I love this community, which is why I am still here nearly nine years after graduating from C25k and several weeks after having to announce my retirement from running for health reasons healthunlocked.com/couchto5...
The keen eyed amongst you will also have noticed that I have failed totally in my effort to move more into the background on the forum, as I hate seeing questions go unanswered and I still get inspired by all the new runners discovering their true potential and want to offer encouragement. If I can still offer advice,then I hope it will be received in the manner in which it is offered, despite me now being a non runner. As I said, I love this community.
This is the first of a series of posts that I hope to write, written very much from the perspective of someone living with cancer, but reflecting on the similarities between that journey, the journey of becoming a runner and also the journey of life. Each of those journeys can have its daunting challenges but each one can have its joys and triumphs, if approached with positivity.
I followed this community from the outset of my starting C25k, picking up tips, finding answers to queries and revelling in the support and positivity that prevailed then, as it does now, but it was not until I had reached W9 that I felt moved to write my first post, exposing the truth of the addictive nature of C25k healthunlocked.com/couchto5....
While I had used other forums, generally to ask for advice in respect of IT software and hardware issues, which was very much on an informational transaction basis, I was not, and am still not, a social media user, but this forum was different, being a place of discovery and, for many, wonder at their own long hidden capabilities. The enthusiasm was infectious and I soon felt I had a new family of like minded folk around me in this community, as I learned to become a runner.
An active and inclusive community makes all the members and contributors realise that there are others out there with just the same fears and insecurities as them. It strengthens resolve and accountability as well as encourages, educates and creates a feeling of being part of something bigger than just ourselves. This forum is just about the most positive, supportive, inclusive and welcoming place that any new runner can stumble across………it is the secret for success with C25k.
When, five years ago, I was diagnosed with aggressive, locally advanced prostate cancer, I posted here to help publicise the symptoms of prostate cancer and was overwhelmed with the support that has continued to be forthcoming over the years. At the same time, wanting to know as much as I could about my condition, I also looked in on one of the HealthUnlocked prostate cancer forums.
While you would not expect a cancer forum to be as uplifting as this one, simply because of the subject matter, the forum I looked at gave me one of my darkest nights since diagnosis and taught me a powerful lesson in making sure that responses on any forum take into account a wider readership, not just the original poster being replied to. The OP in this case was worried that his Gleason score of 7 would reduce his life expectancy significantly. Gleason score is the measure of aggressivity of prostate cancer, as defined after testing of biopsies. Anything over 6 is considered to be cancer and 10 is the top of the scale. The sole respondent did a great job of reassuring the OP, by saying that 7 was relatively low and that he should count himself lucky, as anyone with a score of 9 or 10 would have a very much reduced life expectancy.
My Gleason score was 9.5.
Having believed that I had come to terms with my mortality after initial diagnosis, I found myself having a sleepless night worrying that maybe I was in denial of the truth about my condition. It was a very black night.
The following morning, I pulled back the bedroom blinds to be met with a crystal clear blue sky and a swift swooped exuberantly past the window. In that instant I thought, “Well, he is back again and who knows, maybe I will be back again next year.” I realised that in fact absolutely nothing had changed about me or my condition since I had read that post. I could wallow in despair or I could continue to live the rest of my life as happily and fully as possible. While I need to know possible outcomes and maybe prepare for them, I will only permit myself to worry about them when they actually occur, not that they may occur, otherwise life can be a totally unnecessary misery. This can be applied to life in general, not just to those with critical illnesses.
The HealthUnlocked prostate cancer forums, can and do offer good advice and support, but I would suggest to anyone needing advice about cancer to look at the communities and forums run by the major cancer charities, such as Macmillan and Cancer Research who have well moderated sites with access to qualified specialist nurses and are available to family and friends, as well as those who are living with a cancer diagnosis. There are also many charities dealing with specific cancers and also local ones, who provide wonderful services and make you feel part of a community, even if it is one you would rather not belong to.
Many of these charities, along with the hospice charities, receive large donations to their funding from the running community, by organising charity fundraising runs of all distances, which many on this forum have taken part in over the years. From all those who are living with cancer I say a very big thank you.
When I was last hospitalised, about six weeks ago, I realised that the NHS is also a wonderful community, with staff at all levels from porters to consultants all working for the best possible outcomes for patients. It also suffers from huge inefficiencies and wastage, but if only we could apply that overarching aim to do the best for all, to our own civil society, then perhaps we could live in a happier, less fractured world. Our party political system is designed to divide and rule us, by offering us disparate views of the way forward, creating electoral campaigns around these divisions and then, after one side has “won” by getting more votes than the other, our new leaders invariably say “ ….And now it is time to unite the country behind our vision”. A vain hope, that might well have been better addressed by finding common ground and consensus in the first place.
