Don't know what to do

[1916]

Morning ladies

Haven't been to good for a few weeks trapped wind and very tired later in the day. I have been on Anastozole about 8wks thought it might be that.

But they have asked me to go in a week early I know something is wrong . That appointment is about 3weeks away the earliest they have!!.

I went to A E yesterday spent all day there they said I have fluid in my tummy it is sore ,and my liver test one had spiked so frightened now. They let me come home they said wait until you see oncologist.

Feel awful this morning don't know what to do . I did speak to specialist nurse before I went to hospital which she advised hospital. Going to ring again mon see if I can have an earlier appointment.

I have coped well with all I've had I normally keep going . I only have partial response to chemo that's the trouble.

Love to you all hope someone can help me I feel soooooo depressed that's not like me .

Annxx

[Madmolly]

Take control demand earlier appointment or get you gp to admit you to hospital loves and hugs

[1916 in reply to Madmolly]

Hi Molly

Yes I'm getting on to them as soon as

Thank you for replying

Love Annxx

[Pendle99]

There are several liver tests that can be tested for. Even though they are referred to as liver function tests (LFTs) they can be indicators of other things happening ie they are not necessarily specific for the liver and the doctors look at the overall picture. Looking at the manufacturer's info on anastrozole, hepatobilary disorders are listed as a common side effect (medicines.org.uk) plus I know various chemo agents can cause increases in your LFTs. So what I am trying to say is there are various things that could cause the LFT to rise.

I understand you are poo scared ( I am too with my own situation-similar to you with only partial response to chemo) and it is the not knowing that is the awful bit. Phone your CNS on Mon and get a plan. Tell them you cannot wait 3 weeks.

Sending you lots of love and strength to help you through this weekend.

Pen xxxx

[1916 in reply to Pendle99]

Hi Pen

Thank you for your reply , it makes me feel at least your all here for me.

I know we are similar in our diagnoses, you know Pen My Life has been pretty good the last two and a half years.

This is a horrible disease, but we fight another day .

Sending you hugs, I will let.you know as soon as.

Love Ann x

[Lyndy]

Sending you a big hug Ann...❤️. It is horrible to be left alone not knowing what is happening and over the weekend when there’s no one to ask!

Can I suggest you wrap yourself up and watch some favourite films or tv? Just get yourself through the weekend first. Then as others have said...big knickers at the ready. If you can’t get an early appointment... ring the CNS or Onc Secretary and tell them what you have just told us...this is too hard, you are scared and not coping with the wait. Very best of luck with it xx

[1916]

Thanks Lyndy

Good advice I'm such an outdoor person but I must admit no energy at all.

I will let you know how I get on, sending love.

Annxx

[JustKBO]

I would go to A and E and say you feel absolutely dreadful. Trapped wind and bloating is vile I had it last week and really sympathise.

I had a drain put in and they took off 1000ml of fluid which apparently isn’t significant however I feel much better. I’m still having gut problems but taking powder sachet gentle laxatives Helps and when my tummy gripes buscopan usually just 2/3 per day. Having said that I think there is a caution for Buscopan and liver issues so be careful with that

If A and E send you home then contact your team and say you have to see someone as an emergency. Good luck.

[1916 in reply to JustKBO]

Many thanks

Trouble is I was there all day yesterday I think because I am seeing oncologist they want to leave it up to him.

First thing Mon I'm on the phone for earlier appointment I hope.

Thank you for reply

Best wishes

Annx

[Coffee57]

Thinking of you! Really hope you get an appointment earlier. All the best.

[1916 in reply to Coffee57]

Many thanks

You are all my life line.

Best wishes

Annxx

[Iwillbeatit]

So sorry to hear that Ann ring your CNS nurse on monday they are your life line to the consultant. I had issues I posted on here and that advice was given to me and I spoke to her 3#days running and they then put me on the end of the consultants list the next week. It's a frightening path we all follow and these nurses are really our only good link to the consultant. I wish you luck keep smiling I know the exhaustion And pain takes all your energy.

[1916 in reply to Iwillbeatit]

Morning

Bless you for those kind words , I just feel like I don't want to do anything which isn't me.

All through chemo which I've had 3lines in 2 half years I was still very active even worked, I know I was lucky with that.

Good luck to you

Love Ann xx

[delia2]

Hi Ann. I can’t give advice except I agree with your plan. I just feel bad for you being so miserable on the weekend. If you’re partially platinum sensitive maybe you can get Niraparib after your next chemo or instead. I hope maybe you can find a trial. Sending hope!

[1916 in reply to delia2]

Thanks Delia

I don't meet the criteria for maintenance, I was put on Anastrozole after chemo in August because I worry when I'm not on anything.

Hopefully sort something tomorrow.

Many thanks

Annxx

[shortfriends]

Dear Ann

I am thinking of you and sending a virtual hug. I know this isn't you but this disease has forced us to change and the more we do the more oncologists and support staff will consider better approaches through learning from our experience, especially the waiting periods which cause great anxiety. They too are affected by a lack of staff and resource, and I hope they highlight this with the powers that be, so phone up complain, make a noise and remember we are all behind you and supporting you. Wishing you a speedy reply and positive outcome.

Love Pat xx

[1916]

Thank you Pat

For your reply I am going to update everybody in a minute , I was just on my way back to AE , when the Nurse rang us in the car .

Hope you are well

Love Ann xx