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TOPIC: Welcome to Kunena!

Welcome to Kunena! 05 Mar 2019 22:46 #1

Hi, I’m Cal, I’m a 47 year old hobby runner and I’m currently 2 weeks into 5 weeks of chemoradiation therapy for stage 3 colorectal cancer. Following my treatment I’ll be having surgery, with a temporary stoma, and possibly more chemo after that. I’m currently continuing to run short distances in my work lunch break a few times a week (3-4 miles) and was very pleased to manage a 10.5 mile fell run at the weekend.
I’m currently feeling ok, bit nauseous and tired, but exercise definitely makes me feel better. I’m trying hard to factor in more napping time to allow me to recover after my runs, as I do get quite tired and woozy at times.
Really keen to be part of a forum where exercise is seen as the norm, as lots of very well meaning people are being very protective and telling me to be careful and take it easy, when everything I read seems to be saying that lots of exercise is beneficial. I also find that at the moment the endorphin high I get after exercise is great as a temporary distraction from nausea and fatigue.
I’d be interested to hear any other experiences of exercise throughout pelvic radiotherapy, and how long I can expect to be able to exercise before side effects get in the way.

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Welcome to Kunena! 16 Oct 2018 08:58 #2

Very similar view regarding the roads JC..... too many recent near misses caused by questionable driving skills, very poor road conditions and I've given up riding my TT as I'm no longer stable on it :( - 99% of my riding now is Sufferfest turboing. Have flirted with Zwift but I can't get on with it and don't find it motivational at all, unlike sufferfest

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Last edit: by MadeUpName.

Welcome to Kunena! 16 Oct 2018 07:52 #3

Love sufferfest! I'm actually a bit of a chicken when it comes riding the roads so do the majority of stuff indoors with some club rides alternate weekends.

SBM, I think your swimming will come back - you just have to be patient with yourself. I actually gave myself a nerve injury ten days post op on the opposite side to where I was operated on! The triceps was not firing and I couldn't feel the tip of my index finger (still can't). I was devastated but...it has gradually recovered on it's own. I'm swimming again pretty well albeit with a bit of a discomfort on my operative side but that is getting better every session.
Re Lanzarote, MUN has hit the nail on the head.
I went to Lanzarote (pre-diagnosis) telling myself that I should be proud to stand on the start line, it didn't matter if it got too tough or I had to pull out, to be standing there was an achievement in itself. This resulted in me enjoying the majority of it. I loved the tough cycle and didn't push myself at all - I wanted to enjoy the closed roads and the amazing scenery and I did that. The marathon was a struggle (I think it always is) but I'd come so far by that stage that I really did just want to finish. You've plenty of time to think about it. The entries very rarely sell out as far as I know.

It seems so far we are the only three on the forum. We perhaps should start a new thread...any ideas?

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Welcome to Kunena! 16 Oct 2018 06:15 #4

Hi Jenny C (or JC if I may) and SBM - much of what you both said chimed well with me. I had a giggle at the juggling career with hobby comment because whilst my employer would like to think I fitted my training around my work commitments, I think in reality, it was the other way around. The photo I will try and attach is of my TT bike set up on a turbo trainer in my Indian Hotel bedroom following Sufferfest videos on my iPad or the TV. I travelled back and forth to Chennai for a couple of years with them. Not ashamed to say that I have become a bit of a Sufferfest tart (and bore, I'll refer to it a lot) as it has helped and motivated me through and to both the peaks of my fitness in 2012-14 and got me through the potentially scary parts of my treatment 2016-2018. When I had 6 weeks of daily radiotherapy in 2016 on my head I preceded every session with a sufferfest ride at 100%, starting and ending the treatment period with Violator :). When it came to surgery 3 weeks ago to resect a new grade4 growth behind my right temple, again it was Violator that saw me away.

Well done on staying active and I hope the swimming and running go to plan.....both off the agenda for me at present due to infection risk (on chemo now) and falling over, so I'm sticking my turbo, indoor rowing...have a concept2 rower (Sufferfest can do this as well if you know how!! - been working with them on getting this going)) and yoga as I'm as flexible as an RSJ.

SBM, specifically regarding your Lanzarote comment, I go by the maxim, if you think you can or you think you can't, then you are correct. May I suggest for your "weak swimming shoulders" some yoga strong arm pose. :)

Speak again soon!!

