Surviving Oesophageal Cancer

Hi Mick

You’re looking good mate; drop in a little more often as it’s always good to hear from you.

Regards,

Steve

Hi Mick

My goodness !  You are sleek and slender, what a difference from a few months back.  Hahaha, that sounds as though you were just the opposite, which is not quite true. 

Well done to you for losing that weight.  What about the beer though?!!  And your tache!  You’re not the hairy biker now are you?

I too had to diet for a time and lost two stone, which is slowly creeping back on thanks to my daily triple helpings of ice cream and maybe the odd packet of chocolate biscuits…and then there’s the cake…

Anyway, as Steve says, you should drop by more often as it’s good to hear from you.

Crystal xx

Hi Folks, Im new on here but have sat over the last couple of days and read through all your posts whilst both laughing and crying.  You are all so brave and inspirational :-)

My husband was diagnosed with Stage 3 in April and has had the three chemos sessions,  We were told it was borderline operable as lymph nodes were affected.  After the second session of chemo he has been able to eat and so apart from the tiredness has done really well and continued to work.  Hes also managed to put back on weight that he lost when his food was unable to get down so we were very hopeful.  After the CT scan they indicated that there was little change which surprised us but after a meeting they decided to operate but do more chemo after the op.  We were literally given a leaflet, told it was a major operation and where the tubes woud be and that was it.  We have a pre op booked the week after next and his op is first week in October but so many of you seem to have been sent away 'to prepare' etc yet nothing has been mentioned.  We have both been extremely upbeat about the whole thing but suddenly I am in panic mode and quite tearful hence joining this site.  Hubby is typical man and doesnt do talking about it so not sure if he realises the full implications of this operation and until I read this thread I didnt either!  Hence I am not letting him see that I am tearful nor that I have joined this site :-(  There seem to be so many survivors out there so that I cling to your stories.  Wishing you all the best x

Hi Bacardiwoman

Welcome to the forum, although naturally I’m sorry for the reason you’re here. However, you’ll find quite a few of us, both patients and carers, who have lots of unwanted experience about this type of cancer, so you’re in the right place to find the info and support you need.  You might also want to join the Gullet oesophageal Group, if you haven’t already done so.

First of all, the very good news for your husband is that he’s been offered surgery, because as you say, and as you’ve probably already read on this thread, when lymph nodes are affected, then surgery usually isn’t offered, therefore, many people consider themselves very fortunate to be in the position of having surgery.

Although the CT scan hasn’t shown any improvement, it seems that the tumour could have reduced in size as your husband is now able to swallow.  The same thing happened with me, where just before surgery I was able to swallow for the first time in months.  I would think that the pre op you refer to is either a laparoscopy, which is a small surgical procedure where they insert a camera into the body cavity, or you may mean the pre op tests, which are heart monitoring tests and lung function tests etc.

The doctors don’t really provide much info on how to prepare for such surgery, but my advice would be to do light, aerobic exercise such as walking or swimming, to surround yourselves with good and positive people and to keep an active and positive mind.  From what you say, you seem to be upbeat anyway, so this will guide you well throughout this journey.

It is major surgery, lasting around 8 hours depending upon the type of procedure, as there are several different ways of performing this op.  However, the surgeons that undertake an oesophagectomy are at the top of their field, so your husband will be in expert hands.  May I ask which hospital is treating your husband?  Recovery can take quite a long time, anything from 6 months up to 18 months, or longer in some cases.

I know that what you’ve been through to this point has been horrendous, but hopefully things will get back on an even keel and your husband will reach what we call here, the new normal.

Any time you need advice, or just an ear or shoulder, somebody will be able to help.

All the very best

Crystal xx

Thanks Crystal.  Hes being treated at Derby.  Hes already had the laproscopy before he started chemo and because of previous heart problems had to have an echocardiagram after each session to check his heart was coping ok.  Think the pre op will just be a basic check and chat as it only says to allow an hour for this.  Sure we will get through this and I will soon pick myself up again!  It doesnt help that my elderly mum is also awaiting major open heart surgery and she too has been in hospital this week!!

My goodness Bacardi, it’s no wonder you feel slightly tearful, anybody would by having to face such serious surgery for two people you love.  At the time of my surgery my stepfather, who I was very close to, was diagnosed with inoperable bowel cancer and died four months after my surgery, so I can understand how torn you must be feeling.  I do hope your mum will do well and I hope that you have plenty of good and willing hands there to help you.  Somehow, and I never know how we do it, but we do cope and get through these things somehow.  The people in our group, and on the Mac site in general, are amazing and inspirational people, and it’s from their experiences that we can draw the strength and comfort we need.  I hope you can find that here too.

Crystal xx

Hi  Bacardiwoman

It does sound like he will be in safe hands. The preop tests are if I remember from last March, the echo test as Crystal said and a lung function which was quite hard if I remember - lots of blowing into tubes and breath holding (exhausting) oh and a blood test. 

I did have  along chat with the upper GI nurse 48 hours before the op and she told me about what would happen afterwards and eating etc etc which was helpful. If you feel you want to know more your upper GI nurse specialist will I am sure talk to you about anything.

I had my op right at the end of March and am now doing some voluntary work at my old school, going to the gym, and living as near a normal life as can be imagined! From the outside I look well and you would think nothing had happened. (In fact I look better as I am a bit slimmer!)

Take it one step at a time, all will be well. 

Good luck to you both.

Charlotte

X

Thanks folks!  You are both very inspirational and its good to know their is a 'normal' life after the op!!!  Think its just the realisation of how big an op it is that sent me into a state plus hubby being unwilling to discuss anything about it!  But think hes the type to go into his cave and deal with it alone whilst I like to read up, discuss etc!  Back to positive thinking and one step at a time.  This site is a great discovery for me to read that other folk are going through the same emotions/problems as we are

x

Hi Bacardi

Glad to be of help.  I’m sure you’re finding quite a few positive and successful experiences on this site and I know how important and reassuring it is to have info and support available. 

Below is a link to a list of useful information and services pertinent to, and located around the Derby area:

http://www.derbyhospitals.nhs.uk/publications/category.php?cat=32

There is also a local Support Group:

Derby / Burton Oesophageal Patients' Association
Secretary Chris Spiller Telephone 01332 513807 (every day 9am - 5pm)

Derby Cancer Self Help Group
c/o Macmillan Information Centre
Level 1 Main Hospital 
Royal Derby Hospital
Derby
Contact Lisa Freeman 01332 340131 Ext 86008

Hello, not posted for a while although do pop in every few weeks,  devastating news has brought me back !  13 months after dads Ivor Lewis operation and 9 stretches later that dammed cancer has returned in the lining of his oesophagus, even though there was no lymph node involvment before or after the operation.  I am devastated all over again,  off to see his original surgeon on Monday afternoon to get all the details and also what options if any are available,  it just seems so unfair after all he has been through during the last 13 months that it should come back so quickly, he has not even had time to recover properly form the operation.  Think this set back has hit dad really hard and its almost impossible to keep it together.  As before we are not ready to loose our dad or grandad   and my mum needs him.  We had progressed to looking ahead but now its one day at a time again, it hurts so much.

Hope everyone else is ok

Janet xx