My sister Is still not any better after 1st carbo/caelyx and drain. She is still in bed not eating and so weak and tired. We are all scared and no one seems to be paying any attention just taking blood and we never hear from them. Cns nurse says it’s just cos she’s been through a lot. We are so worried but no one listens
NOT any better: My sister Is still not any better... - My Ovacome
NOT any better
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Ask to speak to the nurse who is assigned to your sister & keep persisting. Ask them to sit down & go through it with you. Linda xx 🌺❣️
Hi, so very sorry to hear this.
The CNS remit is to support the person who has OvCa and also those closest to her.
Did you manage to speak with Anna from Ovacome? If not, do please give the Ovacome support number a call or you can email if this is easier.
Macmillan also have an excellent nurse-led helpline and they might be a good way to access the support you need. They were a huge help to my partner when things were really difficult.
Thinking of you all, Sx
Hi Steph As Linda says speak with nurse and persist. If you still feel you aren't getting information that yiou need in order to understand what is going on ask to see your sister's onc. Failing that speak with the hospital patient liaison to see if they can help you to get time with someone to explain what's going on. I know the staff are always so busy that sometimes they fail to see how important it is for loved ones to have information. Sending you both a hug xx Kathy xx
Thanks for your replies. It’s good knowing I can tell you ladies what’s going on. I will keep trying to speak to someone about my sister x
Sending positive vibes to you and your sister...as others say...keep asking xx
Is your sister still in hospital or is she now at home? Either way the advise of the others to speak to the CNS and find out what is going on. She should be able to eat and you need to understand why she isn't. Maybe that's why blood is being taken to try and identify the cause, but you do need to be kept in the loop.
Do try Anna as well.
All the best for your sister and you.
Helen
Hi Helen. My sister is at home. I think they might be taking blood because her sodium levels were low in the hospital last week and they said she would need them taken again. She had a slight uti which was treated and her kidney function was “slightly off but nothing to worry about”. I’ve panicked tonight and Googled low sodium and now keep thinking she has kidney failure. But a gp and nurses have been to see her and none have mentioned this. The gp called yesterday and said they now need more blood but didn’t tell her why.
Maybe call the GP's surgery and ask for a telephone consultation so you can find out more. He seems to be in the loop and will know why more blood is required.
Hi, the ladies have given you some good advice as usual I'm sorry she is not feeling better it is important her general health improves so she can manage the treatment and yes she has been through a lot and her body need to repair it's self and this will take time.
I know it is easy to say she needs to eat and drink to help her body recover I've been there and and it's very hard to eat when you don't feel like it, I started to take protein shakes in milk or almond milk so if she can just manage to drink some it will help.
I've just finished 8 treatment of carbo/caelyx with good results.
See about talking to her oncologist again, when is her next appointment?
Can you get a phone number of the oncology clinic nurse? when I need advice I ring she always returns my call.
keep your chine up , I hope with your support she will improve.
Take care Lorraine xx
I agree with, but can’t add anything to the other replies, but wish you and your sister all the best and hope she is feeling better soon.
Best wishes, Ali x
Hi my mum had low sodium and was put on a drip in hospital then had fluid restricted to get the levels up. It's quite frightening how low sodium affects your body. I thought mum was really muddled and didn't want to eat anything.
You do need to ask for a plan as often it just feels as though the days just drift with no one making a decision.
I hope you get your sister some help. It's great she has you to fight her corner
X
I have had a few drains and it can take a lot out of you. It does take a few days to recover from drain and can leave you very tired. I also had carbo caelyx last year and it took about 4 sessions before I had results. Sx
If she'll eat ice cream anything she has to eat. Sometimes chemotherapy can be too strong. Might need a different concoction