ChristineI

I had my feeding tube fitting the day before I started my Radiation ... its a line going straight into the stomach (expalined in my blog)

Although this sound scary it was a life saver

As you have not had this done, chances are it will not happen as the have to pass a camera down your throat and into the stomcah to see what they are doing ... your throat will now bee to sore and quite swollen, So I am guessing this will not be possible

You will therefore have two options

1. Try and keep up your food intake to keep the weight on and health up, but as its already becoming difficult to swallow I guess this does not look like a good option ... I know several people who have done this though, so it can be done

2. your other option to to have a nasal tube fitted, this is a direct feeding tub down to the stomach, to which you inject the fortisips 

If I can be honest, the PEG in my opinion is the better option as although the nasal tube is small the later you have this fitted the more the process of fitting it becoame more uncomfortable ... its also somthing down your throat that you might not need atthis point in time

My PEG was insterted on July 8th and I went 100% full time feeding on it at around early August and it did not come out until mid December .... So if you have a nasl tube its going to be around for sometime

apologies if I have scared you a bot, but i feel its imports to be honest with you BUT I can only talk from the PEG in my experiance and the nasal tube, only from what a fellow patient who went through treatment with me in the same hospital ... but we are all different 

The radiotherapy and being bolted down to the table can be intimidating, you will start to lose weight so what started off as being very tight on day one, will soon give you a little wiggle room. I had tomotherapy and used to count the revolutions .... 38 on the top and 38 on the bottom I think (I will have to read my blog again to correct that stat)

My blog is a good read on those long Chemo days if nothing else and I now have many people from all over the world commenting on it (Big in Brazil for some reason at the moment!!!)

Try and discuss your feeding issues both short and long term with your medical team and if you think you are going to need a nasal tube, get it fitted now (dignity and survival are unfortunatley two words that sit at the opposit ends of the spectrum, at this stage of treatment)

Hang in there, the raditaion will start to kick in the tireness from now on in and hopefully you have a good support network of family and friens around you to lean on .... lean heavily, rest, feed, moisturise after every radiotherapy, try that warm chinese green tea (its digusting but you should have lost your taste by now) ... this is not the time to play superwoman ... unless you have to of course

Shout anytime you want, asked whatever, nothing is too meanial or silly

Nearly half way there

Vatch

Hi Christine im sorry to hear that you are having such a rough time with the side effects of the various treatments you are having.but fingers crossed that its all going to worthwhile. have you been given any idea how long the treatment will last for. All the best for the rest of your treatments..

Best wishes james

Hi James,

Yes, it's been really tough, especially the chemo which made me quite ill for over a week.  I'm just about half way through my treatment now which finishes on 2nd May.  I am to have the second dose of chemo on 16th April and am having radiotherapy 5 days a week.  

I was wondering how you were doing.  Have you any more news yet on your treatment, et.?

Best Wishes Christine

Hi christine

I've had no word yet.waiting for the ct scan results of the nodules in my lungs(fingers crossed).and im also still waiting for an appointment for the halo procedure on my oesophagus.

Best wishes james

Good luck James and keep in touch.

Best wishes Christine

Hi Vatch,  I had my last dose of chemo last Monday, which the doctor decided to reduce as I had been so sick last time, and this time was not quite as sick but I still have no appetite  although I know I have to try to get something down and at least drink.  I keep hoping that this will pass.   Tomorrow, it's the start of my sixth week of radiotherapy and over the weekend I have lost my voice completely and my throat is quite uncomfortable.  Did this happen to you?  I can only manage a whisper now.  They did tell me the last two weeks everything would get worse.  I feel like giving in but know that I have to do it.  Only 8 more radiorherapy treatments to go but I'm worried about my loss of voice.  Any advice?

Best Wishes

Christine

Hi Christine,

I just thought I'd jump in and say hello.

I've never had radiotherapy (it wasn't an option) so I can't comment on that part or the loss of your voice. Chemo and loss of appetite I can relate to though.

I survived the worst of chemo on a combination of home-made power-shakes, liquidised home-made soup, chocolate and cake. My wife did a good impression of Nurse Ratchet from One Flew Over the Cuckoo's Nest in makng me drink the shakes and soup (I'm dead if she reads this!) but the chocolate and cake seemed to disappear without effort.

I hope your next 8 treatments go OK!

Best wishes

Dave

Hi Christine,

Only you can get over that particular hurdle. Eating was a major effort for me too, a massive hurdle especially when D&V was a factor. 

I worked on the theory that if I managed to digest only a third of what I'd eaten, it was better than nothing. I was on a three weekly EOX cycle, the first few days after infusions were the worst but after about a 24 to 36 hour sleep I forced myself to eat and exercise. 

It was worth it in the end though ... I'm still here writing this message. Hang on there :-)

Best wishes

Dave

Christine

it happens, mine went for about 6 weeks, then I got a sort of whisper back which then graduated to a Dalek noise ... it comes back but my X factor days are long behind me now

i have enclosed my blog post on how I got through it, but it’s one you are going to have to go with the flow on ... it will come back

gammaraygary.wordpress.com/.../

last week and you’ve done brilliantly .... that road to recovery is nearly beginning

lets us know how you get on

vatch