Hi Ananth
I think it's good to have everyone's experiences posted and the day that someone else's opinion hurts my feelings will be a very good day I think ~ it will mean I've got nothing better to worry about.
Honestly, like Michelle and Steve, Trevor HATES the tube feeding ~ it has really messed with his head and in fact I think he may have an infection in his stomach, just waiting for the dr to call as I write. However all that being said, I can't imagine what would have happened to him if he hadn't had the PEG because he's faded before my eyes as it is and the best he has been able to get down (up til now) is about 30mls of water with his heart tablet and that's been painful to watch. In the same position, I personally would be opting for the early fitting of the PEG.
Can't wait to hear from you Ananth. After Australia's victory over India the other day, I must admit, I am finding the cricket a little more interesting (tee hee!)
I'm really sad that you've got the miseries but as hard as it is to do, I know you can roll with it and we'll soon see you riding the crest of the wave again.
Dear Everyone
I left a post on the community album thingy on the 16th Sept and have been feeling very neglected since I've had no response. I had another look in just now and found the great pics of Ananth and also Ananth and his (very handsome)son. Come on all ~ keep those pics flowing, it's great to see your snaps on line. I know a lot of you will be able to catch up with each other at the walk next week, but for those of us way down here, we need to have the pics!
Keep smiling, All.
Lots of love from uptown Willaston
Deborah

Dear Deborah,
That was a nice post - except about the Aussies hammering away at the Indians right into the ground. Actually, I do not think anyone is quite gets into a party mood if a peg has to be inserted or has it already inserted. The question is - suppose the peg is not required post radiation and chemo - then what happens? As someone said - it will be another belly button. I understand your immunity levels would be low and keeping in mind Trev's situation you are totally right. What may be right for Trev may not be right for Ananth and vice a versa...

In my case I messed up with playing the everygreen macho - smoking away till the problems landed came on ( anyway... dont have anything on the smoking bit as I always did enjoy my smoke! and I really shocked the old ladies ate Indian Cancer Society when we were invited on a debate on smoking. The host asked me if I got cured totally - would I revert to smoking? and to everyones surprise and especially to the dear old ladies, who used to look upon me as an ideal front - I said of course I would. You ought to have seen the stunned silence. Asking for an explaination, I told them that pre cancer I always enjoyed a good smoke as it would help me reduce my stress levels and I truly enjoyed the smoke. I never smoked because of anyone forcing me or to show off. I added if smoking was the cause of my cancer then half the Indians should be dead by now - and finally said that if I had not got the cancer I would not be sitting there answering stupid questions on smoking just to make some society happy!! ).Would you believe if I told you one of the main reasons for my cancer coming around was voice abuse? I had never ever heard of this until my oncologist began with her question/ answer diagnosis.

Did you like the snaps - they are not too clear as I do not which one of my kin - wife or my elder son clicked these on their phone. I think I will post some of the most recent ones ( I just love my ponytail!!!).

I am almost out my bouts with panic and despair and am also almost back to being the crazy old self. A few things that I have cut down upon is driving and leave that to my wife and elder son. I do ride the bike but not like a mad hatter any more- which makes my younger son very happy as he gets to ride the same more often (the one in the snap).

Trev - You take care and just be your normal self - nasty or nice ( everyone accepts that!! ). You got a lovely wife who truly cares and thats a support that not many in this world have.

So on that note with lots of love to both of you and with a special hug,
Ananth

Hi Guys,

Thanks for the response of the PEG. Well, I was originally thinking that he is a normally healthy man but I guess with this kind of situation (specially now that he has such a headache that I can see he has been lossing weight by struggling for the food), PEG to insert before the treatment might not be a bad idea.

So if the PEG is fitted, can you still take shower? or how do you guys maintain it so to avoid infection?

Hi Help,
Mantaining the peg is not much odf a problem. As you would have guessed i have been one on for seven years and no problems as regards to infections. Having a bath or a shower is not a problem at all - you dont have to cover it or anything of that sort. Just have the normal shower as you always had but ensure after you finish clean the area of the peg insertion with Betadine. Then take some Betadine cream and rub the point where its been inserted to keep the infections at bay.
One thing you got to be careful of is the eroding of the peg tube ( but thats not going to happen in a hurry) and once that does happen - the peg may just pop out and give you a scare of your life. My advise - get a spare peg tube and keep it at home. The last time it happened to me - I did not have one in spare and was in a very important meeting. I suddenly felt my T shirt ( under my jacket) all wet and when I put my hand in to check it out I had blood all over. I called up my wife and arranged for another tube and then called my doctor who could only meet me after about three/four hours since it happened. As there was nothing much I could do - I just carried on with the meeting with a towel pressed against the hole where the tube popped out from. I then drove back home and to the doctor and I had a new one in a few minutes.
As far as bathing is concerned - just bathe the way you always have been.
Love,
Ananth

Maintaining the PEG isn't too much hassel. Regular flushes keep it patent. I was advised not to shower with mine but i took nbaths and just made sure i didn't dunk it in the water. I was too weak to stand and shower anyway! I also had a PIC line for chemo so io was covered in tentacles! (TENTACLES Ananth ).

