Life after prostate cancer

Moving on still further
March 2009
Having decided to stop blogging on this subject some time ago, I've now decided that enough has happened to justify another post.

It is now over 6 years since my diagnosis and all is well; indeed, better than before. I have found the whole process to be life-affirming! I no-longer consider myself depressed and I feel more affirmed than for a long time; I spend half my time voluntarily applying my professional skills in a major Cardiff charity and have also become a church warden. My hairstyle has returned to its pre-chemo abundance.

I had my 6-monthly check-up this morning. My current PSA reading is 0.3 down from 0.5 last August! I'm tempted to put this down to increased libido and thus increased sexual activity.

I also want to say that I think the current Macmillan nurses advertising campaign is ill-advised, "bigging-up" cancer and its emotional effects. Yes, (late) diagnosis can be devastating but this advert will, I think, intensify the "stiff upper lip" problem we have in Britain. Too many people here ignore symptoms as they fear the consequences of finding out they have cancer or, even more stupidly, "don't want to be any trouble" and think they would have wasted NHS resources if they go to their doctor and it turns out not to be serious.

Apologies to anyone reading this who thinks I am being callous, I am not but I am cursed with a very objective outlook on life. Be assured that I would never say this outright to anyone I know to be affected by this issue and all those with cancer have both my empathy and sympathy.

Moving on
March 2009

I have decided that I will not make any more new posts to this blog. It will remain but I consider the phase of my life that it covered as over.

I now want to use my experience to take part in the debate about relationships between patients and the health industry. To that end I have created a new blog over on Blogspot: ePatient—the Empowered Patient.

Thanls for following me so far an I hope you will come and follow me on Blogspot.


Good News Following Checkup
3rd Anniversary diagnosis

I had a 6-monthly check-up last Thursday. To my surprise, I actually saw my oncologist, Dr Barber. I have only seen him at key points early on in the process. After a discussion about my general health, he offered me the opportunity to come off the hormones, assuming that the result of the PSA test done that day showed that the level is stable, around 0.1. I accepted the opportunity gratefully!

I was surprised by this because I have floated the idea that I might come off the hormones several times before when it was clear that my PSA level was dropping rapidly but had never been given any encouragement to think that it was possible. However, it would appear that once three years have passed then stable PSA level means the hormones can be dropped. I have just rung his secretary to check on the situation; my PSA level is still 0.1 and I have the go ahead to discontinue the implants.

I actually have an appointment at my GP's on Thursday for another implant but I will not submit the prescription and go along to tell them the change and to let them know that I need to have the PSA tests ready before my next hospital checkup in four months. The frequency of these checkups has gone back up so that they can keep a closer eye on my PSA level. They expect that i will go up a bit but should stabilise at a level well with the norm for my age. If it continues to go up then I will go back on the hormones.

As the testosterone-suppressant clears my system I expect that my libido will increase, my head hair could decrease but body hair increase (back to shaving every day) and I'm hopeful that I will lose some weight. We (and my wife) wait to see how these things improve.

Some anniversary thoughts
3rd Anniversary diagnosis

September 3rd I kept as the third anniversary of my diagnosis (new readers start here). I celebrated with a short ride up the Taff Trail, crossing the river into Morganstown and coming back through Radyr to Llandaff Cathedral and going down to the Bay via the west bank of the river. I had a pleasant lunch at Coffee Mania and came home. About 10 miles in all and the hill climb in Radyr went surprisingly well. I kept up a 62rpm cadence and wasn't quite in my granny gear.

I thought I'd try to sum up the last three years.

Firstly, and most surprisingly, it has been a positive and life affirming time. I knew that a positive attitude was important (that is why I kept this blog)and that attitude rubbed off into other areas of my life. Ok, my low-level depression has reasserted itself at times but I have made many new relationships via social media and deepened many of my real world relationships. I took the decision to retire early and I'm mostly enjoying that but I'm the first to admit that I'm a lousy house-husband. I have recently started as a volunteer at a local organisation offering accessible cycling opportunities (PedalPower) as part of a bargain with my wife that if I get out more I'll be more productive at home. I would certainly say to all those who have recently received a cancer diagnosis: "Don't despair, cancer survival rates are increasing and maintaining a positive attitude is important." For other blog posts on this topic see: The Word is Hope", LiveStrong.

