Prostate Cancer questions - get the right answer

When Tom was going for his radiotherapy sessions there was a particular day when he was struggling badly. Not really about the radiotherapy more about whether it would work. One of the radiotherapy team at Clatterbridge who was involved in his treatment noticed he was looking a bit low and asked why? She sat with him encouraging him to talk about his feelings before asking “Have you been looking at the Internet?” Of course he had and ended up scaring himself silly. Very forcibly she told him under no circumstances to rely on information he found online. If he needed information or advice to ask at the clinic. They had his notes, they knew about his treatment, they had the expertise to advise him on his situation or they knew where to find the person to do so.

Whoa you may say, after all this is a blog. Well, I specifically do not give any medical advice, I can’t I’m not medically trained but what I do have is practical experience of the impact of a diagnosis of Prostate Cancer. I know how we learned to cope. I know the mistakes we made and also the best moves we stumbled upon.

Accurate information is essential and it must be appropriate for you. But in the early days, before you get a definitive diagnosis and actually have access to the oncology specialist unit, you are bound to go seeking information. When we visited our local hospital recently we spotted an absolute treasure trove of top quality information in a display of booklets compiled by Prostate Cancer UK. Positioned in the Urology outpatients waiting area, these were substantial documents, readily available for any visitor to a range of outpatient clinics. They covered all aspects of the disease not only for the individual but the family and supporters too. The information is available for download on their website (oops that’s the internet again!). You can see the number of topics separately covered in the collection illustrated here on the right.

I picked up 3 which seemed relevant to us and the blog including "When you're close to a man with prostate cancer", "Prostate Cancer, a guide for men who have just been diagnosed" and "Follow-up after prostate cancer treatment - what happens next?" With the understanding the information is general, all are well written in a simple style with jargon explained. The information given about the disease and its potential emotional impact on you and your family is relevant internationally but of course details of how the organisation of diagnosis and treatment operates in the UK may not be applicable in other countries. Leaflets like these inevitably lead to more questions but I think they are useful because they are organised, they help you to think about topics in a sequence, you can write notes in the margin, underline interesting pieces, go back to them time and again. The main advantage is many, many experts and practitioners have come together and agreed the content making the booklets a pool of knowledge. In contrast the internet is like a mad tangle, following the separate threads and making sense of them is a nightmare, good advice, bad advice - how are you supposed to know? Stick to the "official" sites and be sure to talk with the people who know about your situation. We slept much better once we'd learnt that lesson!

Prostate Cancer UK 10000 Challenge

To highlight the more than 10,000 men in the UK who die of Prostate Cancer the charity continue to offer the 10,000 challenge. It has been going for a while.you just come up with any challenge which has a target of 10000. So collect 10,000 pennies or pounds, take 10,000 steps, run 10,000 metres. One of the more creative ideas came from Angela Sharpe who decided to take 10,000 photos in 100 days in memory of her father, Michael Jolly, who died of the disease.  She put on an exhibition as well as creating an online gallery of the photos, it includes a number of people affected by Prostate Cancer. http://www.angelasharpephotography.co.uk/

Prostate Cancer UK would like you to use the challenge as a fund raiser. Now as you know, the Clean up Prostate Cancer project is not about gathering donations but raising awareness. Still I liked the 10000 Challenge idea.  So mine is about collecting rubbish along 10,000 recorded yards of road. While I do not collect donations through the site you can always go to Men United.com and make one directly.  An interesting alternative would be to find others taking up the 10,000 Challenge on justgiving.com, virginmoney.com or any of the reputable donation sites.

How’s it going? With today’s collection to finish off Whiteley’s Lane, Lathom I’m well over half way to my goal – 5632 yards completed with an incredible 14 bags of rubbish collected in 6 separate sessions. I’m not including all the collecting I’m doing because sometimes actually doing a measurement can be complicated. Here's a selection of the rubbish which has gone into my Challenge bags.

