Hiya Nicola,

Welcome back and Happy New Year to you. One things for sure - this year will be better than last year!

I'm glad to hear that you are making good progress and that you are slowly feeling stronger. You are making faster progress than I did but I put that down to my advanced years! Sorry to hear about your PEG though - the PEG tube has really been problematic for you right from the beginning. I hope that things improve now that you can adjust it.

I have deliberately refrained from using my PEG for 5 or 6 days now. This is in readiness for its removal tomorrow (which I'm going ahead with). I'm not quite managing to get in the 2500 calories orally but my weight is stable so I'm happy to go ahead. The tube has really been a life-line for me as I went several weeks without any food or drink by mouth. Having said that I'll be glad to see the back of it. It still amazes me to think that they weren't going to give you a PEG.

I'm sure that your mucus situation will resolve itself soon. How I hated carrying a blooming kitchen roll around with me!

The oncologist looked at my ulcer on Friday and said that he was confident that it wasn't anything to worry about. He was of the view that where my tongue is still slightly swollen it was rubbing on my back teeth that this had led to the ulcer. The ulcer has shrunk slightly over the last 48hrs and is now less painful than before. That is a huge relief because, as you know, these things can play on your mind. I'm sorry to hear about your ulcers - I found that Difflam was good at dealing with the pain (it stings a bit at first but then it goes to work and the pain subsides for a couple of hours).

Well done for getting this far, Nicola.

Speak soon.

Simon xx 

Hi Irene, just wanted you to know that I'm thinking of you and hoping you're ok. I really understand these difficult times as it wasn't so long ago I was in your position but it feels so long ago already! Three weeks after treatment has ended and I'm feeling pretty good! This will be you before you know it!

Also, the book Annabel told you about is a brilliant read, I couldn't put it down. Annabel told me about it too a little while ago and I went straight onto Amazon and ordered myself a copy.

A big thumbs up for completing week three, rest up over the weekend xx

Hi Simon,

How was the removal of your PEG? Did it go ok? Was it all straight forward and pain free? Are you still finding it a little painful to eat/drink? I hope you're doing ok. Yes I agree that any ulcer, pain or lump in the mouth is going to be a huge worry for us going forwards, however, we must remember that the chances of it being anything serious are very slim after the bout of radiotherapy we have had, as the whole area has been sterilised. Still well worth getting checked out though, I've had my oncologist look at a couple of ulcers in my mouth too during treatment.

My PEG is lot better thanks, the nasty big black scab has now fallen off following the use of some steroid cream twice a day and I can now spin it again. I had a review yesterday with my head and neck nurse, dietician and speech therapist who all said that they are really pleased with my progress and say I'm doing really well. I had to get a second round of anti biotics from my GP for my chest infection, these are stronger and I have to take four doses a day. That along with another dose of another anti biotics for oral thrush, four feeds a day and three doses of pain killers and a laxative, I feel like I'm constantly filling my PEG with something! I'm well used to it now though and do it all without thinking about it. God only knows what I would have done without my PEG, as troublesome as it has been for me! The mucus issue is noticeably better but I'm still carrying a loo roll everywhere I go!

I say well done to us both for coming this far!

Speak soon,

Nicola xx

Hi Niccola,

So glad to hear you sounding so upbeat and chipper.

Happy New Year to you and wishing you all the best

Hugs

Annabel. xx

Dear Simon and Friends

Bless you Simon, I saw your message just as I was getting ready to leave for hospital but didn't have time to reply and they kept me in for 3 nights which was just what was needed to sort things out.  I retched and vomited all night.  Just seemed to be an endless white then yellow river if you get my drift.  I even wrote a rather dark and disgusting poem about it later!   Rang hospital who said no need to go straight in as my temperature was fine but to report to the Ward first thing going in for radio downstairs anyway and they would admit me to try and sort things out.  I really should have called earlier in the day but it's a lesson learnt.  They did say that it was likely the double treatments to compensate for Public Hols may have caused a sudden excess of mucus.  Anyway I also had a touch of thrush, so medicine for that.  Was put on a morphine/anti-sickness driver for 2 x 24 hour infusions plus rehydration drips.  They reviewed my usual meds (I am on Domperidone - why does it sound like champagne? four times a day) plus a 3 day thing the name of which I've forgotten, plus steroids plus the anti-sickness drip that goes through just before the Cisplatin.  They have always stressed that they can try lots of anti-emetics if required.  So on the Ward I also had 2-3 injections for sickness and they've given me some of that home with me too.  I was also on Oramorph and that was  brilliant, however I could tell that my dedicated support nurse was surprised they had put me on it so soon.  I have some of that at home now too but have not yet taken it as the throat has calmed down considerably and would like to hold off using it for a bit longer as I know I'll need it in later stages.  So back home yesterday like a new woman, albeit almost completely PEG feeding now.  Just hadnt expected it all to happen so suddenly!  I'm struggling a bit to get the right quantities down me but I think that needs my bowels to swing into action first - sorry TMI but I guess we've all been there!  Thanks for the info re A&E though, it's a 40 minute drive from home to Ninewells in Dundee, but there is an A&E at our local hospital in Perth so will bear that in mind.  I hope all is well with you, I'm not very good at picking up all the threads and I don't want to sound all 'me me me'!  Oh yes I think I remember there is no concern about your mouth ulcer, thank goodness.  I have a few of those at the mo which they say are not linked to the radiotherapy as you can see a definite line now where they are treating me.  It's more to do with teeth rubbing against tender/swollen tongue as you also described.

