Hi Jo,

Yes it seems like you had a little bad luck with the PEG location, mine went straight in but then I'm sure I have a much bigger tummy than you and a lot more surface area to aim for:laugh:.

It certainly isn't the doddle I had been reading about before having it thats for sure. This is my 9th day with it now and I can finally sneeze and get up off the sofa or out of bed without crying out in pain.....in fact I forget it is there sometimes until I catch it on something. I was in A&E this morning because I woke up with excruciating pains in my right bicep just above a massive bruise where I had the cannula in from the PEG ftting, I thought I had a blood clot but it turns out I have a torn bicep from, wait for it, pulling myself out of bed one handed because I could't sit up due to the PEG pain! :laugh:

Its now scabby and itchy but no pain and I can clean and flush it 3 times a day no problem.

Hang on in there it will get better! just take it very slowly.....its unfortunate timing with the treatment starting Monday but you will smash it.

Best of luck and keep me updated

Al

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Best of luck for tomorrow Jo!

Al

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Thanks Al .. a long old day ahead tomorrow - and my chap isnt allowed to stay with me .. so will be kindle , laptop and perhaps a few naps.

Lord, fancy tearing a muscle in ypur arm but I totally see how that can happen - getting out of bed is the absolute worst and I seem to have a regular 3am bladder alarm lol .. if there is a fine art to getting up without pain I havent found it yet .. and how many times can I drop things on the floor these past  days?  - I am getting quite strong at squats now though lol

I will let you know how it goes - I will prob post here whilst I'm in there , I will be that bored 

Jo

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Hi all, hope you are doing ok and recovering from having peg fitted, I have seen my consultant today and it was good news, they found abnormal cells in my throat and polyps on my vocal chords, he is confident that they got everything and at the moment I need no further treatment but they will be seeing me again in 3 months to check everything is ok. I'm elated but feel so guilty that you are suffering, I wish I could wave a wand and make things better for you. I will check in occasionally to see how you are doing but I really don't know what you are going through so all I can do is send huge hugs and lots of love and to say thank you for being there when no one else was. 
love and positive thought always 

sue ♥️Xxx

Fantastic news Sue!, I'm made up for you!....Magnum of Champagne to celebrate I reckon!,

Don't feel guilty at all!, I feel like I have dodged a bullet tbh.

I have just returned home from first and longest day of chemo/radio....all in all it wasn't too bad. I have a bag full of meds to counteract the chemo so lets hope they do their job :happy:

I feel a bit weird but strangely enough its my throat.....I didn't feel the radiotherapy and i'm surprised its sore after only one zap.....could just be my imagination and just a result of the long day, lets see how it feels tomorrow.

Get out there and enjoy yourself Sue. Take care and drop us a line once in a while.

Jo, how are you?.......you are 3 days ahead of me....I hope its going well?....little bit worried you haven't posted.

Al

xoxo

Hi Al

Sorry for the delay .  Past few days I was whacked with nausea and fatigue .  I have no appetite because of the nausea which doesn't help energy.  I am taking anti sickness meds they prescribed but I will be meeting with CNS today to see if there is more they can offer that is stronger ..

Tried dry biscuits but hard going as mouth is dry .  Hopefully the chemo nausea dwindles and this  is not lingering 

Managed to knock my PEG in radiotherapy session yesterday and it kept weeping blood , which is bummer as it was doing so well.  No pain but perhaps I disturbed scab/clot , seems to be stable now .

Hope you are coping okay
 

And Sue - I agree with Al  , you shouldnt feel guilty or obliged to linger here  .. far better things in life to focus on .. we are just happy to see positive outcomes from others and expect them to scoot on out of here - (in fact you better no even be reading this ) 

Jo

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Jo

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I am feeling not as queasy at the moment .. and they are leaving me some more anti sicknoess tomorrow to try
 

They told me the nausea will ease over the next few days - hallelujah!  I have lost more weight as a result of no food so they want me to starting introducing the PEG food in daily .

I know the drained feeling for sure .. I can't  imagine working and enduring this 

And yes lol - the mask,  as soon as its clipped I instantly start  clearing my throat and swallowing . I keep getting hiccups too (side effect to chemo I was told today) so have told them if hiccups kick in when they start that beam l will flag them to stop .   Four attempts at the pre therapy scan today , they had to do quite a few adjustments - perhaps due to weightloss too ‍♀️
 

Week  one nearly done though ️ 

Jo

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Hi Jo,

How are u feeling?

The chemo has totally wiped me out!....oh my god......I don't remember ever feeling this ill for this long!.

I had the chemo last Wednesday. Thursday I was so nauseuous I could barely function, the nausea eased after that but I have zero energy, feel dizzy all the time, I'm constipated and have numbness in my fingers and toes!......wth!.

This is awful, I hope you are coping better than me......its an almighty effort to do anything let alone the 2 hour round trip for radio....

Somehow I have managed to get out and walk the dog 3 times a day the last 2 days but each time I get back I fall asleep on the sofa....all I want to do is sleep. :cry:

Al

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Oh Al 

I was wondering how you were coping .  I have been floored by the chemo , today and yesterday seemed to be a  final turning point, 6/7 days on .  I have not eaten since my Chemo - nausea consumed me and meds barely kept it away .  I dont have numbness but I do have  bad tinnitus which comes and goes and my ears feel full and muffled.  I was expecting a few ropey days but nothing like this or this prolonged .  I have just started to get my appetite back and feel semi normal again but still lack any ooomph .  
 

I think we must go into auto pilot to get ourselves to therapy - I think , how did we cope with travelling to therpay too feeling like this ., like you 2hr round trip .

I lost 2.5kg in weight this week and they asked me to start using my peg but I havent - i know i can gain it back now my appetite has returned , I have a few days before the next weigh in lol 

Some news too.  I got a call Friday afternoon when i got back from the hospital to say that Tuesday (tomorrow) they plan to mould me a new mask after therapy.  Apparently , my Doctor had relayed a message that my tumour had shrunk so much so fast they needed to now alter the treatment plan and the Doc was very happy .  It does mean a long morning tomorrow as this is being fudged in with mould and fresh CT scan but from all this misery of chemo , I have something positive out of it 
 

Jo

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