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,

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

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

Hi Eileen,nice to hear from you too im really shocked and saddened to hear about rose what a brave and lovely lady

will be so missed on this forum and my thoughts go out to her family. yeah ive got neuopathy or should i say its got me!

really suffering hands and feet but feet are worse keeping me awake most nights. speak again soon take care

[julygirl58] sharon xxxxx

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

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

Dot,

Just wanted to say good luck for today with you results. We are all with you in that waiting room remember ??????? xxxxxxxxxx

Thanks Eileen,

just about to leave......ugh have to prepare for rush hour traffic lol

Dot xxxxxxxxxxx

Jackie,

You don't know how good it is to have you back on here.

I think I am in a much position having to move again as all that work and mess will be awful ( get to Ireland for a few weeks )  I am dreading it as tomorrow I getting nearly all my furniture moved to my daughters. She is putting it in her conservatory as the cottage I am moving to is a small one bed on 3 floors ( It is so quirky ) and it has lots of built in cupboards so I am only taking my settees, bed, Mexican chest, and boxes oh and my plants from outside. my kitchen is downstairs with a galley kitchen & patio doors opening up to a large patio area with woodland and a stream running at the back . Just what I need....

I like you Jackie always expect to hear the worst news possible as then anything good is a bonus. It's not that I am negative but I think it pays not to be too complacent if you understand that.

Love always Eileen .xxxxxxxxxxx 

Hi everyone.........good news ctscan was completely clear, my lungs, liver and pelvic area, not a trace.............sooooooooooo happy, on my way there I had a lovely feeling that all was good and it wasssss. I have been booked in with the Lymphoedema nurse for fluid build up around my body, I think it consists of massage and those really fashionable compression stockings lol, they said it is a very common complaint.

Eileen I am hoping that you will have some good news, but I am a prime example of being given a bleak prognosis and have come through it........I will still live day by day and be thankful for that.....so no more appointments until Christmas.

Jackie and everyone else I wish you all positive progress.

Much love Dot xxxxxxxxx

Dot Brilliant news,

I am soooooooooo happy for you and yes I was thinking that yesterday about the bad news you had.  Well get yourself a very large glass of wine tonight.

Love always......Eileen xxxxxxxxxxxxxxxxxxxxxxxxxx  xxxxxxxxxxxxxxx

Dot,

I am so happy for you, it is so great for all of us to hear good news.

Thanks and with love.

Tony xxxx

That's great news Dot! really pleased for you.

Yep, a celebratory drink is in order I think.

Take care,

John