Hello Manfyh

I'm sorry to hear about your husband's diagnosis and the delays that you've experienced since he returned home to the UK. It's understandable that you're feeling anxious about the wait. 

I'd suggest getting in touch with the hospital PALS team if you've still not heard anything. It's their role to provide a point of contact for patients and their families and to help resolve concerns or problems. 

It's also worth getting in touch with your husband's GP and letting them know about the delays that you're experiencing. It may be that they're able to give you some information about which Consultant is responsible for your husband's care or which team he's been referred to. 

If you'd like to talk things through with one of our nurses you're welcome to contact them for some advice and support. They're available Monday to Friday 9 am to 5 pm on 0808 800 4040 and I'm sure they will be happy to help in any way they can. 

I'm also going to suggest that you might want to have a read through some of the posts on this thread and maybe consider posting a reply there to introduce yourself. The members on that thread all have experience with/of oesophageal cancer and are a very supportive and knowledgeable group. 

I do hope that things start moving quickly for you both soon. 

Keep in touch and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator  

Hi Manfyh, 

Your post caught my eye- ANYTHING mentioning Oesophageal gets me 'interested'- WHY? My then 56 yr old husband diagnosed with it July 2020. I say THEN 56, not because he's popped off, but because he is now 57 and 1year since completion of treatment and disease free ( big clapping emioji's) for now ( I always add that, not to tempt fate!)

The reason I post is that I know EXACTLY, how you are feeling right now, all human emotions experienced in the same hour, let alone day. Utter frustration and wanting answers - like NOW!!
 

Jenn moderator gives you absolute solid advice, your husband must be registered with a GP , and if your husband is already diagnosed then he will have gone through that process with a consultant and team doing the work- our oesophageal team nurses were an abosolute godsend through it all. Usually referred to as a 'multidisciplinary team'

I have to say though, 4 weeks isn't that long - although I know all to well that you want it to start like RIGHT NOW. we started chemo after 5 /6 weeks, but they were very 'quiet' due to covid (every cloud n'all). Most of the people I have 'chatted' with on here were 8-12 weeks.

THE THING about  oesophageal cancer is that it is very complicated and they take a while to get to the staging decision, do every investigation almost known to man! From that then comes the treatment plan- and there is a Heinz variety of them depending on staging.

I could go on and on and on.............but I won't.

Start with his GP & good luck- ask anything you want.

hilts

Thankyou, just having a response means the world to me right now, we have no consultant only doctors names we think it might be as no one is telling us anything.

I got in from work today and he was just lying on the sofa, barely able to lift his head, he hadn't been able to keep any liquid down, not even water, I called everyone under the sun, GP, 111, (oncology, GI nurses (all unavailable), I was told to call an ambulance as he needs fluids, stubborn buggar refused. 
he had taken himself to A n E earlier in the day and they said we have a bout of Norvo virus, we should admit you but best you be treated at home, packed him of with omeprazole and some anti sickness tablets, he can't even swallow water!

All my phoning must have caused a problem as next min the GI nurse is calling to say he needs admitting, so I drive him to hospital where hopefully he gets some fluids and flipping foid as he is literally starving xx

sorry for the rant, I just didn't know who where or what to do xxx

Hi Manfyh

I'm so glad to hear that you've finally been able to get some support for him. Let's hope now that he's been admitted that this will be the start of things moving in the right direction. 

I did reply to your previous post over the weekend and in that reply gave a link to another thread on the forum with lots of members who have experience of oesophageal cancer. Do have a look and introduce yourself to them when you feel able to. They're a lovely supportive group of people who have lots of experience and expertise from a patient perspective. I can see that [@Hilts]‍ has already posted a message on this thread :happy:

Keep in touch Manfyh. Happy to lend an ear for you to rant into if needed. 

Best wishes, 
Jenn
Cancer Chat moderator 

BIG CLAPPING EMOJI's

What a shower of the proverbial, that you had to go to those lengths and they wonder why A&E is busy. If other did their jobs properly then you wouldn't have had to do that.Well done though.He is now in the correct place. Clueless doesn't ever come close- can't swallow ( world expert on that) and they give him omeprazole!!!!!!!! - where did they suggest he shoves it!!!!!!!! and since when is omeprazole used to treat said 'norovirus', I am feeling angry for you xx Noroviurs!!!!! , next they'll say it's covid!!! Honestly, norovirus is spectacular and graces both ends and they don't seem to realise there ARE actually OTHER conditions in this world arrrrgg. Not that I am ranting now, nope never (: You'll also see my very early post, when in the same position as you- nope, no ranting whatsoever........

As for you  ranting- good, keep at it. That is what this board is for. Me personally, I have never ranted!,! LOL- sorry , I think I'm funny!- if you tune into our other board, you'll see that none of us ever rant, at all ever ! (:

As for stubborn, mmmmm- join the 'wives club' oh yes, I truly know how you feel.

hilts x

PS- moderator Jenn- how did you get an emoji on here !! I have been trying for years, as have others and FAILED each time, so we all now just put the words into brackets! Although my kids tell me emoji are 'sooooo  last season' hahahah tough, I like them x

Hi, just been updated with his diagnosis today, PET scan showed it has spread to lymph nodes and the hip but the liver and organs are clear, so no operation, palliative only, they have said 5/6 months of chemo to slow the spread down hopefully, now I am numb and no idea what to think or feel xx

Ah Manfyh, 

So moving on at least now you have the news you didn't want. We , on the other board,refer to ourselves as the 'oesophageal cancer club'- once I knew, the head chaos calmed down a tad, not much, but at least something to focus on. It will be the strangest emotional ride you've maybe have ever been on, but do remember it is okay NOT to be okay.

Over time, you will hear the most 'helpful' things , like 'how are you coping' or 'stay strong' arrrg, maybe just my linear take on life but what do they actually feel and look like . If you want to cry, rant and rave- do it.

BUT- please know that palliative DOES NOT mean terminal. It means 'treatment of a chronic condition. While we are on the palliative path, there are more than a few on the other board that are 'palliative' one that is 10 years into his palliative and another who is no longer palliative ........ but disease free following a load of immunotherapy after a load of chemo!!yes , of course there are some with not so good outcomes, but we refer to it as the rollercoaster, emotionally, physically and everything in between.

HOspital will hopefully sort out his 'nutrition' while he's in.Maybe a feeding tube, just to get 'stuff' in him. Trust me when I say the guys love it!! NOT. The space in the oesophagus won't 'free up' until he has had a few blasts of chemo- mine took 3 blasts (cycles) before his swallow returned to something nearing normal- that stopped  the vomiting/gagging and enabled him to eat proper food.

Whatever you feel right now it's okay- ask away - nothing off limits. None of us are medics, just experts in the 'lived experience' (urg) living the dream!

Take care

Hilts

Seriously thankyou, I have had a million, "hope you are ok's" currently sitting next to him on a ward as they are putting a stent in tmrw to allow him to at least have some food. Question tho, he is coughing up frothy liquid, what is that as no water is staying down x

Hi Hilts,

it's Shaun, Manfyh (Sam's Hubby) here. Sam has shown me all that you have chatted about. I must admit it's given a lift to read your words. If we hadn't had your advise I would still be thinking the worst.

Once I am out of hospital (tomorrow) I'll join the other board.

Thanks again for pulling me off the ceiling and helping Sam understand more. 
 

Shaun