Photons on the Prostate - X

The faulty waterworks

Just a week after I concluded radiotherapy for malignant prostate cancer, I was back at Christie Hospital to pick up an urgent prescription. The lingering side effects of radiotherapy are the fatigue that I have managed to varying degrees dealing with insomnia, strength, and ambulatory performance. It is the bladder and urinary issues that present the greater challenge and as one nurse politely put it, my waterworks.

The issue I described of having a kettle filling my urinary tract with boiling piss was described to my understanding by a cancer support nurse yesterday. Besides the prostate inflammation that could constrict the urinary tract, radiotherapy could also irritate and inflame the inner lining of the tract and that is what I am feeling as a burning sensation anytime I have the urgency to pee and when the bladder does not fully empty after any attempt to pee.

Hotline for hot piss

By last night, it was beyond tolerable and quite unbearable that I had to call the Christie Hotline for help. After describing the symptoms and the utter discomfort, I was given some advice to take painkillers which are generally anti-inflammatory too, that seemed to ease the discomfort and even eliminate the possibility of a urinary tract infection.

My notes were forwarded to a doctor who called this morning to assess my condition and prescribe some medication and palliatives to help with the waterworks.

Two things might also become an impediment to going out: the sudden urgency to pass water and the frequency at which that happens. At the hospital, in the space of an hour, I visited the toilet thrice.

Vulnerable in stride

Then, on my way home, I got the bus and when I alighted, I was about 300 metres from home when I thought I was going to wet myself. I was not going to make it home on time just as I saw a young man entering a student apartment block and I appealed to him that I had a toilet emergency. He ushered me to the disabled toilet, and I could not wait to get the business done. The compelling urge is literally impossible to control.

Before my treatment, I could hold water for hours, now, it is a matter of minutes that I have ordered a Just Can’t Wait Toilet card that hopefully grants sympathetic access to toilets when I am out and about. Along with that, I have ordered a Radar key to give access to public disabled toilets.

Coming to terms with the fact that the diagnosis, treatment, and ensuing symptoms together constitute a disability is something I am having some difficulty with, but the truth is these are vulnerabilities that would subside. For the duration of the issues, one should avail oneself of all the help available to ease the discomforts and pain.

Blog - Photons on the Prostate - IX

Blog - Men's things

Thought Picnic: On the politics of adversity and the expectations I refuse to respect

Exemplary beyond words

I was listening to a BBC Radio 4 programme last night titled No Triumph, No Tragedy presented by Peter White who as the Disability Affairs correspondent of the BBC was born blind.

He was interviewing Melanie Reid who in 2010 suffered a fall whilst horse riding and the injuries sustained turned her into a tetraplegic. There were so many things she touched on the subject of life-changing adversity that I could relate to, that I thought I might write something in relation to my experiences.

One particular phrase she used was, ‘The Politics of Disability’, which I understood to be a particular thinking and mind-set that appears to create a community of people with a common experience and agitates to maintain or set a standard for how people in that setting should identify, project, speak or advocate.

The pressures to conform

As a tetraplegic and her stubborn desire not be defined by that condition, she had come against some opposition from others in similar situations who expected her to more accepting of her situation and a more vocal advocate of rights, positions and policies to serve that community.

Whilst, I have had my share of adversity and none as serious as the principals I have heretofore written about, the concept of politics is even broader than that of disability. It covers such areas as the medical, the economic, the social, the cultural, the religious and the familial dimensions of the person, their community and their society.

When you consider race, sexuality, long-term conditions, survival from cancer, attendant chronic conditions and adversity, there has always been some perception and thinking one has had to prevent from encroaching into what is essentially one's own personal story which is not entirely unique.

Expectations I refuse to respect

Yet, I find that from all those apparent groupings that have their loosely agglomerated communities, there are expectations and demands. That I am black, I am expected to identify with a political slant without questioning else I am a sell-out. That my sexuality is a private and not a subject for public discussion, I am considered either lacking pride or courage for who I really am, whereas, that is just part of who I am and hardly the whole.

