So Angry

  • 10 replies
  • 25 subscribers
  • 976 views

Hi good people

Some of you may know i have had problems with my RIG since having it fitted back in April, due to the surgeon who placed it.

This has been on going, the most resent is it leaking, for the just over week now i can only tolerate 120mls at once before it starts leaking.

That includes anything i take oraly, unless it's really slow and small sips.

Cutting to the chase... i had an appointment yesterday with my Rig nurse and dietition etc.. one of a few to try to sort this problem out. While i was there they managed to get a consultant to come and assess and give advice. They / he wanted to admit me because of not being able to have fluids and feed ie; my version of food and drink for a week, and to sort this tube out. But i won't go in because the last four times i've gone in, they have messed up big time, putting it mildy.

Firstly he asked why i had the RIG as i could manange small amounts of food and could swallow.. and didn't want to listen as to why or what i could.

He gave options and he made suggestions etc as to what could be done, unfortunately there wasn't a lot. I was unsure about them and obviously wanted time to think, but he wanted a desion there and then.

He then said ' Well, as i you're Paliative care, just take the tube out and just let it heal ...... After all you have to face reality.

He was so lucky i couldn't get of the bed. I told him to get out of the room, but he carried on talking, what about i'm not sure as i was too shocked and wasn't listening,I repeated...... You, pointing at him this time, get out now. To which he turned tail and went.

I said about going back to an NG but it would still come out of the RIG site, so it wouldn't really help for the length of time we would need for the RIG hole to close more and stop leaking. If i have fluid either oraly or via RIG it still leaks out the stoma hole.

They have put in a much larger tube and filled the balloon with more water in the hope it will stop some of the leak, it's helped a little but not solved the problem, We are also trying a small amount of feed over two hrs via the pump, a couple of times a day just to try and get something it to me, then upping the amount the next. It's not much, but we don't want to put strain on the hole and just take it slow. Anything is better than nothing at the moment.

They are suggesting another type of tube that goes further down into the intestine, as a temprary measure so we can get the RIG site healed and sorted. I'm unsure what that one is called, I also wouldn't have to be admitted for it, just go in as a day patient, this sounds promising as it bypasses the stomach, but we will see...

They did say about starting again, with a new site, but the problems i've had with this one i don't want to do that and risk all this again, i've had enough.

My team have been doing their very best to get this sorted for me. It's just unfortunate they are based at this bad hospital.

Cat x

  • OMG Cat, what a thing to say to you, surely he should be reported for that.

    I am so sorry you are being treated so badly.  Hopefully this new suggestion will work for you.

    With love,  Cindy xx

  • Cat i fill for you, you could put in complaint , but that causes more hassle, for you, and at times, we do not have the strength, for all of that, on top of everything else.

    Can you  have a word, with you special nurse, that was so  up setting. for you.

    I hope you can sort this out, for your advantage, if it was not for patience, doctors would not have a job, that's for sure, and they should be taught bed side manners.

    Could you phone, Macmillan and speak, to the nurse there, and they will advise you.

    My daughter had to phone, them , they where brilliant, and sorted everything.

    xxxx

    .

  • He then said ' Well, as i you're Paliative care, just take the tube out and just let it heal ...... After all you have to face reality.

    Offffft! Punch in the face for that.  

  • Hi  

    Cat, I'm sorry to hear of this experience. How insensitive, to say that to someone. He's supposed to be there to help and support. I would consider a complaint as that type of behaviour is shocking. I'm sure your oncologist would be interested in this person's attitude.

    I hope you reach a decision and get a solution soon.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Hi Cat, I hope things get sorted out for you. You probably won't see this person again who is insensitive and quite frankly a numbty but I still think a report should be sent to his superiors because he is in the wrong job!

    I do think Ellie is right and it would do no harm to let McMillan know what's been happening and I'm sure they will do everything they can to help!

    Good luck!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Ellie

    My dietitian and SPN were there when he said this, they even tried to explain, but it fell on deaf ears. They kept trying to apologies to me once he had gone, but i said it wasn't their fault and down to them. After everything with that hospital apologies are not enough now. They need to get their staff 'sorted'.

    It was bad and upsetting enough for me to hear that,  but imagine him saying it to someone who felt even more low and poorly than i do at the moment.. what on earth would they have done ?? 

    When i feel up to it I will be reporting him. I am under the care of our local Weldmar Hospice rather than Macmillian

    Cat x

  • Wow Cat that sounds horrific! Hope you get some improvements and soon! 

  • I had to go to the said hospital for a scan yesterday, and was told that this consultant/surgeon is writing me a letter of apology. apparently the indecent is logged in my notes. 

    One of the nurses, by the look on her face knows of him and offered to free some air from his tyres for me ! 

    So it sounds like he has a bit of a reputation up there.

    Cat x 

  • I hope you are feeling better, and the business with the rig is being sorted so you can take in more food and fluids. What an awful man! At least he's writing a letter to you to apologise.

    Virtual hugs! Kate

  • Hi Cat, I think we can all agree that he didn't decide to write a letter of apology but was forced into it. At least he now knows this kind of attitude is no longer tolerated.

    The main thing is that someone steps up to help you with this situation now!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!