Hello there, 
I have just joined too.... so sorry to read of your wifes diagnosis, its all very scary and worrying. I am awaiting on my diagnosis tomorrow, Today I was told that my 10 litres of fuid drained away from my tummy was not malignant, tomorrow I should hear about the Mass. I too couldnt walk far, my tummy looked 9 months pregnant and my legs and feet swelled up too. Again not a drinker so I knew it wasn't that.

I had my hysterectormy two weeks ago and am recovering well, swelling has gone and I feel a lot better and can walk again, eat and sleep and get comfy.

Hoping that she feels a lot better when the fluid is drained away.... best wishes to you both, stay strong... Its a very scary time..

Hi

So sorry to hear of your wife's diagnosis and I would like to welcome you to this forum, which I hope you will find helpful. Please read my posts as I too was diagnosed with ovarian stage 4 ovarian cancer 2 years ago. I'm sure your wife will feel so much better once the fluid has been drained, it's incredibly uncomfortable!

Feel free to ask any questions you may have, and I'll do my best to answer them.

Take care

Jan

Hi Devon27,

You will never know how much reading your reply has meant to me this morning, knowing that there's someone else out there going through the same experience (not that I would ever wish it on anyone, but you know what I mean!), because, for the last 4 weeks - since my wife was told her CA 125 levels were dodgy completely out of the blue, and it all began -  it has been an almost unbearably lonely, and bewildering experience for both of us. Thanks for sharing what you're going through, I'm so glad to hear that you've been drained of the fluid, and I hope that the news about your mass is positive. The fluid build-up in my wife has been the worst aspect of our experience so far, because it has practically left her disabled, and has happened so quickly too.

I wish you every best wish for the future and for your recovery, and thank you for taking the time out to reply.

L&H

Z

Hi Jan,

Thank you so much for replying to my post, your welcome, your kind wishes, and for sharing your experience with me. I will take time out later today to read your previous posts, and learn from what you have gone through. Yes, the only complaint my wife has had really is about her huge tummy from the fluid build-up, she can't wait to get it all drained away. It has made her so miserable over the last month, and - of course - has practically left her disabled. Other than that, she has felt fine in herself. It hasn't helped that she is so active, always running around and doing stuff. 

I'm sure I'll be back with lots of questions for you!

Again, thank you, and best wishes for the future!

L&H

Z

Hi Z,

Sorry to read about your situation - welcome to the forum, I hope you find the support and information you might need along the way.

I guess it is too early to ask whether her cancer has been graded and staged. The only advice I can give is to remember that any survival statistics you may read or are given are only ever averages and that no individual patient is average. The average stats ignore things like age, fitness or co-morbidities so are often negatively biased. Avoid Dr Google and only trust information from authenticated websites like CRUK, the NHS or MacMillan. There is an awful lot of nonsense out there, some of it simply out of date (survival rates now are far better than even ten years ago) and some of it unscientific to say the least. 

How far along the spectrum is your son? My own youngest son is autistic (at the Kanner end of the spectrum with associated learning difficulties) so we've had to give him my news in language that he understands. He is 30 now, but he has the understanding of a 3 or 4 year old, so we've just told him that Dad has a really sore tummy and keeps having to see a doctor at the hospital. In the past we've used social stories to explain complex situations to him. 

Good luck!

Dave

Hi Dave, thanks for taking the time out to reply to my post, I really appreciate it.

My wife's cancer hasn't yet been graded or staged, I guess we'll find that out shortly but we already know that it has spread. At the moment, all my wife wants is to get rid of that abdominal fluid, it is crippling her. That should have been done yesterday, but because of other emergencies at the hospital she's in, it hasn't. She's a very active woman, and just wants to be able to walk/ eat normally again. I've promised her the biggest steak on the planet once she's been de-ballooned and back home. 

Experience has taught me never to consult with Dr Google!!! Two years ago, Dr Google convinced me that I'd got throat cancer. Turns out, it was just all a result of anxiety!

