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, Everyone,

Happy Easter,and hope you're all feeling reasonably well!

Love, Hazel xxx

Hi Eileen,

Glad you're feeling a little better, I do hope you don't have to have a lumbar puncture, that doesn't sound very nice at all .  I also hope you continue to feel better as you have had an awful time of it and deserve a bit of normality.

Hi Hazel,

Mary still feeling good, just a little tired. We went out for a meal with some friends last night and had a really nice evening (first grown up portion she's had for a week!), then went to her Mum and Dad for lunch today. The Maffucci website idea was borne out of frustration as there is not a great deal of info out there, so my son said "ok Dad, let's create our own website, that's what I do". It seemed like a good idea at the time, but because this disease is so rare it was always going to take a long time to find enough participants to make it work. And of course we have a lot more to think about now.

I think Mary is coming to terms with the fact that we may not be able to go to Florida in June, even though I hadn't discussed it with her before, she was talking about her doubts with our friends last night. That has taken a lot of pressure off of me because I wasn't looking forward to having that conversation with her. We'll see what the onc has to say about it on Thursday.

Best wishes to everyone,

John

x

Hello, Laura, 

Hope you are doing OK - only one more to go after today, am I right?  Hope so!

Keep going, thinking if you!

Love Hazel xxx

Hi Ladies,

Hope all is well. Just wanted to wish those having chemo tomorrow (Thursday) the best of luck. I can't remember who is having what and when now, perhaps we need a spreadsheet LOL.

Mary has clinic tomorrow and hopefully starts cycle 3 of her Gem/Carbo all being well. She has been feeling good for a week now so hopefully should be ok. I have a few questions for the Prof tomorrow so hoping the answers will be favourable - will let you know how it goes.

Best wishes,

John

x

Hi, John,

Good luck to Mary for today, hope all goes well. x

I'm beginning to lose track as well, but to everyone having anything done over the next few days, good luck, and to anyone recovering, I wish you better!

I'm thinking of you all - my turn next week!

Lots of love to all,

Hazel xxx

Hi Ladies,

A good day at the hospital today.

Hi Jackie,

I remember you making this point about a year ago when Mary was on a Japanese regimen of Carbo/Taxol. This time around, her consultant has prescribed her GemCarbo but has split the dosage equally for week A and B. This confuses the hell out of the chemo nurses as they always think that she is on week A and needs to go to clinic. Yes, her consultant certainly seems to do his own thing and I asked him about this at clinic.

His rationelle was that many ladies cannot cope with the recommended dosage of chemo for week A, and so many times their neutrophils are too low to receive treatment on week B. By adjusting the dosage so that it is split over week A and B, you are less likely to miss a treatment session so that has to be a better schedule.

You cannot really argue with that, he is the top oncologist at the hospital and surely the NICE guidelines are eventually moulded by the best oncologists. We have faith in what he is doing, of course he cannot promise a cure but he will do his best to ensure her the best quality and quantity of life that he possibly can.

I also remember you saying that your onc plays it by the book and you felt like hitting him over the head with the book! LOL - well perhaps you should!

It's very quiet here at the moment, I hope everyone is ok.

Best wishes,

John

Hi All

Glad to hear all your news John it all sounds very positive. Fingers crossed the anti sickness will work this time, it will make the  treatments so much more tolerable. I'm glad the aims of treatment have now 'out in the open', it makes life much easier as you can now discuss things without worrying about what you are saying.

I just wish that the NICE guidelines filtered through quicker esp as my cons it not of the free thinking variety!!! on the other hand I can't complain as what he's done has worked well for me so far.

My sister is visiting at the mo (which is nice) and unfortunately my hernia problem is making using the computer difficult, so if i'm not around much don't worry, i'm actually fine!

Hope things continue to do well for you both

Jackie xxx

Hi John,

Hope Mary is OK, chemo today?

Good luck to everyone having anything done over next few days, inc. myself.  Have been prescribed diff. anti-emetics, so fingers crossed.

Love Hazel xxx

Hi Hazel,

Mary is fine apart from being quite tired, she has been for her blood test this morning and has been cleared to have her chemo this afternoon - our daughter is with her today. Hope you are ok and your chemo goes well and the new tablets make a difference, always worth a try.

I have booked flights to the Algarve next Thursday and all being well we will be going out for 4 nights - Thursday to Monday. If she feels unwell we will just not go and lose the flight money, but it will be Mary's week off chemo so hopefully that is when she'll be at her best.

Hope everyone else is ok, it has gone very quiet again.

Best wishes,

John

x

Hi Hazel,

Mary is fine apart from being quite tired, she has been for her blood test this morning and has been cleared to have her chemo this afternoon - our daughter is with her today. Hope you are ok and your chemo goes well and the new tablets make a difference, always worth a try.

