relationships and mortality, how to mtfu

kevers, yeah it helps, I’m thinking the fact that she’s not being rushed into surgery tonight means that there are options that need to be considered, and so long as there are options there is hope.

And thanks everyone, I do feel a little calmer and a little less freaked out than when I wrote the original post which is more than I could have wished for.

Gonna call it a day for now, the nurse is probably right I do need to try and get some sleep as I expect tomorrow may well be a long and fairly raw day especially once the rest of our families are told.

Get some sleep dude, be strong as what ever happens will happen…..you are just along for the ride. She going to need you rstrength and support so look after the both of you and I wish you both the best.

OP – Remember to take care of yourself through this! I’m not saying that you should do that to be selfish, but so that your support her as much as possible. If you’re sick and run down, you won’t be able to do as much for her.

Make sure that you eat decently, get a reasonable amount of rest when possible (easier said than done at times, I’m sure) and try to do some exercise both to stay in shape and to relieve some of the incredible stress that you’ll be going through. Maybe a friend or relative can visit for a couple of hours once in a while to give you a a little time to clear your head. Don’t be afraid to lean on someone else a bit!

You and your Mrs are in my thoughts; I hope things turn out okay for you both.

As everyone else, wishing you the very best outcomes OP.

Hoping today is a good one for you.

Separated from the wife for medical reasons for a coupla nights last year. Missus was pregnant, miscarried and needed emergency surgery so although not quite the same I can imagine how you’re feeling.
Had went to the Gp cos she was a bit sore, rushed to hospital then once I’d went home in the early hours was called to say she was going down for surgery to stem the bleeding.
If you’re home alone it’s hard being alone with your thoughts- was in bits at the time but was such a shock to us both and I wasnt really able to take it all in.
I was very lucky in a way cos we had our boy at home so had to look after him which gave me something else to think about. Also had family and friends who were a great help too.
Hopefully you’ve got some support too mate- talk to people- it helps- on here or in real life- no ones gonna tell you to Mtfu- think you’ve done fine so far already.. Try and get some sleep if you can.
Sorry for rambling a bit. You’ll both be in my thoughts.

Puts my day in perspective…

All the best from everyone in this house muppetwrangler

tga

Wishing you and Mrs MW the best my thoughts are with you.

muppetWrangler,

Hang in there fella, as you say as long as there are options there is hope. Your post has bought a tear to my eye bobbing around out here in the North Sea. I’ve never met anyone on this wonderful forum (yet) but today has reminded me why it is so great – for all the daftness and bickering we are a great, strong supportive community. We are all here for you. Hope you and Mrs mupetWrangler get some good news soon.

Thinking of you, Paul

muppetwramgler – my thoughts and prayers with you.

All the best to you and your wife. Every case is different, but my dad had a brain tumour and lived for over fifteen years, ten of which with no ill effects other than the occassional seizure. Hope you have a good outcome,

Words seem so inadequate: I feel for you both, I imagine you must be very scared. Keep posting on here, keep talking, this can be a very supportive forum, there are folk around 24 hours to sound off to.
A friend at work had a lump in her brain, turned out it was totally benign, she is back at work – exactly the same as before. I have everything crossed for your lady.
Good plan to write down what the doctors say, don’t be afraid to make them repeat or rephrase, they see these things a lot, we see them once, it’s a lot to take in. Good luck from us x

Thoughts are with you mate. No need to MTFU you’re handling it brilliantly from what you’ve said here. If you need to vent this is the place.

Thoughts are with you MW, tough times for you and your other half ahead and hope it goes as well as it can.

Rest up and wait until you get an informed opinion to understand what you are dealing with, until then your mind is going to do all sortsof mental maths to get answers which you may not need to even think about.

Whatever does happen makesure your wife knows you love her and in the chaos try to get some quality time. You’re gonna have times of strength and times of emotion and there is no manual for how you deal with these situations but I sure you’ll get through whatever happens as we have a canny knack of overcoming a lot more than we think possible.

