Hi Irene

I was 10.10 and I went down to 9.2. It happened fairly quickly and then stabilised. I haven't put any of it back on and the doctors are fine with that as I'm now the weight I should be! I think my stomach shrank after not eating for so long.

I would suggest that you try and avoid morphine for as long as you can as that's not great for the bowels! I managed to keep on a fairly low dose and didn't have patches but, when I came off it, I was quite ill for a week. The gp wasn't sure if it was an unrelated bug or withdrawal from the morphine!

Soon you'll be drug free!

Debbie

Hi Debbie

Thanks for the weight info.  That's exactly what I'm hoping might happen to me!  I was 3 stones overweight to begin with (not complaining now, better to have a bit extra to fight it off!) but if I end up a stone or two lighter and keep that stable, then I'll be happy.  Yes, I thought probably best to keep the Oramorph up my sleeve for now. It never occurred to me about withdrawal symptoms, but of course I can now see that is highly likely and will heed your warning.   I've been having a real problem wth the Ensure drinks not staying down.  I was supposed to be aiming for 5 bottles a day but at 5pm yesterday found myself still struggling with my second!   I rang my support line who consulted a Doc and said I could ditch the Domperidone in favour of the Levomepromazine I was prescribed as an extra anti-emetic to be used as required.  It was prescribed at two half tabs per day but they've said I can up that to 4 and so far this seems to be working!  Did you have Ensure as well, or some other foodstuff?  Mine comes in strawberry, vanilla and banana - it's weird that you can tell the taste if you burp or vomit!  I think I'm going to ask for all strawberry for the next batch because I seem to be tolerating it better.

Time I was back to sleep, thanks again for your help.

Love Irene

Hi Irene,

Sounds as if you've finally got the nausea under control. I think that it was levomepromazine that sorted me out in the end as well. I seem to recall that this drug was originally designed to treat schizophrenia - it did the trick for my sickness though. I hope that you can start getting the calories in now as you need to be as well nourished as possible towards the end of your treatment.

Well down, Irene - we're all behind you girl.

Simon XX

Hi Nicola -

I am new to CancerChat and I read this post about your update.  I am sorry to hear that you "never smoked and rarely drink" yet you still got this.  That saddens me, but I am appreciative and impressed with your optimism.

Hi Irene

Yes I was on ensure although I stuck to the plain one. I was told to have 4 or 5 but I don't think I ever managed more than 3 and most of them came back up! I wish I'd been offered that anti sickness drug as none of mine worked.

I know it sounds shallow but it has been quite nice not having to go on a diet this January! That's a first for a few years! Every cloud and all that! Ha ha!

What date does your treatment end?

Love

Debbie

Hi Debbie - you don't sound shallow at all - just honest!  I was tipping 13st at the start of this so I really do need to shed some weight, just hadn't anticipated it this way.  I will be very happy to come out the other side a bit lighter than I've been for years.  Also my nephew gets married on 14th April so am looking forward to shopping for hopefully a dress size smaller!  My treatment ends on 31st January.  I saw my support nurse yesterday when I was in for radiotherapy.  She has arranged for the dietician to see me again tomorrow (chemo day).  I managed a bit better the second half of yesterday, now that I'm taking more of the Levowatsisname anti-sickness pill.  She did however say they might consider pump feeding for me.  My immediate reaction was what's the point of pumping it in if it still turns my stomach when it hits home, however this will be a different type of nutrition altogether, which is very slowly fed through constantly (overnight?).  I'm now wonderig if it might be like the driver I had for pain/sickness when I was admitted to the ward last week.  I really appreciate your support and advice Debbie.  It's so kind of you to keep contributing so long after your treatment and recovery to help others through the process.  Love Irene x

Hi Simon,

Really pleased to hear you are progressing well. You seem to be ploughing on with trying new foods, I bet that feels so good! I'm really looking forward to eating again. I don't feel ready just yet, I think I will know when the time is right, but my mouth is beginning to feel more 'normal' already.

So was your PEG pulled out from your tummy or did they choose the other option of cutting it and then letting the inside stopper pass naturally? I'm very worried about having my PEG removed after the problems I've had with it and I must say it doesn't sound very appealing having it tugged out! I too was sedated when they tried to put the PEG in the first time and it's a strange feeling! Did you have the camera put down your throat too? Did they stitch the hole? Is it sore now?

It's interesting to know that salt water can help with saliva - thank you for that tip. I've been advised to rinse with warm salty water to help keep my mouth clean and sooth any sores but I will also keep an eye on any benefits to extra saliva. I've also noticed my chin becomes slightly swollen sometimes so it's interesting to know this could be another side effect of the Radiotherapy. I had a very swollen chin following my surgery last year (it's hard to believe my operation was already four months ago!) and that was due to my lymph nodes being removed and it took around two months for my chin to reduce and look normal again. I also have lymphedema in my tongue. Unfortunately, when my teeth were removed, the graft on my tongue swelled out towards the side of my mouth and has not yet gone down in size. Radiotherapy hasn't helped this either so I have to wait and see if this swelling reduces on its own. If not then it could mean another tongue operation  

On the whole I'm feeling pretty good. I'm still getting some pain in my mouth, which has been slightly worse these last few days. My nurse suggested substituting cocodamol with paracetamol a couple of times a day but I was finding I was in pain before my next dose was due, so I've given up on paracetamol for now and have gone back to cocodamol three times a day. I'm wondering if the increased pain could also be due to me getting less rest now that I'm feeling so well again, so perhaps that's a sign that I need to slow down a bit and rest more. I'm also beginning to feel very hungry at certain times of the day, probably because I'm burning off the milkshakes rather than resting all of the time. The good news is I've finished one course of anti biotics for my chest infection so that's four doses of medication I no longer need to remember each day! Just a few days left of the other anti biotics for oral thrush and I can feel the improvement already. My sleep is still broken but I'm getting there.

I'm very pleased that both of us seem to be making such good progress, I'm so happy that the worst is now behind us.

Speak soon,

Nicola

Hi Irene,

You are doing so well. You sound as though you are taking on every bit of advice we give you and are asking for all of the right help at the hospital. You're halfway through week four now and I promise you it will fly by from here. Just incase no one else has mentioned this already, there is another mouth wash called Gel Clair. You can order some samples online for free and my Hygienist advised half a sachet at a time, diluted with water works well to sooth any mouth sores. Or gargling can help relieve throat pain. I did not need to use mine in the end as I found Diflam to be very good, but something to bear in mind.

I'm feeling so well already after only less than four weeks of Radiotherapy ending, so you really don't have far to go now. Keep up the good work!

Nicola xx

Hi Jillian,

Thank you for your post. I'm guessing that you are new to this chat forum due to having some unfortunate experience with cancer yourself. I hope you have found it a good pace to let off steam or find some support. It's certainly been a great help to me.

Take care,

Nicola