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.

Mixed up, unnatural emotions.

Fortiemac
Posted by

I had a "total shock" diagnosis of oesophageal cancer mid December 2019 and began chemotherapy last week.

I was given to  believe that surgery would be the preferred initial treatment, but tests showed that it would have been too risky (age/fitness).  Also, due to my medical history, the preferred chemotherapy drug was discounted and I am to receive the Capecitabine/Carboplatin combination plus radiotherapy.   While I of course defer to the medics' judgments, I feel disappointed that my treatments are somehow going to be below optimum.  I'd like to l hear of any others in a similar situation.

I began chemotherapy last week.  There was a bit of difficulty with the cannula and I passed out (it happens with me).  But I was only on the drip itself for 60 mins so very quick compared to most others.  The following day I had terrible "runs" and found myself back in  hospital to check incase of infection.  Overnight stay in a side-room, and negative.  Otherwise  I have had absolutely no side effects.  Yet.

I have been reading other posts here and feel so sad for those people who are expressing their desperation and fear, especially the waiting and not-knowing.  I don't understand how I am not having those feelings (I'm a terible coward).   I am a sensible scientist by profession and I think (??) I accept the  figures (UK, well-sourced) for survival and I know it's a bad outlook.  Perhaps it's my age (73):  many people seem so much younger and with kids (I have no children).  I suppose I should be grateful, while it lasts, that I'm not getting awful fear and worries and sleepless nights and all that I know it could kick in anytime.  Is it because I don't actually have any symptoms at all of the disease itself?  Nor yet treatment side-effects (only on my first cycle of chemo and radio-t to start in a few weeks).

My fear is of pain and the effectiveness of the palliation.  And that I'm not properly aware that my partner could well be feeling bad about it all.

This is a mixed-up post, but it's helped to write it and I would really like reactions and experiences that chime with any of you.

Thank you for reading.

Fortie
Milie
Posted by

Hi Fortie  You having a good attitude to this awful disease and will I am sure help you as you progress with your treatment. My husband had the same attitude which has been a great help like you he did not have much symptoms to start with he is 71 years old. But it is a long road with ups and downs.

He was diagnosed with squamous cell cancer on 19 November 2018. Our local hospital said his cancer may not allow for a cure in view of suspicion of tracheal invasion. He got on a clinical trial at another hospital he was diagnosed T4N1M0 and his treatment was chemotherapy and high dose radiotherapy. He was unable to take any solid food for eight months.He had a feeding tube inserted and got all his nutrition from that. November 2019 the feeding tube was out and he started eating normal but still has to be careful eating. He has gained weight and generally health has improved.
He is due for a CT and a PET scan in the next few weeks. Today he had a lovely dinner but has always to be careful eating now.
I worried a lot more than he did although I never let him know that.
Good luck with your treatment and I hope it all goes well for you.
BrentS
Posted by

Hi

i too was a sensible scientist when I was diagnosed. After the initial shock and mix of emotions I just got on with it. I had ECX chemo - two of my three drugs were the same as the two you are having. The other, erubicin is a dreadful drug which causes your veins to necrose and your hair fall out. I was lucky to get surgery. The tumour on resection had shrunk to just a thickening of the oesophageal wall. So the chemotherapy was very successful. It made me wonder if surgery was necessary.
Don’t worry about the mixed up emotions. You are not in control of your emotions. Perhaps as a scientist you thought maybe you should be able to control or understand your emotions. Yes, it is tough on partners, but the only way I found of helping my wife was to let her do things for me, which made her feel like she was helping, which she was, of course.
The surgery was tough on the anaesthetist and surgeons as my heart kept flipping in an out of sinus rhythm. However I got through it ok. The recovery took two years. So you have at least been spared that!

Now, six years later I’m doing OK. I hope your journey is as successful as mine. Someone I know diagnosed soon after me wasn’t able to have surgery and I still see him every now and then, still getting up to dance; still cheerful six years on!

Keep is updated with your progress, we are all wishing you well.

Counting the days, making every day count.

Brent

Fortiemac
Posted by

Hello Milie.   It's very helpful to read your interesting post.  I  am encouraged by how your husband's been progressing and that, although it's been pretty tough on the way, he is making it through.  I'm pleased to read that medics seem to expore every aveneue of treatment, even for those who are getting on in years.  (I'm 73.)   I was really delighted to note that you felt able to go to the sun for a holiiday (albeit slightened shortened).  That you have both felt up to that is great and a good indicator of real progress - not that we, in fact "do" "abroad", but it's nice to think our annual holiday cottage breaks with the dog mightn't after all, be a thing of the past.

I too was offered a place on a clinical trial (of increased dose of radio-t), but I'm now ashamed to say I was too scared to take part.  I am worried about the radio-t as it is, and the thought that I might be getting a 20% extra dose was too mkuch.  But I have feelings of "letting the side down" as, of course, it's because people have been altruistic enough to have taken part in trials in the past that they are able to optimise the treatment I am now benfitting from.

Very best wishes to you both, and goood luck with the forthcoming scans.

Fortie
Fortiemac
Posted by

Hello Brent.  Thanks so much for your post.
You clearly had a rough time "on the table", but I note yhou say "lucky enough" to have surgery.  They judged that my heart/lungs wouldn't be up to it, and I defer to their judgement.  From my simpleton point of view it just seems that if they can lop out the main chunk of the beast there would be less for the other treatments to deal with.

Incidentally, I can take your advice with relish about helping my partner by allowing things to be done for me!  Actually, no change there I am so lucky.  I must try to be less grumpy.

Your report of your "journey", and that of your friend who didn't get "the knife", is just so encouraging:  you can't believe how cheering it is to have a hope of optimism rather than me coming to negative assumptions based on the statistics.

I'll be forewarned about "erubicin", but it was part of your //successful// treatment after all, which is worth knowing.

Thanks again for posting, and good health for the future - the days that count become the years that count.

Fortie
Johnyboy1957
Posted by

Hi fortie I had same chemotherapy but was on it for four hours five sessions every wed and 25 radiotherapy then a break of 2 months then op three weeks after seen surgeon who said100% cancer free also said did not need op has chemotherapy and radiotherapy had worked but could not be sure till he cut it out and had checked biopsys hope it goes well for you

John

Keep the hope