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,all,

Thanks Hilts and thanks Lee. It really does help having support frim people who understand. I hope you enjoyed the golf with your dad Lee.

I'll keep you all posted.. 
 

Milly

 

Hi all,

A quick update to say my husband has moved out of ICU to the step down ward. The reason for  being a little longer in ICU was due to some 'gunge' left behind from pneumonia in 1994! This has been cleared but they monitored him in ICU. Seems so strange that I can't visit but I have to say he is constantly being assessed/seeing various professional so in between he needs his rest. So it's probably better for him as a patient and easier for the staff! 
 

Some good news for him today was the football team he supports and is a season ticket holder (when you could go) managed to hold on and stay in the championship! 

He has been a walk Hilts. Keeping the faith.

Milly

Good news Milly. 

We are seeing the oncologist for the scan results this week-its that time now where we are not sleeping and worrying constantly! My Dad feels good and strong in himself but the fact that he cannot swallow solid foods again is what's scaring us. We have to keep positive and hope for good news. 

Lee

Hi Lee,

As Hilts says worrying is natural. We know in our heads it won't change anything but it's your dad and it's very hard. A positive is that he feels well and strong. The waiting is very difficult I can only advocate what Hilts said to me - distraction helps. Do things with your family or on your own.

Keeping the faith. Thanks Hilts.

Milly 
 

Great news about hubby Milly. ICU was pretty intense at the time, so I bet he's relieved to be back on the ward. Drains will start to be removed and then it's on to liquids, followed by minced and moist! I'm a WBA fan btw, so will end up watching them play your husbands team next season - probably. 

Lee - thinking of you.  Nothing worse than the waiting, but feeling good and strong is definitely a plus. 

Bfg

Thanks bfg and Milly 

Lee

Hi Folks, 

yep, the worrying part.........

I am a world expert in worry having been born like it. (: 

It is really a strange old thing. Mine usually works like this = boil up a load of spaghetti, Chuck it in washing machine and put it on a spin cycle (:. Don't really do that, but in the words of the 'lovable' Francis Begbie 'Picture the scene' - it is a metaphor ( not used that word since school) for the mess ones head is in..

Another way my head works, is when I have absolutely nothing to worry about, my naughty brain, will find something, anything , the more bonkers the better. Over all this whole episode I have actually, probably ,for the first time in my life had something real to worry about and my head has been behaving better than usual.

Sure, it has not been fun sometimes, but for once I found something to help and that really was distraction. It has only taken me 52 years (:

The absolute worst bit, was the start, like where you are now Lee. That really was a spaghetti job. Once we had the plan it got better. Not perfect, but less fizzy.

I think we all think for some reason that anxiety and worry is a 'weakness' , that it is bad.  We try and hide it and 'put a brave face on ' for the world around us, I think that is primarily a result of what we are sold as 'good' & 'normal' by media etc. I am now old enough and couldn't really care less what other people think of me , so I feel free. But, I still hang on to it around family, don't ask, I have no idea(:

So, my ' in depth anxiety analysis strikes again! Lee, you are completely normal but the way it makes you feel is utterly horrible.  It will move on, but for now just try and accept that you are in a pants position at the mo- and it is okay to not be okay.

God, I can blather on.....sorry, anyway, 

Keep the faith and come back and share

Hilts

PS the keep the faith thingy I use is not religious! Just thought I'd clarify that..... but a saying from my distant youth. Scooter runs, Northern Soul, Ska music scene, etc etc etc (:you know, disaffected youth stuff and we'd all stick together etc

Thanks Hilts, i'll report back when I know something more.

Thanks

Lee

Hi folks, not so good news today we have just returned from our meeting with the oncologist who said the there have been increased volume in my Dad's lymph nodes.  He said there hasn't been much change since the last scan but enough to change our course of treatment.  

As mentioned previously-my Dad is on a immunotherapy clinical trial (or placebo), and the oncologist has said he wants to cancel that and go for another round of chemotherapy.  

The oncologist said the positive news is that the scans/blood tests have shown it hasn't spread to any organs other than the lymph nodes (which we knew when first diagnosed).

My Dad's swallowing has got really bad over last few weeks again (after improving whilst on the 6 sessions of chemotherapy) - the oncologist again said he hopes the swallowing to improve once chemotherapy resumes. 

