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Latest on pete

Valerie01
Valerie01

Hi all hope everyone is well

Pete not good again he has now got fluid on his lungs again he has a bad case of stomach upset they are moving him in to a room on his own again they have yet again stopped all water and cup tea back to nill by mouth he is so fed up he said he don't think he can carry on much longer the doctor this morning said to him when we get all this sorted out we can then concentrate on the cancer but they told us they had got all the cancer pete said to the doctor I thought you had got the cancer and he just said oh yeah so now we dont know if they did or not i have asked for the consultant to phone me but he hasn't even been out to se Peter I dont know what to do should I phone the upper giny nurse and se if they can tell me anything pete is so depressed I dont know what to do all I have said to him in the 8 weeks hes been in hospital is it's ok love ,you will be ok ,dont worry and things like that I'm actually running out of things to say to him 😥😥

17 Replies
oldestnewest

I'm so sorry to hear that your Husband is having such a difficult recovery. But he has had the operation and the cancer has been taken away. That must now be confirmed to you and your Husband by the consultant or the upper GI nurse to give you both peach of mind.

When you have this confirmed you will both be in a better place for a full recovery. Don't give up because this has happened to other patients in the past and eventually they have made a full recovery.

Best wishes

Phil

Valerie01
Valerie01 in reply to Heathwaite

Thank you for your reply firstly the consultant told him 3 days after his operation that as far as he could tell they had got all the nasty cancer so pete was ok but now 8 weeks later the doctors that spoke with him this morning said we will get this sorted then we can concentrate on the cancer so pete is now in bits having gone through the operation and then having 1 complications after another in and out of intensive care unit fighting for his life then to be told that this morning I have been told the consultant will phone me tomorrow on a plus side they haven't put another drain tube in his consultant wants to give him antibiotics again we will just have to see what they say tomorrow I'm trying hard to keep his chin up but running out of comforting words to say to him when I'm so worried all the time

Mauser1905
Mauser1905 in reply to Valerie01

My gut feeling is that given his emotive reactions with the hospitisation and surgeon not spoken to you directly yet, its pure miscommunication between all the parties at different places. With the Chinese virus situation unfortunately difficult for face to face meeting.

However. Whatever you say to him, he has to do his bit to pick up the slack and fight for himself, no choice there. We all been there.

Hope he gathers his end together to pull through the not so great days.

You can only stay strong and calm to keep all connected.

Suggest asking the unit for video call with surgeon or consultant who is seeing him currently, as well the intensivist on duty, he/she should be round the clock so not needing to wait for the day shift. His notes should have ear information.

As I suspect nothing sinister, it may be just that Pete has mixed up what Dr tried to tell him and what he interpreted. Again purely my gut feeling. You are in better position to ask the team for clarity. Please do ask them a d also if you can connect to the ICU Charge Nurse, do mention that Pete is having issues wit the information passed on to him and you would like to be on the phone during the drs round, if possible.

Valerie01
Valerie01 in reply to Mauser1905

Yes we have tryed to be on video call when doctors rounds but the internet is not very good in hospital so it was hit and miss lol we will I'm serton get things sorted when I talk to consultant tomorrow they know pete gets confused and dusnt alw6take things in sometimes he has to have things explained a few times that's due to his cerebral palsy so they do understand

Heathwaite
Heathwaite in reply to Valerie01

I fully understand your concern and I would be in bits if I was getting mixed messages. Your consultant should clear this up with you tomorrow. But you ensure you tell him how upsetting this was for Pete that the Doctor started talking about the cancer again.

Hopefully you will feel much better after your meeting with the consultant.

Hi sorry to hear Pete is not good again. Firstly you need to get the correct information. They do do tests on lymph nodes which normally take 2 /3weeks the histology. That determines if the cancer has all gone. It is normal to have chemo after to mop up any stray cells. Maybe that is what they are talking about.

It must be depressing for him that you cannot visit. Reality of such a big operation does hit you in waves. Stay positive however hard it is for you.

