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

Hello Eileen and all

As you say I am buzzing today and probably rather pink and buzzing tomorrow. Saturday I will start to feel fluey and Sunday bed. Regular Paracetamol for the aches and pains then gradually build up again ready for No 5 in 3 weeks. It was a long day yesterday 10 til 10 but I had a really good sleep last night for once.

I'm not brave really but I do think what is the use of worrying I cannot do anything about it, it is there so I have to get on with it. I get an awful lot of support from the girls in our support group, I started going to church again midweek in January. I used to be a treasurer there for over 20 years and stopped going 16 years ago because of all the hypocrisy at that time and once you stop you get out of the habit. It was just like going home when I returned in January without exception they were genuinely pleased to see me back and I have been every Wednesday (Hospitals permitting) since. I get so much support from them too and I do think that all the support you can get helps to give a very positive outlook. I have received 60+ cards since my operation in March and they are still up in the lounge to remind me of all the positivity out there. This all does give me enormous strength to cope with each day which as you say one day at a time. I also go to the local hospice for supportive day care and have a one to one with a nurse for an hour to talk over any fears etc and it does open the door to other things like a hairdresser who has trimmed my wig and will cut my hair when it starts to come back, stress management, psycological help, any number of ways to make the cancer journey more bearable. I would say to all of you to go to your local hospice and see what they have to offer. The hardest thing is going for the first time because hospices have always been regarded as a place you go to to die. NOT SO they are so much more. Your GP or Macmillan contact can refer.

I am having reflexology this afternoon at home. Another benefit of the support group which pays for a number of alternative therapies per year.

I must post a piccy WHEN I rediscover how my webcam works. Not brilliant with technology but at least I have one up on my hubby who is completely useless when it comes to videos, dvd, connecting to tele etc. and computers just leave him cold...Ah........Still it means I can hog the computer no competition.

Sorry I seem to have rambled on today must be the steroids.

Hope everyones treatment has gone okay. Thinking of you all.

Nearly forgot - what a good idea to meet up sometime. I do think the chemo affects the brain cells I keep going to the wrong cupboard for things or is that my age?

Love and prayers

Hilary

Message was edited by: Hilary

Hi REDLIZZIE,

I haven't forgotten about replying to your email, I will do so. I have been away for a few days on holiday so have lost a bit of the chat, I will read them all as soon as I can. There are quite a few of us now and I would like to say hello to all the newcomers. I have had my 2nd chemo Tues 13th and all went well (I only have carboplatin because I reacted badly to taxol, but I may have to have it if this doesn't work on it's own.), I am not feeling too bad today just a bit tired. I hope your chemo goes well tomorrow ( 16th )Plaxie.

Best wishes and lots of love to you all.

From Kathym

Hi everyone,

I have just realised that not all posts come to my email, I have reread all posts because I can't remember when everyone's treatment is either and I haven't had chemo, it has to be age lol!!

I want to say hi to Tony and Ashleigh as I didn't realise they were on this forum. I do hope you are both doing well.

Hope everyone is coping ok with their treatment and do you know I have forgotten already what I read lol....so good luck to all those with their treatment. I did remember about yours tomorrow though Jackie, hope all goes well.

I have rang the hospital as I haven't heard back about my tests and still waiting for the chemo, they are going to ring me back once they find out what is going on.

You are all in my thoughts

Love Dot xxxxx

Hi Kathym,

I hope your feeling ok and its not taken its toll with you. I am sorry to hear you can't have the Taxol but if its giving you a bad reaction then maybe they can come up with something else. I have found that each cycle takes longer to recover from. I am still feeling weak and breathless since my last one and for the first time feeling low.. I was trying to explain to a friend that I am sick of not been able to do normal stuff like shopping, because I keep getting infections I have been advised to keep away from people and she said well its not forever and although I know its not its begining to get me down. I had a moan to David while in Hospital about being prodded and poked and injections since Feb and he was shocked ( as I was ) to think doom and gloom as its just not me.. But because its taking longer to recover from the chemo. Anyway enough said.

Good luck to our team leader ( JACKIE ) for tomor and we will all be sat in the room with you and keeping you awake.....

Love to all ladies. xxxxxxxxxxxxxxxxxxxxxxxxxx:blush:

Hi Eileen,

Sorry you are feeling down.It is understandable but miserable for you.My nurse told me "you are allowed to feel moody or feel sorry for yourself for 2 days out of the 3 week cycle i was on. Then kick yourself up the butt and pin a smile on "I tried to follow her advice although it wasnt always easy.You cant possibly feel perky all the time that you are being poisoned so appologise to everyone beforehand and wallow for a while.There are miserable people out there who arent having chemo !!! You are allowed to grieve for how things have changed.

Have a look on the Jokes site that im abloke set up.Made me giggle.

One day at a time

Rose xxxxxxxxxxxxxxxxxxxxxx (extra for you)

:) Thanks Rose , your a tonic . I feel better all ready. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Ladies

Thanks for all the kind thoughts will have plenty time for replies after tom! Had forgotten about the hyper that comes with the steroids, mine was very bad as I take steroids anyway so ended up sleeping for about an hour a night for the first 3 days!!!

I've had a really busy but enjoyable 2 weeks so am a tad shattered! Looking forward to the chemo as hopefully will lose the itchy skin and the power in my muscles should improve.

Sorry about the hospital stay Eileen you must be really bored with it happening each time. Everybody is going to get down at times its only natural but it can be destructive if left unchecked so we get plenty practice keeping the timings short!!!!

Good luck for when the results come though Dot, hopefully you'll get a date for your chemo soon.

Jayne, Rose and all the others I will catch up with you soon, think I may need to print the thread out to get my poor brain around it :shocked: . Meeting up soon a great Idea though I'm not sure where everyone is from - me I'm about 20 miles from Norwich in Norfolk. I have a feeling somebody is from Wales so could make for some interesting arrangements

Keep fighting the good battle.

Love and best wishes

Jackie XXX

Hi Ladies

Thanks for all the kind thoughts will have plenty time for replies after tom! Had forgotten about the hyper that comes with the steroids, mine was very bad as I take steroids anyway so ended up sleeping for about an hour a night for the first 3 days!!!

I've had a really busy but enjoyable 2 weeks so am a tad shattered! Looking forward to the chemo as hopefully will lose the itchy skin and the power in my muscles should improve.

Sorry about the hospital stay Eileen you must be really bored with it happening each time. Everybody is going to get down at times its only natural but it can be destructive if left unchecked so we get plenty practice keeping the timings short!!!!

Good luck for when the results come though Dot, hopefully you'll get a date for your chemo soon.

Jayne, Rose and all the others I will catch up with you soon, think I may need to print the thread out to get my poor brain around it :shocked: . Meeting up soon a great Idea though I'm not sure where everyone is from - me I'm about 20 miles from Norwich in Norfolk. I have a feeling somebody is from Wales so could make for some interesting arrangements

Keep fighting the good battle.

Love and best wishes

Jackie XXX

Hello Jackie

Hope I'm not too late to wish you well for your treatment tomorrow. I'm a bit of a night owl.

I come from Pendlebury near Manchester so we are spread out a bit but I am sure we can overcome this to meet up.

Wish everyone else well

Hilary xxxxxxxxxxxxxxxxxxxxxxxx:)

Hi everyone,

I am from Manchester but moved to Pembrokeshire in April just as I was having all my scans and they eventually transfered my notes down here. Best move I made in my life....

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