Hi Jackie, I am grateful for the forum, it is nice to be able to talk to someone who is or has experienced what I am dealing with.

I did read through all of your posts that is what prompted me to join.

I suffered with IBS for many years, so when my stomach became distended I thought it was just another bout of IBS, it was only when the pain started that I queried it. The CT scan showed 2 large tumours that had displaced my cervix bowel and bladder. I didn't have to wait long and I was in for my op all very quick, for which I am grateful. One of the tumours did breach the ovary and attached itself to the pelvic wall, I was told they have removed everything and that chemo would sort out any cells that were left behind. They even took my appendix lol. It is nice to be slim again, I looked heavily pregnant, so it isn't all bad ha.

I am healing well, bit sore but I am getting there. Oh, you mentioned about tasting food, that has been one huge problem for me since my op, everything tasted nasty, even water, it has got better over the last week or so and the only thing that bothers me now is tea and coffee, I so loved my cup of tea. Looks like I have to go through it again then.

Losing my hair is bothering me and I started to look at bandana's and wigs to try and get myself used to the idea. I can't imagine myself without hair either and tell myself I am being silly but it doesn't stop me thinking it lol.

It must be awful going through it all over again, my thoughts are with you, you have been through a lot and I admire how you are dealing with it, I only hope I stay as strong.

Best wishes

Dot xxx

Hi Dot,

I am Eileen and one of the 3 ladies that Jackie mentioned, so I thought I would say hello to you xxx I was diagnosed March 10th with ovarian cancer and I have my 4th chemo on Tuesday. I am having all 6 then a full hysterectomy around September. They were originally giving me 3 then operation then another 3 but for some reason they have changed the regime again. I had a CT Scan last Tuesday so will get the results of the size of it this week. ( fingers crossed ) I read that you are not happy about losing your hair, but for me it didn't matter about that, as my friends and Family still love me for who I am and I feel great without the hair. I have lots of different scarves and can match them to whatever I am wearing. I hope you come to tearms with the hair loss and it will grow back as soon as your chemo stops. Anyway I would like to welcome you to our group and express any fears you have to us because we are all in the same boat and its great to be able to talk them all.

Take Care Love Eileen. xx

Hi Eileen,

I know it seems ridiculous worrying about hair when there is so much other stuff going on, I do tell myself off lol. I am sure once I find some nice scarves I will be fine. The hair isn't really my biggest fear, it was a way of introducing myself to the group. I mentioned that I have had IBS for years, which made me more or less housebound, so actually walking out the door for the tests and chemo is a nightmare for me, but I will handle it, just like I did for all the other tests and my hospital stay for the op.

I read about you Jackie and Kathy and admire how you have all coped so very well, it is good to be able to chat with you all, I don't intend to be the whiner of the group lol.

I hope your CT scan results will be good, I will keep my fingers crossed for you too.

I wish you well Eileen xx

Hi Dot,

Dont be daft, your entitled to have a moan as we all do and also know what itsl like with IBS as I have had problems with loo for as long as I can remember. Its a standing joke with friends & family ie: where is Eileen , dont tell me toilet again....It doesn't matter if I take tablets to stop me going, I still go all the time and my biggest fear is to make sure I know were the toilets are..So I understand what its like to have this as well as the cancer. I am hoping things will settle down when the tumour goes. Mine is pressing against the bowel and as you will have read its how I found out about it.

There are some lovely scarves you can get, I go in those hippy type shops, not sure if there are any near you but I get the small ones as they are easier to put on than the big ones. I had a wig given to me from the Hospital but have not bothered with it as to me it looks like a wig and I find with the hot weather the scarves are cooler and easy to rinse through.

Keep smiling and dont be a stranger..... Love Eileen.xxxx

Hi Eileen,

My first thought when I read your mail was ........how wonderful, Eileen totally understands, we share similar symptoms, it isn't wonderful at all but you know what I mean lol.

I thought I was becoming incontinent when mine first began as the tumours displaced my bowel and bladder. Once the tumours were removed the problems stopped.

The CT scan showed a large mass but by the time I went for the op they decided there were two, one from each ovary, odd really because everyone used to call my bump the twins lol I looked very pregnant (at 65 lol) and the tumours were very similar in size, I instantly had a flat tummy afterwards which was great.

I have been treated in London so far which is quite a journey straggling through traffic and absolutely no parking but I can have the chemo at a hospital closer to me which is great.

I haven't looked around for scarves apart from the Internet but I will check out the local stores, you look great in your photo!! Thanks Eileen you really did put a smile on my face today

Love Dot xx

Hi Dot, Thank You for email and I am glad I have cheered you up. I would like to know about the hysterectomy as I have to go through that in Sept. Do you have to stay in Hospital long ? Also is it easy when you get home. I know your not supposed to do anything which I will find hard and I expect all the ladies who have had one will feel the same, having to depend on people to do things for you. Also Jackie, Kathym, also this is for you ladies. xxxxxx

Hi Ladies!

