Not coping with waiting for grade

Hi Saz, I know exactly how you feel as similar thing happened to me when I was waiting for my results. It was over the Christmas period and CNS told me she would be in the MDT meeting and call me after with the plan and results. This is because I would be either treated at local hospital or another one in the next County if it was high grade. I never got the call. I waited till 5pm on that day then started calling and it went to answer phone. I couldn't do anything till the following Monday, so again started calling, kept getting answer phone. Left several messages, I was desperate, this was my life, my body. My cancer and I felt abandoned, I later found out that the CNS had gone sick and eventually I did get a call few days later,  from another nurse who read out the letter that was about to be sent to me as I really couldn't wait for it to be posted. But more frustrating news was that all it said was that ' my care' was being transferred to the other hospital. I eventually found out at the pre assessment that I had high grade Serous!!!! the local hospital wouldn't tell me for some reason, my cells had to be retested by the other hospital as the local one said it was inconclusive. That's no excuse for them not getting back to you but, unfortunately, these things happen and when they're short staffed they simply cannot cope, we are on the receiving end, so hopefully you will hear something on Monday, keep calling or leave messages,  will be thinking of you. On a good note,to give you a lifeline,  I am currently back to normal life after cancer and feel well, losing my extra weight. Eating healthy, lots of greens. No fast foods, no cakes or desserts, just lots of veggies and little fruit, eating meats only on Sundays, loving the experience of experimenting with different recipes with vegetables and feeling great, walking in fresh air, looking forward to our next holiday, I've got my life back and so hopefully you will get there. We're here for you. X

Hi Saz, I feel for you finding things difficult and it’s totally understandable. If you need someone to talk to this weekend, the Macmillan support line is open 8am-8pm. www.macmillan.org.uk/.../get-help

Hi Mad, thanks so much for taking the time to reply with your experience. It really helps me to know I'm not alone in this and that you have come out the other side and are well. Weirdly writing it all out helped calm me down as well! I'll keep calling on Monday xxx

Thank you I did dial their number last night but in the end talked to my elder sister who used to work at the Royal Marsden and has lots of good advice which helped a bit x

Hello Saz26

Waiting and not knowing what is happening next is so difficult. I remember it well, my results were delayed due to bank holidays and then I had to wait for the MDT. I kept calling and eventually emailed my consultant's secretary. My consultant phoned me within 20 minutes.

I was so anxious waiting for my results and although they weren't great I did actually feel better for knowing them and for knowing the plan.  I was Grade 3 too- my personal type was one called carcinoma sarcoma which is also aggressive. My treatment plan was to have some chemo and some external beam radiotherapy. I did not have brachytherapy.

However there seem to be differences between hospitals and also in our own circumstances. 

I was offered chemo and the radiotherapy to give me the best chance of avoiding recurrence. I was told that I would not need brachytherapy as mine had not gone to my cervix. 

Coping with waiting is really hard and the ladies on here will totally understand. As you have said-writing it out does help sometimes so please reach out to us.  

The Macmillan phone line is really good and I also used their online chat at times when I did not want to actually talk to someone.

My surgery was April last year. I was stage 1b and grade 3. After treatment I am generally well and now on check ups only. 

I hope that you get your results soon and that once you have them you will be able to talk to your team about what they recommend happens next. 

Take Care

Jane

Hi Jane, thank you so much for replying. I’m still waiting and really scared. A doctor phoned me last Sunday said the lab was overwhelmed and she’d call me tomorrow before Easter as there’s no MDT meeting on Good Friday. I’m not sure she will I am losing faith in the hospital but I hope so. X

Hi Saz26

I remember waiting for my pathology results to come back last Easter weekend, so I do understand how worrying it is. Really hope you hear something today.

Let us know how you get on, we are here

Jane

Yes this waiting is the worst but as you can see in my update above sometimes we have to get upset before things happen! Thank you for your support it really helps x