Help needed; it’s all getting a bit grim.

Allthecolours

Hi Louisa

Yup, it’s fairly grim. Everything you are experiencing seems to be the norm. Apart from you are very unlucky to have had 3 PEG infections. My hubby only had 1 PEG infection and that was before treatment started.

Ask for long lasting morphine if you don’t already have it. Ken started on that in week 6 and took it for the 2 weeks that followed too.

The stringy clear mucous stuff was bl**dy awful and kept us awake for many a night. It was short lived though. He used to retch and gag all day and night.

But.....he’s 14 weeks post treatment now. He’s just enjoyed a dinner with Yorkshire puds and gravy. No meat though as he just can’t eat that now. He’s also now having a can of John Smiths.

So my cheery vibes for you are that you will need to grin and bear the next 3 weeks but after that it’s onwards and upwards. And we’ll all be there to help and cheer you on.

Firstly, "feck-feckity-fecking feck".

Those last two/three weeks are without a doubt "fecking" hard work Louisa, I really feel for you; but on the "bright" side you've done 28 sessions and just have the 7 left, it will pass and you'll soon be free of the routine. I slept every moment I could, often (as I've mentioned on here many times before) in the bath which worked for me. How's your weight? I had to spend the last four days as an in-patient due to loss so hope you're managing that OK. You're within touching distance now, it'll soon be a memory; possibly even a life enhancing one in the long term, it was/is for me. xx

Oh, Sharon, that’s so nice.

So good to know your husband has come out the other end. And Yorkshire puddings! And beer! Very cheery indeed. I will never take food and drink for granted again.

I think my morphine is the ordinary one; I’ll check.

Thanks so much for replying, it is truly appreciated.

Louisa

Hi Louisa can send yiu positive vibes but I would be lying but take heart it doesn’t last forever. If yiu need inspiration look at my blog yiu will see how rough I was in week 7 but hey 8 Weeks later I dragged by body on a planet to Spain mad foolish or what but I did it. the mucus will become a distant memory thu k of the end game the pet ct scan and no more cancer ok the side effects are challenging and after treatment it’s like being thrown to the lions den but yiu will come through the other side Best advise keep hydrated as hard a step it might seem it’s vital and if yiu thunk youve  an infection get it looked at tomorrow  please .

Plus keep on top of pain killers the clues in the name pain killers. Inwas in 8x 30 mg comcodomol 6 ibuprofen and oramorph don’t be scared to ask for more ,when time comes younjustbdo a phased withdrawal offvthem good luck and here’s a few feck feck feck 

H x

Thank you for joining in the holy chorus

 I have no idea how you managed to sleep on the bath, but it makes me chuckle to think of it. Poor you - losing so much weight. I have lost a total of half a stone, but that seems to be continuing, so hopefully won’t lose much more. I pump in as many Ensures as possible and then concentrate hard on not throwing up. It’s eating, but not as we know it. Poor, poor you, in hospital with weight loss. I can imagine you feeling awful, on those horrible sweaty sheets that don’t quite tuck in enough.

Right, I will concentrate on resting. Probably not in the bath, though.

I’m glad it’s been life enhancing for you. Having cancer taught me to enjoy life for life’s sake; that it’s enough just to breathe.

Thanks for your reply.

xx

Yep, re. the infection, I am hoping they will forego the swab plus five days’ wait for the result and just give me more antibiotics today.

Hydration no problem as I am constantly pumping water into my PEG.

I will follow your advice and see if I can improve on my medication, which is currently paracetamol tds and oramorph prn.

Thank you for the fecks!

xxx

Hope you got your antibiotics! I must admit, I didn't get an infection but the week or 2 before it was taken out, got over granulation which was flippin sore & had to use steroid tape each day.   Fiddly!

X

Hi Louisa 

I can just echo what others have said. It will go. 
The advice for sleep is a great one. Like Mike I could sleep in the bath. Once I fell asleep and woke quite disorientated until I moved and the water was cold !!! I thought I’d died and drowned!!!!!

You say you are taking your oramorph prn! How often is that as needed.     I was told I could take it every two hours but the essence of pain control is to preempt breakthrough pain by taking morphine before pain comes through. What worked for me was long acting morphine morning and night and regular oramorph through the day alternated with paracetamol. I had really bad mucositis. My mouth and throat was an ulcerated war zone. 
I hope you see some light soon. It’s a horrid place to be. 
Take care. Xx

I looked up overgranulation. It looks very red and angry and I can imagine how sore it was for poor you.

Mine seems to go through a cycle of bleeding, then oozing pus, then antibiotics till it nearly heals up, then it starts bleeding again and the cycle continues. 

I had to have a swab before they’ll prescribe, but I managed to waltz into the nurses station and get one of them to do it at 8.30 am on Friday, so the result should be back on Monday.

Currently grateful for my PEG because I have my pump whirring away at 50mls per hour today, which is sufficiently slow that I haven’t thrown up yet today.

Thanks for replying, Hattieb2017. I hope you’re all healed up and well now.

xx

I’m glad it wasn’t some kind of watery after-death experience!!

Right, yes, you are absolutely right: prn is stupid. I had a chat with the lovely Macmillan nurse and I am now taking paracetamol and morphine four times a day. Well, trying to. Every now and then it tends to come straight back up. When it stays down I feel great.

I am struggling very badly with mucous making me gag and puke. Got given carbocisteine and it’s life-changing when it works. But mucositis sounds awful, poor you.

Thanks for saying it’s horrid because it is. All topped off with a crumbling green neck.

Yes, I will look to the light.

xx