Val W Stone, from Wexford, in Ireland

[valstone]

I am new here by the way and would like to hear from other patients with this problem. In the first posy-t I forgot to mention that I am approaching my 77th. Birthday and this might be relevant for some people.

I suffer from Oesophageal Cancer and was diagnosed in September 2014 by Mr. Diarmuid S O'Riordain in the Beacon Hospital following an OGD.

He referred me to Prof. John Reynolds in St. James Hospital in Dublin. I also got a second opinion from Dr. Justin Stebbing in Harley Street in London who confirmed the first diagnosis.

What is interesting about my case is that my youngest brother died from Adenocarcinoma of the Oesophagus at the age of 44- I have the Squamous variety which appears to be more slow growing. In addition, I have 3 first cousins, all on my Father's side of the family, who have had the same condition- that is 5 in the same family.

I have recently been to see a geneticist, Dr. David Gallagher in the Mater Private in Dublin and he is going to examine bloods to see if there is a genetic factor at work here.

My inital treatment consisted of a 7 week stay in St. James Hospital in Dublin where I undertook Radiation almost every day and Chemotherapy (with Taxol) twice per week.

I had very little or no reaction to either, other than perhaps two or three days of extreme tiredness and had only a minimal Hair loss !

I also had very little sickness during this period and was able to continue to run my business from the Hospital bed with minimal difficulty.

Once the Radio and Chemo had finished I was sent home for 6 weeks and was brought back in on 30/4/2015 with the Operation taking place the following morning.

I was held in Hospital for ca 6 weeks after the Operation and then allowed home once my Bloods were reasonably satisfactory. After a week or ten days at home I developed Pneumonia and this proved quite difficult to clear and had to have both Lungs drained of large amounts of Liquid.

It took several weeks to recover from this as the first lot of Antiobiotics used did not work well !

Once I got home I was forced to have almost monthly OGD's to have the Oesophagus "stretched" but once I had passed the year after the operation I have not had a stretch for about 8 months now and this means I am eating again, almost normally.

I do however suffer from a DUMPING syndrome and also have periods when I experience "Light Headedness", which I cure by eating large amounts of sugary things like Ice Cream or Toffee/Chocolate etc.,

I am shortly going to have a Pump fitted to measure my sugar levels to see if diet can be changed to alleviate this situation.

I get occasional periods when I suffer from Acid Reflux but this is mainly caused when I slip off the 3 Pillows I use at night and I generally cure this by taking some Andrews Liver Salts in water.

I have lost about 15-18 kilos and monitor my weight on a regular basis and seem to have settled down in the range of 74 to 75.5 kilos (naked weight) and I am definitely NOT losing weight now.

In general I have to say that I have never felt as healthy as I do now and I really mean this.

My experience has been a really positive one and I would be more than happy to discuss my case with anyone about to undergo an Oesophagectomy or anyone who feels nervous and worried about the problem.

My advice would be to keep positive, think positively and act positively also.

The photo shown here was taken before I was diagnosed and when I was a bit overweight !!

[AlanWare]

I am so pleased to hear your story.

[valstone in reply to AlanWare]

Thank You Alan- I hope you are also keeping fit and well ?

[brucemillar]

Val

Since my surgery I have suffered with "severe hypoglycemia". This has seen me admitted several times to hospital and fracturing my spine in two places. It is now controlled with drugs (Acarbose) which slow down the rate sugar is absorbed into blood. This combined with regular, self blood testing, and knowing my own symptoms, has allowed me to return to full time work and some "normality". The hypoglycemia is bundled by the medics with "dumping syndrome" This made t difficult for me to get it taken seriously. It was after I was referred to a Gastroenterologist in London Bridge, that I was prescribed the Acarbose. This had an immediate and lasting effect and since then I have had no bouts of unconsciousness or hospital visits.

The trigger for me is sugar, with chocolate being the worst. My blood sugar will spike upwards then crash within an hour of eating sugary foods or sweets. That crash will be witnessed by extreme anxiety, hand shakes, sweats, flashing/strobing vision, stumbling then collapse. The way to avoid the collapse is to take Dextrose at the onset of the anxiety. That brings the blood sugar back on track.

To a blood glucose meter (which I use) it shows my blood glucose will spike up past +13.8 then quickly crash to -2. It should be between 4 > 8 in healthy people. The Acarbose and sugar avoidance keeps it stable at around 4.8 with me.

I crave sugar like never before, especially in the evenings.

Good luck and thank you for a very insightful post.

Bruce

[valstone in reply to brucemillar]

Hi Bruce,

Many thanks for your very interesting response to my recent posting ! You have certainly had a huge problem and I feel for you in that regard. I was to have had a Sugar Monitor fitted last Tuesday but had to cancel as we had a Family bereavement which intervened. Nothing to do with my condition !

I also take DEXTROSE Tablets- up to 5 at a time when I feel the "Light Headedness" coming on and this usually happens me when I am driving the car and can be a bit dangerous when on a Motorway !

