Hello Peanut246

I'm sorry to hear about all that you've been going through recently. Hopefully, having the fluid drained will bring you some physical comfort whilst you wait for the CT scan and the next steps regarding a treatment plan. 

It's understandable that you're feeling overwhelmed by things and that you're concerned about what will happen. I know that for many people this period of waiting for additional tests and results can be difficult and it's natural to have lots of questions, concerns and even fears. It can often help to talk with someone about those things and how you're feeling. It might be useful to chat things through with one of our nurses, who I know will be happy to listen and offer any advice, information and support they can. If you'd like to chat with them, they're available Monday to Friday 9am to 5pm on 0808 800 4040. You might also like to have a look at this thread about waiting for news, which has some tips and advice that might help you cope. 

Keep in touch Peanut246 and let us know how you're getting on. We're here for you. 

Sending my best wishes, 
Jenn
Cancer Chat moderator 

Thank you for your response and advice. It feels like such a lonely and long time waiting to find out exactly what is going on. 

The ascites are so uncomfortable, I cannot sit up now, my tummy looks like a full term pregnancy and its happened so quickly over the last week or so.

I'm off to see my GP today so hope I get some support there. Since this started I have not seen my GP. I was originally examined by an out of hours iGP in a different practice, I have had phone calls with my GP and been seen at hospital. I have felt unseen by my GP... but a call to 111 when I reached breaking point in the early hours of today has meant they have finally given me a face- to- face appointment  I know the NHS is under pressure but why do I feel like an inconvenience to them?

Thanks for being there.

It's been a while since I posted an update.

I had the CT scan later that day and went home from hospital, then went back into hospital the next day for paracentesis...this was extremely uncomfortable and I had morphine for the first time in my life when the anaesthetic was wearing off. They successfully drained over 3litres of fluid from my abdomen which was such a relief..

The next day I was told they wanted to do 2 more biopsies the following day. One was back in day surgery for a needle in my tummy to get a sample from a mass. The other was in clinic for endometrial biopsy. So that was another tough day.

I am still waiting for the details but they have confirmed cancer cells are present. The team are waiting on the full biopsy report from the mass.

Later today I am back in clinic for a hysteroscopy which I can't say I'm looking forward to. I know they are doing everything they can to work out the best treatment plan for me, but I am exhausted both physically and mentally. 

Eating and drinking has become a chore as I have no appetite. I don't sleep for more than 3hours in an 24hr period.

I'm on medication to stop bleeding and the risk of anaemia. This medication has side effects of headaches and mood swings...that is me right now.

I am doing my best to get through the limbo between finding a problem and starting treatment.  My head goes to quite dark places overthinking every eventuality. I am supported well though and hopefully things will turn a corner soon. X

What an update. You have been through a tough time.

I hope that things will turn a corner soon.

Thank you Mary.

I had the hysteroscopy. It was bearable with entonox and pre-emptive painkillers.

I go back tomorrow to see the specialist after their MDT review. The nurses have already told me some of the biopsy results and confirmed that High Grade Serous Ovarian Cancer is present. So what I thought has now been confirmed. The last biopsy is to check for any secondary endometrial cancer too.

Tomorrow I should know the stage and hopefully when the treatment can begin.

Later in the week I am going to be assessed for paracentesis(drainage) again as the fluid seems to be returning. If they see enough I will get that done too.

My appetite is extremely poor but I make myself eat every day regularly. I've started carrying glucose tablets in my pocket when I go out just in case I need a quick boost. My BP sometimes goes a bit low because of everything going on, the nurse has advised on how to manage that.

Mental health wise, it is so hard to feel like I'm not living with a death sentence hanging over me. I'm sure I will feel better when treatment starts. Statistical odds do not look good for HGSOC but I have to believe in my case being individual and fighting with all I have.

Until next time.. x

You are going through an awful lot to cope with. Although it is hard for them too, it is good that you have family to support you. What did the specialist say?

It was so deflating. I went to the appointment on Monday to be told they need the final biopsy results from hysteroscopy to give the go ahead on treatment plan. So now I have to wait until next week. The cancer they see they have graded it stage 3.

My appointment for fluid drainage has been pushed back 24hrs so I'm stuck waiting for that on Friday now feeling like a balloon ready to burst. They said I could go to A&E if I really need it sooner.

I'm going to the hospital support centre today to talk about head coverings/ wigs in anticipation of losing my hair to chemo in the not so distant future.

Not a very positive update today.

The waiting is the most awful thing. I do reach across the internet to give my support.

Any news this week?

Well yes. They have confirmed only HGSOC is present. I meet the oncologist next week. Chemo hopefully starting before end of the month. Major abdominal surgery planned for mid chemo cycles. It is all moving forward but I am exhausted. I had another 3 litres drained last week but it is building again.

