Hello ladies I have only just found this chat page and having read the posts can really identify with you all.

My first experience of Cancer was way back in 2001 when I was diagnosed with stage 2C Ovarian. I had a full hysterectomy, removal both ovaries and omentum. I then underwent 6 3 weekly chemotherapy sessions of taxol and carboplatin. It was hard at first when the 3 weekly appointments went to 6 then 12weeks then 6months then yearly. It did get easier as time went on and I knew it was only a phone call away if I had any problems.

I have had a full and active life since until the bombshell in November last when having a few problems going to the loo bowelwise I mentioned it at my yearly checkup. Scan followed confirming a tumour in pelvic area followed by exploratory op in Feb which showed I would need a colostomy. March 10th came and I underwent the op. No colostomy as the tumour was attached to the bowel and bladder and there were signs in the peritineum. It was decided after much discussion whilst I was on the table to repair a hernia which I had developed, take the top off the tumour and drain. I have made a good recovery from the op and am due to have my 4th chemo on 14th July - taxol and carbo again. I have also opted to go on a trial for a new drug so am monitored a little bit more with more frequent follow ups and scans in the next 18 months.

I'm trying to remain positive and it sounds as though you all are.

Keep well, keep smiling

Hilary

Dear Hilary,

What a brave lady you are xxxx

You sound so as a matter of fact about this whole thing. I hope your Chemo went ok yesterday, and I suppose your full of steroids now so will be buzzing about for a few days. Hello to my other firends, we should think of a name for ourselves. I like you Jackie can't remember who is having what this week. I think you are having the chemo again and not sure if Dot or Kathym are as well. Sorry but I think your brain cells are effected by all this as I can't remember anything.... Anyway good luck to all of you who are having the treatment this week. We should all make a date to meet somewhere when we have finished our treatment and have a good laugh. I am sure we would be thrown out of a place if we got together, but its something to aim for..... Take Care my Friends.... Eileen.xxxxxxxx

Poor Eileen, going through all that and they can't get there act together, what is it about reading the report and not seeing the scan................ same happened to me I had a planned op date, then they looked at the scan during the MDT and found far more than had been reported, the secretary phoned and said op cancelled but didn't know anymore. I survived about an hour before phoning back and insisting on speaking to the consultant (no way could I have coped all weekend as the only reason I could think of was that it was inoperable). That was when he decided to do the 3 doses of chemo pre-op. When is he getting back to you? Assume he found nothing on the internals and that is forming the basis of his decision.

Glad things are improving Hilary, I don't seem to get the aching you poor ladies complain of (thankfully) but nor does my taste improve much (least not that I can remember!). Very tired today, keep droping off like a very very old lady lol. Taste getting worse if thats possible! Hopefully things will start getting back to normal from tom, feet still warm so ain't clotted off yet, fingers are not too tightly crossed!

Would be nice to hear from Jayne, been 7 days since the laproscopy so would have hoped she'd be home by now.

Kathym How you doing post chemo?

Dot hope your well, take advantage of being able to taste things! Roll on Friday so you can get started then we'll all be finished before we know it

Take care

Jackie xxx

Hi Eileen,

I am sorry it was a wasted journey, it is so frustrating after building up your hopes and letting you down like that. Sorry you are playing the waiting game it drives me to distraction. I agree about not operating if it is gone, why go through all of that but you must be left wondering why Manchester didn't inform you about the nodules found in the pelvis. Did they say that Manchester was aware of the nodules, because as I said in an earlier post my first diagnosis was a 17cm mass. At the meeting they said they didn't know what they would find until they operated and examined the mass, but while I was on the ward waiting for the op they told me there were two, I was totally shocked, outcome was two ovarian cysts.

I hope you are more informed tomorrow after the meeting, I will keep you in my thoughts and prayers.

Oh no, I feel for you about the IBS unless someone suffers from it they can't possibly understand how debilitating it is!! I too had internal and rectum, over the months, I had so many I became accustomed to them lol.

I was wondering whether there would be a problem taking loperamide with the chemo, so I did a search and some people are treated with it if chemo upsets their tums, but I will ask before I use it.

I will be thinking of you tomorrow

Hope everyone else is doing ok, love to all

Dot xxxxxxxxxxxxxxx

Jackie,

No he said he was very pleased to at the outcome of internals as he couldn't find anything. I am not sure now if he say's yes to op if I will go ahead with it. Its a hard decision to make for me as I feel that they are not telling me everything or it could be paranoia setting in. Manchester said it was only in ovarie so unless they had grown since Feb. Anyway I wont hold my breath for a phone call. I am hoping my white cell count is low next week so I don't have to have the chemo.

Love to all again Eileen. xxxx :love:

Hi Jackie,

I am well thank you, I really don't want to think about what side effects I will get, but my mind has been through them all, but as you say it is a small price to pay to get rid of this disease. Hope you are still feeling reasonably good, if there ever a good with chemo?

