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.

@BusterGroove thank you. It’s given me the right idea of what the correct email address will be! 💐

Well done OP you're doing amazingly in the circumstances. I really hope PALS will help move things along on your behalf 🙏
You are very justified in your concerns.

@Conkered I didn’t realise all my phone calls would be in vain. I feel so guilty as I wasted so much energy phoning.
I rang up angry once, I rang up crying twice and the other times tried to sound quite measured!
I have been keeping a detailed written record anyway as I am used to keeping records for work. I’m hoping the emails help a bit. Dh was so fit and strong a few months ago.

You mustn't feel guilty OP. You're doing everything you can and are right to think phonecalls should be sufficient. There was a time not too long ago when they would have been.

You can always give PALs a call as well tomorrow to follow up on your email. Keeping records is a really good idea, try to have them to hand when you make contact with PALS. (I know from bitter experience how the stress and tiredness can affect your memory at times like these, well that and menopause as well!).

I'm actually quite in awe of your strength and ability to keep working as you are, I'm not sure i would be able to. Wishing you every strength and good luck x

You have done nothing wrong, OP. You're amazing. I wish we could do a just giving for your family and you, but I guess that's not allowed on MN?

I'm sorry OP. The only other thing I can suggest is emailing the Chief Exec direct. Their email should be easy to find and whilst it shouldn't, emails direct always sets the hairs running and gets results quickly

@MyCake they're was a story I read recently of a patient being stuck in the Hell limbo between A+E and wears t and they'd give 3 days without being reviewed or given food and I think in the end they got things moving by tweeting the Chief Exec. If you can't find a phone number is worth a try.

I would ring the GP this morning, explain how much worse things have got and say something has to happen, whether admission or private referral. Enough is enough.

Best of luck to you, and be kind to yourself and take any support/counseling you may get visa work, this is easily enough to trigger PTSD it at least a deep trauma response

No, that's not allowed

@Ladybug14 that is such a kind thought but it’s not allowed on MN and also would definitely not be allowed/appropriate because of my job.

We have had a big cut in income since he has been unwell but we are not struggling with essentials like food or bills and I know my parents would help if necessary.
A family member has offered to pay for a private assessment and I’ve insisted my DH rings the Gp to get that referral this morning!!

dh is also worried that if it looks like we are complaining the that might affect his care. I would like to think this isn’t the case but I don’t know.

thats natural for him to feel that way.
and i think that stops more people from complaining.

I'll keep you all in my thoughts and prayers and send healing and angels. and flowers and cake 🥰 😍

@Matchingcollarandcuffs unfortunately ptsd is something I’ve been well acquainted with for many years and despite getting a lot better through treatment, when I was very unwell last year (physically unwell) it did trigger parts of that again, although not severely. I am very mindful of this and am talking to people, writing things down etc. I could go back to my previous psychologist if necessary and have emailed and spoken to him on the phone just to check in.
My mental health and resilience is generally very good, probably because I have had so much training and experience through work but also because of what I’ve been through myself. However, dh is my rock and this has really wobbled me.

I have a day off today - woo hoo - and am going out for a few hours by myself to do something relaxing and therapeutic.

I'm really please to hear that @MyCake you absolutely deserve that. I hope you find some restorative peace today, in whatever form that is.

Enjoy your day, good luck with getting a diagnosis.💐

going out for the day sounds a great plan

You're in our thoughts OP. Hope you can relax for a while

Don't know if anyone has suggested this but the Freedom to Speak up guardian is a big deal in most Trusts and might be worth a shot? And the principle is certainly not to exacerbate an already tricky situation, they will recognise that making things worse will not help anyone. Good luck, I really feel for you.

going to PALS will just put an alert on his file - it wont jeopardise anything

I don’t understand this. There is no planet on which a lymphoma diagnosis is not urgent. Trying to differentiate between lymphoma and sarcoidosis (which is what it sounds like they’re doing) is urgent because of the nature of the former. Even a sarcoidosis diagnosis itself is urgent if the patient is deteriorating rapidly as it can be fatal in around I think 5-10% of cases.

Perhaps the test results thus far are indicating sarcoidosis over lymphoma hence the lack of urgency and they haven’t communicated this with you yet. But even so - they may be assuming that sarcoidosis is chronic because they’re not aware he’s still deteriorating.

I understand your latest post that while he is clearly seriously ill you don’t feel it’s currently critical enough to take him back to A&E. That makes sense. It’s difficult to assess where he is simply from your words. But I would emphasise the validity of this option should he deteriorate further.

Your DH should not think that advocating for care will affect his treatment. Everyone knows the NHS is in a state and sometimes it’s just a case of repeatedly drawing attention to the seriousness of the problem to get it properly attended to.

I would ring the GP this morning, explain how much worse things have got and say something has to happen, whether admission or private referral. Enough is enough.

I agree. It’s very difficult to communicate with a hospital as a patient or lay person - the GP needs to get on the case.

Lots of excellent advice/suggestions on here about who to contact. Have you also considered contacting your MP? A friend of mine works for a local MP and is always liaising with NHS and social services on behalf of constituents. I guess it will depend on who you have and how accessible they are.

I would also agree that making a fuss/complaining will not jeopardise your dh's treatment. In my experience (admittedly from being in the nhs some time ago!), quite the opposite, as nhs managers do not like to have complaints and will often get involved to speed things up.

I do hope that your dh can get some answers and a treatment plan asap. It must be terrifying for you all.

dh spoke to the gp who acknowledged my email and said she was sorry we’d been left so long. They have no recent results from the hospital either. She has prescribed him an anti sickness medication, is contacting the hospital and seeing him in person early next week.