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What mindset to have before results?

Posted by sunny1

27 Jan 2012

I had my 2nd ct scan yesterday after 3 lots of taxol/carbo. I find out on thur if its done anything to the cancer and that I will be having surgery next or more chemo. Im doing ok at the mo but do I fear the worst news and anything else is a bonus or do I just hope they say yes its surgery next but then be gutted when they say the chemo might not be working? Its such a limbo time to be in and today should be no different before the moment I walk in that room. They would have had their mdt about me today so my 'fate' is already in my onc's notes ready to tell me. How do you all cope with the limbo and waiting? Its such a weird surreal state to live in isnt it?

Kate x

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22 comments

wendydee Volunteer

27 Jan 2012

Poor you, Kate, I do so hope it's better than you're expecting next Thursday. I often try distraction techniques, a massage, a shopping trip if you feel well enough (ditto a glass or three of wine!), or just some rubbish on TV or a good DVD, anything to pass the time and speed you towards the moment when you know what you're going to be up against. You will cope better when you know, I'm sure. As you say, it's the waiting .....I felt so much better when the treatment plan was getting going, there's a sense of inevitability then.
All the best, and don't forget there's always someone here to say "hold on, you'll get there" if you're having a wobbly moment or need to let off steam. Try the rant club, search box, BBFC, if you need a bit of a giggle.
All the best
Love Wendy xx

sunny1

27 Jan 2012

lol Ive read some of the BBFC, and will continue to do so!

Its weird, I guess we all feel like this but I had a good life, never moaned about anything and Im just so annoyed that me and my family have to face this. Im not a 'why me' person but cant we all just say a collective 'why me' from time to time? 'Why not me' is usually what comes into my head as I know this can strike anyone at any time.

Thanks for the reply x

BusyLizzie

28 Jan 2012

Hi Sunny,
I have tried to avoid saying 'why me'. Lots of people younger than me (I am 45) have this or other diseases. I had 44 very healthy, excellent years. However, the one mind game I do play - which is probably not politically correct is - I can feel sorry for myself thinking I will not see 50 but think of all the people who have died without warning since I was diagnosed in May 2011, and thought they had long lives in front of them.
For instance the red arrows pilot who crashed in the Summer, Amy Winehouse and this week the lady who lives opposite me. Mid 50's. Ambulance came (all the neighbours thought it was for me). But she collapsed from liver failure after quietly drinking herself that way. She died yesterday and her poor husband now is alone - this time last week he thought life was normal.....At least I have talked to my hubsand and we know how we feel about each other and plans for his life without me - a happy one with motorbikes and challanging holidays with husky dogs. When I depart I may not be prepared, but at least I will not have left anything undone or unsaid that I felt important. A complete life in that sense, and for me that is comforting. BUT I am still fighting, I am not done yet. I am on second line chemo.
Love Lizzie
X

MargaretJ

28 Jan 2012

Dear Kate,

It's a horrid time but, ifit helps, it seems to be fairly normal to have debulking surgery after chemo 3, that is what I had in Jan 2010. That was followed by 3 more chemo cycles and almost a year before they found another tumour. I had that removed in December and I am now well on the way back to normal.

In the interim I'm with Wendy! Find some distraction. I refuse to listen to myself when I get in "why me" mode and put music on to drown myself out. Luckily I live alone and both my neighbours work during the day. I did put a note throught their doors asking them to let me know if it did disturb them so I can avoid making enemies. They both know I have cancer and sometimes need
An outlet for my frustration.

Good luck for Thursday! I hope your gynae specialist is as nice as mine. Tim Broadhead has a fan club in York! A friend of mine who has been through the mill for other gynae cancers refers to herself as leader of the "Broadhead Babes". We are all rooting for you!

Margaret

Heffmeister

28 Jan 2012

I'm so with you on this one! I'm in limbo too and it's driving me mad. My mid treatment scan showed no change which was horribly disappointing, I've just done the other 3 doses and am waiting for my final scan next Thurs. I've already been referred to a new surgical team but haven't been seen yet.

