hello

[JE1983]

hi everyone I just thought I would introduce myself. My husband was diagnosed with stage 2 oesophageal cancer (junctional) last month, he just turned 44. He starts chemo next week and from our online research seems he is for a common treatment plan of 4 x FLOT, oesophagectomy, then 4 x FLOT. It’s been very scary and overwhelming but I am very glad I found this forum and have been reading up on all your posts. He is trying to stay offline after reading a lot initially which made it very difficult to cope. Wishing everyone well whatever bit of the journey you are on

[harveydylan]

Hi there. I too joined the community when my husband was diagnosed with OG last September. During our experience of the chemo and surgery, in March this year, I have found this forum to be so helpful.

My husband also found all the info very daunting and decided he only wanted any further details on a need to know basis!

I hope this post might be helpful to you and your husband. This is undoubtedly a major operation to be facing, apart from chemotherapy. Firstly what we both found to be a critical piece of information was the fact that being offered surgery was very positive in that something could be done to, potentially, get rid of the tumour completely.

And so to what my husband’s journey has been like both for him and myself, like you, as a carer.

The treatment and surgery has been dealt with in detail by others. I’d just like to focus on recovery. My husband is 77 and was very fit prior to his diagnosis. After the initial post op period, which was at times challenging, he slowly but steadily recovered to where he is now back swimming every day, walking ( albeit still having to pace himself), enjoying one of his passions - drumming! His appetite is good and he is eating almost normally and enjoying a few glasses of wine! He has, of course, had to make adjustments to his life but generally is in a place he never thought he would be when we got the diagnosis.

So I I’m sending many good wishes to you and your husband for your own journey. There’ll be ups and downs but, as you see by many posts, life can be good again. And remember to take care of yourself ☺️

[JE1983 in reply to harveydylan]

You have no idea how much this means to me I just welled up at the word swimming! My husband is very fit and active, he exercises 5 times a week but his greatest love is bodyboarding which is so important to him for stress relief. While bodyboarding might be too much it’s good to know that swimming can be a possibility as he thought that was all off the table. Thank you so much for sharing this and very best wishes to you and your husband x

[harveydylan in reply to JE1983]

You’re more than welcome and if there is anything else you’d like to ask please do. I know that others, as well as myself, will be there for you anytime. x

[CorfuSunseeker in reply to JE1983]

HiI had my op last October, after chemo/rad didn't quite zap it all. It took about 6 to 9 months before I started to get my old strength back in my upper body. Physio and light gym work helped. Like your husband I love bodybuilding and it didn't stop me in Cornwall this summer and I'm 66, so I'm sure he'll be back out there I'm the waves next year. All the best

[CorfuSunseeker in reply to CorfuSunseeker]

Body boarding.. not building ha ha

[JE1983 in reply to CorfuSunseeker]

This is so awesome!! Music to our ears! He learnt to bodyboard as a child in Cornwall and loved it ever since so we’d love to take a trip there. That will be on our to-do list! Thanks for sharing xx

[Tighan]

Hi there, I’m another carer - my husband (a fit 64) was diagnosed with stage 4 in September 22 and although the cancer had spread to nearby lymph nodes it hadn’t spread further and he too was offered FLOT, op, FLOT. We had to push for the op as the tumour was very large! We also count ourselves as very lucky.

My husband also didn’t want to read as much as I did and basically focused on reading only what he needed to know for the next step/next thing that was happening. I think this worked really well for him.

As harveydylan says there will be difficult times but there is light at the end of the tunnel. He can now eat pretty much anything, including the odd beer! He usually has an hour sleep every day but is active and getting on with life and can garden, cycle, chop wood etc.

Early on we realised this journey would be challenging and we made sure we had a strong network of family and friends who could step in when we felt down or were struggling. There were also times (like after being discharged from hospital) when we felt a bit left on our own as the professionals were less involved and at these times that support network was really important.

Wishing you and your husband all the best.