Even though it's not great news,  we are taking the positive out of the meeting and hoping the next round of chemotherapy will have positive results.  

Waiting to see the oncologist with our results,  is something I'll never forget and i guess everyone on here is in full agreement it is a horrible feeling- spaghetti in the washing machine lol!

We just now move to the next stage of this awful journey 

Lee

Hi Lee, 

yep, I call the whole thing ' the rollercoaster that just keeps coasting'

i have to say his medics sound like they are really 'on it'.  The Docs sound like they wants to nuke what is there, and if lymph node look like they are up to no good, murder them before they get any ideas, rather than hanging about to see if the trial takes effect..... or not!

 The  really 'good' part of yesterday is that ithe cancer has NOT decided to set up home elsewhere!  So your Dad responded to chemo, so get the thing under control again, then go from there. It maybe a case of nuking it every few months just to make sure it behaves it self. Watching a loved one struggling to eat/drink anything without choking is SO distressing, for the person and the watcher. It got to the point here that he didn't want to eat at the table at mealtimes 'just in case' and said A LOT that he'd eaten 'earlier' ye right, we both knew that wasn't true. After 2 nd chemo, really improved.

I feel your emotion regarding waiting to go in for the verdict! Hideous. You hope that someone has messed up and got it all wrong. That ,in my experience was the worst part!! But you now know what you are dealing with and have a plan, so maybe your head space will calm down, if it doesn't that is okay too.

One thing is for sure- get out there and have a few rounds of golf or whatever else makes the both of you smile.

Anyhows Lee, keep chatting if you find it helps, none of us can make it 'go away', but we all sure know how it feels to be in this situation.

Best wishes

Hilts

Hi Lee, 

yep, I call the whole thing ' the rollercoaster that just keeps coasting'

i have to say his medics sound like they are really 'on it'.  The Docs sound like they wants to nuke what is there, and if lymph node look like they are up to no good, murder them before they get any ideas, rather than hanging about to see if the trial takes effect..... or not!

 The  really 'good' part of yesterday is that ithe cancer has NOT decided to set up home elsewhere!  So your Dad responded to chemo, so get the thing under control again, then go from there. It maybe a case of nuking it every few months just to make sure it behaves it self. Watching a loved one struggling to eat/drink anything without choking is SO distressing, for the person and the watcher. It got to the point here that he didn't want to eat at the table at mealtimes 'just in case' and said A LOT that he'd eaten 'earlier' ye right, we both knew that wasn't true. After 2 nd chemo, really improved.

I feel your emotion regarding waiting to go in for the verdict! Hideous. You hope that someone has messed up and got it all wrong. That ,in my experience was the worst part!! But you now know what you are dealing with and have a plan, so maybe your head space will calm down, if it doesn't that is okay too.

One thing is for sure- get out there and have a few rounds of golf or whatever else makes the both of you smile.

Anyhows Lee, keep chatting if you find it helps, none of us can make it 'go away', but we all sure know how it feels to be in this situation.

Best wishes

Hilts

Thanks for your words of encouragement Hilts, its reassuring. 

Thanks 

Lee

Hi Everyone,

This thread is a busy one lots of rollercoaster rides, since my discharge from hospital i have been on 5 lots of antibiotics, 2 unplanned stays in hospital due to infections, moving on now have had my OLD PICC line(installed on the 22nd Feb) removed due to suspected infection every time it was getting flushed!!!.

I had another meeting with my Oncologist last Tuesday and was offered the FLOT regime again was warned the tingling in the fingers could become pernament but the benefits of the treatment i think outweight the possible outcome of the Chemo, new PICC  line installed last Thursday and Chemo round 2 started on Friday, today is the first without the steroids and the brick wall of no energy is looming also don`t know if its only me but seem to get constipated during these regimes.

Hi Ray,

Good to hear you are starting the second round (as daft as it sounds encouraging poisin!). My father had a feeding tube inserted in his belly before his first round of chemotherapy and even though he never used it (other that to wash it daily), he managed to get it infected and now has to have daily injections in his stomach to prevent and cloting as a result-he hasn't had any issues with the picc line.

