Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi Lee

Sorry to hear the news - I'll raise a glass tonight thinking of you all.

cheers

bfg

Dear Lee,

I am truly so very sorry to hear that your dad has lost his battle against  Oesopagael cancer. He fought so hard to stay with you and you and your family fought so hard to keep him here.  He was, I'm certain immensely proud of you. When you lose a parent you are so close to its a huge life changing event especially hard I feel if it's too soon. As you say folks on here understand how hard this diagnosis and the path can be even though everyones journey is unique but only you know the true loss you have suffered. It's early days so be kind to yourself.Be proud too Lee - your dad lives on in you and even though we've never met you are clearly a great guy. Take care Lee and please feel free to post if you need support from us or you just want a rant.

Take care and im sending a huge hug

Milly

Hi Andi

I'm just catching up as we have been away to Tenerife- if anyone had told me we'd be doing that a year ago I wouldn't have believed them!

In answer to your question my husband has been part of an 'Active recovery group' since he was diagnosed at the end of October 2020. It's through the NHS and was on Zoom. As you know he had a lot of complications following his Oesophagectomy and this resulted in him needing two further ops. The last one was on his left lung. He was able to use the spirometer which from what you've said you can't. Could anyone give you advice/exercises via zoom from the hospital? I can only suggest the obvious like gradually increasing  your walking which I'm sure you are trying to do. Have they said why you are struggling with your breathing? It may sound strange but breathing exercises for singing may help? I hope you get to see someone soon as it can be debilitating.
You have done so well Andi - an Oesophagectomy is a massive op without the'extras'. 

keeping the faith

Milly

Thank you Milly - hope you enjoyed Tenerife - that's just brilliant. Yes - I am trying to increase walking but the slightest incline and I'm struggling for breath - so frustrating. I think I'll just have to wait for the NHS appointment - of course I realise how busy they are - I keep doing breathing exercises - fingers crossed I'll be seen soon

Keep up with the recovery - gives me so much inspiration- just the thought of going to Tenerife 

Andi xxx

Hi All,

Sorry for not posting on here for a while - this thread has helped a number of people over the months, and I've been reluctant to post not so good news.

Earlier this year, while checking out "something else" - a CT scan showed widespread peritoneal metastases.  I know that there is no point asking you not to google it - but needless to say its not something that was expected.

I'll be reaching out on another thread for information - so thought I'd better tell you lot first.

My options are currently limited to Irinotecan - but this buys maybe 2 - 3 months according to the oncologist with all of the nasty side affects that go with it during treatment.

I'm currently exploring trials abroad and have also been offered PIPAC treatment abroad (something not available in the UK yet).

So basically, the rollercoaster of a journey has now hit an industrial fog machine and a long dark tunnel.

Happy to respond to any questions or PM me if needed.

Cheers

bfg

HI BFG,

Firstly, no apologies needed. You have stunned me and it's hard to know what to say. What I can say though is you are a fighter and you are doing your research into the options available to you on a wider scale. I hope someone via your new thread can offer you some useful and positive  advice. You have come through so much and such a long way. I'm sending a huge hug which as a BFG has got to be a big one!

Still keeping the faith for you BFG

Milly

This seems an inadequate reply, we have formed such a tight bond on this forum and we are here for you good and bad news and everything in between. 

Hi BFG

So very sorry - but you are such a fighter, and keep strong and fighting - which you definitely will. You are in my thoughts - please stay in touch

Andi xx

Hi Milly and Andi,

Many thanks for your support - and virtual hugs, gratefully received.

I'll keep you in the loop so to speak.  I finally retired 7 weeks ago and whilst this isn't exactly what I had in mind, it's keeping me busy.

cheers

bfg

Hi all, sorry if am replying rather than starting a question, don't seem to have the hang of it or my brain is frazzled !!

just a couple of questions or advise really, 

shaun started his chemo last Thursday, we were expecting tough but jeez, IV chemo in the morning followed by 14 days tablets Am and Pm, 2 days in admitted to hospital as uncontrollable vomiting, kept in over night . 24 hrs of no tablets then to start again, 6hrs after taking vomiting again, crisis nurse came out and I had the Oncologist on the phone at the same time, nurse wanted to bout a driver in his arm for anti sickness but doctor refused, saying he can handle it he's young and strong. Doctor told him to stop the tablets and resume again this morning.