I don't sleep well and haven't for 6weeks now.

It's so hard to be positive. My partner is struggling with it all too. Everything is overwhelming. 

It is overwhelming, I do understand. How did you get on with the oncologist?

Start chemo in the new year. I am feeling a bit calmer that I have dates and a definite plan in place. It is all still terrifying at times but one day at a time is all I'm dealing with right now. :-/

Start chemo in the new year. I am feeling a bit calmer that I have dates and a definite plan in place. It is all still terrifying at times but one day at a time is all I'm dealing with right now. :-/

Yes, I agree about being terrifying but, as you said, there is a plan now. One day at a time is the only thing you can do. Christmas will be strange, not at all as usual, but I do wish you a happy Christmas and send best wishes for the treatment in the new year.

Has the chemo started?

Yes it has. It has been horrendous, worse than I ever could have prepared myself for. I am in a horrible situation right now and my positivity has gone. I am at rock bottom with side effects and don't know how I will survive. This is genuinely the worst time of my life and I have only had 1 cycle so far. The thought of 5 more cycles and surgery is beyond my comprehension at the moment. 

I am hoping that someone who has had chemo will reply. I haven't so cannot understand it, but I do send my support.

Thank you Mary. I am day 7 post chemo and seem to be turning a corner slowly thankfully. The last week has been awful and I was at a very low point when I last posted. Day by day is the only way I can get through these challenges. I am lucky to have such a supportive partner to look after me and the household whilst I have been incapacitated due to pain or fatigue. 

I’ve been reading your posts with interest.  I have stage 4 ovarian cancer.I'm 79 years old and was diagnosed in September 2024.   

I recognise your despair, and overwhelming feelings, as well as that first week to 10 days  after chemo as being the worst. Also the relief after ascites being drained.   I have found that the tiredness is the most overwhelming  effect, with a nauseous feeling for much of the time. And bowels that are not consistent! 
However, I’m still here, just having respite from chemotherapy, next due  Jan 16th.

so, on we all go.   Please let yourself be hopeful, I was in the same place as yourself but I have made some progress.    When I look back to the beginning of my treatment and compare it to now, I can see that improvement.
I too have good family support.  Husband and daughters who look out for me. 
try to rest as much as you can,  I wish you every bit of success with your treatment. 

Thank you,  Rose-w, for understanding what I could not understand.

Thank you Rose-w for your message. This is a rollercoaster of physical endurance and emotional ups and downs. One day I feel like I cannot go on and the next I feel hopeful that I may reach a point where cancer is not controlling every minute of my existence.

A lot of this has been down to side effects, pain, discomfort and sometimes relief but then different side effects happen and I am learning about how the chemo is affecting me personally as each day of this 1st cycle passes. Today is the first day ( day 8 post chemo) that I have not been in pain of some sort throughout and I managed a school run, some dishes and a quick whizz around with the vacuum. After that I have collapsed on the sofa with Netflix feeling quite pleased with myself!

I hope that in subsequent cycles of chemo that I cope with it all a bit better because this first round felt brutal. 

I miss being able to do the things I enjoy like walking my lovely dog. I wouldn't last 5mins out with him at the moment but maybe next week?! I played 3 rounds of cards with my son at the weekend and I needed a rest after because my brain just gave up! I never understood real fatigue until now. 

Thank you for posting,  it is always a positive thing when people share their experiences and make a human connection in tough times. 

I wish you all the best for the 16th,  my next is on 26th. X

Thanks so much for your good wishes.  I will try and deal with it as best I can. 
I had the routine bloods taken this morning.   I’m pretty used to the  format now ! 
another day, another needle. 
I am grateful for the teams efforts to make everyone feel comfortable, but it doesn’t take away our deepest thoughts and fears. 
it’s the things that we all used to do without thinking that are so compromised. I woukd never have believed I could feel so drained of energy.    Like you I do a job or two , then just flop.

i actually  baked a cake this morning and felt exhausted.   But at least I can offer my grandson a piece when he visits later.  

all the very best to you as you proceed on this path. 
kindest regards. 

I can fully appreciate the effort that making a cake would take whilst on treatment. But I also imagine your sense of achievement in doing it!

I am planning to make my son's birthday cake at the end of Feb and I am already working out which day will be best and when I will shop for what I need.

The little things seem so much more important now. I keep trying to reclaim whatever control I can over my day to day life that has been taken over by this cancer. It came out of nowhere for me. I actually thought I was post menopausal and going to be told I needed HRT or something. So to find out I have a life threatening cancer was a tremendous shock. I hate seeing the impact on my loved ones, as you rightly said about the worries and fears always being there.

All we can do is support each other in life and face every day as it comes. My friend sent me a note the other day that said...

Courage is not having the strength to carry on but carrying on when you have no strength.

All the best.x