Stay strong and healing vibes to your other half.

mW: Thoughts and best wishes to you and yer missus. Dreadful news, but lets see what the results show!
My neighbour had a brain tumour removed this year and has an excellent prognosis, but it all depends on location, size and how aggressive it is.
Cancer sucks, but STW is one of the best anti cancer treatments and support networks I have ever seen.

Use the support from the sincere and kind people on here that offer it to you.

love and regards.

chb.

Just spoke this morning and there is no change for the worse. Aside from the stitches in her head and the burden of knowing what’s going on she seems exactly the same as normal which I’m taking as being very positive.

Excellant news.
Keep positive and try to stay on top of things when you are with her .
Maybe use your smart phone or mp3 payer to record the q and a with the consultant?
Hope you get the best outcome possible.
Respect to Bwwarp too .

There’s nothing really of any use I can say.

Just that my thoughts are with you, be strong and good luck

best wishes to you both.. only advice i can offer from personal experience is dont go searching the internet for diagnosis/prognosis all you get is the negatives.

listen fully to the dr’s ask every question you need to. they want to help so askaway, checkout mcmillan they re fantastic..

and the solution is out there.. really get on the consultants case ask ask demand and things happen

good luck

Can’t say anything else. Just all the best and we’re thinking of you.

Big positive waves from me and Mrs. Willard too. We’ve both had family run-ins with cancer in the recent past, so we sort of understand where you are at.

Stay strong though, give your wife a big hug when you see her and let us know if we can do anything to help.

I just had a thought about a practical suggestion. If your Mrs would not want someone going with to the consultations can you do an audio recording in your phone so you can listen back when a bit calmer? Just a thought.

Anyway – I hope all works out well for you both. Positive vibes from here and fingers crossed. These moments are the ones that define us and sounds like you’re coping astonishingly well, even if it doesn’t feel that way to you.

Thanks for posting this, makes us appreciate what we have.

All the best to your missus and you. Had a couple of run-ins with cancer with family and friends recently, and thankfully all is good now.

Paul

I’ve written and deleted something a thousand times here, I can’t write it without sounding like I’m trying to talk about myself in a me, me, me style. I’m not articulate enough to get this right. However, I do understand from the patients point of view.

In my experience, the hardest time for both parties, is the time you’re alone. This is in no way comparable, so forgive me if you think I’m making out it is (and also if you’re bored of hearing this story 🙂 ). But two years ago I was sent to hospital by my GP with numbness and pins and needles in my feet and hands, which had started to spread up my arms and legs. Whilst sitting in A&E, my lips, side of head and face started to go numb. I had blood tests, and various other examinations before being referred on to neuro, who sat me down and pretty much turned my world upside down and sent me over for an MRI with only a thirty minute wait despite being initially told that there was no way I could be scanned today.

This is when my wife finally arrived to wait at hospital with me, up until now all she knew was I’d been to the GP’s and called down to the hospital for some tests.

Over the next 48 hours, I went from being normal(ish) to completely paralysed, unable to move anything except my eyes, I couldn’t see, speak or really communicate, however I was quite aware of what was going on. I ended up being ventilated and in ICCU for five weeks. In this time, the scariest, and worst part was the initial 48 hours, that’s when I was scared, when I cried, but the strength of my wife brought me through it. She was outwardly calm, and in control whilst I was losing it inside. The constant memory I have from when I was intubated, and sedated heavily, which was probably the first week before I had a tracheostomy, was my wife, comforting me and telling me what was happening and what was going to happen.

Now, the main, and very real difference in this situation was that for the first 48 hours, we didn’t know what was happening. I was convinced I would die, as nobody really told us what was happening (other than the neuro consultant telling me that she wanted an MRI on my brain, and that she had to rule any issues out there as part of diagnosing me with Guillain Barré Syndrome, which we knew nothing of at the time). My wife was convinced I was having some kind of breakdown, and had basically cracked up.

After 48 hours or so I was moved to ICCU, the difference here was the consultant told me EXACTLY, what was happening, and what would happen. I asked him if I was going to die, and he told me that I had “good odds, maybe only a five percent chance” this made me feel strangely better, but at this moment in time he was estimating a six month or so hospital stay for me.

