I was diagonsed in January - Had gone to my Doctor for over a year with EVERY classic symptom of the disease....she did not listen..I told her I could not breathe...one listen to my back and she diagnosed me with emphysema, ehich my Dad had died of a few weeks before, (so that was March 09) - Put me on inhalers - did nothing - I gained over 40 lbs...I lost that and about 10 more - she told me I was lucky...I went back for more weight gain.....FINALLY when I looked about 11 months pregnant and had 3.5 litres of fluid on my chest she gave me an internal exam and DAMN I had STAGE 3 CANCER...Had full hysterectomy and 3 tumors plus removed in February 2010 - they were not able to get 2 small lobes of cancer as were on my diaphragm so that stayed - I have had chemo every 3 weeks since March and just finished 3 weeks ago - Will have a cat scan next week to see whether the cancer is gone, back, there, somewhere else....I also have problems with my feet - this has gotten worse..I did fall and sprained my ankle, badly, so have been in physical therapy for that but I mean HURT - by bedtime I cannot stand the burning of my feet that goes all the way up my leg, to my upper legs, and rubbing ang rubbing does no good...for my sprained ankle I have found that doing my excercises under the bathtub tap, starting with coolish water and going to COLD feels great....because it numbs everything - I now do it to both feet and upper legs right before bed..I also have the heater on in my bed, even ehen it is 80 degrees outside!! and since it only covers 1/2 the bed I can move to warmth and cool all night....I have been VERY positive since the beginning of this whole mess....I had told my sister, years ago, that by the time I was 32 I would have this cancer, so I kind of feel like I have always had it.....strange but true, so my reaction, when my DR. told me was, "I'm not surprised....I have learned that ALL I NEED TO DO is get dressed and show up..the get dressed part ONLY VALID if leaving the house, otherwise, I just need to "show up" That helps your mind alot, I think..I have 2 daughters and a hubby, My hubby has shut down on me and I am very much alone in this whole thing...to get him to help I literally have to be in tears..very frustrating and very sad...although his work pressures are many, I was #1 when I first came home and now I am barely on his list of priorities, or sure feels that way...feel free to connect with me - ANYTIME!!! Hugs to you, I understand......Believe me - Oh, BTW I live in the USA in Vermont - a little teeny state in the northern part of the US....Hugs....

Hi Ladies

Dot- I can understand where your coming from with friends for me however I'm single and therefore my freinds are all nurses and while they found it difficult, not one walked away! As I say they each have there own strengths some can't cope with the dying subject some can, some want to wrap me in cotton wool while others have me out exploring for exercise - I need each of them! The most difficult one is my friend that I share a house with, she has been a total godsend but is not the best talker, having supported me through everything she went down big time and ended up with depression. We have ended up in a difficult position as she needs to talk about it but I'm probably not the best person for her to talk to but she's not good at talking to the others. Vicious circle, but we'll get there.

Kathym - Yep no problems at the time and still have fingers loosely crossed about the clots. This was only my first (but 2nd time round) so in big trouble if clots kick in this quick, been very naughty have increased my Asperin for the last few days as my injection sites haven't been bruising lol. Decided the odds were much higher with me clotting than bleeding. Help or hinder, buth I think it helps when things get complicated and you have to 'remind' Drs and think ahead for yourself but it hinders when the thought process is distrubted by chemo and the Drs don't realise it! My Drs have a habit of forgetting I'm a patient and at times a lot of what they say goes over my head as this is not my field of nursing. I don't get any aches or pains either, am coming to the conclusion that as others are not complaining bitterely about the taste that my smoking my have a lot to do with it! No fluid on my lungs.........yet!

Eileen - yes it was just like the way people treat pregnant ladies! Think you need to speak to your nurse or someone - why would you need a colostomy if there is no sign of the tumour (not only on scan but nothing on rectal either)? What is upper pelvis (mine was throughout the abdo which I think is outside the pelvic area therefore had spread further than the pelvis, it didn't stop them operating). My Surgeon left a small tumour on the bowel which he said the 3 remaining doses of chemo would sort (interestinly that one ain't come back!). I think you need to press a bit - if they say they can't really say, ask them what further information they need to be able to say. Don't get me wrong they cannot guarentee anything but they usually give advice on which way is best to go (often helped by, if it was you what would you do!) You don't have to take the advice but it should give you some options to consider.

Hi VermontMum, welcome to our group. My first 6 doses of chemo caused on end of problems with my feet, over the last 8 months it has slowly improved and now I just have a little numbness in the toes on the left foot. On Doxil/carbo this time and so far no numbness in feet or hands!

Take care all.

