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.

I have only just seen this thread Op but couldn’t read and run- I’m so sorry for all you’re going through.

@MyCake i hope you got a good night sleep, and have a better day today

Today is another fairly busy afternoon with work related stuff but then I’m able to relax until Christmas Eve.
dh is very dizzy today and struggling to walk. The dizziness has consistently been the worst symptom over the past 5-6 weeks.

Glad you've got some time to relax. Good luck getting through to the hospital today. Don't feel it's stalking, I'd think important to relay any changes x

I hope you get through today and they rush him through x

Scan and test dates are now in the new year despite being put through as urgent. I feel like I’ve failed him by not insisting he got a private consultant weeks ago.

I am numb now and haven’t cried in days. I’m drinking wine every evening just to relax which is unlike me. I’m busy with dc and church stuff over Christmas but I don’t feel any joy. I’m trying to be jolly and I’ve made a big effort with the presents and decorations but I feel as though I’m looking at it all from behind a pane of glass 😞

You haven't failed him. If it helps I did go privately to get my myasthenia diagnosed and was classed as urgent and the private appointments still took several weeks due to the COVID backlog issues. And that was with them slotting me in to cancellations.

You may find (let's hope) he gets offered a cancellation sooner - this happened to me after moving to NHS since diagnosis, they must have a list of people they go to first when they get a cancellation.

How's he holding up?

Sending best wishes OP. You’re doing all you can for your DH. I hope he gets his appointments sooner.

I'm so sorry. This is a nightmare for you all. You're doing a great job though so please go easy on yourself.
I'm sorry if I've missed this comment but would it not all move a bit quicker if he just went to A&E? They'd see how poorly he is and just get the ball rolling re scans as he'd be in the system then. Being an outpatient makes everything so much slower. X
Sending love and thinking of you all x

Phone the consultant and leave a message with the secretary saying about the new lump and that he has declined since they last saw him. Also ask about cancellation slots for the scans.

You are in such a difficult situation, I'm sure you are all very frightened and worried even if you aren't voicing it to each other.

you’ve mentioned private health insurance, I’d that still an option? If so why not try it in tandem and see which scans etc happen first? No harm in trying and likely see the same consultant. What would it need, a referral from Gp?

My insurance also offers private video GP appointments who can refer, does yours? (I’m with AXA). I can’t get my head around how terrifying this must be

Have been thinking about you all over Christmas OP and hope you managed to get some rest and have some peaceful family time. X

I have been thinking of you too @MyCake .

Thinking of you both today. Hoping and praying for better news to ease your troubled heart and mind. I understand the anguish of being so worried and frightened but trying to be brave at the same time

My husband had/has all this except the weight loss and night sweats. I was also worried about MS. It's degenerative disc damage in his neck.

Have also been thinking of you and your DH. I hope he was well enough to enjoy Christmas

Best wishes OP xx

OP, hope you are all OK and thinking of you. 🌻

Sorry I’ve not updated. I have been feeling quite numb and found the thread too upsetting to read as I haven’t really been connecting with my feelings.
He has got worse but the rate of decline thankfully has slowed down because I honestly thought he was dying a couple of weeks ago.
He has the scans this week and hopefully they will show something conclusive.
Money is going to be a struggle this month but it’s me that deals with all the finances usually so the whole burden has fallen on me.
Cancelling our holiday and telling the dc we can’t do things is making me feel like shit.
I love dh so much and feel so bad for him but I don’t think he sees or appreciates how much I’m doing to keep things going. That said, I can’t really be cross with him when he looks so thin and sad!
I am back at work this week and I feel like I’m going to burn out but I feel I can’t slow down or show any weakness as my income and job stability is so vital at the moment.

I am seriously not a hugger but I’d gladly take all the virtual hugs at the moment.
I have been cuddling my pets a lot but even feel guilty holding them in case I can’t afford to keep them if dh can’t work. My heart feels like it’s breaking in so many ways and I’m catastrophizing a lot.

Christmas was quiet but lovely. Everyone visited us for a change (not all at once) so we didn’t have to travel the country like usual!!

Hi OP I'm sorry if this has been mentioned before but has a severe b12 deficiency definitely been ruled out? I know of a doctor in the USA who ended up in a wheelchair, in nappies, due to an undiagnosed deficiency. He learned to walk again but not fully, the deficiency damages nerves that wont always repair. I can't find the article right now but this lady's story is not too far off what I mean. Sometimes, often times, doctors will only test a serum b12 which is often not enough if there is a methylation problem.

I am definitely going to mention B12 if nothing shows up on the scans. I know it didn’t show as a problem on his last blood tests. His folic acid was low a year ago but it’s normal now after taking supplements.

I am not sure that would explain the enlarged lymph nodes (which are getting bigger) and some unusual granulomas that they found.

I am so sorry you and your husband are going through this nightmare. Wishing for a speedy resolution and the start of treatment that will restore health and peace.

Sending big strong, patting and swaying hugs to you. OP. This all sounds unbearable. I am sorry. 💐