Hi Llubl1972

I am very sorry to hear of your diagnosis, this must be a very difficult time for you all. I don't normal post or respond to posts on this forum, but i felt in this case i could offer some advice as my situation is very similar to your husbands. My wife was diagnosed with ovarian cancer at Christmas 3 years ago although not clear cell. we also have 2 children a girl aged 12 & boy aged 15 at the time of diagnosis, so not to dissimilar to your situation. My wife underwent surgery and chemotherapy and had a year cancer free before it regrettably returned, but further surgery and chemo has meant although now incurable she has been cancer free for the past year and her condition is being managed well with her maintenance drug Niraparib and she is doing very well and has been back working full time for about 6 months. 

Although my wife is currently in a good place it has not been without its ups and downs to get to this point. I am sure you are already finding your treatment hard mentally and physically and your husband and son are doing their utmost to support you through this. Although it must be extremely difficult for you, you are right to worry about your husband and son, it is unbelievably hard to watch someone you love go through this. My wife often feels guilty for what she says she is putting the family through, it's a natural feeling to have. I personally have found caring for my wife and children and trying to work exhausting mentally and physically (i am a hands on Dad so the child care is not an added task), i am only just finding my feet again since my wife's last diagnosis a year and a half ago. For much of the past 2/3 years i have felt like a single parent whilst caring for my wife and its not easy, and shouldn't be overlooked. Our children have also suffered being at a difficult age with GCSEs and A levels etc as well as watching their mum go through treatment.

I am sure you have a very strong support network with family and friends as well as your medical support, but your husband and son will need support also. I would strongly suggest you, with your husband contact many of the support organisation that are out there such as Maggie's or even your local hospice (they offer great support, its not just about end of life). As good as talking to family and friends is these organisations give you the opportunity to open up and let out feelings your husband may not want to share with people closer to him, it has helped me beyond belief. They also offer help to children and i would say its very important for your son as he, if like mine doesn't want to talk and doesn't appear to give much away emotionally. You should also contact his school their pastoral care team should have something in place for this very situation and should be able to offer additional support. Our local hospice has links with many of our local schools and are able to speak to children within school, something my daughter has found very useful. My son has been more reluctant to engage with support but is now starting too. You may also find the additional support useful, as my wife has.

My final advise is call all and every organisation that offers support, many take time to get you in their system so accept support from everyone that offers. They won't all be right for your family but by using the splatter gun affect some with stick and it will help. Above all speak to your sons school, he won't be the only child who's parent is going through this so there will be support on offer even if its through a third party organisation.

I am sorry i didn't mean to write so much, but i hope you find it useful.

I wish you well with your treatment in the new year.

Patrick

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

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