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.

He’s found another lump which means he has lumps in his lymph nodes in 3 areas of his body.
The consultant says this is a sign of sarcoidosis which is what he thinks it might well be. But obviously we are worrying about cancer too. The weight loss makes him look so unwell.

Do you think he should ring the hospital and tell them? It’s a fairly big lump and the biggest one so far. He is already on a 2 week urgent list for a ct scan and not sure whether calling the hospital would make a difference.

I would let the hospital know in the morning.

Yes I would say to ring. My heart goes out to you both 💞

The lumps would be in keeping with sarcoidosis so I don’t know if the hospital would do anything differently once you let them know.

Do you have any savings? If so you could pay to have an MRI scan done privately and you may be able to get it done before Christmas.

If it is sarcoidosis, that can completely go away for a lot of people. Praying it's either something else or that's what happens soon for your hubby. x

Yes definitely tomorrow. I hope you manage to get some sleep tonight x

*definitely phone tomorrow

I have sent you a pm OP.

Thinking of you and hugs.

@endofthelinefinally thank you. I am
exhausted now but will reply tomorrow x

Hugs OP... x

It's another virtual hug from me x

Thinking of you. Please reach out to people in real life, ask for as much help as you can. Your DH sounds lovely (good news about the sick pay) and you sound lovely too. People will want to help.

Sending you a hug love and strength.
I'd let the hospital know, purely for your peace of mind as DH's 2WW will soon come( even though I know it doesn't feel soon)
Seek help, comfort and a listening ear wherever they are
You're in such a tough situation, and with other pressures too
People will want to help, so don't struggle alone
Your DH's work have been great about the sick pay and others will be too
If it is Sarcoidosis, it is usually treated with steroids( DS friend has it) so is manageable.

Thinking of you, OP.

I remember reading reports of sarcoidal immune reactions following the Covid vaccination. Could this be related??

@MyCake not sure if you saw this, but worth being tested for if not already done. It's easily treatable, but can be fatal without treatment.

@Nchangeagain I am pretty sure he’s been tested for this but when we go back to see the consultant I’ll add it to my list of questions. He was found to be low in folic acid a year ago but he’s been on very strong supplements and his levels are normal now. He was also low in something else (I’ve forgotten what) but again that is normal.
The bloods show high inflammation markers but everything else looks normal which so frustrating as something is obviously very wrong.
The consultant was very patient and helpful with my questions last time and I’m making a list for next time.

I am particularly sad this evening as he tripped over earlier and has cried a few times because he feels so fed up. He hardly ever cries. I am petrified watching this rapid decline. I don’t know whether to cause up the scans early next week and I don’t know when, if at all, we need to tell them he’s got worse again.

We'll keep praying for you. You are stronger than you think you are. I like how you enjoy the small positive things like your children's concert. Hold on to those moments. Sometimes in life it feels like your world has ended but things do get better. There will be light at the end of the tunnel. Enjoy your Christmas holidays.

@MyCake Get them to check available levels of B12, as some can be inactive so although levels look OK, your body can't utilise it.

Thinking of you @MyCake and I would say do keep doctors updated of changes ,or ask them for things to look for that mean should go back in .

And I want to give you a glimmer of hope that it is possible to be in a really bad way with an autoimmune and things turn around dramatically once the right treatment starts. I couldn't hold my head up or swallow this summer. Now I can ice skate and talk for hours. I really hope you get the same positive improvement for your DH

Sounds like you need another big hug x

Here’s a hug top-up for you, @MyCake . It’s really warm and safe this hug. And to make you feel stronger and looked-after for a little while. X

I haven't commented before OP, but be aware that there are many Mumsnetters out here thinking of you and your family and praying for the best for you x