Jackie xxx

Dear Jayne

So sorry to hear thinks are still being difficult for you. Hopefully the chemo will rapidly deal with the problem causing you problems, so fingers crossed they investigate quickly and sort you out so you can get started. Its miserable when you feel ill so hardly suprising your struggling to feel positive. Did they manage to get the stent in? Is the diarrhoea due to the amount of laxatives you had trying to sort the inital problems out? I'm sure your in good hands so just try and hang in there.

Thinking of you

Jackie xxx

Hi Jayne,

it is good to hear from you but I am sad that you are having such a rough time of it. I do hope this will be sorted out quickly for you. The only way to look at all of this, is none of us would have stayed those happy people before our op if we didn't have treatment, it isn't really a good answer and I know you just want to get over all of this, fingers crossed for you. My heart goes out to you.

I take it you have asked for some pain relief/anti nause medication, seems silly asking you that, but I know someone who wouldn't ask for relief.

I will keep you in my thoughts and hope you heal quickly xx

Hi everyone else,

I don't wish to tempt fate... but no obvious side effects yet, in fact I craved cream cakes lol and my husband kindly went out to get some. Stay strong everyone, baby steps for us all

Love Dot xxxxxxxx

HI Jackie

Thanks for your reply. Yes, I had the stent put in last wednesday and WOW!! ..... My bowels finally opened after 12 days !! I was disharged the following day. However, I didnt feel 'right' when I got home and was re-admitted yesterday evening. The doctors werent exactly sure what was causing me to feel so unwell so I went to theatre this morning. Apparently they found fluid in the abdominal area and drained off just over two litres. Im a bit 'dumb' about everything thats going on, so not sure how this fluid got there or why. I shall have to ask the docs tomorrow.

Dot - Thanks for your reply too. I have been having endless pain killers. Including regular oral and IM morphine. The oral morphine makes me hallucinate !!! The other night @ 4.15am, I was trying to pick up all my blankets, as I thought they were a tray of roast potatoes - and I was trying to put them in the oven !!! At least it made me giggle when I realised what I was doing !!! A few nights ago, I saw two huge, jet black furry spiders ( the size of space-hoppers) hanging from the ceiling above my bed - good job Im not scared of creepy crawlies !!!

I'm still hoping to start my chemo on tuesday. Fingers crossed.

Love & Hugs to everyone from my hospital bed !! xxxxx

Hi Jayne

Nice to hear you sounding better! The fluid is called ascities and is part of ovarian cancer, it is normally one of the presenting symptoms though I've never had any! Bet you feel much more comfortable now its been drained and assuming thats what was making you feel so bad, it sounds like chemo as planned on Tues :) . Smiley face cos chemo is what you need to sort the underlying problem which is leading to all the others!

Keep enjoying the hallucinations!

Love Jackie xxx

Hi Jayne,

Sorry to hear you have been so poorly but hopefully back on the mend. I am glad you can still send messages from your Hospital bed as well as its a long day & night in those places and you need contact with the outside world. I will be thinking about you and hope your soon home and feeling better. Take Care Love Eileen. xxx

Hi, Jayne,

it is so good to read your last mail, you sound sooooo much better thankfully!!

I had terrible hallucinations, I heard a dog swishing it's tail for two nights running, I even rang my husband at 5am, whispering down the phone to tell him there were weird things going on, I thought the nurse was pushing drugs into me and I didn't want them, when I came to all my lines were pulled out. I totally believed the nurse had done it lol. This part will make you think I am an oddball but what the heck lol....I belong to a group of spiritual people who believe in healing and lots of other weirdo stuff lol, and when I got to talk to them about my op a dear friend told me he came to see me on two nights.... as a dog so he wouldn't frighten me lol.......sounds unbelievable but absolutely true, he calls it astral travelling lol. Wondering why I dare to write this lol, oh well it might make you all laugh even if you doubt what I say......take your pick lol.

Hi everyone else, got the achy legs today, I am up and down like a yoyo, tried just lying there but nothing works as yet. I also had shooting pains where my ovaries etc were but not on my scar, that part seems to have calmed a bit now, I think I have been fortunate so far, it is tolerable. My husband rubbed my bottom lol which helped a lot lol.

Hopefully my nutty rendition of my pals won't put you off me lol, later I might tell you a bit more about myself lol

Love Dot xxxxxxx

Hi Dot,

You know I just Love you all on with all your different stories to tell. I don't think your mad either as I have heard of Astral Projection were you can travel. Sounds scary though what you and Jayne went through. I still have my ovaries' as you know and get really bad shooting pains in mine after the chemo. I always say I wish I could look inside my body and see what's going on.

