I've gone into complete panic mode. Verging on hibernation mode. Please help.

[JackieandJudy]

Dh is ill, and has been since just after we met. Over the years we've had so much to deal with, and I think it would be fair to say that I have dealt with most of it reasonably well (I'm generally ok at coping when things are going wrong, it's usually afterwards I have a bit of a wobble).

The situation is slightly different this time in that, instead of finding ourselves in the middle of an emergency, he has a planned operation coming up for next Monday. And I'm so bloody scared. The odds we have been given are not good. I can't stop thinking about Monday and am constantly doing the "what if ...?" thing. The elder dc know it's serious stuff coming up and are scared themselves, hence are looking to us for guidance and reassurance. I've tried but today I'm all out of trying and have locked myself in the bedroom. Smallest dc knows Dad has to go to hospital but is oblivious of the wider implications.

I'm shaking constantly. I keep crying at random moments (yes, that was me in Sainsbury's who cried when I dropped the apples!), I can't do this for another week. But I have to. I don't want to talk to rl friends as I will cry and I don't want anyone feeling sorry for me anyway.

But I'm happy to listen if any of you lovely ladies have any ways to help me get through this week, and possibly after.

Really nice to hear from you J and J. Glad to hear things are ok but obviously still a way to go. Stay strong, you are doing brilliantly. Again, don't worry about letting friends help, they benefit from helping you too - they feel all warm and fuzzy, believe me. My friends have been invaluable in difficult times in the past, it makes us even stronger.

Good luck with the 19th birthday celebrations, I hope your ds enjoys his day!

Izzy, thank you for yor endorsement - I never ever want to make JandJ feel worse than she does already, but hindsight gives us all 20/20 vision!

I'll share a funny story with you all now.....

When DH was about to be discharged home to die in his own place (terminal) the hospital realised that his cancer steroid medication had induced diabetes at the highest level. I asked DH what HE wanted to do. "I want to come home love" was his answer.

So, I had 3 consultants gathered round DH's bed and I gave them 48 hours to get him sorted and then I was taking him out on his wheelchair come hell or high water. (I did stand in the corner of the ward whilst I did this - but I was strong and determined.) I said I had already started to dig the escape tunnel and I would have DH out by 4pm on Wednesday. If they chose to help me get him out - that was their decision.

I gave them until 4pm on Wednesday as a warning shot (this 'show down' happened on the Monday) and no consultant in the world would have kept my DH separated from me in his last days. They tried to do medical language at me..... I argued back.... DH smirked.... It was DH's oncologist who finally spoke to the other two consultants and said, "Gentlemen, I advise you to listen this lady. She is determined and she actually knows the best care for her husband. She is intelligent and capable. Can we find a way of supporting her?"

So I got DH home for his final 3 days on July 4th 2001. He died on August 19th 2011 - so who had the last laugh? We got 6 weeks of happy times together - doing the things that DH wanted - his estranged children visiting and him meeting his grandchildren a couple of times. I wouldn't change it for the world.

But being faced with 3 consultants is intimidating. I had just reached the level where I wouldn't allow anyone else to be in charge of DH's care other than me (and him).

I share sw's ability to prevail on medics to bow to my will pull rabbits out of hats when need arises but, in this instance, your dh's conditon is no more terminal than that of all of us who don't know when our number may be up, JandJ.

Nevertheless, this hospital's failure to provide the dialysis your dh requires and the bed in the renal ITU that will, presumably, minimise his risk of infection after his elective - as in a pre-planned non-emergency - prolonged and life-threatening operation is tantamout to criminal neglect and it seems to me that the Clinical Director, and others of his ilk, should be forcefully reminded of this fact before your dh's recovery is further impeded by this NHS Trust's apparent inability to run a tap make appropriate provision for its patients.

If any impasse remains tomorrow let them have with it both barrels, honey, and assure them that they will have their 5 minutes of fame be named and shamed to the press, to your MP, and to the Secretary of State for Health (currently Jeremy Hunt who, from what I've read about him, knows fuck all as much about health as he's gleaned since his appointment to the post which, I suspect, is not a lot in terms of the hospital/doctor/patient interface) and that they'll have a date with the High Courts of Justice destiny in the not too distant future.

Every virtual stitch is a message of love, strength and hope to you both. I'll be thinking of you especially on Friday, 19th birthday congrats to DS, he should forge forth proudly to uni, as you are all showing, life is for living xxx

Thank you for taking the time to update J&J, I'm so very glad to hear that your DH is getting better bit by bit. I don't know a lot about complaining about care received, but I agree with everyone else that you should definitely kick up a huge stink!

If I don't check in again before then, please pass on birthday wishes from me and mine to your son!

Xx

Hello again everyone, esp JandJ. :)

I've decided to lurk no more.