If you’ve got this far, I’m kind of trying to say that you just need to be there for each other. The illness is irrelevant, as neither of you can do much about that part. But the support/staying strong bit is probably a two person thing.

Best of luck

words probably won’t make difference but thinking of you, positive vibes, and don’t forget to look after yourself.

As others have said, I can’t really say anything adequate or practically helpful. But be strong for her, and there are a lot of thoughts from STW with you both. You will get through this. All the very best.

Post up on her when you think you need. We’ll be here.

And hats off to Bwaarp.

The medics will understand if you don’t take everything in at first , get them to go through everything again.. as has been said no need to mtfu you are and will do all you can. Best wishes in what is an incredibly difficult time.

mW at the very least thats good news you have had this morning.

I am not sure but I think the medic have to alway prepare you for the worst case rather than the best. So she ha had the op, and appears normal which is brilliant.

A has been said no matter what make sure she knows you love her, I am sure she does anyway. Your doing a great job just look after you so you can look after her as well.

I am sure its brought a few of all of our lives into perspective and a few tears to a few eye, mine included.

Stay strong.

Not sure what to say but can only wish that everything will turn out well.

Rubbish at words, seems a bit insignificant but wishing you both the very best……

Total bummer. Hope it works out well in the end. Thoughts with you and the Mrs.

Best wishes to you both. I hope the outcome is good.

As lots of people have said, you need to see what the specialist opinion is and go from there.

The clinic should ask your wife if she wants a copy of the clinic letter that the specialist will write to your GP. It is her right to have one so ask if they don’t ask you, and even if some of the terms are not familiar to you, it is a good way of having a summary of all that is said to go back over later.

In addition, Neuro units often have specialist nurses whose job it is to make sure you both understand what is going on, although I don’t know if this is the case in Oxford.

My heart goes out to you, your Mrs and your family.

My cousins Mrs died young. They were wealthy, happy and had everything going for them. He went very quiet after the initial grief but gradually came back out of his shell.

He said that initially he could not see any end to his pain but gradually he became accustomed to it. He says that he never forgets but the pain lessens.

I hope that you do not have to face that pain but remember that after he lost his wife with just three weeks notice, he still managed to get through.

🙁

Hope it all goes well, nightmare situation.

Best wishes hope everything works out ok for you both and family

Firmly and truly all the best. Nevermind mtfu. Be a human.

Once upon a time, I was given some very bad news…

You’d be surprised what hope, love and belief in each other can achieve.

The wife and I would be more than happy to meet you guys for a coffee somewhere; just let me know via the email in my profile.

Best wishes,

Mark

(Currently the longest cardiac and skeletal AS survivor on Earth-all because of love)

Thinking of you both

Thoughts and prayers to you both

Best of luck to you both and I hope things work out well.

Dont worry about not being able to cope, because you will cope. Everyone copes, because at the time there is no other option but to cope.

Bullheart – your story is fantastic and really quite inspirational. I hope you are keeping well.

Just back from the hospital. She’s been transferred tonight to the John Radcliffe which I think is a good thing, we were only treading water until she got to the right hands otherwise. The move appeared to instigated by the JR rather than any change in her condition which remained outwardly perfectly normal. So we are no worse off than 24 hours ago which right now seems like a result.

Managed to tell all the family this morning which was always going to be hard but the more friends and family that know the easier it becomes to talk about rationally.

We did spend a fair bit of time by ourselves this evening and managed to talk through some of the potential outcomes as well as some of the more practical aspects of how we’ll cope during what will hopefully be a time of rehabilitation for the most part it was a grim and very raw conversation but it was as honest a chat as I think you could have had and we both felt like it needed to be said out loud. Somehow that seemed to clear the air and allowed us to just be us for little spells which was lovely.

There was definitely less feeling like a passenger and more feeling like we can work a route through this whatever the outcome.

Again thanks for all the kind and often inspirational words.