Back from my trip to SE Asia (brief update)

[socrates_8]

Hey my fellow MPNers...

Some of you might recall that I had decided to try my hand at scuba and do my Open Water Diver's certification when abroad in SE Asia...

Well... all did not quite go to plan.

Most of the journey over the 3-4 weeks, I was severely fatigued and extremely nauseous. Just prior to leaving, I also decided to try to reduce my Jakafi b/d dosage from 25mg to 20 mg. Unfortunately, that might have had some impact on my immediate and lingering symptoms & side-effects (?).However, I am now on 20mg bd and my platelets are still way too high (855), while my Hg & Ht are dropping & I have become quite anemic as a result.

We travelled to Thailand stayed a few days visiting the Russian markets & acquiring gifts for family & friends back home before flying to Siem Reap, in Cambodia.

Never been to Thailand (Bangkok) before, & have to say that I do not much care for the press that is the human condition in Bangkok. The pollution & acrid smell of a mixture of cigarette smoke & fossil-fuels almost required that I continually wear a surgical mask just so I would not feel even more ill than I already did... There was also much sadness in the way in which many people must eek out their existence. So many sights that shall remain indelibly etched into my memory...

Siem Reap, a resort town in northwestern Cambodia, & the gateway to the ruins of Angkor, the seat of the Khmer kingdom from the 9th–15th centuries. Angkor’s vast complex of intricate & ornate stone buildings includes the preserved Angkor Wat, (the main temple that sits inside a vast mote system that provided that water for a then thriving civilisation) , which is pictured on Cambodia’s flag. Giant, mysterious faces are carved into the Bayon Temple at Angkor Thom (Tomb Raider made famous). It was an incredible & ephemeral journey into a portal from another imagined cultural fascination - Astounding. This was where Angelina Jolie filmed her 'Lara Croft - Tomb Raider' flick etc.

I really loved Cambodia, however, sadly, from my own perspective, some of the more idyllic locations have been snapped up by huge Chinese investors wanting to build casinos...

There is what once was a beautifully scenic coastal town called Sihanoukvlle, that is the location of some magical coastline known as Otres Beach. This was where I had decided to attempt my scuba diving course. However, my good friend had other plans that I was not aware of at the outset...

My very good friend who took me on this journey, failed to mention a small detail about a certain penchant of his, & I was ultimately to learn that he has an interesting & extreme fascination for gambling. In Thailand, there is no gambling allowed but not so in Cambodia, much is the pity...

Sihanoukvlle, has been transformed into a mini Macau or Vegas, & my friend wanted me to accompany him to these smoke-filled dens to witness his not-so-fortunate prowess at the roulette & black-jack tables...

Hence, during my stay there, even though I did locate the best dive instructors & ($price all in US$), I eventually found myself far too ill to undertake the dive course. I suffered from some internal bleeding & a great deal of being bilious over the next few days.

My specialist now wants me to visit a 'Gastroenterologist' with the specific enterprise being a 'Colonoscopy' something I may well decline once the appointment time arrives. To be honest, if I do have any other issues, part of me really does not want to know, I hate feeling sick all the time...

My apologies if I am sounding a tad precious...

In any event, the diving trip was a non-event, however, I do have many new fresh memoirs of a fascinating and all too short adventure...

Best wishes to all...

Steve

xo

(Sydney)

PS. In my absence, my friend won $15k at the local club starting from the night we arrived back in Oz & over the next two days... go figure...

[Merry6]

Hi Steve, sorry to hear your health is not all it couldn't be and you didn't get what you were after out of your trip. My brother and his wife visited Angkor last year and then did a cooking course in Cambodia which I thought was an interesting choice.

I know well what you mean about further investigations and not wanting to know...... (I did write a whole lotta stuff here but then deleted as I don't want to hijack your thread....) It is such a pain having things wrong with you - I've found myself withdrawing from speaking to friends and family as I'm sick of listening to what is wrong with me!

Anyway keep on keeping on and let us know how you get on. Hope all goes well so we get to hear about your next adventure soon.

And ps. you are precious ....

[socrates_8 in reply to Merry6]

Hey Merry...

Thanks for your response... Please also feel free to 'hijack away'...

Interesting too, I also thought about doing a cooking course when in Cambodia, as I have always adored spicy gastronomical delights... & cooking courses over there seem to be highly prevalent.