Do you know Dave, I don't think either myself or my son were ever informed how far on the autistic spectrum we were. I know that I definitely wasn't. We're both high-functioning Aspies. I'm 50, diagnosed 15 years back. My 7-year old son was diagnosed about 2 years ago. I have an older son from a previous marriage, he's 25 now, lives with his girlfriend, and was also diagnosed with Asperger's when he was a kid. All three of us certainly have our personal little 'peculiarities', but generally we all manage pretty well. I've held down the same job for 26 years, I get anxiety with travelling to and from that job on public transport, and I can't use telephones, other than that, I just manage.

Strangely enough, my wife works with students (16-22 years of age, generally) who are quite high on the autistic spectrum. I know, from what she tells me, that they struggle with often the most basic of things. Myself and my two sons don't have those particular struggles at all. We get by, freak out at the slightest hint of change, but cope with things in general (but with a delicious smattering of 'anxiety sauce' poured over everything)!

Having said all of that, I have no idea how I will explain to the little 'un, should his mom die (I'm a realist, I know it's a possibility). It's a bridge that I'll cross when it happens, hopefully it'll never come to that. I really hope that your own situation improves, it must be really hard trying to explain to your son what's happening to you right now. Dave, I'm here on this site now, I never wanted to be but it is what it is and I feel a part of a community, and that's a good thing. And I'm always here for a chat. I wish you, and your family, the very best for the future. Sorry this has been a long-winded reply! 

Take care, and again, best wishes,

Z

Hi Z,

Thanks for your response. I hope your wife gets the fluid sorted out soon - it must be frustrating knowing  that relief is possible but has been delayed. 

I once read somewhere that we're all somewhere on the spectrum. I'm convinced my Dad has undiagnosed Asperger's, but he's in his late 80s and has managed to thrive without a diagnosis :-) I sometimes wonder whether, as a society, we medicalise what used to be/should still be accepted as healthy deviations from the norm. 

We're pretty chilled about my son, he seems to accept without any issues that people, like pets, inevitably die and as long as it doesn't change his daily routine too much he can cope with it. I guess preparation is everything, all of us can only cope with so much information at once. Whoever we are, it takes time to absorb and process bad news - but none of us like to be taken by surprise by events. 

Best wishes - I hope the fluid is aspirated soon and that brings some relief.

Dave

Hello

im new here too and I just wanted to say your post was really touching and it’s important that you realise you’re not alone, this forum is a place filled with love and hope and everyone supporting one another and that’s what we all need sometimes 

best of luck to you 

Hello again Dave, thanks for your reply!

My wife's now scheduled to be drained on Monday, and is still in hospital. Other than the discomfort from all of that fluid, she is fine in herself. We always seem to have a good old laugh when we meet up in the hospital, despite the dire circumstances. Today we discussed fashion choices for when the chemo inevitably makes her hair fall out. I think she's going to stick with the full-on 'Ellen Ripley in Alien 3' look, and not bother with wigs and the like. Skinhead. I suggested a pair of doc martens and a swallow tattoo on her neck to complete the transformation. 

When I got my Aspie diagnosis, the psychiatrist was very, very interested in some of the things that I told her about my old man. Yep, I reckon he's an aspie too. I think you're right, I think that we do tend to over medicalise these days. When I was a kid, I was a notorious 'fussy eater' and used to drive my mom crackers. But the aspie term wasn't really knocking around back then, as I say, the only label I was ever given was 'fussy eater'! 

Kids never cease to amaze me in how resilient and adaptable they are. Me and my wife always thought that our young 'un would go into absolute meltdown mode should one of us ever get ill and have to go into hospital. It hasn't happened. He's just gone along with everything and been an absolute star. 

Thanks again for the kind wishes, and all the very best to you too Dave!

Cheers,

Z

Hi Daisy,

Thanks for your lovely reply to my original post. I was in a proper state of shock on Wednesday, the day that we got the dreaded confirmation of OC (even though we'd suspected as much anyway). The replies that I got the next morning literally got me through those first few hours of Thursday. You're absolutely right, the forum is indeed a place filled with love and hope. And it feels great to not only get support, but to be also able to give it back, too. I've been amazed at how positivity can be found in such grim times for all of us. But it can. And that makes it so much better!

Best of luck to you too, Daisy!

Cheers,

Z