Hello: I was diagnosed last May (201... - Oesophageal Patie...

Oesophageal Patients Association

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Hello

Sammy1968 profile image

I was diagnosed last May (2017) with a tumour were oesophagus meets stomache. I had chemo for 3 sessions and the the operation last October and then 3 more sessions of chemo.

The surgeon said it was touch and go but they got it all out :-)

I did get 2 bad infections in wounds, 1 in front wound and 1 in rear wound while in hospital which took a while to get rid of. They had to remove staples from front one and pack it everyday.

In the area of the front one it still feels like someone is sat on my chest sometimes, Nurse said is is probably deep scar tissue due to the infection

It is not a problem just takes getting used to and it hurts when I sneeze or cough, under my arm gets a sharp pain aswell when I sneeze or cough.

The thing I find difficult now is eating.

As the operation changes your insides, the way your stomzche sits you can not eat normally.

You have to eat little and often and this takes some getting used to, I still have not mastered it and it causes problems.

Before the operation I had a good job and did a lot of travelling and had enough money to take time off and rest but now I would like to get a job but the eating is a problem.

What kind of job can I get where I can eat any time I need to but also I can not eat same thing 2 days in a row, for instance I can have a slice of toast one day and be fine but next day eat a slice of toast and it mskes me feel sick, the feeling sick is trapped wind and it can take an hour or more to feel ok. When it happens I have to sit or better still lay flat and try to get wind up.

I think in the operation the part of oesophagus that controls being sick must have been removed because I can not be sick

It is difficult to explain to people when it happens.

The other problem I have is I dont have normal bowel movements, I have to tske laxatives every night ans some times they don't work, but when they do I need access to a toilet straight away.

Could the symptoms I have with eating problems be classed as a disability?

I do get ESA but that stops next month as they said it only lasted a year and I did apply for PIP and did have enough points but they said I wasn't going to be ill long enough. I have appealed but waiting for a date but don't hold out much hope of it being successful with some of the stories that have been in the news lately of people being not far off dying of cancer and being refused it.

I have to eat breakfast and evening meals as I am also diabetic and have to take meds with a meal twice a day even though some days I don't want to eat.

Anyway enough about me.

To anyone reading this eho is waiting for the operation, try not to worry about it and everything will be fine. Just take each day as it comes.

10 Replies

Sammy

You have had a rough time. Your sequence sounds like mine though I had four sessions of chemo before surgery and am just about to have third of four afterwards. Your eating and bowel problems mirror mine. As you say we just have to be patient. We are like toddlers learning what we can and can’t eat. What goes down well and what doesn’t? It varies and some days it causes me to “dump” and the next it’s fine. I have a very patient wife so am convinced that I will get through this and this support group has many stories of those who have. We are lucky to have been able to withstand chemo, surgery and more chemo as a path to a cure. Many can’t. Good luck with your dietary management. I have thought of buying a Tapas bar to allow me to graze on small meals throughout the day. Regards

Tanktank

Sammy1968

Due to having had cancer you are classed as disabled & so have further protection with the law if discriminated against whilst at work.

I have been lucky, I work in an office & have access to food all day, colleagues bring food in for me too. I do struggle fitting in 5-6 small meals as they need to be different just in case I go off them & that takes organisation & freezer space. But I am getting there.

Try government organisations & don’t be afraid to tell them you have had cancer & are classed disabled. They cannot discriminate you & you offer all possible ways to make work possible.

Hope you find somewhere,

Zantri

Tanktank profile image
Tanktank in reply to Zantri

Follow this link through CRUK which is very helpful. google.com/url?sa=t&source=...

Iuypoi11 profile image
Iuypoi11 in reply to Zantri

Hello Zantri, yours is a very interesting reply. I have just started a support group for oesophageal patients and we have one member who is finding her return to work very difficult. Being formally recognised or registered as disabled would help her a lot. Can you suggest any avenues I can explore to get more information for her and any future members for who this might prove helpful.

Best regards,

Michael.

Zantri profile image
Zantri in reply to Iuypoi11

gov.uk/definition-of-disabi...

Try that link. I have copied a bit of it below. It does not guarantee allowances but you cannot be disadvantaged at work because you have cancer.

Progressive conditions

A progressive condition is one that gets worse over time. People with progressive conditions can be classed as disabled.

However, you automatically meet the disability definition under the Equality Act 2010 from the day you’re diagnosed with HIV infection, cancer or multiple sclerosis.

I feel for you. All I can say is the whole thing is a learning curve, it takes a while to adjust and when everything seems to be sorted something else crops up. It really does get better and in a few months you will be eating, drinking and coughing more normally. I'm nearly nine months in since the op and now doing very well. Good luck.

Sammy1968 profile image
Sammy1968 in reply to slobjohnb

Hello....my op will be 12 months on halloween..it has got better over time and hopefully improve as time goes on.

Drinking I don't have a problem with although I can not drink much coffee or tea. I can drink one cup but have to wait a few hours before I have another one, Tea is not as bad as I don't have to wait as long.

It's the eating part that is the worst part, when ever I eat something I feel bloated even off a couple of slices of toast and I if burping was an Olympic sport I could win gold no problem :-), I need to carry a card with "Excuse me" in big letters as I will wear my voice out the amount of times I say it through the day :-).

As for the pain when coughing/sneezing I don't think that will get much better as the Nurse at the hospital who I see thinks it is deep scar tissue from the infections I had in the incisions both front and back.

Those infections are such a problem, I had an infection in my right lung and although that was soon cleared up I still have discomfort from around the chest area and cough up mucus. I count my blessings as I had prostate cancer 12 years ago and was treated with brachytherapy - a complete cure but as the Surgeon said "you won't be founding any new dynasties"!

Hi Sammy

Tough times for you but all sounds pretty normal in the ‘post IL’ op in my opinion - after surgery I never thought I’d ride again but here I am 3 years down the line (still crap days and pain) riding every day, competing and on the go all day long! I’ve been left with a few unpleasant side effects to - like everyone!

I eat to a total regime and ‘never’ skip anything even if I feel awful - works for me - I’ve been left with utterly no appetite and I have never felt hungry since surgery - you eventually get into the swing of things with regards to eating ‘all’ the time - hard at first. It’s early days for you - I’m sure you’ll get there and back working if you want to. I wrote a post last December called My Journey - worth a read. All the best

Hi

It is a long and hard journey after surgery but it is the only cure and so many do not get a second chance.

My surgery was 12 years ago so from my experience give yourself plenty ot time to recover, at least 24 -36 months.

Eating, I do graze all day, sandwich here, a couple of biscuits there, banana for lunch, etc... it is trial and error to find your way and what suits you, everyone if different so just take it slow and small until you understand your body.

Work, I went back to work after 3 months, part time for another 3 months slowly building up the hours to full time and this was in a combined shop floor and office role so it is possible get back to work in time, most employers are sensitive to someone with cancer, talk to them and explain what you feel you are capable of doing.

My bowel movements are not regular but not to your extreme.

Have you talked through everything with your CNS and Consultant? They should be your first port of call to contact and explain your problems.

We at the OPA can send you our information booklets and a card to show that may quick access to toilets, just ring our helpline number on our website opa.org.uk

It will get better slowly, trying to rush it may cause more issues so do take it slowly.

Kind regards

Dave

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