Secondly, my experience of the NHS as an oncology patient. Again all good. Admittedly, by taking part in a clinical trial I have had more aggressive treatment and perhaps a closer relationship with the various people who have been involved in my treatment. I had an email today advertising a private health company in the UK. It started:

1 in 3 people in the UK are affected by cancer.
If that 1 happened to be you, we can help.

Leaving aside the fact that their targetting wasn't very good, I would say to anyone else who received this: "Ignore it". NHS cancer care is fine. Yss, cancer survival rates in the UK are worse than in many other countries but the NHS's standing has improved in recent years and much of the difference is perhaps attributable to the British stiff upper lip and "I don't want to be a nuisance" attitude. If you are at all worried about any symptoms, be it a dodgy looking mole, blood in your stools, an itchy weeping place on your nose—go and talk to your doctor about it! They will either put your mind at rest or start a process that can only benefit you an those you love. Don't die of embarrassment!

Thirdly, LiveStrong! Lance Armstrong is my hero! He is the absolute epitome of the athlete and sports person (not always the same thing) and a cancer survivor extraordinaire! His LiveStrong Foundation is doing a huge amount in the States and across the world to address the issues surrounding cancer; the stigma attached to its diagnosis in many cultures, the creation of a worldwide community of professionals in the field and much else.

Silent Running
March 2009

I know I have not finished writing up the Lon Lâs Challenge. After finishing the ride I've had a holiday in Malta with my wife, she's been ordained priest, I have taken part in three performance of a 30minute community opera at the Wales Millennium Centre and then it has rained an awful lot. I have either been too busy or too depressed by the weather to either finish off the blog or to actually ride my bike seriously.

Overall the bike ride was again a wonderful experience.Those who also did it last year were impressed by how much fitter I was. I only walked the longest hills and even then was still capable of pushing my bike. Last year at the worst times somebody else would push my bike, making it easier to trudge up the hill. The weather, except for the last day, was wonderful—not too hot, very little adverse wind and no rain. On the last day we wake to a howling gale and driving rain. Worse the wind was out of the south and that was the way we were heading for the first ten miles or so. The rain eventually stopped but then the wind swung round until it was against us going across Anglesey. I don't like Anglesey as cycling territory, It is unpleasantly undulating and the Trail meanders a lot. You can see the promontory of Holyhead away in the distance but it seems to get no closer. We arrived at the Ferry Terminal at almost 2000! I was ready to give up about 15 miles out but Seb,in particular, kept me going.

Technologically, things were a bit disappointing. 3G Mobile phone coverage through Central Wales is dreadful so live tracking just didn't happen. I've got the satellite data saved on my phone and I'll upload it later but even that coverage seemed patchy and there are big skips in the path.

Fund-raising was quite successful. I will be closing the account this week. The total is well in excess of £1000, not as much as last year ut still respectable. One or two people haven't coughed up yet so if any of you reading this haven't paid me yet I'd be grateful for a cheque.

The Evening of the Third Day
March 2009

We are now in Corris and although there is no broadband in the hostel I'm hopeful that if I go across the main road to the little bit of garden I might get lucky as there is a reasonable mobile signal. So I'm writing this offline in the hope of being able to cut and paste it into LJ in the morning. (It didn't work though, I'm catchig up on this back home!) There are too many gnats about to try it this evening. I was getting bitten to death just ringing home.

Today has gone really well, I have not yet cheated at all, not even to the extent of having somebody else push my bike while walking up hillmdash;there's not even been too much walking up hill! The weather today hasn't been so good. It started off sunny and warm but had clouded over by mid-day. However, it hasn't rained and the wind has mostly been helpful.

The morning session was a but tough with my legs not really wanting to push and there was a lot of really up and down work out of Rhaeadr as the single track lane runs up and over lots of truncated spurs that the river has cut down into. However, after a pit stop in Llangurig on te A470 they started to go better. This probably had something to do with the amazing banana cake given to us by our host in Rhaeadr.

The run through the Severn forest was pleasantly undulating. If I can hit an up-slope with plenty of speed then I can often get up it by attacking in a high gear but once I've run out of momentum and have to drop down the gears then I'm often doomed to get off and walk.

