Hello: Hi I'm Bruce. Diagnosed in May... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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brucemillar profile image
28 Replies

Hi

I'm Bruce. Diagnosed in May 2014 with Oesophageal Cancer I went through chemo and surgery in St Thomas's London in September 2014. Struggling with some bits now but not really sure what to expect. I have a young family so hope to keep going for some time yet.

Finding this site incredibly useful in looking for help with dumping symptoms.

Thank you to all for contributing.

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brucemillar
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28 Replies
OzOC2000 profile image
OzOC2000

G'day Bruce, I'm 15 years post op and still going strong. Sure life has its moments, dumping, the occasional shakes, slipping a bit low at night, nearly aspirating and having to cough up stuff out of my lungs. I too have a young family and to look at me you'd never know I had cancer. I might be a bit more careful than I was 15 years ago, pre cancer & kids, but life is good and the alternative doesn't bear thinking about. You'll be right for a while yet mate. Good Luck. Derrick

brucemillar profile image
brucemillar in reply toOzOC2000

Thank you. This is the kind of story I like to hear. I woke up to this. So thanks again ;^)

haward profile image
haward

Morning Bruce. You look well. Better than I did after six months. Keeping in touch with other patients on this site really does help. Welcome.

Haward

brucemillar profile image
brucemillar in reply tohaward

Haward

Thank you. Your pointer got me to here.

Lots of people do feel a bit 'low' at this point, but it really is just matter of getting your breath back and coming to terms with everything that has happened, including recognising the effect that all this must have had on your wife and kids. There is a bit of inevitable grief at loss of good health and strength. The recovery is slow; but the other side of that is that you will keep feeling a bit stronger and fitter week by week for a long time ahead. And recognising that odd aches and pains do not mean that the cancer is coming back. There are lots of people out there who do enjoy a good quality of life many years after this surgery, but sometimes it is not easy to recognise this when you are ploughing through the struggles of the first two or three years.

brucemillar profile image
brucemillar in reply to

Thank you for your kind words. I think I need a blood glucose testing kit that I can use if feeling not quiet right. That way I may avoid future collapsing episodes?

in reply tobrucemillar

Good idea!

SteveJ profile image
SteveJ

Good Morning Bruce. Just to let you know we are all here if you need to chat about any worries.

Kind Regards.

Steve.

brucemillar profile image
brucemillar in reply toSteveJ

That means and helps a lot. Thank you.

hunsdon profile image
hunsdon

Hi Bruce, I am now 2 1/2 years post op and like everybody has said life is different now yes but we grab it and keep going as its a challenge yes but so worth it, when you get to the first anniversary take a deep breath and then a big smile because its all good then but get to the second anniversary and then you can really laugh and cry as the journey you have been on is becoming more understanding with your new body and your life. We are all here to help each other.

Tina x

philsayer profile image
philsayer

Your story almost mirrors mine, Bruce - we have 9 yr old twin boys, and my op was October 2014. I'm now recovering, slowly but surely, from the post-op chemo. For the first time yesterday morning, I had "the shakes" and as always this site was my first port of call for reassurance and information - it really is the place to go.

Dumping is nasty, but I think I must have been lucky - I've only had a couple of attacks, and both times I had been over-ambitious about what my new mini-stomach could accommodate. (It does seem to be adjusting itself, and "growing," exactly as the surgeon predicted.) But yes, it is a long haul back - my wounds still hurt, the rib they broke to get access is still painful from time to time, I wake very early every morning, and have the occasional bout of depression.

But what really matters is that we are still here, and as parents, we have an important job to do - I count my blessings every day, and I guess most of us do the same. Good luck with the recovery.

brucemillar profile image
brucemillar in reply tophilsayer

Thank you and good luck. It does appear to be just chocolate or very sweet food that gives me a problem.

pferries31 profile image
pferries31

Hi Bruce. Welcome to the site. U will probably find that this site is a godsend as ure talking with people who understand what ure going through or feeling. Life has changed so much for all of us and that's a hard thing to come to terms with. U have young children and ime sure they will keep u smiling when u go through bad times. I know that my grandchildren give me that wee get up and go when ime feeling miserable. Wishing u a speedy recovery

guzzirob profile image
guzzirob

Hi Bruce, I'll keep in touch with your progress.. :-) I a cant give you advice but hopefully your experiences may help me. I was diagnosed in Jan 2015 and am on my 1st chemo cycle with the hope of surgery, at St Thomas's, in May/June

brucemillar profile image
brucemillar in reply toguzzirob

St Thomas's were wonderful to me. I could not have asked for better care. Add to that you get a great view of Westminster and the Thames it is a good place to be ill. I was looked after by the brilliant James Gossage. I owe him my life along with so many other wonderful people who have helped along the way.

Good luck.

david001 profile image
david001

Hi Bruce

Dumping is probably one of the most common symptoms post op but it is easy to deal with over time. You will come across two types - early and late - depending on how/when your body is producing insulin. Effectively the sugars entering the bloodstream are not meeting the correct dose of insulin or vice versa.

The OPA have a website and some booklets on the subject and do come along to the meetings at Guys/St Thomas where patients who have suffered with the symptoms over the years have some useful tips. We are often joined by the CNS or dieticians who you will already be familiar with.

