To be scared to death that my OH is seriously ill?

[maz2003]

My OH developed what looked like an eye infection the week before our twins birthday in March. He refused to do anything about it that week but halfway through their party decided to seek advice from the pharmacy (leaving me to deal with the party.)
That was 22 weeks ago.
His whole right face is swollen as is his nose. The swollen area is very red sometimes verging in purple. He has seen his GP ( not the same surgery as me) and she has been consistently hopeless. He has had no blood or labs done. He is a smoker ( smoked 30 a day for 45 years... he is 58). He told her he quit 6 years ago but he didn't.
He has been seen by ophthalmology who say it's not an eye issue. They refused to say what they thought it was. They suggested dermatology. It's taken 8 weeks to get a dermatology appointment.
I am very concerned that this is very serious, however he is old school and thinks the GP always knows best.
I recently betrayed his trust by showing pics of his symptoms to a friend's husband who is a well regarded ENT specialist and he tried to help by suggesting how he could be seen at ENT quickly but my oh is insisting the GP knows best.
AIBU to try and speak to his GP? Is this just unethical. We have 3 young kids and he is a stay at home dad (retired). The children wouldn't do well without him.
I am very scared.

@lemonyellowtangerine - I do think the PM might be a good idea. He is supposed to be seeing the GP this week, although is yet to make an appointment.
I asked two days in a row if he had booked an appointment and he flew off the handle saying I didn't need to ask him every day, so I will not be asking again.
It's quite hurtful that concern is met with such aggression.
He also saw his ex wife for the first time in 4 months and apparently she told him how bad his face/eye looked and asked why wasn't he getting help or the right help.That seemed to strike a chord and was at pains to say how concerned she was. It's good he is hearing it from other people as he clearly gives no weight to my opinion.

As a precaution, please make sure that he has life insurance and that you and/or the dcs are beneficiaries.

If I were you, I'd be terribly hurt he would listen to his ex-wife and not me. It sounds like he would rather die than listen to you or the dcs.

Could it be that if he were diagnosed with a major condition, he would be dependent on your care which he subconsciously does not want. That is why he is putting it off.

I would despise the bones of him if that were the case.

I don’t know if a marriage can survive a scenario in which you can’t be honest with your partner that you’ve done something for their well-being. Nor the level of fear an intimidation you have. I don’t think it will survive his whole approach to his health.

Hell, worst case scenario he may not survive himself.

So, what have you really got to lose.

yes it would be infinitely worse.

Why is that OP? Is he likely to be violent? Are you frightened of him? What will he do if he finds out that you’ve contacted his GP?

Good luck, it sounds like you're doing all the right things. Just tell him you have contacted the gp, potentially is life is at risk so what have you got to lose?

@blueshoes not sure exactly what his fear is, probably of dying and leaving 5 children ( 3 with me, 2 with ex wife), I suspect he doesn't want to be dependent.
I also imagine he is hoping everything resolves itself.
I understand that on one level... on another level I don't.

@AlexaAmbidextra we would probably stop talking. It would be awkward and there would be an atmosphere for the kids. If I thought he would change his behaviour I would but I have outlined my fears and he has done nothing.
On balance I want peace for my children.

What a horrible situation to be in OP. I understand you want peace for your children but your DH sounds an incredibly difficult man. Sadly, your children may well end up without a father altogether if he continues to stick his head in the sand. 😢

@AlexaAmbidextra this is the sad reality that I have been facing for a while.

i think it is natural he would listen to his ex in a way, your relationship is too close.
can you go to the GP appointment with him?

Drive him to a and E but say you are going somewhere else... Once you are there he will probably just try an be seen surely... If it's an emergency they can direct him in the right direction

And go in with him. Don't wait for him outside. Go in the room with him

I assume you are worried about dermomyositis with lung cancer? Has he got any other symptoms associated with dermomyositis like Gottrons papules or muscle weakness etc?

You can get dermomyositis without it being from a malignant source. Also rosacea and dermomyositis rashes can look very similar to the naked eye and needs dermatoscopy to differentiate so given he has seen 2 specialists, one of which is a specialist dermatologist (and he has no other symptoms presumably?) could it maybe be simply rosacea and nothing more serious given he has no other symptoms and it’s been going on for a while?

