Life changed overnight - liver disease, cancer fears, SEND chaos and I’ve run out of spoons

[NappingThroughTheChaos]

Hi everyone,

Bit of a rough one. We had some not-so-great news recently – my other half went in for an ultrasound (for unrelated stomach nonsense), and we got that kind of call from the doctors. You know the ones that come late at night and make your stomach drop.

Turns out he has liver disease – not alcohol-related – and it’s already progressed to cirrhosis. As a bonus, they also found a mass on his liver that they’re concerned might be cancerous.

He’s now waiting on a liver biopsy and still needs the endoscopy for the original mystery stomach saga. Meanwhile, I’m stuck in that weird limbo between “must stay calm” and “would it be inappropriate to scream into a tea towel?”

To say I’m reeling is an understatement. We’ve got two children with SEND, both struggling massively with their mental health. Life was already intense, and this has just added another level of uncertainty and fear.

I’m trying to hold it together for everyone, but I’m exhausted. I swing between numbness, anxiety, and sheer panic about what comes next – for him, for the kids, for all of us.

If anyone’s been through something similar – with liver stuff, the NHS journey from here, juggling kids and serious illness, or just general “how not to collapse in a heap” advice – I’d be hugely grateful.

Also open to dark humour, practical tips, or instructions for building a small fort under the stairs.

Thanks for reading

Bless you, what a bolt from the blue. I would advise you to write things down, worries, lists, it might help slow your panicked brain down a little. Do you have time to go for a short walk in nature each day? (Btw you sound great, laughter IS the best medicine)

I had a similar rock bottom moment about ten years ago, my son was diagnosed with autism, my mum had terminal cancer, my dad died and I got sacked from my very stressful job because I couldn’t hold it all together. It was tough and I ended up with severe anxiety trying to cope. I got counselling and did a mindfulness course through nhs and I started meditating. I had some hypnotherapy to help me relax which really helped. I also took up yoga and tried to eat better and started walking. I basically tried to get myself feeling better so I could help everyone else.

So sorry you and your family are going through this

Thank you – honestly, that means a lot. It has been a total bolt from the blue and I’m still trying to catch my breath.

I love a list – the more over-the-top and colour-coded, the better. Writing things down definitely helps bring some order to the chaos (or at least makes me feel like I’m doing something).

I try to get out with our dog whenever I can – he’s the one creature in the house who never talks back and always thinks I’m doing a great job! Walks are a lifeline when youngest can manage me leaving the house.

Luckily, we also have a brilliant dog walker who takes him on group walks regularly – such a relief to know he’s getting exercise and stimulation even on the days when I’m stuck indoors. Total game-changer.

He really is an emotional support for the whole family – always seems to know when someone needs a quiet cuddle or a goofy distraction. I honestly don’t know how we’d be managing without him.

Thank you again – I’m clinging to laughter wherever I can find it. It really is the best medicine (well… that and the rare, glorious miracle of a nap).

Thank you so much – what a lot you went through. I’m so sorry you had to face all of that at once. It really helps hearing from someone who’s been in the thick of it and found a way through.

I’m definitely in that “holding it together with string and sarcasm” phase right now. The idea of calming my brain enough to meditate feels like a stretch, but I’m open to anything that might stop the internal doom-scroll!

Really appreciate you taking the time to share – it means a lot.

I wish I could come up with something witty to say to cheer you up but having had a “major event” like this myself, I know that you need to take good care of yourself. Give yourself some respite whenever you can - hopefully you have good friends and family to support you. I send you my utmost sympathy. 💐

Do you have anymore details on his liver disease? Is it fatty liver?

Sorry to hear about your partner, it sounds like a really difficult situation. Do you have a garden? On days where your youngest is struggling are you (and them?) able to potter in the garden gently to get some fresh air? In times of turbulence I find it helpful to have a little (low stakes, no pressure) project, busy hands calm mind sort of thing. Maybe planting tomatoes or similar?

Thanks so much for your kind words and wishes Merrymelody - really appreciated.

Not yet – we’re still waiting on a call from the doctor (hopefully today) to confirm when the extra tests and the biopsy will be booked.

