Hi April,

I’m so sorry to read your post, and to be honest there are people on here with much more constructive advice that I can give. I just lost my husband 3 weeks ago he was only 45 and I am 46 and my heart is breaking.. so I can only imagine what you are going through.

the only advise I can give is stay positive he is still here for hold, cuddle, laugh if possible and tell each other I love you... that’s what we did. Don’t waste time worrying about after live for today. 

Sending you a hug, it’s hard but stay strong x

Thank you so much for your reply, I really am so very sorry for the loss of your Hubby, it’s a cruel evil thing Cancer, I not long lost my Mum to bladder cancer, it was just 3 months from diagnosis to we lost her, we were holding her tight. My Dad he couldn’t live without her, he tried but he couldn’t do it & I found him just gone in his bed ( broken heart syndrome) he wanted it that way, but for him to get his wish was a shock. I am my fathers daughter & I adore my husband, I’m terrified of being without him, I’m dreading being in the place you are, oh jeez I really am sorry my heart hurts for you , for us all. It’s the guessing too, because they wouldn’t give any answers to much really, was very blunt but hubby is having this stent put in & biopsy, he doesn’t want to stay in the hospital at all, I guess there will be times that he has too. We need time, we are about to move home, we want to have time together there. I’m so terrified that they will tell us just months like my Mum, it’s not enough, for ever is never enough but this is all crazy. I feel like I need to scream & scream but instead I’m here fussing all around him scared to go to sleep & making deals with my family already passed to help us, give us time.

Im sure you felt exactly the same, I just want them to say they can help him.

Apes xxxx

Hi April,

you’ve had so much to cope with and I’m so sorry to hear of your loses, it seems you’ve had more than your fair share! Scream scream scream if you need to... my place used to be the car when I was alone. 

After reading what’s planned for your hubby I’d suggest doing some searching on here... I can’t give you peoples user names but I know there have been posts shared with similar experiences to yours and in all fairness there’s been positive stories x

so hard to do but stay positive otherwise it’ll all drive you insane, and make sure you have people around you to support you... hope you have others to rely on?

i come on here quite a bit now, so anytime you want a chat xx

Thank you for your reply, the Doctors are now even more baffled & it seems my hubby is becoming a bit of a mystery to them all.

He went in yesterday for biopsies & to have some stent fitted in the bile ducts.

The tumour is there, we even have a photo of it, BUT.. They no longer needed to fit any stents as his Jaundice has pretty much disappeared on its own & he is gaining weight, eating like crazy, he is constantly hungry like his body is trying to make up for all the weight he lost, he has no pain at all, no nothing, So now we don’t have a clue what’s going on & neither do the doctors. We have no idea what’s going to happen next, they just kept saying his case is being discussed by a group of doctors & depending on the results of the biopsies they will decide what to do. It’s horrible not knowing what is going on, knowing they are holding meetings because they are so baffled by him, we don’t get invited to these meetings, I really am not coping with all the waiting & not having a clue what’s going on, I have fibromyalgia & of course it’s in a flare, we are 3 weeks away from moving home and my husband is my Carer so we are now kinda caring for each other, not much else we can do is there really?? 

I wonder if anyone on here has had anything like this happen, how on earth can the Jaundice fade like this & how can he be gaining weight? How can he be feeling better? He looks better!! And yet no denying that Klatskin tumour is there. He says he always knew he was supposed to be famous, I always say he has healing hands, maybe he is gonna be a medical miracle & heal himself!... Well we can hope can’t we?

xxxxx

That’s great news although baffling... keep positive x

We are trying to stay positive, when first diagnosed the doctor said there was no cure, but now because of the weight gain & the strangeness of the Jaundice reversing itself like that, I’m praying maybe, just maybe it's early enough to remove the horrible thing, no denying it’s in him, it’s been diagnosed as a Klatzkin tumour but I do know if it hasn’t spread there is a operation, I think it’s called a whittle procedure or something like that, I also know that it’s a huge 8/9 hour operation & a risky one.

it has to all be weighed up, I guess firstly by the doctors & then by Hubby, but I will ush him into what ever is most likely to give us the most time.

we was looking forward to when  all the children to grow up & finally left  home, we started young. Being only on our early 50’s we thought we would have time alone together to do some things we want to do & behave like a pair of teenagers without cry’s of “ Ewwwwwww.... stop it!” ... Our own place with nobody else’s mess to clean, we are 3 weeks from moving into our little flat so we are living in a big empty house of boxes right now which isn’t great, moving home & downsizing is difficult, I was struggling but now it feels like nothing, it’s all paled into insignificance & all I can think of is Martin, I don’t even like us going to sleep now in case we are wasting time together. I’m so terrified of loosing him I can’t put how I feel into words it’s all so mixed up & now all this confusion on top. I mean.... How on earth can the Jaundice go away on its own?? How can he be gaining weight after getting so thin?? How can he be eating everything in sight with no pain at all?? I feel like it’s all driving me crazy so goodness knows how Martin must feel inside. 