I think it's the loss of control that's the worse. If feel like my life is in someone else's hands. I plan to take my mind of by seeing friends, going out for lunch etc next week. I haven't felt well enough to this week as recovering from chemo on Monday. Wishing you good luck x

jennybutler

28 Jan 2012

hi kate I too had to wait like you and then told not gone back enough so had to have more chemo then hey presto next appointment after more chemo they did the surgery then 2 more chemo been clear nearly a year now dont worry.Even if more chemo needed first you WILL be fine. love Jenny xxxx

sunny1

28 Jan 2012

Thanks for all your replies they really really help as I know that you all know how it feels at every stage. Wish I didnt have to come to this forum but dont we all, thank goodness is exists. They think its odd because I am only 35, so young to have OC so 'bad' the spread in my abdominal cavity is quite bad I think attached to the omentum so that will be removed too. I know Ill be a bag of nerves before that appointment on thurs but until then, life goes on, and after that appt, life goes on!

x

sarah1963

28 Jan 2012

Hi Kate
It is all such a roller-coaster of emotions. You couldn't come up with anything more effective at causing mental torture if you tried. And we all have to go through it - knowing decisions have been made but having an agonizing wait to find out what they are.
I had to have 6 cycles of chemo before they operated on me (I was 44 at the time) The disappointing mid point scan was a blow but in the scheme of things it did me no harm. The operation eventually went far better than expected and my CA 125 dropped into single figures. So even if you don't get the go ahead for surgery at this stage don't despair. Hopefully you've stopped reading this site for the weekend and are out getting on with stuff but if not... we are with you!
Love Sarah

jennybutler

28 Jan 2012

mine was on my omentum too often goes there so still dont worry. Smile it helps you feel better. love again Jenny xxx

AnnieMulholland

29 Jan 2012

Dear Sunny

I wish you luck for Thursday and hope the news is good. It does seem very cruel to be struggling with ovarian cancer at the age of 35 and I have no doubt I wouldn't have been coping half as well as you had I been diagnosed so young.

I'm 59 now but life is no less precious. I had my first post chemotherapy CT scan very recently and felt just as you did leading up to the appointment. My wonderful husband suggested we go in expecting no change so that anything better would be wonderful. We did have the good news that the tumours had disappeared but just 6 weeks later there are signs I might be in the process of a relapse. We're waiting for blood tests right now to see if it's all gone pear-shaped.

This is rather a long-winded way of saying celebrate every day when you're feeling well. It would be such a shame to spoil today worrying about tomorrow. Life with ovarian cancer can be a roller-coaster so even if the news isn't quite as good as you hope for next Thursday don't forget there's sure to be a silver lining in the clouds and there will be many other better days for you.

Reading through all the posts it seems we have many different ways of coping. I hope you find comfort in our love and support. Keeping my fingers crossed for Thursday.

xxxx Annie

BusyLizzie

30 Jan 2012

Hi Annie,
I can't believe this. That is so sad. I am hoping it is something else and not a relapse.
I had my breast appointment today. They think it probably is cancer, they are going to do a biopsy to be sure, but the lady Dr said (in the nicest possible way) don't worry about it - it is the ovarian cancer which you need to worry about!
Let is know how the blood test goes and blog for us (if you feel like it). We thought, like you, you were off to work.
Love Lizzie
X

AnnieMulholland

30 Jan 2012

Dear Lizzie - I can't believe your situation either. How do you cope?

I've just been for genetic testing and was told if I'm BRAC1 or BRAC2 positive that I could have a predisposition to breast cancer as well. Apparently if this is the case there are PARP inhibitor tests that have been very successful. I just wonder whether you've been for genetic testing and whether this might be an opening for you.

I am off to work .... soon - it just takes ages to go through all the interviews and my case is a bit complex as my job description is being amended. Hopefully I'll be back up to 3 days a week very soon. To be honest I can do with the injection of cash again!

I'll let you know how I am. Generally I'm feeling well. I think it might be the stress of negotiating a return to work that's causing so much discomfort and loss of appetite.

