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

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

Wow Ladies'

Lots of messages came through and I enjoyed reading them all. Hi Jayne sounds like your having a bad time but once the bowel is working I am sure things will fall into place, and like Jackie said one day at a time.

Jackie you are team leader ( we have appointed you that title ) so take it with love as you are very good at showing your kindness when you are not well yourself. You made me laugh about the hair thing and everyone touching it. My Daughter hates people coming up to her and touching her bump.

David and myself have been discussing the operation and I said I am not sure if I will go ahead with it as the way Dr *** was talking I would prob ened up with a colostomy bag. Plus he was saying and if its spread to upper pelvis there is no point in doing it. I am still annoyed about not seeing the Scan pic from 29thJune and what is hard is the fact that I have 2 Hospitals involved and they are only discussing me via video link. Also I do ask questions but they never seem to commit to an answer only well we can't really say. The chemo nurse said it will come back if I don't have op so she seemed more truthful than the drs. I have not had a phone call as yet but not expecting anything until I go next Tues for chemo.

Anyway back to chemo side effects like you said not everyone has the same like I have not lost my taste, I do get a bad taste sometimes but it passes. My main things are aching legs and flu symptoms. I also get the tingling and numbness in finger tips and feet.

Chat later ladies' Eileen xxxxxxxxxxxxxxxxxxxxxx :love:

Wow Ladies'

Lots of messages came through and I enjoyed reading them all. Hi Jayne sounds like your having a bad time but once the bowel is working I am sure things will fall into place, and like Jackie said one day at a time.

Jackie you are team leader ( we have appointed you that title ) so take it with love as you are very good at showing your kindness when you are not well yourself. You made me laugh about the hair thing and everyone touching it. My Daughter hates people coming up to her and touching her bump.

David and myself have been discussing the operation and I said I am not sure if I will go ahead with it as the way Dr *** was talking I would prob ened up with a colostomy bag. Plus he was saying and if its spread to upper pelvis there is no point in doing it. I am still annoyed about not seeing the Scan pic from 29thJune and what is hard is the fact that I have 2 Hospitals involved and they are only discussing me via video link. Also I do ask questions but they never seem to commit to an answer only well we can't really say. The chemo nurse said it will come back if I don't have op so she seemed more truthful than the drs. I have not had a phone call as yet but not expecting anything until I go next Tues for chemo.

Anyway back to chemo side effects like you said not everyone has the same like I have not lost my taste, I do get a bad taste sometimes but it passes. My main things are aching legs and flu symptoms. I also get the tingling and numbness in finger tips and feet.

Chat later ladies' Eileen xxxxxxxxxxxxxxxxxxxxxx :love:

Hi Everyone,

Just to let you know that I am going off line. I want to thank you all and wish you lots and lots of luck.

Kathym xxxxxxxxxxxxxx

The VERY same to you, The very same......

Hi kathym

Sorry to hear your going off line we'll miss you. If you do come on line again try and find us.

Will continue to think of you and I wish you the best of luck

Love

Jackie xxx

Hi Dot

Just wishing you the best for tom, believe me the waiting is the worst part and that's nearly over now!

Take care

Jackie xxx

Hello Everyone

Hope all goes well tomorrow Dot. Will be thinking of you.

I too am going to be off line for a while - nothing personal...... It has taken all day but at last the caravan is ready to go and we are off tomorrow to the Yorkshire Dales until the end of August. It is only 1 and half hours from home so will come back on 4th for Chemo and will recuperate in the caravan. We come back home the weekend before my last chemo on 25th August - red letter day.

I will be thinking of you all and hoping you all go on okay. Keep positive, keep smiling (not always easy I know) Will catch up with you all when we are back home.

Love and hugs to you all

xxxxxxxxxxxxxxxxx

Hilary

Hi Hilary

Hope you have a great time.

Keep well

Jackie xxx

Hi Jackie,

Well not many of us left boo hoo. I think Dot your still here with us though. I have got my 5th Chemo on Tuesday if blood count ok, I hope its not as feel I need a break for another week. I am normally praying for it to be up but not this time.

Don't know if I told you that no op now just a scan in August after last Chemo so not sue if glad or not. I know it will come back if it no op but thought of maybe having colostomy bag isn't good.

I don't know why the surgeon has said that as he hasn't even seen the scan so should not have made any judgement on what he may or may not find.

Hope our still ok Jackie and Dot and anyone else I have forgot about. My head is all over he place as the house we are renting is so cold that we have decided when the tenancy runs out in Sept we are moving, so more stress. But the house 3 doors away is owned by a lady who lives in Cardigan and doesn't come down much so she said we can rent it if we want. Its smaller but has double glazing and a wood burner so warm . Fingers crossed again for me please. The views we get are great its all country and the smaller house has even better views.

Have a great weekend ladies will be thinking of you all. xxxxxxxxxxxxxxxxx:love:

Jackie,

The house the woman owns is in Cardiff not Cardigan as thats next door to us just wanted to explain, I don't know what I am talking about these days Ha Ha. I just babble on with myself....xxxxx

Hi Eileen,

Sorry to say it but it will come back regardless of op, still think your better to respond so well to chemo - your aiming to stay free for as long as possible as that means the chemo will work for longer. I think you need to discuss your thoughts/concerns with the oncologist as he will be best placed to advise you (I haven't seen my surgeon since the op!).

As these things go you will probably be fine to have your chemo Tues!

Can't imagine living in a house without double glazing and central heating, how spoilt I've become! Have to say wouldn't relish moving during chemo but I suppose if its not far away it may not be too bad, certainly one way of keeping your mind off the effects of chemo! I need to get the place re-wired, which is a major job. Been putting it off for years as have 2 springer spaniels and felt I needed to be off while it was done. I'm now off but can't face the mess it will cause and the re-decorating that will be needed. Am debating about moving into short term rental while I get somebody in to sort the lot!

Saw the oncologist today, am having scan after 3 chemos, asked why when I can already tell thats its working (no itch, muscles better) answer, cos thats what we do! If it shows no visable cancer will you stop the chemo? NO, so why are you doing it! ah well, got meds for mouth and can feel a little difference already!!! had a good laugh with him, he calls me boss and says he loves to see me coming but I'm sure he dreads it cause I don't let him away with anything lol.

Dot- hope everything went well today. Thinking of you.

Hopefully good weekends all round! Back to the origional three till Jayne comes out of hospital. Hope things are 'moving' for her!

Take care

Jackie xxx

Hi Jackie Eileen and everyone else.

I didn't get chemo for four hours after appt they couldn't get my ctscan from the other hospital. I don't really want to take everyone down as I know I have felt overwhelmed a bit lately, but they said I have suspicious lesions on my liver and lung and there was more but too much to write. My nurse was there and was shocked, she said she couldn't understand it as all my nodes were clear. There's too much to write it here but the nurse is going to speak to my team and I will meet with them on Tuesday. See my screaming ab dabs were right lol. I went ahead with the chemo as they said they will sort out any suspicious cells.

I left my house at 9am and didn't get back until 8.30pm. I have told them I want my treatment done at my original hospital and I had lost faith in the admin at the other, they said there were problems with a secretary or secretaries.

Oddly enough my ovaries and that area are clear lol.

My letter may make some despondent as we all want to hear the successful stories, and I don't want to make anyone worried, but I am very calm and know I will deal with it.

Love to all xxxxxxx