I have booked flights to the Algarve next Thursday and all being well we will be going out for 4 nights - Thursday to Monday. If she feels unwell we will just not go and lose the flight money, but it will be Mary's week off chemo so hopefully that is when she'll be at her best.

Hope everyone else is ok, it has gone very quiet again.

Best wishes,

John

x

Hi, John,

I left home at 9am and got back at 7pm - God, it is such a long, boring day, even though I take puzzles, book, mags etc.  I would rather listen to Radio 4 but the reception is appalling in there!  It's so tiring too, although you are sitting on your bum all day!

I've taken one of the new anti-emetics already, and am wearing the wrist-bands you recommended, so fingers crossed!

I hope Mary stays well enough for your little trip next weekend - something nice to look forward to, and away from this interminable rain we're having now there is a hosepipe ban!

It has gone quiet on here again, hasn't it - I guess everyone is too busy with their problems, so wish them all well xxx

Love to you both, Hazel xxx

Hi Hazel,

What a long day you've had! Yes it does get boring, fortunately Mary got away just after 2pm today, that's the earliest so far. Hopefully that will give time for the steroids to wear off so that she will be able to sleep. This is week B, so hoping that the new anti-sickness tabs will do the trick again this week, and of course I hope your's do too. Glad you invested in the wrist bands (I haven't actually bought any yet), trouble is if something works for you, it'll be difficult to know what it was - but it doesn't matter so long as it does!

Yes we are really looking forward to our Portugal trip, hoping that Mary will feel well enough to go and with a bit of luck get some sunshine, have hired a car for £60 and the hotel is only £29 per night b&b!!! (both can be cancelled). We were laughing about the hosepipe ban too today, doesn't it seem ridiculous?! Mary is really missing her garden at the moment, I'll bet you are too.

Re Radio 4 - May I suggest you download some podcasts so that you can listen at the hospital. Do you have a small laptop or an mp3 player of some sort that you could use for this? or perhaps an SD card in your mobile phone? Here is the link if it helps - http://www.bbc.co.uk/radio4/podcasts/

Best wishes,

John

x

Hi Everyone how are you all doing. i was ment to start chemo today all arranged at

hospital last week then i get a letter on wed to in thurs to see my oc they have looked

at my scan again and have concided surgery so now i have to go to another hospital

first for a full body scan [which is furthur away] then if the tumour is only in the place

i can have surgery if  thats what i wont, i was all for it until they said there would be

a risk because where the tumour is its very close to blood vessels and could be

coplicated..there going to discuss it more with me when they get the scan back.

really dont know what to do now my family are split with what they think i should

do.HELP!! any advice would be grateful!

take care all sharon xxxx

Hello, Sharon,

Sorry to hear of your complications and setbacks.  My advice would be to try not to panic so much at this stage, but to wait and see what the scan results show.  Then when you discuss your options with the hospital team take someone from your family with you so that you can all decide together, or ask for more time to decide.

Let us know when you've had the scan results - I'll have everything crossed for you.

Love, Hazel xxx

Thanks for the tip re. podcasts John, I'll have a bash at it, though not sure if my phone will do it.  Can only try, I guess!

Hazel x

Thanks Hazel. for the advice think maybe your right not to panick to much till ive had the scan

but just wont results like now! you know what i mean id prepared myself for chemo today now

its all change!. take care sharon xx

Sharon,

Yes, I know - maybe I was a bit too hard on you, it's easy to get wound up about things, I do it myself.  Hope I've not upset you too much?

Hazel xxx

Hi Sharon,

Well your hospital certainly seem to be making this hard for you yet again! After all of the waiting they have put you through they are still undecided about the best course of action for you - almost making you decide for yourself what to do!

Hazel is right, you should take someone with you to the consultation, preferably a family member or a good friend. It is always good to have an extra pair of ears and someone else to ask questions, and DO ask questions it's very important. Start writing down your concerns now so you are prepared at your next meeting, talk to your family to get more ideas about what you should be asking. And if it works better for you, get them to ask some or all of the questions.

I asked a lot of questions at Mary's last consultation, her onc was all ready to rush off but I told him I wanted to ask a few questions before he did. We both felt a lot better after the discussion and I will make sure I have more questions for him at next clinic.

Good luck Sharon, you must get this sorted.

John

x

Hi Hazel,

Hope you are doing ok post-chemo.

If you need any help with the podcast stuff, let me know. Hopefully if you have a memory card in your phone, a music player and a hands-free headset, it should be possible. You would need to download the podcasts to your PC, then copy the files to your phone using your USB data lead, normally you can just drag and drop the files without installing any special software. Hope I'm not teaching you to suck eggs LOL.

Mary doing well at the moment, so keeping fingers crossed for Portugal on Thursday.

Good luck,

John

x

Hi All

just wanted to wish you good luck with your holiday John, hope you both enjoy it.

Best wishes

Jackie

xxx