The advantage of doing the route from the south is particularly evident on this stage as we began the climb to the highest point on the whole route. It is much easier as we started from much higher. The layby at Dylife with the amazing view arrived much more quickly than I expected and the rest of the climb wasn't too steep. I indulged in a Zip-Vit energy gel from their free sample box and it seemed to do the trick. We rested at the top and partook of more banana cake and then strted the amazing 1700 foot descent to Machynlleh. It's rather scary at the top with some very steep and bendy sections. I rode the brakes quite hard down this section but later was able to let the bike run freely, which it does very well. My top speed was 92km/h or 55mph!

The stretch from Mac to Corris was longer and hillier than I remembered but again had a nice descent in Corris. We arrived at the hostel quite early giving time for a relaxed shower, several cups of tea , two pints of Black Hand Porter from the Purple Moose Brewery in Porthmadog and a game of Killer pool. I was not the first to go out.

The evening meal was again absolutely ace; chicken,ham and leek pie with roasted vegetables and two desserts. Not a choice beteween two desserts but summer fruit sponge pudding and a trifle that knocked last disaster into a cocked hat!

We've seen more kites and the birdsong has been absolutely amazing.

Day 4 will involve another climb to over 500 metres (1650 ft), first thing in the morning which will be tough as my legs don't seem to get really going for a few hours. The a beautiful run across the tops before we swoop down into Dolgellau. Then it's along the river to the Barmouth bridge and then some more ups down to Harlech and Penrhyndeudraeth and on to Porthmadog.


Morning of the Third Day
March 2009
Day 1 was extremely enjoyable and relatively short although we paid for it yesterday. The weather so far has been incredible; I have never seen the Welsh countryside looking so beautiful. The group dynamics are working well, there are two of us who did it last yhear and we've ended up rooming. We also have the indomitable Nan, a very welsh lady in her seventies, she did the challenge two years ago.

The lowlight of day 1 was getting a puncture in my brand new rear tyre near Pont-y-gwaith—a 1 inch rusty nail sticking straight out. BUt with a new inner tube in my bag and the works mechanics of Alex and Emma had the wheel off and the tube in pace in no time.

The pace was so easy at the start tjhat at one point I was 200m ahead of everybody else. We stopped for lunch at Joseph Parry's cottage in Merthyr where we met by Peter Davi in his "oh so last Year"'s jersey. I'd not been beyond Cefn-coed-y-Cymmer going north and it was like virgin territory as the weather so much better than last year. We were also ab;e to take the off road option that was closed last year. Those on road bikes decided to go down the road rather than the old railway track but I decided that I was going to descend what I had ascended last yer. It was a bit disappointing; it's so rough that it is impossible to achieve a good speed—at least without a suspension. Although the hostel was before the dam we crossed the dam becuase the road party had found an ice cream van. It was well=-worth it!. I can recomend the Danyralltwen Youth hostel. The food is excellent. The lounge also has a large Jenga set and we spent a happy and rather raucous hour building the tower. Seb and Alex became the "Jenga Boys" haing lost twice each; Seb is an architect so it was a bit ironic.

Day 2 started with a beautiful inversion in the valley.The run down to Brecon was very easy an we were joined at the canal by Peter. We had a slight route finding problem in Brecon and the climbing started. I was going well and reaching the open land above Talgarth was a great acheivement and the views were fantastic. The pit stop at Talgarth was very welcome. From Talgarth to Glasbury was also pretty easy and we stopped for lunch by the river.

Glasbury to Builth started to get tougher but it was nowhere near as difficult as it had seemed last year in the wind and the rain. Builth brought another pitstop and an icecream each, courtesy of our Illustrious Leader. We set off for Rhaedr full of optimism.

This l;ast third of the stage gets very hard! Lots of climbing above the river and dropping down again which is fun when the ups can be hit hard but ultimately frustrating. Above Newbridge on Wye the old stage coach road sems to go on for ever, then more up and down road before reaching the deicated track that leads into the town. I was spent with 10 miles out.

Howver the food in the Bear's Head restored me.

Getting ready to go
March 2009

So Saturday was it. I finished my training and all that is left is to take it easy this week and it lots of carbohydrates. I had expected to do something long with lots of ascent but instead I did something easy just to get out. The weather was indifferent which didn't exactly motivate me. I eventually got away about 11:30, at least two hours later than usual. Cycled down the Bay and then across the Barrage which I hadn't done before. The tide was full which took away some of the drama bit watching the bridge going up was interesting.

