Hi jellybeans.. Sorry to hear about your husband. 

My husband has T4-N1-M1 oesophagus cancer diagnosed at the beginning of August. 

His is not operable unfortunately. 

I wish you both well on your journey. 

Hugs. 

Mandy 

Hi Mandy I am so sorry your husband cannot have an operation,  the diagnosis of  oesophagus cancer is so hit and miss.  Our GP messed about with his persistent cough for  a year xrays were done came back clear complete blood tests .. normal.    It's only since diagnosis and talking to the consultant and specialist GI nurse we have learnt that none of these tests show up oesophagus cancer.    We repeatedly asked for an endoscopy nothing  was done until he presented with a swallow problem.  What's so annoying we were told at endoscopy that these tumours are slow growing give you no pain but present with symptoms of acid reflux and a cough !!  Asked had hubbie had any of these symptoms we said yes and were asked what had we done!!!   Something needs to change with how they diagnose oesophagus cancer !  I have had a meeting with my doctors and they say they follow the GMC guidelines !!!  My  hubbie would not have been referred for endoscopy with a persistent cough only when you present with a swallow problem!!    At this stage the tumour is blocking the oesophagus and if malignant has nearly always metastasized, the guidelines say the next step would have been a lung specialist!!!!!     I can only say I feel your sadness and sorrow facing this cruel diagnosis and my heart goes out to you both much love Jackie

Hi Pilgrim

Thank you for your reply,  at last I have someone on my wavelength.  I am so sorry to hear about your husband's diagnosis.  Quite ironic it was a locum at our practice who referred my husband as well.  The chemotherapy has been administered via a PICC line and a pump worn constantly for 6 weeks which pumps chemo around his body 24/7.  Every 21 days we had a 7 hour stay on the ward to have chemo anti sickness and fluids.  The type of chemo he's had can damage the kidneys so it has to be administered slowly on the 7 hour one to allow fluids to flush his kidneys out throughout the day.  He had no side effects till the last week suffering with a sore mouth.  Like you I was beside myself when I read about chemotherapy and its effects  but now we are 6 weeks on our outlook is very different to chemotherapy.  There are different types of chemotherapy and every individual has a chemotherapy to suit them.   I hope this has helped put your mind at rest a little.  We had heard so many horror stories we like yourself were very apprehensive.  He had a CT scan last night Friday and the multi disciplinary team are meeting Tuesday to discuss the results hopefully our nurse will ring us the same day or following day for an appointment to discuss findings and their plan of action.  It has been a double blow as hubbie had Prostate Cancer in 2017 he had 37 consecutive days of radiotherapy.   We cannot believe we are back at the same cancer unit now having Chemotherapy.   He gets quite down and angry this has hit us now.  It is what it is and we are dealing with it to the best of our ability.  Like you my heart is breaking that my lovely husband has this awful disease again.   If you would be willing would you stay in touch with us and we can hopefully support each other through this journey together.    My heart goes out to Mandy and her husband and all the other people who for them chemotherapy is their only option. Life is so cruel.    When you sit there and you are bombarded with diagnosis tests results decisions it is so difficult to take it all in.     To all of you out there I am sending all my love.    Jellybeans.

Jellybean Thank you, this is a very difficult time for us all. I have my own health issues but am trying to stay strong and calm for my husband. You sharing your husband’s experience of chemo effects is hopeful and helpful. We are four days away from number 1. I suspect we are older than you and your hubby and this is the only time I have used a chat thread. Never used any social media and at the moment don’t feel I can commit and go personal, no offence meant, it is just me, old fashioned? Please forgive me...but I will look for your posts and post our news when I can. I hope the MDT meeting goes well and you have positive news. Pilgrim

Hello Pilgrim

I fully understand how you feel about posting your personal journey.

My husband is 77  and I am 65.    We wish you all the very best with your cancer journey.  The feelings of anger, disbelief, sadness are so overwhelming but with time they do get a bit easier.  We hope your husband's chemotherapy goes well. Take everything a step at a time,  there are organizations out there who will support you throughout this time.   Ask, if you are not sure of anything you are told throughout this journey.

We are here if you ever find yourself in the future needing to confide, or discuss any of your concerns.   Sending you and your husband all our best wishes with everything.  Thank you for your kind words to us.      Jellybeans and Hubbie.  

thanks for your well wishes.... same to you both too

I'm just so numb right now,  dreading anyone asking if I'm ok,  I just break down

Mandy

Hello, I'm so so sorry to read everyone's posts. Oesophageal cancer is so prevalent at the moment and as you have all said, so, so difficult to diagnose.

I have some experience of the end to end treatment plan: chemo, operation and more chemo. with one or two complications thrown in for good measure. ️

if anybody would like to contact me directly I am more than happy to help, support and/or, advise from my experience.

Ruth

Thank you for your reply I have read your blog !  Hubbies scan has come back good  we are seeing our consultant on Tuesday with plans for an operation ! I am very open minded and aware of all the risks and would like to stay in contact with you!    Jellybeans. 

I am here any time you need a friend to talk to Mandy  x