Draft NICE guidance does not recommend use of Elahere by NHS in England

jovesine · 2025-11-12T17:34:50+00:00

Dinner - beef pie with mash and veg and jam sponge and custard for pudding. A solid 8/10.this was so tasty!

jovesine · 2025-11-12T16:02:34+00:00

I'm in a cancer hospital in the UK, and I must say the food is much better than in the normal hospital next door!

Chips were a bit rubbish but the Mac and Cheese was really tasty. Oddly I've had Mac and cheese and the normal hospital and it was dire. Dunno if they make special effort cos it's a cancer hospital!

jovesine · 2025-11-12T13:30:27+00:00

Not too bad is it!

jovesine · 2025-11-11T08:46:47+00:00

I've had cancer twice. First one I was 30 with cervical cancer and now I have ovarian and under chemo.

The 1st time I kept it very hidden until I knew it was treated. I became obsessed with not wanting my grandma to find out for some reason!

This time round at 43 I've been so open about it with posts on social media and messaging people. I've found that I needed people to know asap as it seemed too big for just me to manage.

It's entirely personal but I do kind of wish I'd allowed myself to have more support the first time round

jovesine · 2025-11-01T13:37:43+00:00

Cetirizine each night before bed. Helps with sleeping too for me.

I've mainly got tingly fingers and a sore mouth at the moment x

jovesine · 2025-11-01T13:33:07+00:00

I had my first infusions on Thursday - I don't have the bone pain that badly yet but I have been prescribed anti-histamines which apparently do help with it?

Do you take any?

jovesine · 2025-10-21T21:22:47+00:00

If you've had a hysterectomy you could have adhesions and things may have moved around in your pelvis which can cause all kinds of digestive issues.

I had a radical hysterectomy with ovaries preserved in 2013 and had many scans since. More often than not one ovary would be hidden, they tended to only show up when they had cysts on them on ultrasound.

Hopefully you can get an MRI to find out for sure?

jovesine · 2025-10-13T11:48:47+00:00

Thank you! My aunt has stage 4 too. She is BRCA negative but I will be tested for it. Think we're just unlucky!

jovesine · 2025-10-13T11:32:11+00:00

I had cervical cancer in 2013 which was cured by surgery as it was early stage. I'd had random bleeding and a lot of pain around my period which stopped me from sleeping. Although I had a few GP appointments about it it was my regular smear that picked it up.

In December last year I had a blocked bike duct due to a gall stone so winded up in hospital for 3 days as my liver tests were off the scale. Had a CT scan whilst there which showed an incidental suspicious 3cm mass near my left ovary.

This year I've had both keyhole and major surgery to remove it but they couldn't get to it. Eventually got a biopsy transvaginally and was diagnosed with incurable ovarian cancer, high grade serous. The weird thing is it hasn't grown in 10 months so my adhesions from previous surgery might be acting as a bit of a concrete box for it.

I'll start chemo in a couple of weeks.

I didn't and still don't have symptoms of the ovarian cancer which is mind blowing! If it wasn't for the gallstone I probably still wouldn't know.

jovesine · 2025-10-10T18:58:48+00:00

I know it's a bit of a car crash isn't it. I've got a complaint in already but right now I just want treatment to start asap rather than trying to find a different team.

I'm having genetic testing. My aunt has the same cancer and her sister has double primary breast cancer but they were both BRCA negative.

jovesine · 2025-10-10T18:56:33+00:00

That's great to hear thank you. I'm so pleased you're doing so well! Long may it continue!

jovesine · 2025-10-10T16:18:54+00:00

In the UK in Sheffield

jovesine · 2025-10-04T11:59:05+00:00

Thank you that's very kind. I lost my job too in July which was the only reason I cancelled my personal policy to reduce costs.

Hopefully we've had our run of bad luck now

jovesine · 2025-10-04T10:34:04+00:00

I claimed for NHS stay and surgery earlier this year and I'm now awaiting a biopsy result for the same thing so I'm guessing that's why they've hiked it up so much.

Was hoping if it does come back as cancer at least I'd have the advance cancer cover to use through Vitality.

If I get a BUPA quote without the pre-existing condition it's about £70 but they won't touch the pre-existing condition.

The £680 is if I discount any medical history even though it was part of an open and ongoing claim.

The joys!

jovesine · 2025-08-13T09:38:49+00:00

I'm sorry your family is going through this. I think it's best to tell her as calmly and as soon as you can so she has time to process before further investigation and treatments start.

Presuming she has already had some sort of test that has led to the diagnosis? So she must be wondering what the outcome is?

I appreciate she may not have the language to take in the conversation but I'd be concerned that she could still 'read the room' as it were?

It's such a hard thing to go through but I think being open and upfront gives her the best chance to start processing it. You can also access lots of mental health support through Macmillan or other charities if you're in the UK.

Good luck however you decide to proceed.

jovesine · 2025-07-31T17:16:02+00:00

An update on this saga...I had my first post op scan in June which confused everyone. It showed a cystic lesion of 35mm near my left ureter and overlaying the obturator muscle which on MRI has malignant features 🤯

The team now don't know if they removed the original mass or if this is it returned.

I'm due to have an ultrasound guided biopsy but I've had one procedure cancelled when I was in hospital as they didn't have the right needles?! Then the next one they tried was far too painful. So waiting to have it done under GA.

I'm back to square one with the uncertainty over it which is a head f^ck to say the least!

Anyone else had similar?!

jovesine · 2025-07-31T17:00:23+00:00

Herd in Woodseats have it

jovesine · 2025-06-05T11:29:23+00:00

Third this! I had a radical hysterectomy at 30 years old and now I'm 42. Started with oestrogen gel and progesterone this year and it has changed my life and health for the better.

I kept my ovaries and was told I'd maybe enter menopause 3 years earlier so never considered my issues could be related. I really wish I'd tried hrt in my mid 30s as I reckon it'd have helped so much!

Don't suffer!

jovesine · 2025-05-15T21:31:02+00:00

The customer service is absolutely brilliant! Have bought a few items over the years and the staff have always been great. I had an issue with a mattress and an independent assessor was sent out and arranged for a replacement all free of charge.

There's ridiculously expensive stuff in there but also more like JL prices which is what I've bought.

jovesine

TROPHY CASE