I phoned my CNS today and told her about my bloated tummy and rising CA125 etc.
She’s going to try and get me a bed and get me in for draining. I hope they can do it today as I’ve had enough of being worn out and being sick. My tummy is big. Can just about see my toes when I look down. Usually I can see my knickers.
Thinking of you all and hope you are all doing ok xxxx
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Suzanne333
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Hope you get a bed today and get sorted it sounds so uncomfortable hopefully after the drain you will get some relief, Would the hernia cause inflammation that is rising the CA 125s. Best wishes Clare
I hope they can get you in today too Suzanne and hopefully draining the fluids will help. I imagine the vomiting isn’t helping your CA125 level if it’s causing inflammation in your oesophagus and the hernia certainly isn’t helping. Big hugs and love and fingers crossed they’ll be able to make your feet visible again for you and you feel less nauseous very soon. ❤️Xx Jane
So now I have 'knickers seeing' envy... thanks for that .
Hope the drain happens soon and you feel better for it. Maybe even with a bit of an increased appetite and ability to stomach food. If the ca125 goes down on top of that, hey bonus. Fingers crossed, Suzanne. hugs, Maus
Thank you Maus. They’re doing it tomorrow morning but I’m going in at 5 tonight to secure the bed. Hope I don’t snore. Just looking forward to getting some relief and being able to eat again
Hi my dear friend, I hope you get a bed soon. How was your infusion last Monday? Sending you virtual hugs . Get well so we can have that lunch soon. Xxxx
Hi Suzanne, hope you've been drained and can now see your knickers. It's horrible feeling sick all the time. Get some rest and let us know how you get on. Thinking of you.
Hi Zena. I phoned the ward to confirm my bed and they said they’re full. I’m going to hospital today for ultrasound so hopefully they can do me today. Xxxxxx
Hi lovely. I hope you get your drain done today. You sound so fed up with it. Is A going with you? You need a good prop and lots of hugs. Big love as always xxxxx
So pleased that you won't be on your own. If a hug doesn't seem like it's going to be spontaneous then there's no shame in asking for one. Some men need hints and tips. I'm a bit brighter today as just had my first hycamtim. Very quick. In and out in 2 hours + They have said no nausea but given me something just in case. No more Emend or steroids but the best is that I can go in the sunshine if I've got a good factor on me. They have given me some anti-skin cancer cream to try. It's now a waiting game to see if my hair falls out - I've got a 30% chance that it does. Next Thursday for the next dose so let's see how it all goes. The anaemia is slightly better but not up to the norm yet. Leg cramps not so often but got bruises everywhere. Nasty one on the arm where the blood test was done on Tuesday and it's growing. Looks like I'm bleeding under the skin. Showed nurse and she said "Oooooh". Very helpful that was. It's pretty though. Sort of dark purple in the middle with a lighter purple outer layer and a yellow halo with a hint of green. I think the yellow is a sign it's on the way out.
Onward and upward and I hope you are feeling a bit more like your old self this eve. Big love xxxxxxxxxxxxxxxx
Hi Suzanne. I hope you are feeling better today too. Are you? I don't feel sick or anything and I'm looking at the Emend and trying not to take it - just in case - but I've got the other things I was given. Nausea is my biggest hate. I've been trying to find out about Hycamtin (Topotecan) but it's very old hat now. Years ago a few of the girls were on it with varying results. I'm near the bottom of the barrel stage I think. Still, we'll see. It's either total hair loss or thinning for 30% of people. I've changed my shampoo for one made by superglue. They say it prevents hair loss. Just need to find some way of ungluing my fingers from my scalp and I'm all set.
Got a busy day today and art this p.m. so my brain will be otherwise occupied but it's so hot here. Last night was virtually impossible to sleep so I had to resort to a sleeping pill. Now I'll be dopey all day. I do get a bit paranoid that the creeping night crawlies will find a way into my orafices while I slumber so I suffer a sheet over me. Too vivid an imagination obviously. I keep telling hubby he'll be stung on his sausage one night if he keeps it hanging about but he doesn't care. "Every little helps", he says.
You have a good day too and I hope the sun is shining where you are. We are desperate for rain so if you have any spare it would be most welcome. It's already 27 in the house!! I have just given a bucket of water to one of the shrubs as it's almost totally yellow but I have an acre garden so it will have to stay as it is unfortunately. Glad I don't live further south now.
Your message made me laugh. Love the superglue shampoo. 😂😂 can envisage your hands stick to your head. Really made me chuckle.
I too have a fear of creepy crawlies making their way into my body by whatever means possible. Your husband is brave to sleep how he does. It is difficult sleeping in this heat.
I was nodding off last night and the nurses woke me to give me paracetamol and an injection in my tummy, oh and to put the all inclusive wrist band on me.
I understand your concern of nausea. There’s nothing worse. It’s a bloody horrible feeling. It really is.
I hope you manage to have a good day today. Enjoy your art this afternoon. Hopefully it will take your mind off things.
Don't you just love it when you are just nodding off and a nurse wakes you up. I can never fathom why we are woken up at 6am and then left for an hour until breakfast arrives. I never knew quite what to do for that hour. Go back to sleep, sit up and read, rearrange the room...... Stupid. xxxxxxxxxxxxxxx
Have you had your drain yet? I really feel for you it must be so uncomfortable. I sat with someone on my ward who was admitted and waited three days for her drain. I learned a lot more about OC then.
Sending you much love and hope you are okay
I wish I could look down and see my knickers. My body looks like the Peak District, with a few troughs but mainly hills. Hernia mountain and steroid bloat lol
I’m in hospital now. Been here since yesterday afternoon. Feel better now that horrible fluid has gone. I will go home today and hopefully can start eating now.
How are you? I read your post about letrozole but I don’t know anything about that. I hope you get answers to your questions.
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