Sending loads of love as always. xxx Annie

BusyLizzie

30 Jan 2012

Hi Annie,
To be honest I cope by knowing the end is probably quite near - but that it is not over until the fat lady sings. So I love the time I spend with my husband, and we watch films and laugh still. I treasure every day with him. I am not in any pain as such. They did test me for BRCA1 and BRCA2 as I am below the average age for oc, but they found no alteration. As they say, there are thousands of strands in your DNA, and they are only testing for the 2 they understand are related. There are probably loads they do not know about. They have stored my sample though so one day, if they find more, they can see if it explains why I also had it, which may help them work out if their theory is right. I am holding on and hoping caeylx kicks in. If I am still fundamentally functioning by mid March and they find it is not, then we have some other options both with my own oncologist, my second opinion guy and another plan I am hatching.
I do hope Annie, there is another explanation for the way you are feeling or it is just the anticipation of returning to work. Please let us know when/if you feel like it.
Love to you too.
Lizzie
X

AnnieMulholland

31 Jan 2012

Dear Lizzie - Thanks so much for your message. I dreaded having the news that you might feel you're running out of time. I do hope the Caelyx kicks in and gives you some relief. I'm also behind you all the way in continuing to look at Plan B and C and D and so on.

I should add that I've enjoyed reading your news and blogs over the few months I've been part of this community and have always rather thought of you as 'head girl'. You've done so much research and have shared your knowledge with us to help us find our own alternative plans. You've been an inspiration throughout.

I had the results of my CO125 today and the count remains low so it's assumed the pain and loss of appetite must be something else. I've learned not to get too over-excited or unrealistic on this cancer journey and hope I can replicate your example andremain calm, dignified and quietly optimistic to the end.

I hope I'll have come to terms with a short life expectancy when the time comes. Like you I enjoy spending time with my family and husband. It's amazing how much you can laugh and enjoy simple things even as the options close in.

Keep listening out for the Fat Lady Lizzie!

with loads of love xx Annie

BusyLizzie

31 Jan 2012

Hi Annie,
Thank you so much for your lovely message. Superb news that your CA125 is still low, so it is something else. As you say, probably anticipation of a change of lifestyle and back to work. I will blog again, when I know which way it is going. At the moment I have to hope it is just that the caeylx has not kicked in yet. Take care and keep us posted on the return to work.
Love Lizzie
X

sarah1963

31 Jan 2012

Dear Lizzie
Is it mid march when you find out if the Caelyx is working? How well do you feel in yourself? Hopefully the horrible draining has helped you feel more mobile. I'm glad you aren't in pain. You aren't missing much as it is cold and gloomy outside - most people would rather be snuggled up in front of the fire at the moment. I am sure things will improve. There is Avastin next if the Caelyx doesn't do the trick. Any movement on the CA125?
Thinking and worrying about you a lot! My faith is very important to me. I am going to a healing service tomorrow and will light a candle for you and pray for all of us.
Love Little twin

BusyLizzie

31 Jan 2012

Hi Little Twin,
Mid March I am having a CT scan, along with how I am feeling and my CA125 we'll decide if we are wasting time or not. Yes, my oncologist has mentioned Avastin so that is a possibility and I also have another plan. I still try to keep walking while I can, and have just managed a walk as light snow fell. Really pretty. It enabled me to see a couple of neighbours on my walk too which is always lovely. My CA125 reading will be done on 7th Feb exactly 4 weeks since I started the caeylx. I don't think there is any improvement yet given I am starting to bloat up again, but they did warn me, it is likely to be the 8 week marker before we get some idea. How are you feeling? Is the XL184 still keeping everything stable? I will think of you lighting a candle and praying for us tomorrow. A lovely image.
Love Lizzie
X

sunny1

29 Jan 2012

Annie and to everyone else who has replied with such kind words, thankyou so much for them, they mean so much. Ive put thurs out of my head for now and only want to get butterflies and anxiety the minute I walk in that room and not before. sarah1963, thats encouraging to know thankyou, so maybe I will need 6 cycles before surgery, we will see.

Love and thanks Kate x

sunny1

31 Jan 2012

I had a letter today with an appt with the gyne consultant that is 30 min before my onc appt on thurs. The last time I saw the onc she said if Im in line for surgery next then Id see a gyne on the same day. This is prob good news right? In as much as Im prob seeing him thur to discuss my imminent surgery?

Kate x

BusyLizzie

31 Jan 2012

Hi Kate,
That sounds logical to me. Get packing those nighties

Love Lizzie
X

sunny1

1 Feb 2012

Thanks Lizzie. I hope I sleep ok tonight, tomorrow is a BIG day for me and my family/friends I can feel my phone is going to be going haywire.

K x

BusyLizzie

1 Feb 2012

Get some rest (it's just like Christmas Eve LOL!) and all the best for tomorrow.
X

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