Trevor's Story

[sandraW]

It was never going to be a stent but a drain, after a 5 and half hour wait, in the day room for his bed procedure was at 4pm, the porter came to collect him just as they were showing us to the room, so Dr did quick exam, no name tag or drug sheet done, porter went for the gown for us, and said there is no good taking him without drug charts, so Dr went and did it. After all that they couldn't get the drain in, so they say they are going to try again under anaesthetic when I don't know. After telling the Dr what drugs he is on, leaving a copy list with the nurse in charge, I gave him a 10mg oxynorm before I left him at 7pm, he has just rung to say all the pain relief he has had has been 2 paracetamol and he is in agony, there is really no excuse for this, as all the oxycontin and oxynorm has been prescribed at the unit and therefore is in his notes. Visiting is at 1pm so I will take all his meds with me and try to sort it out while I a there. Sorry for the rant! but I am just so frustrated love sandrax

Edited April 1, 2015 by sandraW

[Didge]

So sorry, Sandra. I do hope you get some answers when you go in. Am having a crisis our end too but will post later. Sending you lots of love xxx

[wackywacky]

Hi Sandra when it rains it pours, all I can say re drains, get him on antibiotics cos odds on its going to cause an infection from my experience, take care thinking about you love wacky xxx

[sandraW]

Things got sorted re pain relief in fact they have gone the other way and doubled his oxycontin and oxynorm, so he is very sleepy. but that also might be because he said he didn't get any sleep due to the pain.

They have told Trevor today that they are now not sure that they can get the drain in, and that his liver is now full of tumours, although they are small, so she said if they couldn't get the drain in obviously there would be no more treatment. The fact that they have contacted the Palliative care team makes me think they are not going to try again, but we will wait and see. love to all sandrax xx

[nikkis]

My dear Sandra,

I am so sorry to hear that you and Trevor are going through this, having been there, with them debating about putting drains in, trying and failing, I know how incredibly hard it is to keep picking yourself up, and keep going, but somehow you do, and you are such an amazing strong person, you will. Just make sure they do whatever they need to keep that pain under control night and day, and if they don't make as much fuss as you need too. Trevor deserves the very best care.

Lots of love,

Nikki

[Cathy]

Hi Sandra

I'm sure the sleepiness is due to a mixture of no sleep and the pain killers. Good that it seems under control.

Try get some rest yourself too if you can.

Take care and have fingers crossed for you

Cathy xx

[J_T]

Sandra and Trevor, sending all my love and good wishes.

I hope Trevor is at least comfortable.

Love

Julia x

[Guest]

Oh Sandra,

It is just one thing after another for you both. I really hope he can get more treatment.

This bloody cancer is horrible, I hate it so much. I hate what we are all going through.

Leila xx

[Sueoliver]

Hi Sandra,

Sending big hugs to you both.

Sue xxx

[sandraW]

Thanks ladies, it means so much to know you all understand. Well they have sent him home for the weekend, when I picked him up this lunchtime he looked dreadful, got him home had a shave and a shower, he felt he just couldn't cope to have one there even though he had his own bathroom. He has had something to eat quite a lot to be honest and is looking and feeling much better.

However.... when I was taking to the nurse yesterday, she mentioned that they had started T on 2 lots of antibiotics, he said they had given him some tablets and they were in the bag, no antibiotics!! so I rang the ward to be told that they had given him the antibiotics, but they had given him his penicillan that he takes daily as he has no spleen. When she checked his notes she realised that yes he should have had antibiotics, so said she would order them from pharmacy but they would take a while.

I rang again at 6.30pm she said they still weren't there, asked where I lived and offered to drop them off at home for us.

I'm just totally astounded, this is a centre of excellence, he didn't get half the tablets he should have had while he was in, but he just felt so lousy he lost the plot as they gave him them at all times of the day and night or so it seemed to him.

Needless to say he has missed a dose of the antibiotics, so will have to shuffle to get the extra dose in over the next 24 hours. Also when she dropped them off the nurse said, she doesn't think T will get back in for the drain on Tuesday, even though she assured him they were keeping his bed for him when he left, and said we have to ring on Monday so we are back to wait and see. Thanks again for your good wishes I think we will need them love sandrax xx

[Guest]

Absolutely disgusting Sandra. Just when you think they can't get any worse. I don't know about your hospital, but they don't seem fazed, or bothered about their mistakes. It is just normality to them. Our hospital in Sheffield is brilliant, but the one in Worksop where my Dad lives is horrendous. He only had it for a few days. You and Trevor, and Sue and her mum have it so much worse. I just don't know how people get their jobs.