Jane

[JE1983 in reply to Tighan]

Wow thank you for this link I hadn’t seen it before very helpful and thank you for replying and sharing your experience. I’m so glad I posted it helps you feel less alone when everything is so scary and overwhelming. We do have great support around us thankfully. I’m trying to filter out all the info and just tell my husband what he needs to know. That’s so great to hear your husband can be active and eat well thank you so much x

[Tighan in reply to JE1983]

You’ll get amazing support on here, everyone is really really helpful. I’ve asked some specific questions as well as seeking reassurance when I’ve had a bit of a panic!! It’s so useful and I’ve learnt so much at each stage of this ‘journey’. If there’s anything you need to know, do just ask.

[Tighan]

You may have seen this on the Macmillan online community but posting here (hope that’s ok) just in case oesophagectomylife.co.uk/

[phil]

My Oesophagectomy was 18 years ago at the age of 56. It was a hell of a shock because like your husband I was very fit with no other health problems.Like others have said it is challenging and you have to make adjustments with sleeping position, eating little and often.

But be patient with your recovery don't rush things.

I'm still very active and exercise most days I've never put on weight after losing over 2 stone in weight after the operation. I spoke to my consultant about this and he said this is your new fighting weight and carry on being active and eating normally and that was good advise. The worst thing you can do is over eat because that causes Dumping and it will happen. It still happens to me sometimes but its part of the course and you know its your fault.

However its a great life and its not stopped me keeping fit and us travelling all round the world.

After your operation my recommendation is join Support group. Its good to talk to other patients to hear them talking about the challenges they experience. For 12 years I did run a Support group in Lancaster and that helped myself and members and careers and knowledge is power.

You will feel angry that this has happened to you but we are lucky to be able to have the operation that will cure us many don't have that choice.

Its a tough recovery but you'll do it and come out the other side

All the very best to you both

Phil

[JE1983 in reply to phil]

Thank you so much Phil this is so helpful. It’s really encouraging to hear that you are able to exercise so much and travel is really important to us too. Really hoping we can get a trip away next year to celebrate the end of the treatment and our 10 year wedding anniversary. Thanks again for your message

[sallym]

diagnosed, given3 yrs if I had an operation . In two weeks time I shall celebrate at the age of 89 having survived for 30yrs . I send my surgeon a thank you card. And remind him he got it wrong. I am out most days but no longer able to swim they shut the pool. Still not got the answer to all the ins and outs of this changed life. Enjoy the journey, best wishes Sally

[JE1983 in reply to sallym]

That’s amazing Sally! So good to hear I love that you send the surgeon a card! He underestimated you! Xx

[Molly14 in reply to sallym]

What an inspiration you are Sally ! I’m 9yrs post surgery and was given 20% - wishing you the very best xx

[Tanktank]

I’m sorry that you husband is suffering. He has what many on this forum have. I was stage 3+ and here I am six years later in reasonably good health. The chemo and surgery leave some issues but I lead a fairly normal life as a 68 year old. My strongest advice is to exercise. Walk walk walk and walk so that he is as fit as possible. Walking with headphones listening to music, podcasts or the radio will help with his physical and mental health during and after the treatment period.

His cancer has been caught early and he is due a well tried and tested curative protocol. Note this is a curative treatment because he has been diagnosed early.. With you at his side he’ll beat this just as I did with the help of my beautiful wife. Best wishes to you both.

[JE1983 in reply to Tanktank]

thank you you are so right we are incredibly lucky to be offered the surgery and this treatment. I’ve been reading him all these messages and it’s given him such a lift in his mood and hope for the future xx

[liz_crisp]

hi I was 48 a single mum when I was diagnosed 15 years ago. I had the same treatment but then it was normally an open op not keyhole which has helped with recovery times. Just remember to be kind to yourself and if you are tired stop and rest there is a lot of healing to do inside. But life still has quality and with a bit of thought and energy planing there is not alot you can't do eventually. I can eat anything but some foods are a bit like drinking and hangovers, there is a consequence to them. Good luck, it's not the nicest journey but it has its ups as well as downs, and you have to take it day by day as a patient. Cheers Lizzy

PS now is the time to put weight on, and get fit

[JE1983 in reply to liz_crisp]

