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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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To please, please ask for your positive stories of people getting well having been on HDU/ intensive care

985 replies

grobagsforever · 18/05/2014 12:30

DP was admitted last week and moved to HDU last night. They don't know what's wrong. He has fluid on belly, some kind of infection and impiared liver function. There is talk of moving him ti ICU. We seem to be waiting on endless tests. He is 35 we have a three year old and I am 7 months pregnant. I need him . Please tell me your positive stories of recovery from these situations.

OP posts:
InSpaceNooneCanHearYouScream · 02/06/2014 09:28

None the wiser??? Maybe re-read the op's post- it's very clear exactly what the situation is

Bunnytheeggrobat · 02/06/2014 09:30

Drank - I'm assuming that comment might have been aimed at me.

I just want to reiterate that I am not being defensive about my profession. I just find it unbelievable that a number are making comments such as 'he should be having a colonoscopy, MRI scan, PET scan, surgery' whilst knowing almost nothing about Grobags DH, his condition and the treatment of bowel cancer. You said that he is 'seemingly untreated' and I think seemingly is the key word here. I fear that these posts may be adding to Grobags' distress - making her distrust the medical team and making her feel that she is not doing enough to support him.

I really don't want to dismiss the heart breaking experiences of others on this thread but I don't think comments about negligence and the press are helpful.

Grobags - I hope you and your DH had a comfortable night.

CrystalSkulls · 02/06/2014 09:33

This reply has been deleted

Message withdrawn at poster's request.

TantrumsAndBalloons · 02/06/2014 09:33

Oh I didnt realise there had been an actual diagnosis gro

I think that you really need to find out why your DH is not receiving adequate care.

Do you know why the drain is needed? Why it has to stay in? Do you know what the next steps are?

I think it might be a good idea to spend some time with your dd though and let dhs parents do some of the care. She is probably worried and scared and needs you.

isabellavine · 02/06/2014 09:44

Sending you hugs, Gro!

I just wanted to say: there is no right or wrong way through this, but you can't be everywhere at once. If you need to be in the hospital with your DH right now, then you need to be there, end of. People - especially kids - are resilient and will cope.

I hear you on the creamy foods. I think they just try to get as many calories down as they can - but it's not exactly appetising, is it? I hesitate to offer you more advice, because it seems like you're being overwhelmed by people telling you to try this or that... but here goes... when my Mum had chemo, she found ginger helped with the sickness - ginger ale, crystallised ginger, ginger tea, basically any form that she could take (she got royally sick of it pretty quickly!). I don't know if this would work for your DH. It might be worth a try.

I also hear you on feeling like you are yourself dying. All I can say is: one step at a time. Sometimes the strongest thing we can do is simply to persist, to get through, to endure. Your children will need you in future, your DH needs you now, and those are powerful anchors to the world.

InSpaceNooneCanHearYouScream · 02/06/2014 09:44

Aaaaaaargh! Another one! Please read the thread and stop haranguing the poor OP!

InSpaceNooneCanHearYouScream · 02/06/2014 09:45

That wasn't aimed at you Isabella obviously

VSeth · 02/06/2014 09:46

The Op has said that her DH is in a private room not on a ward.

She has also explained that the drain has been left in as it is still draining a bit of fluid. She has also said that he is too ill for chemo or surgery. She has also said that she is happy with the care he receiving but is there to support her DH, as I would do in the same situation.

notapizzaeater · 02/06/2014 10:00

Hope things are a better today gro x

candycoatedwaterdrops · 02/06/2014 10:01

Please let's not tell grobags what to do when she is there, so she has all the facts and all the information.

(((grobags))) please take care of yourself too!

yellowdinosauragain · 02/06/2014 10:09

Excellent post dranksangria.

I hope you forgive me for briefly putting my doctor hat back on to try and address some of the concerns, summarised by Devere, in order that grobags doesn't feel she has to. This is based on my experience treating patients with terminal bowel and other cancers and it's various issues and not on any specific information about grobags dh other than that which is already included in this thread.

No treatment
He isn't well enough to have treatment of his cancer at the moment. Things sounds like they are slowly improving and it is probable that this is being reviewed on a regular basis. But until he improves chemotherapy and surgery could make things worse rather than better. If he is to weak these treatments could at worse kill her dh or make the time he has left more distressing with horrible side effects. Allowing time for him to become stronger will increase the chance of these treatments being effective because he will be more able to withstand the inevitable side effects.

long delays in sorting out anti sickness meds
I read the thread as lots of anti sickness meds being tried and ultimately because they weren't effective long term an infusion has started. Symptoms can wax and wane a bit which is what I read here as grobags has posted that the nausea is better, then the next post will say it's worse and then better again. This can make it harder as it will seem that a particular drug has worked so that will be tried again. In fact it may have been that it was the natural fluctuation of symptoms that is going on rather than any particular drug helping. Changes in doctors on different shifts with less continuity will make this harder to manage and this is shit but it's not going to change anytime soon.

