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

Hello everyone-I have read all your posts and would like to join in-I have gained a lot of comfort from reading about other people's experiences and you all seem like a really nice group of people.

My name is Anne and I was diagnosed with stage3c ovarian cancer(one ovary and lymph node involved) in January 2012.I had debulking surgery in February2012 and have just had 5th chemotherapy dose-last one due on July4th.I have also got a 2cm cancerous tumour to kidney and am seeing the urology consultant about that this week.I am aged56 and have been married for 26 years and have a son aged 25 and a daughter who is 13 so as you can imagine I have found my diagnosis and prognosis very distressing at times.

I have found chemotherapy quite a struggle (I hate needles as well!)but am focusing on being able to spend quality time with my family once it's over and have booked 2 weeks in Spain at the end of August which I am really looking forward to.My friends and family have been very supportive and I am trying to live as normal a life as possible but sometimes I feel very frightened and lonely .As I have said I have found following similar experiences helpful and would also be more than happy to help other people through what can be very tough times.

Hi Anne,

Welcome to the forum and of course you are most welcome to join in. At the moment it has gone very quiet on this thread and I suspect some of the ladies are having a difficult time right now.

I am glad that reading some of the posts has helped you in some way, it is a difficult thing to come to terms with. Strangely enough though it seems more difficult for our friends and family to come to terms with and they sometimes do not know what to do or say. As for Mary, she has just told everyone to treat her as normal.

Mary stopped her chemo 4 weeks ago so that she would be able to go on our family holiday to Orlando - we leave on Thursday, so I will not be around on the forum either for a couple of weeks. Mary is feeling well at the moment, so hopefully the holiday will do her the world of good. It is important to have things to look forward to, so good for you booking a Spanish holiday.

Mary will have a blood test and CT scan when we return, then we will discuss what happens next. May I ask what chemo you have been on?

Best wishes,

John

x

Hi everyone how all doing i avnt been on here for a while.a big welcome to Anne

therse always someone to have a chat to or a moan! best site ever.well ill fill

you in with whats happening with me i was ment to have chemo again a month

ago then the day before i get a call from hospital to see my consultant change

of plan no chemo im having surgery to remove a lymph node.so im just waiting

tfor that letter to be dropped through my letter box!.even though im very nervous

anyone had this op?.just wont to get over with.

Hi john, Mary glad things are ok with you

have a wonderfull holiday.

Big Hugs to everyone

take care. sharonxxxxxx

Hi John and Sharon and everyone,

John I am on 6 sessions of Carboplatin/Paclitaxel given at three weekly intervals-I was incredibly ill after 1st dose but although I still have severe nausea,fatigue etc it's nothing like the first time-as you can see from the time I am writing this sleep-or lack of it-is a big problem for me and has been since diagnosis.I am sure you and Mary are getting really excited about your holiday-I hope you have a fantastic time and enjoy every second of it-there is nothing better than a complete escape and change of scenery -problems get forgotten for a while.Your travel insurance must have cost a fortune!!I am using EU card in Spain and insurance which doesn't cover cancer due to ridiculous costs.

Sharon I had a lymph node removed during my initial debulking surgery so am not sure about what the operation entails when done separately but do let me know how you get on.

The hardest thing for me is the effect this has had on my daughter -we are very close indeed-and her unhappiness fills me with a terrible sadness.At the moment she is quite involved with preparations for Race for Life which gives her a focus.I am close to my son as well but he is at university so is not at home all the time.

I avoid hospital cancer support groups and try to live as normal a life as possible but it is lovely to feel part of this group where you all seem to be lovely,kind,supportive people.

Love to everyone

Anne X

Hi Anne,

Mary had Carbo/Taxol first time around and responded very well to it - only issue was the Taxol left her with a lot of neuropathy in her toes, so she couldn't have it this time. Instead she had Gem/Carbo, but again she has responded well with very little side effects, she seems to be surprisingly tolerant of chemo fortunately.

Re Travel Insurance, yes it can be very expensive, we were quoted a minimum of £1000 and most companies wouldn't insure at all. Mary's consultant advised her to stop her treatment 3 weeks before travelling and to take out a policy excluding pre-existing conditions. The thing is, it's the chemo rather than the cancer that can make you suddenly acutely ill, so you have to do your own risk analysis. We cannot afford to keep paying thousands of pounds in travel insurance, so we have to make an assessment that she feels well enough to travel. Fortunately, she is feeling very well right now so we feel the risk is very small.

Her consultant also advised her to have her treatment around her life, not her life around her treatment, and he is very flexible with this. So do look forward to your holidays, they are very good for you.