As I said in my earlier post I have been following this thread from almost the beginning and what struck me was jsut how much love JandJ and Mr JandJ have for each other, their DC and for life. Truly amazing people! JandJ, as others have said thank you so much for your latest update. I hope your DH continues to take baby steps to recovering. Also, Happy Birthday to your DS for Friday. My DD will be 5 on Thursday and it is a bit shocking the way time just flies by sometimes. I suppose we all get bogged down in the day to day stuff of life and birthdays are great reminders to stop and take stock of how amazing life just is. I wasn't ever so bothered about my own birthdays, but have children certainly makes me appreciate things more than I ever did. Anyway, I'm rambling. Sorry.

I'm popping back on to say hello but won't be going off again, well not too far anyway. When I first posted I was a bit worried that I didn't want to intrude but, truly, this thread has been so good for me. And the welcome from some of you was just amazing. I'm so so pleased that I did post as I don't feel quite so much like I'm eavesdropping anymore. I feeling very much part of the glittery circle of hope and love and good wishes and strength for JandJ and her wonderful man and family.

I can't remember who it was who described the lurkers as seals. It was so beautifully said and made me a bit weepy. So many of the posters on her have such beautiful ways of writing and expressing themselves that it's actually such a big part of my life now to follow this.

We were on holiday near St Ives and actually went crab catching in st ives which was such a fun experience. There's a stone pier and people gather there at low tide to catch crabs. They are put back into the water again at the end but get collected in a bucket of salt water and the point is just to see how many you can get. Anyway, while we were there, a truly beautiful seal actually did come up to the pier, and swam around for a bit, probably wondering what all of us loony humans were doing catching crabs and throwing them back. Then another one came along to have a look. Honestly it was brilliant to see and they were only about 2 metres away from where we were. One of them perched his tail (is that the right term?) on one of the rocks on the sea bead and stood upright with his head poking out of the water, just watching us. It was just lovely to see. When I read the seal comment on here, I actually felt really proud to have been likened to one of these beautiful creatures. I just felt I wanted to share that with you all so I hope you don't mind :) I'm going to post some pics of the seal on my profile in a minute.

Thanks to everyone who said a hello to my moment of delurking, I felt very welcome :). And thank you to JandJ, for letting us all in to hold your hand and those of your darling DH at this time. JandJ, I'm a bit like you and don't really like asking for help, although I really wish I did sometimes, if that makes sense. But isn't it amazing that here on mumsnet you asked for help and here you are now, surrounded by the love and best wishes of many many many friends from all over the world.

JandJ, I'm not sure where you are but I am in south west london, so if there's anything practical I could help with, then please do ask. I'd love to be able to help if I can.

Much love to you all. xxxx

A quiet chat with pa over one of his Vermont specials - recipe to follow at a later date - has worked it's usual soothing effect on my bp.

Hi again, mumat, come and sit on the bench over here - but pour yourself a coffee or a hope on a rope from those thermos flasks on the side first.

I see you've bought colourful seal and crab patches with you. Where shall we place them? We've got a tree of life, a river of hope, hands across the ocean, a native american totem, a kiwi bird, a basket of kittens, a border collie, a university dreaming spire, an assortment of saints, a cocktail glass, a rocky mountain horse, a christmas cake, a four-armed Hindu god, lots of sayings and quotes, and someone has lovingly embroidered this patch with hugs and kisses ... my goodness, there's so many - where we shall we start?

How about we begin sewing some lines of longevity on these plain patches until the others drop in?

Im so pleased to hear from you J. Your courage is truly awe-inspiring. Real courage, Im told, is being afraid, but going on anyway, and you are doing that every minute of every day.

We will continue to surround you with our sparkling circle of light, and love and hope, for as long as you need us to.

I am still holding your hand.......Much love.

Hello Mumat, so glad that you have joined our circle.....welcome.

Izzy, can we get my little Luna in there somewhere? I miss her so very much.

O yes, of course we can, FAN, no problem - it's going to be a truly kingsize quilt

Hi izzy

You sound so lovely :)

That's some list. I can imagine the end result being something quite spectacular.

I could actually quite happily sit and sew and chat with all the lovely ladies on here. It's good for the soul to find so many lovely, kind people in one place I think. I would love to join you on that bench. It sounds so lovely and picturesque where you are and of course with your Pa and his creations I can't imagine how hard it must be to leave to come back to your other home. It sounds like you have a difficult decision to make so I hope my ramblings aren't too much of a distractions.

I haven't tried the hope on a rope or the other of your Pa's creations but I love the idea that supermakets up and down the land have a run on the ingredients the day after the recipe has been posted on here. I have a best of Dean Martin cd on my Ipod, so I look forward to swaying while shaking

I'm curious about your rituals to the spirits, the godly kind rather than the % proof . The image of you and your horse in your beautiful surroundings in quiet contemplation sounds so spiritual and healing. A situation I hope to one day find myself in.