The Dextrose works quite quickly for me and I revert to normal fairly quickly but I always keep a supply in the car now on advice from my Nutritionist in St. James Hospital, Dublin, as well as some sweets- chocolate and some Lucozade too.

Dumping can be a big problem for me at times but not on a constant basis, luckily.

Let me know if this helps you ?

Kind regards,

VAL

[valstone in reply to brucemillar]

Hi Bruce/Alan,

One thing I forgot to mention in my first posting and it might be very relevant to you all and that was that I also had my Gall Bladder removed on the same days as i had the Oesophagectomy ! It had a load of small stones and afterwards the Doctors commented that it was a wonder i didn't have serious problems ! I think this has helped me hugely with minimal Acid Reflux problems.

Interestingly, when I left Hospital I was on 40 mg Ezomeprazole per day and I decided to stop using themsome months ago and it made no difference to me.

I take the view that perhaps we do not need so much medication and especially medication that does not appear to be useful ?

[brucemillar in reply to valstone]

Val

We share some common ground here which I hope is good. I also was prescribed Omeparazole for life. I just took it as I figured that was what I was supposed to do. After a few weeks I started to try and discover what happened if I didn't take it? Result!! The constant nausea that I had suffered with stopped immediately and has not returned. I rarely have reflux and sleep without being propped up.

The hypo's do need to be controlled. Like you, I had the symptoms but did not really worry about it, thinking it was just what it was after surgery. Then while watching TV one evening and chomping my way through more Quality Street than is good for any human, I started to notice the TV was strobing and I was sweating and starting to feel "out of my body". Just as I was trying to work out what was going on? I collapsed into a glass coffee table and lost consciousness for several minutes. Sadly this was in front of my kids, so caused some upset. It did however prompt me to speak to my surgeon (The wonderful James Gossage) who got me into a Gastro Enterologist. By that time I had worked out that I cold recreate the symptoms by simply eating chocolate. So the cure was "don't eat chocolate" and take Acarbose with every meal. I have suffered a couple of fits since then. On both occasions I stupidly forgot to take my Acarbose. Also on both occasions I was out walking my dogs in the countryside and was found unconscious lying in the road and hospitalised.

It is a very serious condition and has shown no signs of getting any better. A small price to pay for what we go through and gain in doing so.

St Thomas's was wonderful. The fabulous medical team could not have been more caring for me and my family. James Gossage and his team are my heroes. He never ever gives up and always takes my calls and is happy to meet me. A truly inspirational man. I owe him everything yet he looks for nothing. He is also a very good golfer, as I found to my cost when I took him and his team out for a days golf as a thank you.

To play golf with the people who saved your life is surreal. A truy fantastic experience and one I shall always treasure.

[valstone in reply to brucemillar]

Bruce,

This is really interesting to hear about ! I eat loads of chocolate but without any problems like you have described.

I am delighted to hear about your Surgeon as I have had a similar experience with Prof. John Reynolds at St. James Hospital in Dublin. He has the reputation of being the best man for Oesophageal Cancer in Ireland.

I intend to talk to St. James' now about Acarbose as I had not heard about this until you mentioned it.

Kind regards,

VAL

[valstone in reply to brucemillar]

Hi Bruce,

Back to you again ! Just to let you know I have been looking at a lot ofyour earlier posts and I can see you were in St. Thomas' Hospital ? My eldest Daughter, Millicent Stone, is working there(and in Guys) as a Consultant Rheumatologist !

[Hidden]

Thank you for your post and telling your story. Welcome! Glad you are doing so well.

There are some genetic factors that have a bearing, especially in adenocarcinoma, but I do not think they have any more than a proportion of the risk. Squamous cell carcinoma is much more prevalent now in the eastern parts of the world.

Taking sweet drinks or food is a way of rapidly re-balancing the system when you suffer from the insulin spike some time after eating. Your digestive system is shorter now, and relatively undigested food reaches the lower parts of your system and tricks the body into releasing more insulin than it should. This can ultimately be dangerous if, say, you are driving or have experiences like BruceMillar describes. So people often have sweets or dextrose tablets for emergencies.

But the preventive approach involves steering clear of sugary food, or things with added sweeteners, and concentrating on low glycemic index food, as if you were diabetic. Food does vary in the way it releases glucose and shifts the sugar:insulin balance in the body. Some people have meters to measure their balance, and sometimes find wild swings, so you will be interested in the results of the meter you are expecting. Eating little and often also helps.

The reflux, especially at night, is a problem. Some find pillows do the trick, but you can also try raising the head of the bed / mattress, and putting a duvet underneath the sheet to try and stop you slipping down so much. Gaviscon also helps - I had not heard of the Andrews Liver Salts trick before.

We often think of those in Ireland, especially around Lollipop Day that raises awareness of this disease.

[valstone in reply to Hidden]

Hi Alan,

Many thanks for your very interesting response to my post.

One thing is for sure and it is very important i think, is the "eating little & often" comment. This is where I fall down so to speak ! I often go without food for several hours, especially when in the Office and when I do , I usually get the "Light Headed" feeling coming on.

