Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Newly diagnosed Oesophagus cancer

Silverfox65
Posted by

Hi Robby

Nice to hear from you.

Yes we are quite young to have this condition but my mind is we are fortunate to find out when something can be done to treat it.

My operation was 5 weeks yesterday and i`m pleased to say getting stronger each day.

I dont worry about things I cannot change , I put all my energy into how I can make things better.

So, do as much exercise as possible pre and post op , it makes so much difference.

I`ve almost completed a blog to share my journey and help others if possible... here`s the link for a sneak preview

myoesophagealcancerjourney.wordpress.com/

Feel free to ask me anything anytime, this condition is beatable

Best Wishes

Robby
Posted by

Hi Silverfox65,

Thank you for your reply, what an excellent blog so well put together and I think pictorially it gives a more complete view of some of the words and phrases used which of course means its more relatable. You are doing so well and like you i have a wonderful wife and daughter, what more reason do you need to be positive. The initial shock has gone now and I am keen to commence the journey and with people like you in my corner I will beat this awful cancer.

I have not lost any weight to date I am sure that will come, it is the unknown effects of the chemo that is a little daunting, the operation concerns me less if that makes sense at all. I will keep in touch with you and please do likewise. My local team in Warwickshire have been excellent and the care to date first class.

Together we will beat this, my best wishes and kind regards to you and your supportive family.

Robby.

 

RLS67

Silverfox65
Posted by

No problem Robby.

Thanks for the blog feedback :)

Re Chemo, I`m not sure what combination you`ve been prescribed but recommend you take each day as it comes. I understand it can be daunting but everyone reacts in their own way and it`s needed to get us better

Keep in touch and let me know anytime I can help

Runninglady
Posted by

Thank you for this reply shine27

Your very right about not reading too much about the negative effects.

We have a meeting this Wednesday to discuss the next steps so I'll update you then.


Just a question about your Mum's feeding tube- is that just to give her extra nutrition as well as eating normally? 


Thank you


Eileen x 

Jelliott
Posted by

Hi Running Lady

My husband lost a lot of weight prior and just after stent was fitted. However his first chemo session was two and a half weeks ago and although he hasn’t gained any weight he hasn’t lost any more. Also after a bad week post chemo he is now eating well and enjoying food again. His next chemo is Friday so I am expecting another bad week but if it only is a week and he continues to improve we can cope. The stent procedure was not pleasant but definitely worth it. Good luck and please keep in touch and send updates it is very helpful to me to hear others experiences. Good luck and many thoughts. 

Jelliott

Robby
Posted by

Hi 

I am waiting for the laparoscopy appointment it should be this week then seeing the oncologist. What I don't know yet is my defined treatment plan as soon as I know I will let you know. I am struggling to lose this constant burning pain in my chest it is becoming ever present now and is uncomfortable I think it may be the tumour growing and blocking the tube, I do have a hiatal hernia too I just want to get cracking with the treatment. My physical and respiratory tests were a pass so that was good news today.


Will keep you in the loop. Hope your recovery keeps gaining momentum.


Speak soon

Robby

RLS67

Silverfox65
Posted by

Hi Robby

Good luck with the Laparoscopy - they are likely to do that pre first Chemo and then pre op. It's a short surgery and you maybe able to get home later in the day / early evening. The outcome will then determine the treatment plan as you say as you get passed from Surgeon to your Oncologist.

Sorry to hear about the burning sensation . I had a hiatus hernia too  Early in my diagnosis one of the specialists suggested a sip of Gaviscon liquid before bedtime - worked incredibly well for me, so maybe worth a try. Either way keep your surgeon/doctors  fully updated , they may have some more meaningful recommendations 

Great news on the physical / respiratory tests. Keep strong an positive Robby 

Best Wishes

shine27
Posted by

Hi Eileen,

My mum got the feeding tube 2weeks before the stent as she had lost a lot of weight.The plan originally was chemo and radio but due to her being weak and her poor kidney function she has had low dose radio palliative care only. 

My mum had always been a poor eater and without the feeding tube she would not have enough calories even though she can eat with the stent perfectly well. 

Good luck Wednesday keep me posted

Shine27 xxx


Diana1961
Posted by

Hi Jelliot , How are you doing ? A good day ? We started treatment yesterday , radiotherapy followed by Folfox chemo which is continuing now at home through a diffuser pump . It feels good to be on the "attack" finally and so far symptoms ok and nausea at bay . The eating is a issue though , making us both miserable and although he is maintaining weight I am wondering about the stent ? When you say unpleasant procedure , can you explain a bit more what it is exactly ? ( these are my husbands questions ) I am thinking of you and hope you are keeping your head above water . 

