more, so stoically, I will visit the hospital today for my third course.

Then he arranged for me to see the surgeons who spent a good deal of time inspecting my foot and then recommended snipping off all the necrotic tissue and taking a new X-ray of my foot.

Snipping at the dead tissue

They had two pairs of surgical scissors, and whilst they were sorting out other requirements, I got on with the job of cutting away loads of dead skin, but the surgeon, when he arrived, was a bit displeased even though I remonstrated that I knew where the pain was and how best to get at the bits based on my feeling of the pain.

I stuffed my mouth and bit on a thick wad of paper towels to manage the pain and looked at what he was doing. It did not help much, so I lay back and allowed him to just do it. I was in such pain and tears by the time he had finished, I would not let him do any more afterwards.

However, a good deal of fresh tissue had been exposed, which should dry up and heal over nicely over the next few days. I was quite happy with that.

At the radiologist's, after stripping off all sorts of things, my foot was placed in 3 different angles for the X-ray, and it was time to return home.

I stopped off at the chemist to get my new 25 micrograms/hour Fentanyl transdermal patch, commonly known as Duragesic and just fell into bed the moment I made it through the door and had my mid-afternoon medication.

My left foot

Door-to-door transport available

I was back in hospital again today to do two things, the main appointment was to get my new shoe and the ancillary one was to have blood taken for tests.

Thinking through how to get to the hospital without using the landau of unnecessary ostentation, I found there was door-to-door public transport from my home to the main entrance of the hospital, with a very convenient change-over half-way through the journey.

After a few checks on the local transport times, I got the bus and changed to the tram without having to stop for long arriving at the hospital some 30 minutes to spare before the shoe appointment.

No appointments are required for the blood giving exercise, you arrive, take a number and you are processed, pricked and your venesection is complete in less than 15 minutes.

No foretaste creates low expectations

I then went to the Orthopaedic section and waited as the appointed time came and went, I did not get seen for another 35 minutes, in which time I had buried myself in a Sudoku puzzle and read a few articles in the Economist.

In this experience, I can say never have I seen the greater need for a clear idea of what you will be getting just as for a house you see plans and models, for machines you get prototypes and for curtains you get colour cards and all the matching stuff to help you in informed decision making.

I received no such thing regarding my orthopaedic shoe such that the shoe I was fitted with last week did not get a glowing review at all, I was planning on rejecting the shoe today such that I had painfully shoe-horned my foot into one of my wide but regular shoes to prove a point.

I really should have been given an idea of what I would be getting, I was pleasantly surprised. But it shows how without a foretaste you can end up with extremely low expectations.

I really like it

Apparently, what I wore last week was prototypically to model the wearing and fitting to the real shoe, especially the shoe inlay which was to bear and distribute the weight underfoot with due consideration of the painful but healing lesions.

So, out came this boot, the inlay first tried out on my foot then put into the boot and I put on the shoe, it got all laced up and pulled to fit and there we were, a shoe that looked like it was begging for a partner shoe to make up a pair.

Black, thick felt, moulded to my own foot, bespoke and wearing well, but just for my left foot.

It fits well and I have offered a slideshow of the shoe and inlay here, pictures can do the rest of the talking.

My Shoe Slideshow on Flickr

Nigeria: FOI Bill languishes in myopic ignorance

Breakfast at Café Beaubourg

It is quite strange that anytime I am in Paris I have my breakfast at Café Beaubourg [1] which is just beside Georges Pompidou Centre [2]. It is a bit expensive, but I take a table on the 1^st floor with a view overlooking the grounds in front of front of the centre and watch the world go by as I tuck into the grande brunch, half watching, half meditating.

I have never been in the centre ever but I bring an interest quote from Georges Pompidou who was the president of the Republic of France from 1969 to 1974 and in what smacks of republican mirth the President of French Republic is also holds the title Co-Prince of Andorra [3].

Pompidou on politicians

From the Collins Dictionary of Quotations (1995) because somehow the web had failed to document and attribute this to the man, he says, “A statesman is a politician who places himself at the service of a nation. A politician is a statesman who places the nation at his service.”

I must observe than when applied universally to the context of statesmanship in Nigeria, there is none of the former; all our politicians place the nation at their service.

FOI Bill going nowhere

This is exemplified in the non-passage of the Freedom of Information (FOI) Bill which has languished in the legislative and executive annals for the best part of 10 years. It was passed by the National Assembly in 2003 but the then President refused to grant his assent to the bill.

So, recently, at a World Bank Training Forum for Journalists a representative of the National Assembly Ahman Pategi (PDP/Kwara State) suggested the bill may not pass in this parliamentary term [4] which ends in 2011.

Interestingly, the chairperson of the Economic and Financial Crime Commission, Farida Waziri has urged the National Assembly to speadily (sic) pass the NOI bill [5] {Come on NeXT do some proof-reading and spell-checking} suggesting the “need to put in place a conscientious system for the gathering and dissemination of information.”

She almost misses the point just as the politicians are utterly myopic if not ignorant of what an FOI bill provides. They have concentrated on the premise that the bill will give journalists untrammelled access to all sort of information most of which would expose their personal nefarious activities rather than hold them accountable to public scrutiny for the supposed service they are being paid to offer as a dividend of democracy.

Not just about journalism

Indeed, the bill was originally sponsored by representatives who were once journalists but that should hardly be the core of the bill or the root of the fears of the politicians, we already have guerrilla new agencies as Sahara Reporters [6]and PointBlankNews (Caution: Gruesome graphical content) [7] who get all that information anyhow.

People do read mainstream news channels and also review the guerrilla sites to get a general feel of what is going on, the non-passage of the bill will not stop the outrageous, sensational and downright deplorable from being published.

Editors have condemned non passage of information bill [8] with a whole range of statements expressing disappointment, but the issue is very simple.

Dummies guide to an FOI Bill

A FOI Bill requires that all official and government business be properly documented and archived in some generally accessible manner. When documented, each branch of government starting with the legislature which enacts laws of archiving and access, the executive should have a set of security classes for the documented information and levels of privilege necessary to gain access whilst the judiciary can adjudicate as to whether a request is legitimate or not.

This extends the remit of democracy where any legal citizen or interest group can request information regarding the working of our democracy which sometimes might involve activities deemed to be inimical to good governance or corrupt activities which need to be brought to light. It is definitely not a Freedom of Press Bill, which has completely different objectives.

Fear Not!

Like we are always told by our politicians when debating privacy bills, they who have nothing to hide should have nothing to fear, it goes without saying that politicians who have nothing to hide should really fear nothing of the FOI Bill, rather they should see it as another channel for making democracy more accessible to the electorate.

It would be remiss of me not to mention the Re-Branding Nigeria exercise in this context and inform the Minister of Information that if she really wants a laudable cause to bolster she ever decreasing stature and respectability, this is one bill she should latch onto and push through the National Assembly before 2011.

But, if politicians think the nation is at their service, well, we might well continue to pay them to feather their beds and self-interests as they have so successfully done all the time.

Sources

[1] Café Beaubourg

[2] Centre Pompidou - Art culture musée expositions cinémas conférences débats spectacles concerts

[3] List of Co-Princes of Andorra - Wikipedia, the free encyclopedia

[4] N-Assembly won’t pass FOI Bill, says Rep | Vanguard

[5] Waziri urges speady passage of FOI Bill | 234Next.com

[6] SR Headlines – Sahara Reporters

[7] Pointblanknews, just the news

[8] Editors condemn non passage of information bill | 234Next.com