Fatigue

Hi all, My sister is struggling with fatigue and chemo hasn't even started yet. This week she has 4 hospital appointments, 3 on one day and at 2 different hospitsls with four hours in between the 2nd and the 3rd. I am worried about how she will cope with all this, have asked my other half to act as her driver to get her between the sites as she was planning to get taxis but as she is so tired all the time I'm worried about her taking taxis on her own.

Chemo starts next week so I assume these are pre chemo tests and one of the appointments is for a CT scan presumably to get measurements which they will use to assess how the chemo is working. There is then 9 weekly blasts of chemo and reassess. If she's this tired now how is all that chemo going to affect her? Does she need to mention this to her CNS ?

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  • Your absolutely right, she does need to mention this to her CNS as there could be a number of reasons. It may be if its the cancer causing her fatigue, one or two blasts of the chemo would sort it out.

    Hospital appointments can wear out even the fittest so I wish her well having four appointments next week. At least with four hours between one of the appointments she will be saved anxiety if the earlier appointments run late. Some of the cafes / eating places in hospitals can serve quite good food these days, especially useful if her hospitals are not in an area well-served with eating places. Suggest she takes an interesting magazine and a book she can immerse herself in, incase she has to wait. Likewise your partner.

  • Hi, I know just how she feels, I was totally exhausted before surgery and chemo, there were so many hospital visits, I did 7 different hospitals in 6 weeks, sometimes repeated visits at the same hospitals on different days and some days more than one hospital in a single day so it seemed non stop. I was under so many different departments it was horrendous. In a way it was better once the chemo started as it became a regular regime at just the one hospital and all the different departments, consultations, information, surgery and questions were behind us and we knew what we were doing albeit still a tad scary.

    It can't hurt to mention her tiredness to her CNS, part of the reason I was so tired was because I was really anaemic and following two separate transfusions I felt so much better and a bit more ready for the onslaught, I'm sure her bloods are being checked but can't hurt to check. She has had so much to take on board all at once, just the shock of the cancer diagnosis knocks you for six then it's onto the rollercoaster of appointments and phone calls and letters which are all both mentally and physically exhausting.

    I think It would be easier for her if she had lifts everywhere rather than using taxis and a friendly face at the wheel in a lovely clean car rather than some of the really rather grubby taxis out there would be more comforting. You're a wonderful support to her and that support is invaluable to us all.

    I hope she starts to feel better soon once the madness settles and she gets into the new more organised routine. In the meantime try to get her to rest when she can.

    Sending you both lots of love and a big virtual hug ❤️Xx Jane

  • There is so much that takes it out of us while the testing and hospital visits are going on, it's draining and some of us get weaker and are unwell, while others feel relatively ok which is hard to take too but in a different way.

    I had my first weekly taxol (recurrence in my case) on Friday and was dropped off at the chemo unit early where I just lay on a chair and slept until it was my time to go in - nearly 3 hours later! I felt awful but was classed fit enough to go ahead.

    The drugs and the chemo have allowed me to be pain free for 2 days so far albeit still have to doze and I do have additional medicines to take, but the pain free and fatigue free state has been amazing.

    Have a word with her CNS, lifts are great too - the hospital visits seem excessive but I don't know what they're for so can't comment.

    Once chemo starts she will monitor exactly how she feels and feed that back at a the time if she feels unwell or at her meetings with her oncologist if the side effects are manageable.

    It's a hard journey

    You care and that's helping her too

    Clare xx

  • So glad the chemo is making you feel better.

  • Hi, as others have said fatigue is caused by such a range of things and is quite complex. If your sister has had a recent diagnosis and surgery then exhaustion is completely to be expected.

    Chemo-fatigue seems to affect people without rhyme or reason, so a young and relatively fit person might have worse affects than someone already struggling with their health etc. Hopefully her team can offer some suggestions and advice and this will be ongoing and responsive once the treatment begins as chemo prescription is a balance between potential benefit and potential risk.

    perhaps you & your family can support your sister as well as providing lifts etc in other ways and there is quite a lot of info online about this including major sources such as Macmillan and Maggie's. Penny Brohn have some good ideas re nutrition. There may be practical stresses that your sister would appreciate help with eg family, house, responsibilities (it is important to find out what she prefers as fatigue can affect and be affected by self-esteem and emotional well-being and stress). Getting a bit of exercise, little and often can be really helpful (though feel counter-intuitive) even if this is just wandering about the garden or walking to the end of the road especially with some good company.

    There may well be support at the hospital too such as at Maggie's (if one nearby), the Macmillan Centre or on the chemo unit holistic support options may well be avaialble.

    The idea of chemo in itself can feel overwhelming and it can be incredibly challenging for many people BUT there are so many of us who found our way through it, especially when supported by great teams and those who love us most. There's no reason to think your sister won't also do the same.

    Wishing you all hope and strength, Sx

  • If you haven't already found it, this guide by Target Ovarian Cancer is really useful, not just for the woman diagnosed but also those closest. It's available online or can be ordered for no charge.... targetovariancancer.org.uk/...

  • Thank you for your feedback. I admit I am struggling as I work full time, have 2 small dogs that require attention and live 45 miles away from my sister. My husband also works full time. My employers have been good allowing me to take annual leave at short notice but I'm worried I'm going to end up burning myself out with the stress of it all. This is making me feel guilty and selfish.

  • Please don't feel guilty or selfish-everyone wants to help and are pleased to be given something that they can do.

  • Don't feel guilty I am sure you are doing what you reasonably can. It is important for you to take care of yourself as well, as you won' t be there for her. Though chemo is wearing it should also start to deal with the cancer so she gets some energy back on the good days. I don't expect there will be so many appointments once she has started treatment.

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