Chemo cloud of gloom!!!!

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Hi,  I posted this on the emotional section bit was advised It would be better on here so here it is!

I’ve thought long and hard before posting on here, but I think I need to if only to offload, so please scroll past.

This chemo cloud of doom and gloom is doing my head in! It seems to have settled permanently overhead and won’t shift. I’m normally quite an upbeat and positive person but now I just want to cry and pull the duvet over my head - of course I don’t, nor do I let on about how I feel. I’m the one who has to have it all together, I haven’t cried once since my diagnosis,  I’ve been too busy downplaying things so as not to upset people which means people don’t really know how to act if I show a chink or 2 or 3, I have tried, hubby just said it’ll go away and others avoided me for a while!  Everyone has more than enough to worry about without me adding to them.

I have no support, no cancer nurse etc. I rang the gp yesterday and he said he would get in touch with the local hospice to see what they offer, but I’m not terminally ill and I don’t want to take resources away from those who really need them. Then he told me to keep going - thanks! I’ve also spoke to a nurse on another helpline who really was lovely, and I did feel better once I’d spoke to her but still  no answers as to how to make these feelings go away.

I did think it was the steroids, as in they make me hungry so I eat - put weight on- feel bad! Plus once the hyperactivity stops it’s a real slump. So I don’t take them unless it’s pre chemo and then not the full dose, the eating, hyperactivity and not sleeping has stopped and I’ve had no nausea or inflammation at all, my bloods are better than they were before chemo so I know it’s nothing physical, just me going a bit mental I think.

But this cloud is taking all the joy and light away, all the positivity I had, all my plans etc. I just don’t know what I’m supposed to feel or do about it.

Turned into a longer post than I thought,  just ignore me!

  • Hi . The way you feel is not uncommon and many of us here will be familiar with it. Your body has taken a battering with all the treatment and it takes a long time to recover. During this time, the body uses all its energy to help the recovery process and leaves little energy for anything else. When our bodies are not fully fit, it makes our minds lazy as well. Following my treatment, I was in the doldrums for several months. I had a couldn't be bothered attitude to everything and just wanted to curl up on the couch, even though I had no physical effects from the treatment. I had a local cancer care centre which offered me counselling or various hobby courses I could attend. I wasn't in the mood to do anything, but I now regret it as it would have been nice to learn a new skill. If you get the chance to do something like this, go for it. Eventually as our bodies recover, the dark clouds start to lift and we get a renewed energy. There is a recognised condition called Chemo Brain in which you may recognise some of the symptoms. Many people across the board talk of this. It takes a lot of self motivation to get going again, but if you start with some light exercise, this helps. You may also like to look at the In your Area link at the top of the page to see if there are any groups you can join locally. I hope you pick up soon And of course, this is a great place to get things off your chest if you feel like. Everyone here will understand. Best wishes. 

    Best wishes to All,   rily.

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  • FormerMember
    FormerMember

    Hello Ruthie2,     first and foremost, is YOUR well being.  You should not keep this bottled up,  tell your nearest and dearest, you should release the pressure you are under at this moment.  Don't be scared, we have ALL been there.  They will have to accept the news, like all our family and friend's had to.  Share your concerns, they would want you to.  You will be surprised at their reaction,  I know a lot of people think they are the ones who hold the family together, but, they have a right to know, so you can be supported verbally, but most of all emotionally.   Having as you say your rant, is your minds says of saying to you, get some help !!!!.once you can do this you will find the burden, which you , alone are carrying, will be lightened, considerably, a trouble shared is a trouble halved.  Please try this, as keeping stuffed inside you mistakes things work, acceptance by your nearest and dearest, you will see  a change in their attitude and demeanor.  It's you choice, but, please take advice from, not just me but others in here who have gone/been through this part of your diagnosis.

    Good luck ruthie2, I know you will choose the right way forward, please ask other users in here, well have ALL been through this challenge that only you can, decide to either get help of keep it bottled up,  I suggest you pick what you feel is right, not just for you, but for the family.

    Best regards, 

  • Hi I can totally identify with you.

    I’m usually really positive, I pride myself with my outward positivity. However, although I am outwardly trying to keep positive and down play things when I am alone with my hubby I cry a lot. When I’m alone I cry like a baby. I used to bake a lot for friends and family, since my diagnosis I can’t be bothered. 

    I feel like I’m losing ‘me’ - I’ve put about 1/2 stone on in a month and so I’m annoyed at myself for that too. I feel like I have no control the Chemo is ruling me. 

    All I can say is this can’t be forever, things must get better. It’s a long way away but the doctors and nurses are really experienced and we have to trust them. Don’t keep it all in - I’m much better after a good weep xxx

    Eileen xxx

    It’s going to be a long journey, but I won’t let this beat me, I’m still me xxx
  • FormerMember
    FormerMember in reply to Holbox123

    Hi Ruthie2,  

    I am so pleased for you, it a good cry, helps you release your inner tension,  so be it.  Just as long as you don't bottle it up.   You have taken, a big step, by writing your feelings down, well done.   Everyone around you loves you, they are treading on egg shells at the moment, as they don't know what to do, or say.   To do the right thing it will be hard for them, perhaps, to let you know their feelings about your condition.  Make it easy for them, discuss, when you are ready now to help you get over this, the chemo will take it out of you, so be ready for that, it can, make you grumpy, moody, tired, listless, so take your rest, when you have to, if your tired, tell them, they will understand.  And if they don't, educate them, nicely.  If you need a nap, have a nap, there is nothing spoiling, plus it will give them a break for you too.  I mean that in a nice way, it will make them understand that things have changed.  Your not that bunny on the tv with the everlasting batteries.  So ,  I sincerely hope you are feeling, better, you will recover from the effects of chemo,  and your life will get back to normal,ish.  Talk again soon.

