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.

Hope you are well x

Now my temperature is 37.7 and my O2 sats are low. At least, having sent off blood cultures last night, I don't have to have that done again.

The new medication has now arrived on the ward but now they can't give it to me because it's been prescribed for TOMORROW. You couldn't make this stuff up.

The nurse has rung the doctor's home number asking him to prescribe it now. It was the doctor who told me I could have the cannula out because I would just be on oral meds (plus one injection, but no IV) from TODAY.

What a shambles . I'm sorry and cross on your behalf, it's bloody difficult to make a fuss and be assertive when you are ill.
I defend the NHS but this is the kind of thing you hear repeatedly. Surely there must be another doctor around who can prescribe?

Also: today I finally felt strong enough to have a shower and wash my hair. The hair came out in handfuls. DH might get to wield his clippers quite soon.

I've ordered some hat/scarf things from Annabandana, in addition to the ones I already have from Macmillan. I haven't heard anything further about the wig appointment.

All pills now taken, including the new ones. Just waiting for my bedtime morphine. I haven't had any top-up morphine today. One yesterday and none on Saturday, so this has got to be good, yes?

Ah fantastic! Hooray for all the pills! That’s good about the morphine too 😊 💐

This sounds like progress ......

Definitely going home today.

Day 18 after chemo and hair is coming out in handfuls.

Gah so sorry about the hair. It’s just rude when we are going through something so serious eh? If you get a tender scalp, I can suggest the neale’s yard balm and also eucerin scalp stuff which helped me when my hair was being evicted.

glad you’re going home.

So pleased you are going home. Everything is so much easier to deal with at home.

Wishing you a successful transition home.

What an ordeal. Our lives can change so quickly can’t they? It’s almost surreal.

Thinking of you xx

So glad you're going home. Your own bed tonight will feel like the best thing ever.

Thinking of you xxx

Your own bed will be a treat.
The hair is inevitable. I think the clippers are better than the handfuls of hair.
I acquired a huge collection of hats. If you search "Muslim" hats you find a whole world of interesting hats, not hijabs, just pull on hats. I had some gorgeous velvet ones.
Definitely worth pursuing the wig for the odd occasion you want to go out out though I found them too hot and uncomfortable for everyday.

So glad you are going home.

Glad you're going home to your own bed and your own sheets. X

That's interesting - I'll have a look. I'm only likely to wear a wig for special occasions. I do have a couple of hijabs somewhere from when I went to Saudi and was planning to try those but velvet hats sound lovely!

I’m with you @Ohjoyohbliss it happened to me too. When you find a nice new velvet hat, let me know. Im bored of mine!

Wishing you a happy home coming ❤️

You couldn't make this stuff up...
I mentioned to the doctor that I haven't had details of where & when to go for my chemo on Friday (being done as an outpatient at Dewsbury.) He went to check and IT HAS NOT BEEN BOOKED!!! Furthermore, Dewsbury now has no room on Friday.

If I hadn't picked up the infection and been readmitted here, I would have had no idea. I would have turned up at Dewsbury expecting to have chemo, only to be told "You're not on the list, you're not coming in."

That’s absolutely awful! I know not for now but I really hope you make a complaint at some point, your care has been so lacking

The whole communication thing in the NHS is dreadful ... always was. I have no idea what can be done about it. It causes so much anguish.
I so hope that a new appointment will happen very soon. Take care.

Oh for crying out loud @Ohjoyohbliss! That’s appalling, but sadly not surprising.

The cocks ups you get to witness when you become a frequent flyer in the NHS are boggling. It’s frustrating that at the most vulnerable time of your life when you least feel like it, you have to become your own biggest advocate and an all round pain in the arse to keep things on track. It feels churlish when you know people are doing their best but you need them to be on top of things. Unleash your inner micro manager!

As a one-off, they have arranged for me to come back here (Pinderfields) to have it. They don't do outpatient chemo here, so that means they have to save my bed for me, although I can still go home for the intervening couple of days.

They have booked session 3 at Dewsbury in October.

@Over40Overdating unfortunately I am also a frequent flyer. I keep contemporaneous notes of every appointment or conversation with HCPs. Comes in useful down the line when you need to recall what happened at previous appointments.

Well at least they've managed to resolve it meantime, but the communication is just awful. Glad you can at least go home today and be in your own space though. I hope the vomiting and nauesa has subsided.