Hi everyone!

Nashy1982 4 days ago

7 replies
75 subscribers
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Hello and good wishes to all here.

I just thought I’d introduce myself as I shall probably be spending some time on here throughout my journey. I’ll try not to waffle too much (although I’m sure I will!) as I’ll probably update my story when time allows to describe my situation fully.

my name is Dean and I’m 42 (nearly 43) years old. Had swallowing problems in October last year. After a series of failings within my local NHS (Staffordshire) regarding appointments being mismanaged, my mother and father decided to go into debt to pay privately (£1500) for me to have an endoscopy in early January 2025 at a private clinic in Solihull, Birmingham.

I had been convinced it was a hiatus hernia causing my reflux, which I had been experiencing for years and partially managed with lansoprazole. Imagine my shock and surprise when I was told that there appeared to be a malignant tumour almost completely blocking my oesophagus!

Biopsy’s confirmed a week later it was indeed OC. At this point I was fairly sure it was anyway. Devastating news that indeed took a good while to sink in, I have a wife, four step children (two in their early twenties and two who are nine and ten) and I have a sixteen year old daughter. They have taken the news very hard and I feel terrible for each and every one of them for having to go through this with me.

The waiting game then commenced, as I’m sure you’re all painfully aware of. After seeing my consultant a couple of weeks later following a CT scan, we were told it appears to be localised and at the time, around three centimetres in size, fairly encouraging news as he said they were 80% sure.

Due to my continuing difficulty swallowing (although I can still get selected things down and liquid Actigain drinks), I have recently (10th Feb), had a feeding tube fitted in my jejunum which I am about to start using for feeding tomorrow when my feed arrives. At the same time I had a laparoscopy performed also. My surgeon told me afterwards in the ward that they couldn’t find anything abnormal but am awaiting the results of the wash that detects any rogue cancer cells.

I’m a little sore and swollen still from the tube, I’ve been told this is normal and to expect it to heal fully within 4-6 weeks. It is only a week later and my surgeon said I had a fairly thick abdomen wall, so they installed the tube through an open incision which is quite long and sealed with staples. Probably why it is so sore at the moment.

I have been told I will probably go down the chemo-surgery (Ivor Lewis)-chemo route. Although I know that with something as serious as this, things can change rapidly and courses of treatment can be revised. I am currently being treated at the University Hospitals in. Birmingham. The team seem well managed and are very helpful.

My tumour hasn’t been staged yet, I assume this will be explained to me after the team have their meeting on Wednesday to discuss and then contact me to advise which route we can take. I have also had a PET scan (awaiting results) and the usual exercise and heart tests before I had my tube fitted.

I guess I’m here to see if anyone has had a similar experience? I have looked at the posts here and have been moved by your experiences. I have also found the information contained in your stories reassuring, I appreciate how honest everyone has been about their treatment and I feel better equipped to know what a hard road I will have ahead of me (it is very true that Google is not your friend when it comes to this, the statistics are terrifying!). I am under no illusion that this is going to be a very tough experience both physically and mentally.

I appreciate your time and each and every one of your stories. Although I’m very early on in my journey, I’m sure this space will give me some motivation to fight harder than I ever have when things get nearly impossible.

Thank you to you all for reading and I hope to be able to speak to you and hopefully offer support to others the further along my journey I get.

Take care all and thank you again.

Dean.

Cool Blue 4 days ago

Hi Dean,

Sounds like you are about a year behind me. I was diagnosed with oesophageal cancer in October 2023 after going to my GP with swallowing problems. Like yourself, I paid to go privately for my endoscopy as my GP told me that there could be a 6 week wait for one on the NHS. I had a CT scan on the same day and received my diagnosis on 24th October (the day before our wedding anniversary). After that, I had PET scan and laparoscopy and started FLOT chemo in December 2023. Swallowing improved after first session. Had my Ivor Lewis on 29th February (feeding tube fitted during surgery)and completed my post op chemo in June. I can’t pretend that 2024 wasn’t the toughest year of my life so far (I turned 60 in May) but I got through it with the help of my wonderful wife and, although still not fully recovered, I’m able to enjoy life again. You’ve got a tough journey ahead of you. Only those who have travelled that path before you (and their partners) can really understand just how tough it is but there is light at the end of the tunnel. In 2 days my wife and I fly out to Chile for a 31 night cruise which we optimistically booked in December 2023, just before I started my treatment. Being well enough to go has been my motivation over the last 14 months. Best wishes to you for the months ahead. CB

