Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

Oh but the second wig arrived today, which is good.

I tried to wear the first wig yesterday but then I got nauseous so ripped it off before I could be sick all over it. I would hate for that to happen when I was out.

Other news is that I've booked Covid and flu jabs for next Wednesday. Chemo is on Friday so I hope two days is enough for me to recover from any temperature the jabs give me.

I used to get annoyed when people exclaimed how well I looked - it's the steroids that do that, as if I cared about looking well rather than feeling dreadful.
Chemo just got harder and harder for me (sorry).
Message your friend and tell her you feel poorly and don't feel up to going out. I am absolutely sure she will be happy to sit and chat wherever you are.

Where are you at with your chemo? I hope it's doing the job even if you feel shit in the interim.

I have some hats.

I’m in the midst of a second line of treatment. My first didn’t work at all and the cancer actually grew whilst I was on it! This current regime has halted new growth for a bit, but it hasn't shrunk at all.

The “ looking well” comments, are frankly annoying. Is that the best people can come up with ( I ask myself!)

When is your friend coming to see you @Ohjoyohbliss

My partner gets frustrated with me too. But, we haven’t asked to be dealt this crappy hand, have we?

Oh joy - Chemo usually gets worse rather than better. It’s a cumulative effect. Each time it gets harder. You will find that this is generally what happens (obviously not everybody).

I once fainted because I could smell a cooked breakfast, which sounds quite funny now.

I do think that it’s become this sort of general popular assumption that chemo isn’t bad these days. That there’s so many drugs to help people with side effects. People can carry on working and have it on a lunchtime. And that certainly might be the case for some people. But that is so far from my experience that I can’t understand it.

Don’t feel you have to somehow show how you’re “fighting” it. Chemotherapy can take you to the brink to bring you back. I hear you. X

How are you today @Ohjoyohbliss?

Today I had Covid and flu jabs. Tomorrow is my pre-chemo check up and bloods (chemo is on Friday.) I think I'll take some paracetamol before going to the appointment, just in case the jabs raise my temperature.

How are you normally after the flu jabs? I find them hit a miss with temperatures and side effects. But you can't be too careful re the paracetamol. Plus they bloody hurt. So many bugs going around right now. I wasn't sure if dh had symptoms after his flu jab or a bug. I was a wimp and didn't go! We aren't in a risk group but are carers for ds. I should go really

My arms have been a bit sore from the jabs, but not enough to stop me sleeping on them, and I've not had a raised temperature and no other adverse effects, so that's all good.

Unfortunately DH has caught a virus, probably just a cold, but I hope I don't catch it. He had a sore throat first, a day or two coughing, then yesterday sneezing. He's been wearing a mask when around me, bless him, but I'm not sure his hand hygiene is the greatest, so I'm using anti-bac wipes, when I remember.

Had my pre-chemo assessment and bloods done yesterday. I've lost another 1kg since the last time, but that's over three weeks, so it's not too bad. It's not as if I were skinny to start with.

The thing that worried me the most was when the doc said (in response to me saying that I feel worse this time round than last cycle) that he's keen to complete the course of chemo on schedule and not delay it, because the scan showed a response, "but only a partial response."

I hadn't realised that the scan showing some shrinkage but still some active disease was such a bad sign. I thought well, I'm only half way through the treatment so that's ok. It seems as though they expect the scan to show no active disease and the remaining cycles are just for reassurance/ making certain it's all mopped up.

I've been aware from the start that it doesn't have a 100% cure rate, and that my age and the late stage of the disease by diagnosis are against me, but the doctors have always said that the treatment is with a view to a complete cure. It's always been in the back of my mind that it might not be, but now I'm struggling to put that out of my mind.

I can't talk to DH about it because it upsets him when I talk about worst case scenario.

Long time lurker here OP. I hope the completion of the course beats the bugger into proper submission. Maybe you don't see complete growth stoppage until the chemo course is pretty advanced. I think about you and another poster here on a similar journey every day, and send you my best wishes through the ether every day. F*ck cancer very much. ❤️💐

I hope you do not catch OH's bug. Well done for just keeping on keeping on .......

Is there anyone else to talk about worst case outcomes too? Maybe dh isn't the right person for that. Those closest to you will be wanting to sooth you and be positive. Or they presume that's what you need or want.

But you need to air your fears. No point in bottling them up, as once you say them out loud you can start to reason with them. I do think the negative feelings need the occasional outing. Like a little monster, set them free to run around where you can observe them and then pack them back off for a sleep in your head. It's a case of but what if? And you need to explore with someone safe to get some safe space to think things out.

Is there a cancer charity where you find a safe space to talk? It must be extremely scary and that's very valid to let your mind wonder. It's a normal healthy response and what helps us stay safe ( like worrying what will happen if you don't wait till it's safe to cross the road but risk it and run). It's instinct to fear the worse and that's OK.

