Ovarian/peritoneal cancer

Hello there.   I am really sorry to hear you have been diagnosed with ovarian/peritoneal cancer.  You will find lots of really great support in the forum.  I have never replied or posted - this is my first.  But I have read the posts pretty much every day, and have felt a lot of support just from reading others experiences and connecting in some way with someone else with a similar diagnosis.   I thought I would reply as I had a radical hysterectomy (everything gone, including appendix and omentum) in March this year (diagnosis of mucinous ovarian cancer).  So I am 2 months post op.   My recovery has been steady.   The first two weeks I was pretty much in bed - just getting up every now and again to pop to loo.  I bought myself a bed wedge/support pillow and piled my pillows around this - as I cannot sleep on my back.   This mirrors the bed support you will have in hospital and really helped me rest.  I started to side sleep around 3 weeks in and used a soft pillow to support my tummy.  You get masses of support and advice from the hospital and the Macmillan nurses - I was so well looked after.   Everything was explained.   So in a physical sense - I have recovered really well (had my first round of Carboplatin).   I can say that from a mental health perspective - I have found things incredibly hard.   The shock of diagnosis, The speed with which you are given information and treatment happens.  Then after the operation and you start getting up and about again (which you will) its like everything is normal but of course it isn't.   Please ask away in the forums and seek support - if you feel it might help.  Warmest of hugs sent your way. x  

Hi

For me I think that I was so terrified about the effects of the chemo and surgery particularly  that none of it turned out to be as bad as I was expecting. It’s a roller coaster of emotion but I thought if  all these other women get through it I will. I’m sure you will cope, just don’t put to much pressure on yourself and expect to be  super woman. Just be kind to yourself and look after your body and you’ll be amazed at how much your body can take and heal x

So pleased to read this as I also have this cancer. I start chemo this week and after 3 cycles and the CT that follows a decision will be made as to surgery or 3 more cycles of chemo and then maybe surgery. I had a hysterectomy at 32 because of endometriosis. It’s not knowing what is going to happen that, I find more worrying than what the treatment is going to be. Thank you for sharing your experience which has helped to reassure me of what may be ahead.

Hello EAH - thank you for replying to me.   I am sorry you also have this cancer.  I totally agree about the not knowing but I also I found the 'knowing' part to be really frightening.   Initially, I just didn't want to know any detail at all as I found the whole process terrifying.  I never asked any questions because I was too afraid of the answers.  I have only just started asking questions about my chemotherapy for example.   But like you - I was not worried as much about the treatment because I thought, well at least there is something they can do.   I had no fear about my surgery - because a week before this - I experienced horrendous abdominal pain and became very unwell very quickly.  My own suspicion is that my tumour had burst on the night of the really terrible pain.   I actually did not care what happened - I just thought - get me on that table and please get this thing out!   Do you mind if I ask what chemo you are on?   I am on carboplatin.   I have my second cycle very soon.   The staff are really kind when I have that done and they have a radio on/tea/coffee and feels kind of homely and 'normal' - so not so scary.   Please ask away - if I can help or support, I will :) 

My chemo is Paclitaxel and Carboplatin. I have opted to try the cold cap so it is going to be long days, 5-6 hours the consultant said. Because of all the delays she called me in today to check on how I am, as it is 4 weeks since I last saw her, and she had hoped I would have started my chemo before now, having been put on the escalation list, but it was not to be. Thankfully she said I still seem fit and well to start my chemo tomorrow and the groin pain looks as though it is my arthritis - I have osteopenia. Just glad things are now moving and not in a state of hanging on and waiting, Hope your 2nd chemo goes well.

Thank you for replying. Its really helpful to connect on here and i do not feel so alone. Hope all goes well with your chemo as well.  Fingers crossed mine goes ok as well.  X

First session today, with cool cap. I loved the cool cap - I haven’t heard anyone else say that! I do always complain of a hot head so maybe that is why I liked it.  So far no ill effects and hope it stays that way. Fingers crossed here for you too.

Great news that your first session has gone well and that you enjoy the cool cap!   I haven't heard of anyone else say they like it either - so that is also some good news!.  I have my second session tomorrow - so fingers crossed we are both doing ok with it. :) 

How did your 2nd session go? My 2nd session is next Wednesday. It seems to have come round quickly! Unfortunately on the Saturday morning, out of the blue when I got out of bed, I was sick, with no warning signals. I hadn't felt sick at all so hadn't taken the anti sickness pills but did then for 3 days. I don't see the oncologist until Tuesday so will speak to her about that then. Hope you are still feeling good, I have been fine since that day,

Hello EAH - ah sorry to hear about your sickness.  How odd though, no warning signals at all?  I hope you're feeling better now.   After my second dose - i picked up on the same pattern - so for up to 7 days, I noticed the various side effects - mainly nausea and fatigue.   I did experience the side effects with a bit more strength this time round.  So not sure if each time, you notice it more?   Or does it plateau out?     Although I am just on  carbo and nothing else.   My type of cancer doesn't respond well to chemotherapy but i guess they feel having something will make some difference.   Fingers crossed.  So I have my third round a week today - all being well with my blood tests.  I had to have a head scan at the weekend (due to a lump on the base of my skull) - oh joy of joys....!   But that fortunately came back normal but when they took the canula out - I did bleed a lot. which I would not normally do.  Sorry for war and peace!    I hope you are doing ok today .... xx