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’m so sorry OP. I can’t remember where you got to with the BIL and the offer for private treatment. The NHS seems to be completely failing you. You obviously need answers quicker than they are going to get these tests done. More waiting! Did they give you any timelines?

I'm really sorry to hear that @MyCake . Hopefully within this next round of tests will be the test that brings some helpful.answers. you must both be at your wits end.

@Delatron I don't think we can be sure it's the NHS failing mycake. Sometimes rare conditions just do involve a horribly long and twisty and distressing journey to diagnosis.

I have a rare condition that often presents false negatives on diagnostic tests and many people experience similar journeys, wherever they are in the world and whatever their healthcare system /access to private care. And there are some conditions that are only diagnosed by a process of eliminating other conditions through testing.

I’m so sorry OP, the gnawing anxiety of not knowing is the worst.

Sure @SweetSakura but the tests were put through as urgent mid December then they were pushed back to the New Year and here we are at the end of Jan. I wouldn’t be happy at all with that timeline and having to constantly chase up what are supposed to be very urgent tests.

Anyway, it was just huge sympathy for the OP and wondering if there was anything that could be done to get tests through quicker/more urgently.

I am heartbroken for you both. The waiting must be agony. I will pray for your family and that you have answers soon.

I’m totally gob smacked at this. Could they not see the deterioration in your husband?

I’m heartbroken for you both @MyCake

I just want to cuddle you OP, I'm so sorry. I feel really, really worried and scared for you and I don't even know you or live in your country. I wish there was something I can do. The only thing I can do is send good wishes to you with my mind and heart. :(

My thoughts are still very much with you both
The waiting for answers is torturous and I truly hope it won't be much longer
You have such strength and focus, even though your head is spinning you're keeping the show on the road for others. Look after yourself as much as you can

I’ve woken up so anxious I can’t breathe.
I’ve tools work that I am working from home most of today. Thursday and Friday are pretty busy but I’m off at the weekend and I’ve booked Monday off too as dh has to go for a LP and I think I need another day off to rest.

Haven't posted for a while as others have said better than I could anything I might've wanted to say, but I'm still here quietly virtually standing with you so to speak. Didn't know how many people would be around this time of morning but just posting to say that I hope the worst of the physical anxiety symptoms ease off for you soon as they're exhausting.

I'm so sorry you are STILL going through this agony. Sending love ❤️

We both spoke to the consultant on the phone separately. I asked hundreds more questions than dh! He gave lots of reasons why dh shouldn’t be admitted and when i
asked about whether private treatment would speed things up he said not at this stage and the PET scan would be very expensive. However he promised that when the date (allegedly urgent) comes through, if it’s not very soon he will speak to radiology himself to speed it up.

Bil is furious and says dh should be admitted but because dh has an appointment Monday there is no way he’ll agree to go to the hospital before then. Consultant says biopsy depends on what the registrar thinks after examining him Monday but the registrar has never even felt dh’s neck before! So Bil has written to the gp and dh is seeing her this morning. He has requested that she examines his neck and requests an urgent biopsy. The LP and PET scan are booked by hospital and also an ‘urgent’ haematology referral.

I was brutally honest with the consultant about my upset and frustration with the waiting and he has promised he’ll accelerate everything. He said he is very concerned and I believe him (he was obviously very concerned in December) but for whatever reason there has been 3 weeks between the last scans and yesterdays conversations.

Bil’s letter highlights his concerns about dh’s treatment, especially the delays, so hopefully gp will act.

His most recent scans didn’t show anything significant. He still thinks sarcoidosis but also actively ruling out/searching for lymphoma.

DH’s trust of the system and reluctance to go to a and e is driving me, Bil and Sil mad but he’s so unwell that I’m not going to press the issue and just be thankful that he’s agreed to take Bil’s letter to gp which also explains dh’s worry about bothering the doctors, hence he has intervened. Bil is a consultant haematologist but the other side of the country.

Brilliant to hear BIL has written in support. I hope the GP appointment this morning offers either interim reassurance (or a fast track to admission).

I'm glad you're taking a day here and there to rest. I really hope you're not feeling bad about that, it's entirely understandable and the right thing to do.

Thank goodness for your BIL too, I hope his letter has the desired effect with the GP today.

Everything crossed again today for his appt x

Oh how frustrating and worrying for you all. You just need some answers and some urgency!
I'm glad your BIL is doing as much as he can.

How frustrating for you. I think your DH's reluctance hasn't helped things (not having a go at all and know you've said this yourself), but I think others may have gone to A&E long before now, and refused to leave.

I hope you can go to gp with dh this morning. Take care of yourself, maybe the gp can give you something to help keep your strength up as well.

This is just soul destroying for you, I’m so sorry. Complex differential diagnoses can take a frustrating amount of time, but even so you first posted on 13 December and 6 weeks later still no biopsy has been done! Biopsies themselves can take a while for the results.

I think if he’s booked in for a PET scan there’s no point paying for one unless you have up to £4000 to spare. However it might be worth seeing a sarcoidosis specialist privately asap? (Without a PET scan and biopsy they can’t 100% rule out lymphoma but at least you’d be doing something).

If you can go with him to his appointment on Monday I think you should and insist the registrar looks at the extent of the swollen glands and highlight the deterioration.

Thinking of you op. It sounds an absolute nightmare.

Neck biopsies are my job. Where are you?

@Themermaidspool dh took a detailed letter to gp from consultant haematologist Bil about a possible biopsy and she did nothing except examine his neck, confirm the enlarged nodes and send him for more blood tests. She suggested he takes the letter to the registrar appointment on Monday when he has the LP.
We are in SE

Well at least he has more blood tests, can he get them done tomorrow for prepared results to show on Monday?

Does your GP think it's sarcoidosis? I had the acute version ten years ago, diagnosed with a chest X-ray and an ACE blood test

I'm sorry your DH is so unwell but I would just like to add that I spent 5 weeks in hospital earlier this year and the wait as an inpatient for X-rays and scans is still very frustrating, everything is so under pressure, I waited days and days for things to be done, no decisions over weekends and felt very isolated away from my family.

@MissSmiley I think you make a really good point here. And also, hospital isn’t always the best place for someone who feels rotten-the constant checking of blood pressure, cleaners coming early, other patients making noise etc. The op’s DH is probably better in his own home getting rest and surrounded by loved ones until told otherwise.