I went along to a funeral for a friend (sounds like a song), yesterday. He was just two years younger than myself and he perished in approximately 16-18 weeks, after diagnosis and a failed operation (cancer of bile duct). Tony was of Koori (NSW aboriginal descent), & although I do not normally attend funerals, this one was kind of a cultural experience in & of itself. A blend of traditional and assimilated European cultures all bundled into one.

I am a lover of our 'human condition' or our behavioural & social nuances. So in many ways, I viewed the event as a voyeur. I am not religious at all, & while I do not like to apply cliched labelling, I am somewhere between an atheist/agnostic.

Nature & science are far more to my preferential way of viewing perspectives on life etc...

Anyways, lovely to hear from you Merry...

Stay happy & as well as possible.

Steve

xo

[Merry6 in reply to socrates_8]

Ah yes, science and nature - I'm with you there and not being religious doesn't mean we can't appreciate spirituality or have our own personal version/view of life, the universe and everything

I must say I'm having a bit of trouble keeping my usual over half-full view of life on a day-to-day basis with this horrendous Hydroxy. Feeling pretty flat and miserable since I started taking it which is not like me at all. However, at least I'm aware of it and can keep my "brave" face on most of the time.

Keep the stories coming, gets pretty lonely over here so I'm always appreciative of a decent raconteur ;).

All the best, Merry

[socrates_8 in reply to Merry6]

Hey again Merry...

I don't know how anyone perseveres w/ HU. I didn't last long when I first tried it. The mental fogginess was totally unbearable for me personally.

What exactly is your MPN Merry? I am just wondering what other options might be available to you & your condition. Some people seem to tolerate HU but I could not! You might also be the same in that (?). In any event, if you are depressed & unhappy (as I was), please seek out other avenues for your treatment regime. My world changed quite dramatically once I commenced Jakafi.

However, it also may not be for everyone, nevertheless Merry, please always feel that you can talk to me & tell me anything...

Merry, it is lovely to know that you are there too...

Steve

xo

[piggie50]

Sorry you didn't get to do your scuba Steve, but what a great story. It just shows we shouldn't let our MPN stopping us trying anything.

I hope you are soon feeling better.

Best wishes

Judy x

[socrates_8 in reply to piggie50]

Hy Judy...

Yes, the story is the the fascination, as is our journey. I am always grateful that I possess a philosophical perspective, otherwise my depression might always be a winner, & naturally I would not like that outcome.

I feel beter already Judy. Cheers for your response...

Steve

xo

[socrates_8 in reply to piggie50]

PS.

I have not given up on the scuba as yet either... :))

[Jellybean129]

Hi Steve

I’m only just stating on my MPN journey (ET - get test results for Jak2 etc tomorrow) and was very moved by your post. Cambodia sounds a beautiful place and I’m so sorry you didn’t manage to do all you wished to do. What I would like to say is you are an inspiration to me - despite your health problems you embarked on an amazing journey and must have seen some wonderful things which will live as good memories for a long time. I have learnt through the years to ‘cherry pick’ my memories and remember the things that make me feel good. The sad things are there but stay routed in a past that has now gone. You must have a feast of the good from your holiday which hopefully will outweigh the not so good.

I too am not religious but do believe in the beauty of what we have around us. I’m well known for going out on my horse, being away for ages and coming back full of a little flower I saw or a stone that caught my eye (with tons of pictures to boot!). It’s the little things....

All the best to you and I hope all goes well with any tests etc. I know how you feel about further investigations - it seems just when we think we have been put in our diagnosis ‘box’ something else pops up to put a stick in the spokes.

Gill x

[socrates_8 in reply to Jellybean129]

Hey Gill...

Thank you so much for your thoughts and advice - 'Cherry- picking' is indeed a great way to sift through the wake of our lives that is not always all so savoury, shall we say...

I also love horses although it has been some time since I last shared a moment with one...

Good luck w/ your diagnosis tomorrow. I was JAK2 negative and later learned that I was CAL-R+ (type 2). I simply try to remain philosophical these days and accept the good, bad & the ugly. Life is a parcel of all conditions is it not...(?)

And yes, there were and will always be many wonderful (and not so) memories of that trip. However, all of them are of equal value in their own ways...

I also love collect seeds & rocks from wherever I venture...

...hopefully... I shall still go diving into the not-to-distant future if that becomes a reality I shall be very happy indeed...

Thanks Gill

Steve xo

[beetle]

I am sorry your trip did not go to plan and that you felt so poorly. I wonder, did you check with your consultant about scuba diving? Forgive me if I'm speaking out of turn but I would have thought that diving and high platelets do not make a good combination!

