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.

Trying to remain positive for hubby

Wifeytohubby
Posted by

Hubby was diagnosed with stage 4 esophageal cancer Feb 2018. Due to spread to the liver he is unable to have the operation and has been having palliative treatment to control the cancer. 

The oncologist has been really pleased with how well hubby has responded to treatment, however the symptoms that hubby is experiencing does not reflect this. 

Hubby has not been able to swallow food since approx Aug last year and unable to swallow liquid since December, including his saliva, the oncologist confirms there is no blockage so the swallowing problem is likely a neurology problem. (thankfully Hubby has a feeding tube) 

Other symptoms currently include fatigue, weak muscles, insomnia, agitation, retching and vomiting mucus, and due to these symptoms he is also suffering from anxiety and depression. (all of which are being treated with various medications) 

He had a CT scan and MRI yesterday, so fingers crossed. I have also managed to get hubby referred to a hospice who are coming to assess him next week, hoping they can help with the symptoms. 

Is there anyone else who has responded well to treatment but struggled with similar symptoms? 

Trying to remain positive, which I know hubby is struggling with, due to feeling so awful all the time.

I have been reading through the comments on here for many months and not yet reached out. 

Wifey xx
Joshnosh
Posted by

Hello

First of all, I'm so sorry to read about your husband.  I hope he is feeling a little better today and you are looking after yourself.  I know you know this, but making sure you are taken care of is essential.  Please make sure you are taking time to relax, eat properly (see below), get some exercise and sleep.

I know how helpless you can feel when you are caring for someone with cancer, especially when they are unable to eat/drink.  My experience looking after my husband was very different to yours but I do remember the awful symptoms, side effects and other horrible complaints that go along with esophageal cancer.  They are burned into my memory!

From the sounds of it you are doing everything you can to support him.  You are not sticking your head in the sand but facing into what's happening and taking steps to make sure he is looked after in the immediate future.

Steve was on medication to control his secretions.... I'm guessing your hubby is on this too?  If not perhaps you could ask about it.

The only other advice I can give you is to go with the flow.  If your hubby just wants to sit and read/watch TV/sleep, then let him.  I remember being so upset that Steve wouldn't even try to eat towards the end (He didn't have a feeding tube).  In my head if he didn't eat he wouldn't have the strength to fight the cancer.  What I didn't realise until Steve explained is that the thought of eating made him feel worse, but he worried that I would worry so he forced himself, he felt I was babying him, taking away his dignity and his stomach was so full of fluid from the cancer cells he couldn't manage anything anyway. I gave up trying to persuade him to have "just one more bite" and instead we spent quality time together talking, holding hands and me reading to him (To Kill A Mockingbird).  I ate when he was asleep and then only food that didn't smell - bacon butties were a definite NO NO.

I wish you much luck in the coming weeks and months and I'm here if you need any support,

xx

Ruth 

Be kind to yourself, be kind to others and always walk in sunshine

Wifeytohubby
Posted by

Thank you Ruth for your kind message,

I ended up taking hubby to hospital yesterday as his latest blood test shows an infection, so they are now trying to establish where the infection is, so hopefully they can get to the bottom of why he has been feeling so terrible. He is feeling a little better this morning, so fingers crossed. 

Yes I am trying to take care of myself and making sure I am eating properly, rather than just grabbing what I can. I'm trying to prepare ahead so I do not have to think to much about it and it is saving me time. Hubby has three amazing sons, who are all looking out for me as well as each other.

I am also going out for walks most days and this is really helping with my well being, and also makes me stronger for hubby and my step-sons. xx

Yes, I agree completely regarding going with the flow, I have many times gone about keeping hydrated and fed, I think because I feel better caring for him and being able to do something. I am thankful for the feeding tube, I could not imagine what it would be like without it. At least I can help hubby hook up to water or food with no effort to him. He does sometimes get a little tummy ache, which is when hubby does not want anything, which I understand. So yes, going with the flow and listening to his needs, and spending precious time with him. xx

Wifey xx