Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Surgery & Recovery Issues...

crystalclear
Posted by

For anyone facing surgery you might like to pop in here and voice your concerns, regarding the surgery and susequent recovery.  For those who've had surgery or have knowledge of it, I hope you'll be able to help and support those that come here with their questions.  I'll also do my best to be available when I can and to pick up on the discussions going on.

SSaunders
Posted by

First off - thanks to Crystal for setting this up for us.  For those who do not know me - I am a caregiver to my husband.  His esophagectomy was Aug 27th and he has been home now for almost 2 weeks.  I would like to know if any of you post-op friends could share what your first few weeks at home were like.  My hubby is doing 'OK' but I have nothing to compare that to.  His eating is very light, I am certain he is loosing more weight.   His sleeping is much better.  Takes pain killers every 4 hours on the mark.  Does this sound about right?  Would love to hear about your experiences upon your arrival back home. Thanks to all - Sherry

ivan the terrified
Posted by

Hi Sherry,

I had my op. on13/5/09 and came home on 31/05/09. My first few weeks were pretty tough going and like your hubby I was not eating very much. I  was eating more than I felt comfortable with. I also had a feeding pump home with me. Four weeks after my op. I had to go for a post op. check-up with the consultant who removed the feeding peg. At that time I caught a bug in the hospital and was sick for a week during which I lost another 4 lbs. I had to call the Gp out who gave me anti-sickness tabs. I have tried to maintain my present wt.,which is one stone lighter than before my op.  (I was just 11stone pre. op.)

My sleeping pattern is erratic but I think the worst problem is tiredness. If I do anything in the least bit strenuous I feel exhausted afterwards. I have a sleep every afternoon. Both my Gp and my consultant have told me that it will be a year before I put on any wt. or I begin to feel "like myself"again.

I have found that people on this site have been wonderful, and when I have a problem I just ask and usually find that I am worrying needlessly.

It's good to hear from you Sherry and please keep in touch

Ivan 

PS  I hope this ends up on the site somewhere as I'm still partially lost Lol

 

 


 

 


 


SSaunders
Posted by

Well Guess What Ivan?!!  You ended up on the site afterall!  I know how you feel, navigating around is a bit awkward.  Thanks for your note.  Being that I am from Canada I have difficulty with some terminology - how many pounds are a 'stone'?  We don't use that term here.  Is it 17 lbs?  When my husband was discharged the feeding tube was still in his abdomen.  We have not used it for feeding since we've been home.  We see the surgeon on the 29th so it will be interesting to see if it gets removed at that time.  We are logging everything he eats so when we see the surgeon we can show him our 'report card'.  Thanks again, take care and we will navigate through this new site together.  Cheers,

Sherry

leisha
Posted by

Hi Ivan and Sherry, sounds like you are coping well post op ( I know you are a carer Sherry like myself) but its normal to still loose weight after op. The body has had a big shock and is still coming to terms with it. The main thing is to be eating and the bowels normal and slowly but surely the body accepts the new situation and weight creeps on, that is lovely when it happens but it takes time. Persevere, thinking of you, leisha

leisha
Posted by

Ooops, forgot, 14 pounds to the stone and i dont know why we use pounds and stones when the hospital use kilograms. Guess its just us stubborn OLD English folk that wont change,lol, love again leisha

SSaunders
Posted by

Dear Leisha - How lovely to hear from you and thanks so much for your encouragement.  When one goes through this you have nothing to compare it to so it is so hard to know what is 'normal'.  Look forward to hearing from you again - kind regards, Sherry

midnightangler
Posted by

 

Hi Sherry

I came home at the end of June after twelve weeks in hospital. Still had my feeding peg and chest drain and needed to take PR pain killers. My weight loss had stabilised (pre op 15st 6lb left hospital at 12st 6lb. Can't work in kilos) Went back to hospital for a few days two weeks later and had chest drain removed. Then was allowed to start eating. Weight then started to increase and now up to 15st 11lb.