It’s definitely not alcohol-related – he hardly drinks – and he’s not overweight either. That said, his diet could definitely be better… let’s just say there’s a worrying level of affection for Rustlers burgers when I haven’t cooked!

He does have private healthcare too, so we’re exploring that route to see if we can speed things up a bit and get some clearer answers.

Thank you – it really is a tough time, and I really appreciate you taking the time to reply.

We do have a garden, and we’re actually hoping to have some raised beds put in next week (if we can stretch the budget). The idea is to make the space a bit more usable and accessible, especially for my youngest.

They don’t attend school, and we’ve just secured an EOTAS package with a personal budget, which means we can use a little of that towards some gentle gardening sessions. It’s early days, but it feels like a really positive step and something that could bring a bit of calm and focus.

We’ve also just been offered an allotment – which is amazing timing or terrible timing, depending on how you look at it! Part of me thinks it could be a lovely escape, the other part is wondering if I’m taking on too much.

Low-pressure projects and “busy hands, calm mind” is exactly the kind of energy we need right now – so thank you for the reminder. Tomatoes might just be our first little adventure!

Screaming into a pillow is better sound suppression so you can go big

never been in your situation so can’t think of anything helpful

If you've not used it before private health care can feel very tricky to navigate and frustrating (like they make you feel you should know what to do when, but how would you!).

There will likely be a benefit to using it at some point but if on a fast pathway it may not be now.

Others may have better advice but mine would be to call the health care helpline and ask them to talk you through step by step what their processes are and what you need to do to access the care (normal first step is a referral letter from your gp but might be different here). Don't let them make you feel confused, but if you do be reassured that it isn't you!

That really made me laugh – excellent point re: pillow vs tea towel. I’ll upgrade my scream strategy accordingly!

Honestly, just you taking the time to reply is helpful. Sometimes just knowing someone’s out there, reading and rooting for you, makes a difference. So thank you – genuinely.

Thank you – that’s honestly so reassuring to hear. We’ve not used the private healthcare before, and I was already getting that “you should just know” vibe, which is a bit much when you’re already overwhelmed.

I need to get my husband to actually share the policy details with me so I can go through it with a fine-tooth comb – and then gently nudge (read: lovingly hassle) him to make the necessary phone calls. He’s not great with that kind of admin, and I can’t call the helpline myself as they likely won’t speak to me without all the consent paperwork in place.

Your advice has really helped though – it’s made the process feel a little less mysterious, which is half the battle right now. Thank you again for taking the time.

That all sounds very upsetting OP. I have been in a situation not unlike this. The best advice I can give is to try and keep as calm as possible, until you have a diagnosis for your DH, all the information, and there's a plan for the medical stuff. Once there is a plan - even when the news is bad and it may not be - you are in the system and there is more certainty. This bit at the beginning is awful, but you may need all your resources later on and as they say... you need to put your own life jacket on first, or you won't be able to help anyone.

I'm sorry you're going through this. Doesn't it always seem to happen at once? But you're in good company!

My dad has terminal cancer. My family live a distance away and I only see them once or twice a year so my fabulous friends are my family too. Six of them have got cancer right now, one has to have a thyroid removed, one her spleen, another a double mastectomy. Strangely enough, they're all going in on Thursday. Another friend's grandson has leukaemia. I also have my own health issues as I'm disabled.

But, as you say, dogs are the best! Mine gets me up in the morning and out of the door. I never take my phone on walks and the 'being uncontactable' for a while is bliss.

Make sure you take great care of yourself. Drink plenty, eat regularly and sleep well. You're going to have to be at the top of your game for a while.

Last year I had an ultrasound on my liver due to elevated blood results.
The call from my GP came 2 hours after leaving the hospital.
The interpretation of the ultrasound was that I had extensive cirrhosis and I was referred urgently to a liver specialist.
When i had the biopsy which I was told is the only definitive proof of liver health, it came back that I had some fibrosis but no cirrhosis at all. The consultant said the GP was working off of information available to them and wouldn't know that an ultrasound is not a good diagnostic tool for the liver.
I have managed to reverse the fibrosis.

Thank you – that really resonates. You’re absolutely right, this early bit with all the unknowns is the hardest – the limbo, the waiting, the fear without any kind of plan to anchor to.