My boys have all enjoyed Cambodia but I confess I've never been. Advancing age and fatigue have left me content to be an armchair traveler and I really enjoy those sorts of programmes on TV. I have nephew who runs a travel agent specialising in that area of the world as he loves it so much. That still does not tempt me to go!

I hope your symptoms are all sorted before too long. Very best wishes, Jan

[socrates_8 in reply to beetle]

Hey Jan...

Thanks for your post. Yes, scuba is not really something anyone should do who are suffer from our conditions...

... However, my intention was only to do so if I could do so safely and w/out causing any grief to anyone including myself...

Yes, while I do admit that it was not much fun travelling and almost always feeling ill... I am still happier that I went at the end of of it all. That day will arrive soon enough when I can no longer get about in the way that I can today, and i am in no hurry to find that space either...

Best wishes Jan & thanks for you message.

Steve xo

[beetle in reply to socrates_8]

Absolutely! Make hay etc! I took a scuba diving course in my early twenties (a long time ago!) and clearly remember our second lecture was a Heinz 57 varieties on how to kill yourself diving! I did gain my certificate but had to give diving up through cramps every time I wore flippers. The equipment has all changed since then. I can understand the draw to do it but I can see you already appreciate the risks.

Keep up the adventurous spirit and come back and write all about it again. It makes a lovely change!

Best wishes, Jan

[linds]

Gosh Steve, you should be a travel writer! I did enjoy what you wrote but not how you felt. I am so sorry it was not what you were hoping for in the diving field - some years ago I went scuba diving in the Red Sea and it was the most amazing experience. Not had the courage to try scuba diving, do you think you might try again?

Steve, if you are asked to have a colonoscopy I do hope you agree. It's horrid to feel poorly all the time and you have too much of a zest for life to ruin good days.

I do wish you well and thank you again for the imaginary trip.

Linda

[linds]

PS I meant I went snorkeling in the Red Sea, not skuba!!!!

[socrates_8 in reply to linds]

Hey Linda...

Thanks for your your message. I have only ever read about the treasures of the Red Sea. I have dived and snorkelled on the Great Barrier Reef here and also in Vanuatu's Hideaway Bay.

I have not as yet resiled from the attempt to further my scuba adventures... watch this space Linda...

Steve xo

[Swede]

Hi there....

I am on Hydrea but I am not a diver. My husband is ...he has all the qualification one can get in UK but he never dived in Viet Nam when we went. He dived in Australia...I am with him every time, even when he holds courses,so I feel I am a non diving diver and I am a qualified diver coxn. I like being ON the surface, not under...

Anyway, I (we) love to travel and as He needs to water his gills...there is a lot of diving places in the world we have visited. I am very happy when I am in a warm climate. I cannot stand cold. Newfoundland was just on the border of being too cold in May...Our house must be the warmest in UK. I have been taking Hydrea for 8 years and a bit, now.In the beginning I was ok, although I was also working in a stressful environment. Now, just when I became ill, I had a portal vein thrombosis and because of that esophagal varices (that bled once)and pancreatitis. I have to do a gastroscopy every third year...No big deal at all. When I was ill people came to visit me and cheered me up by telling that they knew someone that died from it...

I have tried to read up on things that are ET related, but sometimes it just brings me down. I become too sad and I think just on the border to depression, so I have to just leave it.

We sold the practice so I have not been working for a year but interestingly, I cannot say I feel any better. Last winter I spent most of it, in Spain. My body likes that!

I got the little leaflet that comes with the medications, and highlighted all side effects I have. It is pritty pink (the highlighter pen has ppink ink...)!!!!

Sorry, I am going on here...but I just had the speed up! :-))

[socrates_8 in reply to Swede]

Hey Swede...

Thanks for stopping by and saying hi...

Sounds like you have been fortunate enough to have travelled quite a bit. I too prefer the much warmer climbs and I do seem to acclimatise well enough. The cold weather and I have a mutual dislike of each other...

I am sure that I have also suffered from (Portal vein thrombosis), as you have mentioned:

"I had a portal vein thrombosis and because of that esophagal varices (that bled once) and pancreatitis".

Many has been the occasion in the past when I woke w/ blood in my mouth or emanating from the back of my throat. I have also had that really nasty tarry stools from time to time (sorry for the mental imagery).