Eating is now fine and now no longer need pain relief. Like Ivan the worst problem is tiredness. If I do anything in the least bit strenuous I'm exhausted afterwards. I have to sleep every afternoon as well as for 11 hours of a night. This was worying me. I had thought I would be back at work by now. It was only when I phoned someone who was in hospital at the same time as me and found he had the same problem I realised this was normal for most of us.

 

David (midnightangler)

 

 

crystalclear
Posted by

Hi All

This is an interesting discussion Sherry as it’s always helpful to compare notes, because so often we worry whether a particular symptom or side effect is normal.  David, you seem to be doing fantastically well given that you only had the surgery in June, so it’s very early days in your recovery yet.  What procedure did you have and what caused  you to be in hospital for 12 weeks?

The common thread is the extreme tiredness and I remember that I slept far more than I was ever awake.  Other side effects were sudden  stomach cramps, sickness and diarrhoea and the dreaded Dumping Syndrome.  Has anyone else experienced this yet?  I still have it unfortunately, but generally I can work around it.  I also have to have injections of vitamin B12 every 12 weeks, as my body can no longer assimilate this vitamin.  Your doctors will be watching out for this on the three monthly follow-ups.

Listening to others, I’ve found, that depending upon the type of surgical procedure you had, the recovery varies in its length of time and in the severity of the side effects.  Some people recover amazingly quickly when they’ve had the laparascopic procedure, but for those who’ve had the radical Ivor Lewis, recovery can take much longer I’m afraid.  My consultant told me it would take between 6 months to eighteen months to get reasonably fit.  Two years on I still have to sleep a great deal.  If you are having a difficult recovery, everyone will testify that it does get easier in time and you will return to doing the activities you did before. 

How is everyone finding their new dietary requirements and does it cause any problems or further side effects?  Sherry, you mentioned that you thought your husband was losing more weight.  This is normal for a time, as it’s almost impossible to eat enough initially to gain weight.  He will though in time.  More on diet later. 

Have a good day everyone.

Crystal xx

 

midnightangler
Posted by

 

Hi Crystal and all

I had an Ivor Lewis on the 31st March. Five days after the op started to fill unwell , I had an anatomical leek and ended up back in surgery followed by a week in intensive care. It was then decided I still had a leek and once again back to the theater this time a stent was put in. Then spent a few days in intensive care and a week in high dependency. I was then taken back to the ward, but then developed an infection. Had lots of antibiotics one of I had a bad reaction too. Eventually was taken off the antibiotics. Stared to recover and was soon walking around and having tubes removed. After two months I was strong enough to care for myself, but still nil by mouth and with a chest drain. I still had a leek that would not heal and after a few weeks it was decided to remove the stent and see what could be done to help the leek to heal. When the stent was removed the surgeon discovered that the chest drain tube was in the hole in my esophagus stopping the hole from healing. Within a few days the fluid output in my drain was minimal and I was allowed fluids. I was then allowed home home. Thats why I was was in hospital for so long.

 

My surgeon then used to phone everyday and after a week said I could try ice cream and a week later was then able to eat properly. Eventually had my chest drain and feeding tube removed.  Started to get stronger everyday day, but still have some pain from the muscles in my shoulder and chest.

But as I was saying the worse is the tiredness and exhaustion.  Was told I should be fine after a few months.  But now know from you guys it will be a lot longer.  Even my GP does not seem to be aware of this as hes been doing blood test this week to find out why I'm so weak.  Also getting pressure from work to return ASAP, does not help that I look fit and healthy having lost excess weight and gained a suntan from lazing in the garden whenever the sun is out!

Eating wise I'm doing well and even eating things I used to avoid before the op.  Did take a while to adjust to eating smaller meals.  Can now manage an occasional pint too.  Strange thing is though I can no longer tolerate coffee, used to love my coffee too.

