Hi ladies

I just want to wish you all a Happy and as Healthy a New Year as possible - bring on 2012.

Its good to drop in and see what others are up to - scan and more treatment (fingers crossed!) in January for me.

Best wishes

Sue x

Hello everybody, may I join you and introduce myself?  I opened a new thread on this subject the other day in the "introduce yourself" section, but I really wanted to get onto this site.  I  am 67 yo and live in Essex, UK and have recently been diagnosed as having tumours on both ovaries, plus some areas on the omentum and outer bowel.  However, my hospital MDT  wants to ascertain whether my ovaries are the primary site or secondary to breast ca I had 15 years ago before planning my treatment, so I've just had a biopsy and await results on 22nd Feb.  I found your site about a month ago and was both heartened by all your posts, and at the same time scared - not of the treatment particularly but the outcome.  Some days I feel that I won't get through this, other days I think "No, you won't get me, you (expletive deleted!)"

The last post on your site was 28th Dec, I have been checking, so I hope you are all getting along OK

Best wishes, Hazel. X

Hi Hazel,

I got sidetracked while putting my pic up lol.

I had long hair when I first had my chemo, I decided to have it cropped back before it started to fall into my food lol, I wasn't satisfied with that so I took the scissors and slid it across my scalp to get rid of the rest, I didn't make a very good job of it so when my daughter came over I got her to razor the rest off, I did get follicilitis which was rather uncomfortable, having a velcro head was distracting to say the least hahaha.

My hair was blonde but now it is just grey.........at my age it is to be expected but I am still miffed as I was always saying how lucky I was not having many grey hairs lol.

I will be posting tomorrow when I get back from the hospital.

Hi to everyone..........stay strong (I know it is hard)

Dot xxx

Hi everyone,

Just a quickie as still feeling bad. I should be getting my steroids out of  my system today as took last ones yest. I was awake all night feeling sick and heartburn ( hiatus hernia ) it always gets it. I am telling myself to be strong and positive and only 5 more to go.. I am also taking the chemo tablet everyday as well. Back in clinic Thursday for bloods and to see Dr then overnight stay Friday for chemo again. It is going to be tough but I am trying ????

Dot you look great for your age, and you and Hazel are so young at heart. I love you both you know as you are very similar. John and Mary ? Well what can I say what a beautiful looking couple you are. It is funny how you imagine people look and I thought you were older so got a shock seeing your picture. Mary is a very attractive lady and now I know what she looks like it's easier to get the whole picture when your talking about her...

I have my chemo brain so have forgot who is going where and when ? I think it's you Dot tomor so if it is good luck and we are with you...xxx Hazel I think you are there this week but not sure. I apologise if I am wrong. Sharon hope your good , Jackie my mentor let us know when you get word on what's happening.

Love you all Eileen. xxxxx

Ps John I agree about what you said at the hospital and the kindness we all share, the smiles and yes the tickets we give to others for the car. I call it gods waiting room as we are all just waiting for our name to be called and hopefully take us somewhere pain free. xxxx

Hazel,

Just read back and I see you are at hospital today. I hope everything has gone ok and you have your date for chemo.. xxxxxxx

Dear Dot,

Well, I reckon a velcro head could be quite handy for keeping wigs or scarves in place - bit drastic though!  I must remember not to shave mine off, just use clippers!

Mostly I want to say good luck for your blood results tomorrow - please, please, please God they'll be OK.

Love Hazel xxx

Hi Dot and Eileen,

Thank you for your nice comments on our photo, we had a really good time on NYE.

Hazel, I hope all went well for you today, let us know how it went.

Question: Have any of you heard of, or had an abdominal tap procedure? It is used to drain excess fluid from the abdomen which causes bloating and discomfort. Mary is getting quite bloated and I was just searching the net to see if I could find anything, and sure enough I found some info here on the cancer research site. I may ask our onc team if it is appropriate for Mary to have this. I would be interested to know what your thoughts or experiences are of this, here is the link:

http://cancerhelp.cancerresearchuk.org/type/ovarian-cancer/diagnosis/further-tests-for-ovarian-cancer#fluid

The last paragraph is about abdominal tap.

Best wishes,

John

Eileen,

Oh you poor thing - every weekend!  Hardly time to get your breath back in between!  I sincerely hope the next one isn't as traumatic, I think I'd feel like giving up -  but then I always swore I'd never have chemo again but when it comes to the crunch I'm a coward and want to stay alive for as long as poss!