Other matters on the issue of disease and the management of it, we've had cancer which in some cases is both politics and an institution beyond which it could even become a kind of lifestyle. A resignation to fate whilst the fight continues to survive and meet certain life goals. Last week, I was literally bullied into signing a petition to keep the NHS public, especially when I mentioned I was a cancer survivor, I got a good earful.

Knowing where your loyalties lie

Yet, I owe my survival not to the UK NHS but to the Dutch healthcare services that acted promptly on noticing that I had a serious condition, where they are more interventionist than reticent. A chronic condition discovered for well over two years now in our NHS has had doctors do everything but go for dealing with it. I have been observed and sweet-talked in the notion that the real damage is probably a decade away when we could address the condition now and be done with it.

It is unsatisfactory and it does make you want to find a pressure group agitating for quick decisive action rather than what looks lackadaisical almost to the point of uncaring with the hope that we expire before we cost the NHS anything for our treatments.

Reviewing this situation allows me know where my loyalties lie, knowing those who really did something as opposed to systems that pay lip service to situations they never practically affect in a positive way. In other spheres too, you begin to know that your loyalties must be borne of profitable experiences of humanity rather than have your loyalties determined by default to what pigeonholes you have been allocated.

Know your story and stick to your life

On the matter of adversity, the counts are numerous and only a few people know to any extent what the experience was, the losses were many, yet hope lives and thrives in ways that celebrate the resilience of the human spirit.

There are reasons to identify and conform, but in the end, you have to have your own personal experience written as your own story in your voice and in your time, extricate yourself from being a statistic or a number, not a patient, not a victim, not a mishap or an unfortunate reportage, but a person with a name, with a life and life they are living their own way.

Politics has its place, but the stubborn will to be different is the best story that can be told of any life that has lived on this planet earth. For that, I commend Peter White and Melanie Reid for teaching me more about facing life, not as a triumph or a tragedy, but as life the best way you can.

Thought Picnic: Yet I Celebrate My Handicaps As Signposts Of Thankfulness

The heat of a seat

Vulnerability is what defined today for me, and this to a point that I risked self-pity before I dusted it off as life, and life just happens.

I just about boarded my train and found a comfortable space to seat when the announcement came that the train that had rolled into the platform was in fact not the train I wanted and that another was expected before this left the platform.

There was no need to rush but the crowd had gathered for the other train that the choice priority seats were taken by the able-bodied as is usually the case in London where they ignore clearly labelled seats before they ignore people who clearly need those seats.

At the next stop, people with bicycles got on, four in all, and as the third man tried to fit his bicycle in, you could see he was annoyed that I was sat where I was, completely oblivious of why I did sit there.

Unseen to the mean

Sadly, the pleasure of being picked up in the morning was lost to circumstances beyond my control that I had to queue up for the free bus ride to the office. When the bus arrived, the driver got off to tuck my luggage in the luggage compartment, and as luck would have it, the first seat was occupied by someone who felt the seat next to him was best used by his bag.

No, people with apparent mobility problems are somewhat invisible and thereby not catered for or responded to with consideration or dignity most of the time, so haltingly, I made my way to the back of the bus, where in my more able-bodied state, I would have offered my seat closer to the front to someone who was now how I appeared to get around.

Every excuse to refuse

At the reception, I had hoped the situation would get better but compelling security requirements meant that the receptionist just had every unhelpful excuse even after being informed that I use a cane, I almost waved my cane in remonstration, and my office was on the second floor up two flights of stairs.

Bottling up my emotion, I apologised for expecting any help and eventually lugged my stuff up to my office, and when I closed from work, I did that same again, with effort but maintaining my dignity.

Yet, when we were picked up for our induction session that morning, the leader raced off ahead and by the time I knew it, being the third out of the door, I ended up the last as I quipped, we are never noticed are we? The man ahead of me then considerately decided to take up the rear as we arrive in the conference room, much later than when everyone had settled down.

The day passed without the company of my colleague, but I met up with acquaintances for lunch as I occupied the day with going through documentation and installation until the day darkened.

