Worried : my husband was diagnosed in... - Oesophageal Patie...

Oesophageal Patients Association

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Worried

Hap2260
Hap2260

my husband was diagnosed in Feb with espegeoul cancer he has had ecx chemo then he was having ivor Lewis which was unsuccessful as the tumour was attached to main artery to the heart he then went on to have 25 sessions of radiotherapy and chemo we are now 8 weeks past the radiotherapy and he is still in pain he can eat has he has stent fitted he seems to have have and we are struggling can anybody give us some positive news we are both in our early fifties and had so many plans

19 Replies

Hello there. I’m very sorry for your situation and I sadly am not qualified to give you any advice but I wanted to send you a hug cos I know your going through a tough time to say the least. My father in law was diagnosed at a similar time and he had the operation back in July. They say he isn’t a candidate for chemo post op as he is 79 but he does have a very good specialist nurse assigned to him for any questions or concerns. He has also been assigned a Macmillan nurse and I wonder if speaking to one of these could help address some of your concerns and just give you some guidance? I know the folks on here are also fantastic. You are not alone. Speak to the nurses or your GP at the very least and I also know there are group meetings organised by this charity. Best wishes to you. Xxxx

Hap2260
Hap2260 in reply to PhysioD

Thanks so much for your reply we have been assigned a nurse so hoping things get a bit better we just want a wee bit life back we used to walk a lot so just wee walk around our local loch is our goal take care xx

PhysioD
PhysioD in reply to Hap2260

I totally get it. You just want your old life back and it’s sad and frustrating. All those plans you’ve both made feel unachievable etc etc. But making small achievable goals now is the way forward, don’t look too far into the future, concentrate on the small steps and speak to the people “in the know” and take comfort from your friends and family. Know there are others in similar situations and I’m rooting for you both too even though we’ve never met! X Try and keep strong and hopefully things will become a bit clearer after speaking to the nurse. All the very best. Dawn xx

Hap2260
Hap2260 in reply to PhysioD

I wd just like to thank you for your advice my husband has recently been told he has only months left but I took your advice and have now been assigned a Mac millian nurse who has arranged a special bed at home to we can spend some quality time at home it's still very hard and your advice to take one day at a time and not look to far into the future thanks for listening and I will try to stay strong x

PhysioD
PhysioD in reply to Hap2260

Hello there. Thanks for your message. I just want to give you both another hug and I am sure the nurses have been very helpful during this very difficult time for you both. Keeping strong is easier said than done isn’t it... don’t be scared of letting your emotions out! I’m glad the nurses have been able to sort a bed. “Small” things like that can really make a difference when all you want to do is be comfortable and enjoy your precious time together. I’ll be thinking of you and it is my wish for you both to be at peace and really cherish your time right now - that’s what matters now. Lots of love. Message me any time. Dawn xxxxxx

Hap2260
Hap2260 in reply to PhysioD

Thanks so much for your kind words it really means so much they are a comfort to me hopefully we will have some extra time together to cherish thank you again .Elizabeth xx

PhysioD
PhysioD in reply to Hap2260

Every person’s “journey” is so individual and different and the doctors can’t predict outcomes 100% so I guess we just have to deal with each day as it comes and try and not think too far ahead. Each day is a gift hence called the present so I just pray you can try and enjoy each day for what it is now and just do whatever you want to do each day. ❤️ Lots of love to you both. Dawn xxxxx

Hap2260
Hap2260 in reply to PhysioD

Xxx

Hap2260
Hap2260 in reply to PhysioD

I thought I wd just let you know my husband caught a serious chest infection which has went into pneumonia we are now at home we have the palliative care nurses coming in everyday to deal with his medication how horrible can this get i am so worried i won't cope he is mostly sleeping he is now struggling to speak we never just got anytime at all the only thing is when I watch my four children caring for their dad i see what a good caring influence he had in them sorry I just needed to talk xx

Amycaz
Amycaz in reply to Hap2260

Sorry to read this. We went through the same with my Dad. He was only 58. We nurses him until the end and wouldn’t have had it any other way. He knew we were there and wanted us there and we wouldn’t have been anywhere else. We have no regrets in that, other than that we could not save him. :-(

Sending love. It’s a very difficult time. You are not alone. X

PhysioD
PhysioD in reply to Hap2260

Just read your message. It’s just terrible isn’t it and I’m so sorry this has happened. You’re in the middle of it all and it’s just so so tough. My heart goes out to you. It just doesn’t seem fair does it. Try and get some sleep and rest for yourself if at all possible and you sound like you have both done an amazing job with your four children. Keep them very close. Your little support network for one another now. Sending you a hug as always. Dawn xxx

Hap2260
Hap2260 in reply to PhysioD

Thanks for your reply I know we are doing the right thing it is a really tough time but having all his family around is helping my husband is only 57 and we had so much life left but as you say we wouldn't have it any other way than at home hope you are your family are doing fine take care and thanks for your message x,

PhysioD
PhysioD in reply to Hap2260

I’m gutted for you Elizabeth. My husband is nearly 52 and I couldn’t imagine going through that in the next few years... It’s bad enough seeing his dad go through it all but mercifully he seems to be ok at the minute. It must be so difficult for you. It just doesn’t seem right does it. You seem like a lovely lady and just know you can always come on here whenever you need to. Dawn xxx

Hap2260
Hap2260 in reply to PhysioD

Thank you it's a comfort to know their is lovely people like yourself to listen because when I have worries I we go to my husband because I don't like to burden my children hope your husband keeps well take care and thanks again for taking the time to answer xx

Hello Hap,

I feel sorry for your situation, too. Isn't your husband offered a higher dose of chemoradiotherapy now? I was told when not being a candidate for surgery, a higher dose of radiation and chemotherapy can make the tumor disappear. (At least in the case of squamous cell cancer, I'm not sure as to adenocarcinoma.) Do get a second opinion on this.

Best wishes, Monika

Hap2260
Hap2260 in reply to monikaf

Thanks for your reply he has had 25sessions of radiotherapy and chemo we are now 8weeks past but he still in pain which we are trying to control our next scan is in Dec to see if the tumour has shrunk but because he is still in pain we are worried hopefully things will will improve

phil
phil in reply to Hap2260

At our support group we have a member who also can not have the operation. He has had sessions of Chemo and did not respond. He has now been offered Immunotherapy and is doing well. He is 49 with a young family and we are all hoping

this new treatment works for him.

At your next appointment ask about immunotherapy and would your husband be suitable

Our best wishes

Phil

Hap2260
Hap2260 in reply to phil

Thanks so much for that will ask at our next app hope the member you spoke about is doing well it's good to hear some positive news as my husband has given up thanks again for that

Have you looked into gene therapy?

There are some posts on here where people are taking that cause of treatment.

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