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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:
momtoboys · 26/01/2023 14:25

Thinking about you, Cake.

Princesspollyyy · 27/01/2023 17:47

How are things @MyCake thinking of you x

Original poster
MyCake · 27/01/2023 20:26

@Themermaidspool can you get biopsies done privately? Do you need a referral from a hospital or can you get one from the gp?
I am very doubtful that the registrar will request biopsies as all he has done since November is minimise poor dh’s symptoms and drag this on for unnecessary extra weeks

OP posts:
SweetSakura · 27/01/2023 20:38

@MyCake I am so sorry this is still ongoing. I think every time the thread is quiet and I hope it's because you are finally getting progress!

LovedFedAndNoonesDead · 27/01/2023 20:49

MyCake · 27/01/2023 20:26

@Themermaidspool can you get biopsies done privately? Do you need a referral from a hospital or can you get one from the gp?
I am very doubtful that the registrar will request biopsies as all he has done since November is minimise poor dh’s symptoms and drag this on for unnecessary extra weeks

Have been following your thread for a little while and feel desperately for the situation you find yourselves in and can’t believe it’s been allowed to carry on for so long without someone (any of the many Drs who have had the opportunity) taking ownership and getting DH in and doing all the required tests.

Regarding private biopsies, you’d need a Dr to sign off on the request forms in the same way you’d need blood forms before having the blood taken. Does the consultant you have seen do any private work? If he does, possibly the quickest way to get the biopsies organised privately is to contact his private secretary and ask her to ask him if he will arrange the tests privately as you doubt they will be forthcoming on the NHS.

BunchHarman · 27/01/2023 20:55

It is truly astonishing how inactive and dithery the medics are being. I would be collapsing under stress from the lack of urgency and the lack of action. You’re not. You’re a machine, OP.

bloodywhitecat · 27/01/2023 21:08

Have you spoken with PALS? They helped us when DH was experiencing similar with getting a diagnosis, it was their involvement that meant DH was referred to a much bigger hospital who were able to get the biopsies that our local hospital kept messing up.

Mirabai · 27/01/2023 21:40

MyCake · 27/01/2023 20:26

@Themermaidspool can you get biopsies done privately? Do you need a referral from a hospital or can you get one from the gp?
I am very doubtful that the registrar will request biopsies as all he has done since November is minimise poor dh’s symptoms and drag this on for unnecessary extra weeks

Yes you can. You don’t need a referral you simply make a self pay appointment (assuming you don’t have health insurance) with the appropriate consultant - sarcoidosis or lymphoma in this case - and they will organise a biopsy for you (if they think it’s clinically appropriate but unlikely not to be).

If you’re in London/SE Nuffield Health have cancer centres - there’s a couple in London, one in Guildford etc.

However, a cancer specialist will also want to do their own scans and that’s where it gets very expensive - unless you can find a consultant who does NHS work in the same borough in which case they should have access to the NHS scans. (They still may want to do their own though).

BigGreen · 28/01/2023 08:32

Would it be possible to change to BIL's hospital by any chance? I realise it's very far away, but at least BIL might have a bit more influence?

Reigateforever · 29/01/2023 22:03

Thinking of you both and hoping you are going to get answers at tomorrow’s appointment with the register. Hugs.

Original poster
MyCake · 29/01/2023 22:35

Thank you for remembering @Reigateforever
His stepmum came over today and told me she was shocked at how much more weight he has lost in the 3 weeks since she last saw him.
Sometimes I think it can’t be that bad as the ‘full’ body ct (which didn’t include his neck!) was clear but other days I think he looks so frail like he’s dying.

I look like I am coping but I am binge eating until I feel sick every evening and I have spent the weekend obsessively clearing out cupboards and drawers.

OP posts:
StartupRepair · 29/01/2023 22:37

You are amazing @MyCake . Don't be hard on yourself for whatever you need to do to get through.

Original poster
MyCake · 29/01/2023 22:39

I have changed my username to MyCake because that is what he has called me for the last 25 years. We’ve been together since sixth form 🥰
We had some ups and downs in our late twenties and early thirties when the dc were young, but for the last 6 or 7 years have been the best ever. I’d be utterly lost without him.

OP posts:
Original poster
MyCake · 29/01/2023 22:41

Thank you @StartupRepair
I am quite pleased with myself that I haven’t fallen into my self destructive ptsd coping strategies that I had years ago. I do worry this will retraumatise me but I am about as resilient as you can get and I am trying so hard to stay positive.

OP posts:
Original poster
MyCake · 29/01/2023 22:42

My biggest issue is that I have absolutely no faith in the doctor we are seeing tomorrow. I am preparing myself for disappointment and frustration.
He has seen the letter I write detailing all of the things he missed or dismissed last time so I hope he will be more proactive this time.

OP posts:
WombatStewForTea · 29/01/2023 22:56

I hope you get some answers tomorrow. I think it I were you I'd be at the point of (politely) kicking up a fuss if you don't feel this doctor is taking you seriously tomorrow.

RandomMess · 29/01/2023 23:04
Flowers
OldFan · 29/01/2023 23:25

Praying for you all @MyCake . If this doctor is crap tomorrow, it might be worth asking the department to let you change and see someone else.

But if they're not that worried, God willing that's a good sign.

DutifulDaughterWifeMother · 29/01/2023 23:48

Hey OP, I have been reading your updates and you honestly are a complete badass! You are holding everything and everyone together through what is the most difficult time. I am in complete awe of your resilience. Just try and take a few minutes at the end of the day and catch your breath if only to just stop for you. When you go see that doctor tmorrow absolutely rip him a new one at his incompetence and make it clear you have documented every time you have seen him and his inaction. Tell him you will be submitting an official complaint to his employer and GMC. Let’s see if that doesn’t kick his arse into action…….🤞🏼I shall be thinking of you & manifesting that someone takes your DH’s deterioration seriously. You’ve got this OP & I don’t know where you are but if you are anywhere near Warwickshire I would love to help you in any which way I can. You lady are amazing 😘

DutifulDaughterWifeMother · 29/01/2023 23:49

OP, ask for a second opinion when u see him if he just dismisses you

Ladybug14 · 30/01/2023 06:21

@MyCake I know this probably isn't your style but I wouldn't leave the GP surgery today until I had some answers or a biopsy/scan organised xxx Thinking of you Flowers

SaintJac · 30/01/2023 07:22

@MyCake ive been thinking of you and I’ll be sending you my best wishes this morning for the registrar appt. Your BIL will prob have briefed you on this but the registrar should have a responsible consultant on site during clinic today. Can you ask to get their input? Or maybe this is just how the big London teaching hospitals run. At any rate could you ask to go point by point through your letter? And with permission record the consult?

BTMadmummy · 30/01/2023 07:45

@MyCake hood luck at GP’s today x

picklemewalnuts · 30/01/2023 09:34

Yes, good luck MyCake and Mr MyCake!

HazelBite · 30/01/2023 09:55

Hope you get some answers today x

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