The restless legs are bad aren't they ? I am dreading them again this week as my 5th Chemo is tomorrow. The Nurse is calling today to take my bloods, I just hope they are low so I can have a weeks grace. What else do you get or feel with the Chemo ? Its interesting that some people sail through with no side effects.

I have found the further I get with it, the more emotional I become and have a weep sometimes over nothing.

Anyway Ladie's another day so hope your all waking up feeling bright and happy.

Love Eileen. xxxxxxxxxxx

Hi Eileen,

I woke up drenched in perspiration again, same thing, drop in temp 33.6. I wrapped up and came downstairs before 5am, made a hot drink and slowly my temp came back to normal. Nothing I read says anything about temp drop only if it rises, altough they do mention the shivers which I get, but I think that is the perspiration cooling me down. I find the pains in my pelvic area disturbing, it's as if I had the op again, but have told my self the chemo is after active cells and the healing process is still going on.

The nurse said she would ring me today to tell me what my team thought of the lesions on my liver and lung and the lung disease that the ct scan from the other hospital found. I will wait to hear from her but if she doesn't get back to me later in the day I am ringing her. I am still appalled that I was clinically free and all nodes untouched, yet they found several 5mm-20mm nodes. ugh.

The one thing I did read about was feeling emotional at times, I think this has to be natural with all the ifs and buts of this disease. I understand about not wanting the chemo, you have been on a roller coaster for a while now and need rest fingers crossed.

Hi to everyone else, hope things are going well for you all

Love Dot xxxxx

Dot,

Your experiencing the same as me with the temperature thing. Mine drops to 33 all the time and last time I went in it was very low yet I had an infection. I would have thought that it would go up but never has. The Dr's are a bit mystified as to why I go in with low Neuts and infection but no high temperature. I would be very careful Dot about feeling the chills as you could have an infection and because your temp is not high you will think your ok. I always go in and get it checked after ringing the ward. The first time I left it for ages and that is why I ended up in isolation because the infection had took hold.

I hope your phone call is good news ad I know what your going through with the good / bad news as we all do. I have everythin g crossed for you. Let us know what they say and keep positive..:love:

Love as always Eileen xxxxxxx

Hi Eileen,

I spoke to the nurse and she was just about to ring me, I am seeing the prof tomorrow and she said they would do a urine check then and just to take painkillers for now.

I asked about the ctscan and the lung and liver lesions and she said Prof wants to talk to me about it, I said can you tell me is the lung cancerous, she said yes they thought so, they could see a slight something on my first ct scan and it has now grown. They didn't think that the liver was anything as the node was clear. She said to carry on with chemo and I may have to have a bronchoscopy. It is so upsetting because nobody noticed it on first scan and If I had the chemo when I was supposed to it wouldn't have grown as much. They are going to check with ctscans and xrays in between chemo.

I will write again tomorrow when I have seen prof, sorry it is such a depressing message

Love to all xxxxxxxxx

Hi Eileen,

I spoke to the nurse and she was just about to ring me, I am seeing the prof tomorrow and she said they would do a urine check then and just to take painkillers for now.

I asked about the ctscan and the lung and liver lesions and she said Prof wants to talk to me about it, I said can you tell me is the lung cancerous, she said yes they thought so, they could see a slight something on my first ct scan and it has now grown. They didn't think that the liver was anything as the node was clear. She said to carry on with chemo and I may have to have a bronchoscopy. It is so upsetting because nobody noticed it on first scan and If I had the chemo when I was supposed to it wouldn't have grown as much. They are going to check with ctscans and xrays in between chemo.

I will write again tomorrow when I have seen prof, sorry it is such a depressing message

Love to all xxxxxxxxx

Hi Dot,

Well that is another shock for you, the only thing I can say is if it hadn't shown up on the previous Scan then its a new lesion so with the Chemo and maybe they will give you radiotherapy as well and it will go. I know its easy to say try not to worry but we can't help it can we. I do hope everything is ok for you and your family.

Keep smiling though Dot and we are all here for you.:love: xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Dot,

I am really sorry that you have to go through all this indecision all the time.This thing is bad enough when it is straightforward but all these added must be really wearing..At least they are looking at everything and hopefully will sort things out once and for all.You are having such a hard time,i really feel for you.

Im sending you a big huge hug and tons of good luck for your appt. tomorrow.

:love: Love Rose xxxx

Hi Eileen,

Have you got chemo tomorrow?I was in the chemo unit today and there was a woman there that looked so like you that i was going to ask her but i was called in to see Prof.

I hope you are feeling better ,you ladies are having a raw deal at the moment.sending you a big hug as well.