Yes, I went for pre-assessment today and got told again everything my oncologist had already told me plus some (and acquired more paperwork saying the same thing as well)  but at least I got a few queries sorted and had blood done, so wasn't a wasted journey.  My chemo starts on Thursday morning, and will I be glad to get going at last!

Lots of love 'cos you feel so rotten!

Hazel xxx

Thanks John, today wasn't too bad, I've gone into more detail in my post to Eileen.

I was due to have an abdo drain last month in prep for a biopsy - CT scan showed fluid obstructing biopsy site.  I was admitted for 3 days - NBM first day for afternoon op. to insert drain, but in the event the doc couldn't find any fluid when he did the ultrasound (he was rather cross as everything was ready to go ahead, had a look at CT himself and said even that showed no fluid, so don't know what radiologist was looking at - makes you wonder, doesn't it?) so was wheeled back to ward to await biopsy couple of days later (more NBM!)

I looked it up beforehand online as well, and found a site with a video of the drain procedure, but can't remember where it was, I'm afraid. As far as I could tell, it was much the same as the biopsy procedure, i.e. swab area with iodine, several anaesthetic injections around proposed entry site, which was the worst bit but bearable, then a small incision to insert the drain.  It's done in conjunction with ultrasound or CT so the doc can judge where the drain is going.  I'm sure there are other ladies who have actually had it done, and Jackie will probably have better info, I expect.

Do bear in mind though that it may not be fluid - I get very bloated but mine is mostly from wind (and other unmentionable stuff) caught up in my partially obstructed bowel - but of course it's worth discussing with Mary's team as you say.

Love to you both, take care,

Hazel xxx

Hazel,

It must seem strange to some to be looking forward to chemo, but I know what you mean. I guess we need to feel that something positive is being done to help.

Thanks for your help re abdo tap, and of course you are right, it may not be fluid. It's easy to misdiagnose using the net, but from your experiences and ours, some of the doctors seem to be getting things wrong too! When Mary was in hospital in Jan with a serious kidney infection, one of the docs told her not to worry, it has nothing to do with the ovarian cancer. How wrong did he turn out to be??!!

Mary will be back on Thurs too for 2nd treatment so will be thinking of you.

Good luck,

John

Thanks, John.

It goes without saying that I shall be thinking of Mary and you on Thursday as well.

Love to you both, Hazel xxx

Hi Jackie, hope you are OK. 

Have you started your new chemo yet, I think you said it was this week?

It all seems to be happening for everyone this week, I may be losing track a bit (and I can't even blame it on a "chemo" head).

Anyway, good luck if you've not started yet, and love to you and everybody.

Hazel xxx

Hi Jackie, hope you are OK. 

Have you started your new chemo yet, I think you said it was this week?

It all seems to be happening for everyone this week, I may be losing track a bit (and I can't even blame it on a "chemo" head).

Anyway, good luck if you've not started yet, and love to you and everybody.

Hazel xxx

Hi everyone

Sry not posting much but really not feeling good at the mo unusual for me, saw onc Fri and am awaiting chemo this week but as no spaces have to wait for a cancellation, can't come soon enough as plagued with abdo pain. Strangely seems to be brought on by movement! takes ages to wear off but if I remain seated it stays away lol does this sound familiar to anyone else or is it me doing everything backwards as usual lol

John, draining fluid is an option (the procedure has been well explained by Haze) however the problem is that it comes back so they prefer not to unless the symptoms are really bad, the abdo fluid contains a lots of protein and therefore if constantly reforming (cos it has the space to) will deplete the system of fluid and proteins. so it is an option but one they prefer to avoid if possible. I have known someone who had really bad symptoms from the fluid which needed draining and when it became obvious that it was required regularly, they left the drain in and he drained himself! hope that makes sense.

Eileen, doing things the hard way as usual! hope your begining to feel better and am thinking of you.

Haze fingers crossed all goes smoothly for you, the extra appointments are a fafh but that seems to be the way it goes! I'm looking forward to feeling more normal lol i know it will make me feel worse in some ways but at least the abdo pain and the itch will go! my onc was obviously expecting a fight to get me to have chemo (despite me phoning the Fri before and asking for it lol) he kept telling me i really do need it and kept going when I said I know lol.  he now feels pressurised as he said it would sort my skin/itch out and i told him it better or I would sort him out!!! bless him, don't know how he puts up with me! he got told off for laughing as another patient in another room was getting bad news lol he really has the most unfortunate laugh!!!

Hope everyone else remains ok, Dot did you have a routine appointment or am I dreaming or have missed it?

