waiting for op and also biopsy results and just want to talk

[justwanttotalk]

I've had a huge multitude of health problems gradually getting much worse over the last year so I've been seen a lot by doctors. I'm a long time poster but now frequent name changer so if you recognise some of the details please just let it be.

In a small nutshell I have a really terrible immune system, lots of random bleeding, heavy bleeding after sex for around 24 hrs, lots of pain in abdomen and lower to middle back, recurrent skin infections either soft tissue or fungal in my groin, lots of clear dishcharge etc etc

I just had an internal scan and it was found I have a really large cervical erosion which bled badly while being examined so I'm booked in for a week & a bit to have that sorted out with an anaesthetic & cauterizing it. Also while the scan was being done the doctor saw some dodgy looking tissue and decided on the spot to do a biopsy on it so I'm waiting on that too, results again within 2 weeks.

I guess what I want to talk about is that I've had a feeling there was somethingquite wrong for a long while now, and no one I know will talk to me about it. My DH acts like I'm ridiculous for even considering the biopsy may come back showing cancerous cells and that really hurts my feelings. Its done in quite a patronising way and while I know it is because HE doesnt want to contemplate it, I need to have someone who will just be in reality with me for 10 minutes. My sister just sent me and email that said "I'm sure it'll be fine, keep me posted." My Mum said "yeah, female plumbing's a bitch"

But for me, I'm in regular pain and bleeding every other day and dealing with the painful skin infections in my groin etc and thinking, that doctor said he wasnt going to do a biopsy. THEN he went in with the scan and saw this white area on the screen and decided to do a biopsy. So that worries me, yes! And I just want to talk about it. But no one will. I'm know it is unlikely to be cancer but not being able to voice it with some sympathetic listeners is making me feel worse.

I think sometimes thinking about the worst case scenario is the best approach. Not that you'll really get your head around it, but at least you'll start to consider the "what ifs".

So what if it is cancer? What treatment will you need? How long will it go on for? How able to function will you be while it happens? What are the practicalities of that? Think of cancer as a curable disease. The best of luck.

thank you I just feel like if I dare mutter the word as something I am worried about everyone scoffs at me. Well - I've got as much reason as most people could have to worry so why cant I talk about it? Its me who is sick every day not them. I dont know the answers to any of the questions you sensibly asked either.

hi - just wanted to say that in my experience people just want it all to be ok,so they can't even contemplate it might be something like cancer - I say this because I had to go back for further tests following a mammogram and lots of people said 'oh it'll be fine' , except for my SIL who said she couldn't say that as who can know it'll be fine -which was sensible advice as it prepared me to expect it to possibly be bad news . It turned out to be bad news,but I had it in my my mind then that it might be and was therefore prepared to accept what I was told and wasn't too stunned by the news..still a shock, but I was a bit prepared. If it is bad news then you just deal with it,what else can you do.
So sorry that you are having such a horrible time and really do hope for the best for you xxx

The others have put it much better than I could, but just wanted to add that I am sorry you are going through this. It must be very lonely to feel this worry all by yourself.

thanks. I think the other thing that really makes me angry is I have been suffering with terrible health for a long time. And this stuff has been getting worse and worse. It feels really fucking bad to live in my body. So when I try to say I think its a "decent" chance it could be cancer and I'm brushed off as "oh dont be silly" its very much minimising what I am going through. And that is really lonely.

My mother died from cancer when she was only a couple of years older than I am now. And for years I was paralysed by it - the grief, obviously, but also the fear that I'd get cancer too and and early death was inevitable.

A third of the population have cancer at some point in their lives, but a third of the population don't die from cancer - a lot of cancers are very treatable. I sound like I'm trying to trivialise it, and I'm really not, but I do think the practical, pragmatic, realistic approach is the healthiest. Quite how you persuade your DH and family of this, I don't know.

I agree that I think my chances of Not dying are greater than the odds I will. But if I get DX with cancer I will feel at the outset it is a 50/50 and just do everything I can to increase the odds in my favour.

Im like you, need to prepare for the worst, then anything better is great, however, when DH was sick, I didnt dare think of the worst thing. Things are very different when its your other half/sister/daughter ect. They need it to be ok, they will not consider it to be anything other than fine, its normal.
Just chat on here, do think about other things it could be other than cancer, polyps or non cancerous tumor, but do what you need to do to cope.
Do you have an appointment for results??

yes,we are here if you just want to vent and get it out of your system - I do know what it's like waiting for results and dealing with a cancer dx - and knowing what you're up against makes it easier than the what-ifs and not knowing for sure.

thank you. I just wish the wait for results was over. I feel resentful anyway that I've had to carry on normal workload being sick for so long but now I just think damn it I AM sick and there is proof now so can I just fucking rest! But I cant. Mothering is clearly not a job you can take time off of and I work evenings as well which is essential for food. I've just filled out the form for DLA as even if I dont have cancer I'm sick as a dog and have been for a long time. My specialist said the other day "I consider you a disabled person" I was part happy I had his support so blatantly and part gutted.

it sounds as though you've had a truly shit time-am so sorry- whether it's cancer or not you deserve to be treated and looked after and given consideration as you aren't well at all. Waiting for results is so hard-am thinking of you -hang in there.

thanks. I just started to cry in my bedroom thinking of it all. I'm going to go get in the shower. I'm finding it hard to be around my DH at the moment.

have you tried explaining to your DH that he is undermining you by refusing to validate your (totally understandable) concerns? Even if he is in denial himself, he is being hugely unsupportive of you in this.