This coming Friday we’ve to see the consultant, he will have results from the biopsies, I’m dreading bad news, I feel sick with fear & I wish it was me not him. xxxx

Try and have some faith in the higher power. He's clearly on your side. Doctors are wonderful but they don't know everything. Try and take each positive sign as hope. Thinking about you and your husband. X

Hi Apes I've been reading your posts with amazement!

Can i ask please has he had any treatment?

Have you started using any natural home therapies?

Have you changed anything in his eating or drinking?

Also, where are you and which hospital are you with?

My boyfriend Steve been diagnosed in August he hasn't had any treatment but we're using several natural protocols. He is fine, never been jaundiced but they gave him 6-12 months only and he is young 47! I'm trying to get every possible info for him, i haven't stopped researching since August.

Hi ya

im sorry to hear of your boyfriends diagnosis, things moved on a bit since I last posted.

Ok so as I said, Martin was gaining weight & the Jaundice went away on its own, they went ahead & did a brush biopsy of the tumour & took some pictures of it, they did not need to fit a stent owing to the Jaundice having vanished.

They diagnosed a Klatskin tumour.. Then we get a call from the consultant in the evening last week to tell us no cancer cells have shown on the biopsy they did.

So Mart has now been referred up to a hospital in London to see a specialist, I’ve looked the guy up & it seems he is very good, they now want to go in deeper & find out what’s inside of this tumour, there apparently is a phudo Klatskin tumour that for all the world looks & behaves the same but is a benign tumour. Now the consultant here has gone as far as he can, less than 1% of these things are benign & then it’s mostly women, so for Mart to have a benign tumour would be very very rare indeed, they will want to study him.

We are told even benign ones can be dangerous, made up of infections & toxins that can cause sepsis & other nasty things if they poke it about to much, it could of course contain cancer cells, it could just be a matter of checking it every 6 months for changes. So now we are right back where we started, not knowhat the hell is going on, it’s making me poorly I’m so terrified for him.

We are in Essex Hun, our local hospital actually has a cancer section but the place is falling apart at the seams, way to many people here, So London here we come, they will call us this week to say when he needs to go, gonna be a nightmare getting to London but I’m up for begging someone to take us, I’d never manage by train I’m disabled, I use crutches or a walker & I’m slow, so it’s gonna have to be car, one of the family will take us I hope!!

None of this feels real Hun, Marts now put on just over a stone in a month, he looks like he is getting better, he doesn’t stop eating, he’s up in the night even stuffing his face, it’s like he got so very thin, like bones with skin on & was bright yellow, now he is filling out, even got a little pot belly & it is actually chubb, not bloating, he has no pain to speak of, an ache in his back but I’ve a feeling it’s from loosing so much fat & muscle too & now it’s returning it’s trapping a few nerves, pain in his neck too which also feels muscular to me.

Anyway lovely, this is where we stand, first he gets told he is dying, then he gets told no cancer cells from the brushings, on the phone, on a evening by a very excited consultant, then we go to see him to be told how low the chances of it not being cancer on the inside of the tumour are, but also about that less that 1% chance that it could be benign as apparently nobody lives 16 months without any treatment & they sure don’t clear Jaundice without help & they do not gain over a stone in a month, nothing adds up yet that tumour is there, no doubt about that, just what is it & what’s it doing? They have no idea & if they don’t how are we supposed to?? 

Confused Hun? I am, confused, terrified yet trying to hold onto that now less than 1% chance

The doctors advice to Mart was, what ever it is your doing just keep doing it & so he is, also lots of food & plenty of water, that’s it.

just to make things even harder, we are about to move home, it was done before we knew what was wrong, he had been yellow around 4 months before I could even drag him to a doctor

sorry i jabbered on a little, I feel sick with fear, Mart, he’s my soulmate, we are together 24/7, he’s my carer, seems we now care for each other with the help of the all now grown kids. Mart is 55, I am 52

Good luck Hunny and tell Steve the same as was told to Mart, what ever he is doing, carry on & my advice with this cancer is to ALWAYS ask for a second opinion, it’s his right to do so... So I did

will let you know what happens 

much love to you, Steve & family xxxxx

Awwww thank you, I am trying hard to hold onto that tiny bit of hope.......

we both are

Much love xxxx