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Welcome to Kunena! 15 Oct 2018 16:08 #5

hi MUN and JennyC

Jenny thanks for getting back to me on my other post, not sure where we are supposed to hang out. A little about me, I'm 45 year old married mammy of 3. I've a daughter aged 16 and two sons aged 13 and 10. I’ve been into Triathlon for almost 10 years now, I've completed Austria IM twice and frankfurt once. I am thinking about lanzarote next year but not sure if it is too much, given I can only swim 150-200m at a go max at the moment, my shoulder fatigues so quickly.Jenny, that's a very impressive time for Lanza, well done you!

MY diagnosis in march of this year was secondary melanoma unknown primary source. It took about 6 weeks to get this final diagnosis.

I had surgery in March to remove a large tumour and all 12 lymph nodes under my right arm followed by radiation. My skin was really bad with radiation and I really could do very little bar turbo and some short rides. I'm not on any treatment right now but back for scans and checkups over the next few weeks, so anxiety up again. I'm suffering with some swelling in my arm and trying to figure out what is working and not working for me. I am usually good at listening to my body, I'm finding it harder to work out now. Would love to chat to you guys on this and Jenny, really happy to hear your physio is recommending swimming. it's motivating me to jump in the pool tonight :-)

I'm based in Dublin, Ireland

chat soon


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Welcome to Kunena! 15 Oct 2018 14:08 #6

I'm JennyC. :-) That's actually my name.
I'm 37 years old and was diagnosed earlier this year with Stage 2 Breast Cancer. I've had surgery and radiotherapy and am on hormonal treatment now for the foreseeable future.
I'm a one-time Ironwoman, completing Ironman Lanzarote in 2017 in 13:24. I planned to do Ironman Copenhagen this year but those plans were halted temporarily whilst I underwent treatment.

I love sport, I always have. Exercising is very much part of my anatomy. I'm not the fastest and I have been inconsistent with training over the years whilst I've juggled my career with my hobbies but having cancer has made me feel like there's a time limit on everything! When I think about it harder, of course there's a time limit - everyone has a time limit from the moment they are born!! You only live once.

I finished radiotherapy at end of July and remained on my turbo throughout all treatment. I've just recently got back to jogging and swimming and starting to feel a bit more like myself again. I will never take exercise for granted again.

I'm from Northern Ireland, born and bred in Derry City and now living in Lisburn and working in Newry.
I have a partner called Ruth and two cockapoos and I'm very grateful to have the people I have in my life also. I fear that sometimes people forget about the other half and close family - they go through so much when their loved one gets a diagnosis of cancer, yet they have to be so strong.

This website is going to be amazing. I can feel it in my bones.

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Welcome to Kunena! 14 Oct 2018 09:34 #7

Good morning all, a bit blurry eyed after staying up to watch all the coverage from Kona 2018 last night and this morning. Congratulations to the winners and very notably Lucy Charles - the racing was for me quite inspirational, having always wanted to break 10 hours for Ironman triathlon distance (becoming an Outlaw in 2012 with a 10:38 being as close as I got) to see the mens winner and second place both finish in under 8 hours is in my mind for that course mind blowing.
Answering a who what where why question....here goes....I'm 55 and my real name is David Stopher and my online name since about 2006 has been MadeUpName (or MUN for short) after I joined the Nike & Apple cooperation to form Nike+. It was the first time I needed to create an online username and after discovering that a multitude of David derivations were gone already I literally Made One Up and MadeUpName has stuck ever since.

I have a grade 4 Astrocytoma in my right temporal lobe that reaches down to my Thalamus, have had 6 weeks radiation treatment, just had a partial resection on a piece of new aggressive growth that was removable (the main body is not) and this week I started 6 months of tablet form "home" chemotherapy.

Why am I here? - Well I figured why not.....I have cancer and I want to maintain a decent level of fitness so if I can "go somewhere either physically or electronically and learn from others who have the same objective or communicate with others who are beginning or want to start a similar journey then I'm happy to participate.....Its a similar ethos to why I started a blog after being encouraged to do so by work colleagues. Sharing experiences is for some people a super way to learn.

Finally the where....I'm in Cold Ash, a small village in west Berkshire with a lovely wife and 2 fabulous grown up sons and I'm immensely proud and grateful for all 3 of them for putting up with me.

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Welcome to Kunena! 04 Sep 2018 16:24 #8

Welcome to Kunena!

Thank you for choosing Kunena for your community forum needs in Joomla.

Kunena, translated from Swahili meaning “to speak”, is built by a team of open source professionals with the goal of providing a top quality, tightly unified forum solution for Joomla.

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