Ok, I think my sister and I have burnt our bridges with our CNS, who sent us [an] email asking us not to email her but to call. We’d tried calling but know she doesn’t work at the weekend and Monday was a Bank Holiday. She said we should have called Acute Oncology, which we had done and also called 111.
At the moment, I'm worried that I've got a hernia if not several and have asked CNS about it but she hasn’t replied. I cannot get a doctor's appointment even though 111 have contacted GP surgery and told them I must have one today. The doctors won’t see anyone because of coronavirus even though I’m the one more at risk. There's a three-hour wait at local urgent care and 111 say I mustn't go there any way because of the chemo. I finally got the GP to agree to call me but it won’t be till 4 pm or so and the surgery will be shutting after that.
My PICC line is very painful most of the time and worse when I move my arm and last night my chest started to hurt as well. I can’t seem to get anyone to help me.
I tried calling [my team] but they advised me to call Acute Oncology. I asked what Acute Oncology could do and they said they might make me go up to [the hospital] in London.
Candy
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I am sorry to read that you are in pain and experiencing difficulties getting seen. You are doing the right thing by speaking to your GP and I hope that you will quickly get the advice and reassurance you need.
Though we cannot offer any clinical advice, please do call on 07503 682311 if you would like support and a listening ear.
Candy, it’s so annoying that you’re being passed around with no help. Have you tried contacting your PALS team at the hospital, they can intercede, on your behalf, when you’re not getting any answers or, and more importantly, the help you need. It’s annoying and upsetting when there seems to be a closing of ranks and you cannot get to speak with somebody who is willing to listen and give the advice and help you need, PALS will investigate for you. I also agree with Kathy, try contacting both Macmillan and our lovely team at Ovacome for further advice.
I hope you get all the answers you need speedily. Big hugs and love ❤️Xx Jane
Thanks, everyone. I was thinking Pals would be my next port of call as it looks like the nurse will not call. I've already spoken to someone there and he seemed nice. I will try that if I get nowhere with GP. Sister wants to take me to Urgent Care and I can wait outside away from people.
Did that. They said they would get a nurse to call but no one has. GP called too late for me to have an appointment but I have one for tomorrow now. I seem to spend all my time calling people who never ring back ...
Not sure if this is how I respond. Candy was admitted to hospital via a&e last night and is still undergoing tests today. So she may not react or answer messages for a bit. I'm her sister and we don't have smartphones. Our old mobiles don't work in the hospital vicinity so hard to keep in touch. But thanks everyone for your support and suggestions. xx
Hi, my God but I know a lot of what you are feeling.
I am a private patient and frankly I feel just as much as helpless as you sound.
I have not seen my consultant since February, had Zoom calls- great. Fortunately she wanted me to have as long a break as possible so I might be ready to take more chemo.
She put me on a hormone tablet which I don’t think did much.
I finally asked to go back on chemo as I have been draining my ascites at home every other day since April when I had a permanent drain fitted.
The draining has been giving me low sodium readings.
In the meantime I have moved in with my daughter and changed doctors. Haven’t met them yet!!!
But they have shown an interest in blood results sending me to A & E on two separate occasions. I have been given infusions of sodium. Then sent home to be sent in again two weeks later.?
The last time the hospital consultant told the staff to take out the the drip and only let me drink 1 half pts liquid, as the drip, draining and drinking was overloading my system and my body should cope itself.
I have felt like a rag doll dragged from one thing to another, a non person with no voice asking is it all worth it.
I have always been good at coping but now am ready to give up.
I know I have moaned but how I have been treated believe me I couldn’t make it up.
I pray and hope that you get some proper medical help. I recommend getting a relative to make some calls for you. I've been shaking and upset so many times on the phone that sometimes I simply can't do it again. My sister has taken over from me on these occasions until she is shaking and we swap around. I sometimes think you're taken more seriously if someone speaks for you, showing their concern.
I was thinking about going private - so thanks for the head's up.
Do you have a named GP at your new practice? Could try to make a telephone appointment, perhaps a double one so that you can talk through what you're going through.
But DON'T GIVE UP! Please ...
I never thought it would help me to call Macmillan but they have brilliant and can offer clinical advice and will know what you're talking about. Just a wise and sympathetic ear can make you feel a little better.
I was in hospital for three days, on an antibiotic that's supposed to be the strongest. I had an infection and cellulitis and a blood clot. This was after my first chemo session.
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Update from the weekend.
Oh hell give me a break.
Pre-Assessment day from Hell! 
Home from hospital for weekend break
On cloud nine over the weekend, Monday phone call from onc brought me down with a big bump!!!! 