Carrier bag charge, charities and the environment

The introduction of the 5p charge for carrier bags in England has certainly stirred up some dust. One of the main decision making factors was reducing litter. It’s worth pointing out that both Scotland and Wales, Northern Ireland and Eire already make the charge. Now in my line of business, roadside litter collections, I’ve come across quite a number and today I made a point of counting how many went into my bag. On a nice country lane surrounded by farmland I picked up 4. There is always plenty of other types of litter like drinks bottles and cans, cigarette debris but so often the carrier bags stand out like a sore thumb. Understandably, I support the charge. The availability of carrier bags has made us all just plain lazy.

The other aspect of the charge which is relevant to this blog is that proceeds from the charges are supposed to go to good causes. Could that include charities around Prostate Cancer? Well, earlier in the week, when I did a search, I couldn’t find anything from the major supermarkets but today found a number of statements. Proceeds in Morrisons are going to the Morrison’s Foundation from there they will be distributed. A number of supermarkets are contributing together to help establish a state of the art dementia centre in London, they include Asda, Iceland and Waitrose. Tesco will be supporting community green spaces initiatives. I’ve not found anything specifically for Prostate Cancer but Macmillan will benefit and they contribute so much to the care of those who are nearing the end of their life including men with advanced Prostate Cancer as well as their families. So it is good news all round.

I did find statistics from Morrisons regarding income from the charge in both Wales and Scotland just to get an idea of possible proceeds. The following is from their website. Don’t forget this is one supermarket and population sizes also vary between the home nations. Based on these figures this is going to be a serious windfall for the charities which receive support through the scheme. It is striking how many bags are still issued even with the charge.

Proceeds generated in Wales

Reporting year 2014/15

Number of Single use carrier bags	Gross Amount Received	VAT	Net Proceeds
9,596,430	£479,822	£79,970	£399,851

Proceeds generated in Scotland

Over the most recent reporting period proceeds generated from charging 5p for carrier bags in our Scottish stores generated a £460,206. 

Reporting year 2014/15

Number of Single use carrier bags	Gross Amount Received	VAT	Net Proceeds
9,204,124	£460,206	£76,701	£383,505

I mentioned in an earlier post we had been to Clatterbridge last week. From their we went for an unplanned visit to Cheshire Oaks – no bags! So I paid my 5p. In M&S I asked the question about where proceeds would go. The assistant did not know but she did tell me that that Clatterbridge Cancer Charity was that particular store’s nominated charity. There were collection boxes all along the counter and the assistant was so enthusiastic. Well done  to all those retailers who support their local community.

Can't see anything but good coming from this law. Now we have to work out how to get rid of all that plastic wrapping so many of our purchases come in.

Information is power

I am a keen genealogist, I’ve spent hours over many years tracking down people who share the tiniest drop of a bloodline. It has taken me all over the World. One of the many fascinating discoveries I made was the grandaughter of Dad’s Uncle Robert who emigrated to South Africa in 1920s then disappeared so far as the remaining family was aware. Sally was able to tell me about the medical issues their branch of the family had, Type 1 diabetes and thyroid. Bingo, it was a match and provided me with answers which had hung in the air for years. Those genes!

Genes have become a modern day fascination of medical communities. You cannot be unaware of the contribution the discovery of how to read DNA has made to medical science. It is relevant to Prostate Cancer. For some people, including Tom, the susceptability to this cancer is thought to increase with heritage. His father and his uncle were both diagnosed. We don’t know of any other member of the family having had the disease. In the past Prostate Cancer would only be recognised at an advanced stage and life expectancy was much lower than today. It is likely many men living with the condition would die of something else without being aware of the cancer.

Another interesting aspect of increased diagnosis of Prostate Cancer within family groups is how far awareness plays a role. Today we are so much more aware of those blood links but maybe 30 years ago the death of a grandfather as a result of Prostate Cancer would be mourned by sons and grandsons, brothers, nephews and cousins but would they all go out and get a PSA? (It wasn’t readily available then but you get the point.) So is the incidence within family groups partly a consequence of awareness?

