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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

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

983 replies

Ohjoyohbliss · 29/07/2025 19:15

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.

OP posts:
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DrAmeliaShepherdMD · 23/10/2025 02:44

Thinking of you OP and hoping you’re well

chatgptsbestmate · 25/10/2025 09:13

How are things @Ohjoyohbliss

Ohjoyohbliss · 25/10/2025 10:50

Sorry for the lack of updates - there's not been a lot happening. The Akynzeo worked brilliantly and I wasn't sick for days after the chemo. I started taking my regular anti-sickness pills a few days later, but only three times a day, and the sickness came back, so now I'm back on five a day.

I spent last weekend feeling rotten - nothing specific, just generally unwell and feeling awful. I was sick a few times and spent two days in bed as I didn't have the energy to get up.

By Monday morning I felt so bad that I wanted to reschedule the scan as I didn't feel up to leaving the house; DH had to bully me into it. Got there and I threw up in the waiting room. (I had taken sick bowls with me as a precaution. )

Anyway, once that was over, the scan went OK but I don't get the results until my appointment next week.

This week I've gradually been getting better day by day, but I'm still very weak and wobbly on my feet. At hospital appointments I can't walk from the drop-off point to the clinic; DH has to get me a wheelchair.

A friend's dad offered to loan a mobility scooter. DH declined on my behalf because I need to get walking and the scooter would give me an excuse not to. I was annoyed not to be consulted, as I think it could give me some freedom and independence that I just don't have now.

I have, however, arranged to borrow a three-wheeled walking frame. It makes me feel so old! But hopefully will help.

The only other thing is that I had requested a cancer psych referral and had the preliminary session yesterday. I want an outlet to express the feelings I can't share with other people, even DH, as I don't want to burden them with my deepest, darkest thoughts. I'll have six sessions, fortnightly.

OP posts:
LilacRos · 25/10/2025 14:45

Thanks for the update Joy.
It's a long dark road for sure. Could you get DH to rescind his refusal of the scooter? You won't be permanently immobile but if it brought you a little freedom it would be worth it.
Fingers crossed the psyche is useful. Keep posting on here if it helps to offload.

Missingducks · 25/10/2025 16:46

@Ohjoyohbliss of course we trust the psych support will be of benefit - do remember you have a safe space here too
And we promise talk of vom and shits and even 'dont call me an inspiration I am just doing what I can to get through it' is all seen, thought about, and spoken of no further.

Take every offer of support you are offered ... Refine it later.

X

Enigma54 · 25/10/2025 17:02

Missingducks · 25/10/2025 16:46

@Ohjoyohbliss of course we trust the psych support will be of benefit - do remember you have a safe space here too
And we promise talk of vom and shits and even 'dont call me an inspiration I am just doing what I can to get through it' is all seen, thought about, and spoken of no further.

Take every offer of support you are offered ... Refine it later.

X

Excellently put!

Gymnopediegivesmethewillies · 26/10/2025 14:06

I second the mobility scooter, if it gets you outside and out of your own head for a bit it has to be a good thing surely? Walk when you can manage it, but it doesn’t sound like you can walk far and that can’t be doing you any good mentally.

I hope the results come back from your PET scan with good news, you’ve been so brave. I’ll be thinking of you ❤️

Mischance · 26/10/2025 19:58

I do not think that temporarily using a mobility scooter to get you out and about and raise your spirits is any problem at all! I am certain that the minute you do not need it any more you will be off and out!! Ring your friend's Dad and say Yes Please!

Azandme · 27/10/2025 12:47

Another saying definitely yes to the scooter, it will make life easier, and the ability to go for a tootle in the fresh air, weather permitting, is a very freeing thing.

Poodlelove · 27/10/2025 14:49

Thinking of you Joy and wishing you all the very best for your treatment and sending strength.
Mobility scooter would really help you I think if it is still available to you.

Ohjoyohbliss · 28/10/2025 09:06

Yesterday I had a bath.
This is going to shock and horrify most Mumsnet clean freaks, but since I came home from hospital, I haven't showered, because I can't stand up for long enough. In hospital there's a plastic chair in the shower. I didn't want to buy a nasty plastic chair for home only to throw it out when I (hopefully) get better.

I've either had a bit of a wash in the sink, while sitting on the loo lid, or I've made do with wet wipes. So a bath was quite a big thing. Getting in and out wasn't easy - I got DH to help me out - but I feel so much better for it.

OP posts:
Enigma54 · 28/10/2025 09:09

Ohjoyohbliss · 28/10/2025 09:06

Yesterday I had a bath.
This is going to shock and horrify most Mumsnet clean freaks, but since I came home from hospital, I haven't showered, because I can't stand up for long enough. In hospital there's a plastic chair in the shower. I didn't want to buy a nasty plastic chair for home only to throw it out when I (hopefully) get better.