Love Rose xxx

Hi Rose,

I have my 5th chemo tomorrow but I have it at Bronglaise in Aberystwyth, I am under the Surgeon at Singleton but have always had my chemo at Bronglaise. Don't say there are 2 of me please, my partner would have something to say about that. Ha Ha. I had the district Nurse out today to take bloods and she couldn't get any. 4 attempts later and me running my arm under hot water and bingo. But I phoned the Chemo Nurse tonight to see if they were back and nothing. Anyway she rang back about 6pm to say they were ok, only 2 though so not very high. I was hoping for a weeks grace but I suppose its better to get it over and done with. Just dreading the aching legs and feeling ill..

I am so sad for poor Dot having to go through more worry, but I am sure she will be fine as they must be small if they were not detected earlier. Fingers crossed for her.....

Love to all my Friends xxxxxx Eileen. xxx:love:

Hi Dot, Eileen and Jayne wishing you all good luck for tom.

Dot- how upsetting to hear your news, I hope the consultant can give you more details tom and come up with an action plan for you.

You both sound like you have far more chemo symptoms than me, now my mouth is sorted I've been feeling fine. I wonder if my auto immune disease (which is muscular) stops me getting the aches and pains? The painful mouth has gone and I can taste things (normally I think!) which would imply that I put up with the bad taste last time for nothing!!!!

Looking forward to hearing from you all after your various appointments/treatments tom.

Take care

Love Jackie xxxx

Hi all,

Eileen I hope your day was ok with the chemo.

Unfortunately it was a bad day for me, I don't want to put this here because it isn't what anyone wants to hear, but maybe you will be able to ask lots more questions than I should have.

I have developed a secondary cancer in the lung, it has spread through the lymphs so it is inoperable, it has grown since my last chest xray which was clear six weeks ago. They are holding an investigation as to why I was left so long to have chemo, but are saying they are unrelated. My prognosis isn't good, they are going to carry on treating for next two chemo's if the growth in my lungs has grown then I will be handed over to the lung specialists, well I am going to be anyway.

I don't think I will help you girls on your journey, I wish you all well,

Dot xxxxxxx

Oh Dot,

What horrible news for you.I dont know what to say!! Of course you should put it here that is what we are here for.

I know we are all going through different types but I have been having treatment for secondary in the lymph nodes in neck and chest for nearly 2 years and they are inoperable but can be contained so please dont give up Dot,there are so many treatments out there.

Dont you dare stop coming on here where we can support you,we would all worry ourselves sick if we did not hear from you.and that would be no good for any of us.

All the love in the world to you

Speak soon.

Rose xxxx

Though it sounds terrible , there is ALWAYS HOPE!!! Please remain here, you have ALREADY helped in our journey's and please continue to do so.....you cannot leave use now - we need to know where and what with you, as well as needing your wonderful advice, peaceful and thoughtful words..Don't say you will not be with us on our journey's - you are here today, we all are, TODAY is what matters...Please try (very) hard to remember that...We love and respect you and the courageous battle you are fighting - we all are fighting...We HATE CANCER ....But we LOVE Y-O-U!!! Will be looking for a post tomorrow!! Love & Huggles...Becky

Dear Dot

What S*** news, I'm so sad for you but I still need to hear from you regularly so please don't stop posting on here. I don't think there are many questions to be asked sounds more like time for praying that the chemo does its stuff. Do you have any symptoms from the lungs (feeling short of breath before you expect to, cough)?

I've always know that my cancer is not cureable (if thats a word) and I didn't even get that long from my first chemo so I now try and live life instead of just working! You will find your way through this, slowly at first but then hopefully you will come to terms with it. It must feel like the first time you were told you had ovarian cancer, you dealt with it and were starting to move forward and you will again. Its really not what you've got, or how much or even where it is, its more about dealing with it, going for treatments that will help (and that your happy with) and getting on with life. I figure I can't be dying yet simply because I don't feel like I am, I know how the body acts when the end is in sight and I don't have those symptoms or feel like I think I would feel and you don't sound like you have these symptoms either.

Please let us continue to support you - thats what friends are for (even internet friends!)

Sending you internet hugs

Love Jackie xxxxxxxxxxxxxxxxx

Dot ,

Please don't give up hope what ever you do. There is still hope and you are stronger than you think. Until to are told they can't do anymore then you have to be strong and fight. ( easier said I know ) but please please keep on the site and we all will try to give you as much support as we can. xxxxxxx I know we have not met but I have bonded with you all and think about you every day. I really don't know what to say to you. I will be with you anyway as I say as your always in my thoughts... Love as always Eileen.xxxxxxxxxxxxxxxxxxxxxxxxx