Hi Redlizzie

I to have ovarian cancer diagnosed in Jan 2009. I had 3 lots of chemo, operation, and another 3 lots of chemo.

The main problems I had with the chemo were gross taste in mouth and nothing tasted like it should, neuropathy of fingers and feet, these got worse with each chemo, but taste improved after about 6 weeks, fingers and feet improved but I still have neuropathy in my left foot (and right but only when I walk!). Hair loss - very slow to grow back and now have corkscrew curls! Tiredness but only realised how bad once I returned to work!

Most of the complications I had with chemo have been rare ones but then I only got diagnosed with ovarian cancer due to a rare autoimmune disease! I developed arterial bloods clots (aortic settling in left Femeral artery) just before my 4th dose, had daily blood thining injections but still developed another clot 5 days after the 6th dose! The onchologist/haematologist aren't sure if its cancer or chemo related and they don't seem to have personally come across it before so please don't worry about it!

I would be interested in hearing about plans for followup when you get that far.

Best of luck

Jackie

Jackie,

I am worried about you as I have not heard anything from you and the other Ladies..xxxx

Hi Jackie & Ladies,

I thought I would pop on as not heard from anyone in ages . I hope your still all ok and had a good summer. Dot, Rose, Sharon, John, and all the rest of you lovely ladies are still fighting..   I am afraid my cancer is back again so will find out were next week when I get my scan results. I am feeling ok but my CA125 has gone up quite a lot.

Jackie hope your still in good spirits and I look forward to hearing from you all.

Love Eileen xxxxxxxxxxxxxx

Hi Eileen, Jackie, Rose and all,

I haven't been able to get access to the site in ages, no idea why, but when I saw your email Eileen I thought I would try again.........and it worked.

Sorry Eileen to hear the cancer is back, and Jackie your concerns too, Rose I hope you are doing ok, I know you were struggling last time we spoke.

There is always the thought it may return in the back of our minds, only way to deal with any of this is being positive, very hard when it feels like it is back to square one!!

I have been struggling with excess fluid, (my legs are like tree trunks lol) I have put on weight and a lot of it is fluid which is slowing me down, I have been told it could be because of the removal of the lymph glands or the chemo or many other things lol, but I have to wait it out as it may right itself.

I had ctscan today and will know how things are with me on Tuesday next, obviously because I have different things going on the gremlins crept in, despite that I am still positive and prepared for anything.

I have just looked at the messages on the rest of the forum and found that dear Rose passed, she was the first person who replied to me on here, she was always there to comfort others and never once complained about what she had been through, I am truly sad to have read this, she helped me soooo much and would always make me laugh when I was down..........we have lost a very special person..........I will miss her so much xxxxxxxxxxxxxxx

My thoughts are with you all....

Love Dot xxxxxxxxxxxx

Hi Eileen,

Good to hear from you, although not so good to hear your news. I hope that things work out ok for you and everyone else.

@Dot, I'm so sorry to hear about Rose, that is truly sad news, she made such a great contribution to the forum and I'm sure that many of us will miss her.

This is my first post for a while also. Fortunately, Mary is doing very well at the moment. She had her 50th Birthday party in July which was a great night, but quite overwhelming too. We had a relaxing week in Turkey shortly after, which was lovely. Mary is full of energy and seems to be back to normal, but we are not being complacent about it. We went for her 3 month check up last Thursday, and the consultant was being very positive about her. He said that doctors are like lawyers in these situations, he wants to say that Mary is cured but he cannot really do that as there are too many variables. But I guess that's about as positive as we could hope for. We go back again in another 3 months.

Planning a big family holiday in Orlando next June, our experience with cancer has driven home the fact that life is too short. We're just going to go for it! Mary is still very anxious, she just wants to be told that she's cured, but of course none of us know for sure what lies ahead.We just have to make the most of life while we are feeling well enough to do so.

I sincerely hope that you all beat this thing, and I hope that Mary is actually cured and that this may bring some hope to you all.

All my best wishes,

John

Hi Dot, John and anyone else out there.