My Dad also complains of a pretty permanent tingling in his hands and toes since the first round of chemo - the oncologist said it is a normal side effect of chemo.

My Dad starts his second round of chemotherapy this Tuesday-he is feeling quite good at the moment but is also expecting the brick wall of no energy, sickness, loss of appetite...I guess we are all experiencing very similar felings. My Dad hasn't been constipated but does suffer from diarrhea on occasions. 

Good luch with round 2

Lee

Hi RayB..... you are back yaaay.

i for once in my life have ,been quiet for a while as there is nothing going on !!!
He went back to work last Monday and did okay- get this- he met his mate down the pub (garden) last Friday night and drank 4 pint!!! - so glad he's been saved, so I can kill him myself!. He reckons an 'experiment' to see if he could still 'hold his beer' (:. Well , before all his treatment, he used to stop at 3 as regurg. Would have been a problem......no longer (: he was most pleased with the result!!

PICC lines are tricky old things. But they are better than the cannula alternative. Essentially the body sees them as an 'invader' foreign body, so tries all sorts to get rid of them, Husbands really started playing up towards the end, but it held out, but the whole infection, clotting thing are very standard.

Constipation- that old chestnut (forgive the image !). FLOT contains a platinum, which is a heavy metal- revolting stuff, same one as causes the tingling (nerve damage) causes horrendous constipation. Only solution for him was the old senakot. Once had 'been' his hideous exhaustion, nausea etc lifted. He really notice the difference after they cancelled his last 2 platinums (anaphylaxis)

The tingling and coldness. Husbands continues to improve. Still tingling , but getting less and less. Hair is now really growing back too.

Remember this - YOU have 'only' FOUR weeks to go - then YOU ARE DONE after 8-9 months.

Lee- the diarrhoea -same applies, the body is trying to get rid of the 'toxin' the chemo, any which way it can. So all sorts of 'strange effects'

Hi all

Apilogies for not posting but we have had a very difficult time.  My husband was making fantastic progress despite the extra time in ICU due to an extra drain,They even did things slightly differently and he had a small amount of water on day s 3, 4,5 and tea, soup and ice cream on Monday. All good. He was on step down when I rang on Tuesday morning to be told he'd literally just taken a turn for the worse and was very unstable anc in a very dangerous position.
 

I don't intend to frighten anyone on here and he is currently back in ICU and making progress. Everyone says what has happened is highly unusual and has never happened before. They couldn't stabilise him so he had to go back to theatre and be opened up again. This time open surgery on his abdomen. They found he had internal bleeding on his lung which they believe was from a blood vessel which had been caught when the last drain was removed. It was a slow overnight leak which had pooled.He felt fine until he got out of bed then it all kicked off. They saved his life. 
 

He was ventilated to give his body a rest. The positive is that the original surgery was good. In effect he has had major surgery twice a week apart. Everyone keeps saying how well he is doing. The ICU doctor said he even scared the ICU team which isn't easy.

As you can imagine it has been extremely hard as no visiting has been allowed. I pleaded my case and I've been allowed in twice for an hour. He is in a side room and he  has sat out in a chair.. yesterday they got him to stand. He is so brave and determined.

I felt I couldn't post anything and he still has a long way to go. I'm hoping to speak the the surgeon today. So many doctors were coming to see him before as you will know but even more now! All the staff who looked after him originally keep popping in to see him.

I will keep you posted and I hope it's good news.

RayB nice to hear from you and well done for continuing to progress despite your setbacks. 
 

Lee I hope your dad tolerates the FLOT.

Hilts your husband is doing really well which is good to hear.

Keeping the faith.

Milly

Hi Milly,  it sounds like you've both had a massive shock, but what we have all been through...it feels like shocks have become the norm!

It sounds more promising now than a few days ago...I hope he keeps improving-good luck.

Lee

Oh Milly - what a horrendous time you've had. Well done on getting in to see him though, our hospital was like Fort Knox and the ward I was on was on an even higher level of covid protection than the rest of the hospital.  Looks like he is well on the mend and should be out of ICU soon. 

Ray - good luck with the brick wall :-).  I've got my 2nd cycle of the final four this Thursday.  I take psyillium husk as added fibre in my diet - I find taking in high calory food in small amounts means my fibre intake isn't what it should be.  The anti-nausea medication also causes constipation and the nurses usually give out senna or something else to help things move along which I took only when taking the anti-nausea tablets.