I know the side effects are awful but I guess we wasn't expecting this and I know everyone is different but, do the side effects plateau he has been asleep for nearly a week only really getting of the sofa or bed because he feels he has to, has lost much more weight,.

I am as shattered as he is and we are both like zombies ‍♀️‍♀️

Hi Manfyh,

No problems at all on how you access the forum - we all tend to use reply so we stay on this link. 

I do feel for you both. It's hard to give direct advice on this as the treatment is different to what my husband received plus everyone reacts differently. This is something we found hard as when you ask about reaction to chemo that is what the nurses etc say because it's true. As humans we crave certainty even in very uncertain situations.
What I will say is you've done the right thing by  contacting the rapid response team. There are obviously differences of opinion from the healthcare professionals but I suggest if he is that poorly with it ask if you could have a face to face appointment with the oncologist. 

My husband had FLOT and found around days 4 - 10 after chemo the hardest but the anti sickness tablets did work so whilst at times  he felt sick - he wasn't physically sick. Others on here have had different reactions. 
 

Im sorry I can't be of more help but I hope it does help that we are a caring bunch on here and although none of us are medically trained we all have been on this journey you don't want to be on  albeit not exactly the same one. 
 

keeping the faith (this is a mantra from Hilts which I feel compelled to say)

Milly

Hi Manfyh,

No problems at all on how you access the forum - we all tend to use reply so we stay on this link. 

I do feel for you both. It's hard to give direct advice on this as the treatment is different to what my husband received plus everyone reacts differently. This is something we found hard as when you ask about reaction to chemo that is what the nurses etc say because it's true. As humans we crave certainty even in very uncertain situations.
What I will say is you've done the right thing by  contacting the rapid response team. There are obviously differences of opinion from the healthcare professionals but I suggest if he is that poorly with it ask if you could have a face to face appointment with the oncologist. 

My husband had FLOT and found around days 4 - 10 after chemo the hardest but the anti sickness tablets did work so whilst at times  he felt sick - he wasn't physically sick. Others on here have had different reactions. 
 

Im sorry I can't be of more help but I hope it does help that we are a caring bunch on here and although none of us are medically trained we all have been on this journey you don't want to be on  albeit not exactly the same one. 
 

keeping the faith (this is a mantra from Hilts which I feel compelled to say)

Milly

Hi Guys,

I'm new here but have found this chat very interesting and reassuring indeed. I was wondering if anyone has had a similar experience as myself. My dad was diagnosed back in November with oesophageal cancer, had 4 rounds of FLOT and had his operation last Thursday. Unfortunately he struggled a little with his breathing and developed a lung infection therefore had to put him on ventilators. They tried a few times to get him out of his coma in order to start breathing again but was unsuccessful as his body is just not ready. Also, his bp has gone sky high whilst being under sedation which we don't know why. He's now had a tracheostomy done and we hope for him to wake soon. This journey has been a rollercoaster.
 

The doctors do say he is young and healthy and we still have hope but it's very hard and overwhelming x

Hi Poppycake10

Sorry to hear about your dad - I had my op on 29 September last year - then had complications and was in a coma, then a tracheotomy for nearly 8 weeks - I can home after 10 weeks in early December and unfortunately could not have my post op chemo. I am now well on the road to recovery - I still get very breathless but just have to adapt and take things much slower - he will be fine but it will just take longer. 

On another note - all you post ops??  Do you still have to sleep on your back and sitting up a little or can you now lay down properly and sleep on your side??  I'm still sitting up a little - not sure if this is for ever??

Hope you are all enjoying this lovely sunny Easter

Andi xxx

Welcome Poppycake10 

This journey can have many twists and turns. I'm pleased Andi has replied to you as I think she is has experienced similar to your dad and hopefully it will give you encouragement that the situation can improve.

If you read my posts you will see my husband had life threatening complications after his op ion 4th May 2021 resulting in two further emergency operations. He was ventilated after his second emergency op but that was only for 24 hours. He developed pneumonia, pleural effusion which became infected resulting in Pleural Empyema. He was in hospital for 5 weeks - home for 3 then back in for the last emergency op on his left lung at a different hospital. In again for 5 days. After all this he was just able to have the post  op FLOT but don't think about that at this point as not everyone has it. 

My suggestions are take it hour by hour and day by day. Ask questions if you feel you need to. The NHS staff are brilliant and will do everything to get your dad back on his feet. This is a mahusive operation but people do come through it and out the other side. We have just come back from Tenerife which this time last year I would never have believed possible. Hilts who is on this forum is currently in the USA I think!