Dibden doll 4 days ago

Hi Dean sorry you have had to join this club ! Your story is very similar to mine diagnosed oct 4th 24 a month in hospital as couldn’t eat then had jej tube fitted and home with feeding pump, chemo started in Dec and on Christmas Day I had my first food since Aug 24 ! Bowl of soup and a spoonful of trifle ! After two rounds of chemo. I have now completed all four FLOT with very few side effects and surgery booked for 24th March then more chemo !! It’s a long journey but it really helps being able to share our stories and support each other as it’s not a common cancer ! Wishing you well Tricia x

Nashy1982 4 days ago in reply to Cool Blue

Thanks CB

Thank you for your reply and the kind words. It’s nice to know that there are some of us out there that can go back to a new style of normal after what I’m certain will be a life changing and brutal experience. I’ve been reading the posts here on and off the last few days and have seen that many others have not been so lucky.

I’m fairly young to have this, although I’ve seen examples of much younger people with it, and I was quite overweight (around 21 stone before, now just under 18) so I’m hoping with the tube, as annoying as it is and those other factors may help with keeping as much strength up as possible during the more testing times.

it’s great that you’re well enough to go on your cruise, I hope you and your wife have a lovely time.

thanks again and take care.

Dean.

Nashy1982 4 days ago in reply to Dibden doll

Hi Tricia

Thanks also for the reply. That must have been great being able to eat something again! I can still eat (just), but mainly puréed soup and those lovely actigain drinks that all start to taste the same after a while. They offered me the pump seeming as they were already operating for the laparoscopy, they said that I would probably need one anyway due to the amount it was blocking so I think I did the right thing, I just thought it better to get it done. It has set my family’s minds at rest also, as they know I’ll be able to get some sort of nutrition in me when I don’t feel physically up to it.

I think the worst fear for me at the moment is the chemo. I don’t even know which type I’ll be on yet, but I assume there’s a good chance it’ll be FLOT. I know everyone reacts differently, but I always like to assume things will be at their worst so I can prepare mentally and strengthen the defences.

I hope all goes well for you and it’s very good to hear of someone who didn’t have too hard a time on the chemo, it’s reassuring to know that, although rare, it can be easier or not as hard as you first thought.

Thank you also for the kind words, and I look forward to speaking with you, CB and others while we all navigate this rollercoaster. Just talking about it with people other than my wife/mom/family (who have all been absolutely amazing), who have been or are going through it themselves gives me a reassuring feeling.

Thanks again and take care.

Dean.

Dibden doll 3 days ago in reply to Nashy1982

Hi Dean

just keep a positive attitude and you will get through it ! And help your family cope !

You’ve got this ! Take care Tricia

Anglars 3 days ago

Hi Dean. Sorry to read about your experience at the beginning of your diagnosis which does not seem to have gone at all well. However I am glad that things have improved somewhat. Yes, it is difficult and daunting road especially when you first hear the news. Still, you are a young man and I am sure you will be able to get through it all. We are all here to support you. I am two years down the road from you (diagnosed Feb 23) but 40 years older. If you go down the Ivor Lewis route I can give further advice but there are other routes and those with the right experience will be able to help you with them perhaps more than I can. I wish you all the best.

Nashy1982 3 days ago in reply to Anglars

Hi Anglars

Thank you for your reply.

I shall definitely seek some advice from you if the Ivor Lewis is the path I'm given.

I’m very hopeful that things will go to plan, but also very aware that things can go wrong very quickly.

Like a lot of people here can probably attest, the waiting and uncertainty is excruciating. I’m trying to look at every step as exactly that, one step at a time and then move onto the next without getting bogged down too much with the whole process, as it’s very overwhelming to contemplate the treatment process as a whole.

I will get through this, I have a feeling. But I know it will be hard for me and my family/friends.

thank you again and I hope to speak to you all soon.

Dean.

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