Surviving Oesophageal Cancer

Hi Good Year
What an absolute shame that your flying career was curtailed due to the car crash, but how you rose like a phoenix to begin again with a different venture. I must say that landing on the Cape Canavaral strip must have been a fantastic experience and flying over the Grand Canyon, I imagine to be breathtaking. The Grand Canyon was / is on my must visit list, so ….one day, who knows. Also, brilliant of your wife to accompany you on your first flight on a windy day. I love that kind of spirit, and how brave she was! (just joking – not Lol).
The nearest I’ve got to flying was in miltary simulators, the Vulacan bomber, Tornado, Nimrod and AWACS at their respective RAF stations. I especially enjoyed the Vulcan and when I was given control, was able to take off, do a couple of circuits and land it on my own, (because I was fortunate enough to be able to visit it many times). Probably now I wouldn’t be medically fit enough to take flyng lessons, and as you say, the expense is prohibitive as a hobby, so I’ll have to think up something else to do for my 60 birthday. Sometimes, I think we forget our new health limitations don’t we? Well I do at any rate. xx

Hi Ben
What a fabulous experience to land 10,000 feet up on Mount Cook and set foot in pristine snow where nobody has been and just to listen to the silence. That to me sounds like paradise. I don’t know about you but I find noise particularly bothersome since my surgery and often find the need to escape into silence where there are very few people and absolutely no everyday noise. Not that I’m anti social however, but the world seems very noisy all the time. Anyway, maybe you can get to go flying again on a pleasure flight, and there is still the bungee jumping to look forward to! xx

Hi Leisha
It sounds like you’ve had some exciting experiences yourself and I’d love to hear more about the tall ships (sail like swans asleep…), that you mentioned. Was this in a racing capacity or for pleasure? Maybe one day, when your son isn’t doing his low-flying stunts over the golf courses, you’ll let him take you up in his helicopter, as I think to get some photos from that would be an exciting things to do.
You are a bit of a late developer as well, getting your degree in your 40s Lol, so well done to you too. I too love to do courses so you and I have much in common. Languages are ok, I did a German GCSE. It’s just a matter of grammer and memory really, but now ever since the chemo I find my attention span and memory completely pathetic Lol.
I’m glad to hear that Ed has decided to see the doctor before you go away, as hopefully the doctor will say that everything is fine and then you’ll have peace of mind to enjoy your trip, but you didn’t mention where you were going? What exactly is the problem with his eating? If it’s just a case of not being able to eat enough, then that is pretty normal but improves over time. There are many days for lots of us post oesophagectomy, where it’s just plain difficult to eat as appetite vanishes sometimes for no apparent reason, things never taste as they once did, or it causes dumping syndrome or stomach aches and upsets etc. Anyway, please let us know how Ed gets on at the doctors.
I hope your rescue dog brings you many happy years of fun and companionship. What is her name?
Take care Leisha, and I hope that you are recovering well from your surgery. xx

Hi to everyone looking in, hope your evening is pleasant.
Love Crystal xx

Hi Crystal
Flying those aircraft in the simulator leads me to believe you were a RAF girl, good on you, I wouldn’t mind having a go at that Vulcan Bomber. I did not land at Cape Canaveral, was only authorised to fly along the runway at 500ft, sill post 9/11 I don’t think they would even allow that now. When I have been on the south coast and seen those motor Para gliders high above the coastline it really stirs me to give it a go, you can get 500ft min climb and take off from almost anywhere, I did hear some crazy guys flew over Mount Everest in specially adapted ones.

Hi Leisha
Yes those tall ships sound good fun, sill I think you should go up in that helicopter with your son even if only the once, it will be something you will both remember, I would like to have taken my mum with up with me but she was living in Australia and has now since passed away. My Father-In-Law used to come with me any chance he could get, but he was fearless and a bit crazy like me.