no investigations done to find out why he is being sick despite the danger of an obstruction
I suspect that the initial scan which has shown the probable bowel cancer and any spread (which I'm presuming because this along with a biopsy that grobags has mentioned is how you would diagnose terminal cancer most likely bowel without further tests) showed that the bowel was partially or totally obstructed. He may also have had xrays to show this if the initial scan didn't show an obstruction. Even if he didn't, knowing that he has a bowel cancer you can make a clinical diagnosis of obstruction based on listening to his symptoms and examining him. This would be the most probable cause for his nausea. If he is not fit for surgery to bypass the obstruction then all you can do is manage the symptoms. So doing further scans and xrays wouldn't change what you could do for him so they wouldn't help. The only other thing that might help is an ng tube which is a fine tube passed through the nose into the stomach. This can drain off the stomach and bowel contents in a controlled manner rather than letting him vomit. This may have been tried or he might not have wanted this. If it hasn't been tried it might be worth suggesting this.

DNR for a young man without the OP understanding what was going on
Dnr is a medical decision. It is based on knowledge of the patients wishes or any advance directive but it is not a decision for relatives to have to make. In reality of course relatives and patients (if they are well enough) are involved in the decision and is extremely rare that there is any disagreement. I've never seen it in my career. I do agree that it's not great that the decision was made in such a way that grobags felt was a blur but she actually clarified in a later post that she did understand some of the reasoning. It is very very common that being given shocking news, like terminal aggressive cancer, means you black anything else that you are told. I'm sure many of you can sadly relate to this. So it might actually be that a very detailed discussion was had but grobags can't recall it. Equally it might be that her doctors were crap at communicating this very difficult decision. It may be something between both those. Regardless we're a couple of weeks on now. It would be helpful for grobags to know she can continue to ask as much as she needs about every single decision however small.

The OP sleeping on chairs despite being heavily pregnant
This is indeed shit. However wards aren't set up for relatives to stay and it may be that they just didn't have any alternative.

A drain that needs removing but isn't
Again on the face of it this is shit. Grobags later clarified that it needed to stay for now so less shit. And it is probable that they needed a doctor to make the decision on removing it rather than actually removing it as a many of you have commented drains are usually removed by a nurse.

The OP being in charge of his diet without support
I don't see this. He has been prescribed high calorie supplements. These are usually, but not always, under the guidance of a dietician. And either way have to be prescribed by a doctor. So this won't be without guidance.

Now he is aspirating which is incredibly dangerous in someone who is not able to get around.
Agree this is a potentially dangerous situation. And a possible consequence of vomiting with a bowel obstruction in a patient who is already weak. Good control of his vomiting, nursing in a semi upright position and possibly an ng tube as I described earlier could help reduce the risk of this. He may be having all of these to try and reduce the risk. If not these are things grobags can suggest if she wishes. Unfortunately it is just not possible on a regular NHS ward to have the one to one nursing to enable them to help him and reduce the risk of this each time he vomits bit the above measures should reduce the risks of him aspirating.

FGS the OP is about to have a baby and she is having to take her husband to the toilet and he can barely walk
He might have a toilet in with him. She might be using a chair to help him. She is already with him because she is concerned and doesn't feel able to leave him. Would any of you really call a nurse to help your dh with the toilet /his food /washing /cleaning his teeth and not help yourself? I wouldn't think badly of you if you did by the way as that is part of the nursing job but a lot of people would prefer to do these things themselves for a loved one and a lot of patients would prefer these intimate tasks to be done by someone they know rather than a stranger. If she is having to do these things because of lack of help that is shit. I'm sure a lot of people wait for help like this because nurses are so very overstretched. If this is the case then it would be worthy of a complaint and actually this will only change if enough people complain. But it's a different thing to choose to do this.

I'd like to clarify that I don't think grobags needs to stay all the time. Other family members could stay or there are always staff, even if they are overstretched. But I think it's entirely understandable that she wants to. It's probably worth thinking of other alternatives and trying to get home for some proper rest and time with her dd because this probably isn't sustainable longterm. But that is going to be a very personal decision for her and I can't imagine an easy one. And one that others in simular situations not manage differently because that is right for them.

It's probable that we're not getting the whole picture on this thread. Grobag's priority is I'm sure spending time with her dh. She is distressed, upset and sleep deprived. She probably can't remember what she has posted and what she hasn't. Encouraging her to question and advocating for her dh is very important. Encouraging her to look after herself so she is best placed to do this is also important. Nit picking of medical decisions less so.

Grobags please don't feel you have to update the thread with personal medical information. You don't. If it is helpful to continue to post then I'm here for you and I'm sure so is everyone else.

Well that was a mammoth post and I'm sure I've cross posted with loads of you. Thinking of you today grobags, as someone said it's the beginning of another week and hopefully the one where your dh is fit enough for cancer treatment...

DrankSangriaInThePark · 02/06/2014 10:12

Thank you for clarifying Dinosaurs Flowers

DrankSangriaInThePark · 02/06/2014 10:14

To add, I don't know enough about anything medical to know whether the treatment grobags' husband is receiving is adequate or not.