A bright dot on a blind spot

Knowing I had to walk to the bed and breakfast inn, I left with little light to spare, but I was aware that the road to the inn could be enveloped in pitch black darkness.

I had to contact GoogleMaps to be sure of where to go only to realise that I had to cross a road at a point where cars travelling at speed came round two blind spots that it was more their lights I needed to be out of sight because I really cannot judge distance from me and the approaching speed of a vehicle to be able to cross a road safely.

That was a 10-minute wait, and it could have been longer as I reflected on the favours I have enjoyed and how I could easily find myself in a very vulnerable spot if the help I had before taken for granted was not forthcoming.

For to be seen by the keen

Nevertheless, whilst momentarily, one has scope for self-pity, one still needs to get on because the world just gets on with being the world with or without you.

It was made more palpable when during the induction we were shown a DVD on fire safety which featured a lady with crutches who needed help, but was obstructed by things that had fallen over in her pathway, it took a while for someone to have the presence of mind to help her.

It is important that one recognises what one can do, where there is a danger or the risk of such, know those who would be concerned for more than themselves to be aware of others and their surroundings to lend a hand when needed.

An attitude of gratitude

I can only feel for those who are less able than I am in settings where people are less considerate and in buildings that are not fitted for accessibility. We need to get on with our lives regardless, and these little indignities would hopefully take no greater significance in our lives than as fodder for a raconteur.

We would live as independently as we can, with patience, with determination, with deliberate effort and stoicism whilst being thankful for the thoughtful, the mindful and the helpful. Thank you for your Good Samaritan humanity.

Nigeria: From Basketmouth to Basket - Rape has no place in jokes

Those jokes are no jokes

Yesterday night a tweet came upon my timeline about crude, crash, rotten jokes made by Nigerian comedians whose following had for the laughs not particularly reflected on the depth of what they had heard or read.

Jokes are supposed to be light-hearted fun but they should not be used a cloak for more sinister messages of commission, omission or indifference causing extreme offence to our common and civil humanity.

Now, I choose the comedians I listen to with the expectation of hearing wholesome and witty stuff, jokes you could go back home to tell mother without looking for some rating that would leave certain people wondering the kind of company one keeps.

Jokes can be risqué, for adults only, suffused with dark humour but that in itself should offer no artistic licence to celebrate abuse, denigration or atrocious stereotypes.

Crossing the line

In this case, we must broadly agree that jokes about paedophilia, pederasty, sexual abuse, rape, domestic violence, disability, racism or the Holocaust cross the line of decency into otherworldliness.

No matter how good the joke is, we must have a filter that triggers when such jokes are played for laughs appealing to the basest elements of our humanity. That care and discernment not applied to what we entertain may mean we inadvertently acquiesce to and by unfortunate response appear to endorse the most reprehensible of views.

Rape has no place in a joke

One such occasion came about with a Nigerian comedian called Basketmouth who appeared to suggest that Caucasian girls are of easy virtue to be laid by the third date and that black girls who by the ninth date have not yielded to sexual advances should be raped.

Many excused this apparent slip and mistake, and probably it would have been excusable as a first offence but Basketmouth has form, there is a video of a joke where he more or less created the scene for the rape of a vulnerable old woman.

To date, Basketmouth and probably any other comedian that cannot appeal to wit but can do bawdry and off-colour humour to a willing and barely considerate audience has gotten away with this kind of talk and script pocketing the proceeds of their rottenness none the wiser about their conduct – a line had to be drawn.

What would our society condone?

Much as our society is still struggling to elevate the rights of the woman and the child, putting it on the agenda where abuse would not only be frowned upon but would face the full force of the law, one expects those with a platform to be at the forefront of progressive thinking rather than subscribe to a savage instinct because it is conveniently lazy to attract adulation.

With a comedian’s platform and one as popular as that of Basketmouth comes great responsibility, one that they should daily be aware of not to abuse and misuse that they do not become a channel for the bits of rotten cultural conditioning we are striving to rid ourselves of.

