Oesophageal cancer - radiotherapy

Hello Florence Rose

Your poor hubby sounds like he's really going through it at the moment. 3 months in hospital is long enough for anyone. I know I struggled when I was in for a couple of weeks.

I can't corment on his treatment but I can give you the benefit of my knowledge of radiotherapy.  I had 25 sessions alongside chemotherapy. I was told that the radiotherapy was the 'main' treatment and the chemo was the belt and braces.  I can't lie, the mask was uncomfortable and the RT did burn my neck but I had already had RT in the same area 30 years ago. So my burn reaction may have been specific just to me.  I have been told I can't have any more RT as the human body can only tolerate so much and I've reached my limit. Hence I am now on immunotherapy and unfortunately the chemo-radiation didn't work for me.

Sorry I can't offer more information but this is my experience and hope it  answers maybe one or two questions.

Wishing you and your husband some peace in this crazy whirlwind xx

Hi Mellabs, it is very kind of you to reply. Was your radiotherapy also for oesophageal cancer?

Even from a quick glance through comments on the Forum my husband's situation does seem particularly bleak. He was diagnosed in October when he was brought in to ITU after having a heart attack in Oxford tube station coming from his work as a dancer so all his dance equipment is still by his bed. This was caused by his oesophageal cancer which they then discovered.

He has been told there are no circumstances in which he can ever eat or drink anything other than by feeding tube -   and with a stent also in - this is painful and debilitating. 

I suppose I was wondering if radiotherapy can turn anything around in a more positive direction. However I appreciate there is no answer that doctors can only take his treatment day by day. However It is a consolation to just have the forum to reach out to others suffering from this dreadful disease. My husband has no family in the UK other than myself and our two kids who are too young for me to speak to them and are in the midst of university exams etc. I am trying to talk positively and encourage them in their school work when I am with them - hence can't tall about this matter - and they are anxious for my welfare too in the midst of this emotional turmoil. 

Thanks and love to everyone - feel for everyone going through the emotional turmoil of this difficult illness with their loved ones.

xxx

Hi Florence Rose

Yes mine is squamous cell carcinoma oesophageal cancer (what a mouthful!!).  I had symptoms of struggling to swallow before being diagnosed and I know it's difficult to diagnose oesophageal cancer but it must be so hard to see your husband off to work one day and three months later he's still in hospital.  It's just shocking for you.

Like your husband I will never eat or drink again.  I have a RIG into my tummy where all my meds and nutrition goes   I've had it for 14 months and become quite an expert with using it now.  Yes I still get hungry and my husband has been lovely and not had any takeaways while I've been home (what he eats when I'm in hospital is his business). I suppose I am mentally strong lady as I don't generally get to bothered when he sits down with his roast dinner or cottage pie. Sometimes I even cook it for him.

RT from what I understand can perform miracles. But everyone reacts differently. Only time will tell. Cross your fingers, pray, do whatever brings luck to your hubby but targeted RT can produce good results with and without chemo so don't give up heart 

I fully understand you keeping alot from the children.  But be careful you don't lock them out.  They want to know what's going on and want to be there for both of you. I suppose its knowing the balance between too much and too little info. Just remember, they'll be your strength when and if the time comes.

Take care

X

Hi Mel,

It is wonderful to hear how strong you are and that you have your husband's support too. Great that you are coping well with the RIG. That has been discussed for my husband - he was going to have it put in last week - but then had so many infections - it is also now on hold, if not cancelled altogether. 

My husband also likes to see me eating and in his earlier months in hospital we were going out together to cafés near the hospital - even though he could not eat or drink - so I think he could cope with that aspect well too.

Thank you so much for your hope regards the RT. My husband was so down about it yesterday when I visited that I was in tears too and broke down on the phone to my son. The doctors waltz in in groups of 5 or so on their ward rounds and then can be very austere - as they were yesterday because of a new bug my husband had developed as a result of all the antibiotics. Sometimes it feels like a daily parent/teacher meeting where your child is bottom of the class...

