I know this forum is mainly used for people struggling with the myriad of symptoms we deal with both during and after this horrible disease and believe me I deal with my fair share but I just wanted to write this post for anyone in the dark time during treatment or post op thinking they'll never get their life back and I just wanted to say you CAN do anything you put your mind to.
I was diagnosed nearly three years ago at the ripe old age of 27 and two years ago had the 'shark bite' op removing 2/3 of my stomach and 2/3 of my oesophagus and this year (2015) I've completed a duathlon (3k run, 17k bike, 3k run) two sprint triathlons (750m swim, 20k bike, 5k run) have signed up to an olympic tri later this year (1500m swim, 40k bike, 10k run) and two half marathons and have also signed up for a half ironman triathlon to be completed next year on my 31st birthday (1900m swim, 90k bike, half marathon run) which I'm going to be using to raise some much needed money for the OPA (I love this forum) the Beatson cancer hospital in Glasgow where I received my treatment (those people are amazing) and Cancer research who were, as I'm sure you all know, instrumental in devising the chemo regime I had both pre and post op.
So anyone struggling, keep fighting, the darkness does lift and although my life is completely changed both physically and mentally you can indeed have a life worth living which in the early days post op when I was struggling with everything I never thought it was possible!
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spanner16
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Well done you. It is always good to hear stories like yours. We all need to know things will get better. I am five years post op and I can confirm the light at the end of my tunnel is shining brightly
I just figured that although life can be 'challenging' at times with our new plumbing it can also be extraordinary and I remember just after my operation and being so ill thinking 'if this is living I don't want to do it!' And wanted to assure people who may be thinking the same thing that it does get better
I find that simply not stopping helps! Ha! I'm an inherently lazy person by nature so I just don't let myself stop - besides sitting down is overrated anyways
I'm more than impressed by you getting through everything I did at 73!! I had it 'easy' being younger and having more energy to fight it, you on the other hand are a proper inspiration!
You have responded brilliantly after this major operation for a person so young . And I agree its important to keep positive and set yourself individual goals That definitely helps with the negative feeling we get occasionally with this condition. We all have different physical capabilities depending on (age and medical conditions) but this positive approach certainly helps. I had my operation 9 years ago and continue to lead an active life. Swimming was one of my activities and after the operation I found front crawl not as comfortable due to slight reflux ect, So now I concentrate on breast stoke and cover the same distance and thoroughly enjoy it. Its whatever suits the individual but staying positive and having something to look forward to( whatever it is) focusses your mind away from the dark feelings we all suffer.
Thanks - I don't seem to have that problem with front crawl luckily, the only time I tend to cough and splutter is when I don't get my strokes right and I swallow a bunch of water! It happens more than I'd like to admit!
Great to hear, and yes you are right you can make a good recovery, I was 19st before my op (shark bite too) and 60 years old three years on my weight is 13 stone and I run every other day, plus have completed 1/2 marathons for cancer research for oesophageal Cancer
We are lucky (I know) but there are more of us than people think, but tend not to shout because we know the other side, but positive news is always welcome.
G'day Spanner, I thought I was diagnosed early at age 32, 27 beats me, I had the same op, that was 15 years ago. I could not agree with you more, the darkness does lift and yes my life has completely changed both physically and mentally. Life is definitely worth living, as I now have two sons aged 10 & 7 and I keep active both in the community and with their sports activities/clubs.
While I may not totally agree with your flagrant waste of heartbeats by competing in numerous tri, bi and other "athlons", I'm glad you are going about the business of living life to the full Good on you.
I'd like to echo Spanner's comments and say for anyone else that thinks the battle is all too hard and the road is too steep, take each day as it comes, do a little more each day and don't dare let this insidious disease get the better of you. Time flies and before you know it you will be doing triathlons too. (might need your head read, I think the term "fun run" is an oxymoron. Just kidding)
It can take a bit of getting used to, the pins and needles fade, the dumping becomes less frequent, the medication and sleeping elevated at the chest is a constant however, making the most of your precious life should be a priority. Push yourself, but not too hard and fast at the start, and enjoy your rehab and recovery, and make the most of every day you wake up.