I will avoid getting political, but I think we can all agree that community, whether virtual, local, or national is hugely important for our well being. By becoming a runner you enter the wider running community and can take part in events from parkrun to those wonderful charity events that I already mentioned. My parkrun has regular work parties to maintain the tracks in the grounds of Killerton House, enabling even greater involvement with like minded folk.
In a book by Rob Hopkins, From What Is to What If, he mentions the suggestion that depression might be far better understood and treated if it were called disconnectedness. Many depressed people find great solace, not only in running, but in being part of a community. Nothing is worse than being given medication and left alone to your own devices.
By and large, runners are a very welcoming and inclusive band and if we all continue to support one another then we can continue to spread the word that running is good for everyone and actually change social norms by others seeing runners as being normal folk, not just slim, trim, young gazelles.
MEDICAL UPDATE.JUNE 30 2022
Many have very kindly inquired about my progress and I am happy to tell you that things are moving along quite nicely at present.
Earlier this week I saw a physio as I wanted to check out what was safe for me to do and what was best avoided. I was surprised when he said that there was no real reason why I could not start running again. I stopped because the increase in pain in my back seemed to coincide with running, but it may not have been directly responsible and might just have been the progress of the disease. The vulnerability of my spine, which is riddled with cancer metastases, means that I am very unsure about this advice, but who knows, I might just go for a walk with my running shoes on and try a few short intervals.
Also this week I had my second Radium 223 injection, which is aimed at halting progress of bony metastases. This has coincided with an increase in pain, but I am getting pretty competent at balancing the analgesics to enable fairly normal activity. Recently I managed a 9 mile walk and a few ebike rides of about 16 miles, so am keeping fit to a degree, although I do have to have longer rest periods than in the past.
I am enjoying this summer and I hope that you all are doing the same.
I might not be doing it, fellow community members, but keep running, keep smiling.
Written by
IannodaTruffe
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I have just watched Deborah James podcast...her mantra was 'keep on dancing' and WOW, she did just that....a truly inspirational lady. I am as inspired by your posts with ' keep on running and smiling'. Thank you.
As I have said above, there might just be a little bit of experimentation in the running department, although I do need to be realistic. So while I am still smiling I may be running......
Despite being in the latter stages of my cancer, I still have plenty of blessings to be grateful for.........none more than still being physically active. Plenty to be positive about.
I am very predictable and as you say, this community is very special. I am not sure that I would have persisted with running after injury had I not still been following this forum.
Welcome back, it’s so good to see you on here again. I hope you don’t mind but I’d like to dedicate one of my miles to you when I do the London Marathon in October as I’ll be raising money for Cancer Research. You’ve been giving me great advice since I started running 4 years ago and I can’t think of anyone more appropriate to dedicate a mile to.
I’ve got a list of friends, relatives (including my mum and my father in law), a couple of famous people (couldn’t leave David Bowie off, and Deborah James will probably get a place too), all who are fighting cancer, survived it or who have had their lives taken by it. The list was, sadly, too easy to compile, but I still have a few gaps that I’m thinking I may use to raise sponsorship with.
I am so sorry that you know so many people who who have had cancer or still have it. My husband and I thought through those we knew and only came up with 5. Each one so precious.
Such a good idea to dedicate each mile! 😊🏃🏻♀️🏃🏻♂️
One in two people in the US and UK will be diagnosed with some form of cancer in their lifetime.
It is estimated that up to 80% of men in their 80s will have prostate cancer, although many will never present to their doctors, nor be diagnosed, so it is probably more common than your experience suggests.
Thank you over61, I’m hoping that thinking of someone for each mile will be the best sort of distraction. I’m going to pin the names somewhere as I go along. It didn’t affect my family and friends’ circle for so long and then it kind of snowballed. It’s still not that many thankfully but any is too many.
Health is so special. It is a challenge when any part of it goes and clearly the size of challenge is dependant on the cause.Now I am wondering what you mean by ' pin the names somewhere '. I do hope that your training is going well.
Thank you over61, it is so far. Mileage and strength is building up nicely. I’ve got an idea whereby I pull a name out for their mile and attach it to my running top as I go along, so by the time I’ve finished I’ve got 26 names attached to me who can complete it with me. Just thinking of ideas at the moment.