Mel, I am unbelievably grateful for writing to me.You are almost the first person I have been able to speak to and I can feel all the life, strength, nobility, and love you have developed to cope with al this. 

Thank you,

xx Florence 

I totally understand what you mean about the Dr's rounds. I used to write down all the questions I wanted to ask and when they came round I would have my piece of paper and say I have some questions.  Then I wouldn't let them go until I had finished asking my questions. Because you do feel like you're imposing on their time and don't want to hold them up. This way you're taking some control and forcing them to listen to you. If I've learnt one thing it's that you have to take control. Push for answers. Push for tests and appointments. And certainly never feel like the naughty child's mother.  Take control and you will feel more involved and helpful in your husbands fight.

You are so welcome Florence. I've felt like you are. I totally understand. I know you can friend people on here I'll see if I can find out how.  Then maybe we can chat easier.

Take care and best wishes to your hubby

X

Hi Florence

I also had squamous cell carcinoma oesophageal cancer like Mel. I was diagnosed in March 2021. Mine was mid oesophagus, it blocked my oesophagus completely and I had a stomach feeding tube fitted. I had radical chemoradiation - chemo and radiotherapy at the same time. I had 25 radiotherapy. I didn't have a mask like Mel did, because mine was further down, between my boobs. At the preparation radiotherapy session I had to lie with my hands above my head, holding onto a bar, and they made a mould around me, so that I was in exactly the same position for every radiotherapy session. I had three dots tattooed on me - at the front between my boobs and one on each side round by my ribs. They look like biro dots. The actual radiotherapy session was fine, I put on a gown, open at the front, lay down, hands above my head, they lined me up using the tattoos, kindly covered me up as much as possible, the machine went around me and it was all over in minutes. My skin felt tingly on my back and front but didn't burn. I put E45 lotion on every day. As the sessions progressed my oesophagus became more inflamed, but I was very lucky and that didn't last very long. Also I want to say that the staff were all so lovely and kind. It was during covid when family weren't allowed in hospital but my partner was allowed to sit with me and wait in the waiting area. 

I hope that radiotherapy helps your husband. You've both got a lot on your plate. There are lots of friendly people on here who have been through this with different treatment plans and have lots of great advice. 

Take care,

Amanda 

Hi Amanda,

Thanks for your kind message and so glad to hear that your radiotherapy sessions went well for you.Tough that you had to face this battle too during Covid.

My husband will only have one RT session on Friday - to stop with bleeding. He had the RT planning today, He is plagued with pneumonia infections and various new bugs all being treated with ever more powerful antibiotics.  This off course creates new bugs too but we have to take it day by day and see what tomorrow's scans tell us and hopefully his reaction to RT on Friday is positive.

I don't even know the particular type of oesophageal cancer he has - just learning all this now from your and Mel's chats. Probably because the big issue is the infections for his medical team at the moment there is not much conversation about the tumour itself naturally.

It is such a consolation to have this forum. Yesterday I had broken down completely but the kindness of the forum gave me strength to be positive today which helped my husband's spirits a lot.

Love Florence 

Hi Mel,

Thank you so much again but my husband's battle now is his reoccurring infections rather than his cancer. This is what is causing the doctors so much stress in the past few days. He is in University College Hospital so everyone there is wonderful. It is doubtful he will be well enough for the RT - he was only having a single session in any case.

You do marvel on how the doctors can do these rounds of over fifty patients with everyone's situations so unique and having to communicate such complex scientific as well as often such life-shattering and sad news.

Take care to you too xx

Hi Amanda,

Did you wear gloves & socks to help stop neuropathy from the radiotherapy? If so, can you recommend any? There are so many to choose from.

Kind regards

Ande

Hi Ande

I wore some thick, fluffy soft socks. They were a present so I'm afraid I don't know where they were from, but I've seen similar in supermarkets, Peacocks, Primark. I think of them as bed socks. I didn't wear any gloves. 

Mine did get better after a few months. My feet were particularly painful in the evenings. My hands and feet are generally colder now than before treatment. 

Take care,

Amanda