Last Update (21/05) - Ho Hum, Seconds out - Round 4!

PFJTHS said:

Yes both.  But they are messy to fill.  

And time consuming...takes up all day if that's the only way to feed. Couldn't wait to get the pump set up overnight

Beesuit said:

PS some people, I  have read, got anaesthetic lollipops 

I mentioned that and liquid lidocaine to my radiologist.. a definite no no, as the anaesthetic could numb the throat bits and they end up not doing what they should be doing.. 

Beau Chapeau said:

a definite no no, as the anaesthetic could numb the throat bits and they end up not doing what they should be doing.. 

Yes. That’s the reason I was given. That and the danger of aspiration and biting  your tongue 

The solution, for me, that has given me some breathing space is to now take paracetamol by rote, even though I am not in pain aside from eating, then Oxetacaine to ease just before eating.  They also want me to start morphine but that feels a step too far at the moment.  I'll discuss with the Dr tomorrow how I get on. 

Once I explained the issues they were right on it, but I feel my hospital is not proactive, more reactive in managing issues.  That does not sit well with me as I like to prepare and use as necessary, but I also see their side of the equation if they have patients that can't manage their pathway properly...

PFJTHS said:

That does not sit well with me as I like to prepare and use as necessary, but I also see their side of the equation if they have patients that can't manage their pathway properly...

I found the lack of control was the only thing that defeated me. I had planned rigorously and thought I had it sorted but the human body is fickle and it all came crashing down that New Years Eve despite my plans. No centre can cater for everybody, uniquely. We have to do the best we can. 
There’s nothing wrong with smiling sweetly and  taking the morphine home, surely? 
Analgesia by rote. Thats what we plug ad nauseam 

Best wishes. 

PFJTHS said:

morphine

It’s good to have that anyway in case you need it on a Friday when you’ve just got home from RT. 

I've got lots just in case!  Some left over from previous surgeries...  I could set up a pharmacy 

End of week 3 – update copied from a Facebook post, but happy to add detail is asked.

Last Saturday’s post was generally positive. Maybe I should have held back until Monday to update as Sunday night after eating a “normal” dinner things went downhill rapidly overnight. By the morning my mouth and throat were so painful that I was unable even to sip water. Thankfully I have the PEG feeding tube in and was at least able to inject ½ ltr of water straight into my stomach so I could hydrate and buy some time for the doctors to sort me out that afternoon – which they did.

Some aesthetic mouth wash at least now enables me to get some food and water down. It gives me about a 15 minute window to eat. The tongue swells and ulcers form and go. My throat is raw and bleeds like a very bad cough may make yours do occasionally, but mine is constant. Food taste has now almost all gone. It is a strange sensation and may take many months to come back in some form or the other.

I am slowly losing weight, which is bad! The post Christmas diet is not supposed to start until the beginning of March for me. I am probably taking in around 3000 calories at the moment as my body fights the harm the treatment is doing. Lots of Fortisips help get the calories up.

The progress of the treatment seems to be like going down a bumpy hillside. Always downhill, but occasionally some rises that take you up just a little bit before going down again. My clinical team seem to feel that I am probably doing better than the average. I am grateful for small mercies! That said the Drs think I’ll be using tube feeding by the end on the coming week – at least partially. The dieticians have other thoughts about me continuing to eat “normally”.

Pain wise it is really strange. As long as I don’t aggravate my mouth and throat I don’t have significant pain. Paracetamol is working for me at the moment, but I have a pharmacy of heavyweight analgesics in the bathroom 

Generally the radiotherapy and chemotherapy have gone as planned this week. I am still tolerating the chemo really well – the main side effect for me is hiccups for a couple of days post the chemo session!. Only 3 more weekly sessions to go; counting down!

Half way through the radiotherapy as well. 15 out of 30 sessions done, but it is probably going to get tough real soon. But I am as prepared as I think I can be.

Fatigue is always present, but at least when time allows I can still walk the dog over the hills and then feel justified in having a lie down when I get back.

Onwards and "downwards"; and I hope I don’t hit another brick wall this Sunday night.

Such a stoic post Peter. Best wishes for the remainder of your treatment.  

PFJTHS said:

things went downhill rapidly overnight

Absolutely the same for me. Being aware that things will slide didn’t prepare me from actually sliding off a cliff. My team were great at sorting me out too. Pity it was over New Years Eve and I had to watch the fireworks over Mumbles from my hospital bed. ( nobody to fit NG tube that day and I needed rehydrating so they kept me in) 

PFJTHS said:

The dieticians have other thoughts about me continuing to eat “normally”

Yes, funny that! There is the opinion that your throat muscles will atrophy so much in a few weeks ( despite the exercises you MUST do)  that you’ll end up being tube fed forever….

I remember Hazel telling me that in the midst of mouth ulceration and pain her dietician suggested fish and chips! 

Well done Peter. You’re well prepared. You’ll be fine.