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 all

Thanks for the thoughts must have worked cos so far so good! only 3 attempts to get cannula in (hate needles!). Can't believe how quickly the taste changes kick in, had dinner at 4 on way home and all I could taste was salt (my mate checked and it wasn't!) thats a new one for me, have been using far more salt since my first lot of chemo :mischief:. Anyway can't complain cos thats all so far, no sickness, no reactions and no pains, not even on a 'high' with all the steroids so may actually sleep tonight!

Hope all is well with you guys

Take care

Jackie xxxx

Hi Jackie,

That is great it all went well and very interesting as since I had my first chemo I have a craving for salt. I never used it before but now I have it on everything. Hope you manage to get some sleep tonight and you carry on being fit & well over next few weeks....

I am still on my daybed all day as energy levels are zero but hey ho onwards and upwards ...

Hello Girls hope your all ok :blush: Eileen xxxxxxxxx

Hi Eileen

Agree about the salt, never used much till after the first dose of chemo but still needed it after chemo finished, so was suprised to say the least this time! Do seem to remember that the 6th dose of chemo changed my taste completely, totally threw me cos all the tactics I'd developed didn't work, only things that made it bearable was that normal taste would resume as not due anymore chemo!

Hoping to sleep tonight as don't feel so hyper this time, key time is going to be around 7 days cos if I clot that will be about the time.

Had a thought for you to chat with your onc about, For the whole duration of chemo i am put on 'prophalactic' antibiotics usually septrin (can't spell proper name at this point!), just a small dose taken daily because with the long term steroids and the chemo they are worried about me developing infections due to the double immuno-suppression. Its worked for me so far so may be helpful to you or you may already do this and its still not good enough.

I used to have the odd day when I wasn't sure why I woke in the morning as would fall asleep within an hour of getting up and that went on all day! Apart from the odd ocassion (1 or 2 per session). The rest of the time I would push myself and try and do something even if it was just a stroll around the garden (not a small garden but still only 10-15 mins pottering) I always feel that you need to use energy to produce it. Even when well I'll have the odd day when I just manage to sit around and I never feel good after it! Not suggesting for a minute that your not knackered and totally agree it get worse as the treatments go on but if you can try and do a little several times a day it does help (also look up cancer fatigue for some pointers).

Once treatment starts it can only get better................... eventually :)

Keep smiling (pref laughing cos it produces a feel good hormone same as exercise but laughing is easier!!!!

Jackie xxx

Hi everyone

Eileen hope you feel better soon, sorry you have had such a poorly time with it. Jackie hopefully you will keep well this time, fingers crossed to you both, and everyone else here. Rose I have been reading more sections of this site and I noticed how much hope and encouragement you offer to people on here, I want you to know how much I admire the way you handle all of this xx

I rang about chemo and I have been told 26th to see the professor and 29th for chemo, I was irritated by this as I had been told that they wanted chemo to start 3 weeks after the op and now it would be 8 weeks, I grumped a bit and my husband persuaded me to go out to have a look around the shops (a rare event for me). I did and had a lovely day, the evening I spent chatting with my friends on an online chat programme, all was well and I felt really good, didn't get to bed until 3am and I thought I would sleep well, I woke up at 5am with the screaming heebiejeebies.

All I could think of was that they had told me that the cancer I had was aggressive, that I was clinically clear of cancer and although I didn't have to have the chemo they would like me to as they couldn't operate if it came back. Then my thoughts went wild, the tumours were in both ovaries one had surfaced and adhered itself to the pelvic wall, all I could think of was that any cancer cells could roam free now, my mind was a mess. I created this delay by asking for chemo at a hospital near me. My husband woke up and calmed me down saying he would ring the hospital at a reasonable hour. He did and I got to speak to a chemo nurse, she was lovely and tried to assure me that this was not unusual, I told her the reason I was worried was the now 8 weeks, she suggested I contact the hospital who did my op on Monday and ask them if they were happy with it, which is what I will do.

I have no idea why this suddenly hit me like this, it just isn't like me, I hated that I worried my husband too, sorry but I just needed to rant!!

Love to all, hope you are all doing good xxxxxx

Hi Dot,

I am fuming about that message you sent as why is it that people say oh its going to be ok and its normal to feel like that. I wonder if the boot was on the other foot would they be calm and collective. Do they not realise that having this cancer inside your body takes over every emotion you have. And you are right to be annoyed about it. We all know cancer is a fast growing thing and can spread quickly. I was the same when I was waiting for my chemo to start and I knew I had it from 2nd Feb ( although not diagnosed by oncologist ) and had to wait until mid April for chemo plus I had not had the operation to take it out. I got the same response . Anyway I have had my rant now sorry everyone.:cry:

I hope you get some joy on Monday on the phone.....

