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Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Hello everyone.

My goodness you are an active little bunch. I dropped off the forum for 8 weeks and have returned to what I can only describe as some funny, knowledgeable, inspiring and intellectual conversations about life with cancer. It's going to take me a week to get through them all :)

So I decided I may as well get cracking on the old bucket list and went on a lovely trip to Bali and Lombok with my teenage daughter. Who knew mum and teen could travel in harmony alone together for so long :) And what a wonderful way to forget the clinical environment i have become accustom to and just enjoy the beauty of foreign lands and cross culture human interactions. We had a most special adventure together and there were only a few times that I thought about the challenges of the past few months... it was surreal that just 10 weeks after open surgery i was white water rafting and trekking in tropical jungles! Though our trip came to a somber end with the commencement of a clinical trial on the day we returned home, I will be forever grateful for such a special experience.

Life has been somewhat of a blur since diagnosis in May this year... but boy am I happy to be alive and to be able to share my journey with people like yourselves who inspire me. Thank you x

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Watch out, Mel, you'll have iceman chastising you - white water rafting in Bali 10 weeks out from major abdominal surgery! Still, it testifies to how valuable a good level of fitness is in one's recovery.

I bet it was absolutely wonderful and infinitely reassuring for your Daughter. I think maybe I was abroad and incommunicado when you eventually made your debut here so I missed the detail of your pathology and treatment. I've noticed your tendency to compose ultra brief messages (much like me!) but if you could give a very succinct resume I'd be grateful.

On the topic of lifestyle and physical activity, there is an interesting article referred to by the splendid Mimi Olsson of the Rare Cancers arena, which she summarises in these terms:

Lifestyle Factors in Cancer Survivorship

Lifestyle factors have been linked to the risk of developing many common
malignancies and, increasingly, to prognosis. Observational evidence has
shown a relationship between so-called energy balance factors (ie, diet,
physical activity, and body weight) and risk of cancer recurrence and
mortality in cancers of the breast, prostate, colon and, perhaps, other
cancers. Interventional work has shown that individuals who make favorable
changes in these lifestyle factors after cancer diagnosis feel better,
experience less fatigue, and may possibly even decrease risk of cancer
recurrence. Other lifestyle behaviors, such as smoking and alcohol
consumption, have also been linked to the development of common cancers and
may have important health consequences for cancer survivors. This article
reviews the evidence that links lifestyle factors to cancer outcomes,
provides clinical recommendations for cancer survivors, and describes future
directions for lifestyle research in cancer survivors.

Incidentally, if you're planning another trip to Bali, maybe you could take me along :)

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Boy, you sure got the recipe right! What is your next adventure?

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hanno,

I am aware from your other posts that you are battling side effects from the trial, but that your resolve to continue remains strong, great attitude! You are going to war for all the right reasons and I salute your efforts! Concentrate on those reasons and think about all the trips you and your daughter will take in the future. Stay strong, hang in there, it will all be worth it in the end.

Good luck and Godspeed,

Gary

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

TW, I think my partner would have something to say about me meeting an online comrade on in a tropical paradise! Thanks for your message. I have always viewed myself in a pretty damn good situation to tackle this thing in terms of health. Sure I smoked in younger years and there were plenty of youthful alcohol binges. But I have always excercised and eaten well and in recent years I have been at my fittest ever. In terms of diet, this has also recently stepped up another notch with a coeliac disease diagnosis. No more gluten for me. While I have lost A LOT of muscle tone over recent months, I am proud to say I took my first 5km run the other day and if it weren't for the damn hand-foot syndrome presently dogging me, I would be doing it again right now! I can't wait to see what science has around the corner in terms of diet as medicine. I firmly believe that my body will support me if I support it :)

Next Mr Fox I think will be Nepal. Or India. But first, I will do the worlds largest commercial abseil. Just waiting for a little more healing to happen though before I strap those ropes around my waist! Now if I could just win lotto and make a dream come true for everyone... you know I haven't ever bought a lotto ticket. Perhaps the time is nigh.

Gary you're a legend. Today I was feeling emotional and crappy. I am avoiding socialising because I don't feel strong enough to face the "how are things going?" questions. The other day I broke down in the clinic. My doctor is so kind. She took my hands and told me I don't have to do this. But that's just it. I feel like I do. For my family, for myself and for those out there like us who will be diagnosed in the future. Your message snapped me straight back into gear. THANK YOU. I am doing the right thing and things will get better :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mel, I'm so disappointed about that Bali trip :(

I imagine abseiling would be less enjoyable than it might be with hand-foot syndrome! It does seem to be a major problem in many RCC treatments. One of the bunch of brilliant and highly-informed people on KIDNEY-ONC has just drawn attention to a useful item on treatment for it. The context is one of advice for oldies like me but I'm sure the recommendations wuld be equally valid for young things like you. You may care to look at it in case it contains a useful new idea or two. It's to be found at :

http://www.caring.com/articles/treating-hand-foot-syndrome

It's good to hear you have such a sensitive doctor and you have the best of both worlds when you also have my great friends Fox and Gary to hold your hands too.

Undoubtedly you are doing the right thing, your philosophical approach is impeccable and things will get better.

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Thanks for the link. All good advice I think - I hadn't heard of the vitamin B6 as being helpful? So far what seems to work for me is NOT running or doing barre class (on toes most of time). Have dropped the stilettos and donned what my nurse calls granny shoes and I use gel inserts in all my shoes. I also use a pumice stone regularly and a nice oatmeal cream called Dermaveen. Avoiding the dishes is definitely a must too. Such a shame :) The floor heating at home can also be a pain because it keeps my feet hot when I really need to cool them down! But this second round of HFS has been much less severe than the first, I think due to the measures taken this time at the first signs rather than just pushing through.

And yes, I am a lucky person indeed to have a sensitive Oncologist, as well as my wonderful family and my new found friends here.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Notorious is more likely...Seriously though, the roller coaster ride of emotions is all part of the healing process. When you are finished all you will remember is the good stuff, all the bad quickly fades away. You are much stronger than you think!!

Eye on the prize,

Gary

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Thanks Gary. I look forward to that time where the negatives take up less time and space in my life. For now, however, I am content to say that I am 1/36 of the way through treatment :)

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