30. Déjà vu – Part 1

brussels

Work as normal

A couple of weeks after settling back into work my good friend Jem forwarded a google post that she had seen that had been sent internally. There was going to be a lunch and learn session in our workplace (a session on a particular topic heard during lunch time) on prostate cancer. I was very grateful as otherwise I would have missed it completely as sending a message via a google community has a limited audience.   

As a registered volunteer with PCUK I get emailed a weekly bulletin of fundraising and volunteering opportunities for the coming few weeks. I had not seen this one for our company as it was probably sent on one of the WhatsApp groups that I had not joined. So keen to do this one I emailed the PCUK office and eventually the person that had sent it out got back to me. They had already assigned someone to it and as it was deemed a ‘strategic’ company the company liaison team had been involved as well. Gutted that I had missed the opportunity to present it, I signed up to just sit and attend anyway. Presenting the talk was my way of giving back to the company that had been so supportive of me when I needed it most. The important thing, regardless, was that someone was coming to give this important talk.

In our large company there is not a single email account that contains everyone, you only have visibility to your section or department. As well as preventing spam I can imagine it’s to stop disgruntled employees or otherwise from the temptation of mass emailing an electronic two fingers. With only three weeks to go only the numbers that had signed up were pitifully low – only twelve. I set about emailing the IT community employees and contractors and putting up flyers where ever I was permitted. At the same time I got an email from PCUK that the original speaker now had work commitments and could no longer do it. Would I be able to do the talk myself?

I didn’t need asking twice and that made me smile.

With a week to go the numbers that had signed up to attend had jumped to sixty five and I was elated. As with most meetings you are lucky to get half or a third of the number that sign up actually attending, so it was still a good number. Just to add to the story the ‘Senior Corporate Partnerships Executive’ of PCUK would also be in the audience. No pressure then.

On the day I got there nice and early and set up my equipment, I was going to use the standard presentation and then my story afterwards. I waited ten minutes after the start time as the attendants were still streaming in. The room holds fifty but we had at least sixty odd in there as they were standing at the back. It was good to see some women in there as well, at least five of them had attended. The only glaring absence was black men. There are over a hundred black men in the whole of my building, including Asian men. There was only one black man in attendance, which disappointed me.

The talk went perfect. No groupies, no one on their phone, no equipment malfunction, no questions I could not answer. It was just normal. I don’t seem to get it too often – It’s good to have normal.

During the meeting one guy disclosed that he too had had the radical operation. Another guy emailed me afterwards to thank me and hint about problems that they were having. The day after a stranger in the canteen stopped me and thanked me for my honesty.

My company made a donation of £3k and had put out some collection boxes. A tidy sum going to a fantastic cause.

Bus Rides and sprouts

It really seems ages ago but back in the dark days after having the catheter removed I started getting in to my writing routine. I was wearing pads and had started on the pelvic floor exercises. I also needed to start getting out of the house for longer periods. After meeting my ‘friends’ the bitcoin man and the mutant rat in the park I took to the safer option of bus journeys. I tried a number of bus routes (this is sounding really nerdy but it wasn’t) but one in particular that ticked the boxes. It was long enough that I could write a decent amount but more importantly there were a number of places that I could use a public toilet as back then I needed frequent pad changes. The point at which I got off the bus and got the next bus back to my mums was one particular bus stop. This bus stop would turn out to be less than thirty seconds from one of my future talks.

Craftpersons of London is a regeneration company. They specialise in transforming urban spaces, running health and wellbeing programs and providing enterprise opportunities for local residents. They wanted someone to come down and talk to a group of African and Caribbean men. I volunteered and was introduced, via email, to one of the leaders in the company Michelle. Unlike other talks she had a brief for me. They didn’t want a power point presentation, they wanted something more interactive. The men were also going to share a meal before the talk (I didn’t assume that included me) and they could not confirm the numbers attending. It was all balancing out quite nicely.

The address didn’t mean anything to me at first and as I took the underground and walked for about ten minutes it didn’t dawn on me exactly where I was until I was outside the office and smiled shaking my heads at the odds of this happening. I was about twenty minutes early for the talk. It was a small office, seating had been arranged for about twelve guests. Only two people had arrived early and one by one they began to trickle in. When there were about eight guys and one woman, one of the guys enquired where all the others were and then one volunteered to flush them out of the bookies next door. I smiled at the thought. He disappeared and returned about five minutes later with about four new bodies. At that point our host introduced me and then disappeared to help with the food.

