Between hope and fatigue...

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Hi all,

I hope everyone is as well as can be expected, seems trite writing that but I do mean it.

As I exist in the limbo world of between potential immuno and battling an aggressive cancer I am finding fatigue harder to manage. I would be interested in others views on own experience with this. I struggle with a full night of sleep due to the discomfort (even with pain management) and therefore finding the need for 2 hours or so during the day and not always once. For my family this can be a struggle as I am not always present mentally and not sure myself whether I should push harder or get the rest.

I am exercising (not excessively) and maintaining reasonable calorie levels (c. 2500) but will this get worse before better (if it does of course) ?

Thanks for any input.... bad day today.... 

  • Hi

    I suffer from fatigue alot lol I mentioned this to my Hospice nurse and she told me about a group that runs at my local Hospice which aims to help people deal with fatigue so may be worth asking your palliative team or CSN

    Take care

    Stu

  • Hi GeneS

    I was diagnosed with pleural mesothelomia lung cancer last Oct 23. I'm due my 11th chemo this Friday. I too am experiencing fatigue more constantly. I attend a fitness class once a week and have started swimming. If I had my way I would just like to stay in bed and sleep away! Fortunately I sleep like a log.

    I do push myself to keep going plus my dog always needs his walk. But it's not easy. I make myself eat well even when I don't feel like it.

    I don't know if it will get worse. I just keep on going till my oncologist says otherwise. But he did say When I've had enough to let him know....whatever that means. I don't ask too many questions.

    I too have good days and bad days. And am needing to rest more in the day.

    Judy

  • Thanks Judy - walking the dog remains an important tonic.

  • Hi. I also seem to be more fatigued of late but also have a neurological disorder that causes non-epileptic seizures which doesn’t help, as well as sleep apnea! I have had some well-being counselling and they talked a lot about pacing and listening to your body. I try and keep to a routine where I do some form of physical activity in the morning, when my energy levels are highest and brain-health activities later in the day. However, taking the well-being advice I take breaks and will ‘zone out’ during the day, although I don’t usually go to sleep. My family are aware and supportive of my regime, so much so I quite often get told not to overdo it!

    Push on or rest both are equally appropriate depending on how you feel on any given day.

    All the best.

    Maninbath

  • Hi GeneS, I don't believe we have chatted before, so welcome! I don't sleep at night because of pain. I already take prescribed painkillers but during the night I can't seem to get comfortable enough to get to sleep, even when I feel exhausted. I am used to it now but it wasn't easy.

    If I take all the painkillers, I would sleep but the next morning I would be a zombie and if I want to do anything the next day, it is impossible. For this reason, I don't take them every night, or I would sleep all day.

    Fatigue is bad more days than good but I have learned to live with it. I seldom sleep during the day and some nights I do get a couple of hours sleep. I do try to pace myself. If I do something one day, I try not to plan anything for the following day. Eventually on the 4th or 5th night, after sleeping for maybe two hours, I read, do a jigsaw or come here. Then after a while, usually when the sun is rising, I fall asleep again. My husband knows my routine and leaves me to sleep. Some days I'm so tired that I feel I'm dragging myself around, other days I am alright. If I feel tired, I rest (but don't sleep) if not I keep going. I think everyone finds their own way of coping! I hope you do too GeneS.

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi GeneS I sometimes have a day of fatigue,  at first I would drag myself out of bed to shower and have an awful day, telling myself I'm doing ok. But know I listen to my body. Bad days I'll shower, clean pjs and have a duvet day, rest and regroup. xx

    Moi

  • Hi everyone, just had a recap on all your updates! This fatigue and tiredness seems to be a pattern with my chemo I’m having fifori every other  week! Chemo day then home with 46 hour pump I’m quite ok pump off still ok Day 6 feel tired by day seven in bed sleep almost comatose day! Stay like this for 5/6 days wake up perfectly fine! Day 9 bloods and consultant Day 11 chemo again! I tried to fight it but decided to go with my body! I have four more sessions after number 12 another scan. I’m not in any pain and apart from the steroids for three days following chemo no other drugs for the cancer although lots of medication for a heart condition that I’ve been on for years now. I know this treatment is palliative and to give me extra time but sleeping all the time is not quality. If I decide to stop treatment after this lot of chemo will the tiredness go and I could do more with my days! What are your opinions on this strategy, I’m interested to know how others think about the predicament that we are all in!

  • Morning GeneS,

    Lots of questions there for your oncology team. Seems you are suffering from the treatment, which hopefully means, come the completion of your plan, hopefully a return to normalcy?

    I've just completed chemo4 (Cisplatin and Etopicide via IV, 2 more to go) and noticed that Saturday was a sleep day. Very disappointing, but, that's all I could manage. 

    Take the rest when you can. Possibly be really brutal and tey to schedule it, so your family and you know what's coming and can plan accordingly?

    Keep on keeping on x

  • Hi Loony

    Sorry you are having a tough time of it. We are all incurable with different stories to tell. If I'm honest, I too can feel like, I can't do this anymore. And then I get over my bad days and feel so different. I was diagnosed with NONSCLS lung cancer last Oct 2022. I will always need three weekly cycles of chemo. The first four were Carboplatin and Pemetrexed. The rest have been just Pemetrexed.

    Fortunately I have a very special friend who has gone through two different types of cancer and has survived. She has never molycoddled me but rather has told be stop it! That it is to be expected to feel fatigued. She has been by my side since the beginning and seen me at my worst. Also my men (hubby and 2 sons) won't hear of me giving in.

    There are days when I feel strong and others when I feel weak and I just can't do anything. But I now go swimming (free over 60s session)  and I am back doing my exercise class once a week, up to the 5-9th day after chemo. Then i have really listen to body!

    Are you able to discuss your thoughts with your oncologist. I have to admit that I don't want to know too much about what may happen as I i'm determind to go on till at least next year as my son is getting married and I have to be there!

    So, Loony, I feel it is worth it to take the rough with the smooth and keep fighting. But I also know where you are coming from.

    The cancer teams are there to do their best for us and you hear of all sorts of treatments being tried these days.

    Sending lots of hugs

    Judy xx

  • I know your right Judy and yes having had a lovely day sitting in the garden with family and friends I feel very different to how I did at 3am this morning when I wrote my blog. Of course I will carry on, as we all will while there is hope. It’s just nice to get feelings off the chest and get that hug and a lift from someone who understands. Thank you x