Hello
My sister had her first carbo/caelyx last Tuesday then on Friday had 9 litres of fluid drained. She got out of hospital today. She still feels really yucky and totally exhausted. Can the chemo cause this? It will almost be a week since she had it. I’m so grateful for this forum I think I would go mad without it.
The draining affects your metabolism and you can feel very tired after it. Add the chemo to that and it's not surprising that she is exhausted. 'Listen to your body' is the name of the game - take rest if your body craves it.
I’ve never been drained but chemo certainly causes exhaustion. It is important to listen to what your body is telling you. If you need to spend time doing nothing or next to nothing, then do so. I think it was Quentin Crisp who said house dust doesn’t get any worse after four years and it won’t be anything like that long. Your sister should not feel shy of asking for help, many would love to feel useful doing some shopping or cooking a meal or just making a pot of tea and chatting. She should try and get outside if only for 10 mins in the garden. Fresh air is strangely invigorating, even if it’s raining. But otherwise rest when needed and not to feel guilty.
Please dont apologise & ask allthe questions you need to!!
I cant speak to the effects of drain, but chemo alone affects everyone differently and can last for a while.
Its a good idea to keep a simple diary so your sister can get a feel for her own rhythm.
If there are concerns, dont hesitate to call the unit (take temperature daily)
Staying hydrated and moving as much as is possible helps, especially outside (even if its round the garden or to the end of the street) but dont push this too much, sometimes its best to just rest without fear or guilt!
Wishing you and your sister hope & strength, Sx
Hi Steph
I always used to think of a slow nose dive after chemo which would see me at my worst between 5 and 7 days in. Then I would gradually feel better for a bit...tho most at risk of infection in week two...then lovely recovery week and repeat.Once you get the hang of it you can plan something nice for week 3. Does that make sense? xx L
Hi
Yes agree with the other posts it takes time to get into a pattern with the chemo and can be tiring on its own without the drain . 9 litres is so much and her body will take time to adjust . I had 5 litres drained a couple of times before chemo started and although I felt relief from the pain of the ascities it was also exhausting . Think they also mentioned you have to be careful with the drain that you don’t get dehydrated. Think I remember having to go on a drip which seems contradictory.
Has she been given build up drinks to help replace body salts etc as I think I remember you mentioning your sister hadn’t been eating probably for some time so she will need building up gently
Gentle walks even around the bedroom or in the garden and lots of water also help with the chemo . Make sure you keep her CNS informed if still concerned .
Love and best wishes and hope she starts to feel more comfortable soon .
Love Kim x💜
Steph, Humans are about 62% or 40 liters of water. Dehydration has a profoundly negative affect on the body. Your sister, ironically, may be dehydrated. Hydration is not just water. It requires electrolytes such as potassium, sodium, magnesium. Consult with doctor to find the best one for sister.
I for one am one of those people who gets really knocked back from chemo.
I get truly faint and shakey on my feet, so I do not attend to do more than walk to the Loo and back. And I have been known to collapse to the ground before reaching my bed, so we are really careful now.
I try to move around in bed, and do simple leg excercisis, but I plan to join an understanding gym when this is over.
Hopefully, your sister can eat and drink enough to get her through this 1st Chemo and the next will be the same, but it should work to kill the cancer and stop the Ascites, so even if she is weak and faint, she will be able to eat and breathe again.
Good luck to you both,
Laura
I had fluid drained 2 years ago. My legs felt very week and wobbly and I felt weak for about 2 weeks afterwards. The consultant told me we loose protein in the fluid which can cause muscle weakness. Morag
Chemo is tiring so a drain has to be doubly exhausting. So its okay for your sister to feel tired, she will perk up and be able for the the next chemo, that is how it goes. I don't have experience of a drain but it cant be pleasant
As the others have said chemo does cause enormous fatigue in most women. I had 8litres of fluid removed before chemo 7years ago . It made me more comfortable but I did realize that I had not eaten properly before that as I got my appetite back. Maybe your sister is weak and tired from not eating properly for a while. I’m just speculating based on my own experience. I hope she feels better soon and the other ladies have given very good advice on how to make the best of her good one week in three. It’s a pattern she will get used to and you can count down each chemo completed as an achievement and a means to an end . Best wishes to her
XXX💚💕
Hi, Yes chemo a can differently exhaust you I found this hard to except as I was always so active in the house and garden, I found it hard to make a bed, it took me all day to Vacuum
I had to lay down arfter each room I was determent to finish.
She will have to be kind to herself and except help her concern is now to look arfter her health.
She could talk to her team I have steroids at chemo and was give 3 to take home in those 3 days tried to do my house work before it wore off.
Best wishes to you both Lorraine xx
Thanks for all your replies it really helps. My sister got home on Monday but has been in bed since with no energy and still not eating. I’m hoping she will pick up soon
Hi Steph, I remember a friend who had no appetite post chemo saying she had little bowls of high energy things to nibble (very little but often was her motto) - I think she favoured jelly beans and cheese cubes! There are also the nutritional drinks eg Fortisip to consider or if you have a look on the Penny Brohn site they have excellent nutritional advice including recipies for nutritionally rich soups / smoothies etc.
As others have said then hydration is really important, is your sister drinking plenty? It may be worth your sister and you considering seeking some advice or support as to how best to help your sister recover,- perhaps either her GP, CNS or chemo unit or alternatively do consider contacting OvacomeSupport (see the Ovacome website for freephone number), they have so much knowledge and experience and are there not just for women affected by OvCa but also those closest.
I know from your previous posts that your sister has had a long period before this chemo / drain of not being able to eat and being exhausted and so it may be that some additional nutritional/medical support is needed but I say that as someone with no medical knowledge at all.... just concern
Best wishes, Sx
Hello Steph
Just to let you know I've direct messaged you. Also, as Sunfleury says, please do ring me on 0800 008 7054 if you want to talk.
Best wishes
Anna
Ovacome Support Service Manager
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