We cannot in this day and age appear to trivialise sexual violence against women, children, men, animals or whatever might sit well within the thresholds of depravity we can countenance.

More so, this trivialisation introduced surreptitiously in a joke is heinous at best and it must be condemned in the sternest terms.

What it says about us

Those of us who have for whatever reason been able to accommodate the depictions for laughs should again reflect and wonder if when we have acquiesced with laughter we might well have been conditioned to act the situation out if presented with such an occasion where opportunity and advantage might mean we escape sanction.

Having known abuse myself as a child and seen other children like myself abused, then by familial connection been affected by the rapes and the abuse of people known and dear, there is just none of the genes associated with humour in me to react with laughter to any jokes that celebrate low-life acts against our humanity.

We, as a society obviously have to decide if excusing barbaric behaviour in innocuous jokes is what we are as people or we have decided that every means possible be deployed to condemn, repudiate and correct such behaviour with the comedian going beyond just the apology to working with NGOs serving victims as a means of restitution and an example to others.

Comedians can source better material

I am of the opinion that Nigeria has enough talent to craft better jokes than puerile unwholesome rotten stuff. Being a Basketmouth is no excuse to have a basket brain and by that become a basket case.

It does appear Basketmouth has issued an apology, which for me is neither here nor there. He was wrong in the first instance, he should have known in these times that such jokes were unacceptable and it should never have happened.

However, we are where we are now and I hope lessons are learnt by the comedian, other comedians and the audiences that lap up this stuff.

We are not a nation of rabid Neanderthals with poor taste and the absence of cultural refinement. I hope that we respect and treat with the dignity our fellowman; woman, child or any other person regardless of race, ethnicity, intellect, age, sexuality or disability. That is the bigger message, in a joke or in serious conversation.

Postscript: I decided not to dignity Basketmouth with a link to his profile and there was no reason to give his offensive joke more oxygen of publicity. Rather a bigger point was being made here about the content and context of jokes.

Nigeria: More on the Paralympians' Allowances Story

It was a good news story

Yesterday, I wrote a blog based on a news story published in the Nigerian Tribune with regards to the payment of allowances to our Nigerian Paralympic contingent to the London Paralympic 2012 Games.

It was titled Nigeria: Do Right By Our Paralympians Before Sundown and I challenged the senior sports administrators of Nigeria to address the issue with immediate effect.

A confrontation

By the evening whilst I was travelling in and out of mobile telephony areas on the London Underground trains I got involved in a direct confrontation on Twitter with @MrFixNigeria, the sometimes feisty and sometimes level-headed  Special Assistant  (Advocacy) to the Minister of Sports.

Now, a slightly truculent @MrFixNigeria was of the opinion that I was peddling an unverified fictitious report on the basis of him having confirmed from the Chef de Mission had said that the athletes where paid accordingly.

Accordingly is sophistry

One then asked what accordingly really meant and how accordingly could have somehow given rise to a fictitious report in a national newspaper about a protest, the payment in dollars and the difference in payments made to the Paralympians compared to the Olympians only weeks before.

The reporter who filed the story signed off as being in London, it would be rather atrocious if not mendacious for a newspaper to unnecessarily forment a crisis and create a controversy on the payment of allowances just to embarrass the sports bureaucracy – on balance, every Nigerian contingent to an international event has had to protest about allowances and I know that when I attended the Nigeria v Bulgaria match at the France 1998 World Cup in Paris, there was a threat of a walkout just because of allowances too.

A Google search for Nigerian Team Allowances presents pages of references indicating the story does have some provenance and elements of truth.

Ask the athletes, not the chiefs

The Nigerian Tribune in my view engaged in a spot of investigative journalism that does not paint of the officials in any good light and the least they should do for matters of both integrity and reputation is to speak directly to the athletes about their concerns and experiences rather than insulate themselves from the core issues that should inform any policy for change and reform they might consider to prevent sporting disasters in the future.