So what are your plans for today, or is it tomorrow already for you?

xxx

I'm no good at sewing/knitting/crochet I'm afraid, but I'd like to contribute a patch of Avalokiteshvara, the Buddha of Compassion, to represent the enormous quantity of compassion on this thread and also the hope that the Clinical Director remembers their compassion for all living beings and most particularly the ones in his/her hospital who need appropriate dialysis!

Adding my weight behind SW and Izzy, don't worry about being pushy with the management JandJ. Sadly, in the NHS at present many devoted and caring frontline staff are becoming burned out and have become disheartened. If you let them know you're not going to settle for 2nd best for your DH, they are more likely to keep pushing for a renal bed.

Thinking of you all

Thankyou ForeverAutumnNow :)

So sorry to hear about Luna :(

I'd like to add my own patch if that's okay?

My patch is of the Goddess Hecate (my patron) and she's known as a Goddess of crossroads and guardian of households among other things. I think that in her role as guardian, she would be perfect for the virtual quilt :)

Here's a link for anyone who's interested:

www.goddessgift.com/goddess-myths/greek_goddess_Hecate.htm

Xx

www.goddessgift.com/goddess-myths/greek_goddess_Hecate.htm

Thank you for the update today, JandJ. You are all showing huge strength in very trying conditions.

Holding you all quietly in our hearts, through the night.

All godesses are especially welcome, Raven, particularly Hecate who, in a previous incarnation was most probably Heket, Egyptian goddess of childbirth, and founder of rl mumsnet

After her sojourn in the Greek pantheon she became known to the Romans as Trivia - but, as your link shows, there's nothing trivial about She who appears when the ebony moon shines, or when a quantity of moonshine has been imbibed offered as a libation - speaking of which, I got it right earlier and Dhanvantari is on the case

That's a beautiful depiction of the bodhisattva Avalokiteshvara you've donated, Merlot. His mantra 'Om Mani Padme Hum' is possibly the most well known and most often used in meditation. In far eastern buddhist tradition, Avalokiteshvara was reborn as the bodhisattva Kwan Yin (Guanyin), the goddess of compassion.

Interestingly.. well, interesting to me that is the Fall of man was caused by a woman and a snake, whereas buddhism has it that the world was saved by a woman and snake. There's a turn up for the judeo-christian books. All things considered, I think I prefer the buddhist version of woman's role in the world.

The gods are, of course, are not constrained by any limitations imposed on mere mortals. Changing name and sex is par for the course with them, but tomorrow I shall make an offering to the Celtic god Grannus and the goddess Sirona, an apparently heterosexual couple who are the deities of healing and healing springs.

I do a fair amount of chatting away to him contemplating when I'm out with my horse, mumat but the air is far from spiritual when I get whacked by a low lying branch or upended into a patch of poison ivy, as can often happen when I'm away with the fairies deep in thought

And so we continue nattering while quilting, and nattering while not quilting, until you have time to join us again, JandJ. As always, the toast is to the very good health of you and yours.

I need you all to come and, well I'm not sure what exactly yet, but something forceful.

Dr Hero managed to get dh four hours dialysis yesterday in the clinic at the hospital (he usually dialyses for six hours every other day, but four hours was obviously better than nothing). The clinic was very busy and undermanned, so dh offered to put himself on and take himself off the machine to ease some pressure.

In the event, a nurse came to take him off - and tripped over his tessio line (which is implanted in his chest, and through which he dialyses) and yanked it out! To re-insert is a surgical procedure but they can't open him up until they sort out the clotting issue, which isn't easy. Besides which, he's just been opened up and doesn't want to be again - yet another general anaesthetic, more risk of infection etc. However, he obviously needs to dialyses or his body packs up. His blood pressure is still worryingly low, and drinking would help this. When he is able to dialyse regularly he can be slightly less disciplined about his fluid intake (he shouldn't be, but after all these years, knows how his body works) and so could drink to help the BP. Now he's frightened to drink in case he overloads himself, but frightened not to in case his BP worsens.

He is distraught and discharged himself from hospital last night. I wouldn't go and fetch him as I thought it would be unsafe for him to be at home, but a friend of his brought him back. He says he will go back in when the hospital come up with a plan to manage the situation, but in the meantime he's staying put. He spent all night on the sofa as is too fragile to manage the stairs - even getting off the sofa to use the toilet was like a thirty minute work out he said. He's not an overtly emotional man but keeps welling up every time he talks and thinks about what has happened. Im worried about his BP, the clotting, risk of infection etc, and of course, lovely renal consultant is on holiday this week. There are plenty of other docs around but none who know him as well as his consultant, and we don't know who is managing his care in the meantime. A bit later on this morning dh says he will ring Dr Hero for advice - he's a cardiac bod and a surgeon so unlikely to be able to help personally, but may be able to direct us to the person who can.

