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Original poster

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

1000 replies

MyCake · 13/12/2022 04:32

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.

OP posts:
2018SoFarSoGreat · 12/01/2023 14:30

Oh OP you are so far from being a bad person! The weight you are bearing is unsustainable for any human!

Sending hugs and strength, and a strong, if virtual, shoulder to lean on when you need it 💐

Original poster
MyCake · 12/01/2023 16:01

I rang up and spoke to the neurologist’s secretary today. I cried a lot. She suggested A and E but she will refuse to go and understandably so after the hours he has spent waiting. He’s too weak to sit in an A and E chair.
The results are back but haven’t been looked at which means they are not marked as urgent. I guess this is good news in a way but it could still
be something serious just not immediately life threatening.

OP posts:
SweetSakura · 13/01/2023 07:29

Could you get him to GP rather than a &e? They can then at least check him over and could refer him directly to a ward if they felt he needed hospital care.
I get the thing about not being able to sit in a chair, when my symptoms are flaring I have to be lying down.

Thinking of you, all your reserves of patience must be totally exhausted by now!

Nchangeagain · 13/01/2023 09:19

Don't beat yourself up. You've stepped up and are taking care of your dh and making sure things keep running smoothly. That's a huge amount of responsibility when your world is crumbling around you.

Just keep putting one foot in front of the other and you'll get there.

You are stronger than you think. You've had this thrust upon you and you're dealing with it and keeping up a brave face for the children as well as working and running the household and being a positive support for your dh.

All that takes strength so don't be too hard on yourself. It's only natural for there to be days where you struggle; you're only human, and the same goes for your dh.

You know he doesn't mean what he said; he's scared and taking it out on the one he feels safest with, and that's not to excuse it, but you've said yourself you know he didn't mean it.

Try to focus on small positive things, even just spending time together watching a movie. Also, try to find 10 mins every day to just breathe, relax and collect yourself, even if you have to hide in the bathroom to get it.

Good luck. You're doing amazing 👏🏼

Princesspollyyy · 13/01/2023 10:34

He sounds like he's too poorly to be at home, and needs to be admitted to hospital. It must be so difficult for you.

Ulysses · 13/01/2023 11:15

FWIW the GP might be able to get fast track to the assessment unit at hospital rather than A&E. I had to take DH there before Xmas and admittedly it was still a long wait time of 4 hours before he had a bed but in that time he was given X-rays and blood tests were underway.

it must be so agonising for you all though knowing that the results are there too.

SBHon · 13/01/2023 11:22

Could a GP do a home visit to plan a route to get him into hospital?

He’s too weak to sit in an A and E chair.
For what it’s worth this happened to me and it was awful but got me into hospital. So if that’s your main goal and ends up being the only route in then don’t rule it out completely. I was carried into a car, then out of a car, placed on a chair in A&E where I just crumpled down onto the floor. I just didn’t have the strength to hold myself up.

I’m sorry you’re all having such a horrendous time.

Mirabai · 13/01/2023 11:32

Fwiw if you decide he does need to go to A&E call an ambulance rather than take him yourself. If he’s not well enough to sit up he needs to be transported and on a trolley - that will also get him triaged more quickly. If you take him yourself they will assume he’s well enough to sit it up in the patient waiting area for hours.

Binfluencer · 13/01/2023 12:47

Dear OP

I've been where you are and all I can say is, yell harder at the hospital, go to A and E if you can, anything at all that gets him attention.

Do you know what type of consultant you need to review results? Could you put the fee on a credit card or even crowd fund it?

You're doing an amazing job, you Will get through this.

Original poster
MyCake · 13/01/2023 22:41

My BIL is a consultant in a different hospital (not a neurologist) and is going to ring up Monday morning. My GP has managed to confirm the blood tests were normal but they haven’t got all the scan results. At least the GP bothered to get in touch with him.

I am really low and panicky now. I keep crying (not in front of him) and it’s hard with work, dc, the house etc, especially as some nights I’m not sleeping well.

