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Heidstar12's avatar
Heidstar12
Member
13 years ago

Helpful and not so helpful

Ok. Chemo completed and most side effects gone after 2.5 months. Tamoxifen for the last 1.5 months with minimal side effects so far. Energy levels returning to normal (better than normal actually). What does this mean? Well, it means that I'm starting to reflect on my journey of the last 8 months since diagnosis and what I found help from an emotional standpoint, as well as what I found not so helpful.

Please add to the list from your own experiences in order to help others just starting on their journey. Some of these tips are also useful for friends/family of those diagnosed with BC:

Helpful

  • People who listen without judgement or interruption. I found it easier to speak openly and honestly with a counsellor or psychologist as I didn't feel I had to worry about what they might think of me.
  • Empathy from others i.e. people agreeing when we tell them how awful we feel (rather than 'it'll get better","at least you're alive' etc!)
  • Allowing yourself not to always be strong or 'together'. A good cry does wonders.
  • Be aware that stress causes an increase in your cognitive load i.e. your brain won't function too well. So enlist help in decision making (even having someone else decide what to cook for dinner helps as does having someone with you at your appointments)
  • Spending all day, everyday in bed can be boring and depressing. Try to change your environment when you can and get a change of scenery. Even if it's moving from the bedroom to the living room:) or ask someone to take you for a drive or a walk just to get out of the house.
  • Being around other people can help us stop being so internally focussed all the time and help us "get out of our heads".
  • Meditation
  • People keeping in contact with me proactively and sending words of encouragement helped me feel connected. This is especially important after the drama of surgery is over and the boring drawn out process of chemo & radiation take over.They don't need to do much, just let you know they're thinking of you.
  • Celebrating small wins, like getting up to have a shower! It is a big deal :)

Unhelpful

  • People telling you to be strong, to be positive. Please don't have such high expectations of me. If I want to be a blubbering mess sometimes, please let me!
  • People who don't listen to your story and instead proceed to tell you about someone they know who knows someone who has cancer.
  • People (including oneself) minimising the impact of the illness such as saying that breast cancer is a 'good' cancer to have, it'll be over in 4 months, at least you're alive (all said while you can't eat because your tongue is full of ulcers and can't walk because your legs are the size of tree stumps!)
  • Horror stories about cancer and chemo, especially those on the internet (beware Google!)
  • Putting pressure on yourself to be a 'good' patient.

I'd love to hear what other ideas you have about coping emotionally.
Cheers

 

18 Replies

  • magicmum's avatar
    magicmum
    Member
    13 years ago

    I had to laught the other night at work. A girl I had just met said to me "You are lucky you didn't lose your hair in chemo". So I know my wig looks all right !!!

    magicmum

  • magicmum's avatar
    magicmum
    Member
    13 years ago

    I'm through chemo now and about to start radiation next Monday.  I feel tired al lthe time, just used to it now. My iron is always low, but doc is not too worried.I take extra magnesium and have just started on Arimidex. Hopefuly that won't cause any unwanted side effects, I've had enough of those. The chemo ones are just wearing off.

    If I thought I could do it I would go out without makeup - that'd sure make ppl NOT say how good I look. I know they mean well and mostly I just smile and thank them for asking.

    Take care

    magicmum

  • Custard's avatar
    Custard
    Member
    13 years ago

    Their catch cry was, when I attended the fabulous day session, was " the worser you feel, the more makeup you apply"! 

