Scared and frustrated

Hi you lovely ladies. Had a call from my consultant today following my 1st CT scan I had Tuesday. At my appt last week he pretty much felt things were confined to my right ovary, however CT shows I have a mass on the left too. My CA125 has also risen significantly from when I had my first one a month ago. They had the MDT yesterday and he has said they need a specialist radiologist to look at the CT and I will be seen at some time next week after the MDT (hopefully)to decide if I need surgery or chemo first!

That means waiting over another week before anything is going to be done and that is frightening me as my symptoms are getting worse and I feel so uncomfortable most of the time. Plus with my CA125 rising so much I'm imagining all sorts!

Can anyone give me any tips on how you coped with the waiting as all I want is for them to start fighting this thing like tomorrow please! I can't focus or concentrate on anything else and feel like this disease is taking over my whole life and I want it gone!

Thanks for listening to me


16 Replies

  • There won't be much change in a week if at all. Even if you have fast growing cells that can't reproduce that quickly. So why not plan to do something nice that will put a smile on your face during treatment. Enjoy today tomorrow isn't promised to anyone

    LA xx

  • Hello so sorry you are going through this nightmare too...........the early days are so scary, this was me this time last year. I just felt sick literally all the time with fear, waiting on results, waiting on was an awful time. I had surgery first, within 2 weeks of getting my scan result, once that happened and I was given "the plan" I began to feel better, more in control. I hope you have lots of support, that's what got me through the waiting, lovely friends who were there to pick me up. I hope things move quickly for you..........keep strong. xx

  • Hi Bevs, it doesn't sound very long a week but waiting for the next step can feel as if every day is a year.

    I have been in there many times. I can remember having a dreadful panic attack not knowing if I could stay a live waiting for my next cancer appointment.

    I went on catch up tv & watch everything & anything just to keep my mind busy. I did text lots of people to fill the time up. I decided to spend more time with my family. I love art so made some home made cards.

    Take care I hope you can find things can keep your mind busy Cindyxx

  • Hello Bev,

    The waiting does stink. My mom takes solace in that the waiting means the doctors are trying to figure out the best plan for her. It is smart to consult radiologist to see if there is something that stands out to him/her that the doctor didn't notice!

    Wishing you the best

    Kris x

  • Aw thank you everyone your replies all make me feel better. I find having support from ladies who have been there seen it and worn the t shirt so helpful x

    My family and friends are great and I love them to bits but they too are in shock so the main topic of conversation seems to be my OC! I'm sure that will pass and I'm sure once something starts happening treatment wise I'll feel better.

    Your right a week isn't long I had a panic after the news I suppose and I have to trust thei experts are doing all they can x

    Thanks again ladies x

  • He Bev, the waiting is difficult, but we all have to do it. I was advised not to lift anything heavy during my wait. Personally I kept working, even though I was in a lot of pain and was practically eating pain killers. That was just me though, I hated having time off and I figured if I was concentrating on other people as my job needed me to do, I didn't have time to wallow in my own fears.

    You could ensure you have everything you need to go in for surgery, in case that comes first, a couple of nighties, some new PJs, slippers, wash bag and contents etc and perhaps pack a bag. You could plan ahead by making some meals that you can freeze. These will come in useful even if you have to get chemo first as you lift out of the freezer on morning of chemo and then pop in oven when you get home. You could even sort out some good movies that you'd line to see. Once they've had their meeting, you will be told the plan of action and things will start to move quicker. All the best.Ann xx

  • Thanks Ann I'm still working but finding it hard to concentrate and focus and yeah being uncomfortable and in pain sucks! My handbag resembles a pharmacy at the moment x

    Planning on shopping with my sister tomorrow to get all my essentials

    Thanks for the tips x

  • Beewild, You have all my empathy. Waiting to determine treatment was the most anxiety provoking time of all. The good news is there is no advantage to either having primary chemo or primary surgery as your first step. So, either way, you're going to get the best treatment for your situation. During the day I spent time with family and friends soaking up their loving energy. At night Netflix was my drug of choice. I binge watched my favorite movies until I could fall asleep. Currently 10 months NED. You'll do GREAT!!!

  • Although my surgery was booked within a few days after my ultrasound scan the reality was an 8-week wait for the surgery. I was told to build myself up for the surgery by eating plenty of protein. I was a bit nauseated but ok for the first 5 weeks but went downhill after that and was unable to eat at all. It is unlikely that you will have to wait this long. However I got through it and have just finished my chemo.

  • Unfortunately the MDT has a set date to meet but rest assured your nurse, radiologist and consultant and one other will come up with a plan suitable for you. Unfortunately you cannot do anything except wait. If you have pain seek medicine from your gp. If you are able do plan a nice trip out for yourself or a day or two away before you get a treatment plan. It is good for the soul to have a different focus.

  • Hi Suzuki thanks I'm planning to stay at my sisters this weekend and do a bit of retail therapy xx as long as there are toilets nearby lol can't believe I have to wee so often or it's uncomfortable!

  • Bev,

    for those of us that have had to wait a month or more once we got the news it can seem like the end of the world but it's not. Sounds like your Dr is on top the situation and getting you where you need to be. Sometimes everything happens so quickly that we don't get to think about things and make good decisions. I used this time to go and take a week to visit my daughter and grandson... it was the best medicine I could have taken and way better than any pain pill. It gave me the encouragement that I needed to fight. Days before my surgery my husband was placing masking tape on things and asking who did I want those items to go to. Gladly we didn't have to start giving things away just yet.

  • I totally agree with everybody else, waiting sucks but you'll soon be there. I did six weeks on the appointments merry go round before surgery and it was worth it all as I got the best treatment I could possibly have received and am still here to tell the tale. It's best to wait a little to get the best rather than rushing in before they know fully what they're dealing with.

    Try a little distraction, some retail therapy perhaps, you'll need some nice nighties and slippers for hospital, maybe watch a box set on 📺, I read so many books it got silly (I wore my kindle out I think 😊), I took up knitting again after many years (more retail therapy 😂), find something you really enjoy and the time will go and before you know it you'll be there with full knowledge and a plan of action in place.

    Do let us know how you get on and keep strong, sending big hugs ❤️Xx Jane

  • A week's wait really won't make any difference to the outcome though I appreciate that it's indescribably hard to have to wait at all so if they add a week to that it seems endless. Is there anything you can dedicate that week to that? Learning some relaxation techniques? Getting fitter ready for the op? It sounds as though it is worth the wait so that the specialist can have a look at your results if it means you get a more accurately pinpointed treatment and I expect you'll feel like that when they're only 2 more days to wait. A week can seem so long.

  • I hate waiting, and I think we can all agree on that. Don't let the un known take over the have to take care of it now. This disease shouldn't be rushed for treatment before all the tests and pathology are in. Enjoy today and the next 7. Don't worry, it'll make it worse

  • Thanks Rlenesue I'm trying my best to be patient but getting a bit anxious again as was meant to have an appointment this week and not heard anything yet

    Might chase it up tomorrow, also don't want to mither but I'm so wanting to start some sort of treatment soon x

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