OP posts:
Mirabai · 13/01/2023 22:44

When you say the blood tests were normal - originally the inflammatory markers were high - does the new results indicate they have normalised - or are these recent tests for something different?

Reigateforever · 13/01/2023 23:58

Please try to eat and drink and look after yourself to keep your strength up. Thinking of you, hugs.

Kamia · 14/01/2023 07:44

Your'e doing amazing, you're keeping up with a tough career, especially teaching high school children is hard and raising your children essentially alone. You're taking care of your sick husband, running your household alone. You're a very strong person and I admire you.
Just remember to be kind to yourself. You're only human. Whatever you're feeling the panic, the crying, it's all ok. Even if your home is a mess just remember that you're only one person and you're dealing with a lot so don't sweat the small stuff it can be easily fixed. A messy house can be sparkling clean in an hour when you're determined. Your mental wellbeing is very important.

crazycatladyof6 · 15/01/2023 00:50

Sending love and strength x

BreakingPointAgain · 15/01/2023 16:08

MyCake · 13/01/2023 22:41

My BIL is a consultant in a different hospital (not a neurologist) and is going to ring up Monday morning. My GP has managed to confirm the blood tests were normal but they haven’t got all the scan results. At least the GP bothered to get in touch with him.

I am really low and panicky now. I keep crying (not in front of him) and it’s hard with work, dc, the house etc, especially as some nights I’m not sleeping well.

I would suggest getting a printout of test results, they maybe normal i.e. within range but may not be optimal.

endofagain · 18/01/2023 18:12

Could your BIL come and actually look at your DH? IME consultants all know each other and would always try to help a colleague's family. There are very few perks to working in the NHS, but that is one of them.
Does BIL have any thoughts as to what the problem might be?

Twinklenoseblows · 19/01/2023 13:39

How are you OP?

Katekeeprunning · 19/01/2023 16:48

How are things today @MyCake ?

Original poster
MyCake · 19/01/2023 17:53

Things are awful. We’ve chased up scan results 3 times and not heard back. His swollen lymph nodes are growing and multiplying. He is too nauseous to eat.

I am so scared and angry. I sometimes feel like he’s being left to die (he’s probably not but he looks so unwell it’s hard not to think it).

He won’t go to a and e as he honestly doesn’t have any faith in them.

OP posts:
Original poster
MyCake · 19/01/2023 17:55

Dh rang today and got the gp to chase too.
Bil ringing tomorrow too. Bil is too far away to visit.
My mil is deteriorating with terminal cancer and is 3 hours away. Poor dh is too unwell to travel.

OP posts:
endofthelinefinally · 19/01/2023 18:05

This is really awful. Is there any way you can get him to A&E, even if you take a blanket and pillow and he has to lie on the floor. I can't even believe that I am saying this, but this is the stage we are at.

Matchingcollarandcuffs · 19/01/2023 18:08

if you have a concern (ie worried he'd dehydrated/suffering due to being too nauseous to eat then you should talked him back.

Equally you could do another GP appt who could then refer to the MAU the hospital which is staffed by Medicine Drs who can call who can call on other specialities off needed.

The system is on its knees so if I were you and you have the means I'd be going private at this stage with whatever scan and blood results you have. Same as BIL too, a fresh pair of eyes can be helpful

heldinadream · 19/01/2023 18:11

God OP this is really heartbreaking.
I think I agree with the previous poster take him to a&e because this is an emergency and someone somewhere needs to shape up and give him some attention. It sounds like he should be admitted to hospital. I'm not a medic though.
I'm so sorry you're still going through this and not getting any proper help.

Coffeecreme · 19/01/2023 18:17

take care of yourself op
i agree with caling the GP and being firm about his lack of eating and drinking

Reigateforever · 19/01/2023 18:19

I would go to A&E and be prepared to stay for hours. Can you get someone to look after your DC?
Thinking of you.

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