Oesophageal Cancer

Hi

Sorry you're on this journey. It sounds like you have a lot on your plate. I'm no expert but from my own experience, as the disease progresses swallowing becomes more difficult and appetite decreases. Some people need a feeding tube which I currently have after surgery. The feeding tube that I have needs maintenance and sometimes gets irritated and sore.  So this might be a challenge with the frontal lobe dementia.  I've found the specialist nurses and dieticians very helpful.  I hope you have a supportive team around you.

Take care, 

Suzy

Thank you for the info SusieW. Our oncologist is only offering a stent inside the oesophagus to help with swallowing because she is  worried that my husband will pull out any external tubes which could be dangerous. With nail clippers from his washbag he cut himself free from the drip he had after the endoscopy to diagnose the cancer. He is a very difficult patient as he has aphasia which means he is unable to communicate sufficiently well enough to take instructions or ask for help doing things.

Hello French Hen and Welcome

Thank you so much for taking the step to join this forum, I do hope that you will get some strength and support from the fellows here! 

We have all gone through different scenario's but all because of the same condition and it is this that enables an element of understanding that you may not receive elsewhere. 

Your situation is different in so much as your Husband may not be able to express himself, or show any understanding of the conditions that he has, and I am not sure that I will know enough with regards to how difficult this is for your to totally comprehend how tough things are for you both right now. 

 I think it is important to understand which type of OC your husband has, are you aware of the tumour type that he has? this may help you to understand how things may progress with him. 

Does he already have difficulty swallowing? are you able to offer him foods that he can still manage and enjoy?

Have you been provided with any other information of his condition? 

My husband has an OC diagnosis, he is able to manage himself and has been able to have treatment, so it will be a different experience for both you and I, but should you need anyone to reach out to, please do not hesitate. 

Also, in my signature below, there is the number for the Macmillan Team, please reach out to them, they have a wealth of information and support which should be able to assist you further in helping your husband during this difficult time. 

Lowe' 

I don't know much about stents. I'd guess a feeding tube will be pulled out. Being able to swallow is the big thing. It sounds like your consultant has that in hand. Might be worth asking your medical team if he could benefit from special  nutritional milkshakes.

Thank you Lowe. My husbands tumour is an adenocarcinoma and has not yet spread so at the moment he has no symptoms except a lot of reflux that is mostly mucous and loss of weight. He doesnt have difficulty swallowing but our oncologist wants to put a stent in his throat when the tumour grows bigger. I have a supply of protein milkshakes on prescription and I have bought some Huel nutritionally complete powder to add to everything he eats and drinks to add calories. I have spoken with the Macmillan helpline and they have referred me to their Admiral Nurse who looks after cancer patients that also have dementia.

Thank you SusieW. We have the milkshakes on prescription and I have bought a supply of nutritionally complete powder that I add to all he eats and drinks to add caliries because he has lost a lot of weight.

I have just been reading posts on this forum regarding stents and there are only bad reviews. In view of this II will try to avoid my husband having one fitted as long as possible.

It sounds like you are doing everything you can! You're really on top of it. Good for you!

Hi French Hen

Great to read that you have been in touch with the Macmillan team

With regards to the tumour, that is the same type as the one my husband has, with the limited treatment that your husband is being offered, I can only speak of what I think may have worked for Dal.  

In the early days (lol this was only 3 years ago) we focused on using a high amount of foods that contain anti-oxidants, we created daily smoothies that Dal would take, they would always include Tumeric and Super Green powder - these would also contain, full fat milk or cream to keep his weight up.  If I am honest due to the sugar content in fruit and veg used, this was the easiest way to maintain his weight. 

As you say, your husband does not have swallowing difficulties, therefore I am surprised that a stent has been mentioned so early on, Dal was advised to stay away from one for as long as possible, but then treatment was already being looked into for him.

Not knowing what the future holds is difficult for us all, but keep doing what you are doing, and stay as positive as possible 

Lowe'