Nicola - so glad to hear you are on the road to recovery albeit slowly.  Pity about further PEG problems though, it really has been a thorn in your side added to all the other problems you could well have done without.  So nice to know you have been thinking about me and yes, that is me at the end of week three now.  I have learnt the lesson to ask for help when needed and have called my support nurse again today.

Annabel - lovely to hear from you.  Re sweets I've been trying everything under the sun I think.  For a long time Ricola herbal sweets were working for me but now almost anything with fruit in nips like mad  However today I did discover that I am enjoying sparkling water better than plain so that's a bonus.  I just wish I could find something that tastes nice though.  Strangely enough I always manage to eat well on chemo days in hospital.  I think they said this was likely to be the effect of one of the pre chemo flushes?  I was amazed to eat a whole bowl of soup and then custard on Tuesday!  That reminds me of another story, when I went down from chemo ward for radio I was hooked up to driver drugs on one side and chemo drip on the other.  When I came out of radio (helped by therapists to dress) I was sitting in the waiting area for the porter to wheel me back to ward when I realised my right hand was hurting like hell and when I looked down it was a big balloon.  The radiotherapists said don't worry a nurse is coming for you shortly (to escort me back to the ward).  I said I was fairly sure this needed urgent attention, but luckily my nurse arrived seconds later (an auxiliary I think) and went oh my god GET THAT SWITCHED OFF NOW furiously stabbing at buttons on monitor, and marched me back up with my arm in the air.  No great harm done but fortunately it was only the pre-chemo flush going through.  I asked my chemo nurse what would have happened if it had been the chemo going into tissue not vein and was told ' erm something more drastic altogether' eek narrow escape!  Oh yes and I got the book and read it within a day.  I have now given it to my chemo-buddy Donna who has been through a very similar experience with having tongue reconstruction.,  Thanks so much for recommending it.

Lots of love and thanks to you all.

Irene x

Thanks so much Nicola, that's really encouraging.  I'm so pleased that the worst is behind you now.  Yes I found the book a tremendous read, very uplifting and have passed it on to my chemo buddy Donna, who like you had to have part of her tongue reconstructed.  My goodness what Lia Mills went through with that dreadful leg problem on top of all the other horrors it makes my little hiccup pale into insignificance.  However having said that I was very much in the gloom in the wee small hours last Sunday night and feel totally different today.  I will be having a quiet weekend though!  Lots of love, Irene x

Hi Nicola, Simon and Irene

Well done to all of you!

Simon - your comment about forgetting to put the cap on the tube made me laugh. I'd forgotten about that! How soon it all becomes a distant memory!

Nicola - you are doing amazingly well! Once you start to improve it really happens quickly so I'm sure you'll continue to see massive improvements. I had my first scan after 10 weeks. Is that when you're to have yours?

Irene - I kept putting huge pressure on myself to try and eat but I wouldn't worry about it. I didn't eat anything for weeks but once I started eating, there was no stopping me. A bit like simon who's about to tuck into a Chinese already!

Keep up the good work all of you!

Debbie

Thanks Debbie, that's really encouraging.  I think I was trying to force myself to eat for too long.  I'm still trying a little porridge in the mornings but a couple of spoonfuls is about as much as I manage.  The other end has now starting moving so hopefully I'll get on better with the tube today.  I too have have been having fun and games with the caps (one has broken off, the day after I've seen my PEG nurse of course) and getting stuff everywhere!  Looking forward to a couple of quiet, short visits today.  Do you mind me asking how much weight you lost over the whole process and am I correct in assuming that it drops off in a whoosh once treatment ends and they no longer have to keep you the right weight to maintain the mask's fit?  Love Irene x

Hi Irene,

Sorry to hear that you're going through a tough time at the moment. I remember the wide varieties of anti-sickness meds. One of the doctors asked me which one works best - I had to laugh and told him I wouldn't know because I just take them all (about 4 or 5 different varieties, from memory). What with those and the anti-constipation tablets, antibiotics and various other things I think I was up to 11 tablets at one point.

On reflection, things certainly became much easier once I'd moved completely over to PEG feeding. I found that trying to maintain oral feeding was putting too much pressure on me. The calories were far easier through the tube than via the mouth. I didn't swallow any food or liquid for at least 2 or 3 weeks.

In terms of weight, pre-treatment I was 12.3 or thereabouts, the lowest I got to was 10.5 a week or two after the treatment finished. Today I am 10.8. I did worry about this but on checking the weight for height charts this is not deemed to be underweight so now I'm not so bothered. The only advice I can offer in this respect is to keep pumping in the required calories via the tube. Incidentally, I found that there was little point going over the recommended amount (which for me was 2400 cal) - I put in 3000 or 4000 for a week or so and it made no difference. As long as I put in the recommended amount things were okay.

All the best Irene and remember that the light at the end of the tunnel is getting closer and closer.

Simon xx