Quick update on our journey

Hi Donna. Thank you for your reply.

My husband has small cell carcinoma in the junction between the Oesophagus and the stomach. They say his unique as usually this type of cancer is found in the lung. They are unable to offer surgery,

Only chemo and radiotherapy. Hopefully when he starts the radiotherapy, it will stop the bleeding. His having transfusions every two weeks as his HB is low

Hi Tina I have a friend I met over a year ago on one of the esopagus sites and her husband had small cell in his esopagus she is in the UK she said the doctors told her it's very rare cancer my husbands was andencarinoma very aggressive type.  My friend Lesley's husband has done really well with his treatment and she would be of help to you and would love to communicate with you if you have questions. Are you on Facebook or email let me know and I sill give her your contact.  

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Hi Donna.

I don't have a face book account but would like to contact her.

Hi Tina....I sent you a private message with my email did you get it?

Hi Donna, I am from UK , I had this type of cancer, had chemo and radio for 6 weeks then waited 12 weeks and had my whole stomach removed now 13 months later I am still around to tell the tale, 7 stone lighter am told I look amazing, I am 72 years young and would love to help anyone who is going through this awful illness to say there can be light at the end of the tunnell.

Hi Donna.

No I have not received it. I'll check my spam email. Things here are very difficult atm. Hubby has started radiotherapy to the brain and, well is not great. His unable to eat normal food atm as he gets pain when eating so soft diet and loads of smoothies. He has another endoscopy booked for 21 st April and then we will know on the 4th where we are at. I have a bad feeling about everything atm, as we seem to be getting alll the symptoms back as before he was diagnosed. He also has a spot on the lung but they are not concerned about that. They say the rad to the brain is a preventive measure. It's a long process and may or may not get any better. Financially it's a strain only having my wage paying everything. He does get PIP and stat pay, but when your use to two high wages coming in, our lifestyle has changed completely. We did however go away for a couple of weeks in feb which was bliss.

Hi Tina. Saw your post and had been wondering how things were going with you and your husband. My husband was having aches and pains and breathlessness. Had blood tests and found some lung fibrosis which was thought to be from the radiotherapy. Now it seems he has a connective tissue disordwe which he could have had for a long time. Nothing to do with the cancer. He is now a year since treatment finished and cannot have any more ct scans due to his allergic reaction. We were not happy with not knowing whats going on so his dr agreed he could have a pet scan instead which is on thursday. So back to scanxiety! Get results on 21st. Do get in touch and let me know how things are with you. Often think of you and Donna was asking of i had heard from you. She is currently on a cruise in the carribean. Lucky her. Lesley

Hi Lesley. I do do the news on the 21st is positive for you all. I know what you mean about the anxiety. I am so anxious of everything atm. My husband has his last radiotherapy tomorrow to the brain. He has been very poorly. And recently his been unable to eat a normal diet. He says it causes a lot of pain so is having a soft diet from t spoon. He is having a scope 21.4.17 with biopsies. We won't hear about results until 4th May. I am thinking the worst as well now as his unable to eat abnormal consistency of food. His lost weight and has no energy. Its been a long emotional journey, and we are no way from having our lives back. I'm back to work full time which upsets me as all I want to do is spend my time with him. People say it keeps me focused, but all I'm doing is thinking the worst, and that I panic when he doesn't answer the phone. May the 4th is not long but it seems like for ever away. As you do, all we want is positive news. It's certainly made me look at things differently tho. Hope it all goes well for you, and will be looking for your positive news, which in turn will give me hope.

Kindest wishes

TIna

Hi tina. Sadly Dereks scan showed some active cells back in the same place. This is really disappointing to say the least after being ok for a year. Our doctor suggests a further course of different chemo called CAV. Derek has agreed without even asking aby questions he says its a no brainer. I am however full of doubts! Is this going to help it go away or are we just looking at containment and will side effects be worse than before etc etc. Still it is his decision and i will support him through it again. But. Can i cope? Who knows. I am already on medication for anxiety and panic. Angry and uncertain again and upset at having to cancel a short holiday planned because of treatment. Sorry to have to tell you this news because i know you were hoping it would be good news to give you a bit of a boost. I hate cancer.....

Oh Lesley I'm so truly sorry to hear that. I can't believe what you are telling me, as we have just had an endoscopy on Friday. He was due to have just the throut spray but there was a blockage and it was too painful so he had anaesthic. They took biopsies during the endoscopy. After, they called us into a room. They said the cancer is still there and is 4cm, hence why he is unable to eat without it getting stuck. His lost half a stone in weight

He finishes rad to the brain two weeks ago. I have known for a month things were not good, just the fact that eating is causing so much discomfort. we are not due to see consultant till 4 th may, however they said on Friday they would like us to go in next week, so waiting for an apt to come through. Honestly it's just the worst news ever. we were hoping to go away if everything was ok, but it's not. His shattered all the time and sleeps most of the day, between having very low moments. I try to stay strong but I'm breaking. Im scared for him I'm scared what will happen next. I have completely shut my self off from everyone. I know i shouldn't but I can't handle the fact that while everyone else is living and enjoying life, ours has just stopped. There is no looking forward to anything anymore, we are not living, we are just here waiting. It's painful and well just everyone else is loving life, like we did, and it hurts. Why is it so painful. I feel so alone, I don't know what to do.