I've either had a bit of a wash in the sink, while sitting on the loo lid, or I've made do with wet wipes. So a bath was quite a big thing. Getting in and out wasn't easy - I got DH to help me out - but I feel so much better for it.

Edited

Oh @Ohjoyohbliss I will celebrate having a bath with you. It is a MAJOR deal sitting in lovely warm water. I remember wet wiping after my hysterectomy. But a bath, there’s nothing like it!

Mischance · 28/10/2025 12:21

Ah bath!!! Such a joy!!!

Tortielady · 28/10/2025 13:38

That's terrific. It's amazing the difference a simple thing like a bath can make to your sense of well-being.

BeaLola · 28/10/2025 13:51

Oh a bath - I know how that feels after not being well enough to have one for a long time - so pleased for you Joy - you deserve it - I hope everything now starts going in the right direction after everything you've endured since you started this thread

Strollingalong · 28/10/2025 14:00

Having the strength and confidence to get in the bath, to be left to luxuriate in warm soapy water, to have a degree of autonomy can only be a much-needed boost for you Joy. I’m made up for you. x

chatgptsbestmate · 28/10/2025 14:28

Congratulations 🥰❤️🥰

Ohjoyohbliss · 28/10/2025 14:55

Results from my PET scan last week: the tumours are shrinking (yay!) but there is still evidence of active disease/cancer (boo!)

I'll have another PET scan some time after the final chemo session (December) and we really, really hope that that one will show no active disease, otherwise they will have to consider other options like radiotherapy.

OP posts:
GardenersDelight · 28/10/2025 16:55

Do you have or know anyone with plastic patio chairs as they're fine to use in a shower @Ohjoyohbliss if it'd fit

Strollingalong · 28/10/2025 17:12

The PET scan gives promise. Hold onto that. You’ve not finished the course see yet and are doing much better now.
I too had wondered about a plastic garden chair but they’re quite large, well mine are. Do you have a plastic fold flat stool you could use Joy?

Ohjoyohbliss · 29/10/2025 09:15

Another first: I have cut my own toenails! Such a small thing, but a major achievement for me.

My abdomen has been so swollen and painful that I haven't been able to bend at all, e.g. to pick something up from the floor. I remember DH having to help me put my shoes on in late July, so it's been a full three months since I could reach my feet. I tried to book a chiropodist/podiatrist, but that didn't happen because I was readmitted to hospital. DH cut my nails once (poor DH) and other than that, they grew like talons. Now they are short.

OP posts:
Boymummy2015 · 29/10/2025 10:23

Hi OP

I have just read your posts on here and didn't want to read & run. Just want to send you a gentle hug and wish you well on this horrific journey. Keep everything crossed for good news in December & as good health in the meantime as possible.

Enigma54 · 29/10/2025 10:26

Ohjoyohbliss · 29/10/2025 09:15

Another first: I have cut my own toenails! Such a small thing, but a major achievement for me.

My abdomen has been so swollen and painful that I haven't been able to bend at all, e.g. to pick something up from the floor. I remember DH having to help me put my shoes on in late July, so it's been a full three months since I could reach my feet. I tried to book a chiropodist/podiatrist, but that didn't happen because I was readmitted to hospital. DH cut my nails once (poor DH) and other than that, they grew like talons. Now they are short.

Another triumph, well done @Ohjoyohbliss It’s the small things like this, which are MAJOR achievement’s! Keep going.

DrAmeliaShepherdMD · 30/10/2025 02:36

I’m so happy to read your good news - shrinking tumours, cutting your own toenails, managing a bath! It seems like it’s all heading in a positive direction which is brilliant to read

Hoping things continue to improve for you 🙏

Ohjoyohbliss · 01/11/2025 15:12

A long day of chemo yesterday, left home at 7.30 and didn't get back until after 4.

All went well except that when I saw the doctor on Tuesday, he said that as I've been feeling a bit breathless at times, I should have an ECG when I came in on Friday. The combination of meds I'm on can cause heart damage. I asked about it yesterday and they said they don't have an ECG machine on the chemo ward, it has to be booked for a technician to come up and do it. The doctor hadn't booked it and hadn't even written it in his notes. They rang and left a message for him, but he didn't respond, so I didn't get the ECG.

I was in a reclining chair and kept my feet up for most of the day in the hope that it reduces the foot and ankle swelling post chemo. My feet ballooned after the first two treatments but weren't too bad last time.

Session 4 of 6 done. Two thirds of the way.

OP posts: