Oesophogus Stage 4 1year on

Hi, so sorry to hear this It is really hard watching your husband like this I am in the same position. 

it’s such a horrendous time  for you both. 

my husband is terminal original cancer was  from tonsil cancer now with metastatic disease throughout his lymph nodes especially in his chest. He has had 3 rounds of immunotherapy in the last few months (previous radiotherapy and chemo)  but he is unwell and we are at the oncologist tomorrow for his scan results from last week following a hospital stay due to pneumonia.

The ward doctor didn’t sound to positive about his thorax CT so dreading tomorrow. 

We are really worried he is as you are describing how your husband feels, tired, extremely tired. Can’t be bothered doing any thing. He is struggling with his chest really hard to breathe . It’s a struggle to try and keep the weight on him so I completely understand this for you too. 

 It’s heartbreaking to watch them and feel as you stated useless as a wife. I totally understand where you are coming from.

i wish for good news from the scan for you both. I hope the immunotherapy shows some positive results 

it’s awful time: you are probably like us our life is measured by scan dates and results and next appointments rather than in months and years. You just live scan to scan appointment to appointment. 

Emma 

We are in our 40s and have small children. 

Thank you for you reply. I do hope things get better for you and your children.

All the best

Emma

Hi MrsEm

I hope you are ok.

We have the palliative community nurse coming out tomorrow to see my husband.

If you would like to message I’m happy to catch up with you.

Please take care

Emma

I think feeling useless is the worst part for me too. So many of the ideas we’ve been brought up to believe about what a ‘good wife’ should be, surround the ability to cook and feed our husbands! Watching them in pain and shrinking before our eyes, while being unable to tempt them to eat is heartbreaking enough, without the additional burden these expectations place on us. However, the oncology team constantly reassure me that just being there with my husband, whatever he is going through, is immensely important.  One of his nurses said to me recently, “Can you imagine what it would be like for your husband if he was going through this alone?”  

Please try to be kind to yourself as you face the hardest part of this terrible journey together.

Hi

I feel for you all. I am recently diagnosed Oesophageal cancer and to read where you are at in your journey is saddening. I would say as a husband that you do not know how valuable and well thought of your support is to your husbands. My wife has been great, not in a big showy way but in all the little ways that only couples know- a cuppa here, a favourite jelly there, words of comfort and encouragement.

Please ladies do not put down your worth or feel a failure, these journeys are hard enough with the support of others, to do the journey alone would be unbearable.

Just my thoughts and my good wishes to you all.

Laddo

Thank you MrsEm, Nenen and Laddo for your replies. 

We have had the palliative care nurse today, very kind and given lots of help and information. My husband is not at end of life but also very sad as we had to give end of life requirements etc.

The hardest thing to to do is to write my husbands 61st birthday card for tomorrow.

Take care and thank you Xxxx

• I lost my partner in march 2023 to esophageal cancer. He had  rare neuroendocrine mixed in with andecarinoma in his primary tumour. It spread rapidly and we got 5 months from diagnosis. It is such a cruel form of cancer as you can not maintain strength with a healthy diet. My partner did enjoy an ice pole and the odd fruit pouch when he lost his ability to tolerate food, lots of heavy cream milk too. I can empathise with how you feel I felt helpless too, but your presence and love is all he needs. I wish you both well on your journey take comfort in each other. 

Thank you so much. I’m so sorry you lost your partner. You are very kind. I hope you are well. Take care xx

Hi Emma

So sorry to hear what your husband (and you!) are going through.  I know what you mean about feeling useless.  We havfe researched possible treatments and trials since a few days after my brother was diagnosed and got quite hopeful at certain points - only to always have the oncologist tell us he didn't meet the criteria or his cancer wouldn't respond to whatever we'd read about.

Every day his wife goes off to cry quietly and we have long phone chats if she gets time to walk the dog.  She says these really help so if you don't have anyone close that you can talk to, then definitely ring Macmillan.  They support loved ones too and just getting to talk to someone helps.

Thinking of you both. 

Susan

Thank you for your kind words Susan. I am lucky to have support from family, friends GP and community palliative nurse.