Best wishes,

John

x

Hi Sharon,

Good to see you back, sorry to hear your chemo has been postponed for surgery - always a worry, but I'm sure it'll be fine.

All we can do is follow the advice of our consultants and hope it all works out for the best.

Good luck and best wishes,

John

x

Hi John,

I agree about travel insurance and have decided to take the risk -my consultant has only recently agreed to me booking a holiday and I feel so much happier having something to look forward to-I am someone who always liked holidays and travel a lot before I was ill.

Spent this morning with urology consultant regarding small kidney tumour-have been very stressed about it but fortunately it just needs to be monitored every six months at the moment which is such a relief as I don't think I could take any more bad news at the moment.

Mary's consultant sounds really nice-I have had to point out to mine that my emotional needs were not being considered.Like Mary seems to I try to continue to see friends go out for lunch,shopping etc but am being a bit more cautious at the minute as only one more chemo to go and I do not want to get an infection!I just wish I could sleep more.

Anne x

Hi Anne,

Yes, Mary's consultant is very good, he is the top man at her hospital so she is very fortunate to be under his care. It sounds like Mary has a similar problem as yourself, she also has a small tumour on the kidney which they were trying to shrink with chemo - the CT scan in July will obviously show if there has been any progress.

When we booked this holiday, we thought that Mary was cured. Then she came down with a serious kidney infection at the start of this year and found out later that this was caused by the tumour. I thought we may have to cancel the holiday, but she has made good progress so keeping everything crossed that she'll be fine while we're away. We have lots of attractions booked (including swimming with dolphins!), I just have to make sure she doesn't over do it. Don't get me wrong, I do worry about Mary but she is determined to do the things she really wants to do - the term "life is too short" feels so true for us now.

I do hope you manage to get some sleep, Mary found that taking steroids too late in the day would keep her awake but that was only on chemo days. Perhaps a hot milky drink may help.

John

x

Hi John

Another sleepless night!Like yourselves my husband and I are trying to make the best of things and enjoy the present.This should become easier I hope when chemotherapy ends.I find living with uncertainty very difficult.

My renal tumour is apparently a separate cancer not related to the ovarian cancer.It is within the kidney and shouldn't spread outside the kidney-hence the monitoring at present as it is slow growing-unfortunately cannot be treated by chemotherapy so I may have to look at other options in the future.I am trying to put it out of my mind and focus on the ovarian cancer.The urology consultant was fantastic-very understanding and reassuring.

Hope Mary continues to stay well-it sounds like she will and you both need and deserve what sounds like a fantastic holiday -I do envy you swimming with dolphins!

Did Mary put any weight on during chemotherapy?I am finding that despite the awful nausea my appetite has increased and I do have to be very careful not to go too wild-I normally eat a fairly healthy diet.Is Mary going to swim wearing a wig-I hope you don't think that is a stupid question or that I a m being too personal-it's just that I want to look normal on my holiday and have two identical wigs and was going to keep one on when swimming and wondered what other people did.I wear a wig at all times and a hat in bed !!!

Thank you for listening to my nocturnal ramblings,I am going to have another attempt at sleeping.

Regards

Anne x

Good Morning Anne,

I hope you managed to get some sleep in the end. Please ask anything you like, that's why we're all here I think - to share information and experiences and hopefully help each other along the way.

Mary did not lose her hair this time, it's the Taxol that does that, Gemcitabine is not as aggresive but the consultant said it was too risky to give her any more Taxol because of her neuropathy. However, last year we went to Turkey for a week post-chemo and she had bought online a selection of bandanas to wear.

She does have a wig which she wore a lot at first, but eventually only wore if we were out socialising. Generally she would wear a hat or a bandana when we were out, at home and in the garden she didn't bother covering her head at all in the end. She felt that she was covering up to make others feel more comfortable rather than thinking about her own comfort. It's a big thing psychologically for a woman to get over though and everyone does what feels right for themselves.

Mary did not have any issues with weight gain, her appetite was up and down really. She was very tired last night, we were entertaining over the weekend - friends over till late on Friday then Father's day bbq on Sunday, now I'm worrying that she has overdone it. I probably drive her mad keep asking if she's ok.

I hope your treatment and progress goes well for you.

Take care,

John

x

Good Morning Anne,

I hope you managed to get some sleep in the end. Please ask anything you like, that's why we're all here I think - to share information and experiences and hopefully help each other along the way.

Mary did not lose her hair this time, it's the Taxol that does that, Gemcitabine is not as aggresive but the consultant said it was too risky to give her any more Taxol because of her neuropathy. However, last year we went to Turkey for a week post-chemo and she had bought online a selection of bandanas to wear.