David

midnightangler
Posted by

Just thought I should add that i was unlucky with my op.  Most of those having this op are out in under two weeks.  Don't want to cause any unnecessary worrying for anyone about to have surgery.  Also my stay in hospital was almost pleasant, made lots of Friends and was spoilt by the nurses and doctors!

David

SSaunders
Posted by

Hello to David, Crystal and all - David - you really had a go at it didn't you?  I guess Brian's stay (my hubby) in hospital of 18 days was not so bad in comparison!  Our surgeon told us that on average the recovery was 3 months.  What he means by recovery is anyone's guess but I would imagine it would mean being off pain killers, no continuing pain from incisions and chest tube sites, etc.  The eating and gaining of weight will take longer as I have learned from all of you.  We have a post op appt with the surgeon next Tuesday so we will learn more at that time.  Just love having all of you to compare notes with. Have a lovely day and stay in touch!  ((Hugs!)) Sherry

'Bad Year' is now a 'Good Year'

Hi All

Having read some of the problems you are all experiencing I can certainly empathize with you, I am 18 months post op and have had most of these problems, (except leakage) at various stages, but don’t despair as they are all normal reactions, this operation gives the body a real kicking and it has every right to protest most strongly. There is no manual you just have to write your own by trying different ways to approach things such as eating, I lost around 6 stone in all, but hey I needed to, I was lucky I had it to lose in the first instance! Don’t be afraid to push yourselves a little provided you aren’t too silly about it, you will be surprised how much you can achieve and is a good measure on how you are progressing; it does not matter if you have to take a step back every now and again to consolidate your efforts as it is normal to hit a plateau and sometimes fall back down again before starting to rise, frustrating yes, but totally unavoidable.

Remember no two people are the same, but we all share certain characteristics that can be overcome, but it takes determination and essentially time which we must all give ourselves in order to make any sort of long term recovery.

I hope this day is being kind to you and the caring ones, who help shoulder your burden.

Steve

 

leisha
Posted by

Hi everyone, steves post puy me in mind of a song ( we are country and western fans) but I changed the words a bit, " 2 steps forward and 1 step back" , I think it describes our journey well. Little, even big, setbacks are normall and whereas I took them badly at first it has become easier through talking on here and realising this is common. It helps my sheer panic, I have come to realise setbacks can be temporary and to soldier on. So I hope everyone is on a good day but, if not, I hope things pickup quickly for you. love leisha

crystalclear
Posted by

Hi All

You’re right Leisha, it is like that. Two steps forward and one back.  As I love dancing so much I always saw the recovery as a dance in my mind and I actually gave it a physical appearance and danced with it.  Yes well, apart from that Lol.  (Actually, visualisation played a big part in my own recovery).  Anyway, I always tell people that the real recovery begins at home because that’s where all the hard work comes in.  When I left hospital I absolutely refused the feed tube and insisted they remove it before I went home.  Eventually they did, after my having to show them that I could eat a slice of toast.  So from day one, the control of my diet and weight gain was in my own hands.  However, I wouldn’t suggest or advise that to anyone, as that for me was just the sheer hatred of that feeding tube and the helplessness of dependency upon it.  Most docs wouldn’t have removed it either. 

David, you certainly did have some of the worst complications, especially with the leakage.  It’s a good job the doctors removed the stent and found the underlying cause.  Also, it seems to be a peculiarity of the surgery that subsequently the foods we enjoyed before, we now dislike and those that we really disliked are now enjoyable.  Nobody seems to know why this is, but you picked up and that straight away.  As for your place of work, well I can understand that it might be a worry to you, but there is no way that you could do any kind of work when you’re physically and emotionally very fatigued and weak.  It will be a few months yet before you begin to feel strong.  As Steve says, don’t be afraid to push yourself a little, but setbacks are a fundamental part of this recovery and that is why it take a long time.  

Sherry, how did the post op appointment with the surgeon go?  I agree with you Sherry, it’s good to exchange info as that is how we move forward.  Have a good day everyone.