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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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:
Original poster
grobagsforever · 28/05/2014 18:56

God, I'd give everything I have not to be on the level! But I am. DH hasn't been sick at all today which is wonderful. He's having anorher healing/meditation now and looks very peaceful and relaxed. We will hopefully have a targeted plan fir getting home soon where hw can get the rest he needs and get strong and defy the doctors. I am aiming to go home and sleep tonight and be there when DD wakes up in the morning.

I'm truly sorry for those who recieved less flexible visting hours etc than we have. I thibk the staff have all been very shocked by DH's highly unusual presentation, rapid decline and previous excellent health. They've probably also been swayed by my massive bump and ourbICU wedding. It's a fucking ridiculous story but it's all true.

OP posts:
TheCunkOfPhilomena · 28/05/2014 18:58

Grobag, do you know what his diagnosis is? It's highly negligent of them to let him go home without a diagnosis. You mentioned he's on a gastro ward now, maybe one of the nurses could read his notes and explain them to you?

Original poster
grobagsforever · 28/05/2014 19:02

Right, diagnosis. They are pretty certain it's bowl cancer but they cannot diagnose 100 percent without a colonoscopy which he is not well enough for. There is currently not value in an exact diagnosis as he's not well enough for treatment, either surgical or chemo. When he is more stable they will do more tests. He's a seriously unusal case but I am happy and confident with the care given. They know it is cancer from an earlier biopsy.

OP posts:
TheCunkOfPhilomena · 28/05/2014 19:02

Sorry for the double post.

Is DH on Frensham ward? I could come and see you tomorrow if you like as DS is with his DF?

Kormachameleon · 28/05/2014 19:10

This reply has been deleted

Message withdrawn at poster's request.

giraffescantboogie · 28/05/2014 19:23

Sorry to hear he is not well enough for the colonoscopy :( Can you argue with them that if he is well enough to go home then he is well enough for that? Saves coming back as an out patient to get it done!

expatinscotland · 28/05/2014 19:41

I would be questioning these medics. Pretty much everything could be done in ICU bar CT scan and MRI when DD1 was in a couple of years ago. She was vented in there, had bone marrow aspirations, ultrasounds, xrays, even ressused after a pulmonary embolism.

Best of luck.

PortofinoRevisited · 28/05/2014 20:05

How can they know he is terminal if they haven't identified what is wrong with him exactly? It sounds like you need some serious answers. Don't be fobbed off. Does he have life threatening secondary tumours? I would not be happy with "they think he has bowel cancer but are not sure". I would be frantic. Have his parents arrived yet?

ButchCassidy · 28/05/2014 20:15

Hope your ok OP. It must be an awful difficult time. Thinking of you.

expatinscotland · 28/05/2014 20:15

And if he is too unwell for colonoscopy, they are really dropping the ball discharging him.

Needs to be given an MRI, too or PET to determine where the mets are.

If he is terminal, does he have a MacMillan or other outreach nurse? Really bad policy to release someone who is terminal with no palliative care package in place.

Sorry, my only experience of all this is having had a daughter who died of secondary infection/pneumonia from cancer treatment in an ICU.

JessMcL · 28/05/2014 20:21

Don't know if you will read this OP as there are so many messages here already- but thought i'd share my experience:

My sister went into hospital 10 years ago now for a hysterectomy- basically the surgeon did a botch job and cut through her bowel and she ended up intensive care and nobody was sure what the end result would be.

She is still here to this day- she isn't perfect and hasn't worked since and is ill quite often (nothing serious but minor bugs seem to knock her out for a couple of days) but manages to keep up with her 3 kids under 8 (she adopted 2 years ago)

I hope there is a light at the end of the tunnel for you and your family

My thoughts are with you all.

MrsMaturin · 28/05/2014 20:22

If he's stable enough to come off ICU and perform some of his own care with help then he should be stable enough for surgery and if it's a bowel tumour then surgery should be a priority. I had a relative who got 4 years out of a terminal bowel cancer diagnosis. Prompt (as in almost immediate) surgery was a key factor on two occasions. I know you feel happy with the situation grobags but a patient in the situation you describe needs more than alternative therapies right now.

member · 28/05/2014 20:27

When did he have the biopsy?

I know you've had lots of replies and probably can't reply to them all but what are they doing nutrition wise?

Original poster
grobagsforever · 28/05/2014 20:30

He is not being discharged. We are working towards that. We are at least a week away....

OP posts:
member · 28/05/2014 20:33

And agree with MrsMaturin; juicing & meditation seem wholly insufficient!

CheifSnotWiper · 28/05/2014 20:33

My heart is breaking for you and your family, I'm so sorry Thanks

DrankSangriaInThePark · 28/05/2014 20:40

How is your little girl in all of this? Is someone able at least to bring her to see her Daddy?

Are you eating properly? Do take up any offers of help from RL friends or MNers in the area if you feel you can. These are the moments when MNers really come into their own.

Deverethemuzzler · 28/05/2014 20:41

I just can't get my head round how incredibly different adult oncology is from paeds.

My daughter was in a state of collapse when she arrived at the hospital but they still did bone biopsy, lumbar puncture, bloods, scans and ultra sounds.

It is how they found out what cancer she had and what protocol to put her on.

If they had left her to get stronger she would have died there and then.

They had no idea of her prognosis but they put her on the high rate of chemo. She was only 12 and tiny but they gave her the treatment.

It seems incredible that they would leave such a young man with no treatment and not do more to find out what is going on.

