Surviving Oesophageal Cancer

Hi Crystal,

We are still here and as you figured we have been having too much fun enjoying our spring weather, although it has turned to custard today.

Had full body bone scan today and went to sleep during the 35 min body scan ! followed by shoulder only. Wont know the outcome for 5 working days although I tried pretty hard for a clue - but fair enough the guys are '"only" the operators not radiologists. Whats another week anyway.Still pretty severe shoulder pain and will wait for full scan report before further treatment. Meantime its carry on regardless with the happy pills.
Love your graphics and you make it sound so simple I am still struggling with just typing!
Time for shuteye after a long day.
Cheers Ben.

Happy Anniversary Leisha and Ed.
Here’s a romantic song for you:
Anniversary Waltz by Connie Francis
http://www.youtube.com/watch?v=QFVy8td-H-A
Here is the Number 1 UK Hit Singles in the year you got married of 1962.
http://www.wwwk.co.uk/music/hit-singles/years/1962.htm
Have a lovely day and Celebrate! xx

Hi Ben
I’m so glad that you’re well, and to be able to sleep during your scan is pretty amazing. As we all know, the waiting is the worrisome part but I’m keeping my fingers crossed that everything is fine and that the only outcome is a potential remedy for your shoulder.
I’m wondering what custard weather is? Thick, sweet, yellow and creamy.
Sending you big hugs to be going on with (((((Ben))))). xx

Hi Good Year
Hope you’re enjoying the break. Don’t work too hard and make sure you go out and have some fun. Nicu and I are out fun-seeking today. xx

More later.
Anyone looking in, I hope your day is sunny.
Love Crystal xx

Hi Wendy
You’re very welcome here and you’ll probably find that as well as having had an oesophagectomy, you’ll probably be sharing some of the recovery symptoms that we’ve all had or still have to varying degrees. All of us who post on this thread have first hand knowledge of oesophageal or gastric cancer, both as patients and carers.
Could I suggest that you fill in your profile details, as it would save us asking you lots of questions? You don’t have to of course, but it would be helpful. Anyway, you’ve come to the right place for advice and support so anything you need to ask, just post here and we’ll do our best to help.
As for meeting similar groups in your area, if you call The Oesophageal Patients Association, who run groups all over the UK, they will advise you whether there is a meeting in your area, Leeds or the nearest venue to it. http://www.opa.org.uk/
Do come back and join us as you’ll be able to tell us about your surgery and recovery issues, as well as hopefully having a chat as well.
Stay strong.
Love Crystal xx

Hi Leisha
Hope you had a wonderful anniversary. Let us know how you celebrated it. I’m glad you had a good laugh when you saw that post on the ‘A Bit of Light Relief’ thread. I’ve got other stuff I’d like to post there. Also, I often post on the Chocolate thread as well so do join in Lol. Not long to go now for hols is there and I bet you can't wait. xx

Hi Ben and Steve
Will catch up with you later, only I’ve had such a lovely day out, which I’ll tell you about another time. I’m sleeping at this keyboard almost. As soon as you hear your results Ben, come and let us know. Fingers crossed still.
Hope you’re eating better now Steve. xx

To All, a very good night and sound sleep. xx

Hi Crystal and Liesha,

Seems like everyone thinks the weather down under is everlasting summer bliss.
Well in my minds eye it is!!! But in reality we do occasionally have the odd day when its not as good as the day before. (don't you wish you had never asked?) Our "custard" weather has been forecast as snow showers down to 200mtrs - pleased that we live at sea level.Today it is 7degrees with southerly showers direct from Antartica and we have the log fire flashed up. But still managed a walk with Trixi (dogs don't give a toss about the weather)The North Island is generally a little warmer than the South - we get more sharply defined seasons with frosts in winter and hotter drier summers.Yes it was our warmest August that I can remember.

Anyway ---- you know my views on weather - I repeat again - there are no bad days, some are just better than others - if you think it is a bad, day try missing one ! It's a great day as long as I'm here to see the start of it, and even better if I'm here to see the end of it.

