Stressful waiting"""

Hi my ca125 has bein great staying at 21 post chemo which ended nov 2015.. then dissapoint hit when saw oncologist it rose to 180.. bein booked for a scan had a tabh i may 2015.. 6 cycles carbol/Taxol.. im worried sick the waiting for scan i havent got to see oncologist for 6 weeks.. how do u cope with bein told that and the waiting.. before my operation i had to have stents in my kidneys cus they wasnt working properly only got one on now but that was left in longer due to cancellation of appointment they were giving me a few problems any advice to stop me stressing over the rise in my ca 125

9 Replies

  • Hi Tracex

    I am probably not the best person to advise you about dealing with this sort of stress. However I can empathize with you as I am having a very similar experience just now with raised CA125 and waiting to see my oncologist.

    My own coping strategy of choice is to let myself have a short melt down and then decide that I am not going to spend precious time worrying about what may or may not happen. This works most of the time but then I have little 'break through crisises ' which is probably why I am awake at 3.00am!!!!

    Hang on in there. I think we are all amazingly strong women to be able to carry on living and functioning with this crappy condition . We will get through these hic ups and out the other side.

    Lots of love Julia x

  • Like you iam waiting on the scan,I to finished chemo in November 2015 after 2nd recurrence,then told last friday is back ca125 gone from 15 to 600,like you the waiting is driving me round the bend,my nerves are shot to pieces keep trying find things to do to take my mind off it,where in reality I would just like go to sleep until my treatment is sorted.anyway sending a big hug to Yvonne xxx

  • Thinking of you my ca level went uo slowly over a 12 month period and I was on wait and watch .Have not long finished my chemo for recurrence and my levels have dropped to 14 so am back to being monitered now I know the waiting is hard and its only human to stress I guess But I just tried to put it to the back of my mind .Have been told that Iwill eventually have to have more chemo .So am enjoying not having chemo and the side effects and just try to take one day at a time .Sending hugs

  • I think Cathy46 nailed it really for us, you have to try and put it away in a box until you see the oncologist. Whatever is in the scan wont change at this stage. Maybe distract yourselves a little and do something nice while the waiting is on. You will feel all the better for it. I am stable at the moment but there is always the possibility that something is around the corner. So a course in Mindfulness has helped me greatly and taught me to stop the negative thoughts around these stressful times. I am not disputing the waiting is hard but we can make it easier by being gentle with ourselves

  • That seems an awfully long time to have to wait for a scan and follow up if your ca125 is raised. Can you phone your oncologist or nurse to see if you can get it any sooner? The waiting is unbearable when you don't know what's going on or what the plan will be if you need further treatment. But in the meantime - and believe me, I know it's really not easy to do - try to be kind to yourself and do anything that you can do to keep your mind off it, whether that's exercise, meeting friends, or watching your favourite films, whatever works! While I was waiting for a second surgery I managed to get a few days away in Italy, I know it was just escapism but I really felt quite normal and happy for those few days!

    Hope you get some answers soon,

    Madeline x

  • Thanx everyone for your loving words.. life's hard but with people out there like all you that have messaged me big hugs and kisses great to have all your thoughts i work full time so keeps me busy just them times when u sit and then the brain goes into over-drive.. the panic sets on when i was diagnosed last year i dont no it didnt upset me as much as this time.. bein through the surgery and chemo stayed strong bloods bein great all way through and then this time it was like a bigger kick in stomach.. would ca125 go up if you had infection guess just have to keep everything crossed ... sending you all my love tracex

  • Hi Tracex just read your post my CA125 has gone to 600 ish my last scan showed that I had thickening which the onc say will most probably turn into the beast! its never a thought away but I'm ploughing on with my life I have another blood test next week and scan again in a further 4 weeks and intend to enjoy myself whilst I am medication free. I'm walking my dog as much as I can to keep me fit and accepting every invitation that comes my way. and if it rears its ugly head again I will fight it tooth and nail everytime!!

    Hope you can find some you time too keep posting with your updates xx

  • Hi Tracex

    Waiting is THE worst part. It's easy to say but please don't google things as you will make yourself poorly with worry. Take advantage of the support from your friends and family and try to remain positive. Some people swear by positive affirmations each day it's whatever works for you. Keep in touch on this forum. Sending positive thoughts your way xxxx

  • Hi Tracex

    I agree with everyone else-the waiting is awful! I find distracting myself works during the day-getting out in the garden, trips out even if its only shopping, an hour out on the archery field, sewing another chemo hat (!) keeps my mind busy. However, I haven't worked out how to deal with lying awake at 4am yet! If anyone has, let us all know!! Seriously, we all send our love and positive thoughts. I hope you find something that works for you. Be gentle with yourself-it's ok to feel the way you do. Try not to let this filthy disease run your life.

    lots of love



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