Hi Nicola,

Just catching up with your progress. What a time you've had! And NO, it didnt sound as if you were moaning! You've been through so much, I'm glad you're feeling a little more comfortable after your op and that the second attempt at putting the PEG in has been successful.

I can fully empathise with your pain - I've just had a total of 6 nights in hospital, over an 8 day period with severe abdominal pains. I thought it was blocked stoma, but it's possibly post surgical adhesions which have 'stuck' my bowel to my tummy, stopping it moving as it wants to when I eat! Pain on a par with childbirth!!

I had an appointment today to see the oncologist about my chemo and he reported that a recent MRI scan has shown 'something' on my liver! I'll find out on Thursday what that 'something' is! It could be an abscess caused by the chemo drugs, but it could be a secondary cancer which would need surgery!

Some days I just feel like curling up under the duvet and staying there!! But then I remember my virtual friends on here and find support and comfort from their postings.

Good luck for your radiotherapy on Monday, please let us know how it goes.

Keep smiling, lovely lady (and I will too!)

Hugs, Jo xxxx

Hi Nicola,

I hope that the radiotherapy is going smoothly and that your first chemo session was/is okay. Did you get a good dose of anti-sickness medication?

I trust that your PEG has settled down?

Now you're on the rollercoaster treatment phase - it might seem a struggle but thinking back to mine I found that time flew by.

Let us all know how things are going.

I am now 12 weeks out from the chemo/radiotherapy and I have my important meeting with the consultant in two weeks. I have just started soft food by mouth again. Remember, you are not that far behind me.

Wishing you all the very best.

Simon. 

Hi

Nicola - I am so sorry that you are having such a tough time. I don't think you are moaning at all - you have been amazingly brave. Anyway, feel free to rant - that's what we are here for! I know I didn't want to moan to my family and friends buy I had the odd rant on here! Hopefully this will soon be a distant memory.

Simon - I can't believe that 12 weeks have passed! Now you have started eating, hopefully you will soon be back to eating fairly normally.

Debbie

Hi Nicola,

I know this reply is a few days on from your last update and I am sorry for that and I am also very sorry that you seem to be getting the real run-around from the medical staff who are supposed to be looking after you.  I must admit I couldn't figure out why you didn't get the keyhole op' to release the air that was giving you such discomfort much sooner, especially as it was a procedural error that caused it in the first place.

Please don't think you were moaning as if there is one thing people can't do on here it's moan. We all need this site to vent our feelings from time to time and so all you are actually doing is off-loading them for understanding people to listen to.  We are all friends here and friends listen!

I hope you can get used to your peg sooner rather than later and then maybe you can get your recovery back on track.

Sending best wishes to you.

Garf. x 

Hi everyone,

I haven't been on here for a few days as its been my first week of treatment so a busy week, but I was again overwhelmed at everybody's lovely replies. Thank you.

So, week one is finished, I've had five sessions of radiotherapy and one chemo. The chemo was ok, made me feel a bit sick for a couple of days afterwards but nothing too bad yet. After my first radiotherapy my tongue felt slightly frazzled and my jaw is now slightly stiff and tender and feels swollen as though it's been punched! However, nothing I can't handle yet. The worst seems to be all of the waiting around at the hospital for appointments, one evening I was kept waiting for two hours!! Five weeks to go and counting!! I've met some other patients having virtually the same treatment as me and they have just finished week 3 and are now hardly able to swallow at all so I'm giving myself another week or so before I'm in that position too. I'm getting used to the PEG but I must say I don't like it. I'm having a PICC line inserted in Tuesday, not looking forward to this as it'll be another foreign instrument in my body but it should only be for a few weeks to get me through the chemo. Does anyone have any experience of a PICC line?

Simon - really pleased to hear you are progressing and can't believe it's been 12 weeks already. Well done. I can not wait to be in your position. What is your big meeting? Is it to find out if you are in remission? I was given lots of anti sickness drugs, I thought of you as the nurse was dishing them out as I remembered they had forgotten yours. I took them all as advised and they certainly helped.

Jo - I'm really sorry to hear this news. Have you had the results now or been told any further news? I really really hope it's nothing too serious, you've been through so much. Are you continuing with chemo in the meantime? I can relate to the pain you were suffering, I was told a PEG is technically pinning your stomach to your tummy which prevents it from moving freely, this was awful pain and Tramadol had to see me through for at least a week. It was awful. If you do feel like curling up under the duvet, then do it. You'll be more than entitled, but please stay strong and positive as you have been doing so far. I'm keeping my fingers crossed for you. Xx

Victoria - thank you for posting on my thread. I read your story when I was first diagnosed as yours was the closest I could find to my own at the time. I'm glad you've come back on here with your words of experience.

Debbie, Annabel & Garf - thank you for your kind words. I'm getting pretty scared now of what's to come and I feel like my life is on hold whilst I watch everyone else live theirs. I just want this horrible treatment phase over with now. I'm not sure how I will manage when I start to feel really bad, I really am dreading it.

I will keep you all updated with my treatment and as always, you are all in my thoughts each day.

Speak soon,

Nicola xx

Hi Nicola,

Just sending you some virtual hugs tonight and let you know I am thinking of you. Am off to bed and will be back to write a proper post tomorrow.

HUGS

Annabel. xx.

Hi Nicola,

Congratulations on making it through the first week of your treatment and coping so well with what is obviously some extreme discomfort and pain, some of it unneccessary.

I understand that you still have five weeks to go and you are preparing yourself to feel continually worse as the time goes by but I believe you are more than strong enough to deal with what is to come and if you sometimes feel that you don't then just come here and we will all send you some extra to help see you through.

Good luck and all the best.

Garf. x

Good morning Nicola,

Well Garf has said exactly what I wanted to say to you,(well done Garf) which is hang on in there love, we are here thinking of you and rooting for you.

The only bit of advice I can think of is try to think of it as one treatment at a time. Cope with the here and now until you've had the last treatment.

Sending lots of virtual hugs

Annabel.xx

Well done, Nicola!

Week one done and dusted. You're on the roller coaster and it's a non-stop ride through to week 6 now. Go for it girl - one stage at a time and it's all manageable. I'm pleased that you got your anti-sickness medication - that really was one of my worst ever experiences.

I think you'll find that things move pretty quickly now from your perspective. I know it's a drag sometimes, especially all the hanging around, but I promise it'll fly by.

I have an appointment on Thursday (21st) where I believe we'll be discussing the result of my first post-treatment MRI scan. The appointment was to be on the 28th but I asked the nurse to try and bring it forward by a week - I had my MRI scan on the 8th so the results should be available and I'm obviously keen to see how things are looking. I now on soft food by mouth, a mixture of macaroni cheese, yogurt and eggs. I still use the PEG to pack in a few calories as I'm trying to get some weight back on (I'm down to 10.5 whereas my normal weight is around 12 stone).

Last night I had my first beer for three months!

You are not that far behind me and soon you'll be looking back on the treatment phase and looking forward to getting back to normality. I do so admire your strength of character - well done you and I and all the others are thinking of you.

All the best

Simon