Hi Hazel,

Thanks for the heads up (I think :cry:).....at the mo I'm managing with just Ibuprofen and Paracetamol but I think the Doc has ordered some stronger and some soluble ones for me to pick up tomorrow.

I shall make sure to mention to the doc about the other meds you mentioned and I will make sure to stock up on them.

I continue to tick off the days and can't wait to get thru this and get my life back.

One good thing is that my team are winning......but I cant even cheer them on :laugh:

Have a good evening

Al

xx

Hi Al

Aha I know how you feel , watching peeps living simple lives and being  so damn envious

I am coming to the end of week three and pain is much the same ,, ulcers still live happily in my mouth and look like not moving out anytime soon.  

I am solely on PEG now for fluid and food as my throat is like I have gargled with glass .  I met with my consultant today to discuss next Chemo on Monday (wahoo). .  I have opted to stay in over night for this one so chemo can be given slower and I can be hydrated by drip throught out and after through the night .. they are tweaking my chemo due to the tinnitus last time .  
 

I am now on 10ml of liquid morphine every  4 hrs , anti sickness every 6hrs and paras inbetween .  I have to up PEG food to 6 bottles a day and try to reach 2 litres of fluid everyday via PEG  .. I have a spray to use on ulcers 3 times a day too ..

Today is the first time I have seen my consultant since treatment started , she had a look in my mouth and said she was amazed how the tumour had shrunk given it pretty much took up the whole left side of my throat/mouth  ..

The mucus is vile isnt it ..  today i seem to have rushes of watery saliva too - its like it cant make up its mind , thick gloopy or a flood of very watery saliva that somehow feels wrong too ..

oh and some of my nape hair has started fall grrrrr! 

lol - so all in , I'm on top of the world lol and to think it can only get worse is the icing on the cake

Jo

x

Hi Jo,

First of all brilliant news about the tumour shrinking!.

Hearing what you are going thru makes me feel like a bit of a wuss. I don't have any mouth ulcers yet but swallowing is getting more and more difficult. I'm still able to eat normally when the pain killers kick in and I cram in as much food as I can during those periods. For some strange reason I'm stressing about using the feeding pump....no idea why cos I'm well used to flushing and rotating now.

Like you I'm alternating between a bone dry mouth and one that is full of claggy saliva (actually woke me up last night a few times it felt like gloop was trying to choke me). The problem with the saliva is that I feel the need to swallow more often which hurts :cry:

Will mention to my doc when I see him about the tinnitus (that is still the only sypmtom left over from the chemo and happens maybe twice a day).

No hair loss as yet (I haven't much to lose anyway :laugh:)

Radio 13 today at 12.45 then 2 days rest thank god.....also pick up some soluble pain killers from pharmacy today so will be shovelling them in over the weekend.

Try and have a good weekend and we'll catch up later

Al

xx

Hi Al 

The mucus I cant bear to swallow so I am offloading into tissue , I am literally taking a toilet roll everywhere with me and and a bag for  bagging tissue .  I have noticed the more fluid I PEG the less mucus I get , at least it seems that way , so I will monitor this . Oh and this could be why night time during sleep it is worse .. 

I am literallly like a yoyo with the PEG , water , food x  5 today , anti-sickness - morphine,, paras all have their time slots - I am wondering if i should set alarm during night to make it continuous cover as I am normally awake around 3am anyway - so I am becoming a natural at PEG feeding - I am still attempting water by mouth when all painkillers reach optimum .. if only to keep swallow muscle function as they seem to worry about  that .  So tempting to PEG a glass of wine lol but alas too mnay drugs to interfere with 

I havent yet done my own forward amd rotate on PEG ,, although not painful to do , it is so cringy to watch lol *shudder

So , halfway point - just gotta get this damn chemo out the way .. 

Have a great weekend and drop in if you can !  

Whinge to you soon !

Jo

x

Hi Al please advise team befire next chemo re tinnitus chemo can be changed to carbo platin which is gentler in ears. Tinnitus can't be reversed so be careful. Yes soluable tablets are a gif send you can send them dien your peg when you can't swallow them. Re football I lost concentration for most things. 
Try ti enjoy weekend. Hazel 

Hi Hazel/Jo,

I will defo talk to doctors before next chemo Hazel. They actually tested my hearing before the first one and said it was good enough to risk Cisplatin, however the tinnitus got really bad at one stage and is just not worth taking the risk. I also noted that you said I can take the soluble tablets thru my PEG....think I will start doing that as well cos they burn when they go down.

I'm seriously thinking about using the PEG to feed today as even with the pain killers I'm struggling to swallow.....this really sucks and is getting me down tbh and I know there is worse to come...I know its not as bad as many other people and the treatment they are going thru and I feel like such a whinger whinging about it.