She does have a wig which she wore a lot at first, but eventually only wore if we were out socialising. Generally she would wear a hat or a bandana when we were out, at home and in the garden she didn't bother covering her head at all in the end. She felt that she was covering up to make others feel more comfortable rather than thinking about her own comfort. It's a big thing psychologically for a woman to get over though and everyone does what feels right for themselves.

Mary did not have any issues with weight gain, her appetite was up and down really. She was very tired last night, we were entertaining over the weekend - friends over till late on Friday then Father's day bbq on Sunday, now I'm worrying that she has overdone it. I probably drive her mad keep asking if she's ok.

I hope your treatment and progress goes well for you.

Take care,

John

x

Good morning John,

I got some sleep but not enough so am going to have a very restful day today.I always have more difficulty sleeping for the first week after chemotherapy .

Mary's attitude to hair loss is very admirable and I totally agree with what she says but although I consider myself a strong person and have coped with all this as well as anyone could I am very self conscious about having no hair and think I always will be.Also I like to look as well as I can for my 13 year old daughter.

Even though I get tired I still want to be as active as possible and Mary sounds like she has similar views-like you my husband sometimes says I should rest more but he knows what I am like and recognises my need to carry on as normal -I have become more accepting of my limitations and usually know when to stop.I worry about him getting tired as he has a fairly stressful job and looks after me without ever complaining and all the stress and the effect my illness has on the children certainly has taken its toll.

Anyway I am going to get up now and read and catnap on the sofa-I will also do some pleasant things like sorting out airport transfers etc.Tomorrow I should be feeling a lot better and am going out for lunch with a friend-I seem to have turned into a lady who lunches!

I am counting the days until this chemotherapy ends-I appreciate that some people have a much worse time than me but I find it far from pleasant!

I hope Mary continues to feel well and rests a bit so that she has got enough energy to enjoy her holiday to the full-I have no doubt that she will be very well looked after as ever!

Enjoy your day.

Anne x

Hi Everyone,

It's worrying that there has been no activity on this thread for quite some time, I do hope everyone is ok.

Just checking in to let you know that we had a fabulous holiday in Florida, Mary was absolutely fine and really enjoyed herself. You honestly wouldn't believe there was anything wrong with her at the moment.

She went for a blood test on Monday and will have a CT scan and clinic on Thursday, so we will get an update. I'm sure she will need more treatment, just a matter of what and when.

Best wishes,

John

x

Hi John and everyone,

Glad you and Mary had a wonderful holiday.

It is quite worrying that no one else is using this thread at present-I hope people are ok.

I had my last chemo a week ago -am ok but a bit concerned about infection as I noticed my neutrophils were only 1.2 before I had this last dose and I am going to my son's graduation tomorrow which means a big crowd at a bad time-but I wouldn't miss it for anything!

Does anyone know about when I can start eating seafood,soft cheese ,steak that is pinkish etc again?I am going on holidays in 5 weeks(6 weeks from end of treatment)and don't want to be worrying about what I eat all the time but do love shellfish and seafood!!

I am looking forward to a break from chemotherapy and hospitals but am still feeling very up and down in mood and got very depressed recently over hair loss-eyebrows and eyelashes were the last straw!By the way I am not someone who is normally obsessed with appearance.

I will have my fingers crossed for Mary next week.

Best Wishes

Anne

Hi Anne,

I think being aware of any symptoms and acting quickly is key. When Mary became neutrophenic last year she went downhill very quickly, so first sign of any symptoms (especially rigors - shivering) you should get straight to A&E. Did your hospital give you a chemo patient card to carry? If so, make sure you have this with you so that the hospital know straight away how to treat you, but hopefully you'll be fine.

You should easily be ok for your hoiliday 6 weeks after your last treatment - Mary's consultant recommended stopping her's 3 weeks before we went, but of course this may vary from person to person. She was eating prawns, medium rare steak, cheese etc and had no problems at all.

Sorry to hear that the hair loss is getting you down, it takes time to come to terms with but please don't let it spoil your holiday - you are so looking forward to the break.

John

x

Hi John,

Feel a bit more reassured about the neutrophils now-I think I am more anxious because it is the last one and I am desperate to have some 'normal' time.Iwill feel happier if I get through the next week in one piece.

So pleased to hear I will be able to eat what I like-to be honest it's only fairly recently I discovered I was eating lots of things I wasn't supposed to and I have been ok so far!

I am less depressed now-I think the steroids make me very down in mood.

Was swimming with the dolphins as magical as it sounds?Hope Mary is ok and not feeling too low now she's back-I know I am always apprehensive before scans and clinic.

Thanks again for answering my questions it's so much better from someone who has gone through the same thing than trawling through endless research on the Internet .