I hold this view more strongly because in conducting his London 2012 Olympic Review as the Olympics were closing a few weeks ago, it appeared the Sport Minister had laid out a whole range of interesting reforms without input borne of debriefing the athletes or their coaches – the danger is such a review will not by any stretch of the imagination address the fundamental issues athletes and coaches face in preparing for international competitions.

The arms-length approach of hierarchical reporting when matters go wrong in the lower cadres will only present to officialdom a false sense of order and efficiency with the athletes being frustrated by their lack of access to the people who really can ensure that the chain of command that guarantees their welfare is clued-in on what it will take for an athlete to perform at their best without distractions.

Get a shop floor view, first-hand

My advice to the Sports Minister and his Special Assistant is to go to the shop floor and get their hands dirty, find out how each sport works from the view of those who really have to sweat it out to bring back the laurels.

This should be first to squelch every rumour of impropriety or ascertain how and why story like the one I wrote about became a topic of discussion either as the truth of the situation or otherwise.

Meanwhile, the Nigerian Paralympic contingent has added another gold medal to their Powerlifting tally bring the medal haul to 5 Golds, 5 Silvers and 1 Bronze – it is the sports officials that now have to make themselves worthy of the task they have of ensuring our heroes are not distracted by incompetence and other shenanigans.

Nigeria: Do Right By Our Paralympians Before Sundown

Hail our heroes

As at this morning the Nigerian contingent to the London 2012 Paralympic Games has won 10 medals in the Powerlifting sport with 4 Golds, 5 Silver and 1 Bronze shared amongst 4 gentlemen and 6 ladies.

This means in the best attended and arguably the best representative Paralympic Games ever, we have gloriously heard the strains of the Nigerian national anthem played out to the whole world four times and had Nigerians step up to take other laurels six times.

Considering what a debacle the Nigerian outing to the Olympic Games was earlier in August, these paralympians have singlehandedly with guts, ability, spirit, dedication, resolve and amazing patriotism put Nigeria on the Paralympic map at the 14^th position and leading the Powerlifting medal table comfortably.

Sports bureaucracy failing us again

It should not have been beyond the capability of the redolently incompetent sports bureaucracy to have learnt some quick lessons from London 2012 to have been better prepared to do right by the Nigerian Paralympic contingent to ensure that they are being dealt with fairly, justly, honourably, respectfully and with consideration on all matters with regards their welfare and all they need to represent Nigeria without being subject to unnecessary pressures and angst.

I woke up this morning to read a manifest injustice meted out on our patriots by some faceless and unconscionable officials who should by all rights be out of a job before the sun goes down if there is any justice in this world and if the Sport Minister and his gilded entourage along with the much vaunted tough-talking will act to clean up the unforgivable atrocities that have bedevilled Nigerian sports administration for too long.

Too many wrongs unforgiveable

First is the matter of the late payment of allowances, we have always been tardy with payments that are due across the board in all walks of life in Nigeria but it is no excuse to have high-profile representatives of Nigeria suffer such indignities when they are supposed to be concentrating in beating the world and bringing glory to Nigeria – that this singular view was lost on the sports officials is regrettable to say the least.

Secondly, the athletes are in the United Kingdom where the British Pound is legal tender, there is no reason why the athletes should have been paid allowances in dollars and then have to run the gauntlet of being creamed off by others waiting in the shadows to exchange the currency to pounds.

The sports officials should have converted the allowances to pounds before paying the allowances; it was just an unnecessary burden to place on the athletes who in terms might have been desperately in need of the allowances that some rotten official thought to exploit their vulnerability.

Short-changed by £1,329

Thirdly is the matter of equality in representation. It is instructive to see Paralympians bring recognition and glory to Nigeria that seemingly and apparently more able Olympians failed to do. There is no reason why any sports representatives of Nigeria should be treated differently, unequally and with contempt.

Apparently, the luckless Olympians were paid £2,400 and now the Paralympics contingent was paid $1,700 (£1,071 @ today’s exchange rate from Google) suggesting they have been dealt an inequality blow and short-changed by £1,329. It is unbelievable that anyone in charge of sports administration will sanction this atrocity and expect to get away with impunity.