However, all of these symptoms seem to come and go, and unless there is something taking place at the time of the proposed investigation, I would simply prefer not to participate in this invasive examination. At this early juncture, I believe it is still my body and my right to say yes/no to all such things...

Besides, I am already working on my next adventure and this time I will make sure that I am well enough to undertake the adventure.

My friend who accompanied me on my last journey, (as much as he is a generous soul), understands very little about when & why I need to rest when I need to rest etc...

Next time I shall be much more prepared...

I really understand what you mean about learning about our MPN condition. Mine started as ET and is now MF. I have learned a great deal about everything MPN over this less than 2 year journey thus far...

Depression is also a condition I try to remind myself of and exterminate at every turn, however, sometimes that is not so easy to achieve, and sometimes I really do just want to give up, as I question my purpose for being here...

However, I fully intend to achieve my Dive Certification before I leave...

Thank you for your words...

Steve xo

[mhos61]

Hi Steve,

lovely to see you back on the forum. So sorry to hear that you didn’t get to do your dive, must have been extremely disappointing for you. There’s always another time. Apart from that, it sounds like the trip was cathartic for you.

On another note, I really would encourage you to heed the Specialist’s advise in regards to seeing a Gastroenterologist. You say that you ‘hate feeling sick all the time.’ It just might well be that this is something a gastroenterologist can easily rectify.

Mary x

[socrates_8]

Hey Mary...

Thanks for your message, & sorry for my delay in responding.

It is not that I do not want to be well, that creates my reluctance of course. Examinations of this type can be rather invasive and a tad personally embarrassing, & even more so if it was conducted at a time less likely to produce a worthy result.

My problems associated w/ portal vein thrombosis seems to be somehow cyclical, & in my view, (meaning that it comes & goes. However, better findings might be produced if it was undertaken when the problem is self-evident rather than when it is not, that is my main concern here.

To see the designated specialist requires my being in a queue, & being examined when the problem is more evident has little or nothing to do w/ such queues if you understand my convoluted meaning... (?)

At the present, I continue to lose weight & my Hg & Ht continue to fall rapidly. However, in my mind this is my likely due to the effects of Jakafi than it is to Portal Vein Thrombosis. Hey, but I really do not know anything here as I am learning on the job - so to speak...

I guess I will just have to see where it is all at when the appointment is finally known etc...

Cheers Mary

Stay happy & well...

Steve xo

[Hidden]

Hi Steve, sorry to hear about your health and the trip wasn't all that you hoped for. I will say having done my PADI Open Water before being diagnosed with PV, I experienced many migraines and issues doing so and my first consultant told me after diagnosis some 4 years later that I should not dive again or risk losing my sight. Something Claire Harrison has disagreed with since then I hasten to add, however, I have not had the opportunity to dive since that time in 2005 in Thailand. Koh Tao to be exact, one of the best places to learn I would say. What also struck me is that I have visited Bangkok many times in transit for a day or two or for longer on various trips, as I also travelled for 3 months back in 2010/2011 and I also visited the places you mention in Cambodia. Sadly there is a lot of sex tourism in these places too, par for the course unfortunately. I am sure things have got worse since I visited too. It's a shame what you saw of these places seem to be the more "smokey" parts. As much as Bangkok is a crazy city with too much traffic, I got used to it and found some lovely places to stay with roof top swimming pools and the like. I hope one day you manage to do your Open Water, perhaps with a friend who also shares the same values and the same goals as you, I know I will never forget my gratitude to find a guy who I worked with also wanted to do his Open Water, in fact he went on to do his Advanced, whilst I ate something dodgy and was ill for a good few days. Warm wishes, Louise

[socrates_8]

Hey Louise,

My buddy tells me that things have become much worse over time, sex industry continues to flourish too, unfortunately for some...

There were a few coold places in Bangkok. For instance, I really enjoyed buying clothes from the Russian markets, & the Double Tree Hilton on Soy 46,, Sukumvit, was an excellent place to spend our final few days while the Kings long awaited cremation got underway etc, (great pool bar too).

I can also highly recommend the OK Boutique Hotel in Phnom Penh. And it also has an excellent rooftop pool & bar overlooking the mighty Mekong and the Palace grounds etc.

It wasn't all bad, I was more disappointed that I was not able to try the diving, & especially so after having negotiated some great rates to stay onboard for 4 days & 3 nights, w/ all food & beverages inclusive. However, that's life...

Hopefully I shall try again into the future...

Thanks for your message Loise.

Best wishes

Steve xo