Best wishes virtual hugs

Debbie

Valerie01
Valerie01 in reply to kiddy

Thank you for your reply I will stay positive for him that goes without saying it is hard not been able to visit and 8 weeks is a long time to be apart especially with all that's going on with covid 19 pete has had 3 tests so far for that all negative thank god it certainly is a test of strength having the operation and they say it will be hard but we didn't think he would still be in hospital 8 weeks on and he probably will be in for some time yet it will be better when he is well enough to get home and I can give him the hugs and reassurance when he is feeling down

kiddy
kiddy in reply to Valerie01

Hi yes cant imagine being away from someone that long ,especially after such a big operation. I hope you get information tomorrow.

Best wishes

Debbie

Hi sorry about your news. I know how Pete must feel. Where is the light at the end of the tunnel. Please stay strong the pair of you. Sending love and hugs. X

Oh , Valerie. I feel for you . I have been here . My husband had all Pete has had ( minus cerebral palsy) , don’t you or Pete give up! My husband was in ICU for 5 months , I was constantly being told he wouldn’t make it. He had a leak in oesophagus too, that just wouldn’t heal, 3 drains, sepsis , pneumonia , 3 rounds of dialysis , and delerium . BUT ,he is still here 18 months down the line.

All good advice on here as ever. Pete is not in the best place ( mentally) to take all the information in. It vital for both of you that the consultant liases with you both, so there is no confusion. You can ring unit at any time to get an updates on Pete. Our hospital was good at giving me precise info at any given time.

The hardest thing for you is not being able to see him , let him know you are there and hold his hand. Stay strong & have a conversation with consultant . Are you in contact with the actual surgeon who did Pete’s op as opposed to ICU consultants?

Thinking of you both. Stay strong . X

The sergen is the 1 that is phoning me today I think they keep saying mr neadon is going in but he doesn't go on the day they say so hopefully it will be him that can phone me today x

Hi it must be very hard for you both at this time. It does sound like miscommunication and Chinese whispers. I hope you get some answers from the consultant and UGI nurse. Do you have a CNS who is your key contact? Maybe talk to her if you have one about his low mental state and options to improve it. Maybe a mobile hot spot plugged in his room would give better wifi and you could talk to him more especially if he is on his own in the room. God bless you both and sending strength and hugs take care Lizzy

Hi Valerie,

Sorry for what you and Pete are going through. The fact Pete has had the operation is a positive. If when the tumour was taken out the margins were clear I think the clinicians would have some confidence in saying they got it all. If margins were tight or a number of lymph nodes were tested positive then more treatment such as chemo will probably be required to mop up any rogue cells. This would not be known for certain until the results came back . I would try and contact the upper GI nurse or Pete's consultant to clarify if more treatment will be required.

Best Wishes

Bunny

All of the other posts say what I believe. Tough times for your both, in my prayers. Never give up.

I had the Ivor Lewis op age 63 in 2012 I came through the op with no problems but on day six post op I went down with sepsis, was in an induced coma for about six days on a ventilator and my wife was told to expect the worst, but thanks to to wonderful doctors and nurses at the Royal Marsden at Chelsea I managed to pull through and walked out of the hospital after about five weeks .

I didn't get the lymph node results until about seven weeks after the op which thankfully came back clear.i was back at work after eight months as a plumber lifting radiators and boilers etc and playing golf, that was nearly eight years ago and I'm still working and doing nearly all the things I ever did so tell your husband he mustn't give up, keep fighting get back on your feet as soon as you can and eat well as best , it's not easy but you can beat it, all the best.

Thank you for your reply he said he will just get on with it tbh he dusnt have a choice but he is now in a more positive place I think he was having a wobbly few days and now has his head around things again his ser6had a visit with him explained things ab5what is going on and said he will be there for at least another 5 weeks so then he the sergen phone me and we had a good chat about what's going on with pete and now we have just resigned to getting him home in 5 week

Maybe you can talk to the hospital as if you are self isolating you are theoretically clean. Maybe with PPI they could arrange a visit especially if he is still in his own room xxx

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