Andi -,my husband is mainly sleeping on his back but can now sleep on his side but still raised and not fully on his side. The electric bed has been so worth buying but the wedge pillow is good for when we go away. He has an inflatable one for when we went on flight. Keep going Andi you are doing really well .

Everyone I hope you are chugging along on your respective paths. 
 

Still Keeping the faith for everyone and sending special hugs too

Milly 

Hi Milly 

Thank you for that - you said earlier about the last inflatable wedge pillow - which I bought - it's great when I visit friends. Gives me hope that me day I will be able to sleep 'normally' again 

Andi xxx

Hi Andi,

Pleased the inflatable wedge pillow is good. I should have said my husband was told by the surgeon that he won't be able to lie flat again.

One thing that has surprised me though is that he can do front crawl and backstroke which I  didn't think he'd be able to do . 
 

keeping the faith 

Milly

Hi Milly

That's amazing - I have to be honest and say I'm still a bit scared to swim - but that's very encouraging. Yes - my surgeon said I'd never lie flat again but I do 'slip' down at times. Maybe I should consider the bed!!

Andi xx

Hi Andi,

I'm glad to hear that you're on the road to recovery! If you don't mind me asking, how long were you in the coma for? My dad has been in his coma for a week now :(, and has had his tracheotomy for a day but is still under ventilation and not yet woken due to his body still 'not being ready' and high blood pressure. 
 

Hi Milly,

Thankyou for your reassurance I just hope he pulls through as he's only young (early 50s) and never had any health issues previously apart from his Cancer :/. Weeks are feeling like months for my family and I, never in a million years we thought we would experience something like this but we are still hopeful!

Best wishes,

Poppycake10 x

Poppycaje10 it is overwhelming.My husband was fit and active when he was diagnosed at 62.

 Without going into detail we have experienced trauma in the past but it still seems surreal in a very bad way. However the body is amazing and can recover with the expertise, dedication and care of our wonderful NHS. ICU are fantastic and your dad will be monitored very closely. I wasn't allowed to go in when my husband suddenly became critically ill with internal bleeding. It was truly awful. I pleaded and was allowed in ICU twice during the two weeks he was in there and twice whilst he was in step down. Then I was allowed to take him outside in a wheelchair with his oxygen tank when he eventually got onto a ward. He was told by a consultant after a ultrasound on his lung it was unlikely he'd ever be able to go up a hill again and wouldn't be walking up the high street by Christmas. This would have been true if the surgeon hadn't persisted and got him to see another respiratory surgeon who performed the last op as a planned emergency. He had a total of 10 drain scars plus all the other ones. Fortunately the last op on his left lung was keyhole so the recovery was quicker. 

We climbed up the shorter route of Mam Tor in January and also returned to Goyt Valley just shy of a year when we went before his Oesophagectomy. 
Can you see your dad? If so I'm sure you are talking to him and your encouragement will help him. He is young and it sounds like he was fit with no other issues before this devastating diagnosis, this will help him enormously. Google is not your friend with this type of cancer. 
As I said before take it hour by hour. I called it 'walking the line' not looking too far back or forward- easier said than done I know but the only way at this time. Ask anything you want on here or just have a rant. There are different journeys and outcomes on here but remember your dad is unique.

You have taken a huge step joining this forum - I read this chat for quite a while before I joined - now it's almost addictive! I'm trying to limit how often I check in but please feel free to ask anything/anytime.

keeping the faith for everyone 

Milly

Hi Poppycake

I was in a coma for about 4 days before they did the tracheotomy - and 5 days after - I still don't really know why and my daughters don't want to talk about it. As you know - it's very stressful. I think the worst thing was waking up to having the tracheotomy - and not being able to speak (I'm a chatterbox). It was even worse for me as I'd had one 50 years earlier. Your dad will need a lot of support when he's brought round - the ICU staff are amazing but hopefully visitors are allowed a bit more now.  I'm sure he will be fine xx

Andi xx

We've just received the news that his infection (pneumonia) in his lungs has gotten worse and filling around 70-80% of his lungs, they've now changed his antibiotics as the previous one didn't seem to be working. Is there still light at the end of the tunnel? Can the pneumonia still be treated and cured? 
My family and I are taking it day by day and trusting the doctors as they still have hope. Doctors did say he is going to be in hospital for a while as it's a long road to recovery ️‍ 

Still hopeful,

poppycake10