Hello Llublu

I can identify with you, I too have been diagnosed (15 Dec 23) with clear cell ovarian cancer, mine is stage 4 and it is very worrying reading up about it and the prognosis. It must be even harder with a family to think about, I can only imagine that as I am single. 

It's alot to take in isn't it, & it seems so unfair. But try not to be hard on yourself. Trying to find out information is natural. Ofcourse you want to know, but I'd suggest sticking to UK sites. I have found Ovacome charity very good, they sent me a leaflet specifically on clear cell cancer and will chat through it all with you on the phone anytime. 

You will likely have started treatment now. I started chemo 2 Jan (carboplatin paclitaxel and bevacizumab) 3 weekly until my tumour shrinks then surgery, more chemo and radiotherapy. I am finding chemo tough, and my hair is gone. I took control before it all went and shaved it off (well my sister did). It helps to do things to feel in control of your journey. I really dont mind now and had a giggle with my sister trying on funny scarves and hats at my hospitals cancer centre!  I try not to think negative thoughts because it doesn't help me. I take one day at a time. My family and I are very close and its devastating for them. I live alone and need my own space as its very overwhelming all of this. Its not a situation we'd choose, we are thrown in at the deep end! There is lots of support for your family too. Your sons school and support groups for your husband.  See whats available locally. 

I find nature helps me alot. Im a wild water swimmer but cant swim now due to infection risk which is gutting for me so I try & walk everyday no matter how bad I feel, just round the block is better than nothing. I have a meditation app CALM on my phone, its great for in the night, sleep stories, light music etc. I'm seeing a pattern forming of when my better days will be so I can plan things in. On days I feel rough I accept it & do very little, just rest. 

Accepting our situation is hard but for me it has brought about peace, giving me space to focus on what I CAN do going forward to help myself. Its not going away, yes its so unfair, im a good person always helping others when I can, so why me? But it just IS and that's it. 

Llublu I'd love to stay in touch and see how we both get on. I'm in South of England in Surrey btw. 

Much love & strength to you ️ xxx

Hi Kazzy-H ,

Good to hear from you. I'd love to stay in touch. I'm full of admiration already for your approach to this. 

My update is that I had my first chemo on 22nd Jan - paclitaxel and carboplatin. The side effects weren't too bad for this first round but my hair is now starting to slowly come out. I've taken a leap and booked a wig appointment for Friday! Going with friends. if that goes well, I too am taking control and cutting the whole lot off. My hubby is pretty bald so at least we will match!!!

I am trying to be really positive. I hear you when you say about focusing on what you can do and not spiralling down the rabbit hole of what ifs and focusing on what you can't do. 

Setting myself little goals for every day is what I'm doing - whether it be house or life admin, clearing out a drawer, taking the dog for a walk, just so I feel like I;m not sat at home like a useless sausage. It's working for me at the mo but I've been lucky so far and felt quite well after the first chemo. Second session is on Feb 12th so we'll see how that goes. 

Thanks for all the advice by the way.It's good to have someone to talk to. 

So, where are you at now? It's a while since your chemo. How you feeling? What's next? 

Looking forward to hearing from you,

xxx

Evening & great to hear from you.

So pleased you got through your 1st round ok, and are setting yourself small goals every day. It definitely helps even if its just the distraction for a short while. Its interesting I have Avastin targeted therapy WITH my chemo? I've yet to hear of anyone else having this combo.. 

I hope you have a bit of fun Friday with the wigs, have you taken the plunge & cut it all off yet? That in itself is a big step. 

My last chemo was 25 Jan but this time round has been really tough for me, side effects feel more intense and tiredness levels have doubled. I also have developed shingles and a wee infection, so on even more meds to add to everything else. It has tested my resolve for sure but finally today I feel a little better so I hope I get to have a weeks reprieve before the next. Doesnt mean you will follow suit though. I do think my avastin carries many of the side effects. 

I just want to get the third done and have my next CT scan to show if my huge tumour is shrinking. It will be a huge moment as it means they can operate & get it out of me! I can feel it and want it gone.

I agree its so good to have someone to talk to and very happy to chat ongoing. Just dont want you to worry unnecessarily you will experience the same, we are all so different! 

Take care xx

Evening & great to hear from you.

So pleased you got through your 1st round ok, and are setting yourself small goals every day. It definitely helps even if its just the distraction for a short while. Its interesting I have Avastin targeted therapy WITH my chemo? I've yet to hear of anyone else having this combo.. 

I hope you have a bit of fun Friday with the wigs, have you taken the plunge & cut it all off yet? That in itself is a big step. 

My last chemo was 25 Jan but this time round has been really tough for me, side effects feel more intense and tiredness levels have doubled. I also have developed shingles and a wee infection, so on even more meds to add to everything else. It has tested my resolve for sure but finally today I feel a little better so I hope I get to have a weeks reprieve before the next. Doesnt mean you will follow suit though. I do think my avastin carries many of the side effects. 

I just want to get the third done and have my next CT scan to show if my huge tumour is shrinking. It will be a huge moment as it means they can operate & get it out of me! I can feel it and want it gone.

I agree its so good to have someone to talk to and very happy to chat ongoing. Just dont want you to worry unnecessarily you will experience the same, we are all so different! 

Take care xx