Ha ha there's that phrase life is not measured in the number of breaths you take but the number of times it takes your breath away - in that case with all my training I can safely say my breath leaves me approximately twice a day!
Well done. You are inspiring and will give hope to those in a dark place at present? I'm 16 months post op and in the past month o so I've notice a big difference to my physical well being. I'll never achieve what you have but I never did prior to my illness. However my walks are getting longer and will soon be back to what I used to do regularly. I think physical activity is so important to recovery both physically and psychologically.
Good luck for your future events and fundraising for such good causes.
Yeah it takes its time - recovery creeps rather than sprints but you get there in the end, I still remember (and won't ever let myself forget it) the day I'd finally got enough energy to crawl to the local coffee shop and enjoy a half cup of coffee! I even text my mum to tell her! I appreciate all the little things like that now and never ever take for granted what I'm able to do now - keep going and it will get better and better!
How good to hear these positive stories. I had my shark bite ( roof top I think they called it at GSTT!) op a year ago started chemo 18 months ago and did a 5000m row on a machine last week 1 minute slower than my last pre diagnosis session. Last Feb ( 7 months post op) I did a 150 mile bike ride over 2 1\2 days. I am 56 and am really pleased with the success of the operation and skill of the surgical team.
It's not easy and I have periodic stomach pain and discomfort on eating and like Phil find swimming crawl nerve making as lying flat isn't clever. I induce vomiting periodically when my eyes outweigh my tiny stomach and have learnt to manage that better but as the messages above say live every day and enjoy. My oncologist is keen for exercise of any kind cancer does not I understand like exercise for various reasons so I would encourage anyone who can increase their exercise however slightly to do so. exercise referral scheme in my GP practice can get an NHS referral to free personal training sessions at a local gym. This may be worth looking at if you as I did appreciate help in getting motivated again post op.
Jeez you sound as crazy if not crazier than me! Lol! Glad to hear you're doing well too (I'm glad to hear about anyone doing well after this horrid thing really!)
How encouraging it is to hear such positive attitudes. I had the shark bite almost 10 years ago when aged 70. I well remember the early days after the op , a freezing cold January, setting myself the objective of walking a further 50 yards each day but it paid off. I returned to "gentle" golf in 6 months and tennis in 9 months. Now, a few months short of 80 I have played golf for the last 3 days and plan to play for the next 2. I guess there is a bit of luck in it somewhere but a combination of learning to manage your condition better with experience and living as actively as you can brings its reward. Best wishes to all who are doing their best.
It's great to hear all these positive stories! The forum is a brilliant resource for all the struggles we go through but often we only hear about the struggles or the bad news so it's nice to hear the good stories too!
I agree with sportsman, like him I am at the other end of the age spectrum, but a possitive attitude is the only way to go. At home I say I am six years old as the op gave me a new life I would not have had, so its ok to behave like a kid. Would love to know more about your diet as will power is one thing but you do need fuel to what you do.
Yeah I'm the same, I turned 30 a month ago which was an amazing achievement for me considering my initial diagnosis but I was also '3' as I now count the birthdays I shouldn't have had!
Ha ha - the diet thing is going to take some working out, I suffer from regular hypos since the op so struggle with 'energy' gels and tablets that most endurance athletes take and whenever I eat I find it hard to run due to my stomach being in my chest and I can't get my breath. It's going to be interesting that's for sure!
Spanner-amazing, you are an inspiration, along with all the other posters to this message.
It's true, we get fewer positive posts than negative, so let's all keep up the positive.
My exercise has been flagging lately due to work demands, but you've all inspired me to get out for that walk and back in the gym and forego the sofa!!
Well done! We're all allowed rest days for sure but if you're craving a bit of movement get out there and do it! I'm very well aware of the days when I couldn't do anything so never take the ones I can for granted now!
Do it! I personally love the triathlon - I have a bit of a problem with shopping so buying gadgets and gear for three sports is a dream for me plus I tend to get bored quite easily but in a triathlon I find that just as I'm getting bored of the swim it's time to get on the bike and the same for when my legs are hurting from the bike you get to get off and run. Let me know how you get on if you do one!
Thankyou for this post. My partner is 1 month post op and struggling to see the light at the end of the tunnel. We will continue to keep going forward with it.
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