Take care

Love jackie

Thanks, Jackie - I wish you the same.  Sorry you aren't too good at the mo, I  have bad abdo pains too but mine are worse if I sit about for too long so I guess you ARE just being awkward!

It's good to know you still have a sense of humour -  what are you like getting your poor consultant into trouble?!

Love Hazel xxx

Hi

Just wanted to drop in and say hello to everyone again, and welcome to the new ladies, so sorry to hear that most of you, and me, are on the journey once again. Seems strange to be thankful for something (chemo!) that makes us feel so bad as we hope it will all be worth it in the end.

I've had one round of my 3rd cycle of chemo - gem/carbo this time - went for the second lot today but they wouldn't give it as neutraphylls too low. Has that happened to anyone else? They are going to reduce my dose too which I'm not happy about.

SO nice to have people to share this with that do understand.

Best wishes to all

Sue x

Hi Sue

Eileen is the expert on low blood counts! My dose was reduced last time round and it didn't seem to work any less, your body has got to cope with it and if it takes a smaller dose to do that then I suppose its for the better. I got 16 months out of my last lot despite the reduced dose so try not to worry!

Dot, great news!!! no more colds for the next 3 months please lol

Haze, yes I do give him a hard time but its his own fault!!!!

Take care all

Jackie xxx

Hello, Sue,

Thanks for your welcome.

Isn't this site brilliant - you only have to mention a worry and everyone is there trying to reassure you!  I hope Jackie's and John's responses have helped put your mind at rest, and that your treatment is soon under way again, it's so disappointing when things get delayed, I know.

Love, Hazel xxx 

Thanks for the reassurance Jackie. So your dose was reduced too? I know what you mean about your body having to cope with it but I think I'd prefer to soldier on if it was for the greater good, if you know what I mean. I was wondering whether to challenge the doctor about this next week when I go and I quite like the idea of having equal doses over both weeks like Mary does rather than more the first week so I might mention that too.

I dream of getting 16 months - only got 8 months first time, then 6 months so feeling pretty despondent about the whole thing at the moment. Just hope this different chemo works better. Delaying it has really thrown me, and I thought I was coping well - guess we're all nearer to the edge than we realise, or care to admit!

Thanks for the messages of support and love and hugs to you all.

Sue x

Thanks Hazel, hope you are keeping well and battling thru

Hi all

Sue, I think that's the point! there is no point soldering on if it means you have to keep delaying each treatment, which is worse: a) chemo reduces bloods and you have to delay treatment or b) chemo reduced and you get treatment on regular basis? don't know the answer but my reduced dose worked well for me and I think I'm starting at the reduced dose again this time. Ask you onc along with your question regarding spreading the dose more frequently. Know what you mean about it not keeping you going, I only got 6-8months the first time so was delighted when I went 14 months this time (however have been symptomatic for 12 months lol), think I left it a bit late this time as have never been so symptomatic and CA125 up 200 in 6 weeks higher now than at any other time!

Just heard from onc department and have cancellation for tom at 10.30! sorry for the other person but wow do I feel I need it!!!

am worried that I'm expecting to much from this chemo! itch, skin and stomach sorted within a week????? too much to ask???

Hope Eileen is recovering and everyone else is coping!

Take care

Love jackie xxx

Hi everyone and thanks for all the good wishes.

Hi Sue,

Jackie pointed out that Eileen was the one to chat too as she has always had problems with her neutraphylls, she is going through a hard time at the moment, she does seem to struggle with her treatments and I am sure once she is up to it she will respond.

I was put on weekly chemo as I had lots of side effects, I was told it would be better with a lower dosage which would be better for me, but I don't think it is the same thing as you are going through.

I just want to say that I was given a bad prognosis, a year to live as I had an aggressive form of cancer, it spread from ovaries to liver and lungs......yet here I am, proof that things can rapidly change, my CA125 is down to 10 and hopefully it will continue that way. I am always aware that it can come back at any time but force myself to look at the positive side and take things day by day. It is sad for me to watch everyone struggle, this is no easy thing to deal with.

I always worry that I might say the wrong thing and cause distress to someone, it is so hard knowing what to say to everyone going down this difficult road, I just want to say that all of you are in my thoughts and prayers

Love to all Dot xxxxxxxxx

Hi Hazel,

Well I completed my third round of chemo,. Unfortunately I was not feling well 4 days after, but now I feel great.  My next one is Marh 20.  How is everything with you.  Talk to you soon

Love,

Laura