How did you get on with your results Dot ? Hope it is good news for you. Your legs sound painful it must be awful for you xxx

I am worried about Jackie now as nothing since June I think. I am sorry you have had been able to get on the site but glad your back with us now. I am still shocked about Rose ( what a lovely lady and very funny )   It is scary when we lose someone and it is a waiting game wondering if it could be me next but sometimes I think why worry as what will be will be and it is out of our hands now. I hope they have a good bar up there with a few bottles of Red wine.

I get my scan results on Thursday so will let you know, I am not expecting good news this time as I keep getting pains in my groin and it's getting worse so I am thinking lymph nodes.... But will wait and see.

John sorry for babbling on a bit, Mary seems to doing ok thank god. And your managing to get away as well which is good. I am moving next Sat as my house is sold so a lot to do but stops  me thinking about you know what.

I hope we hear from Jackie and Sharon and anyone else who is scared of the feeling of being alone so please get in touch ..... We are getting to be small group now and that is not good....

Keep smiling Dot, John & Mary..... Love Eileen xxxxxxxxxxxx

Hi Eileen and anyone else who !knows me! its been a while hope your all doin ok.

i finished my 2nd course of chemo end of june boy did it knock me off my feet!

had a scan early aug everythin seems ok chemo seemed to have done the trick

fingers crossed. hairs starting to grow now so lets hope its back for xmas!.

im really suffering at the moment with my feet and hands tablets work for a while.

really painfull the joys of chemo.best wishes and lots of love to you all.xxxxxx

Hi Eileen, John Sharon and everyone else

I don't get my results until Tuesday Eileen, I like you... am prepared for whatever comes along, I stay positive but I am a realist and this thing we share is unpredictable. I hope your fears are unfounded but know how you are feeling. I have had the all clear for nine months now and instead of becoming more confident that it has gone, the little old gremlins have crept in lol, darn those little creatures hahaha. Please keep us up to date as soon as you find out!! Hopefully you have somewhere nice to move to, what an upheaval for you when you are not feeling too good.

John.. I am glad Mary is doing well, it is a good idea to have a holiday, I grab each day that comes with gusto and positivety (well, most of the time) lol. We have to keep our lives as normal as possible through all of this and from your posts you and Mary are doing just that.

Sharon it's good to see you back on the forum and all is going well for you, I have very mild problems with my hands and feet and feel for you knowing that yours are very painful, I do hope that yours will improve and the pain relief will be more effective.

Chemo does take its toll, I was told the fluid I am carrying could be many things, two of which are the removal of the lymph glands or chemo, it is a very harsh treatment but without it where would we be!!

Jackie is a concern to me too, it is unlike her not to pop on and let us know how she is doing, hopefully we will hear from her soon!!

My thoughts and prayers go out to all of you and anyone else who reads this post

Much love to all xxxxxxxxx

Hi Sharon,

It is great to see you back online, I always think of everyone on a daily basis. Anyway I apologise to everyone but I do think about you all.... I know that chemo is tough but it keeps us alive. I was thinking about the chemo today and it's like when you have a baby you forget the pain afterwards and with me I forgot about the chemo side affects like pains in your legs, feeling faint ect... god something to look forward too. Have you got neuropathy in your hands and feet ?

I hope your hair is back for Christmas as well and we must try and get together all of us very soon.

Take Care Sharon lots of love and hugs ...Eileen xxxxxxxxxxxxxxx

Hi Dot,

Oh so your like me then playing the waiting game ? I am dreading it and wish they would ring us up with the results as it is sitting in that waiting room ( I call it gods waiting room ha ha ) And waiting to hear I am sorry ? or I am pleased ?  I hope everything is good news for you Dot after what you have been through. I have felt great nearly all this year but have had twinges at the bottom of my stomach where the ovaries use to be and now in my groin. I am sick of looking up all the differnt types of cancers there are as I think I have them all  

Still no word from Jackie I am so worried about her as she is the wise owl who helps us all with her wisdom... I do wish she would get in touch..

Anyway Dot my thoughts are with you on Tuesday and although I am not there with you I will be in my head...

