hello ladies.

[daisies]

Hi All. Agree that the blog can be a bit hit and miss, and sometimes can't see responses to me. Thanks for all your comments on facial hair - I know it is my vanity, but never had to deal with excess facial hair before and it was new to me. Headaches are really under control now and feel so good, and while I still have some fatigue issues I am doing well. Not sure how much longer I will be on Avastin but if it is working will not complain. Hope you are all doing good as we head into Autumn, which is a time I love.

[poohbah]

Hi Daisies,

glad to hear that you are doing so well now. Why would they take you off avastin if you are doing well on it? I was under the impression that it is the Herseptrin of ovarian cancer? {herseptrin helping thousands of women with breast cancer to live}.

I wish I liked autumn as much as you obviously do. I hate the damp feel and watching the plants and foliage dying off. But, I wont complain cos its great to be here to see it!

Almost 2 years now since I was diagnosed and with 9 more weekly taxols to go I am feeling good. Like you, I do get tired but trying to have 3 good walks a week to keep my strength up.

Yea, this blog can be a bit strange now but, I am getting used to it. Keep well and stay in touch.

[poohbah]

Hi Daisies,

glad to hear that you are doing so well now. Why would they take you off avastin if you are doing well on it? I was under the impression that it is the Herseptrin of ovarian cancer? {herseptrin helping thousands of women with breast cancer to live}.

I wish I liked autumn as much as you obviously do. I hate the damp feel and watching the plants and foliage dying off. But, I wont complain cos its great to be here to see it!

Almost 2 years now since I was diagnosed and with 9 more weekly taxols to go I am feeling good. Like you, I do get tired but trying to have 3 good walks a week to keep my strength up.

Yea, this blog can be a bit strange now but, I am getting used to it. Keep well and stay in touch.

[Hidden in reply to poohbah]

Hi Daisies, just wondering how you are doing now on the Avastin, I had my scan and another new growth but rest is stable. So they are putting me on Avastin with Gemzar for 6 months to get rid of this stupid thing. It seems Avastin does work, they gave me a print out of the drug and it cuts the blood supply to the tumour so hopefully it will work. Got bloods done today to see if marker is up but they are ringing me in next day or two to give me a date for first chemo. Am dreading thoughts of it all over again but if it does what it says on the tin, it will be worth the side effects. Had Gemzar before with carbo.

[poohbah in reply to Hidden]

Hi Suzuki, sorry you have to go back on treatment but if avastin works for you it would be great. It seems that there is no escape from new fiends appearing!

had my scan and although taxol is working on the bit I had, a nodule has appeared on my lung which they are not sure what it is. Abdomen is clear and generally I am good but this lung spot has frightened the life out of me. had terrible trouble with spasms in my stomach last week which are slow to disappear. Even had to get a morphine injection to get some relief. I think I was overeating cos feeling I could!!! just goes to show how comprised our systems are overall.

Oh god, sometimes it is so hard to go on and keep up this fight. I feel weary and scared about whats next. hopefully, tmoro will be better!

Hope you are not too disappointed about starting treatment Suzuki and that you will continue to be strong. Take care.

[Hidden in reply to poohbah]

Hi Poobah, its not easy is it? Well what they had treated in 2010 etc is stable but a new one popped up near the top of my thigh and the lymph nodes are coming up in my tummy gradually. So getting Avastin and Gemzar. Yea I woke up last night several times to find myself crying. I suppose if you are worried your tummy will go into spasm anyway, I know a few years back they gave me tabs for that, maxolon and it did work, it helped the tummy get back into rythm again. Hadnt been eating and constipated etc and it set up a rebound effect that time. The joys of constipation await me. Hospital really caught me they asked me to come in early for some excuse but they knew the result and just wanted me to be out again in time to get bloods done across the way. So they expect the result back today and will give me a date to help me feel lousy again. I know I have been lucky but if its not one thing its another with me and am truely fed up on hospitals especially a particular one. Having said that, the onocology staff and doctors are so kind.

[daisies in reply to Hidden]

Poobah, know that feeling of being fed up with hospitals, doctors, nurses, needles, treatments and side effects. Sort of lost the light at the end of the tunnel for a little while, but I think there is a glimmer appearing again. Smiled when I read about your 'joys of constipation' , can understand it so well. Take it easy on yourself.

[daisies in reply to Hidden]

HI Suzuki. Sorry to hear you are have to go back on treatment. When I think of what the drug, Avastin, does, I worry about what it does to the rest of my body. Nearly at the point where full Chemo would be welcome - at least I would know when to expect the bad/good days. On Avastin for 10 months now and no end in sight. Yes, the tumours are shrinking and the CA marker is down remarkedly, but no respite. Had spoken to my GP about a second opinion, but he feels that it is not the time for me to do this. As I trust him, I will go by what he recommends. My spine is troublesome at present so going for physio and with only 2 sessions I feel so much better. It seems that constant pain is getting me down. Miss the comraderie of some fellow patients who are finished treatment, but must plough on. Please stay strong and have a moan if you feel like it. Heard Christy Kenneally recently and he said 'don't play a role, have your crisis', so taking his advice to heart for past few days.

[kittie in reply to daisies]

Hi Suzuki. Their is nothing I can say to you that hasnt already been said, since I read your post this morning I have had so many thoughts going through my mind and all I can say to you is chin up and get that ugly beast zapped out and dont let him win. Dont worry about crying you have to let your anger out some way.I have done plenty of that. You will be in my thoughts .

[Hidden in reply to kittie]

Hi Kittie, I have had my cry,I have gone a lit a few candles and my boss is more upset than me, she texted me today and said she was very upset, so I ended up consoling her.!!!! I will continue working my 3 day week until my dates are set to start. There is no point is sitting around waiting. I do feel well generally so hoping it wont be too bad. I do know some one who was on Avastin for the summer instead of full blown chemo as she wanted a break and now she is quite ill, But then again her present cancer is not Ovarian and prior to that she had chemo for another cancer, poor lady,. My daughter said look you had treatment before and it worked and you got through it and you will this time so am trying to think along these lines as hard as it is

[Hidden in reply to daisies]

Hi Daisies, I did get the info sheet on Avastin yesterday and also Gemzar. Have to get Avastin through the drip tho I thought some had in it tablet form but I could be wrong. so such a fusion of cocktails does make me wonder how I will cope with it. I have been lucky so far that my blood counts have remained ok during previous treatments so hoping this poor body will do the same again for me. Unfortunately for me originally my surgeon couldnt debulk left side entirely as it was growing on a major blood vessel so it keeps recurring in that area. Didnt get my call from the nurse so she will ring with a date when she has it sorted. I do realise that I have been lucky to have kept on top of it so far. I did ask about the side effects and was told everyone is different, thats their mantra. Hve decided to work until the date, well only do 3 days anyway and then make up my mind what to do long term. Just have to go with the flow and Christy Kenneally is right, there is nothing wrong in having a crisis

[daisies in reply to Hidden]

Hi, Had asked the question about the Avastin has to be given through a drip - I think it is because it has to be direct into veins, and if in tablet form it woul go through digestive system first. Don't worrry about debulking , or lack of it, remember it would be another think to recover from. On a more jovial note - crying is so very cathartic. I think it must release the happy hormones eventually. Thinking of you all and sending love & positivity.

[Hidden in reply to daisies]

Yes feel so much bettter now and its back to the fight again thanks Daisies I have really appreciated the comments since yesterday,

[Hidden]

Hi Poobah and Daisies, glad all is fairly okay with you at the moment. Yes I do find that it could be ages before you see a posting on this new site. They did email me to see what I thought of it and I told them since they changed, it can be impossible to see new blogs but go no response. Today is mild down in Cork. Yes I agree the summer plants are dying off and its time to put in bulbs and pansies and cyclemen to brighten things up a bit. I was very bold on the walking issue but read yesterday on the Irish Mail that walking is good for Ovarian Cancer patients so that in itself gives me encouragement I need. You see my dogs are lazy and dont care if they are walked or not, or that is my excuse haha. Well I dont know what you feel about Majella O Donnell shaving her hair on Late late on Friday night. I dont know if I really want to watch it. I know she is doing it for charity but most of us have lost our hair at some stage and the idea is too close to the bone for me. Having said that, once I was told, I would lose my hair, I decided that I would make the choice the same as Majella ie get rid of it before chemo attacks. It does give you an edge I agree. Next week I have ct scan and following Mon the onocologist so am keeping fingers and toes and everything else crossed I will get just a warning again but being realistic at the same time. I cant go against what he decides. The Cork Choir STSA ie Something to Sing A