Best wishes

Anne x

Hi Anne,

I'm glad you are feeling more re-assured now, it's very easy and understandable to worry about anything and everything, but so important to enjoy life as and when you can, but of course you need to be sensible about things.

Mary is having her scan as I write this, and we will see the consultant this afternoon for the results. I expect she will need more treatment even though she is feeling really good at the moment - apart from being anxious. I will let you know later how it goes.

Yes, the dolphin swim was really good, the whole day was so relaxing although the dolphin interaction was only about 20 minutes. I have added a photo to my profile.

Best wishes,

John

x

edit: Mary saw the prof this afternoon, he was very pleased with her scan results and doesn't want to see her again for 3 months. Perhaps the holiday did her good, it's certainly a relief.

Message was edited by: JohnMillbrook

Hi John,

I agree that it is important to enjoy life as and when you can but sometimes it is difficult to stay strong.This forum and our chats help a lot as I try to keep things as normal as possible at home particularly for my daughter who gets very upset every time I go near a hospital.I have not joined the hospital cancer support group as I prefer to be with friends who knew me before I had cancer and time with my family is more precious than ever.

We had a wonderful day at my son's graduation yesterday and I hope to be there next year when he does his masters but I did feel very sad at the same time because realistically I won't be there for my daughter.I still have days when I wake up and can't believe this is happening to me.

How relieved you and Mary must be that the scan was ok I am really pleased for you both -you will be able to enjoy more breaks and holidays together!I intend having a very busy and enjoyable summer once the school holidays start.

I don't know about you but I find having cancer is very expensive!!I buy my daughter more clothes than ever to cheer her up,I go out for lunch with friends a lot and I am always planning short breaks and holidays!Have you been to Lisbon?I found it a lovely city for a short break and it is apparently the cheapest of the European cities.We can only go on holidays when the schools are off and prices can be extortionate particularly when I can no longer plan and book in advance.

I am going to finish and look at your dolphin picture!I am not brave enough yet to post photographs-I wouldn't like any of my friends to come across it and read all my ramblings!

Have a good weekend and celebrate the beginning of another good three months!

Thank you for listening and for all your good advice

Anne x

Hi Anne,

I'm so glad that you had such a good day at your son's graduation, it's so important to be at those special events, you must be very proud of him. Never give up hope of being there for your daughter, yes we have to be realistic, but there have been some major advances in treatment over recent years so you never know how things will turn out.

I know what you mean about friends finding your ramblings on here, I like to discuss things with people like yourself who are on a similar journey - but prefer to keep relationships with friends and family as normal as possible. That's why I do not use our real names on public forums, although the chances of friends and family stumbling across my posts are pretty unlikely and not really a big deal if they do.

We are already thinking about booking another week away somewhere, probably in September - the weather has been so awful this summer, we just want some more sunshine! We visited Lisbon once when we were on holiday in Estoril about 25 years ago, but it was just for a few hours so we didn't see much of it. Again, I'm apprehensive about booking early incase Mary becomes unwell again, but leaving it to the last minute sometimes means that all the nicest hotels are fully booked, and the flights are more expensive - tricky one! We were thinking about going all-inclusive as we've never tried it before.

Mary is talking about going back to work part time, but as she works at a college they are starting to say that staff cannot take their leave during term time, so as with you, holidays would get a lot more expensive.

Take care,

John

x

Hi John,

Very impressed with Mary wanting to go back to work-she must be feeling quite well.

I am out and about a lot at the moment making up for all those times I didn't feel well enough.

I am beginning to feel less depressed and am trying to enjoy life while I can-I think the steroids had a very bad effect on me.

I have an appointment with my oncologist before my holiday and then it will be three monthly.I still find living with uncertainty very difficult.My last ca-125 was 10 which is good but that doesn't mean it won't creep back up.

Apparently my ca-125 will be monitored every 3 months which is fine but will discuss when treatment would start if it rises as my understanding from reading research is that it is better to wait until symptoms appear which can be several months to a year after increase in ca-125 .Quality of life would be better and this does not affect length of life.Treatment seems to vary in different hospitals so it is sometimes difficult to know if you are making the best choice.

I am enjoying good wine and looking forward to being able to eat all those forbidden foods again-I haven't been ultra neurotic about it just a bit careful I find you always crave what you aren't supposed to have!

Your picture with the dolphins is really lovely- you all look so happy -like my family on a good day!

The recent sunshine has been very welcome-it's lovely just to be able to sit in the garden and I am having a daily walk now,trying to go a little further each day so that I get fit again-I got very fatigued during chemotherapy and consequently didn't get much exercise.I am really looking forward to swimming and hope to do some cycling soon.

I hope Mary continues to feel well .

Best wishes

Anne x