Eileen, I feel for you, it is the uncertainty of it all that makes us paranoid. If he does decide you need op, make sure you ask all the questions that are worrying you before you make your decision. I just want to give you a big hug, I am keeping you in my prayers and thoughts.

Love to all

Dot xxxxx

Hi Eileen and Dot

Eileen you need to think up some questions, I would have confidence in whats suggested from the meeting tom as all relevant parties discuss the results and the best way to go. But you still need to be ready with questions to put your mind at ease i.e. if you don't have hysterectomy is it more likiely to come back there or is it better not to have hysterectomy unless it comes back there. Just keep in mind how 'lucky' you are for your tumour to be so sensitive to the chemo I still feel this is what will stand you in the best staid for the future.

Dot, course there's good with chemo! But it does take some adjusting to and we are all so different. I know I felt I had to complain about my taste last time or otherewise I wouldn't have had anything to complain about lol.

Try not to worry it'll all come right in the end

Love Jackie xxxx

Oh what a waste of time and a horrible wet day to boot.Why cant they all get their stories sorted beforehand.Hope you dont have to wait too long before you have some news.

Rose xx

Jackie,

you know you really are the leader of the pack lol, I find that your words always make more sense than mine, you always manage to keep my thoughts where they should be. (just thoughts) lol

I do find that I have become very concerned and care about you all in the short time I have been in this group.

Hiya Rose hope it's been a good day for you

Hugs to all

Dot xxx

Hi Dot

believe me I'm no leader! We are as we are, and its the differences in us all, that manage to combine to help each other when we need it. Phew not sure that makes sense!

I took to the forum initially to try and help, I didn't think I needed to sound off as I'm lucky enough to have a close group of friends with different tolerances! However, chatting on here gives me something extra, almost unguarded and the understanding of all being in the same boat is invaluable. Unfortunately for you guys and my friends I don't do down, maybe it will come but it hasn't yet! Unlike you guys a couple of my friends keep trying to probe 'how I'm really feeling/coping' its taken the last year for them to realise that I'm always honest with them and what they see is what they get, lol. That was hard work as I'm not good on the touchy, feeling sympathy things!

One of the hardest things I found with having cancer was that I seemed to become everybodys 'property'. I work with a large team (approx 30 nurses) and suddenly they all felt the need to get touchy, feeley diff not my style, which they all knew and said tough they needed it! Then when the hair grew back it was soft and curly, like a babies and all and sundry felt the need to pat my head and have a feel! Not hard as I'm only just 5 foot lol. To my suprise I managed to tolerate it :grin:

This group is, for me, one of the best things that has come out of having cancer. I feel I sort of know you all and am almost more interested in whats happening to you all than whats happening to me!

Hopefully there's strength in numbers and we'll all do well and meet up someday.

Keep smiling

Jackie xxx

Jackie, you explained that really well, people can not belive that when you say to them... yes i feel fine, even better i feel great.... they look at you very suspiciously and still say, do you, do you really!!!!

Because after feeling so ill.... when you start to feel a bit better even, you appriciate that and feel gratefull for that .xxx

Debbie.x

Hi Jackie and everyone,

Did your chemo run smoothly on the 16th Jackie? How many have you had now? I am not too bad post chemo thank you, I felt really tired and had a bad bout of constipation.( but not as bad as yours Jayne, I want to say hello and send you my best wishes, the problem you have must be terrible). I had to stay in hospital over night to get it sorted. I came home last night. Like you Jackie I am a nurse, but stopped working in 2003 when my husband died. I have a wonderful partner now called Andy. I am not sure being a nurse helps or hinders. What do you think, Jackie?

When does the taste problem kick in? Mine seems to be ok at the minute. I also haven't got the aching problem, although I have only had two chemo treatments and also I am only on carboplatin.

Do any of you ladies have fluid on your lungs?, I have a small amount in my right lung making me feel breathless at times.

I am keeping my fingers crossed Jackie that your clotting problem doesn't come back.

Hi Eileen sorry you have had problems too.

I am still trying to read everyone's posts and will make a big effort to do so.

Regards to everyone,

Kathym

Hi Jackie and everyone,

Did your chemo run smoothly on the 16th Jackie? How many have you had now? I am not too bad post chemo thank you, I felt really tired and had a bad bout of constipation.( but not as bad as yours Jayne, I want to say hello and send you my best wishes, the problem you have must be terrible). I had to stay in hospital over night to get it sorted. I came home last night. Like you Jackie I am a nurse, but stopped working in 2003 when my husband died. I have a wonderful partner now called Andy. I am not sure being a nurse helps or hinders. What do you think, Jackie?

When does the taste problem kick in? Mine seems to be ok at the minute. I also haven't got the aching problem, although I have only had two chemo treatments and also I am only on carboplatin.

Do any of you ladies have fluid on your lungs?, I have a small amount in my right lung making me feel breathless at times.

I am keeping my fingers crossed Jackie that your clotting problem doesn't come back.

Hi Eileen sorry you have had problems too.

I am still trying to read everyone's posts and will make a big effort to do so.

Regards to everyone,

Kathym