A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Trevor's Story

Postby jay » Wed Mar 11, 2015 10:40 am

Hi Sandra, So sorry Trevor is in so much pain , hope they get it sorted soon. Loads of luck for the scan on the 25 th.
love Jayne
x

Fifi

Re: Trevor's Story

Postby Fifi » Thu Mar 12, 2015 8:21 am

Hi Sandra,m

Sor sorry to hear of Trevor's awful pain. He should not have to wait until the 25th for a scan, as then he will have ti wait again for results. Can you not keep ringing the hospital? I'm sure they do, but do they realise the scan is for someone serious, not just a random scan? I would keep ringing, explain that he has pc and that he needs this scan desperately for treatment to commence.

Is Trevor able to eat anything?

Leila xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Trevor's Story

Postby Sueoliver » Thu Mar 12, 2015 8:36 am

Hi Sandra I feel for you and Trevor this is just so hard. Like a roller coaster isn't it. I hope they can sort the pain out and maybe the scan could be moved forward?
It is so hard for us to watch but we are all doing a great job supporting our loved ones!
Take care of yourself as well Sandra. Love Sue xxx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Thu Mar 12, 2015 4:43 pm

Hi Leila and Sue,

I have already spoken to the scan department, and explained our situation, the lady on the phone apologised and said she always feels sorry that she can't fit people in earlier, but they are just so busy. We have 2 hospitals that do C/T scans, but they are both run from the one main department, they have 50 people on the wait list for a cancellation. The 25th was the first apt for an URGENT scan, and this was requested on the 4th of March by the consultant after he got the results for the tumour markers, which have risen considerably again. We do however have an appointment with the professor arranged for the following Monday, the 30th, and his secretary has assured us that she will make sure the results are available.
Leila, Trevor is still eating well, not as well as he was, but still has 3 meals a day, and no real significant weight loss, although he has dropped a few pounds. Yesterday he spent all day in his chair, napping, but today is was so lovely outside we went out to do some gardening, we were out for a couple of hours, but he did 10 minutes, then had a sit down for 10 minutes, but we got quite a bit done, potting up some plants, so not heavy work, but he gets such a sense of achievement, he is now fast asleep on the sofa. He is still having the pains in his tummy, top and sides, regularly but the oxycontin and paracetamol together do seemed to have helped, so fingers crossed it won't get any worse.I hope your Dad is behaving.
Sue, that's all we can do isn't it, keep doing all we can to support them, and you're right it is so very hard, I hope your mum feels better soon.
love sandrax xx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Trevor's Story

Postby Didge » Thu Mar 12, 2015 8:02 pm

Sandra - I feel angry on your behalf that you have to wait so long for a scan! In the meantime I hope Trevor feels a little better every day and the weather stays nice for gardening! xxx

Fifi

Re: Trevor's Story

Postby Fifi » Thu Mar 12, 2015 9:03 pm

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Thu Mar 12, 2015 9:10 pm

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Tue Mar 17, 2015 10:11 pm

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

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Trevor's Story

Postby Sueoliver » Tue Mar 17, 2015 10:33 pm

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

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Trevor's Story

Postby Didge » Tue Mar 17, 2015 11:53 pm

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Trevor's Story

Postby Slewis7313 » Wed Mar 18, 2015 8:23 am

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
X

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Trevor's Story

Postby jay » Wed Mar 18, 2015 9:53 am

Hope Trevor gets his stent soon Sandra, thinking of you both
love Jayne
xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Trevor's Story

Postby J_T » Wed Mar 18, 2015 10:53 am

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Fri Mar 20, 2015 3:46 pm

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

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Trevor's Story

Postby RLF » Fri Mar 20, 2015 4:40 pm

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