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

Nice one Rose!

Reading my post I need to remember to use the spell checker!!!!!!!!!!

Synopsis:

Eillen - surgeon apppointment tom - hope I got that right Best of luck and will be thinking of you.

Hilary - had chemo 14th July so assume due again 4th Aug

Kathym - had chemo 13th July so assume due again 3rd Aug

Dot - due to start chemo 23rd July

Jayne had surgery 13th July.

Me - Chemo next 6th Aug. Got Onc appoint 23rd July but not sure why!

Hope that helps :)

Eileen, to be honest I've had taste problems since I increased the steroids a month ago, have used Nystatin (yellow stuff) twice and works while I use it but comes straight back when I stop. Have tried various mouthwashes with no luck either though hydrogen peroxide wasn't one of them, so may give that a try until my appoint on Fri when hopefully he can sort me out!

Take care ladies

Jackie xxx

Rose,

That is a great name for a book Ha Ha,,,, If calender girls can do it then so can we......

I am off to see surgeon today so happy but nervous as I hate them pressing my stomach as it feels delicate ( not sure about you ) Anyway this is the day I have waited for so will let you all know what he say's when I come back....

Eileen xxxxxxxxxxxxxxxx:love:

Eileen good luck, hope all goes well with surgeon, fingers crossed for you.

Jackie thanks for typing that out, makes it much better to respond, that way we don't leave anyone out.

Rose you made me titter, we do need a sense of humour with this.

Hilary and Kathy, hopefully you didn't have too many side effects.

My thoughts are with you Jayne, hoping you are feeling stronger after the op.

There now, that should include everyone lol, big hugs to all

Dot xxx Editing this to say your mail came through as I was typing this Eileen, you must be psychic lol,

Good luck Eileen, am thinking of you today and hoping all goes as you wish.

I am tons better today. The aches have gone and my tastebuds are beginning to come back. The only thing is my legs don't seem to belong to me a bit jellified but I can cope with that now the pains gone.

Thanks for the giggle Rose just what we need.

Hope you are improving Jayne and well on the way to being up and about again.

Hope everyone else is okay thinking of you all.

Hilary

xxxxxxxxxxx:love:

Hilary,

glad your feeling better, that aching legs is terrible and no matter what you do it wont go.

I had an uneventful day and wasted really as the Surgeon had not actually seen the CT Scan only the report. So they will bring it up once again at the meeting tomor. I also found out that they had found nodules in my pelvis high up and I hadn't been told in Manchester about it. He is not sure if an operation is going to be needed as if its gone why put me through that and if he operates and takes everything away then I have it somewhere else then why put me through it. So again its a waiting game... Dot I had very bad ibs and waited an hour before going in so you can imagine how I was ( I was thinking of you ) Anyway I ended up ladies with an internal and a rectum internal ( yes Dot you heard right ) Ha Ha... It could only happen to me.

Well I hope everyone is good and you Jackie are still feeling good. I await some messages later.

Love to all Eileen..xxxxxxxx!www.cancerchat.org.uk/.../love.gif!

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

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

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

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