Diana1961 

Robby
Posted by

Hi Silverfox65,

I carry a small bottle of Gaviscon liquid around with me in a little dispenser, I note now that i am eating alot less and avoiding the foods that will get stuck like chicken and bread and burning from chocolate, its good training for the inevitable. I do take it and it gives temporary relief, it feels like your breastbone is burning what ever you eat and can take your breath away.

My laparascopy is for the 8th or 9th next week, disappointed not this week as just want to crack on and see it as another week wasted. I have had conflicting views of taking Gavison and Omperazole which I am taking two a day for, some say don't combine yet my suregon's registrar seemed to think it was ok.

Enough about me, how are you and the recovery going? You are a positive light for me and I appreciate your support and I do not lose sight of what you have endured to of late.

Keep the faith,

Rob

RLS67

Silverfox65
Posted by

Hi Rob

That sounds a bit painful , I was lucky not to have too much of that 

Re the Gaviscon and Omperazole I'd not heard of any issue taking the combination and it worked ok for me, though I had heard long term use of Omperazole wasnt recommended...I mentioned this to my surgeon / dietitian and post op they've put me on Lansoprazole - just 1 fast tab a day and I dont take any Gaviscon at all now :) 

I'm now coming upto 6 weeks post op, staples/ stitches all out and healing well. It's critical to keep moving / walking when you can, so managing a few short walks within the day - this helps with lung capacity / breathing and of course keeps any DVT issues at bay. 

After the initial 2 weeks of puree'd foods I can now manage most things the girls are having , providing I can mash with a fork or chew very well.

The Surgeon and Oncologist are v happy with progress so far and I start ECX Chemo again next week - that's a 9 week course (3 Cycles of 3 weeks - starts with an Infusion day at the Hospital followed by 20 days of tablets ....and then start again ) .

If you want to talk any time let me know - same thing goes for your wife i.e. if she wants to talk to my wife ?

Not sure if/ how we can Private Message on here but expect Macmillan maybe able to help.?

Best of luck with everything - remember to keep your fitness up as much as possible pre op - it makes a huge difference 

HCLS
Posted by

Hi Rob

I just read your post and wanted to recommend soluble paracetamol and you can take two four times a day. My dads upper GI nurses recommended dad had these before eating as it eased the pain. 


Another good tip is to drink coke while eating, for some reason it helps the food go down. I am guessing it is the bubbles!


Waiting for the tests is awful and you have my full sympathy. I used to ring up on behalf of dad and pester for cancellations. The staff do not mind they often told me that they would go the same if it was their dad.


Take care


Hannah x

Runninglady
Posted by

Good Evening Shine27,

I hope your Mum is getting stronger everyday.


We met the oncology consultant yesterday who said the best way of treating the cancer is a five day course of radiotherapy. 


We go in tomorrow for the assessments.

They hope to start the treatment as soon as possible as Mum is loosing so much weight, and just swallowing Ensure drinks is hard work. 


Thank you for being a great source of information and support.

I'll update you tomorrow xx 

Diana1961
Posted by

Hi Robby , I am jumping in on this post to ask how you are doing ? My husband was diagnosed mid Sept T3N1M0  and its been a learning curve for both of us since then , massive shock followed by seemingly endless appointments and  tests , and finally he has started treatment which is 5 weeks radiotherapy combined with chemotherapy every 15 days and then if all goes well  the operation in Jan /Feb . I am interested in hearing about  a man going through this  because my husband has never been a great communicator and I know he is scared and frustrated but he cannot voice his fears and we have had some very difficult days because of that . Anyway I wish you courage and strength getting through this arduous difficult time , its shit but it will not be so forever . 

Diana1961 

Hopefull11
Posted by

Hi Rob,

Sorry for jumping on the posts.

My dad was getting alot of burning and really bad heartburn.Because of the tumour he has trouble swallowing pills and gaviscon just didn't cut it.

The Drs don't like to tell you, (its quite expensive,I work in a pharmacy )but they can prescribe oral suspension lanzoprozole which you take 1 5ml spoonful a Day,and it has just been a miracle for my dad.

Wishing you all the best.