[Hidden]

Sorry my post was too long, just wanted to say the Cork Choir for Cancer Patients and Friends and family will meet on Wednesday next 18th at Student Centre, UCC. we have been very fortunate to get this venue and our previous director Antoin is returning. It is a fun choir, you dont have to be a good singer just have enthusiasm. So any one reading this blog and who is in the area, please come along, a warm welcome is given to all

[poohbah in reply to Hidden]

hi Suzuki, best of luck with your scan next week. I, too, have a scan next thurs so hopefully we will get good news. I saw Majella O Donnell on late late last night but, my brother in NY rang just when she was getn head shaved! I was glad because even looking at it in silence brought it all back. This time round on chemo I am using the cold cap so I hav'nt lost my hair. It has really meant a lot to me and is well worth doing.

You will have to leave those dogs at home and walk yourself!!

hope you had a nice break and are fighting fit to face anything now. I just realised today that I have been on chemo since march of this year, almost 7 months and 2 more months to go! Amazing that I havnt lost my sanity. Cant believe that I am just letting it happen - no choice anyway! But, I am quite good and feeling strong.

Take care.

[Hidden in reply to poohbah]

HI Poobah, thanks yes had a good break plenty of long walks, Had Friday off as minding my grandson while his parents went to a two day wedding, he enjoyed himself, took him to a play area in a shopping centre nearby and he loved it. Tried the park yesterday but he was too adventurous for a two and bit year old and my hubby was freaking so both had tantrums so went back to the safer play area in the shopping centre which is handy. I know what you mean about letting it all happen, that is all we can do. In the end I did watch Majella and she seemed sincere and I think it was dealt with sensetivity. But too close to the bone really for us. I have been to the Ovacare days in Cork and found them interesting. Some good speakers this year with sense of being more positive about Ovarian Cancer. Glad you are in good spirits and feeling strong.

[daisies]

Saw a notice about the Cork Choir but as my voice tone has changed so much with treatment/drugs? sometimes I even find it hard to raise my voice high enough to even talk, which is strange for me.

BTW : are any of you going to the ICS conference for Cancer Survivorship in Dublin next weekend, There is a workshop on Sat on Life after a Gynae cancer diagnosis. Hate to say this, but sometimes I get so annoyed with all the funding talk & progress on other cancers and nothing on OC. So I may hear something new. Also hope to get to Ovacare Patient Day in Dublin - body willing anyway. Regards.

[poohbah in reply to daisies]

Hi Daisies, if you like to sing then join the choir no matter how bad your voice! It is so good for the soul. I myself sing in a choir and have directed choirs in my previous life but very happy to just sit back and sing for an hour or two. It takes you out of yourself and you don't think of this stupid old illness for a while.

I have signed up for the ovacare day in November. hopefully I will make it but have chemo the previous day so will have to wait and see how I am.

I see on some English information the the government there are going to look into screening in ovarian cancer. That would definitely be a step forward. I hardly ever heard about OC before I got it myself!

stay well!

[Hidden in reply to daisies]

Hi Daisies, You would be very welcome to come along and join the STSA none of us can sing but our conductor makes sure we enjoy what we are doing. It makes you feel good after so give it some thought. The venture is supported by Arc Hse and to confirm, its wednesday at 730 at student centre at U.C.C with tea and a chat after. This is a change of time and new venue, they are hoping to get out new posters asap.

[kittie]

Didnt hear anything about the ICS conference in Dublin next week but I have signed up for the Ovacare Patient Day in November. You are right there is little or no talk on OC I only really noticed it when I was diagnosed Thank God for this Ovacare site.

[Hidden in reply to kittie]

Yes I agree, I only picked up on bits in Woman and Womans weekly. I do feel that you learn stuff at the Ovacare Patient days and def in March the speakers here were more positive re drugs to contain it and I came away feeling better about the whole thing. I know I have had a break from treatment for some time but have been advised to have treatment again in next year or less now to keep it under wraps like high bloo d pressure so dont know what will be the outcome of my scan next week. but at this stage what will be will be, I cant control medical decisions so have to go with the flow