Pleased Trevor feels better being at home though. Told dad he was home, he said he will enjoy being in his own bed tonight.

Leila xx

[Didge]

Dreadful, Sandra. But seems to be quite common. Given that my man was thinking of changing to the Churchill Oxford, (and may still do so at a later less critical treatment point!) anyone who has any knowledge/experience of this one please feel free to private message me as I don't suppose we are supposed to discuss names of hospitals on here.

[jay]

Just awful Sandra, hope Trevor has got his drain fitted today.

Massive hug Sandra

love Jayne

x

[Didge]

Let us know how you get on, Sandra. Thinking of you! my fella had a blood transfusion today and is feeling a bit better.

[sandraW]

Hi All,

Well and so we wait.... I rang the unit yesterday and our lovely sister made sure Trevor had a bed to go to this morning albeit on another ward, there are 3. I rang back and asked if he could have breakfast or not and was told yes, but nothing after 8am. as he was scheduled for the procedure, and he did get a bed within 10 minutes of arriving on the ward. He rang me to say that the radiologist now wanted an ultrasound, so they rushed him there so he could still get it done today but they didn't do it after all. They said they thought the ultrasound was ok, so I don't know why they couldn't get it done, perhaps they ran out of time.

The other problem is that, he had no pain relief all day as he was nil by mouth after 8am, and even though I asked when I went back this evening, it took at least another hour before he got anything.

He is getting weaker and is just so tired all the time, it just makes me so sad, as he has been waiting 3 weeks now, so I will find out tomorrow if he can have it done on Friday. I hope you all had the best Easter you could take care love sandrax xx

Didge, glad he is feeling better now, please post and lets us know what's happening xx

[J_T]

Sandra am appalled to hear latest setback. Please diary all these events and make sure you complain when the time is right. One wonders if medics have any comprehension whatsoever of the mental torment of stalled procedures? It is totally unacceptable what has happened to Trevor, a very sick man, over the last few weeks.

Sending you love and strength.

Julia x

[Sueoliver]

Sandra I really feel for you and Trevor. I really hope they sort it all out soon and the procedure goes ahead on Friday! These procedures really should be a priority when someone is so poorly.

Stay strong for Trevor.

Sending lots of love.

Sue x

[nikkis]

Dear Sandra,

Thinking of you and Trevor, really hope things are sorted out this week.

Lots of love,

Nikki

[Didge]

Sandra, Friday can't come quick enough I am sure. I do hope it goes ahead! Thinking of you, lots of love, Didge x

[Guest]

Dear Sandra,

I am so sorry they are messing you about so much. It really is absolutely disgraceful. You just feel like no one cares. I knkw so much what it is like to see them getting weaker, I only wish I could say or do something.

Leila xx

[jay]

Thinking of you both Sandra

love Jayne

x

[sandraW]

On Thursday they gave us the news, that he was still unable to have the procedure on Friday, as the list was full, but he has a DEFINITE place on next Tuesday's list at 2pm, so he came home again until Monday. We have now been waiting since the 15th March, when I queried this, they said they had tried to do it on the 30th and it wasn't their fault that Trevor was unable to stand the pain having it done under a local, and that they had tried.

Meanwhile he just gets more and more tired and weaker and weaker, but I spoke to Dianne yesterday, and she has helped so much to make me feel a bit more positive. She said Trevor is struggling so much because he is not getting rid of all the poisons in his body due to the jaundice, and that he should feel considerably better once things get moving again, so fingers crossed.

His appetite is non existent, and he is now struggling to even walk, he has lost a stone in weight, even though I am forcing him to eat small amounts, as often as he can.It seems such a shame as he will now have to battle to get some strength back, as well as managing his pain.Just can't wait for him to finally get it sorted, take care love sandrax

[brodders]

You are a remarkable woman, so brave and strong and I see so supportive of others.

I am thinking of you and Trevor , take care and lots of love Cate xxx

[MSH]

sandraW wrote:

> it wasn't their fault that Trevor was unable

> to stand the pain having it done under a local, and that they had tried.

Yes it was. There shouldn't be any pain when a procedure is done under a local anaesthetic. Sometimes a little might be unavoidable, but if a procedure has to be abandoned it suggests a failure to administer the anaesthetic correctly or a failure to plan appropriately. To try and pass it off as the patient's fault is pusillanimous.

[sandraW]

Thanks for that Mark, He has been so brave through everything from his surgery, his PICC lines as he has very thick skin, through his 23 sessions of chemo, so I was upset, that they were blaming him, 4 people held him down, and they gave him all the anaesthetic they could, but he still couldn't take the pain. sandrax