You could try a bit of cbt and if it's intrusive say to yourself "but what if it's fine?" Or say to yourself "I'm only going to worry about this at 11am until miday" so then if it pops into your head you can say "I will worry at my set time, until then go away" I do this when I wake up in a panic. Not easy to do but it can help

@NotPerfectlyAdverage
I am talking to someone from the psych service, I have fortnightly telephone sessions, but the therapist is away this week so it's going to be next week instead. I get 6 sessions and I've had one so far.

@Ohjoyohbliss I think having an outlet for thoughts, feelings and big swear words, is really important. You are doing well to engage with the cancer psych services; keep it going. I’ve kind of decided it isn’t fair to dump my negative feelings on my partner, kids or parents, so I rant on a different MN thread instead. I’m not saying you should do that, but I think finding an outlet is key for people in our situation. The mind can take us to all kinds of weird and dark places and before we know it, we are down a rabbit hole which we can’t then get out of!

When is your next chemo? A partial response is good. As @possomblossomsaid, it could be that your cancer keeps on dying, long past chemo? Like you have cut off its feeding supply because it’s been blasted with poison? That’s the way I like to view it all.

Best of luck for your next chemo 🌻

The last couple of posters have phrased my thoughts much better than me as I'm pretty clunky with expressing what I think .

I get exactly what you mean about not wanting to vent/discuss etc with DH - is there a really good friend/, complete stranger / cancer forum that you could share your thoughts with ?

Im more worried since I finished my treatment - I talked to a complete stranger at Marie Curie and it helped me in that moment to say exactly what I was scared about and why without having to navigate my nearest and dearest feelings , most of the time I feel good and positive but there's a few health things that are rattling me .

Sending you the biggest and hugest hug I can and a shedload of best wishes - cancer sucks

I can highly recommend Macmillan. Just a phone call away. People who care and know and understand. Your friends and family (and most of us here) care but don't 'get' what you are going through (some of us may have been in MrJoys shoes). And Macmillan is there for him too.

Sending you energy to keep on with the chemo, wishing you a whoosh with its efficacy, and trusting you stay free of germs you don't need.

Next chemo is tomorrow.

I hope it goes okay.

Thanks. The chemo itself normally goes fine; it's the after effects that get me.

I know. Same for me. Somehow, we must weather the storm ( as they say!)

Plenty of anti sickness, whatever food you feel like ( currently on chicken and noodle soup with a mug of hot marmite and a white bread sandwich) Not my usual dinner I hasten to add!

Fingers crossed your side effects are few and far between.

Apparently I am anaemic and just on the borderline to be able to have the chemo today. Today's chemo is likely to knock it even lower, so I'll need a blood test next week to determine whether I will need a transfusion. Better not tell my JW relatives.

I knew the chemo kills all my white blood cells but didn't realise it affects the red cells too. The anaemia helps to explain the weakness, dizziness and shortness of breath I've been suffering.

Just started the long infusion, a bit later than previously, so I'm going to be here a long time.

Hi Joy, we’re here to keep you company through your long day. We can talk about your feelings or fears or we can talk about how bloody freezing it is. Or we can just be thinking of you while you do whatever you can to distract from your day.

I have to believe that chemo wouldn’t make you feel so appalling if it wasn’t working. Best wishes for today and the after effects x

@Ohjoyohbliss I do hope today's session goes well and that you can have a restful weekend, full of things that buoy you up and make you feel good. I totally get how awful it is to be feeling miserable and sick and to wonder if DH might be growing frustrated (he may be, bit it might be more at his own powerlessness to help you).
I don't know what you're able to do while attached to the infusion apparatus, and how you're feeling while it's happening. Could you listen to an audio book? There's an app called Librivox, with out of copyright books that are often intriguing. Some of the readers aren't great but there's an American reader, Elizabeth Klett, who reads Jane Austen wonderfully well. Karen Savage is also great. I'm currently listening to Klett do Persuasion for the eleventy-fifth time. Wonderful. Hugs to you 💐

@Ohjoyohbliss yes those symptoms are conducive with anaemia sadly. Chemo hits everything and personally I would have preferred an infusion prior to the next infusion. However, be guided by your team and see how it goes. How long is today’s infusion? I agree with @possomblossomin that your DH could be getting annoyed out of frustration, in the fact that he can’t help in the way that he wants and that is to take all this misery away from you. However, let’s believe that this chemo of ours, is battering these diseases into orbit!

I hope you have one two nice things planned over the weekend? I have learnt to appreciate the small pleasures in life now; a nice coffee, birdsong, a sunset, nice food on “ well days “ and so on.

We are with you.