Deborah i have a big girlie night planned for this weekend and i'll take lots of pics with my new har and everything just for you!
& then next week isa the walk so i'll be sure to take plenty!

Take care guys,
Michelle

Thanks guys. Okay Ananth, that was a pretty scary story from you but I admire that you managed all that for 3-4 hours! My god!

Hi Michelle,

What is the PIC line? LT will have chemo too so is it something that you need to carry on your body?

Love Jian

They come under a few names (port, Groshong catheter, PIC) It's a line that goes into the main artery. Mine was 2 lines that had valves on the end. Some have it on their arm, but mine was near my right armpit. With mine the nurses could take blood and give me my chemo through it without the need for needles each time and without having to put in catheter.
I had my chemo in hospital for 24 hours, then at home for 4 days through a pump that was connected to my line.
Hope that helps.

Oh I see. Thanks Michelle. Not sure what the Dr. will do since LT will be taking the CT on Friday and they will have a plan together next week. I hope the treatment starts sooner but they kept telling me it takes time to prepare...it is just so frustrating to see him suffer from the pain...

Love Jian

Dearest Michelle,
I can understand what you must have gone through with both the peg and the PIC line there together.TENTACLES is a mild world Sweetie and hence i am not going to say anything on that bit. I am also glad that you were not too scared of what the doctors said and had a proper bath etc. ( but without dunking the peg tube? - how did you manage that). I either have a bath or a shower ( twice daily ) and do not wear that stupid bib like thing so that water does not enter the trachea and even as far as my peg is concerned - I bathe as anyone else who does not have this extension and what I found was that there were less chances of it getting infected if I washed the site well and then cleaned with betadine and finally used betadine cream. My doctor also suggested that I put a nice thick piece of gauze at the point where the peg goes into the stomach. It gives two advantages - one is it keeps that area from getting grazed and infected and secondly the cream stays well withen its limits - not messing up my clothes.
Lots and lots to my sweet brave girl!!,
Ananth

Hi Help,
I dont think the story was that scary as one has to keep in mind that being of a certain material - it has a life and once that ends - it has to come out.
More then often one does not realize its popped out as there is no pain etc. Again, however, there is never a cause for alarm as long as you keep one spare tube. The original peg they insert is like a work horse and will go on and on but will have to be removed in due course to make way for the new ones. The new ones, unlike the original, have a baloon which is inserted into the stomach and then filled up with a special liquid that comes with the tube. As long as the baloon is ok - all is okay and its only if it bursts the thing pops out.
In my case, I guess there are more chances of it happening as I work out - lifting weights, streching etc. So there is nothing really to worry about. The main thing is that its a life saver.
LT will be fine - he has been a tough guy and he will be that way. I do not think you have to worry about him on the peg tube front.

Take care and with lots of love to both of you,
Ananth

Thanks Ananth.

You know, LT just took the CT screen last Friday and was told the first Radiation is on the 29th. (?!) I don't understand why we had to wait that long because the last conversation that we had with the R/T doctor was that he planned to put a plan together this coming week and the treatment should be the following week. I could understand that it takes one week to plan but it takes 3 weeks???? That is a little too much...

Does anyone have to wait that long for the treatment to begin? Obviously I have no idea why...

Love Jian

Of course our health system is very different to yours but here is seems quite normal to wait for 4 weeks, or even longer for the first treatment to begin. I was horrified at how long we had to wait, then was consoled that if they thought is was that bad they would have started earlier.

Hello Jian
We had to wait about that time. After the planning meeting they have to fit and make the mask which from memory was done about a week after the planning meeting and then it was a couple of weeks before treatment.
Cheers
Deborah

Hi Jian,
There is nothing I can put past your medical services. I have no idea with all the latest of machines, one has to wait for weeks or even months for the treatment to start. I had the choice of going to Australia or back to Spain for treatment but having decided on India was the best thing I did. Excatly one week after the biopsy (very normal) and the MRIs' being produced to the oncologist, my mask was made right away and my treatment started the very same day.
I have had a couple of minor surgeries in Spain (which were not urgent)and I recall - everything was taken so casually. If anyone ever asked me would I go to any other country for treatment I would refuse!

Love,
Ananth

Thanks guys. Okay now I felt better. In fact, after we left a message for the R/T Dr., he moved us to the 17th, which is 2 weeks ahead. I know that as the family, I am so afraid that the longer the wait, it faster the spread....so thank god that at lease to wait for 1 week isn't that bad...I just hope that the plan is well-established to the full patential.