Oesophageal Patients Association
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Sponge like tissue

So you all know my husband hasn't been doing so well. Things seem to have gotten worse since we got him home just over a week ago.

1st night home is overnight feed pump failed. No replacement available locally so we had to wait until the morning to get it sorted. Then he started throwing up, had to get OOH doctor out to get an antiemetic injection. Our own gp visited the next day as it was touch and go as to whether my husband would get readmitted. Thankfully that didn't happen.

He had an alright couple of days after that the he went down hill rapidly. He is no longer able to take anything orally, even sips of water are making a reappearance. He's wretching and straining to be sick.

!!Don't read the next bit if you're eating!!!

On one such sickness occasion he dislodged 3 brazil nut size "bits". The had a sponge like consistency, no smell, were pail in colour, not mucousy, texture like a piece of sponge, but when squished in my fingers (I had gloves on) it went into a smooth consistency. Anyone come across this before?

Because of all the problems husband has been having re nutrition/sickness etc I've been in touch with his upper GI nurses and dieticians mentioned the sponge like substance to them and they said it happens, bits of the tumour break away as it dies off.

Has anyone heard of or experienced this before?. Just seems weird to me that the tumour would be breaking upwhen it's never happened he whole way through chemo.

We have a follow up appointment on Friday and we will be pushing for a stent to be fitted and we see what plan of action they have come up with. I have my trusty notebook full of questions and suggestions for them. I've already planted seeds regrading clinical trials, proton therapy and nivolumab. They said they would discuss things at his appointment.

All we want now is more time together, but we want that time to be quality.

We celebrated our 1st wedding anniversary last Sunday by having ice cream for breakfast in bed. Not how we hoped we would be celebrating, but it worked for us.

L xx

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Oh Lucy - it sounds like you are both going through a dreadful time. All I can say is that I'm thinking of you and hope your husband can get some relief as soon as possible. Keep shouting as loud as you can - it's the only way to be heard!!

All the very best, Kate

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Lucy - the ice cream in bed sounds a great way to celebrate your anniversary .Well done !

I don't know ,but that sounds odd to me about bits of the tumour .Wouldn't they be more likely to go down and be passed out the other end ? Could it have been lumps of undigested feed ?

Keep asking and pushing ,ask them about the contents of the feed as I think altho they contain a scientific mix of calories and nutrients they can be v sugary and artificial .Might there be feeds with a better /healthier content ? I know some people mix their own and deliver via those large plastic syringes ,like those used for flushing out .

All love and strength xx

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HI.

I think the tissue was unlikely to be undigested food as hubby hadn't eaten anything solid for over a week. He is getting fed via a jej tube so unlikely to be a build up of his supplements. I also have to aspirate his peg tube 2 or 3 times a day so there's definitely nothing sitting in there. It's just a bit weird.

The dietician was out at the end of the week to change his feeds to give him more nutritional benefit. The one he is on just simply isn't enough. He's lost more weight and as no energy at all. Hopefully that will help a bit.

One thing that's going well is that his pain is under control which is great. His scars are clean and he's healing nicely. Not bad considering a week after the Ivor Lewis that never was he was rushed back in to emergency theatre as his stomach had moved up in to his lung space and taken up residency there!

2 major operations in the space of a week. It could only happen to us.

Thanks for your reply.

L xx

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Yes of course Lucy - that makes sense .

It's great that his wounds are healing .I understand that your body uses quite a lot of calories during the healing process so I guess that's another demand .

You sound like such a great person ,your husband is so lucky to have you .This must be so hard for you both ,I hope you have the support of friends /family .

x

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Hi Lucy, so sorry to hear of your struggle, I know from personal experience that there can be scarey moments where we don't know what to do to help. My husband had IL in 2012 and then further major surgery due to adhesions and twisted intestines. It sure can take its toll! Stay strong and be positive, it will improve but it takes a lot of patience and time. Xx

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