Colin Jackson, our Olympic hero, certainly thinks so. He has linked up with fellow athelete Donovan Bailey to spread the word. Colin has checks every 2 years – 2 of his uncles were diagnosed. Donovan lost his grandfather and 2 uncles have been diagnosed. In their case the ethnic factor comes in to play. The incidence of the disease in black men with West Indian heritage is 1 in 4. Colin was born in Wales but his parents had emigrated from Jamaica while Donovan was born there.

Then there is age. The older you men are the more likely you are to be living with Prostate Cancer. Much of this is down to the changes in your body in middle age.

Those incidence rates I’ve quoted are useful, they give us information. Information = power. The problem is making sure you get the right kind of information and act on it.

·        You don’t need any of these heritage factors to get Prostate Cancer.

·        Being aware and acting early gives you the best chance of survival.

·        Sharing this message with your family, friends and colleagues could help keep them safe.

What does go into my sacks?

I am being very brave about the occupational injury I experienced today on Wigan Rd, Lathom. Of course, like many such injuries it was all down to being distracted  even so that nettle had a pretty fiercesome sting. Not withstanding I did manage to collect 2 bags of rubbish and I have to say it was one of the most bizarre combinations of items I have yet picked up. On the bright side the 6p will go into the Prostate Cancer UK moneybox.

I do wonder sometimes about the personal and valuable items which find their way on to the roadside verges. Previously, I found this whole wodge of documents and cards (not including bank cards) dating all the way back to 1998. Couldn’t work out the scenario but they definitely had been dumped en masse. There was nothing more recent and nothing of value but it has played on my mind as to whether I should have handed them in to the police.

Today I gathered up a parking ticket issued at Ormskirk Hospital in August and still in its wrapper and, more concerning. a bank card. It did look like it had been there a while so I brought it home and chopped it up.. 

More mundanely, I picked up this crushed bucket, this load strap and this promotional sign. It does get me a little annoyed when notices are put up along our roads solely for commercial reasons and are left. Incidentally, Cramford House is a collection of apartments on Ruff Lane, Ormskirk. As you can see, that sign has been littering the hedgerow for some time.

Toilet card for those sensitive situations

Just wanted to mention the Macmillan toilet card, Tom was offered one when we were @ Clatterbridge last week. Some cancers and their treatments, including Prostate, affect bladder and bowel function. The idea is you show the key ring or card to businesses and shops etc and they will be sympathetic to this sensitive issue without loads of embarrassing questions. While we're on the subject, a RADAR key costs £4.50 (Disability Rights UK) and gives access to locked public toilets.

This is our experience in the UK. It would be really helpful if you had information about this kind of support in other countries, worldwide.

Litter picker's dilemma

It may seem that collecting rubbish thrown on the roadside is a very straight forward business but just occasionally it provokes a real dilemma. Yesterday finishing off the rural section of Long Lane, Aughton I picked up the remains of a styrofoam take away box. It was so heavy I turned it over and found these guys bedding down for the winter. So what do I do? No options really, I carefully placed this impromptu bed back in the hedge bottom. I’m sure the piece of litter will still be there when I return to the spot, this kind of thing hangs around!

Neil, a passing cyclist, stopped to drop a piece of litter into my bag and accepted one of the Know you Prostate Cancer leaflets. He got in touch to the facebook page later offering his appreciation for the Clean up Prostate project and for giving his the chance to dump the rubbish, he had been “carrying it for miles”. The perfect fast track!

Quick update

Just a quick update tonight. Dashed off to Clatterbridge today for Tom’s Prostate checkup and things are looking good. PSA .17 made everyone very happy.  After each visit I think about what it has taken to get to this point and with those memories comes the ghost of how it could have been.  I always feel so very, very lucky to have the chance to beat the enemy. Others are not so fortunate which is why Clean up Prostate Cancer exists. Men need to know and to act.

While we are optimistic about our own battle, it hasn’t gone away.

“You cannot determine the hand you are dealt, but you can determine how you play that hand.”