Hope Jackie your feeling ok and slept well. Hi to everyone else xxxxxxxxxxxxxxxxx

Aw shucks Dot,thank you.

You all give me such a boost when I read your posts and I must admit my eyes leak sometimes.It is really strange looking back at old posts and how scared everyone is but with all the lovely people here helping you can actually feel the confidence improving as the weeks go on and then the scared people start helping the new ones.There are such a lot of people on here now which is good and bad.

Anyway the sun is shining in Wales today so time for some gardening.

Remember the latest girls,peaches and plums are the new miracle cure and plastic it taboo,everything in glass. If we do this we should all be cured by Christmas !!!(yeah right )

Hope you all have a painfree weekend.

Rose xxx

Hi Dot

Sorry to hear you've had such a bad night, the worst time for all the fears to come out and god do they take over! 8 weeks is a long time but probably not in the life of the cancer. Anytime I've been left with these thoughs I always say it took at least a year if not longer to grow and aggressive or not it won't go nowhere in that 8 weeks length of time. From what you say the operation cleared it all so the chemo is mearly to mop up any stray cells. I had a cm tumour left on the bowel after my op and the 3 doses of chemo got rid of it and pre op it shrank all the tumours a lot so it can easily deal with whatever grows in an 8 weeks period. However, once chemo finishes you will get the same feelings, is it growing again, how quickly, how do I know etc. I have no answer to how to deal with this as its hard to get your head around as the last thing you want is it back but you end up so focused on it coming back it drives you mad! Do phone the hospital and first hand advice its better than worrying.

Eileen so far I have no effects from chemo! Spent 3 hours down lottie, mainly pottering and supervising my 2 friends! not hyper despite even more steroids than last time and managed 6 hours sleep last night! long may it conntinue! Is it Tues you go and see surgeon?

Rose, can't manage the peaches but have loads of plums on a tree, won't be ready for a while get though!

Hope you have a better night Dot

Love to all

Jackie xxx

HI everyone,

thanks for your support, it really helped me!!

Love and hugs to everyone, hope you are all doing well.

The paranoia has passed, I really don't know why I got so freaked, it is so unlike me, maybe letting off steam was exactly what I needed.

My husband took me shopping, then we had a lovely meal, it was lovely to be able to get out and enjoy the sunshine

I finally uploaded a photo of myself.

Oh yes, I live in Surrey, we seem to be spread far and wide.

Love Dot xxxx

Hi Dot,

Lovely to put a face to the name & may I say you look great I know we are all over the place which is amazing that that we have all met and become friends and I hope we remain that for many years to come. Hi Jackie hope your still doing ok and glad you slept well. Let us know what happens Dot with the phone call tomor...... Love to Rose Kathym & anyone else I have missed out .....xxxxxxxxxxxxxxxxxxxx

Hi All

Nice to see you Dot! must admit my photo is pre-illness, now a stone and a half heavier and really curly hair (thou not for much longer!), hope I can avoid further weight gain this time!

Went out walking today so energy still ok. Had forgotten that little and often goes better with food for a few days! Just remembered daily temp, funny they assume you'll remember everything cos they didn't run through anything this time!

Glad your feelings happier Dot but phone anyway, could be right about just needing to release emotions but a phone call won't hurt them.

Take care ladies

Jackie xxx

Hi All

Nice to see you Dot! must admit my photo is pre-illness, now a stone and a half heavier and really curly hair (thou not for much longer!), hope I can avoid further weight gain this time!

Went out walking today so energy still ok. Had forgotten that little and often goes better with food for a few days! Just remembered daily temp, funny they assume you'll remember everything cos they didn't run through anything this time!

Glad your feelings happier Dot but phone anyway, could be right about just needing to release emotions but a phone call won't hurt them.

Take care ladies

Jackie xxx

Hi everyone,

Jackie I am so glad you are doing ok this time, ugh weight gain, yet another not so nice thing with this lol, I keep wondering how I will be, I am imagining I will have every symptom going lol, but I know it has to be done. I hope you continue feeling as good as you are!!

I am definitely going to ring tomorrow as they were so insistent I was having chemo after 3rd week, so I want to know why 8 weeks will be ok lol. On the first ct scan I had a 17cm mass, by the time I had my op I had two tumours which they said were like 6 month foetus, one slightly smaller. I was told as far as they could see it wasn't touching anything else, but when I was reading the letters they sent me one said........ one adnexa was in close proximity to the pelvic wall and another said the adnexa was firmly attached to the pelvic wall, I will query that too. I am wondering how I didn't notice that before. Hopefully I can clear this all up tomorrow, I think I must have been in a daze these last six weeks, so much I didn't pay attention to.