Jo have you been using the pump or the syringe to feed with....I have a load of bottles of vanilla flavoured Ensure....I can't remember if the nutritionist said I could use the syringe to feed that thru and I'm reluctant to try it in case it clogs it up....I don't want tou use the pump until I have spoken to one of the nutritionists and maybe get a brush up course on how to use it.

Even bottled water tastes sickly sweet now and I'm struggling to get it down....have bought so many different drinks but can't seem to stomach any of them.

Like u Jo I can't bear to swallow the mucus and find myself spitting constantly (in to the toilet) which is a pain in the butt.

I've gone from Grumpy Al to Angry Al and as much as I'm trying not to I'm feeling sorry for myself.....grrrrrrrr thats just not me!

Its our annual Eurovision party tonight and the family are coming over....I'm trying desperately to get myself up for it but its a struggle.

"17 more to go, 17 more to go".....thats my mantra (notice I didnt mention chemo, that really drags me down :cry::laugh:)

Have a good weekend both of you and thanks for being there to vent at.

Al

xx

Bizarrely Al, I have had no training on how to use my PEG .. my nutritionist just talked me through it , but very brief . Also, I have no pump , only syringes lol - now I am worried so think I will drop her an email .  I have been using PEG solidly for a week but its time consuming to get all your fluids in .  I was told to measure  2 Litres of water and keep taking from it till it was all gone , and thats daily .  Tbh , as much as they push for us to keep eating and drinking by mouth the pain is too unbearable and i think trying just aggravates the areas more and makes it even angrier -and more painful  so my mouth is on strike / out of action / not in order lol .   I dont even speak , too painful , my chap said its like we have had the longest argument ever lol - it is quite lonely as I cant even call firends or my mum to chat to  occupy my mind .. me and chap sit on sofa next to each other in the evening texting one another lol 

My PEG food is Fortisips - strawberry or vanilla - its consistency is like a yogurt drink -  I dont know about  Ensure but assume if thats what they sent it will be fine to use and probably is  the same consistency as the Fortisip.  Let me know on that Al? I'm intrigued you have a pump

All my meds are liquid and going via PEG , and I have soluble paracetamol too - i just flush it with water after to make sure all the medication is out and not sat in the tube . 

I am struggling with morphine , although it keeps me on top of the pain it makes me feel so woozy and light headed , it is not pkeasant when trying to do every day chores .. i really hooe I don't have to up my intake of it as  I will be good for nothing , in fact I may alternate dosage to 5ml then 10ml 4 hourly  , see if that helps and still gives me the pain relief . 

I hope you do manage to enjoy your evening - I think Ukraine will win personally as it always been more about politics and if we dont come somewhere semi decent with Sams song, then I think we retire 

I'm a Jo with no mojo right now too -  especially after seeing how much hair came away when i was showering today .  I know its not all over loss  but I am having to think about what I do or hide the patchiness  , uff! 

Have the best evening you can Al x

Thanking you for the hints and tips , Hazel x

Jo

x

Hi Al yes do syringe yoour medication , if it's not soluable just crush it with some water or Luke warm tea  coffee we pumped 2 litres of water / tea into mine each and every day. Yes you can syringe ensures you can also dilute them a little with milk. As for water it's crap hence why mine went down the tube , try sipping soda water or flat Diet Coke and can dislodge the mucus. Rinse and spit  became  my middle name. I used to sit on sofa with a box if tissues plus horrible as this may sound pulled the stuff out with my fingers if need be. I had a carrier bag at side if me ti put the nasty tissues in. Mucus is your mouths way of saying what are you doing to me so creates more to try and protect yiur delicate tissues. Sadly it's often replaced with the dreaded dry mouth which is worth a chapter all on its own . Try to enjoy the party food and drink play such a huge part of our life's , people really have no idea what we are going through. A good thung for your friend to try id eat 4 dry cream crackers no water then no water for 30 mins that will give them a clue as to how our mouth feel 24/7. Dry mouth can still catch me out when I least expect it. Our treatment is probably the most brutal simply beat Aus we do everythjng with our mouths ,eat breath talk sleep and drink. The plus point is our treatment has an excellent success ratio. 
Hygs Hazel xx

Hi Jo/Hazel,

Great advice as always Hazel, I have now started to feed myself thru the PEG using the syringe, can't be arsed with the pump, and also have started using the syringe for my meds as well, altho the paracetamol just aren't cutting the mustard at the moment, think I will have to ask about going u a level.

Jo I totally agree about the feeding by mouth, I was so cocky last week because I wasn't in pain, I didn't expect it to hurt this much tbh and I know it will probs get worse.

I find myself constantly apologising for spitting :laugh: (in the toilet I might add not on the floor :laugh:)

I still managed to enjoy the Eurovision last night and thought we deserved to win but totally understand Ukraine getting the sympathy vote.

I've given up on talking too....it just hurts too much.

Radio number 14 tomorrow....almost half way.....

Its good to vent and thanks again both of you for being there to listen

Al

xxx