    Best regards

    P.S.  The weight thing forget about it, your body needs a bit of extra stuff to cope with what it's going through.

  • All I can say is thank you all so much, I’ve read and reread your replies many times and I realise now that it’s not just me! I really got myself all worked up to the extent where I was seriously considering stopping all treatment using the logic that we’ve got to die sometime, I may as well get on with it- which is what I meant by doom and gloom. It’s not even as if I’ve had any major physical side effect- just psychologically I was falling apart. Like many of you said I was trying to be soo strong. I’d set myself up to be the positive one the who would sail through this and I just couldn’t keep it going.

    It was if I’d failed at this as I’d failed as other things.

    Anyway I am now half way through a family holiday which I was dreading as I’m usually the chief cook and bottlewasher, childminder and dog walker as well as entertainment officer. I’ve done almost nothing. Everyone else has just got on with things and I can’t really believe it. Seeing 4 grown up sons doing a full cooked breakfast for all us girls parents and grandparents was truly hysterically funny!!!! It did taste good too!

    Hubby has had a word and they simply didn’t know what to do for the best so they let me carry on as normal, now they know they can talk to me about the cancer and the treatment and how they can help us all. It has truly humbled me that they felt like that/this. I suppose I felt as if I had to be strong for them, and forgot that they all really wanted to be there for me and be strong for me instead!

    I’m going to chat with the chemo nurse next time I see her anyway, tell her how I felt and feel, I’m sure the cloud will come back as they do. Anyway I’ve waffled on long enough, thank you all for taking the time to read and respond. From the bottom of my heart- thanks xxxxxxx

  • FormerMember
    FormerMember in reply to ruthie2

    Hi Ruthie2,   Thank you for your kind words.  If there is one thing that I have always tried to do, is to help those who need some support.   I had the benefit of finding Macmillan Cancer Support, the staff and users have helped me to accept what is happening to me and my partner.  I say this because my partner is just as part of it, perhaps even more so, as they have to help pick up the pieces and deal with your illness aswell.   I know it's hard ruthie2, dealing with the treatments, drugs, side effects, how you feel depends on how our brain tells us we feel.  All I have done is steered you to the right, hopefully, path.  The users on here are very helpful, they have tried it, done it, examined their findings of it.  And then got on with it.  They really are a terrific bunch, but shhh!. Don't tell them that.  I am very glad you are a different person now, who is coping well and you will help people as well ruthie2.  I will always be there for you as will everyone on here.  Your very, very welcome.  Thanks again x.

  • FormerMember
    FormerMember in reply to ruthie2

    Hi again, ruthie2.  I have to apologise to you.  My last communication.  I left out something.  Please forgive me, I forgot to mention your hubby and your family.  They have given you, that extra bit of strength to help deal with your condition.  They are to be applauded for taking the bull by the horns, ( that doesn't mean you, by the way).  The other have helped, fantastically and are to be thanked for their input to your well being.  Sorry I missed them out.  Please say sorry for me, in all honesty, after all I'm just a bloke, and even sometimes close to a human.  Ha ha ha, sorry again.

  • Hello guys, it’s seems it’s not just me there is actually another reason! I’ve also posted this on the breast cancer group but I feel it’s more appropriate here 

    After blaming myself, hormones, everyone else and of course the  chemo for the Great Chemo Cloud of Gloom and Doom which descends upon me unrelentingly after each chemo, I’ve apparently been blaming the wrong culprit. It seems it’s the steroids, or rather the sudden withdrawal from them that’s caused the mega depressive episode for me!

    It wasn’t as noticeable after ec, just a general “fed up ness” but after docetaxel it really hit me, i was seriously about to pull the plug on the whole lot. Was depressed, anxious and tearful for days after. I don’t take the full steroid dose anyway - I know, call me naughty- but it’s probably a good job as the massively increased dose for the docetaxel would have seen me on suicide watch.

    I always felt so very guilty about feeling down when everyone else was valiantly struggling on with real proper side effects, even through hospital stays. There was me, no side effects to speak of but feeling so down!

    Anyway chemo nurse says she’ll speak to oncologist about lowering steroid dose further but she doesn’t think he will as I did get every se in the book bar the blisters on feet and hands, and according to her, was quite poorly - I beg to differ there, just off colour I thought. We’ll find out next tues when I go for bloods prior to chemo on wed.

    So if anyone else feels down after chemo, just mention it as a slight reduction in steroids may just do the trick. Or, as I think, once you know what’s causing the moods, they are easier to deal with.

  • Hi Ruthie2,

    glad u found out the REAL culprit.

    Steroids are a whatsit to get off completely, so take care coming off them eventually.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Thanks ! I do feel very relieved to know i wasn’t completely losing the plot! 

    Wonder why they affect people differently? 

    Much love Two hearts