I keep telling myself that once we have a proper diagnosis and some direction, even if it’s difficult news, I’ll at least know what we’re dealing with. It’s the shapelessness of it all that’s exhausting.

And yes to the life jacket analogy – such an important reminder. I’m not great at prioritising myself, but I’m trying to be more conscious of not burning out before we even know what’s coming.

Really appreciate you sharing your experience – it means a lot.

Thank you – and I’m so sorry you’re dealing with so much too. You’re right, it really does seem to come in waves sometimes, doesn’t it? Like the universe throws the kitchen sink, then follows up with the whole bathroom.

Your friends sound incredibly strong – and so do you. That’s such a lot to carry within one circle. I hope you’re all managing to find little pockets of peace and support where you can.

And yes – dogs really are the unsung heroes. Ours is blissfully unaware of all the chaos, but his loyalty and insistence on routine are keeping us tethered to something normal.

I love the idea of switching off on walks, though I don’t think I could go fully phone-free – youngest is so poorly, I’d be too anxious being completely out of contact. That said, I could definitely do with muting a few notifications and reclaiming a bit of headspace.

Thanks again for your kindness – and the reminder to look after myself. I’m not brilliant at it, but I’m trying. Sending lots of strength your way too.

Thank you so much for sharing that – what a rollercoaster you must have been on. It really helps to hear that the ultrasound wasn’t the final word for you, and that things looked much more positive after the biopsy. That gives me a bit of hope while we’re stuck in the unknown phase.

It’s such a strange position to be in – knowing something’s wrong but not having the full picture yet. We’ve been told a biopsy is on the cards too, and I’m clinging to the idea that it might give us more clarity (and ideally, something less bleak than what’s been suggested so far).

Amazing to hear you were able to reverse the fibrosis – that’s seriously encouraging. Thank you again for taking the time to post. It really means a lot.

One suggestion that might not be very helpful but might make you feel better.

By all means do lists, lists are great, but what helps is if you add a couple of tasks you’ve already done so you can tick them off and feel accomplished.

It’s still shit though, sadly!

Good luck.

You are in that limbo stage of not knowing which is awful.
I hope your husband has his biopsy as soon as possible so you know what you are dealing with.

No wonder you're struggling. That's an awful lot to deal with.

I'd definitely take the allotment if you think your children would be happy to get involved. It's a wonderfully calming thing to do and being physically tired from being outdoors does wonders for mood and self regulation in my experience. My child suffers with extreme anxiety and it made such a difference for us, even if we have lower standards than many of the more expert gardeners around us 😂

What helps me is to try to manage my own thoughts. When I'm getting on a doom loop I catch myself and ask myself whether what I'm thinking about is actually helpful, either to me or the people I need to hold myself together for. Is there something from that thinking that I need to act on? If so I action it straightaway or add it to a list to be done soon.

If it is not helpful than I don't let myself dwell on it and force my mind to think of something useful instead. It has taken quite a lot of practice, but it has genuinely helped me.

Think of those negative thoughts like a train pulling into a station. Your instinct is to get on board the train. But that will lead to more panic and negative thinking. So don't get on the train, see the train, acknowledge the train, but don't get on board, let it pull out the station and not take you with it. It sounds ridiculous but it has helped me hugely.

Also I'd definitely look to use his private medical insurance. In my experience treatment will be quicker, you'll get proper amounts of time with a consultant to get all your questions answered and he may have more treatment options.

Also, no matter how crazy the world is, you must make sure that you eat three times a day (even if you have to lower your standards) and have regular drinks. It's a small thing, but you can't survive this if you're not doing the basics to care for yourself. Put your own oxygen mask on before helping others.

Sorry for the essay, but please know I'm sending lots of positive thoughts your way. You sound brilliant, and I suspect you're coping far better than you might think.

Oh also, re the private healthcare. I can help you navigate that as we use ours a lot. Is it through his employer?

Once you start the ball rolling it is much less hassle than the NHS and you shouldn't need to spend hours looking at the policy.

When I went through a bunch of existential stuff like this, I wish I had asked for more help. I wish I had just told friends that I was really struggling and asked them for practical things.