Its pretty scary tbh. I had no idea this was what it was like for adults Sad

expatinscotland · 28/05/2014 20:49

Truly frightening indeed, Devere. As you know, my daughter was also admitted with severe septicaemia in her little body due to her cancer's compromising her immune system and they did loads of tests on her. She had to have GA for some of them, too, even though she was very ill. We were warned how dangerous this was but there was no choice, a central line HAD to be inserted for chemo to begin, and fast.

From time to time, too, the ICU was closed (we were in a side room as she had no immune system) for them to perform open-heart surgery on patients far too ill to leave the unit.

They can do many procedures in ICU, but not CT or PET scan or MRI, unfortunately.

I'd be frightened at so many visitors being allowed in and really query that. Patients in ICU are under stress and many have weak immune systems. Infection control needs to be a real priority, especially with cancer patients.

expatinscotland · 28/05/2014 20:54

SO true, Drank! DEFINITELY take in offers of help. The night DD1 was diagnosed, three MNers showed up at hospital with food, supplies, support. This carried on the entire time she was ill. I cringe to imagine how we would have coped without their help.

When she went into ICU, I will never forget how MNers rallied round to help us, one who is a medic even came and took our laundry home to do and to hold my hand when the consultant came to see me as DH was doing nights since parents were not allowed to sleep with our child, only sit in a hard chair and one MNer was in every way a mother to DD1, even there when she died.

I strongly encourage you to take up all offers of help! MNers will even come to the waiting area.

FrancesNiadova · 28/05/2014 21:00

So sorry you're going through all of this, grobags.

Life can be crazy and seem unreal at times. As I mentioned upthread, I was in HDU after my mastectomy for breast cancer. About 18 months earlier I became disabled after an accident. I'm in a wheelchair, recovering from more major surgery now: my 8th operation in 3 years & my 3rd in the last 5 months. I've said many a time that if I wasn't living it myself, I wouldn't believe it. It's like some Kafkaesque plot at times! Having experienced a complete life turn around myself, sadly I do find your story very real and believable.

Once your DH has had his sickness stabilised, will they be able to start a treatment plan then? You could phone Macmillan for a second opinion, I found them very helpful with questions to ask my oncologist: things I'd never know to ask myself.

Crystal, I'm so sorry that you've had such a day of it & you feel upset. In my earlier post from this morning, I was simply concerned that the use of the word jealousy might hurt grobags feelings. This is an emotive thread and at no time was my aim to derail it or cause distress to you. Quite the opposite. Having been on the receiving end of some very thoughtless comments in RL myself, I was just trying to protect someone else. May I offer my condolences for your loss.

ThanksThanks all round & have a good sleep tonight grobags. I really hope that you get some answers soon. I remember being in the waiting room as the worst time. Once everything was diagnosed & the treatment procedures were begun, I knew where I was, what I was facing & what was likely to happen next. I began to make sense of it all when I got to that stage, I hope you can too.

I'm praying for a miracle for you Thanks

WandaDoff · 28/05/2014 21:31

My Dad was diagnosed with lung cancer with secondary cancer in the brain & spine. He fell off his bike & hit his head & was taken to hospital for a brain scan.
They said there was an irregularity & sent him for an MRI scan, they then admitted him. All on the same day as his fall.
The next morning they told him he had stage 4 lung cancer & was unlikely to live much longer.
It was Frimley Park he was in, in Surrey. The staff were really, really nice there so helpful, I wonder if it's the same one? xx
You can PM me if you want, if you don't want to say on here.
So very very sorry this has happened to you Thanks Thanks

Rainicorn · 28/05/2014 21:46

Gro, I would question the colonoscopy.

As I said earlier upthread, mil was very ill a few weeks ago, her stomach swollen up as if she was 9 months pregnant. They managed to do a colonoscopy without anaesthetic and discovered bowel cancer. They also did a ct scan. It is possible. She had an operation to remove her bowel and all cancer when the odds were only 25% of her making it.

If your DH is eating and well enough to meditate then the medical staff should be doing more tests than they are doing.

LizaTarbucksAuntie · 28/05/2014 22:46

Grobags,

I've followed this all the way through and I realise that you're not asking for advice on how to cope but I really would urge you to sit and talk with the Macmillian nurse. She was a Godsend to us when my FIL was diagnosed in 2011. The level of help she gave us in ensuring the whole family were supported was incredible. She made sure we ALL understood what was going on, what diagnosis/prognosis we were dealing with (and in his case it was also a completely unique case that ended up being written up for journals as it's had never happened before in the whole history of his particular cancer) It seems there is a huge cloud of doubt over the whole thing and to be fair it sounds like you're being fobbed off which is no good for you, your partner or your 3 year old daughter because you are going to have to cope with his illness when you get home.

I did the at home nursing and I know how hard it is, how bone weary it is dealing with everything. Please don't underestimate the level of support you will need and that his parents will need, you will need to be the person who co-ordinates all of that when he comes home so you will need support as well. your daughter will need people to rely on because she is going to be scared and confused.

Your Macmillan nurse will also be able to provide you with the sort of information you have requested in this thread as well.

yellowdinosauragain · 28/05/2014 23:15

Please everyone. I understand you're all trying to help but do you really think it's helpful to Grobagss to question what treatment her dh should be having? She has said, more than once, that she is happy with his care.

I know it comes from love and support, and that's brilliant and Mumsnet at its best. But his doctors and grobags know a lot more about what is going on than any of us can. And as a doctor myself nothing she had said sounds unreasonable given the context.