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

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 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