Blood tests are not usually offered with rashes straight away in GP and the more unusual bloods requested for dermomyositis are not usually done in GP anyway. If the dermatologist suspected this a skin biopsy would have been arranged.

With respect to your ENT friend given he has only gone off pictures and your description it’s quite unprofessional of him to cast aspersions on the management of other doctors.

As far as the letter writing and referral thing. Doctors are not allowed to breach confidentiality and cannot refer on third party discussions usually even if that third party is a close relative if the patient themselves had capacity. If you have not been to the GP appointments with him then you have no idea what has been discussed between them as the communication between you and your DH sounds limited so I expect he hasn’t told you much detail so the ethics and suggestion by GMC referrals etc is irrelevant.

I do genuinely feel for you, your anxiety is almost palpable in your posts . You need to sit your husband down and be honest with how it is affecting you, you will end up making yourself unwell with the stress if there is no resolution.

(And to the poster who said GPs are there to provide a Primary Care Triage Service, no we are bloody well not. We are specialists in general practice. IMO we should be called Consultants in Primary Care. We have to know a lot about everything, we are not just a referral service).

No doubt I will get pilloried for what I have said but TL;DR be honest with your husband OP, for your own sanity

With respect to your ENT friend given he has only gone off pictures and your description it’s quite unprofessional of him to cast aspersions on the management of other doctors.

I’m sure you’re aware, as a GP, that consultants can be highly critical of GPs.

@TatianaLarina yes I’m very aware of that. Sometimes it is justified but many times it is not and it’s very unprofessional. Just as I could not do their job, I very much doubt a hospital consultant could cope with my job.

@EleanorReally - I agree. He had a fairly good relationship with her. So long as his listens, I don't care who it is to.

@Needtoworkhelp - I can't drive a grown man somewhere and force him to go.

@Lostmychristmasspirit - to be fair I am sick of the mud slinging between primary and secondary care.
The ENT was only trying to be helpful and we trying to find ways for him to be seen.
The GP acted like she was going to bring him back in and then went on holiday and did nothing.
He had a shadow in his lung last autumn and nothing was done about it in either primary or secondary care.
I am ill with this. My OH knows that. It's been the death of what was left of the relationship.

@Lostmychristmasspirit I should have said he was coughing up blood and had melena for a period in July. He claims it's all ok now. I am not convinced certainly with the bowel aspect, however I don't feel like I have the right to interrogate.
I think I said earlier in the thread ( but I am loosing track) that his GP thinks he quit smoking 5/6 years ago when he has been smoking 30x day for the last 45 years. He started vaping in January.
For me, what looks like a textbook heliotrope rash and periorbital edema is the most alarming aspect, along with exhaustion.

Sometimes it is justified but many times it is not and it’s very unprofessional.

If it’s justified then it’s not unprofessional it’s just factual. My father’s cardiologist was very critical of his GP for diagnosing a chest infection when he actually had acute heart disease needing immediate surgery.

This ENT guy is a friend of the OP and giving advice off the record - in which case he’s entitled to say what he likes.

For what it's worth for anyone considering any type of third party consultation/communication with a GP I would strongly advise against it.
Given that nothing can actually be done of any value it's a complete pig in poke.
I am glad I now know this, as I have responsibility for my elderly aunt with a plethora of health problems including a recent brain haemorrhage. I was, up until recently, happy to liaise with her GP however not any more. I am glad I can see the absolute waste of everyone's time, including the GP, that such appointments are.

So haemoptysis and melaena as well? It gets worse each time you post OP. I don’t know how you stand him quite frankly. Not surprised you are ill yourself but I can’t help thinking you’d be better off without him. Your children too would be better with you as a well single parent imo. You say yourself your relationship is dead. Don’t sacrifice yourself for this selfish, stubborn man.

Actually, I have found, when it comes to old people, GPs are happier to liaise with family. Particularly if there’s any kind of illness that affects the brain.

I have an elderly aunt with dementia and other health issues and the GP tends to get the story from me as well as her as she is much less able to account for herself. It’s a bit like dealing with a child.

I'd make it clear how selfish he's being, and if he loves you he'd listen to your concerns.