Never far away Tim, good to hear your update and that you are being active and out there. Another inspirational post, from someone that makes these forums so special.
p.s really enjoyed reading your first ever post...c25k eh..who knew?😊
You are, without doubt, one of the best inspirational and so very authentic people I know. I wish you every good fortune, resource and comfort as you continue to show what courage can truly look like whilst dealing with your illness.
Great post, thought provoking and positive as usual..
Two questions.. have you thought of writing a book/memoir, of some kind, a story linking all your best posts? Starting, of course, with your very first one which I have only just enjoyed reading.
And, is your wife still running? I would be interested in her point of view on life, running, and everything that has happened to you too.
Hi Susi.I really don't think my writings are worthy of any further development. The posts are all there for anyone to trawl through, if they really want to.
My wife still runs and I only feel mildly envious when she heads out. It has provided her with time and space to stay sane under the pressures that we have prevailed over the past few years.
Life goes on, so it is best to make the most of it.
I have not long discovered c25K (graduated a week ago) and joined the forum a few weeks into the programme. I am not a social media kind of person but can't begin to put into words what this forum means to me. You are an inspiration to us all IannodaTruffe. Your posts are not to be missed. Not only full of advice on running for us newbies, but you have also such a sage look upon life.
I remember being inspired by posts on this forum when I first discovered it. Ordinary folk doing, what seemed at the time like extraordinary things, such as completing C25k.
Long may it maintain that ethos and power to change people's lives.
I am certain that I speak for everyone when I say that we all love reading your posts and replies Tim, and have all benefited greatly from your advice. Your commitment to this forum and the time you must have spent researching your posts more than qualifies you to carry on commenting whether you are running or not - keep it coming! 🙂
Hi, if only politicians demonstrated such humanity and insight, they could learn lessons from you. Killerton was a regular visit as I lived in Exeter for over 30 years. Knowing now(!) you have an input brings back the thought of an inspirational run rather than walk around the grandeur of that landscape. It might just be on my newly discovered goal, yet to tell the wife, of starting an A-Z of Parkruns! I'll hopefully tick off my second tomorrow, which was sort of a maybe I'll get up, but now I definitely will! So I'll be running in the remnants of last week's revelry along the banks of the River Medina! Having an illness is such a deeply personal experience that transcends thoughts and feelings, and can be crippled by the mind, if those two competing aspects of personality become boxed in, locked in. Health Unlocked, the contributions of others and especially yourself, provided that bridge for me to acknowledge my feelings and carefully consider the evidence around where my illness, stroke, had left me. And for me C25K was the bridge. It is fundamentally physical, but overwhelmingly psychological! Take care and thank you yet again for giving me a lift at the start of the day.
So glad to hear that you are keeping on top of your condition and continuing to find challenges in life. I have come across others who have really sunk into an abyss with their illnesses from which it can be extremely difficult to escape. My mantra is "Celebrate what you can do. Don't mourn what you can no longer do."
As many others have said IannodaTruffe you are truly an inspiration to us all. Your help and advice along my rather rocky running journey have, and always will be hugely appreciated 🙏
You know what IannodaTruffe , I looked at the tags that HU automatically attached to your post and thought how utterly ridiculous they are. Yes, they're perfectly logical in their own medicalised universe, but they're nothing to do with the real meaning of what you wrote.
No algorithm could ever capture Da TRUFFE. Your contributions are key in weaving and maintaining the fabric of this community Tim, and I hope you'll stick around for as long as it remains the best thing for you. 🤗
Having myself been mystified by the tags in the past I am now very aware that they might in fact draw in non runners who are searching for info on cancer, so I have attempted to structure the piece to keep them on board and show that having cancer does not preclude exercising.
So pleased to hear that you posting again ( yep I did notice that you were still hopping in and replying when needed) I have been reading your thoughtful and thought provoking posts since I started on this running lark just over 2 years ago. Only a couple weeks to go until the 2 year anniversary of my c25k anniversary-I can't believe I am still plodding away!You and other community members bring a sense of inclusivity and belonging which, when combined with the actual running, have provided so many of us with improved physical and mental wellbeing through the humps and bumps of life.Thankyou!
What an inspiration you have been, throughout my running journey. I stumbled into running as part of my recovery from Breast Cancer, and then stumbled into this forum and it was one of the best things I could have done. Although I've been absent for a while I still run with my C25K running buddies in my mind.
Keep up the walking and if you find yourself doing a mini interval on your way then so be it. Wishing you all the best.
I can understand why your scan frightens you, but I never look at them like that. Information is power, in my book, and the scan will, good or bad, give you more idea of what you have to cope with in the future.
