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

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

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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

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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

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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

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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

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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

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

Dear John,

Thank you for letting me know about Mary-I feel really really upset and sad.

I followed Mary's journey as described by you from the beginning and felt our situations were very similar and had we met we would probably have got on very well.

From your posts I could tell what a lovely kind man you are and how much you loved Mary-you did everything you could possibly do to make the time after the diagnosis as happy and hopeful as anyone could and I am sure she appreciated and understood that.I am glad that you have a lovely family and friends to support you.

I totally understand that you may not wish to post on this forum anymore but I would like to thank you for the kindness and support you have given me-it meant a lot and your little messages cheered me up.

If you ever need to talk or need support in the future I would be more than happy to help.

Thinking of you

Anne

Dear Anne,

Thank you so much for your kindness, yes I felt too that you probably would have got on well with Mary. I cannot believe how fast things changed for Mary, the last time I posted on this thread I was full of optimism and was trying to encourage you to stay positive. I had feared at the time that we may have lost some of the other ladies on here due to their long absence. I am sorry that my news has upset you but my message is still the same, please try to remain positive and have faith.

I am expecting the crem chapel to be packed to standing room only on the 25th, there were about 120 people at Mary's 50th birthday party last year and I have a feeling there will be a lot more for the celebration of her life.

Did you have your holiday? I can't remember now when you were going. If so, I hope you had a wonderful time.

I'm so glad if I have helped you and others a little, I have personally found many people on this forum to be very helpful to me during our darkest moments.

Take care,

John

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Dear John,

I am very touched that you found the time to reply to me considering all you are going through at the moment.

About grieving I think we all cope and react in different ways and at different times and we do a lot of grieving from the moment of diagnosis-the reality is that my life as it was has been taken away and trying to make the best of what I have been left with is not very easy as you know only too well.

Anyway I did have a lovely holiday thank you.I am back to being a lady who lunches and enjoying every minute I can with my extremely caring and supportive husband and children.

I am sure the celebration of Mary's life will be wonderful,thoughtful and very emotional and I am sure you will have lots of people who are more than happy to support you when you need them.No-one can remain strong all the time.

I won't be returning to this site much in the future -I occasionally browse sites which specifically deal with ovca only where there is more interaction-but I will never ever forget your kindness and support.

Do take care John and thank you so much.I will often think of you and your family.I think your fundraising is wonderful and it will hopefully give you something positive to focus on.

Best wishes

Anne

Dear, dear John,

I have just seen your sad message.  I am so, so sorry, and very, very sad, shocked and upset.  Please take comfort in your wonderful memories, and the fact that you were a most wonderful, loving and supportive husband.

My love and condolences to you and all your lovely family.  God bless.

Hazel xxx

Dear Hazel,

Thank you so much for returning to post such a lovely message, I had been concerned about you and Roy as the last post you made told us that things were pretty bad. I do hope that your situation has improved now. It has just been Anne and I chatting on here for a while so I am also concerned about the other ladies.

We are coping ok as a family, focusing on putting on a nice celebration of life for Mary on Tuesday, and thinking about things we are going to do with our lives going forward without her - although she will always be with us. While I am typing this I am looking around, and she is everywhere - our beautiful home and garden are a testament to her dedication as a homemaker, and she has left me with three wonderful (grown up) children that I couldn't be more proud of.

Getting a bit emotional writing this - but in a good way.

Dear Anne, thank you again for your responses - it seems that you started posting on this thread just as it all went quiet, and I do understand that it can be a little frustrating. But do keep an eye on the forum as I am sure it will become more active again at some point, and you have a lot to share with others that may be very helpful.

Best wishes,

John

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Thinking of you all today, John, and remembering Mary.

Love Hazel xxx

Dear John,

Just to say I am thinking of you and your family today.

Take care

Anne x

Dear John,

I just wanted to add to the well wishes of your Cancer Chat friends and say that all of us Moderators will be thinking of you too today.

I'm sure the celebration of Mary's life will be a wonderful and fitting tribute to her.

Very best wishes to you and your family,

Renata

Cancer Chat Moderator

The celebration of Mary's life went very well, there were over 200 people in the chapel which was so humbling to see. I was so proud of my children, all three got up and said their piece - my daughter had a bit of a wobble but managed to say everything she wanted to. All in all it was a wonderful celebration, sad and happy in equal measure.

Without the love and support of my friends, family, Mary's colleagues, and of course the wonderful people on cancer chat, I do not think I could have done this. So thank you all for your part in that, we have managed to give Mary a service to be proud of and I am very happy about that.

I have just set up regular monthly payments to Cancer Research UK and also to the Hospice Lottery, which supports seven local hospices. If I win, I will donate my winnings to the Hospice that looked after Mary. We will also be looking at raising money for them in other ways.

Take care,

John

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