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Trevor's Story


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Oh thanks so much for all the good wishes everyone.

The Professor examined Trevor again today for the Neuropathy issues and said that there seemed little to no change so he can have 2 more treatments and then we have to see him again. He also gave him the results of the chest Xray T had after the high temp and day in the day unit a few weeks ago, which he said was fine and also looked at the culture results taken from the PIC line on the same day and said they were all clear too.

Trevor has had a pain in his left side for a while now, it comes and goes but it does seem to have got worse recently, so the Prof examined him and said he can't explain what it is probably bowel/intestine but he couldn't be sure, but he said it wasn't the typical site or type of Pancreatic pain, which I think helped to put our minds at rest. Nothing much is changing, everything is stable!! and according to the Proffesor "stable is good" He also organised another test for tumour markers today, we don't ask for numbers anymore, as we know they are high, we just hope that they are stable too.

So not great news but not too bad either lets hope it continues and T can get a break soon from the chemo even for a few weeks, he has been on it since September, so he needs a break. take care all love sandrax xx

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Obviously mxed results for yourself and Trevor, but the stability does sound positive. Also pleased that the Neuropathy is not worsening. I hope he can get a chemo break soon to allow you both to have a bit of normality.


Thinking of you both!



Steve

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Sandra, I have read so much on here that stable is good news. I know we hope for more/better, but stable is stable. It hasn't progressed. It's being held back. I always tell my Dad that if they say stable, then we can't hope for more. Anything else is just a bonus. Good news for next two treatments as well. Hope they go well and that Trevor gets a well deserved break.


Thinking of you both


Leila xx

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PCUK Nurse Jeni

Good to hear this Sandra!


It does sound as all is going OK right now.

Lets hope this trend continues.

Great to hear that T has been examined so thoroughly. And that everything coming back as clear.


Keep up the good work Trevor!


Jeni.

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Dear Sandra,


I also think that stable is good. Also it's good to hear that the Neuropathy is not getting worse. You are both doing amazingly!


Thinking of you!

Love,

Susanna xxx

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  • 2 weeks later...

Hi all, thanks for the kind comments.

Trevor could only have the Oxaliplatin on Monday, as there was a problem with some of his bloods, not the usual chemo bloods though, so he didn't get the 5 Fu or the 5FU pump. He is still suffering with pain in his tummy, sometimes its in his left side, sometimes across his tummy button sometimes lower down. We have to see the Professor again before his next treatment, if its not one thing its another, at the moment for us all. Lets hope things improve and soon!! take care all sandrax xx

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Dear Sandra,


I'm sorry to read that Trevor is having pain and struggling. I really hope that they will find the cause of the pain and ease it. When is his next CT scan?

Thinking of you!


Love,

Susanna xxx

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Aww thanks for asking Annette, the tummy pains seemed to have disappeared, thank goodness, but now he has back ache, but he has been into work ( he and our elder son ran a transport business between them before Trevor had to retire) twice this week just to supervise!!!! Gives him an interest, I suppose but then he comes home absolutely shattered, and looks dreadful, but he finds it so hard to sit around doing nothing.

We found that the reason he couldn't have the 5FU part of the Chemo was because his liver count had risen again, we have to see the professor on Monday before we can have treatment, if they will let him have more of this treatment that is. We had a tumour marker taken on the 9th February, so I am praying that that hasn't risen, if it has I really don't know what we will do.

I hope Tracy is still doing well, love to you all sandrax

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Hi Sandra


Thanks for taking the time to reply. Like so many on the forum you offer such support and help to others when fighting yourself. Fingers crossed for Monday. If you want to contact me please ask the support nurses for my email address I am happy to share ideas and things that we find really helpful. Just remember you are never alone, there is always someone to help. Love to you all Annette xxx

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Well the tummy pains returned with a vengance we had been out for lunch on the Friday, Trevor had not eaten much of his lunch, and about 6 30pm, he started retching and had really bad pain across his tummy under his ribs, not sick as such as he had nothing in his stomach, but couldn't even keep water down. He couldn't sit or lay as he was in so much pain, and I was seriously thinking of ringing the unit. After the retching subsided about 10 30 pm I gave him a 10mg Oxynorm, and after about an hour the pain subsided, but he continued to have it nearly all the weekend. We saw the professor on the Monday, he examined Trevor and said although he could not feel anything in his liver, the liver count had risen yet again, so he was stopping treatment, and organising yet another scan. Also having a tumour markers done, he had requested one on the 9th February, but for some reason it wasn't done. He explained that tumours in the liver do not usually cause pain unless as Didge said the tumour is pressing on the membrane that encompasses the liver, which is what he thinks is causing Trevor's pain (snap Didge), so he put him on oxycontin, twice a day.

I rang up the C/T department at the hospital and the first "urgent" scan is 25th March, so we will have to wait until then, then hopefully see the professor the following Monday. Trevor is still in quite a bit of pain, and he is very tired, all the time, I think he is a bit down at the moment, our eldest son and his family came to stay over the weekend, and our youngest and his family the weekend before, and he was not too bad for the 24 hours they were here, but I don,t know wether he was just putting on a brave front for the grandkids. I am trying to get him out for part of the day, to buck him up a bit, but not too much to tire him out, so all we can do is wait and see and hopefully the break from treatment will help him regain his strength a bit. love to you all sandrax

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Hi Sandra, sorry to hear that Trevor is having a bad time at the moment. It does sound ridiculous that his condition warrants stopping treatment but you still have to wait until 25th for a CT Scan! His condition must surely justify an immediate scan?! It must be so frustrating for you both. I hope they can continue to manage the pain in the meantime and that the scan helps them deal with this issue.


Steve

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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

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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

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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

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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

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