Thanks so much Lizzy it’s great to hear you doing so well and able to eat anything now. I’m sure it will be trial and error post op to see what agrees with him and what doesn’t but we’ll get there xx

[Cavalier3]

Hi, I too was diagnosed at Stage 2. It was 2 days before my 51st birthday that will be 4 years in November… I had 5 weeks of chemotherapy every week and radiotherapy every day. Then open Ivor Lewis. Once the treatment is underway your husband will feel better. The initial diagnosis and waiting around is hard. I’m currently do a 2 week tour of South of France. I’ve travelled around America & Canada for a month, Thailand, Greece and Iceland. All since my surgery. So your love of travelling isn’t going to stop! Use the time before surgery to keep strong and gain some weight. The outcome of his treatment is curative. The first months are tough but he’s going to be fine. We’re all here for you along the way.

[JE1983 in reply to Cavalier3]

The waiting has been difficult. People say how quick we are being seen but it doesn’t feel quick! The staging seemed to take forever with CT scan then PET scan then laparoscopy and washings but we are going on Wednesday for the first FLOT treatment. We will definitely need a nice holiday to look forward to next year! Thank you so much really appreciate everyone’s supportive messages xx

[Molly14]

Hi there - I was 48 when diagnosed - it can all be very overwhelming and scary like you say and yes stay away from Google - my husband banned me from googling anything and it was the right thing to do as at the beginning I did Google and ended up in floods of tears - it’s a long journey and can be a real rollercoaster but stay strong, positive and try take it one day at a time as that way it’s easier to cope - recovery is a journey to but again day at a time - all the very best

[JE1983 in reply to Molly14]

thank you so much for your reply. You are right one day at a time is best for sure . We are feeling so much more positive reading these replies! Very grateful to have found this forum xx

[PopandMo]

hi there, I can completely understand your worry and trepidation. Yes it’s a hard journey, but I’m three years post op and although still underweight, am back to being pretty healthy. As for your husband’s body boarding, I am still doing Taekwondo-a 3rd Dan black belt at 64 so I’m sure he’ll get back to that! Ok, I tire easily and don’t have the same stamina but sport is definitely possible! Do be careful of reading too much on the internet-I drove myself insane with worry by doing that. Also , a lot of info is outdated and things have improved greatly. This forum is a better idea to share your concerns. Wishing your husband all the best. X

[JE1983 in reply to PopandMo]

That’s amazing you are still able to do the hobbies you love! My husband is determined he will get back to his activities post op even if he is tired. Can’t wait to see him back on his board where he belongs. Nothing brings him more happiness. Google info is so scary and it just seems like there is no one out there and you’re totally alone! I had searched instagram and Reddit and couldn’t find anyone at all. Thanks so much for your comment xx

[PopandMo in reply to JE1983]

You’re so welcome, do keep in touch with folks on here-there’s always great advice! X

[Tanktank]

I have commented below in detail but having read other replies I want to add something else.

I think it’s really important to know as much as you can about your illness and your treatment. Researching on the internet will raise questions but there are plenty of people you can approach for answers. Your dietician, Upper GI Specialist, Oncologist, Upper GI Nurse and of course MacMillan nurses (if you’re in UK).

Being an informed patient allows you to be an active and positive partner in your treatment.

Don’t be frightened of the illness. It is beatable.

[JE1983 in reply to Tanktank]

100%, it’s finding the right sources of information like those professionals you have mentioned and everyone we’ve met in hospital so far has been brilliant

[Tanktank in reply to JE1983]

You’re absolutely right but patience and persistence do pay off. The role of the partner is crucial particularly at face to face meetings with clinicians. Write out your questions beforehand. Best wishes.

[Guitarhero]

hi there

I don’t often respond to messages unless it’s from a partner or carer asking for support/ advise. my husband was diagnosed in Sept 2018 and went through the same treatment plan you mention and this site and many of the people on here who have messaged you ,were a support to me at the time, I still read the group updates/ chat on a Sunday. this group was a godsend to me and I would read so many similar stories to my husband who couldn’t face reading it like a I do. 6 years later,life is a little different but he is still here,out on his bike and living life . Reach out as you need to there is so much support on this page. X

[JE1983 in reply to Guitarhero]

Thank you so much I really appreciate your message. I’ve been blown away by the supportive messages it’s been incredible and such a huge boost for us in the waiting. First chemo is on Wednesday and we are feeling a lot more positive xx

[Guitarhero in reply to JE1983]

Best of luck for Wednesday.