I just hope that were I to find myself in such a situation, that people who know more about what should be happening would tell me, so I knew best how to act to fight for the person I loved. And I'm sure that grobags must feel the same.

DrankSangriaInThePark · 02/06/2014 10:15

(aargh, now it sounds like I am asking the doctory MNers to put their white coats on after all! Blush)

yellowdinosauragain · 02/06/2014 10:23

Bunny and inspace I agree with you both. And have posted similar ranty posts upthread. In the interests of keeping this thread positive and supportive for grobags hopefully my explanations will stop some of the questioning.

Bunnytheeggrobat · 02/06/2014 10:35

Drank - of course it is good thing to make suggestions and encourage Grobags to question.

But why not say 'maybe ask the doctors/nurses if x is appropriate or would be helpful. Not 'OMG I can't believe he has not had X,Y,Z it's negligent' when in fact he has already had x,y or z or they wouldn't be of any use in his situation.

Bunnytheeggrobat · 02/06/2014 10:36

Sorry crossed post Yellow. I agree. I

TantrumsAndBalloons · 02/06/2014 10:42

But the thing is, with people clarifying points and posting explanations, no one bar the OP is actually there.

And for all anyone knows the ops DH could very well be experiencing sub standard care. Or he could be receiving the prefect care for his own situation.

No one knows except gro

I would have thought, in this situation, most people would be worried, scared, trying to get through each day. So isn't it in some way helpful for posters to suggest to gro that the doctors could be doing xyz or there should be more nursing care so she doesn't have to help, or that the hospital should be dealing, or trying to deal with the sickness rather than the OP looking for a solution?

I doubt anyone thinks clearly and rationally all the time in that situation. Maybe some if these suggestions or questions might be helpful.

AndHarry · 02/06/2014 10:55

Thinking of you Gro.

Thanks for the explanations yellow.

yellowdinosauragain · 02/06/2014 10:58

Tantrums I agree it's helpful for people to make suggestions as to what they found helped in their situation. And to remind grobags that she doesn't have to do everything. And to know that questioning doctors and nurses is important.

But the posts I find unhelpful and I think bunny feels the same are the ones that say things like 'meditation isn't going to help his cancer he needs chemo and surgery now!' 'omg why on earth are you having to do everything that the nurses should be doing it's scandalous' 'if I was in your situation id call the tabloids' and 'he needs an mri'

It's in the tone. And the presenting of suggestions as if they're fact and the team looking after him are negligent. The above questions phrased differently, would be much more positive and might help. So 'I'm a bit concerned that your going to get exhausted doing everything for your dh. Is there someone else who could help or could you let the nurses do more?' or 'I'm quite anxious that he's got a diagnosis of terminal cancer but nothing seems to be happening' is helpful and supportive. Lots of posters have asked questions like this and I think that's great. Because many many people on this thread have been there and know what might help and that support is invaluable. Haranguing her and demanding answers and stating as fact that his treatment is wrong is neither supportive or helpful.

I repeat, I'm not saying she shouldn't question. She should. Absolutely. But telling her what she must do and stating as fact that things are wrong isn't supportive. Because as you've said none of us except grobags know enough to know either way.

WheresMrMonkey · 02/06/2014 10:58

I'm so so sorry for what your going through, please know you have so many thoughts your way

TheCunkOfPhilomena · 02/06/2014 11:46

I would like to point out that there are posters on here that have been through (and are still going through) absolute hell and have been posting from these experiences and yes, sometimes that has necessitated asking questions and making suggestions.

I cannot imagine what they have been through and the fact they are posting at all should be appreciated as it is such an emotive subject.

There are also posters. like me, that have some experience of cancer (my uncle died from bowel cancer in 2006) but no way near the knowledge of these other posters. We are trying to ascertain what the OP's DH's diagnosis and prognosis is so as to make helpful suggestions.

yellow your explanatory post was your interpretation of what is happening, growbags has not been that clear. This may be due to shock but it is for her to say what is happening.

yellowdinosauragain · 02/06/2014 11:56

Thecunk of course it was my interpretation and not fact. I thought I'd made that clear. I stated that in my first paragraph. If it wasn't I apologise.

More then one person who has been in the same situation has posted they'd have found it very hard when they were going through this to be faced with lots of questions demanding answers and criticising the care being given. That was why I tried to explain. So grobags wasn't overwhelmed by all these questions and therefore overlooked the many very helpful supportive posts and experiences shared by people who have been there.

isabellavine · 02/06/2014 12:13

I don't think anyone is saying that posters shouldn't encourage gro to ask questions, are they? It's more that it's not necessarily helpful to her right now to have people screaming out (on the basis of relatively little information) that the doctors are incompetent, that something is clearly going wrong, and that she should start a national media campaign on her DH's behalf (because clearly she doesn't have enough to do!!).

I think every poster on this thread is trying their best to be supportive. However, sometimes it's gentle advice/support about the best way to question the hows, whats and the whys of an incredibly tough situation that's needed. And sometimes, it's just having people admit that it's plain shit that a young family should have to go through this.

Maryz · 02/06/2014 12:24

This reply has been deleted

Message withdrawn at poster's request.