Scan and Results Update

[kazrazmataz]

Following on from my previous post whereby I said had post First line scan date of 29 Dec and was not booked in to see consultant until end of Feb.

Following on from advice and the fact I had been stressing like mad, I rang the CNS nurse Today thought this is not right how can they expect me to wait nearly 2 months before telling me if scan is clear or its still there. Worried also if progression might get earlier appointment or phone call so would be scared of the postman or the phone ringing in case it was bad news! Nurse was great said the way I am feeling is normal, said I was in a time bubble and everyone feels like this pre scan results and the uncertainty. She has now arranged for me to get a clinic appointment on 8 Jan as that is the first Multi Team Disciplinary meeting where they will discuss my scan and see me in the afternoon. She was also very reassuring saying if I feel well (which I do) that that is a good indication and I should be reassured by that. Me being me got into further discussion as told her I am in training to do a sponsored swim for Target Ovarian as they are doing a lot to raise awareness. Moved on to discussing recurrence and treatment and she said the treatment is getting much better with improved drugs and therapies so there is hope for anyone with recurrence moving forward.

Thank you for the replies, feel much more settled as I have a plan and know whats what without a lengthy delay and weeks of uncertainty. On that note I wish everyone best wishes for Christmas and a prayer for everyone this Christmas Time xxx.

[trix70]

Hi, so glad you have a plan now and can now relax for Christmas. Normally I get my scan results in 10 days, but have just had to wait 19 days with a CA125 at 1015. Thinking I would get an emergency appt in the post or by phone to go in earlier, stressful. Then when I did see the oncologist he was quite laid back, some spots in abdomen and a couple on the liver. Would have been see you in 3 months !! As I am well. But I am going into a trial. I have been very happy with my care so far but your mind does go into overdrive with it all. Best wishes for your results. Trix

[kazrazmataz in reply to trix70]

Thanks Trish, have a lovely Christmas, good luck with the trial xx

[kazrazmataz in reply to kazrazmataz]

Sorry meant to type Trix not Trish oops!

[Elaine13]

So pleased you have managed to arrange an earlier appointment. The comforting words from your CNS were good to hear too.

Have a lovely Christmas and good luck with the swimming. Perhaps set up a just giving site - as a water hating turtle swimmer I will sponsor you

Love and hugs Elaine xxx

[kazrazmataz in reply to Elaine13]

Thanks Elaine, hope you are feeling a bit better. I was totally wiped out after Chemo 1 so I asked the Onc if anything could be done and he prescribed extra steroids (just one per day after the usual 3 days of 3 as it turned out I felt much better after chemo 2 so did not need them but he said they help boost energy levels so worth you discussing this with them. Thanks for the pledge to sponsor me. Hope you have a lovely Christmas, are you still going to Cornwall?

[Elaine13 in reply to kazrazmataz]

Hi there, thanks for the advice about steroids. I am seeing my onc tomorrow and will let her know how rough I have been. What I am really hoping though is that chemo 2 is easier and number 1 a bit of a blip. It seems to have been that way for you. Perhaps the body gets a bit of a shock with the first one!

I am still planning on going to Cornwall New Year. I am a little apprehensive being so far away from the hospital but I can't live my life that way.

Have a lovely Christmas, I hope you have a special time in Norfolk.

love Elaine xxxxx

[kazrazmataz in reply to Elaine13]

Hi Elaine, please stress how rough you have been, I detected they were prepared to fob me off as my bloods were OK so they were not concerned but they don't know how we feel. However I said I had expected a week or so post chemo of feeling a bit off but I could not put up with feeling rubbish the whole time it was too much. My CNS was at the appointment and she said 'no 2 chemos are the same' she was right but I'm glad I did not take any chances and pushed them on it so make sure you don't leave that hospital until they give you extra steroids just in case. Enjoy yourself in Cornwall you can still call the helpline.

[Hidden]

Hi K I am glad you are in a happier place now. It is great you dont have to wait too long for the result of the scan and your nurses was in fact very reassuring. Yes we all crumble at scan times and waiting for results, I had myself so worked up after last scan though outwardly I was calm, my negative side was telling me I would be back on treatment. So got the apt for the result and the onc came into room beaming and he said all is good, your scan is good and your bloods are very good. All I could say was "Really". He was laughing at the idea of me being silent. He questioned why I was so stunned, had I pain, was I sick etc, I just said nothing wrong with the body just the brain. We do go into overdrive no matter how much we try not to. Well now sort your Xmas shopping etc and sit back and relax and as I said before, be kind to yourself and give yourself a treat, you deserve it

[kazrazmataz in reply to Hidden]

Hi Suzuki, I feel more settled now my appointment has been brought forward but still have my moments especially when in bed, I keep prodding myself and thinking I can feel lumps but I guess there is scar tissue from the op! I am trying to take your advice and intend to sit back and relax and enjoy Christmas, hope you are following your own advice too! Best wishes and have a lovely Christmas you deserve it too xx

[Hidden in reply to kazrazmataz]

Its not funny but I would often do the same as you, prod and see if tummy is swollen when lying down, I would how many others do the same, probably most of us. But that is the norm after cancer, there is always the fear lurking. Forget about the tummy and try and get out walking if you can today sending you hugs

[kazrazmataz in reply to Hidden]

Went for a nice long swim at my local Sports and Leisure club which is right in the middle of a retail park so went a walk round the shops after and bought a few more Christmas presents so had a lovely day. Watched last nights Apprentice think Roisin is fab hope she wins x

[Jo-Bo]

I am glad your appointment has been brought forward. I have a scan on Monday and will get results on 5th of January. I am intending to enjoy the seasons festivities and try not to worry too much. I hope you can do the same.

[kazrazmataz in reply to Jo-Bo]

Thanks Jo good luck for your scan results too, have a lovely Christmas xx

[Solange]

Very pleased for you that you have had that chat with your Cancer Support Nurse and now feel better. What would we do without them? Hope you get good news in January. Have a happy Christmas and try and forget all about this horrid disease.

Love from Solange.

[kazrazmataz in reply to Solange]

Hi Solange, thank you for your reply I am so glad I spoke to my CNS she was great. Have a lovely Christmas and here's wishing we all could forget about our horrid condition and live one hundred percent in the moment now wouldn't that be fantastic xx

[daisies]

great to read your news. I see that others have the long waits also - so that is an issue everyone should raise with their hospital treatment centres,

I am hoping when i see my oncol next week that he will give me the go ahead to back swimming. I miss it do much as a form of exercise. Will probably sink the first day I go back - wonder am I too old for arm floats.

Daisies

[kazrazmataz in reply to daisies]

Hi Daisies, never too old for arm floats or a rubber ring! Hope you can go swimming it really lifts the spirits, we could do a joint sponsored swim but only if you wanted to as I am happy to go it alone (will be in the pool on my own anyhow)! Have a lovely Christmas xx

[Hidden]

Daisies you will be fine if you take it easy for the first day, I am looking forward to our Carol Concert tonight, organised by Bravehearts Choir for Cork Arc Cancer Support House and Cope Foundation and our choir expenses. I am wrecked from rehearsals and the raspy voice from Avastin which is rather sexy haha. My gp wants to send me to an ent consultant but he doesnt know I am singing but I will be fine after tonight Wishing you well