Dot, worry away about the hair its far easier to worry about something you know about than the other, probably more important, things which all seem very abstract. Once the hair is gone you'll be fine 

Eileen, I had my hysterectomy and bits and debulking of tumour on a Thursday, they warned my friends that I would look grey and ill (we're all nurses so aware that major surgery leaves people looking like that!). I got back to the ward at 12ish and my mate wanted to know if I'd been cancelled! I looked and felt fine, the ward orderly obviously didn't realise either as she gave me lunch! being me I ate it and fortunately was fine! I had visitors on and off till 7pm when I got out of bed to a wheelchair and went for a ciggy (naughty I know but ain't going to make any difference now ! :devil:) . Friend came back in a 8 the next morning so I could go out again, managed to wash myself (but I'm used to tubes and things). Had the drain, catheter and epidural out at some point, went home Sat lunchtime. Sister came to look after me, went to the pub for dinner (easier than cooking and figured I had been in a car to get home!). Managed not to lift to much for the first week but decided it was rediculous not being able to make a cup of coffee so ignored that. Was glad when sister went as could just chill and not worry about entertaining (strange as wouldn't normally have worried about it!). Threw off one of my arterial blood clots 3 weeks post op and in all the excitement which followed totally forgot about the restrictions and went back to normal on discharge . Had a few problems with the wound healing not unexpected as on steroids for auto-immune disease. Otherwise not a problem. You will feel tired and that helps to wile away the time without misbehaving.

Everyone is different so you may be in for longer and please remember I am a nurse surrounded by nurses, so getting home early did not mean I was left without supervision and we knew what problems we were looking for (and how to deal with them!). Unlike Dot I got my taste back for a couple of days post surgery and after 3 doses of chemo where everything tasted sweet it was great, didn't last but it got slowly better until the chemo started again.

Hope that helps

Any questions or moans must be given into, if we can't do it here where can we do it?

Take care ladies

Jackie xxx

Hi Jackie,

our experiences were different, I was in hospital for seven days, but was told that it could be seven to ten, that seemed the norm for the hospital I was in. I was in critical care unit for two days then back onto the ward. Tiredness is a huge part of this for me, considering I am usually an insomniac, but I am enjoying it lol.

I loved the description of looking grey as everyone who had the op looked like that for the first day, but perked up after that.

You made me laugh about having a ciggie, I am a smoker, but there was nowhere on the grounds to have one and I haven't had one since but I really would love one lol.

I look back at my op and think of how concerned I was about it and now it is all over. There is no real choice but to get on with these things and looking back it wasn't as bad as I feared, pity I can't take a lesson from that for the chemo, but of course I will deal with it and I will look back on that too as I am my op.........I hope haha.

Eileen, I wrote to your email, I hope you got it

Jackie it is good to air our fears, much better when we share with others

take care all

Dot xxx

Hi REDLIZZIE,

I hope you are feeling ok. I had my op on the 22nd March 2010. I was really nervous about it , worrying mostly about the post op pain. I had a morphine pump and it was fantastic! I didn't feel any pain at all. The only thing that was uncomfortable was when they sat me in a chair the following morning, I managed about ten minutes then got back on my bed but after that was fine. I managed to have a shower and walk round the ward on the third day. On the fourth day I was discharged and went home in the late afternoon.

At home I was careful not to lift anything, (not even the kettle as my information booklet stated!). My partner helped by doing the ironing, vacuming, and shopping for the first two or three weeks. My wound healed perfectly with no problems ( I had a wound from 2 inches above my naval to the top of my pubic area.) I think as long as you take it easy everything will be fine, although you do feel guilty not doing anything. You are aloud to do certain things after a while such as dusting and even vacuming as long as you don't over do it.

When you sent me your phone number it appeared as three x's, I'm not sure what you meant.

I saw the consultant yesterday regarding my alergic reaction to the taxol. He says he is going to try me on just the carboplatin and see how I get on. I have had good results with carboplatin I had on the one occasion, and so he thinks it may work without the taxol.

I want to say hi to Dot, sorry it's a bit late and welcom to our little group. Hello to Plaxie too.:grin:

With regards and best wishes to you all.

Kathym

Hi to all the Ladies, Well I have just got back form my 4th Chemo & I have had some very good news. My Tumour has shrunk from 6cm in April to under 1cm last week. So the dilema now is do they still operate or carry on with last two and then operate or not do it. I know I should be over the moon with the news & Family & friends are dancing for joy, but & you know this Jackie I am still aware that it can still come back.. They are having a MDT meeting tomor and going to decide then and my Dr will phone me. He thinks better to leave it alone and carry on with treatment but its not all up to him.. I would love to hear what my new friends think if it were you ??? Kathym I did put my number but got an email from the cruk team saying you can't give numbers out so if you check my email out from a few day's ago and send me a message I will send it to you..... Anyway girls look forward to your replies.. Love as always Eileen. xxxxxxx