"Brace up, it's only a flesh wound, come back when your leg's fallen off" is deeply unhelpful as an attitude from anyone, and very hurtful when coming from your nearest and (supposedly) dearest.

Do talk to him though - if the diagnosis is not good, he needs to be prepared for it too.

I tried today after my last post but I ended up getting too upset and asked him to leave the room. Then I literally cried myself to sleep which I dont normally do. I just woke up now I am about to go to my evening job.

He said he doesnt want to speculate. Well that isnt the same as actually saying to me the couple of times I have ventured to say the word "cancer" something like "that's totally ridiculous you have no reason to think its going to be that you're just focusing on the worst possible scenario"

well - yes it is the worst scenario for biopsy results, fair enough, but I have got a reason to think there is a decent enough chance it could be that because of all my problems and what the doctor saw in the scan... I mean they dont do biopsies for kicks do they. And still of course I have terrible cramps, bleeding, discharge, all of it. I feel so shitty and it just makes me not want to speak to him because I feel like he is telling me I'm being an idiot.

Anyway I have to go to work now.

I think he just sounds plain scared - it must be very hard for him too to see the person he loves in pain and with the anxiety of biopsy results hanging over them.

he just seems uninterested. he cares for me when I am suffering but if I'm not he acts like it doesnt exist. But its always on my mind.

I had bleeding after sex.
Smear showed abnormal cells-classed as precancerous, I think.

Laser treatment sorted it out.

So it´s possible that you have an erosion plus "abnormal" cells that also need removing.

I always think worse case scenario-hoping that that isn´t the case, of course.

some of my blood is coming out actually black. I'm wondering what that means. Its black as opposed to the horrible sludgy end of period brown.

Poor old you - you really are going through a horrible time of it aren't you (Hope you don't mind an un-MN-ly hug.)

I think black blood is probably just a sign that the blood is old and has flowed rather sluggishly, so nothing like as worrisome as it probably looks.

I hope you get good news from the biopsy soon and also that they come up with a treatment to help you feel better very soon. Wish you were getting more support at home, it's truly horrible to have to keep going as normal when you feel so ill.

Poor you Just, that really sucks - my first husband had cancer and he went into denial badly (lasted the course of his illness) whereas I just wanted to talk through all the possibilities. Obviously because it was 'his' illness as it were, I had to find other outlets to discuss my worries.

Keep talking here, do you have anything specific you need answering or want one of us to find out for you?

BTW I googled the black blood thing and it is when the blood flow slows and oxidises.

the blood must be coming from different places or speeds or something because some of it is scarlet. I have really bad cramps, but all the time! I bleed if not every day then every other and terrible pain up my back. My DH has talked about it a bit recently after I was on the phone with my Mum sobbing in the middle of the night (she is in America) I still just wish I could rest more, it really hurts and I am so tired.

The biopsy was a week ago today and they said the results would be in 2 weeks so I'm halfway there.

I'm really tired. Not so depressed but really tired.

Not surprised you are tired if you are not sleeping well and uncomfortable, also the worry of not having a diagnosis will make you tired.

The only comfort with this one is that a diagnosis (whatever it is) may bring some relief and you can then develop a strategy for treatment.

Please try and rest when you can and be as open and honest with your DH as possible, you NEED him to support you whatever his own feelings are. He in turn needs to get some support for friends and family etc.

still waiting on results of biopsy and the op is this friday. I'm really sick with a cold or flu now so feel truly horrific. hooray! lol

the black stuff may be from where they took the biopsy. I had a LLETZ a few years ago and there was allsorts of bits of tissue etc for a week or so afterwards.
At the time when I had the LLETZ the consultant thought it might well be cancer. I work in screening so knew fairly well that would mean treatment etc. The waiting was bloody awful, just felt like I wanted to know, so I could get on with dealing with it...well it wasn't, which was a big surprise. DH was v.shocked - he was assuming all along everything would be fine but he's a 'lalala fingers in ears-head in sand' type; I'm 'assume the worse and work backwards' type.
Sorry its really any advice, try to hang in there, keep your strength up. I don't think anyone has suggested jo's trust website, which is for women who have/are being treated/investigated for cervical problems. The link leads to the forum. There's alot of advice on there & a forum where they're good at support.
Rest up and take care.

Thanks, I've been on that forum now