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Trevor's Story


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Pleased he got out in the garden Sandra. I know how much he enjoys his garden.


Like Didge said, I too feel angry that Trevor has to wait so long. It is disgusting. For his mood as much as his pain. It is so unfair. Good sign that he is still eating well though, I think that is important. But that is stubborness I would guess. I wish we could do more. I wish we didn't have to fight the health system.


Love to both of you


Leila xx

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Thanks so much to all of you it does help to know other people understand your frustration, fear and anger, not against the people they are all doing their best, its the bloody rotten disease and also the system. love sandrax xx

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Continued... on Sunday I noticed that Trevor is now jaundiced, I had been checking for a couple of days but could see for sure on Sunday. I wanted him to go the unit but he was having none of it, so I waited until Monday morning, I rang them and they told us to go to the outpatients and we would be seen there. T had bloods taken and then we saw one of the on call doctors, she managed to get us a CT scan, although we had to wait a couple of hours, then another couple of hours for the results, but it was done.

The results were not unexpected but not good, the tumour has grown, and is pressing on the duct from the gall bladder hence the jaundice. They wanted to admit him, but said he could go home as really, he didn't need to be in hospital, as he is still quite well. The doctor said she would get him an appointment for stent as soon as she could and would ring me today. She rang at lunchtime to let me know the machine the radiologist uses had broken down, but, they are hoping to get it fixed today or tomorrow, so she hasn't been able to get an appointment yet. She assures me the fact that Trevor is not an in-patient will not affect him getting the earliest appointment available but then said it might be next week!!! as it wasn't an emergency, emergency, whatever that means.

Meanwhile I am here worrying, that its merrily growing away, while we wait, as there will obviously be no treatment until he gets over the procedure, and I don't know how quickly he will recover.

Trevor is just so tired all the time, he still has the pain, all over his tummy but especially under his ribs, but luckily he is still eating and drinking ok. I just feel that unless he gets the stent fitted soon, he will deteriorate as the bile will poison his body, I am trying to be positive but really struggling at the moment. love to you all sandrax

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Oh Sandra I am sorry it's not good news. My Mum had a stent in her bile duct and waited about a week to have it! Her recovery was quite quick and at the time it made a big difference so try and stay positive!

Times are hard for many of us at the moment but I am so glad to have found this forum.

Stay strong you are amazing! Thinking of you and Trevor.

Lots of love Sue xxx

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Oh I feel for you. These waits are so agonising! We are waiting for radiotherapy for a tumour and then possible surgery but the weeks are ticking by with one delay after another that it will surely soon be too late. Hang on in there and hopefully it will be sorted sooner rather than later. Lots of love, Didge xx

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Sandra, sorry that Trevor is struggling so much at the moment. Good that the scan was done promptly, and as you say with your experience, you knew pretty much what was coming. The stent should hopefully change the situation quickly and allow you to look at the next step. It is difficult as a relatively well sufferer to imagine the pain carers go through watching loved ones travel this path, but the strength and determination (not forgetting Love) displayed here is amazing. I hope they get Trevor in for the stent really soon.


Take care both


Steve

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Sorry to hear of Trevor's latest set back and understand completely that he doesn't want to go to hospital, Ray was just the same!


I think it's outrageous he has to wait so long for the stent, hope he doesn't have the associated itching, that drove Ray potty! You are right too about having to wait for treatment. Presumably his bilirubin is high and you will have to wait for that to get back to normal before more chemo can be given.


Hoping you get this stent done quickly and Trevor can get back to receiving treatment.


Julia x

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Finally heard about when Trevor can go for the stent fitting, as the machine is still not repaired, the earliest is next Friday the 27th March. As we live in a city with a population of over a quarter of a million people, I find this totally unexplainable, but that's the first date available so there is nothing we can do but wait. He is still in a lot of pain, and taking his oxycontin/ oxynorm/ and paracetamol regularly and of course he is still yellow, but fortunately still eating well, I am just so glad he didn't stay as an in patient on Monday, as he would have been climbing the walls by now, at least he can relax at home. take care all sandrax xx

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Sorry to hear he's suffering with all that pain, but yes it's good he's home! I though jaundice was an automatic ticket to staying on the ward.


A week does seem like a long time for the stent especially considering his symptoms. No other hospitals around that could squeeze him in?

X

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Hi Sandra it is unbelievable that you have to wait so long! Is there another hospital you could travel to? I hope Trevor is ok and managing his pain. I feel for both of you. Take care. Sue xxx

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Hi Sandra,


Really sorry to read about Trevor. He is really going through it. I find it absolutely shocking that you have to wait so long. As others have said, can you go to another hospital. Surely the consultant can email something, somewhere??


Pleased Trevor is still eating and drinking ok, that is very important. His mental state must be unimaginable, and it must be heartbreaking for. That is should a hard part in all this, for us relatives and loved ones.

Thinking of you both.


Leila xx

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Hi Sandra I hope everything goes well tomorrow and Trevor has his stent fitted. Once it is done I am sure he will start to feel better.

Take Care. Love Sue xxx

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Dear Sandra,


I've just read your last post. I am so sorry that Trevor is in such a big pain. This is just so hard for both of you. I hope tomorrow will go well and Trevor has his stent fitted.

I am thinking of you.

Love,

Susanna xxx

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Thanks for all your lovely comments. On Wednesday at 10am I checked that there was a bed allocated for Trevor for Thursday ready for the stent procedure today, and everything was fine, at 10.30am the Dr that had booked everything for us, rang to say the procedure was cancelled as the chief radiologist had requested a MRI scan, but unfortunately the Dr had checked and there wasn't an appointment for a MRI available until late next week. I was really really upset to say the least, but then half an hour later, the sister from the ward Trevor was being admitted to rang to ask what was going on, when I explained she said it was all totally unacceptable and to leave it with her. Another 30 mins later the scan department rang and offered us a scan for yesterday. The ward sister then rang back and asked us to call to see her on the ward after the scan. which we did, and she arranged for us to see the professor's registrar today. So we went to the unit today and were told they can more than likely fit a stent, so T had bloods done ready for being admitted on Monday, we were about 5 minutes from home when the mobile rang to say could we go back to the unit as the had missed one of the blood tests, so we had a snack then went back again. But honestly the staff at the unit have been absolutely fantastic, they really go the extra mile, so now I am just waiting for a phone call to tell us what time to go on Monday. So hopefully T should be having the stent finally fitted on Monday or Tuesday, so fingers and toes crossed please, love to you all sandrax xx


PSThe registrar thinks that Trevor's bile duct is not completely blocked as his bilirubin levels are just over 200 when she was expecting them to be in the 400s, so even though he is so very tired, and a lovely yellow colour, he hasn't had the dreaded itch I'm glad to say.

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Hi sandra, sounds like the sister on the ward at least has something about her but I still think the wait is deplorable. I can tell you that if Trevor did have the itch you would have punched somebody by now. I am SO pleased to hear that he doesn't! Really hope everything goes to plan on Monday.


Julia x

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Hi Sandra, you simply could not write a story like this! It is however good to see that someone cares and is proactive on your and Trevor's behalf. Good luck with the stent!


Steve

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