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.

Morning.

Things have progressed again. Yesterday I had day surgery for paracentesis. This was the most physically painful thing I have experienced since childbirth! I just was not prepared for how intense it was going to be...emotionally too. They drained over 3 litres off and after the drain was removed I did feel a sense of relief.

The clinic have cancelled the MRI as they saw what they needed to on the CT scan from Sunday. I will find out more tomorrow when I go to see the specialist. I have been told by the nurse to expect an endometrial biopsy procedure at the appointment. 

I have been told a request has been made for a biopsy by radiology too...more day surgery ahead.

My son is still feeling poorly and he is a generally strong and healthy lad...I believe he is absorbing the stress of the situation no matter how carefully we handle it. He's off school today as I decided to let him have a day curled up on sofa and have some 'Mumming' to let him know I'm still holding him safe. He's just had a boiled egg and toasty soldiers like when he was younger. I think he needs this care.

My partner is being amazingly supportive both practically and emotionally but feelings are running high for us all right now.

That's it for today, let's see what happens next!x

I don;t have any wise words to offer I'm afraid. However, what I can say is that I know, from experience, that it does help to post on here. People read and send support. I feel for you, your son and your partner and wish you good luck for tomorrow.

One day at a time.

Thank you for your kind words Mary. 

I am finding the forum a useful outlet for sure.

Since I last posted I have had numerous calls from the hospital saying things have changed for tomorrow. I am getting used to this 'one day at a time' mentality now.

I am still waiting for the definite plan to he confirmed! Que sera sera! X

Any news today?

Morning Mary,

Yes, well things keep evolving as I said... Ì'm due back into day surgery this afternoon to have a biopsy of the abnormalities seen on the scans. So I'm back into theatre for another needle in my tummy. It's the same team that drained me on Monday!

Then later I am going to meet one of the specialist gynae consultants for the endometrial biopsy. So a busy afternoon ahead but hopefully they will then have all the info they need to make a diagnosis and treatment plan sooner rather than later.

I am dreading the ascites building back up...after being drained I was 6lbs lighter! I'm much more comfortable not being overloaded with the fluid as well as everything else going on in the background.

I still have very little appetite but I'm making myself eat protein rich meals little and often whilst drinking lots of water to stay hydrated. It's been difficult with all the bloating from the ascites.

My son is still feeling a bit wobbly but he went back to school today which hopefully will keep his mind busy.

I'm doing my best to keep the best positive attitude I can but it is still very overwhelming not knowing just what the not so distant future holds...every day is a step closer.

X

I am so glad you are still posting here and talking to us. Be positive was said to me.

The not knowing is more than very stressful. Keep your chin up. We are here.

How are you today?

I'm ticking over thank you for asking.

Yesterday I had the 2 biopsies...not very pleasant experiences but necessary. The gynae team are waiting on the results of these to determine the exact diagnosis/ treatment plan. I have been told to expect an ovarian cancer diagnosis with chemo as first plan of treatment. 

I have a week or 2 to wait for this news officially now.

It's a lot to deal with but I have been expecting this news since the first blood test raised the alarm.

X

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.

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. :-/

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?