Lee - those daily injections are a pain - I had to take them when my first PICC line generated a DVT after a week.  Hope your dad is ok on the FLOT - it affects different people in so many different ways.

Hilts - your hubby is still my inspiration, and having 4 pints of beer is certainly a challange I am aspiring to once this FLOT is out the way and things have settled down.  

Oh Blimey Millie!
what a nightmare, what can I say!
BUT- they have fixed it. I wonder if these sort of events are not more common that we realise. When you consider the MASSIVNESS(queens English ?) of the surgery and the billions of tiny capillaries, veins, bits and pieces in there - I suspect they are far more common. Just to cheer everybody up Oesophagectomy has a 5% mortality rate even before they operate, that is how major it is. Surgeon told us that- something we really 'needed to know'

They guy opposite my husband when he was in ,went down like a sack of spuds one morning. Some bleed, but like your guy- all sorted.

Please don't EVER refrain from posting if you need to, that is the whole point of our club, in it for the good and the bad.

SO Millie, they sorted it. If he is out in the chair, even more brill, brill. Trust me , if he was looking at all 'dodgy' he would be nowhere near it !
He is probably being seen by the whole hospital staff- he is probably famous (:

That 'phone call' sounds horrendous you must have a SERIOUS wobble- which I think , given the circumstances was compulsory!
Now that his leaks and lumps  have been sorted, he will be on a very quick discharge programme I would imagine.

Many on here have had stumbling blocks on the way, which is no surprise given the extent of the surgery.

Do remember that he is now 3/4 of the way done 'just' recovery from op,the final FLOT and job done?
Husband is 5 months post op and 9 weeks post his last chemo and last week I think I would say 'normal' (ish). You'll get there.

take care and keep the faith (:

Hilts

Hi all,

Thanks for your understanding and support. Yes maybe it has happened somewhere before. By all accounts not where he is, everyone says the same. One nurse with 20 years experience said he'd seen lots of different things but never known anyone have to go through the op again, although as I said the actual surgery was good. But obviously he's had all the drains, monitors and general parafinalia again! He has had his first cuppa today! Surgeon is going to remove the final drain tomorrow morning.
 

He had so much fluid on him because they didn't know what was wrong so they pumped him with everything just to keep him alive before surgery. Over 5 litres have been got off using Frusemide which has helped him to clear his lungs. Still not lost his sense of humour. When I asked what his pain level was he replied "4 and 3 of that is my bum!" Flat bum from sitting. Good job he got fit beforehand. Just got to hope all keeps going well and he can continue to move forwards.

It was horrendous being at home phone call 9.00 am another at 11 am and then at 1.30 pm to say he'd gone to theatre. Fortunately our two sons work fairly locally so they came home. Anyway as you say they sorted him. Just hope all goes well tomorrow and from then onwards. 
 

Bfg hope FLOT continues to go as well as it can do.

Yes keeping the faith Hilts!

Milly
 

Hi all,

Some good news! Yesterday the last chest drain was removed and so far, so good. Kev is still in ICU but had his first food yesterday (had soup and ice cream before before all the drama!). Puréed sausage, mash and peas. The best news possible is that all of the tumour has been removed and there are good clear margins. Also 37 lymph nodes removed and all are clear! Such a huge relief after the last 6 months never mind the last week! 
 

So onward and upwards albeit at a slower pace. The surgeon has just spoken with me and is very pleased with his progress considering all that has happened. He is moving to 'step down' either today or tomorrow. It has been a real knock back but he is recovering. They are taking it slowly to ensure he is well enough to come home. He also said that prior to what happened he was exceeding all expectations and it was so sad that this complication happened. 

All in all a good day! Much better than last Wednesday. Surgeon said he's not out the woods yet but has done remarkably well.

Lee I hope you've managed to get out and your dad's swallowing should improve with chemo. 
 

Bfg hope your FLOT is manageable.

RayB hope you are continuing to make progress.

Hilts - I think I need to have four pints!

Doug your continued recovery is very encouraging.

Everyone - this is such a hard diagnosis and having people who understand is truly helpful.

Keeping the faith

Milly