Hi Nicola,

Great to read that you're feeling pretty good at the moment. You sound like me in that you're 'doing more' and resting less! I seem to have more energy these days, but then forget I should be building in some rest time into my day!  The feelings of fatigue seem to bite me on the bottom during early evening, when I drop off on the sofa around 7o'clock. I have to catch up with the soaps the next day!

Glad you're feeling hungry and you've finished one lot of antibiotics!

You and Simon seem to be making great progress and it's brilliant that you can both offer support to Irene and others on the site!

Take care and keep up the good recovery!

Hugs, Jo xx

Hi Nicola,

I'm really glad to hear that things are still generally moving in the right direction for you.

In relation the the PEG removal - they adopted the 'pull it out' option with me (or at least I think they did!).  The sedation was a strange affair - the nurse said that I would remember what had happened immediately afterwards but that a few hours later I would have forgotten most of it - she was right. It is a bit like having a vivid dream that you can remember as soon as you wake up but then you forget a hour or two later. I remember the nurse putting the medication into the back of my hand then a few minutes later the doctor (at least I hope he was a doctor and not a passing hospital porter) came in and lifted my gown and started fumbling about with the tube. Next thing I know and hey presto he's whipped it out. There were no stitches - the nurse put a dressing on it and told me to change the dressing each day for a couple of days. There was a slight amount of bleeding/seepage but that was gone after about 48 hours. All I have now is a small round mark that I guess will fade in time. I know you've had some bad experiences with your PEG but you really don't need to worry about the removal. It is wonderful not having that tube flopping about everywhere. I now have a months supply of the milkshakes sitting in my garage and they say that they won't collect them - they told me just to dump it but it seems such a waste.

I'm keeping my fingers crossed that your tongue swelling goes down in due course - I feel that it most likely will as it's still only a short while since your treatment finished. I still have swelling and tenderness around my neck and my treatment finished over 4 months ago. The oncologist told me last week that I should not anticipate getting fully back to a 'new normality' for about 12 months. Things improve quickly at first but then they keep on improving, albeit slowly, in the months after that. I'm really hoping that my saliva glands begin to creep back into action because it is tedious having to take a sip of water every two or three hours throughout the night.

My eating is slowing getting better - I'm now having those microwave meals such as cottage pie, shepherds pie and the like. Waitrose or Tesco do them and they go down quite easily. Pasta tubes with cheese sauce also works for me.

Good luck, Nicola and keep up with the good progress you are making.

Simon xx

Hi Nicola

Thanks for yours and hope your recovery is continuing to gather pace.  As it happens I was prescribed Gel Clair last week, and I find it helpful.  The only downside is that like almost every medication it is aniseed flavoured.  I can hardly taste a thing, but I can taste aniseed and it's a flavour I've always hated - sod's law!

Well I'm now pump feeding Jevity through an Abbot Freego machine and so far so good.  What I hadn't realised though is that the calorific content of these big bottles is much less than expected so my dietitian wants me to supplement wth a couple of bottles of Ensure as well - not keen on this as it was making me feel sick from the start, but will do as I'm told.

Do you have any tips/recommendations for freshening up the mouth?  Rather than the not eating, what is really getting me down is the permanent evil taste in my mouth.  I would dearly love to drink fruit juices but anything with even the merest hint of fruit just burns my throat.  I jump from chewing gum to spearmint polo mints to tictacs to glucose sweets, but after a few seconds they too start to nip.  I've been eating Mini Milk ice lollies but finding them pretty flavourless too.  All suggestions gratefully received!

Thanks Irene x

Hi Irene,

I used to gargle with bicarbonate of soda (go easy though as the sight of foaming at the mouth can be quite alarming). I also used sparking water instead of still - after a while though that started to burn my tongue. My mouth was like Gandhi's flip flop.

My wife got me a selection of sugar free sweets/gums from the Holland and Barratt health shop. One was called Slim Fruits (smooth pastiles that come in a little box) and these were nice and mild - peach melba flavour worked for me. I would only take sugar free due to the risk to teeth from a lack of saliva.  

Good luck and I hope that next weeks treatment goes okay.

Simon XX

Hi Simon and everyone

Thanks for that tip - I'll try and get to an H&B sometime soon to look for these.  I've also been trying sparkling water instead of still which I found was quite refreshing.

However things have gone pear-shaped with me again since Sunday.  Now the Jevity pump feed is being spewed up minutes after I take a pause from feeding - along with all the anti-emetics.   Started off on Sunday with the excess glut in throat making me choke/retch then the Jevity started coming back and OMG now I have tasted that stuff, I never wanted to put another drop of it inside me for fear of the taste coming up!  Long session with my special nurse yesterday after Radiotherapy (she witnessed severe puking on glut/empty tum) and all to be reviewed today when I'm due for chemo.  She's going to get me a nebuliser.  All a vicious circle - the only advice they can give to help with the glut is to keep hydrated to keep it thinner, but now with all the sickness nothing, not even a syringeful of water is staying down.  Rang hospital last night who agreed not to take any more feed or painkillers till I've been seen today.  I doubt whether I'm fit for chemo and would be quite relieved if they admit me again to sort this out.  With no painkillers my throat is like a furnace so hoping they give me a nice injection to float away on!

My daughter has just arrived to take me to Ninewells, more anon.

Irene x

Hi Irene,

I'm really sorry to hear that you are having a bad time.

Based on my own experiences it really sounds to me as if you are at the point where you need to be admitted to hospital to allow them to sort your sickness out. That is what worked for me and I found that the doctors I saw on a general ward were better equipped to deal with the nausea. It can be a case of experimenting with various different drugs in order to find the one that works best. Make sure that you keep track of what you take and when. Once the drug that works is found you will need to understand which one it was - I remember that when my nausea first cleared up I had taken so many different medications that we were unsure which one had worked!

Good luck, Irene - we're all thinking of you.

Simon xx

Hi Simon

Just a quick update to say I've been in hospital this week and am feeling much better again.  I was admitted on Tuesday for 3 nights, same routine as before they put me on a syringe driver with anti-emetic, painkiller and a hydration drip.  They've also changed my PEG antisickness med to same drug as was in the driver (Metaclopramide I think) with Levomepromazine as backup.  Feed has also been changed to a different type with reduced dosage over longer hours to be built up gradually.  So far all is working very well so fingers crossed.  I'm having a very quiet weekend before my last week of treatment starts on Monday - now that's a nice thing to be saying isn't it?  You did tell me it would pass quite quickly and it has.  I didn't get my chemo session on Tuesday because I wasn't well enough but there are no plans to replace it, I will just have had 5 out of 6 cycles which I gather is common and acceptable for this type of treatment.

I now have a very thorough spreadsheet made up to record exactly what I'm taking and when, so thanks for that advice.

Hope you and all my other chatroom pals are doing fine and having a good weekend.

Love Irene x

Hiya Irene,

That's blooming brilliant. Sickness sorted and only one week to go.

You're right about missing chemo sessions being common - I missed two and was a bit concerned until they told me that people rarely get to do all six.

I'm really chuffed for you.

Have yourself a good weekend.

Simon XX 

Hi

I'm so pleased you are all progressing well!