I introduced myself and gave them a number of statistics. About two minutes into my talk a mobile phone belonging to one of the guys at the back started ringing. I carried on talking as you do. A few more guys also joined us.  I got into a rhythm and had a couple of questions along the way. Nothing taxing, question wise. Symptoms, what’s an MRI scan, when to get retested etc. Michelle had suggested that we do the talk in two parts ask she wanted to have a break for food. No sign of Michelle so I went onto part two of my presentation which was my journey. A few minutes into this part of my chat and the same mobile phone went off. I ignored it and carried on talking again. About ten minutes further down the line where I had got up to the point of my choice of treatment when this guys phone went off again. This time I stopped talking. The guy next to him just grabbed it, with a chorus of comments from the others, and furiously assaulted it with his fingers and handed it back to him with a look that would not be on the ‘First dates’ program.

I carried on again. A few minutes later a guy came in with his phone already to his ear on a conversation. I thought, out of mild curtesy, he would have completed the call before he sat down. He didn’t. I stopped talking while he continued whispering into his phone and just looked at him, smiling. Very quickly the group realised why I had stopped talking. There is something quite delectable about peer justice, especially from those that have given up time from the bookies. The words he received were not many, but brutal they were. I won’t repeat them here – no need. Not only did he instantly terminate his call at that precise moment he probably regretted ever owning one.

I smiled and continued. It was a professional smile on the outside but inside I was cackling like a hyena, along with the words “Oooooh someone got TOLD”.

If there are a couple of things that will get the old Ellis fired up are talking about herbal remedies, a  mention of slavery (a first) and blaming someone else. This someone else was the ‘establishment’. Add to the mix a ‘street’ black crowd and I’m on it.

So one guy – the most vocal of the bunch during the evening enquired about herbal remedies. I told him my story of the person that died trying to follow a holistic, non surgical solution. I also told him about the guy that suggested six weeks before my operation that if I cut out red meat for the six weeks he was absolutely convinced that my PSA would be sufficiently lowered that I would not need the operation. I asked him why this person, who has a cure is not rich or donated this wonderful gift to humanity. Why on earth would they just want to limit this cure to someone with no money like me?   I just added that I am no-ones experiment.

All I ever ask of anyone suggesting a ‘wonder cure’ that they show me some clinical test results, not the word of a wholesaler or something someone just told them or a YouTube video that someone has put together. That tends to kill the conversation. He also suggested something about slavery and mis-information. I am sufficiently vague about what exactly he said because to tell the truth I didn’t want to hear what nonsense he was talking about and I had quietly (and professionally – while still smiling) rolled my eyes. I put him straight by saying that prostate cancer affects us, people of colour, twice as much as anyone else. I told him of my first hub meeting that consisted of twenty odd white men and three black men including me. I told him how big grown men were running scared of the table that we had at the UK Black Business show. I told him how the nurses at Guys hospital practically bang their heads on the walls trying to get black guys to engage – from making a decision about treatment promptly to participating in trial studies. I left the best until last.

I said to him, but addressing the room, let me give you an example. You say the establishment has conspired to keep this information away from you. Well with you being here today you have now been empowered. You know the facts and the statistics and I’m going to give you some information to take away with you so you don’t forget. Can anyone here tell me that they can go to their friends, that know and trust them, and not meet any resistance trying to give them this information.

The room stayed silent. I had made my point. Then with perfect timing, Michelle came up with the food.

A few minutes into the food and Mr Vocal still had another comment to make. He said that he had read somewhere years ago that one food that can beat cancer is brussel sprouts. I chose the newly arrived chicken over tackling his comment – all four pieces. He was later to be proved right that it has been suggested that it may have some cancer preventative properties. What he either chose not to mention or didn’t know that the amount suggested to make any difference is a cup and a half per day, every day. That’s a lot of sprouts.

Good luck to keeping your friends as you discover one of the gaseous side effects of sprouts.

They have asked me back to talk to a mixed sex group as women are also interested in learning about prostate cancer.

I will happily be back on that bus again then.

 

 

 

 

 

 

 

 

 

 

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