why "fortunatus"

[fortunatus]

I chose this title  (whether it's good Latin or not) because I felt incredibly lucky to have survived (so far) the ordeal of oesophageal cancer. I also thought joining this site would allow me the occasional opportunity to offer advice and observations deriving from my own experience of the continuing management of the drastic surgery we have undergone, especially for those of us of more advanced years (I am nearly 75 and had the operation when I was 71) that might be sustaining and useful to others who were going through difficult times. And of course the site gives me access to much that is helpful to me as well, of course, to the occasional post that falls short of that standard.

[Wodie1]

Many thanks - you have helped me as I face the surgery on Tuesday next. Very best wishes. 

[Mikey2711 in reply to Wodie1]

Noticed your post, I had my oesophagectomy, 2 years ago. Pain was no problem, well managed with drugs. and I was out of bed after 3 days and out of hospital a further 7 days later. Lost a few stones (i needed to ...!) and had all the usual side effects (dumping etc.) along with some eating problems. Well looked after before and after the op. Now enjoying life a great deal with my family especially my lovely grandchildren,  and back pursuing my passion of opera singing. The big step is the op, after that it is gradual improvement day by day. My main advice would be..listen to your medical team, they are the experts. Please feel free to contact me by email should you wish to talk, or just need some reassurance. Take care best wishes to you and yours, I will be thinking of you on Tuesday. 

Mike

([e-mail])

[Wodie1 in reply to Mikey2711]

Many thanks Mike - this is most reassuring for me at a time when I am feeling a bit anxious. I'm delighted to hear about your recovery going so well. Keep it up! I will take your advice and listen to the experts. Thanks for your email address and I will send an email. Very best wishes, John

[Mikey2711 in reply to Wodie1]

You are welcome, 

Take Care

Mike

[rachelthomas in reply to Wodie1]

Goog luck!  My husband has surgery @Wrexham Maelor hospital the following Tuesday 3rd May. Will be thinking of you.

[Wodie1 in reply to rachelthomas]

Thank you - much appreciated. Best wishes to you and your husband for hos operation on 3rd May. I will be thinking about you both.

[Mazken in reply to Wodie1]

Wishing you well 

[Wodie1 in reply to Mazken]

Thanks you - much appreciated

[lonestray]

@fortunatus,  I've had a Total Gastgectomy at the age of 79 and am five years and eight months post operation and will be 85 in early October. Over the years I've had little or no support and managed all the problems that result from such an operation on my own. I've just received an appointment to attend hospital seventeen months after my last one. Wonder why that should be?

[tallbear in reply to lonestray]

Hello there, I am seven months post Ivor Lewis and sixty nine years old.

I have always felt that the actual surgery was superb and the hospital after care equally so, but I can't help but agree with you in relation to the after you leave hospital care 'package'.

Everyone in the surgical team is really helpful, but when I had the dreaded diarrhoea for months on end and lost three stone in weight they seemed perplexed, as though it was unusual and it was only when I came onto this site I realised it happens to so many of us and is commonly a result of SIBO.

When I had lost so much weight and looked like a victim of malnutrition one of the specialists asked me what I had hoped to achieve from my visit to hospital today. It took quite a fair amount of self control not to swear at him.

Now, after first being told not to take Imodium and then it changing to do take Imodium eight tablets a day, I have found that if I don't take the tablets the diarrhoea returns immediately. So it's not a cure it's a stop gap.

I have never been a heavy person and I couldn't really afford to lose three stone, but I have had to learn to live with my new malnutrition weight because no matter what I eat it makes no difference and the hospital staff almost act as though it's normal!

As I said before, clever surgery and superbly well done but they don't have half of the answers for the long term recovery or sites like this wouldn't exist, and we wouldn't be hearing from people years post op saying they still have problems. And yes I know at least we are all still alive, but quality of life is so diminished for many of us. Eat something this week it's OK, eat it next week it gives you dumping syndrome or hypoglycemic attacks or insulin rush palpitations! And as you so rightly say it's for us to sort out what works for each of us. Unfortunately this means our lives revolve around what we can and can't eat or drink and social eating is impossible.

My cynical opinion is that the reason you have waited so long for follow up is age related.

But good luck anyway and keep your chin up, we are quite a resilient species after all even if we do like the odd grumble.

[lonestray in reply to tallbear]

tallbear, Like you I tend to be of the cynical belief that there comes an age when you tend to feel one's pass the 'sell by date'.

The first indications I had a problem was while I was caring for my late wife who had Alzheimer's. My GP diagnosed Irritable Bowel Syndrome. As I chose to care 24/7 year on year at home till her passing I accepted the diagnosis and struggled through the years.

When she passed away I insisted on a second opinion it was then established I had stomach cancer. I questioned the surgeon: "How come I have cancer, I don't smoke or drink and have been physically active all my life?" His reply: "How long is a piece of string?" The good news he informed me was: "I had the body of a young man". All I could say was: "He's not getting it back." I spent five weeks in hospital, almost three of them in Intensive Care. On arrival home I was on my own and left to get on with it.

Before my operation I was a lean fit ten stone as I kept up my running long after my competitive days. I'm still attempting to regain weight without success as my normal weight was 140lbs. The only treatment I receive is B12 injections 12 weekly and a daily 25 microgram tablet of levothyroxine.

Whenever I get a burning sensation  in my gut I suck a Mint Humbug sweet, it works for me.

The best of luck to you and all others on here.

[haward]

Welcome fortunatus! We have a few members with great names - gutless wonder comes to mind. I hope the site helps you and your contributions and advice will be much appreciated. It's individual experience, which is always different after the op, that helps us all get on. H

[fortunatus]

Actually my comments  were intended to be included in the survey but somehow (technological illiteracy - far too many characters!) got posted. I have in fact been a member of the site since 2013 but am pleased to have received such a "welcome" from you good people and will continue to derive strength and inspiration (and occasional useful information) from your posts. May the strength be with you/us all!

[Mazken]

Thank you for this i am  waiting to know if i can have the operation as i have C.O.PD and had A Heart attack  4 years ago and so worried about it ,but have to wait for more test  .Hope you are improving and enjoy life 

[Haighey]

Agree with you fortunatous   I was also 72 when the cancer was found and I had an Ivor Lewis now 78.   Life has not always been smooth during this journey . I have a wonderful wife who is always there when the chips are down.    Ivor Lewis sure beats pushing up daisy's  Cheers .. haighey