Hi Eileen and Rose, keep strong

Hope everyone else is doing well

Love Dot

Hi Dot, Hope the phone call went as you expected. Let us all know what they said....Kathym are you ok as not read anything from you or maybe I have ( brain cells again ) I am feeling better but took 2 weeks to recover this time not sure if chemo still going ahead next week will know tomor, can't wait for it to come as my Daughter is due her Baby in 3 weeks and would love to get up to Manchester to see her.. Take Care Ladie's xxxxxxxxxxxxxx

Back again, hope you are all doing great!!!

Spoke to the nurse and mentioned my concerns, about the long wait for chemo, she told me there had been some problems arranging an appointment for me at the hospital requested (hmm I had the kidney and ct scan there) but she has spoken to the Professor I saw at my designated hospital and they have offered to start Friday 23rd there and the rest of the chemo at the hospital near me.

I said all I need is the assurance that the cancer hasn't spread and I will willingly wait the ten days, she said unfortunatly they couldn't give me any assurances on that, so I have opted for Friday, this does not fill me with confidence!! I will be seen a week earlier I just hope everything will be fine.

I am trying to stay positive, but the gremlins are back again

Love to all xxxxxxxxx

Eileen your post came through just after I posted mine.

I am sorry it took longer for you to recover and my fingers are crossed that yours can go full steam ahead.

My head is addled and I can't remember who has written or not, but I do have you all in my thoughts and prayers

Love Dot xxx

Hmmm Dot,

I understand that the gremlins are back but stay postive like you have been. Once the chemo starts it will zap anything that gets in its way. I knew from my first cycle that the tumour was shrinking because I wasn't going to the loo all the time and that was after only 2 weeks after. So once you start it everything will be fine. Glad its put forward now for you. Meant to ask you all anyone on Facebook ? Love to all especially you Dot xxxxxxxxxxxxxxxxxxxxxx

Jackie,

I have a question for you, do you know how long I will have to wait before my operation ? I know all you ladies had your ops before the chemo but I am wondering about will the surgeon say tomor I have to wait until the chemo is out of me or does it not work like that. Maybe its you can't have the chemo for so long after the op. If you understand that. I am so excited about going that I am thinking all sorts of things...

Also some things I remembered before to tell you all. After my chemo I got very sore underneath ( if you know what I mean ) So I had salt baths which eased it fantastic, plus I got peppermint cordial in and drank it with hot hot water as I got trapped wind, plus terrible heartburn & indigestion so I have omeprazole, now I have a hiatus hernia so it could be because of that so maybe you won't get that. I am just trying to help you all before things take hold. If there is anything else I can think of I will forward.. Hope your feeling good still.

Love xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx:love:

Hello everyone I have not been online over the past few days. Spent yesterday in bed, washed out and achey after Wednesdays chemo. Still a bit achey today but gradually getting better. Hope you manage to get to Manchester for the birth Eileen something to really look forward to. My grandchildren certainly give me a reason to battle on. Hope everyone else is doing alright and getting the treatment and answers they need.

Love to all in my thoughts as always.

xxxxxx:blush:

Hi Dot,

This will they wont they isnt helping but thankfully you have a definite date.Dont let tomorrows worry spoil todays joy.(we should start a thread of how many cliches we have heard since being diagnosed ).The dreaded waiting again !

Hope you can stay strong

Rose xxxxx

Hi everyone,

thanks to you all, the gremlins are in retreat lol!! Thanks for all your reassurance it really does help.

Hilary, good to hear from you, sorry that it has been rough for you.

Eileen I hope you get the answers to your question and you start moving forward with all of this as soon as possible xx

Rose good to see you too, I am back on focus again, I just got sidetracked for a while.

Hope everyone else is doing ok

Love Dot xxxx

Hi Ladies

Dot I'm sure its better to get treatment started not least because of the worry aboout what its going to feel like, its not bad honest but Eileen's right, indigestion is not good (I to am on Lanzopranol but worked better when I only took it post chemo!), taste in mouth is indecribable and tonge sore (burning), nothing tastes right but the worst is even what I can taste disappears as soon as its swollowed!!! By the same token its a small price to pay to beat the cancer.

Eileen, I had 3 doses of chemo then the operation after either 3 or 4 weeks (can't quite remember) and the chemo was supposed to start again 3 weeks later.

Wish this site allowed the posts to be displayed as you responded so you could see whats been said before! Now going to try and copy it to see if I can get round my pathetic memory!

Love Jackie xxx