I then went north up the Lon Las taking it easy. I decided to turn around at 1500 and got as far as Rhydfelin. I'd been more enterprising during the week and expanded my circuit out to Cowbridge, which meant dropping down to about 10m and then having to climb back up to about 200m. I had interesting moment as I got near home when I lost both wheels in succession turning left off a major road. I hit a metal inspection cover that was polished to a shine by the traffic. I stayed on but I'm not sure how!

It was at that point I decided that new tyre cases would be a good idea. The Bike Shed had two Bontrager Satellites Hardcase 700C's in so when it stopped raining I took it over and they fitted them and sorted out a few other mechanical issues.

The other good news is that I reached my sponsorship target today, thanks in part to a post I made on a social media site for ex-pat Welshmen in America, A member responded with a donation of £10. Some real life friends then brought it up to £1000 but social media has just taken the lead with a donation from the Philippines!

A hilly trip round my "bro"
March 2009

In Welsh "bro" means "vale" so "Bor Morgannwg" = "Vale of Glamorgan" but it also has a much more interesting psychological meaning: "The area I feel homesick for". I'm using itt in both senses here. My ride yesterday was designed to be as long and hilly as the tougher days on the Lon Las but also took me to places in the Vale that I have not seen for over 40 years.

Some statistics first: Length:67Km or 42miles. Total Ascent: 1950m or 6435ft (~twice the ht of Snowdon!), highest point 363m or 1200ft, Avg sp~11Km/h). So it's equivalent in length to the shortest day on the Lon Las and doesn't reach the heights of even the first day but the total ascent is impressive.

The route builds on the route I tried last week. This time I managed to find the low traffic route via suburban roads to Lisvane (Llysfaen) so that's improvement #1. Also I have got the GPS working more reliably. It then followed the same route over Caerffili mountain ad past Castell Coch but this time I crossed the Taf by the pipe bridge to Morganstown and embarked on a big loop out to the west of Cardiff. Radyr to Pentrebane to Peterston-super-Ely, Welsh St Donats, Llancarfan, St Lythans and Culverhouse Cross(argh!) back into Cardiff. Culverhouse Cross is a huge roundabout giving access to two major shopping areas, the M4 and the link road to the Bay so it is incredibly busy. Next time I may well modify the last section to come into Ely via some more hilly country lanes.

I haven't been to Llancarfan for over 40 years! It was a major centre of Celtic Christianity before Augustine ever came to these isles an St Patrick probably studied there before being carried off to Ireland on a slave ship. Now it's a well off village with swimming pools in the back gardens. I met a class of school children dressed in school issues waterproofs carrying nets and jamjard—a living demonstration of the Foundation Phase in action. This is Wales' primary education revolution placing great emphasis on play and using the outdoors as a classroom.

I've now got the tracking and editing of the routes fairly well sorted. I use to track my progress. If you look at the route as tracked you will see some long straight lines where GPS contact was lost for periods. In one case it was because I went through a subway under the railway but I can't easily explain the others. However, these can be sorted out by downloading the data as a .gpx file and uploading it This doesn't do realtime tracking but does allow the editing of the data and provides the elevation profile.

All in all a very satisfactory day that emulated a day on the sponsored ride. I shall do it again at least three more times in the next 10 days.

Keppoch Street Market Fund-raiser
March 2009

Well we had a good day today at the market and raised £100 or 10% of my target. Thanks to Matthew Dixon for helping Meg to run the stall while I pedalled on the iMagic trainer. The odd thing was we raised much more in direct sponsorship and donations than from the raffle and the competition. The competition was to estimate my total pedal revolutions while riding the 44Km Olympic Poseidon course in VR. Only two people entered but one of them was very close so she got the prize.

I would like to thank Sue the market manager for allowing me to have the stall and to the stall holders who donated prizes:

  1. Voucher for Whole Chicken (£5/£6)—Dickendale Farm
  2. Voucher for mixed Pack of Sausages/burgers—Cig Lodor
  3. Voucher for a mix of Olives(~£5)—The Olive Bar
  4. A box of organic vegetables—Ty Mawr Organic Veg
  5. 3 Jars of Jam & Chutney—Avril’s Country Kitchen
  6. Pack of Fairy Cakes—Lewis Fine Foods
  7. Pack of Coffee Beans—TheCaffeineKid
People were friendly and interested. My time on the trainer was rather long as I couldn't get the feedback from the screen as my laptop wouldn't drive two screens at once (driver problems).


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