[sperrygw]

prayers inner strength drive to be healthy again. Keep the faith as I will pray for you from Ohio

[JE1983 in reply to sperrygw]

Thank you so much I really appreciate that 🙏🏼xx

[LarryLamb69]

Hi , sorry to hear , never a great thing to be told you have (hubby in this case) It,s great he is fit at the start , he should try and maitain this even though likely not eating loads , as well as his weight , this action now will help further down the line. each person is different but weight loss was (still is) my biggest issue , aside from the cancer itself of course😄 ,being fit will aid his recovery post surgery , and maintanance of his weight will aid in him not going to low post Chemo and surgery as difficut to put back on longer term. I fitted into the "fit" bracket as a 52 military guy ,and doing the above meant I only spent 6 days in hospital in total , also making myself active post surgery as soon as I was able because I was fit aided this.

I broke the process down into blocks and this helped mentally for me as well - FLOT x 4 block one , ) and so on , as I found lookng at the end point at the start seemed daunting. (2 round of 4 FLOT after surgery was a tad tougher

But to cut it short , despite the not so great news with the right approach and the luck of no spread of the cancer, my journey has been 1 year from diagnosis to my current state which is the - long term recovery - I can eat what I want in the main .I am exercising to a light degree (cycling) , I go out for meals with my wife , tapas , small plates or 2 starters , weekends away , go to footy. I know I have been lucky and notr everybody recovers at the same rate , but there is light at the end of the treatment tunnel.

Genreral internet is not great as it chucks out some not great numbers in regards recovery , as it is listed a straight stripped back numbers , but does not take into account the continual improvement of recovery figures. For general info this site is really good as all from personal experience.

All the very best..

[JE1983 in reply to LarryLamb69]

thank you for this that’s very encouraging to hear about how short your hospital stay. We are doing the same now taking everything one step at a time, step one Wednesday is chemo number one. Glad to hear you are doing well and going out for meals and weekends away etc x

[Lab1]

hi there. Yes it can be a scary and hard journey. But every one will try and help. As we have all been there. It was 11 years ago that I had my op. Hope all goes well.

[JE1983 in reply to Lab1]

Thank you so much really appreciate that will be good to finally get treatment started x

[LarryLamb69]

Your welcome, had a thought after posting, he needs to be ready for his appetite to nose dive and food to taste weird..like being soaked in diesel for me!!..also takes gloves, and neck buff, as cold can hit even on first chemo as can be uncomfortable, I wore gloves if I needed to go into fridge at home, ice cold and even fridge things will likely be menu for a few days post coming of the pump at home ( if he has one)..take snacks as well, most take a small back pack, book, tablet, and so on..!!.hope it goes as well as it can👍

[JE1983 in reply to LarryLamb69]

Great tips thank you! Will pack all of those things to take with us. Yes he gets a 24 hour pump we go home with. I went to buy him loads of warm socks yesterday and I think he has a neck buff somewhere, great advice!x

[Deeedals]

there’s not much more I can add to this other than to trust the process! I’m 3 years on FLOT-op-FLOT. I’m well with modifications to my diet, the occasional blip usually related to something I shouldn’t have eaten or drank 🤣 but sometimes you just need a bit of fun !

Today I embark on the 62 mile dog walk challenge with my ever faithful companion Floki ! I’m 70 btw.

My brown cocker spanie

[JE1983 in reply to Deeedals]

Aww what a beautiful dog! Such a lovely wee face. The photo made us smile while we wait for pre chemo bloods and ECG! We both love animals. We have a cat who will cuddle with us while we no doubt watch a lot of tv and lie on the sofa over the next few months! Best of luck for your challenge thats amazing! 🏆xx