Fed up! 11 weeks since my urgent referral and still no answers

Hi HoustonIHaveSoManyProblems 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 Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

It does sound like you've been through a lot and I hope you don't have too much longer to wait out what's happening and what your treatment, if needed, will be.

Hi, just reading your post and it’s such a similar situation to me. I’m recovering from my omental biopsy yesterday.  The huge mass is making eating and bowel movements almost impossible now. Initially was told I could have surgery but now that my CT shows deposits on peritoneum, omentum and lymph nodes they said chemo first. I’m scared the biopsy will remove that chance for me.

i really hope you’re doing well. ️

Nx

Hi brynhild

i have been diagnosed with stage 4 ovarian cancer with a spread similar and more to yours and I am starting chemo on Monday so hope this puts your mind at rest a bit about not getting the chance to have the treatment xx

Thank you for your reply. I do hope we both manage to tolerate it well.

best wishes xx

Yes a bit scared as it’s the first one x

I was told mine will probably be 4-6 cycles of carbo/taxol and I’ll probably lose my hair. I’m hoping to at least try the cold cap. Other ladies here have said it’s not been too bad. They have great tips for keeping comfortable and making small meals in advance and snack sized foods. That has given me some hope. I live on my own so a little worried about moving around initially but I really want to get started to stop any further spread. I’m very sore after biopsy as I have lots of fluid which caused a problem trying to pin point the biopsy site. Feeling a bit like a pin cushion these days. 

try not to worry as the nurses will make sure you’re comfortable at all times. Please let me know how you get on I’ll be thinking of you. 
Nadia xx

I am not going to use  the cold cap as I believe the treatment takes longer I’m also been told I’m having carbo/taxol 6 rounds with scan after 3  my son is going to be with me the first time which gives me a bit of comfort  I had a tour around the unit yesterday and the nurses where lovely I hope you get started soon as am worried about spread too as it’s been nearly 2 months already since I started this journeyI will let you know how I get on 

Nikki xx

Hi bryhild

how are you getting on I had my first chemo yesterday and was frightened to start with but the nurses where great I had my treatment took about 6.5 hours all in all they give you all sorts of stuff before the actual chemo but up to now I have had no side effects and because of the steroids they give you for the first few days I have been cooking cleaning and shopping this morning just sitting down now not because I’m tired just think I should lol  hope all going ok with you and your starting treatment soon xx

Oh Hi, that’s great news. I was thinking about you all day yesterday.  Wow 6.5 hours sounds a long slog though. So is that you for one cycle or do you need to go back again this month? 
Ah I’m struggling to be honest, I’m wiped out with tiredness, not sure if it’s the daily double dose of Heparin but it takes me ages to get going each day. Hopefully I’ll get my MDT update tomorrow and I can speak to the consultant to check if I can take anything else to help me. I’m trying to get vitamins naturally through my food to combat it. I’m very symptomatic and finding getting comfortable a real struggle now which they said the chemo would help. I live quite close to the unit where I think I’ll be sent for chemo so hope that helps me too. 

That’s really great though that you got through it. ️

Thanks for taking the time to let me know x

Nadia xx

I have one cycle every three weeks so it gives you time for bloods to recover I had 3 hours of carbo and 1 hour of taxol after, probably spelt wrong  but they give you steroids and anti hystermines first through the drip so that’s why it takes so long and they gave me a few pills to take at home like steroids and anti sickness the day went quite quick and you get served tea and sandwiches soup as well. I think it might have got rid of a bit of fluid in my stomach coz I don’t feel quite as bloated but hopefully that will improve more with next treatment which is 15th  July sorry to hear you are struggling do  you have to have heparin all the time? I always have in the morning porridge fresh berries and a banana and I mix in a actimel for vitamins unfortunately after you start chemo you can’t have probiotics which I missed this morning I have been eating fish and chicken mainly with green veg and new pots and peanut butter on wholemeal toast and I’ve cut out sugar hope all goes well tomorrow let me know how you get on I will be thinking of you

nikki xx