Hello

Hi Aileen and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Aileen,

I’m about 6 months in front of you as my chemo finished in July 2021  and now on 6 month check ups…so my first 6 month check will be July 12.

Very similar experience, large mass, not sure it was ovarian, histology classified it as 1c , hole in mass …so 6 x chemo. 
With the CA125 levels… mine was never over 35 even on diagnosis so normally I understand this wouldn’t have been a red flag, post operation it was 7 and after chemo 5…..I  found that the lead up to check ups were making me increasingly anxious…3 months isn’t that long when 3 weeks before your date the appts start for bloods and scans…it doesn’t really give you enough time to “forget”… it does make a difference moving to 6 monthly as it gives you a chance to move on in your head….make plans… I’ve just had a week in Scotland doing the sites ….started to do projects around the house which were put on hold while I was unwell….

So obviously we are all different in how we cope, I’m cancer free and intend to be until the doctor tells me I’m not…my joints still ache from chemo some days, but I’ll have to put up with that… Cancer was never something that I had considered in my life, it came, I coped with it and now I’ve closed that chapter … I really want to live my best life… but it does take a while to “move “ on from cancer and the impact it has on you.

I had a good experience with my medical team and take the view that if they say I’m ok then I am… you sound a very positive person but maybe you coped too well in your head when you where having your treatment and now it’s finished , you may be having a sort of after shock, my confidence levels took a blow as well. Your not alone in worrying pre appts, surely we all do and that’s gotta be normal…. The McMillan helpline is also available even when you have finished treatment and when I rang them on a standard question re my booster for covid, they also asked how I was coping after finishing my treatment and moving on ….

So I would say you are strong… from time to time you will feel unsure and anxious as  we all do, make some plans… big or small… I try to do both so there achievable. Gain confidence from them, take someone along with you to your check ups and write down questions as they pop in your head .

Ive accepted that in the future maybe I may get news that I won’t want to hear but I’m all good and cancer free right now and that’s a very good place for me to be in… 

Also be kind to yourself, it’s early days

Sue

Hi Sue,

What an inspiring and informative response to my post. 

It means a lot to hear from someone who has gone through the same experience, and is coping as well as you are. You are absolutely right ….. 3 monthly follow-up’s come around too quickly and you have just processed the information from the previous visit, when you are unnerved by the prospect of the next one.  

I applaud your positive  take on your cancer journey. Cancer was certainly not something I had written into my life goals / plan. I was extreemly healthy , a gym bunny, ate well and on no medication and no health issues.  So to just present with a large stomach bloating (which occurred over a weekend) to my GP and receive a cancer diagnosis 2 weeks later, was devastating. It took about 3 days to get my head around it - and I decided I could sit and cry and mope or give it my best shot to get better.  I chose the latter. I had no issues throughout treatment , and you may be right.  It is hitting me now !  In my head, my prognosis could have  been so much worse and I was happy with my levels post chemo.  My head space however was not expecting an increase in CA125 level 3 months after chemo finished.  Again, I was reading too much into the situation - my wonderful clinical nurse put me straight, explaining I am not on a slippy slope due to a slight raise in CA125 levels. They can drop as easily as they rise.  So I took comfort from her advice , stopped filling my head unnecessarily with “what if’s” and I am now trying to enjoy each day that I am cancer free.  I am off to Madeira with my husband on Saturday . We both need chill time.  Some more trips planned throughout the Summer - and I will deal with the next consultation end of July when the time comes. 

I am not quite secure enough in my recovery yet to even contemplate thinking about my cancer returning . I just want to believe that for now I am cancer free, and that’s how I want to stay..

Thank you once again for your positivity and understanding . it means a lot xxxx

Aileen