The Reflux at night does not happen to me that often but when it does, it is most unpleasant ! Had not thought about Gaviscon- thanks for the tip ! Andrews works quite well though and is pleasant to take.

Bruce has certainly gone through the hoops with the sugar problem and I am really glad this has never happened to me.

Are you a Medical Doctor ?

Kind regards,

VAL

[Hidden in reply to valstone]

I am not medically qualified, it I have talked to many patients after their cancer treatment and listened to a good many talks by medical professionals.

[valstone in reply to Hidden]

Thanks for the clarification Alan! Much appreciated.

Regards,

VAL

[Quicksilver_1]

Val

Very interesting to hear your story and glad that you are staying so positive.

Like you, I have suffered from dumping syndrome but that has just about gone now, nine months on from my operation.

I have cut out most refined sugars from my diet. I can tolerate some but it's easier to avoid altogether. I don't eat white bread or any other high GI foods, and also avoid whole fruits like apples and bananas, sticking to things like berries instead. Even too much potato can result in sweats, dizziness and a racing pulse up to one and a half hours later. So I never go anywhere without some glucose tablets in my pocket. There is so much sugar and fast-release carbohydrate in so many things we love! But it's rare that I have an 'episode' now and I seem to have it under control.

As far as the sliding down the bed goes, I would highly recommend an adjustable bed. I bought one secondhand and replaced the mattress with a new one. Note they are longer than standard mattresses, at 6'6". You will be so much more comfortable. When I go away, I either take my foam wedge if practical, or an inflatable wedge which I recently bought. Mine is called 'Bacup' and was purchased via Amazon. It has the all important 'flock' coating so won't be slippery and is about the right angle/height. Combine it with a pillow or two. More importantly, and additionally you might want to try putting a pillow or rolled up soft blanket under your bedsheet positioned high up under your thighs, so your buttocks are against it. Anything too hard/small like a rolled up towel can cut the blood supply off to your legs! This should stop you sliding down as much.

Best of luck and enjoy your upcoming birthday.

PS If you buy a new adjustable bed you shouldn't pay the VAT. Likewise for the foam wedge, because it's for medical use.

[valstone in reply to Quicksilver_1]

Thanks for your post ! Very interesting.

In my case I have a sweet tooth and always had ! Unlike you I eat huge amounts of fruit and in particular Bananas- It would not be unusual for me to eat perhaps 5 or 6 in a day- sometimes more ! I eat a lot of potatoes too !!

Up to about a month ago I had not eaten Bread since my operation but lately I have been "nibbling" at it again but I would rather stay away from it to be honest.

Your tips about the bed are also useful for me and i will work on these now and buy the "Bacup" you suggested.

Kind regards,

VAL

[Quicksilver_1]

It just goes to show how different we all are!

The Foam wedge would be a more semi-permanent solution if you're thinking about home use, whilst the inflatable seems a good travel version though not as wide. Also, for what it's worth, I was given Peptac on prescription rather than Gaviscon. I find it less 'caustic' and it comes in different flavours.

Best wishes

[valstone in reply to Quicksilver_1]

many thanks for this suggestion.

Regards,

VAL

[brucemillar]

One thing I should mention. I tried some Diabetic Ice Cream. This was a very bad idea indeed. I remain convinced that what I ate was frozen weapons grade laxative that was working on a maximum humiliation setting. Certainly never to be eaten if planning on wearing white trousers on the golf course.

If it helps: I use an Accu-Check Mobile- Blood Glucose meter fairly regularly. That helps to give you the confidence around what foods etc cause the hypo's. It also helps in the event that your doctor reports you to the DVLA as risk while driving. You can use the reporting function to demonstrate that you are in control.

I am trying to get a Libre Freestyle Kit on the NHS. But they will not prescribe this (yet). This is a wearable technology that you set the low and high parameters and it transmits to a monitor or a smart phone 24x7 alerting you if you are going up or down and allowing you to take action (Dextrose) before you get the wobbles.

The patches are £50 each and only last a couple of weeks. Hence I wanted the NHS to prescribe. It works out cheaper then the Accu-Check cassettes and lancets so would save them money. I got very little assistance from the NHS. I then wrote to Jeremy Hunt thinking he would have some interest in saving money....WRONG.

He got a staffer to write back sending me a load of links to diabetes sites. It was obvious that neither had read my letter or had any interest in helping.

Good luck.

Bruce

[valstone in reply to brucemillar]

Brian,

This is also very interesting for me. Many thanks.

I am also incontinent from a previous Prostate Problem (not cancer) so I do not have to really worry about the colour of the pants I wear !!!!!

Kind regards,

VAL

[valstone]

Aoife,

I think you have done very well after such a long period after the Operation. Keep some Dextrose handy ?

Regards,

VAL

[valstone]

Aoife,

I really think you need to discuss this problem with a qualified Dietician and they can then help you get the right solution.

[gutlesswonder]

Hello valstone

You may be interested in some of these posts..........

healthunlocked.com/user/gut...