Hi Jo/Haezel

Jo how are you getting on? Have you started your second dose of chemo?.

Radio 16 today for me.....picked up some co codamol on Monday and it has defo eased the pain but I stil cant eat, not because of the pain in swallowing (altho it still hurts even with the co co) but because of the taste.....everything I loved eating tastes disgusting and makes me want to heave.....I'm loading up thru the peg but its just not the same.

Despite being read the riot act by my nutritionist and her giving me some new chocolate flavoured shakes I still cant bring myself to get them down......grrrrrr...I'm jus hoping I ca keep enuff weight on over the next 3 weeks to not affect the mask.

Hazel how are you?.....enjoying the sunshine I hope?

Al

xx

Hi Al byes we're bsck in the U.K. am busy with greenhouse and allotment. 
min reading riot act as well forget about taste forget about enjoyment food is fuel was my mantra. Eat to live not live to eat. You WILL MAKE YOURSRLF ILL. You need calories for 15 month after treatment I was on 2000 calories a day and didn't put weight in. If you loose weight your recovery will be impeded big style. I've been at this 4 years I've seen people hospitalised. Rant over. Kerp on top of pain 

sorry for shouting f but needs must. 
m Hazel. Hope you're ok Jo. 
al read my blog www. radioactiveraz.Wordpress.com xxx

Rant away Hazel please do....I'm burying my head in the sand and not confronting the not eating thing...think thats because I have always been overweight.

I didn't realise it took so long to recover and will try my best to force some food down as well as using the PEG.

Will check out your blog now

Al

xx

No worries. Yes recovery can be varied I was a lucky one but the treatment s pretty brutal. It's in our most vulnerable area think what you do with your mouth eat drink breathe the basic human necessities. We're poisoned the fried in the most sensitive area. There's an excellent article online will send you link on receive. Remember the treatment continues to work for 2-4 weeks after. 6 weeks you may start to feel a bit more with it 12 weeks can be a rut j g point. I'm still getting small improvements but still have dry mouth at night. Hugs Hazel 

top top stand at kitchen sink pick a focal point and treat tge yuck as a bush ticker trial. Any n Dec are behind you xx

Hi Al / Hazel 

I am not too bad all considering .  I had second (LAST ) chemo monday .  Admitted at 9:30am Monday then I was all day on saline solution , weeing for Britian .. chemo finally started at 22:45pm and ended at 01:45am  - then 4 hrs of more sodium chloride.  The session ended at 5:45 , I didnt sleep a wink .  I am pumping water in my peg non stop to flush this chemo good and proper .

Nausea again is my biggest battle , I have had nearly all there is medication wise but no joy but tomorrow they start me on another new one , Lexa something or other , apparantly very expensive and not dished out willy nilly but as I am an unlucky one and radiotherpay is causing me constant nausea too then they think this is the one ( i bloody well hope so ) and yet more tosh luck is morphine has no effect on my mouth and throat pain , nor co codomal - I get more relief from basis soluble paras so yesterday they started me on some serious narcotic called oxycodone, highly addictive stuff ; I only take 2.5ml at the mo and pain is numbed in 20 minutes .  So as you see i am now chief drug tester at the hospital  .  I have gone from having a drug bag, to drug draw , to drug cupboard to drug chest lol  - next move is to convert downstairs toilet to drug room lol

Found out yesterday by chance as i bought my own peg food to hospital that i should also be having protein shake for peg so apparantly I have hoards of that arriving today too ..  

Was intoduced to a lovely nurse practitioner who has tried to combat all my issues whilst i was in .. she advised that as I move in to the heightened side effect zone , I may want to consider the  syringe driver pack to auto administer and tbh I dont care about being hooked up to  a box 24/7 if it sees me through armegeddon I am all for it .

I am holding weight on my fortisips  by PEG and maybe with the two added protien I may be able to up it higher to when I started - started at 68.8 kg and  at 67.5 so not too bad considering it is all PEG ..

I miss food loads and go around sniffing everything .. you would think that torture but i like the taste memory from the sniff lol oh but what i wouldnt give to guzzle down a cold drink with no pain .. 

No real tinnitus from this chemo so looks like i did get tweaked version 

Al,  how many fortisips / ensure are you told to take a day?  - I am told to aim for 6 , last of the day at 10pm - i am doing 4 so 5 is agenda today , 6 as of tomorrow .. 

When is your next chemo Al? 

Jo

x

Hi Jo,

I hope the new meds sort out the nausea. I was lucky enough for that not to last too long the first session. I have my second session a week today and can't wait to get it out of the way.

So sorry to hear the morphine and coco are not working for you either, funny enuff paracetamol does nothing for me. The coco seems to be doing the trick tho, strangely the pain has subsided over the last couple of days and I haven't needed to take any but I guess that is just a lucky break and will pass soon.

As you can see from my chats with Hazel my main concern is my weight. I'm really really struggling to get any kind of food down by mouth, its not even the pain of swallowing thats stopping me its the taste.....literally everything makes me want to heave as soon as I put it in my mouth but I'm going to persevere and force it down somehow. I'm supposed to be having 6 Ensure's a day (I guess thats the equivalent of what you having) but I only managed 5 today which equates to about 2000 calories. 

I meet with my Doctor on Monday to discuss my chemo and I guess I will also try the other one (Carboplatin I think) hopefully that will keep the tinnitus at bay.

Here's hoping we both make a speedy recovery.

keep me posted

Al

xx

Hi yes 6 is that magic number if ensures your get  almost  13 gram of protein per bottle. The protein helps your muscles and body to recover.  Good luck both of you it's a bush tucker trial. Might make you laugh I struggled with tea tonight so I had  an ensure. I had a video scope yesterday at ent  all ok just occasionally I can struggle with meat after a scope we had Angus burgers too dense. But I quite like an ensure nowadays. Yes strange but true. 
Hazel 

Thanks Hazel!, now I have that tune looping round in my head instead of 3 is the magic number I have 6! :laugh:

Glad to hear the ENT was all clear.....I can't wait to hear news like that. Can't imagine reching for n Ensure as a tasty drink yet :laugh: although until I started this treatment I loved all thos vanilla and chocolate shakes, maybe one day.

OMG I miss tea :cry:

Al

x

Hi Jo/Hazl,

Jo how are you getting on?....have u recovered from your chemo?.....u must be in the finishing straight for your radio as well?.

I'm still feeding thru PEG and keeping the pain at bay.....I just feel tired all the time. I have my next chemo on Wednesday and I'm trying to brace myself for the after effects.

How are you Hazel? enjoying the sun?

Al

x

Hi Al yes busy in greenhouse and allotment most days. We're back from Spain si normal life resumed. Tiredness is par for course make sure you're getting enough calories through peg 2000-2500 if you can plus 2 litres of water. It's all amount balancing meds food Sleep oral hygiene. You'll get there. 
hugs Hazel x