Love and hugs to you and John, Mary and everyone. xxxxxxxxxxxxxx

Hi,

Me agin just been looking at old posts and it is 1 year today since we lost Jayne. I hope her family know we still think about her and anyone we knew who lost there battle...

Love to all of you R.I.P XXXXXXXXXXXX

Thanks Eileen for reminding us, Jayne was a lovely person, my thoughts are with her family today and always.

I was still on the forum reading all the posts when your mail came through, I was thinking of everyone on here (not just our little section).... those I have chatted with and those I follow but never post to, people like Dizzie Shents and Tony to name but a few, their blogs are inspiring...they seem to know the exact words to write to comfort and assure many on here, me included.

I have to mention Rose, miss her lots.

Hugs to all Dot xxxxxxxxxxx

Thanks Eileen for reminding us, Jayne was a lovely person, my thoughts are with her family today and always.

I was still on the forum reading all the posts when your mail came through, I was thinking of everyone on here (not just our little section).... those I have chatted with and those I follow but never post to, people like Dizzie Shents and Tony to name but a few, their blogs are inspiring...they seem to know the exact words to write to comfort and assure many on here, me included.

I have to mention Rose, miss her lots.

Hugs to all Dot xxxxxxxxxxx

Hello everyone. Thankyou for thinking about my mum. Im still following all of your post. All of you are being so brave and strong! Keep fighting and stay strong.

Take Care Ben.  (Jaynes son) x

Hi everyone its me and i'm fine! there was no activity on the site for so long I stopped checking as often

Dot and Eileen, sorry to hear your both awaiting news, fingers crossed it will be good if not you've been there and done that so you know you can handel it! both of you have had 8-9 months i think which by my standards is very good lol. Mines back but is growing slowly so as yet the muscles are working (sort of!!!) i have refused chemo to sort the itch and will wait till the muscles go. Have creams, anti-histamines and steroids for the itch and its working well till the weather heats up lol, 25 degrees yesterday and today so needless to say its palying up! My last scan showed tumour but not as big as previous, while the temptation is to go for chemo there is a limit to how much the body can take before the bone marrow can't cope so i have decided that the longer i can leave it the better, i will be a year free of chemo in october!

I was terribly sorry so hear about Rose and can't believe how long it is since we lost Jayne though it probably dosen't seems long to Ben.

Glad to hear Mary's doing well and Eileen you sound like you've got back to normal (something I've never achieved). Dot your legs sound most uncomfortable and I not sure there is much that can be done to help

Judy the neuropathy will wear of in time but it does vary, mine was a numbness/tingling type feeling, felt most odd but it when eventually. Let us know how the hairs doing - mines different again this time - not impressed!

Will keep checking back now we're active again!

Take care all

Lots of love

Jackie

Jackie,

Just stopping by to say how lovely it is to see you back on here. I got the email alert to say a message had been left and was pleasantly surprised to see that it was left by you!

You have been missed dear friend

Much Love

Tony xxxxx

Dot,

Thanks for the lovely words. What would we do without each other ay?

Much Love

Tony xxxx

Jackie,

You have made my day getting in touch.     I am sorry you are still going through all this still and yet you never complain about it.. I really don't know how you carry on. It must be awful having that itch for so long, I suppose you have tried everything to try and stop it.  I can't believe how the time goes as it's a year next month for you with the chemo and Dec for me. I have been doing really well and apart from the pain lower down in groin I feel fine. But when I read what you and the others are going through I am lucky.

Keep coming on to let us know how you are doing as we have all worried about you. I know we all stay off the site for ages but once someone writes we all reply so when we didn't hear from you it was a worry.. I can smile all day now as I know your ok....

Love as always Eileen ....xxxxxxxxxxx

Ben,

Thank you for getting in touch with us that is really nice to know you still care about us all. I hope you and your family are alright.

Love Eileen xx

Jackie thank goodness you posted, we were so worried about you. You really have had a lot to cope with, it seems never ending for you, no respite, I can't begin to imagine how you are feeling with the skin problem and totally understand why you don't want any chemo at the moment.