There are also some threads on this website that discuss the problem more fully

Hope this helps

janiehun profile image
janiehun

Hi Bruce welcome to the site my husband is 5 years post op and to look at him you wouldn't think he's had cancer let alone gone through what he has. This site is invaluable as everyone is different but you get to meet others who are going through or have been through exactly the same as you. My hubby still has bad dumping and trouble with his sugar levels and aches and pains a lot of what he has will never go away but he knows the signs. Its early days for you but a good quality of life is better than the alternative. If you ever feel down or just need a bit of support we are here for you. Good luck x

brucemillar profile image
brucemillar in reply tojaniehun

Thank you. That is very kind.

Bruce

sallym profile image
sallym

Hi Bruce,

This is a very unpredictable journey but there is a lot of help out there. The start was very frightening but never did I expect that I would still be here 21yrs later.

So as somebody said to me ' Welcome to the club', there is a great bond between those of us who are in the same boat. Wishing you and your family well. Sally

Steve101 profile image
Steve101

This site is simply a God send. Such caring and helpful people. My wife had the op 10 months ago, some set backs, but overall direction is positive.

This site gets you through the tough times.

Thank you all!

Steve

Rowland profile image
Rowland

Hi Bruce,

I don't post very often - too busy most of the time , which is so good 3 years post op. I still have episodes of dumping, reflux etc but back working full time for 2 years now and because of the weight loss (fab figure for any clothes !) I would guess no-one who didn't know would ever even begin to imagine what I've been through and continue to be affected by. The good news though is that it is all manageable and you learn what is best to eat and what isn't. For me sweet things are also not good or too much bread and stodgy food. Over-eating any food is also not great! Small and often, hot drinks before food and definitely not straight after are my tips.

All the best - I am still only 52 and look forward to many more years hopefully!

Julie

brucemillar profile image
brucemillar in reply toRowland

Julie

Thank you. I agree about the clothes. I also plan to return to work (part time) next week.

Good luck.

MikeK profile image
MikeK

Keep positive as you are only 10 months post op. I am 64 now and had my operation in February 2013. This type of operation is extremely traumatic and it can take 12/18 months before you really start to see significant progress. As you can see from other comments everyone suffers from various aches and pains even after many years post surgery but believe me it gets a lot easier and although I still get tired at times I enjoy almost everything I did prior to my illness. Its very much trial and error with food and don't try to do too much and rely on your body tell you when to ease up!

brucemillar profile image
brucemillar in reply toMikeK

Thank you. Another mile stone today with a clear CT scan. Still having bad chest/rib cage pain since last Sunday's collapse. No idea why or what is causing the pain. Onwards and upwards.

brucemillar profile image
brucemillar

Okay. Got up today still not feeling physically great. I have a "yeucky" feeling in my bowel. Not sore, not even uncomfortable just not nice, kind of sick. i have a had a really rough week mentally. After my collapse and subsequent chest/rib pain (still receding) I allowed myself to be convinced IT was back. I had a scheduled CT scan in London Bridge yesterday. I spent the entire day with a black cloud over me. Trying to figure out how I would die and where, what would my kids miss etc. My wonderful consultant called me last night to tell my scan was all clear. Instantly life changed again. My depression lifted and I slept well for the first time this week.

Got up this morning and walked my two Siberian Huskies for 2 hours in the morning breeze. Conscious of last weeks passing out I tested my blood/Glucose before leaving home. Made sure I had some Dextrol in my pocket and my phone at the ready. It felt good to be out. Tired and slow paced but good. I managed about 6/7 miles. Home now. I still feel yeuck! I suspect that I have an underlying stomach/cold/upset, so will take it easy. I don't feel faint and am watching for any signs - blurred vision etc.

So in summary. I have gone from great- last Saturday. To passing out Sunday, then feeling yeucky since.

Is that considered normal? Should I just man up and get on with it, or should I be concerned.

I hate telling my wife I feel poorly. I know she worries and has done for far too long now. She needs to feel good and I am in danger of depressing her by sounding low. Tomorrow is Mothers Day. I hope I can be great for that.

sportsman profile image
sportsman in reply tobrucemillar

A bit up and down but much of your attitude is positive. You will learn to manage your condition over time. I had my op just a month beyond my 70th birthday. In 8 months time I shall be 80 and today I played 18 holes of golf with one of my grandsons and have just returned from dinner out with my partner. I was playing golf and tennis within a year of my op. OK I've been lucky plus brilliant surgery but not free from issues. Stay positive.

brucemillar profile image
brucemillar

Sportsman

Thank you. I want to get back out on the golf course. I miss it. Interestingly I swung a club last Saturday for the first time in nine months. As I then passed out on the Sunday and have had sore ribs since then that is one of the things that I considered maybe to blame for my pain. I know it's not but the mind had played tricks all week.

listen profile image
listen

Hi Bruce,

One year post op next week with a round of chemo after that. But pre-op my doctors told me to eat, eat, and eat while I was going through chemo and radiation. So I did! I had an incredible sweet tooth ate a lot of gelato or whatever I felt like and sweets were not my thing before. Post Op of my surgery tried to go back to that sweet tooth and it was awful. I no longer can eat a lot of sugary items for instance candy bars, carbohydrates only. Hang in there you have a lot of support on this site. I have learned so much from it that I tell my doctors what I need because I learned it from this site and have been able to consult a few other people in my area about the things I have learned and suggested this site!

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