Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

At last it seems you're making progress Do not be afraid to show anger and frustration( I use the term icily polite!)
My thoughts very much with you and DH

Really pleased (or at least as pleased as one can be in such a challenging situation) that you’ve taken a few more steps towards diagnosis this morning.

thinking of you x

Well done OP, and well done BIL as I hope his letter's made the registrar sit up and listen. Let's hope they're nearly there now with finding out what's going on.

On a side note OP, I hope you get good supervision for your role in bereavement/illness support? Can be excruciatingly difficult when it's all a bit close to home, so I hope you can chat it all over with someone and work out what's fair and reasonable to expect of you at this time.

Oh you are doing brilliantly @MyCake even if you don't think you are.
Keep going with that assertive anger and get the answers you all deserve.

Gosh @MyCake you really should not have to be pushing so hard, just for your dh to be taken seriously. You are being such a brilliant advocate for him.
Do not move today until all tests you want, have been agreed.x

I have been following but not posted.
While not to the same extent as you I had to watch my DH get fobbed off by Drs and eventually he became so worn down by it all that he stopped standing up for himself (and he's usually a very forthright bugger).
I attended the hospital with him the next time I had to call an ambulance for him and I read the Dr the bloody riot act. Finally he got a proper diagnosis and treatment.
It really is very hard to gauge how much you should push and how much is normal waiting time etc, and I often second guessed myself. But I found that after I had put my foot down once I was listened to after that.
I really hope you see more proactive care for your DH now and I am thinking of you because it is SO frustrating and exhausting watching someone you love suffer while medical professionals seem to just exude incompetence.

I've only just seen your thread and I can't believe what you've all been through. Pleased for you that today has seen some progress and everything crossed that tomorrow brings more.

Hi - so glad to read your update. I am a prayer...so I have been praying all weekend that you find someone to take your concerns seriously and get you some answers. Sorry about the collapse but maybe it is good and caused him to get more attention. Stay strong, love.

It feels like you have had another day with no answers at all and yet more tests. Have they been able to rule out anything that was worrying you or give you any indications of what they are thinking now? Worrying, frustrating and making you both upset and angry I would think.

Was the Dr today at all concerned by DH's collapse?

Oh OP I sympathise so much. my DIL has been unable to work since May due to vomiting severely, but randomly, to the point of collapse. No one in the hospital is looking into what is causing it meanwhile she is living on protein shakes, as she is worried about how much nutrients she is getting. Tired and weak the whole time she is just getting fobbed off and passed from pillar to post.
I sometimes wonder if these professionals understand how it is for the patient when you just don't have any diagnosis.
Hope you get some answers tomorrow OP

Glad you're finally getting somewhere. Hopefully further progress tomorrow after the meeting.

Glad to hear this update, but I'm still so angry for you all, that I want to scream. Fingers crossed and prayers that there will be real action this time.

You are amazing, OP. Hats off to you; not many of us would be as strong as you are.

How did the day go yesterdaymycake? We are all thinking of you., sending you hugs.

Sorry wrong thread

I can’t even bear to write the details as I’m so frustrated, but we had a call today which dismissed some of his symptoms - particularly about his raised lymph nodes- after a discussion between 2 doctors, 1 of them has never even examined dh.

He also casually mentioned increased protein level in csf which we’ve googled and can cruelly be very serious. That doctor is handing everything over to the consultant who we will speak to next week when he gets the rest of the LP results and the PET results. I am going to demand a second opinion from the consultant about the lymph nodes.

At least things are moving and the scan has been booked very quickly. Should have a full set of results next Tuesday. PET scan is on Friday.

I have a significant worry about one of my dc too (not related to the dh worry) and need all the hugs, prayers, strength you can send. I feel numb and helpless. I just want to protect the people I love.

Work is busy this week but not with particularly sad things thankfully so I’m
holing the distraction will help.

*hoping

Wishing you strength and energy as you continue this battle for answers and help for your beloved husband, and hoping you can take a breathing space for yourself her and there from the relentless worry.

Pleased to hear things are at last moving with dh and sorry to hear you have a worry about your Dc. Are you able to talk to anyone on real life about all this, are you getting support for anyone?

Sending you and your family much love and strength @MyCake . What a torturous journey of worry this is and I hope so much that this is all it turns out to be. Be gentle with yourself and I hope your work can give you some fulfilment and the distraction you need x

Sending you so much strength for you, DH and DC. Yet another p week’s agonising wait seems so unfair - it must be unbearable.

ah, @MyCake more waiting and hoping. Sending you strength and patience to get through this, again. It is agonizing, you must be besides yourself. It is a miracle that you are keeping going.

I am so sorry about your DC. I shall send strong wishes that it is resolved soon, without dire consequences. And flowers and a hug to you.