J&J, I'm here and have just read your post to my DH and we are both sending our thoughts straight to you. More in a moment but I want you to get this Now!

Thank you Homebird, appreciating your thoughts very much (and, of course, all others). I have to go and do school run now, so don't know when I'll be back again, but felt I wanted to commune with my life-saving goddesses and butt kickers.

I haven't mentioned the name of the hospital all this is going on at before but I'm thinking you'll all be thinking this is a small cottage hospital somewhere. It's Hammersmith Hospital, so part of Imperial College Trust, surely one of the biggest in the country? And, would it be indiscreet do you think, if I told you Dr Hero's name - purely so you can google him (if you're interested) and see how wonderful he is. Don't want to do anything I shouldn't though. He gave Dh his mobile number yesterday so I'm just becoming a bigger fan daily.

Will try and be back soon, but don't know what's going to happen now. Please can someone think about a meet-up cos, even if things don't turn out well (they will, they will) I want to meet you all (well those of you who want to meet that is). Am I being a little bit sensitive and emotional to say I feel a connection with all of you who have opened yourselves up so much for me and my family? Homebird and the rest of you who live abroad, start saving for the airfare now!

DH discharging himself must be a shock and very scary. I'm trying my best to get my head round it but you know, I might have done the same thing myself in that situation. I doubt it's too early to call Dr Hero and I imagine he'll not be too pleased that his triumph patient has walked. I'm sure he'll find someone with some great skills and knowledge to take over DH's care so just call him and don't stop until you get to speak to him. Have you got a number for his secretary? They are usually great at getting hold of their consultants and she will know all about your DH. A quick explanation may be all it takes to get him working things out for you.

I am so angry about the lack of basic care for his renal problems and the risk DH has been exposed to by sheer overwork and tiredness of nursing staff. I bet someone under less pressure wouldn't have been as likely to trip with such awful consequences. I think that complaint has just reared its head again though. The knock on effects of the delays and the lack of planning for DH's complete health issues including the renal ones have put him at unacceptable risk on top of the heart operation.

I am personally sending clarity to you both today. A very wise lady said to me recently that one of the best ways to make good decisions is to decide what you want to happen and why it is important. A list of those things would be useful in talking with the hospital. Then think through what options you have, even the obviously rubbish ones, and use that to come up with a priority order for a course of action. I know you can do it. You and he are so strong, and kind, and are such an amazing team. He's made a unilateral decision to leave the hospital but now you need to work together. If he's not quite in balance because he needs more dialysis then he may not be thinking quite straight.

I'll be here for the next few hours and the UK is getting up now. We'll all be here and sending calm and love and clarity. Deep breath J&J, you can do it.

Oh bugger!

I'm de-lurking to just send love and support to you both here. It sounds like dh has just gone into panic mode and headed for the safety of home. Do you have a good Friend that would be able to come and talk him through this? Someone who is able to just calmly go through the options with him?

This might have been an accident but it clearly is the hospital's responsibility, can you talk to the clinical director? Is there anyone who could advocate on your behalf if you are too stressed to do it?

I will be keeping a watch on the thread and sending all the positive vibes I can muster.

Ouch poor DH of all the luck no wonder he feels safer at home, worrying as that must be. Do hope the more capable and useful of his medical team are in touch. Holding your hand, sending your DH positive vibes.

JandJ, I can see exactly why your DH self-discharged, he must be seething with frustration and fear, but I'm really worried by this situation.
The truth is, the hospital will be so busy and overwhelmed with really unwell patients that if your DH is not physically sat in front of them, the staff will just move on to the next patient in line. Self-discharging against medical advice (even when justified by the lack of coherent care and numerous bungles) absolves the medical and nursing staff of all responsibility for him - that's what signing self-discharge papers means.

There will be a way of temporarily dialysing without having to put the tessio back in - any central venous line will do for a few days/weeks - and dialysis is by far the most important thing medically for your DHs recovery at the moment (based on what you've told us).

You're right in thinking Dr Hero is your best bet, as he obviously has a personal bond with your DH. If you cant reach him or he cant help immediately, please don't wait around for him to call back -he may be in theatre all day or be out of the hospital. In the absence of your usual renal consultant, plan B is to speak to your renal nurse specialist if you have one. Failing that, speak to the on-call renal registrar (you will need your GP to get involved as on-call teams can't usually admit patients directly without a GP referral due to the way funding for admissions works). If you're getting nowhere by early afternoon, you need to try to persuade your DH to go to A&E. I'm afraid otherwise it will be a case of 'out of sight, out of mind'.

Sorry to go all medical and ranty on you. I'll be thinking about you and checking the thread during the day. Sending strength and hope and concentrating on the image of a freshly made up, empty renal bed for your DH.