I hope it shows good results, but know that you are strong enough to cope, whatever the outcome. We all have incredible inner resources that we can draw when necessary.........a bit like our ability to run, which most of us live large parts of our lives not even knowing about.
You know you can always share with me or the forum, if it helps.
So much of what you say feels familiar to me. "While I need to know possible outcomes and maybe prepare for them, I will only permit myself to worry about them when they actually occur, not that they may occur, otherwise life can be a totally unnecessary misery."
I can remember sitting with my dad and his oncologist. She asked if he had any questions, anything he wanted to know. He said, "well I don't want to know how long I've got, if that's what you're saying " and he never asked. He just lived his life, until he didn't.
I'm glad you got your runners on and are enjoying the beautiful countryside where you live.
I have never asked for a formal prognosis, but I have widely read the literature in respect of my particular variations of prostate cancer, so am well aware that I am nearer the end than the beginning, but each day brings new joys and something to be grateful for living for.
Great to see you still posting you have given great advice and your replies always eloquent. Hope you can run a little more even a short trot just for your MH. But you are still going and positive about what you can do ! Great post more power to you 🙌🏻🙌🏻
Thank you for this... you are still very much a part of what makes this the Community it is.Thank you for staying here with us... and popping in as and when you are able to.
I always feel a lift in my spirits when I spot your replies x
Apart from running, your posts always put a smile on my face because 1, it’s lovely to hear from you and 2, because of the inspiration you are….your posts are always a gush of inspiration…your positivity is so heart warming. I know that you can’t resist this forum, I know how much you love being a part of it & I know that you love reading about everyone’s journeys whether they’ve just started or whether they’ve been plodding for years…you’ve given so much to so many over the years and still continue to do so and now, when you could’ve so easily just disappeared from here, you’re here sharing the hardest part of your life with us…and I’ve read it whilst giving you a gentle hug in my head.
I’m glad the summer is here, whether it’s raining, sunny, warm or chilly, it’s here for us all to enjoy & I know you’ll wake up every morning with the same positivity that you fell asleep with the night before.
Thank you for staying, you’re one of the reasons this forum is like it is…there are people on here who’s names will be here forever & yours is one of them.
It would be wonderful if you could do some little intervals but also, you have all the runs you have ever done safely tucked away inside your head if you don’t manage it. I’ll be running later on and I’ll take you along with me my lovely friend xxx
Lovely Bev, how could I ever willingly leave this forum when there are so many warm and supportive folk, just like you, who continue to bolster me, as I still hope to do for others.
As the image says, community is strength. We are stronger together.
I have always loved reading your replies to questions on this forum. So glad you can't resist still giving advice. I very much admire you being the wife of someone whom has had multiple cancers and is now at the stage of managing his cancer rather than curing it. He too is doing quite well considering. He always says 'well I'm still here'. Glad you are enjoying life.
"I am still here." is just about the most common reply from me when asked how I am, which avoids going into gory details.
I am well beyond cures now, but life still has to be lived, so I assume that your husband is in a similar situation to me. I wish you both the richest and happiest experiences that you can pack in.
This forum has always been a great distraction from my own issues and I have learned so much from others over the years.
So good to read your post covering your medical update among many other topics. Like others I also really enjoyed reading your first post. You write so well. I wonder whether writing was part of your career. Your first post led me to wonder what proportion of C25k participants are smitten from the start, what proportion gradually feel good about running and even what proportion don't complete the plan at all.Clearly enjoying what you can is something you are good at, worrying about things that may never happen is a very sad way to live.
Your comment about runners being just slim, trim, young gazelles made me laugh. I find these running forums often make me laugh alongside being full of advice, encouragement and help. I appreciate all these aspects.
(Apologies for such a slow response.. like my running, I’m s-l-o-w!!) 😬I just wanted to thank you, Tim for another wonderful, insightful and truly inspiring post.. 🙏❤️ ..And to thank everyone here for their sincere and beautiful comments too. Each and every one of you help to make someone’s day a little better, their hearts a little lighter and their courage a little stronger.. and I, for one, am truly grateful. 🤗🥰
Here is a little gift back to you all.. and especially for you and your family, Tim; sent with Love and Light.. ☺️ Donna x
"Inspirational" is not adequate enough to describe the influence you have had all these years, Running and non. I, and I bet everyone else, is glad you are still sharing your wisdom, strength and hope. I wish you every possible good thing in your future.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
👍🏻
One more run but will it be graduation?
One run to graduate! Celebration?
Week One, Run One! (kit advice too, please)
Whilst not a run, an era about too close
Update - week one, run 2
