Esophagus issues, support

Hi and welcome to the online community

I can understand how going for countless tests and waiting for results is stressful and that you feel you know no more than you did when you first went to the GP. Unfortunately, all these tests are needed before it can be decided what's causing the problem. 

Once all the tests are in there will be a multidisciplinary meeting (MDT) when all the specialists will discuss what will be the best treatment for you. You will then have an appointment with your consultant when they will explain what they have found and what they're going to do about it.

When you do get your appointment for your results try to get someone to come with you as two pairs of ears are better than one and there might be a lot of information to take in.

If it does turn out to be cancer then come back here and I'll find you a group to join where you can ask questions and get support.

You won't be on your own

Sending a supportive (((hug)))

Thank you for your response. I have the appointment with consultant on Wednesday this week. Just wannabe get it over with so I can focus instead of feeling like I am in limbo. I appreciate you taking the time to read and send me a hug xx

I have had my results and I have esophageal cancer the squamous kind. I feel relief that they know and just want to get cracking. I'm very lucky that the consultant is confident that they are going for a cure and are trying to help me. Could you please guide me to a group or someone just in case I have questions. Hope you are well 

Hi , as I am awake at silly-o’clock I thought I would help you out and direct you to our Gullet (oesophagus) Cancer Forum where you will connect with folks on the same journey.

Follow the link and join the group. To do this hit the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts. If in the future you don’t want to receive notifications just switch off the email notifications tab.

The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first posts.

All the very best.

I have done this now. Thankyou for taking the time to respond. I couldn't sleep and thought I would make it count lol. Hope you are well

I am well thank you . Yes sleep can be a problem in the early days of a cancer diagnosis but one tool that helps is a note book.

I would always recommend you get note book. The note book is the place where you record EVERY question that comes to mind.

The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some questions and go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

The note book should have questions like:

What are the proposed treatments Chemo, Radiotherapy, operation......?

What are the names of the Chemo Regime?

How many cycles of Chemo and how long will each cycle last?

Does this require inpatient time (over night)

How many sessions of Radiotherapy and how long will all the treatments take?

Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.

All the very best for the months that are ahead.

.........oh and keep your eye on the greater good in all this.

Hi

I'm glad to see that my friend Thehighlander has shown you a group to join, although not so glad that you were both up at silly o'clock! I have to confess that I was fast asleep.

I'm well thank you although waiting for the results of a recent biopsy on a lesion on my arm. Hopefully, I'll get the results of that soon. The not knowing is always the worst part I find and it's good to hear that your consultant is confident that they're aiming to cure you.

All the best

x