Randy Pausch, “The last lecture”

Donation in memory of Sean Vesey

Sean Vesey 1954-2015

Thank you for your gift of £12.69 to Prostate Cancer UK in memory of Sean Vesey, Consultant Urology Surgeon .

You opted in for GiftAid – that means your donation is worth £15.86. 

If you have been following this blog you will be aware that the focus of Clean up Prostate Cancer is to raise awareness of the disease rather than soliciting donations. However, along the way, people have been very generous not only accepting Know your Prostate leaflets and listening to my story but also giving. Having surpassed my £10 target this weekend I made Clean up Prostate Cancer's first donation.

Sean Vesey was born in Ireland in 1954. He qualified in medicine before continuing his career in England, specialising in urological surgery. There are many online obituaries to Sean which all demonstrate his constant thirst for knowledge and improving treatments. He took his expertise abroad sharing his experience with colleagues and patients in the Gambia. There is no question of his contribution to treatment of prostate cancer but the overwhelming impact of his work will be on the men who have benefitted individually. Because of his determination to share and to teach that impact will continue far into the future and beyond the boundaries of his career. Sean is part of our life because he had set up and was lead clinician at Southport and Ormskirk Hospital Trust when Tom was diagnosed and treated.

Sean’s death is a terrible example of the unpredictability of this cancer. He knew all that modern medicine knew about Prostate Cancer and still he did not realise he was living with it before it had advanced to the terminal stages. So by all means read the literature, listen to advice but think about getting a PSA just in case....

Away from the “shop front” it is perfectly clear Sean was a popular and vibrant friend and colleague. His family will have much to treasure and our best wishes go to them all as they come to terms with his loss.

And there was more

Gorgeous afternoon so I couldn’t help getting out there to make a whole weekend of it. Total collected over 1.5 miles of Long Lane in Bickerstaffe is 7 bags. Have had plenty of support, particularly from passing cyclists with several calling out best wishes. I only hope they took note of the message – be aware of your prostate.

Lesley, whose family farm that area, pulled over and very generously made a donation which will be passed on to Prostate Cancer UK. She is well aware of the issue of litter along that road. Apparently, her mother in law regularly used to go out and pick up a bag of rubbish and Lesley wanted to express her appreciation of the collection. She also took a Know your Prostate leaflet to pass on to her husband. Lovely lady it was nice to meet her.

I’m a bit disappointed no one so far has made an offer for the bag of potatoes I was given last week. Maybe 25kg was too many for most households these days. Offers will still be accepted until midnight tonight but assuming I do not receive any I’ve been thinking about how to put John’s gift to the best use. Among the ideas are to donate them to a local lunch club. This appeals because many of the beneficiaries will be older and as we know incidence of Prostate Cancer increases with age. However, no decision has been made and I would really welcome any suggestions you may have.

It's 50! Why not check September's accounts?

Long Lane, Bickerstaffe is a ... long lane. I use it quite regularly and have been planning to take the action over there for some time. So it’s the project of the weekend. 4 bags so far, the first 2 of which took me to the 50 bags milestone! It doesn’t feel like the kind of achievement to celebrate but hey, I can’t help a smile or two. 

4 black bin bags standing on the verge if Jan went out collecting 

there'd be more and more! (To the tune of 10 green bottles)

Of course, those bags don’t count towards the September accounts which are as follows

Bags collected   16

Leaflets given out     19

Posters       1

Income    20p

Incidentals     1 x 25kg bag of potatoes

Sessions     9

While busy today I met a gentleman who pulled over on his bike to find out all about it. He was appreciative of the Clean up Prostate Cancer project and is very aware of the importance of keeping an eye on his PSA. 2.8 is within acceptable levels for a man approaching his 80^th birthday provided there are no other danger signs. It is natural for PSA levels to rise slightly as you grow older and in many there is no reason for concern. However, age is one of the triggers for Prostate Cancer with the vast majority deaths being among men over 70 years of age. There are plenty of reasons for this but they should not include that PSA checks had not been happening resulting in the initial diagnosis coming when the cancer had already spread beyond the gland.