Dad’s post op recovery

Hi Han_123.

After reading your post I just wanted to reply. Like your dad I had my oesophagus removed, totally, back in July 2021. On being discharged from the hospital I had a feeding tube inserted into my small intestine in order to ensure that I was getting enough nourishment as I had lost approximately 10kg after my surgery, with which I had serious complications including my having to stay in an ICU for almost 3 weeks being ventilated as I had developed pneumonia, both of my lungs had “collapsed.”

Han_123 these were very serious and difficult times, especially for my loved ones, I was oblivious as to what was happening as I was under very heavy sedation, in a different world! When I was deemed to be fit enough and I had put on sufficient weight I was advised and able to commence on a “soft diet” quite like your dad, although I did struggle immensely with my swallowing. 
On contacting the team of cancer nurses, associated with my treatment plan, I was seen by my consultant,  who carried out “a dilation” in October 2021 and then again in November 2021. Theses “dilations” helped me with my swallowing, although there were and are times when I have to be very careful with what I eat. 
II had a third “dilation” in February 2023 and again this had helped me with my swallow, although I have to remain cautious with my diet, I would love a medium to well done steak, dream on!

Seriously though Han_123 I can totally relate to and empathise with what you and most importantly, what your dad is going through right now as I have been through a veimilar experience and I am still on my journey with cancer. Please keep in touch and let me know how things are going with your dad and I would honestly recommend that you contact the Team who are associated with your dad’s treatment plan and explain to them what is happening.

A favourite quote of mine, and one that I used when I had the opportunity, offered to me by Macmillan Cacer Support, to record a video, which can be seen on the Macmillan website and on YouTube, is:

”Cancer may have started the fight, but I will finish it”. Please don’t forget to follow things up with the health professionals and please continue to support your dad and be sure to take care and stay safe! Jamespmc (Michael).

https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/oesophageal-cancer-michael-s-story

Hello Han123

My dad has recently gone through similar to your dad. He had surgery in July to remove the cancer and needed a dilation in late September. He is obviously still healing and has just had his first post op chemo cycle.

I'm unsure dad is willing to continue with the chemo. He's fed up of the side effects which have come on quicker than the first time, the main one being lost of taste. We are struggling with dad's eating. He's not yet in a routine, and some things he just finds hard to swallow like bread. Psychologically it's affected him and there's things he dare not eat. He's on a feeding tube by night and hates having it in, but it serves a very big purpose right now. Dad's weight is such a worry to me and without the jej tube I dread how much more weight he would lose. The loss of taste affected him before surgery and now its starting again. 

It's so hard seeing him suffer and if he does stop the chemo, I can understand his decision. He wants to try and do 2 cycles but if it means loss of taste (which could last longer this time ) I don't think he could cope with that. Such a hard choice.

Hi Jamesp

Your words hit home about finishing the fight cancer started. My dad had surgery in July and his journey continues. He's needed 1 dilation up to now but he may need another. Is there a limit to how many you should have? Or is it just as needed?

You don't realise how the after effects of surgery can affect you. What a complicated and unpredictable journey. 

My dad is thinking of stopping his post op chemo after 1 cycle. He's just plain fed up of side effects and wants to get on with his life. While he wants to try and stop the cancer coming back, he has to weigh it all up with what he can stand happening to his body. He's had tingling of hands and feet, loss of taste (which affected him badly) bad back, fatigue etc and as he says 'he's just had enough.

The eating and weight loss is a constant worry to us. Dad is barely eating 1000 calories a day and if it wasn't for his jej tube helping to maintain some weight, he'd be in a far worse state. It upsets me terribly to see him like this but hes finding it hard to get into a routine. 

Hi

i am now one year post op, like Jamesp I had complications and ended up in ICU for 3 weeks so my post op chemo was delayed a little but I finished it mid March this year.

so far I have had 3 dilations which have really helped as food was getting stuck so I was having to be sick to get it out.  I now eat relatively normally although avoid the obvious stodgy foods. I was speaking to someone who had this op 23 years ago and still has to go for dilations when her swallowing gets bad.  I was told it was unusual for most people not to have at least one dilation and most will need more.  I was also told it is good to have them early on when the scar is still new as it is more likely to last.

With regards weight my weight loss (I have lost 25kg to date), it was not until after the post op chemo that I started to eat a bit more and the weight loss slowed down.  I know the team like you to start putting weight back on but that hasn’t happened to me yet although I am now stable.  I found I couldn’t tolerate any of the supplements such as shakes and gels as they were too sweet and made me feel very unwell so this didn’t help me I also refused the feeding tube, a hangover from ICU when I had tubes everywhere!

As I am sure you know it is a slow, hard road to recovery and getting used to the new eating habits and trying to avoid dumping I am still working on but it definitely does get better.  

Hi JacPop.

What you have posted is so very true in particular “getting used to the new eating habits” and yes it is indeed a slow and hard road to recovery! 
Given the serious issues and complications that I experienced after my cancer treatment and surgery, I had a rather frank discussion with my consultant, a true gentleman, and I mentioned that if “I knew then, what I know now,” that I might not have went through with the surgery. 
Being a straight talking person and one who does not shy away from talking about the precision and complexity of the surgery that I had to go through, he simply said: “Michael if you had not agreed to the surgery, then you would not be here.” 
Having heard this from my consultant I decided to accept that each morning, if and when I waken up and my 2 feet hit the ground, then it is a bonus!

Oesophageal cancer is a serious illness and it can be difficult to treat, and operate on, given where the oesophagus is located. The aftermath of chemo, surgery, dilations, dumping syndrome, all these are very difficult to handle, but faced with the alternative, I think that it is important for those of us who have experienced this horrible disease and for our families and loved ones, that we try and stay positive and take what assistance is on offer from our health professionals! 

Take care and stay safe

Jamesp (Michael)

All your posts on ghis forum are so true and very helpful to me who is struggling after my operation  in August this year . Weighf lose eating , bile have been a very big problem and i hope it will all settle down very soon 

Takd care all

Quite agree with you Jamesp I was told that although I was not lucky, I sort of was as out of every 10 they see 7 can not be offered the op.  I have really hung onto that and tried to appreciate that I have the chance to recover.

Nic nac it will settle down, it’s not as quick as any of us would like but when I look back I realise just how far I have come.  

JacPop

I know i am impatient  znd stupidly  thought i would have a quicker recovery.  

Stay Safe 

Thank you ALL for your honest and accurate responses. It just feels like a never ending rollercoaster. Hopefully this next stretch will make some improvements for him and we will start to see a bit of light in it all. 

It seems quite common for what dad is going thru and this group has and now will be my new lifeline for support.

Thank you all again, from the bottom of my heart. I will get round to replying to you all individually when half term comes around and I have a few weeks to pull myself back together again!! 

Please all stay in contact and stray strong. Much love xx