Equality is the biggest message

If for any reason not enough money was allocated for the allowances of the Paralympic contingent, then I expect that all is done to make up that shortfall by every means possible. The success of the Paralympic contingent should be a ringing endorsement of challenged people to come out and be the best they can be in any endeavour they choose to embark on.

It should be the impetus for equality legislation that no matter how impaired physically or mentally you might be in Nigeria, you will not be discriminated against, you will be accorded due courtesies, respect and access to all opportunities that are available to Nigerians and those who contemn, disparage, denigrate or belittle you will face the law with punitive compensations made out to those affected.

Minister, step up

This, I believe will be the first test of the Sport Minister Bolaji Abdullahi’s resolve to change the face of sport in Nigeria or continue to allow impunity and incompetence to reign in our sports bureaucracy.

To go into speculation as to why one has had to write this piece will be too unreadable for the disgust that it will raise, the only remedy to this matter is to do right by our Paralympic contingent – Pay them their allowances, pay them £2,400, pay them in British pounds, pay them now and make a public shame of all those involved in this disgraceful debacle.

The time to remedy this situation is now, along with compensation for the unnecessary hardship and exasperation caused our heroic athletes – these allowance protests at every sports meeting must stop forthwith – Enough is enough! 

The 5 Tibetans - Yoga for Dummies, I think

Unhelpful to the sometimes helpless

The other day, as I got to the station and was making for the train, I saw a lady who appeared to have lost her orientation.

She was blind and she was using her cane to try and locate the blind guides and I just realised that there were none on the station concourse.

Interestingly, just outside the station on the forecourt where we could board trams and buses there were yards of markers for the blind but they had to get there first.

It then occurred to me that for the minor handicap I have with a funny back and a once flexible left foot that had by reason of cancer made me flat-footed seriously affecting my gait, it could no way compare to the situation this lady was in.

Inaccessible to those needing easy access

I have many a time lamented the fact that stations and airports were not necessarily built for easy or enabled access, in what I will with political incorrectness term handicap-unfriendly.

The lifts are far away, sometimes the escalators are not working, in some airports, especially Amsterdam Schiphol and London Heathrow, it could be hellish at best to get from check-in to boarding gate – the planning is utterly inconsiderate of those who might with their handicap want to maintain their independence and sometimes travel alone rather than have to be accompanied by reason of dictates of the establishments that run the buildings.

So, I went to the lady asked where she needed to go, she wanted to go to the ticket office, I offered to take her there and she confidently linked her arm in mine and we made for the ticket office and did not leave until she had been served.

Sadly, in such situations you find the able-bodied being indifferent, inconsiderate and uncaring, they’ll jump the queue to steal a match on those whose mobility or ability is restricted and do so without any feeling of guilt or concern, it is appalling.

5 Tibetan Rites

As I visited someone yesterday, he asked why I was using a cane and then gave me some advice as to how to manage the issues with my back.

It is called the 5 Tibetans [1]; a number of easy yoga exercises that apparently help with his more serious back problems than mine and he proceeded to first demonstrate the exercises and then drew them out.

I found a flash-based demonstration of the 5 Tibetans [2] and I suppose this will become my daily routine with the hope that I will get to see and feel some good results.

What I cannot seem to control is the fact that sometimes I can walk really long distances at pace and well, this afternoon, I do not think I was making more than 20 metres in a minute, I just cannot bring myself to speed up that crossing roads with traffic lights still have me far from safety long after the lights have turned red.

I cannot put it down to tiredness at all, it just seems to be a weakness in my motor systems that manifests at times that I just consider each step I take is towards my destination without giving consideration to how long it might take to get there.

Suffice it to say I have usually willed myself to walk when it might be considered sensible to just use other means of transport; there is no doubt that I probably need a regimen of physiotherapy.

Sources

[1] Five Tibetan Rites - From Wikipedia, the free encyclopedia

[2] 5 Tibetans - Yoga Rejuventation Exercise