Hi Leisha
We’ve had various debates on this thread over the months regarding dumping syndrome, as some of us still suffer from it. In fact, I still have it periodically two years on, but I know some of that is my own fault, and when I do get it it’s really bad with severe sweating, nausea, palpitations and total drain of energy. The best way to avoid it is to eat smaller meals, avoid sweet things and I do find personally that spiced food unfortunately brings about the dumping. You might want to take a look at this link called Dumping Syndrome Diet, which suggests foods to eat and those to avoid.
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

I’m glad though that your efforts to get Ed to the doctor paid off, although I don’t see the relevance of having indigestion tablets for dumping syndrome. The lactulose is a laxative so if Ed is constipated that’s fine, but I’m a bit puzzled because dumping usually causes cramping followed by diarrhoea. If you are really concerned about Ed’s loss of weight and the pain he has, then perhaps you could contact your upper GI nurse or Mac nurse? Mine is still available to me any time I have any concerns, all I have to do is give her a call.
Another thought is, has Ed had his vitamin B12checked out? A few of us now have to have B12 injections every 12 weeks as the body can no longer assimilate this essential vitamin. Might be worth getting that checked out although I’m sure the docs are monitoring that with the blood tests.
Hope this helps.Take care. xx

Hi Good Year
No, I wasn’t an RAF girl but my husband at that time was an RAF pilot so that’s why I got to fly the simulators. Hope you’re well, when is your consultant’s appointment due, I think you said later this month didn’t you? xx

Hi Ben
Hope all is well with you too and you’re going out to lots of lovely places. Let us know how you are. xx

Hi to everyone looking in. Hope your evening is a good one.
Love Crystal xx

Hi Leisha
Just for peace of mind why not call the specialist nurse (GI or Mac?) and voice your concerns? Hopefully, once you’ve described the symptoms she will either be able to reassure you that it’s dumping or suggest a course of action until Ed next visits his consultant. As you say, it’s a white knuckle ride and reminds me of one at Alton Towers where I ended up battered, bruised and sick Lol. Strangely, the year before diagnosis I began to wonder about some of the things I always wanted to do but didn’t get round to, and one of these silly things was to go on every ride at Alton Towers. So at the age of 53 that is what I did Lol.
Also, I love your name. My favourite aunt was called Alicia but we always called her Leisha.
I’m ok thanks, just need a good dollop of energy now and then. Hope all is well with you and Ed. xx

Hi to Ben and Steve, hope all is ok?
and everyone looking in, have a good evening.
Love crystal xx

Hi Leisha,

I'm 8mths out from my ivor lewis encounter and looking back in my diary I am 1000% better in eating and digesting than during those first three months at home. But it wasn't until I looked back that I realised how much things have improved!! It is amazing how quickly we forget.
I got my daughter to take photos of me when I came out of surgery and in ICU so I can look back on it when I think i'm not doing so well. I have only looked at them a couple of times and it is hard to comprehend how quickly the body can recover .

I am an impatient sod and keeping a diary of events is the best thing I could have done as it enables me to measure progress far more accurately than relying on memory. I still get dumping and there seems no rhyme nor reason but one thing I can concur with is eating little and often. Only in the last 6 weeks has my appetite returned to almost normal and I drive Sharon mad with all the sweet treats loaded in the fridge which often end up only being partially eaten by the use by date. Weight is less than it was 3mths ago (when I was dumping and vomiting regularly) but I am able to eat slightly bigger meals, weight is stable and I am enjoying my food.
So tell Ed to hang in there - it does get better.

Hi Crystal,
As you can see all is well down under - Spring is here (almost) and with Spring comes love! -- Looking forward to that.
Went to have my port flushed on monday and there were only three others in the ward and I couldn't believe the sad and sour looks on their faces - yes I know we all handle things in different ways but it was all I could do to hold back blurting out my favourite saying (and you have heard me on this before) "pain is inevitable -- misery is optional. There are so many people worse off than us. It is just great to be here and see the sunrise in the morning and even better when you are still here to see it set in the evening.
Enough wofffling. It's time to make hay again.
Cheers Ben.