Take care.
Ben

Hi Richard
Welcome, and it’s great to have you join us. I never seem to forget a name and remember you coming onto this thread before, so when I did a search there you are in April. So hello again and I hope you enjoy being with us.
Reading your profile, you are very young to have had gastric cancer, but you’ve come through it tremendously well. Everyone here will testify as to what a difficult journey this is, but personally I find that when we all chip in with our stories and experiences and snippets of advice, it really helps to clarify just how well we’ve done and to what extent we’ve recovered, either physically or emotionally. Most of all, it helps to chat with those that have the Tshirt.
It’s unfortunately true that there are many sad stories here, and I agree with you that it’s important for those that have had this type of surgery to be able to share it with each other for the emotional outlet it provides, to know that others know what we mean, and to know that what is happening to us is normal and has been experienced at some point.
I also noticed in your profile that you have psychological concerns over recurrence. Maybe bit by bit we can all help you with that in some way. It’s something we all wonder about, but personally I live for today and view the immediate tomorrow with anticipation rather than dread. Ben is great for telling us to count our blessings, Steve inspires us to push further and don’t give up and Leisha has such a lot of experience and kindness, and she is such fun. And you’ve probably met loads of other great people on other threads too.
So, anything you want to ask, please do. xx

Hi Wendy
First of all I just want to say that you’ve done really well coping with the surgery and you are still doing really well by getting involved with discussions about it and actively seeking support and advice. It took me many months before I even felt like going near to a computer, let alone talking to anyone, so you are doing fantastically well.
Having read your profile I see that you had an open oesophagectomy, so if it’s the transthoracic (Ivor Lewis) then welcome to the club as most on this thread have had the Ivor Lewis surgery. Without going into too much detail here, the Ivor Lewis would leave you with large scars from breastbone to navel and from under the right breast around to your spine. Does that sound like yours? Anyway, as it was an open procedure it’s still very early days for recovery, and although all of us will know what you’re going through and sympathise, it does get a lot better over time. You don’t say exactly what your main problems are, but I can guess some of them, which would include nausea, extreme tiredness and fatigue, diarrhoea and stomach cramps and possibly dumping syndrome. This is something that causes quite a lot of discomfort after eating and which should just last for a few months but can go on for a long time. However, it is manageable with a specific diet, which I think would also be compatible with your diabetes. Your dietician would have discussed your nutritional requirements with you, such as eating very small meals often. This link will tell you about Dumping Syndrome:
http://www.mayoclinic.com/health/dumping-syndrome/DS00715/DSECTION=symptoms
Anyway Wendy, if you have any specific questions, please let us know and either myself or the other lovely people here will be only too happy to offer their experience and support.
It’s great that your family are right behind you and have been your rocks throughout, and I’m positive it all leads to a smoother and easier recovery.
Stay strong. xx

Hi Leisha
Are you still celebrating or just trying to recover from celebrating Lol? I don’t suppose Ed whipped you off to Paris for a few frogs legs and champagne? Well, you’ve got the wonderful paella to come, that is one of my all-time favourites and is easy to eat even with dumping. Do you know what? I made a lovely sangria a few days ago and it was perfect. It’s a good way to get the 5 a day fruit. Only kidding! I don’t want a nurse to be telling me off. Regarding the software for drawing. You might already have such a facility without realising it. Some MS packages come with Microsoft Photodraw, which is a perfectly good tool in which to manipulate images. The best though is Adobe Photoshop, but it’s quite expensive.
Anyway Leisha, the main thing is are you doing alright after your surgery and recovering ok? And Ed, how is the dumping and his overall recovery now? I shall miss you when you go on your hols you know. xx

Hi Steve
We went to York yesterday and I think you’d like this city very much. Maybe when you were driving coaches you visited? The York Minster took 250 years to build and was finished in 1472 and around it are the tiny cobbled streets with their antique shops, and architecture dating from the 13 century. It’s a lovely place. Anyway, I hope you’re ok and not overdoing things, as you seem to be a very industrious man that seems to like to do lots of things. Just remember to take it easy sometimes. Let us know how you are and what you’ve been up to. xx

Hi Ben
I love to hear your sunny comments such as, ‘there are no bad days, some are just better than others’ because it’s so true. Even if the weather is like custard. I didn’t know you were at sea level, so you and Trixi must enjoy long walks on the beach. I hope the docs don’t keep you waiting too long as I for one feel almost as nervous as you do, since I’m waiting with you. Take good care and enjoy the walks. xx

A peaceful evening to all.
Love Crystal xx