Hi Bacardy and Sue

I too had infected lymph nodes and was not given chemo before the op because they thought the margins were clear, I was given chemo after the op but had serious reactions to it, so I stopped. I was willing to give the chemo a go but I was told by the oncologist that it would only improve my chances by around 6%. At the time I did a lot of research and I could find no strong evidence that adjuvant therapy reduced reoccurrence. I have to be honest I doubt I would ever put myself through chemo again if I had secondary’s, anyhow I am still here 2.5 years later infected nodes or not and feel I have been given the best chance possible to fight this demon. I guess we have to use the hand we are dealt in life, our decisions must be based on informed ones and then you live by them I certainly have no regrets whatsoever and would not  change any of my decisions. The means to fight this illness is not in my opinion a precise one becuase if it were everyone would have a similar outcome, which we all know is not the case.

Hang in there, don't lose sight of hope just cherish what you have now because worry will take away the cherished things in life without you even noticing it.

Steve x

Hi again Steve

Have a real problem signing in to reply to messages, hence my pending 'friendship request' as it would be easier!

Anyway, totally agree with Crystal that for your own peace of mind you should make contact with your team and ask for the results, even though it certainly sounds like good news is coming.  They should understand the anxiety involved when awaiting results.

Great news about the council.

Interesting you didn't have the chemo after the op.  It seems that the chemo Dieter was given the first two times did nothing for him but the last lot made the tumours disappear.  As you said, it isn't a precise science as all are different.  They have definitely refined the giving of the chemo in the last few years and have ways of making it much more tolerable than before, and ensuring the patient is fit to have it too.

You are also so right about cherishing the moment as all any of us   have for certain is the right now.

Fingers and toes and a big hug

Sue x

Hi Bacardi

Given the heavy sedation your hubby’s had, I imagine there will be some withdrawal symptoms for a time, which would include hallucinations.  Is he functioning without any sedation or other meds now, except maybe painkillers?  At any rate, he seems to be making good headway now and if his nutrition can be upped to include soup and ice cream, then I would definitely say he’s turned a corner and is on the mend.

With regards to the adjuvant chemo, it’s generally normal procedure where there is lymph node involvement and almost all doctors recommend it.  It would usually be given a couple of months after surgery, allowing for some healing to take place first.  However, as Steve says, it can be a tough one as the body is much less resilient after this surgery so the patient sometimes is unable to complete the regime.  It doesn’t affect everyone in this way and many do actually sail through.  Your husband’s doctors will assess and monitor the situation carefully.  As both Steve and Sue have observed, this is not a precise science, but it is forever being improved and refined.

I just want to say at this point Bacardi that I’ve admired the way in which you’ve handled all of this.  It must have been terrifying and bewildering for you at times, but you’ve fought just as tenaciously in your way as your husband, so full marks for your remarkable spirit. xx

As for me, I can never quite look at Donald Duck in the same light anymore.  He’s such an intelligent and interesting duck and nobody seems to realise.  Anyway, yep, I’m back to normal thanks, well, my new normal at any rate.

Sending you both positive vibes

Crystal xx  - new normal -

Hi to Steve and to Sue and to anyone else looking in.  Also thinking of you Maisiebird. xx

hi crystal remember me? been off air for a while. next month with be a year since my ops. back at work for 2 days a wk loveing it. had to wks in spain which was lovely also a wk in germany. put half a stone on which is great 8st now. to date i have had 11 streatches hopefully no more. been doing a lot of reading to catch up on here. so many new faces. had a good laugh about donald duck. my hallucinations were shocking. when my hubby and son and 4 nurses were with me a doc was walking passed the end of bed when i pointed at him and told everyone we had sex the nite before his face was priceless. everyone laughed so much they nearly got thrown out. good to see you are still on here doing a great job. you gave me great comfort when i joined. at the moment i do have a cold taken it easy. big hug hun. xxxxx

Hi Sharon

Of course I remember you and it’s great to see you’re doing well now.  That year has flown hasn’t it, although you may think otherwise, as the first year of recovery can be tough.  Eleven stretches must be a record, you poor thing, and I really hope that you don’t have to have any more.  What’s the doctor’s explanation about this?

Rofl at your hallucinations.  That poor doctor must have been so embarrassed, but maybe he just couldn’t remember the night before, so you’d got him worried Lol.  I bet his face was a picture.

Sharon's doctor -

I hope your cold gets better very soon, some people swear by Echinacea as a deterrent.  Come back again whenever you want and big hugs back to you.

Ha ha Sharon your hallucination made me laugh!!!  Hope your cold is getting better.  Im just trying the echinecea(?) stuff today as feeling like Im coming down with something!

Hub progressing really well. He FINALLY moved to a ward last night - 24 days in ICU!  Hes started to eat a litlte but they are putting on his food drip overnight which is reassuring,  Hes walking much better on his own now and doing well but is very tired.  We turned up for visiting this afternoon, had about half a dozen words out of him and the rest of the time he slept!  Wasnt a problem, just pleased to seem him getting some rest as he struggled to sleep on ICU.  He had eaten fish pie and rice pud for his lunch and seemed to have gone down well.  We are hopeful that it wont be long before he is home which is just amazing when we think how bleak things looked a couple of weeks ago!

Sending big hugs to everyone.  Hope you are all having a good weekend xx

Hi

Great news Bacardi ! really pleased he is now making good progress - been an awful time, for you all  things will now start to improve hopefully.  I know once my dad was home he made good progress, he had his feed tube  in his tummy for about 3-4 months after the operation just in case it was needed.  His eating improved slowly over the 1st few months and then he started putting weight on which is always great to see !.  Stay always positive

Janet

Hi Bacardiwoman

It seems he’s progressing well now, so it won’t be long before you have him home. The tiredness/fatigue is usual after such major surgery and could continue for many months.  I slept constantly for the first six months, being awake just long enough to go outside for a short walk each day and to eat a few small 5 min snacks.  When you look back over the last few weeks, he’s come a long way and made really good progress considering his dire complications, so it’s all looking good.

Take good care.

Love and Hugs

Crystal xx

Hi Janet

You haven’t posted for some time, or I’ve missed it if you did. How are things with your dad and what's the situation now?  I hope today is a good day for all of you.

Love and Hugs

Crystal xx

Hi Crystal

No not posted for a while, but been on most days keeping up with how everyone is !.
As you were probably already aware, dad had a hernia in his new oesophagus so the original surgeon from August 2009 planned to perform surgery to fix the hernia.  Part of dads pre op was a camera down again to exactly locate where the hernia was ......... the camera would not go down !! .  CT san and pet scan later its become apparent that the oesophaeal cancer has returned along the join from the old operation, its was a tumour that was stopping the camera going down. But worse still its spread to his lungs and spine.  We are all devastated again,  its only been 14 months since his operation and the recovery has been a long haul.  Its so unfair, but dad being dad is bang up for a fight again, he is waiting for an oncology appointment, where he should be offered chemo to keep it at bay. He is a fighter and has put on almost half a stone is the last few weeks ready for round one with this evil thing.  He was plastering ceilings at the weekend, so he is definately up for a fight !!!

it is devastating, numbing, painful but the only way to get through this is to stay positive ...... as his grandson says ' Well our gandad beat it once so he can easily do it again mum, dont worry he used to be a pirate !!'  dad showed him his scars from the last operation and told him it happened when he was a pirate !!

just wish I could post a different update

Janet x