I agree with you Jackie on the neuropathy bit, they put me on weekly chemo because of the problems with my feet hands and the tinitus (the bells the bells lol), although the tingling is still there it is very mild.

When I read how others are suffering I think why on earth did I mention my tiny niggles, but then I noticed Eileen seems to think her problems are less than everyone else's lol....but I know how much you two have struggled and mine honestly cannot compare. Not trying to compete with who has the least problems hahahhaa............was just a thought.

Eileen you mentioned that you have read up on different cancers and could probably relate to them all, well I don't even read side effects of drugs because I know I will think I have them all, haaaaaaa just trying to stay positive in all of this.

Ben it was lovely that you posted and that you still check in on all of us.

Tony it was nice to see you post here too, it is true...what would we all do without the support we get from this site, I do get very attached to many on here and it is very emotional for me when I see them suffering, and I know that is how we all must feel.

Much love and prayers to you all Dot xxxxxxxxx

Hi Ladies (and gents - Tony & John)

I just popped by to say 'Hi' to you all and wanted to say how lovely it is to see this thread come back to 'active' again....(although I do really wish it was active again with all of you in remission, rather than going through new or continuing struggles & challenges).....

You've all been missed on here - although I don't generally post on your thread I did always read it and kept up to date with how you were all doing...

I noticed tonight that there is a new member who has just been diagnosed with Stage 1 Ovarian cancer, she has started a new thread but I will put up a link to you ladies as I'm sure you will be able to help her.

Dizzie xx

Thanks Dizzy, not surprised the new member couldn't find us - must remember to post more often to keep thread 'active' and reassure everyone we are ok (ish!)

Having lived with this for 21/2 years its hard to know what to post, hi I'm fine sounds to much like tempting fate lol. Dot and Eileen I don't feel I suffer as much as you guys so I guess we can all basically cope with what we have but don't like the sound of what others have lol. The itch is annoying but then I don't feel ill like you would with say a cold, so I tell myself if I don't feel ill I must be ok! and I'm only half way to beating my self imposed 5 year mark - will soon be time to extend it .

Like Eileen I'm about to undergo massive changes, not moving house but having an extension built and total re-organisation and redecoration! not sure which is worse as I still need to pack up a lot of stuff but sure it will be worth it in the end. The extension will include a new bedroom for my friend plus each of us ends up with an ensuite bathroom. Mine will be designed to accommodate a wheelchair just in case and can't wait to have a shower which I can easily use - the legs struggle to get me in and out of the bath and that's when I'm good lol. The old bedroom will be turned into a lounge which will allow me to view the garden instead of the road and gives me a place to put a conservatory! unfortunately that bit means knocking down walls etc which I am not looking forward to, would move out for a while but the dogs won't let me lol. oh nearly forgot having the place re-wired to, which means at some point will lose Internet but hopefully not for long cos that would not be good

Good luck for Tues Dot, daft as it sounds I go into these appointments expecting the very worse, my theory is if it is that bad I'm prepared and if it isn't as bad as that, then its time to celebrate but then my doc told me at the start mine wasn't curable but it was treatable. I know I'm dying but I refuse to do so quickly or quietly but knowing that stops me worrying about it come back cos in reality mine never goes away!

Enough waffling for now

Keep calm till the results ladies (worrying won't change anything!)

Thinking of you all

Jackie XXX

Hi everyone,

I'm so pleased that this thread is active again. Please do not feel that you're complaining or competing, it is very helpful to know what others are feeling and thinking. I know that Mary gets paranoid every time she gets a pain or a twinge somewhere. Unforunately the experiences that we have all been through messes with your head, and even though the oncologists are very happy with Mary at the moment, she is a long way from being convinced that she is ok.

What can I say, Mary deals with it in her own way, she cannot discuss her feelings with fellow sufferers, that's just the way she is. That is why I'm here, I have learned a lot from you all and that has helped me so much to support Mary. So thank you all for that, and long may we continue to support each other, or just come and share our fears and feelings, or let off steam.

I hope too that readers of this thread will also contribute, if only in a small way, because your comment may just help someone a little.

Thanks again,

John