Thank you so much Lauren , that is disgusting you had to chase nurses , no my dad has had zero so far , ive phoned the GP she says she is waiting for a response from the hospital regarding my dads MRI scan , a third world country we have become in my view . Cancer is no joke and these people should not have to be chased , im so sorry for your dad , i hope he responds to the chemo and he has plenty of time after with you . Im so angry at your story and mine . We should not have to chase nurses or specialists to save our parents should we ? X

we had the same trouble my dad was told on the day he was diagnosed which was Father’s Day that he would get an mri the following week, we got to Thursday the following week and not one person had called, we spent 11 days agonising and waiting without a phone call, and my mum called the nurse over and over and over my mum called the mri unit and they said a request hadn’t been put forward so she left a few voicemails with the nurse who called back very apologetic and then finally booked him in, the thing is these doctors and nurses are seeing it Day in day out and when it’s someone we love it’s urgent to us, we need to feel like something is being done and someone is doing something, I think once you pass through these early days and get into the cancer unit they are much more on top of it. But push as hard as you need to to get things moving x

Thank you very much , yes i will do that , i think we should not have to keep doing that , im saddened by your story , it is very distressing , you stay strong , im trying to stay strong too , my dad is 69 a healthy man never drank or smoked in his life , it has shocked me and the process even more . I am really hoping your dad and my dad get some reilef from this terrible disease . Thank you for all your advice , you have calmed me a bit . And my dad is fighting too . I hope your dad gets good results i really do .x

we shouldn’t have to chase anything but it will make you feel like you are being pro active, I have come to realise the ones that absolutely abuse their bodies all their lives seem to come off far better than the ones that have looked after themselves.

if your dad’s cancer just stays in the oesophagus then he can have the operation, I was desperate for my dad to have it.

we are at a point where we will try absolutely anything and we are getting the cannabis oil because anything is worth a shot.

keep me posted with how you get on with appointments and if you need to chat il be here, I feel the pain you are going through , talking here has helped me, also makes me see it’s not just my family in utter despair.

try and stay as positive as you can for now, I will have you in my prayers x

Thank you Lauren , you have helped me a lot , i am a tough Londoner but my dad is everything to me at 69 a young man in looks and attitude . Your right the people who do not abuse themselves get these revolting issues , so angry i am my dad and your dad and any person does not deserve this at all . Your dad i am sure is a great Dad , i told my dad about you and your dad , he was choked to hear your situation , yes thank you i will let you know our progress and thank you so much for your nice words , i prey my dad's cancer has not spread ? He has this cough , please god it is only like you say , it is the waiting that is killing me and him . Best of luck to you and your dad . Positive thoughts to you . X

Hi Lauren, my husband is having chemo every three weeks too, and has just had his third.  He is on something called EOX (Epirubicin, oxaplatin and capecitabine).  One of them is hard on the heart, he only has it because he is so young and fit (not sure which one!).  So far it has helped heaps tho- before treatment he could not eat lumps and was in agony every night after dinnner, couldn't lie down to sleep, had to sleep upright in an arm chair.  But now all that has gone and he feels great, can eat everthing again, lie down and has stopped all the pain killers. Apart from the effects of the chemo that knock him about he's doing well.  His blood tests are good too and liver function has almost returned to normal (Heaps of mets to liver too).  He has one week after chemo when he has no energy and feels really ill, one week where he's a bit better and then one good week before it all starts again!  I think your Dads is very similar to my husbands cancer which is also very aggressive, the tumour is at the junction of oesophagus and stomach and its called 'metastatic oesophageal adenocarcinoma to liver', stage 4.  We were told he had about 4 months without treatment, we were also told the time frame with treatment but I won't say unless you want me to tell you as not every one wants to know... they can't really tell for sure of course, just give you an average.  If they could hold it as it is indefinitely everything would be great, unfortunately they say the cancer 'gets wise' and grows back again.  I am really interested to follow how you Dad is, and what chemo he is on - and anyone else who is dealing with the same type of cancer - we are living in New Zealand but are british citizens and are trying to find out whether it is worth moving back to UK to get treatment- my rheumatologist reccommended we did as he says NZ is way behind the UK in treatment, particularly drug trials like immunotherapy.  Our oncologist strongly disagrees though!  Interesting to hear about the waiting around on the NHS people are experiencing!  We were told on 9 april that my husband had cancer that had gone to his liver, 3 weeks later we found out it was inoperable (looking back now we were quite naive and had no idea they couldn't fix him), 2 weeks later we were told it was also not curable with chemo and that treatment would be pallative, and the oncologist was quite blunt about how long he had.  Another week after that he started chemo - so 6 weeks from diagnosis to treatment starting.  In some ways gettting the bad news in bits that got worse and worse was less of a shock I guess than being told straight away how bad it was, but frustrating waiting when you know how sick he is and no one seems to be doing anything...The first few weeks I felt like my world had turned upside down, couldn't understand how other people were carrying on with their lives like normal- particularly hard the mums at school idly chatting and gossiping about 'nothing' as if nothing had changed! Really felt like I didn't belong anywhere.  Since then we have met others at a support group with cancer, but no one as young as my husband or with young children, their kids are all grown up.  One thing that has helped me to cope is looking into diet and nutrition that can help fight cancer, guess it makes me feel like I am doing something to provide foods that are meant to be 'cancer fighting' as otherwise you feel so helpless... Happy to share what I have found out re diet if you are interested, easier for me I guess tho as I am doing the cooking for him all the time!!

xx

Hi Plebbs,

Your oncologist is right - stay in Kiwi!

Seriously, I have exactly the same condition and EOX is the standard treatment in most Western countries. Very few NHS patients qualify for clinical trials and so far I've not seen any immunological treatments for adenocarcinoma of the oesophagus. 

The prognosis I was given initially (based on average statistics) proved to be very inaccurate. I came close to making a very bad decision because they were so grim but luckily I took a punt at the low percentage chance I was given of living with inoperable OC for more than five years. That was in 2013 and I'm still in reasonably good health - apart from still having stage 4 OC. 

Best wishes to everyone following this thread.

Dave

I am pleased that I had managed to help you in some way, my dad also had the cough but it is a symptom of the oesophagus cancer so try not to speculate too much at this point (hard I know) The waiting is the worst bit, please keep me up dated xx

Thank you so much Lauren , im suffering at night , im waking up every hour , i feel lost and broken .x