  • LouiseTurner's avatar
    LouiseTurner
    Member
    13 years ago
    I try to stay home when I'm not feeling too good. But if I am going out I try to look my best. I take time with what I wear including a head scarf, wrap or whatever. I spend time with makeup including a few tricks from LGFB. I try to stay hydrated so my skin looks healthy, I try to exercise a bit so I feel better generally. I had long hair before and never wore earrings, but I've had my ears pierced and have some nice new earrings. I find I am wearing things I would not have considered before, more colours, much more interesting than before cancer. I try to do the best with what I've got, just like everyone else I guess. So if someone I meet says I look good, I'm very happy take the compliment. I've put in the effort, same as I would have prior to cancer. And usually I think I look ok. Different, but ok. Only my family really know what I'm going through, and I don't think I really need to burden my friends too much with details of the true difficulties of treatment. (I do tell about the weird gross things though), but unless they've been there, they could not understand. So for me I take compliments as intended, even if I don't feel great. I have not come across anyone who does not show sympathy or care with my situation, even strangers. Some people struggle with how to react, or what to say. Friends and family like that I have tried to make it easier for them, rather than have them worried about how to approach me. There's no malice there, just an inability to understand what to say or do. I've been there too, and that's really hard. I do feel really down after treatments, and I hate what this whole cancer thing has and is doing to my body. My 40s were going to be my best 10 years. So I sometimes get really angry too that forever my body and health will be compromised. I hate that my family are affected, they care for me, take time away from work, Uni or school to be with me. But I suppose we all gain a little bit more tolerance, so I just can't get upset at others ignorance or lack of knowing just what to say or do for me right now. Cancer is crap...no question. But I reckon life is too short to be angry and upset. BUT.....some of the harder comments to deal with.... To "stay positive" That " you'll be fine and back to normal soon" That "well you don't have cancer now..right?, they cut it all out" And the best comment "I know someone having chemo and they are just normal; work, jog, unload trucks, whatever, they even have hair". L:)
  • LouiseTurner's avatar
    LouiseTurner
    Member
    13 years ago
    I try to stay home when I'm not feeling too good. But if I am going out I try to look my best. I take time with what I wear including a head scarf, wrap or whatever. I spend time with makeup including a few tricks from LGFB. I try to stay hydrated so my skin looks healthy, I try to exercise a bit so I feel better generally. I had long hair before and never wore earrings, but I've had my ears pierced and have some nice new earrings. I find I am wearing things I would not have considered before, more colours, much more interesting than before cancer. I try to do the best with what I've got, just like everyone else I guess. So if someone I meet says I look good, I'm very happy take the compliment. I've put in the effort, same as I would have prior to cancer. And usually I think I look ok. Different, but ok. Only my family really know what I'm going through, and I don't think I really need to burden my friends too much with details of the true difficulties of treatment. (I do tell about the weird gross things though), but unless they've been there, they could not understand. So for me I take compliments as intended, even if I don't feel great. I have not come across anyone who does not show sympathy or care with my situation, even strangers. Some people struggle with how to react, or what to say. Friends and family like that I have tried to make it easier for them, rather than have them worried about how to approach me. There's no malice there, just an inability to understand what to say or do. I've been there too, and that's really hard. I do feel really down after treatments, and I hate what this whole cancer thing has and is doing to my body. My 40s were going to be my best 10 years. So I sometimes get really angry too that forever my body and health will be compromised. I hate that my family are affected, they care for me, take time away from work, Uni or school to be with me. But I suppose we all gain a little bit more tolerance, so I just can't get upset at others ignorance or lack of knowing just what to say or do for me right now. Cancer is crap...no question. But I reckon life is too short to be angry and upset. BUT.....some of the harder comments to deal with.... To "stay positive" That " you'll be fine and back to normal soon" That "well you don't have cancer now..right?, they cut it all out" And the best comment "I know someone having chemo and they are just normal; work, jog, unload trucks, whatever, they even have hair". L:)
  • helen_anne's avatar
    helen_anne
    Member
    13 years ago

    Hi Mandy

    Well said - isn't it ironic - if you don't look sick people think you're ok!  But on the inside you're really feeling like shit!

    I have to say that never happened with me...as I ALWAYS looked like I was half dying - I had a really terrible time and I lost over 10 kgs....but it angers me when I hear of others being treated like this!

    Just shows how ignorant people can be.

    Glad you've accepted my contact request....talk again soon.

    Luv Helen

     

  • Heidstar12's avatar
    Heidstar12
    Member
    13 years ago
    You're not alone Mandy. I must admit that I have felt the same way at times :)
  • Custard's avatar
    Custard
    Member
    13 years ago

    I admit that when people told me how well or good I looked I took it as "You are making this up". Honestly who would go through this for fun? Some people haha

  • Heidstar12's avatar
    Heidstar12
    Member
    13 years ago

    So true re: having a 'measure of grace' towards others - nicely put!

    I finished chemo 3 August (no radiation) and started tamoxifen about 3 weeks later. I'm actually feeling great now for the last 2 weeks or so. Although I am not working at the moment and have no kids so I've had a good chance to recuperate :)

    I try to walk every day for 30 minutes each morning (realistically 4-5 days a week at the moment!) and practiced yoga throughout when I felt up to it. I find yoga helps me stay centred and keep my body moving so I don't seize up entirely! And it helps with muscle pain.

    I'm also taking vitamin D (I was deficient), iron (my haemoglobin was low), and  fish oil. Can't hurt right?

    I hope you get your mojo back real soon. I does take time and as they keep telling me. "everyone is different"

    Cheers

    Heidi

  • Anna-Marie's avatar
    Anna-Marie
    Member
    13 years ago

    I had to smile at your post! I also found it annoying when people said you looked good.My interpretation was either :  you look good so you musnt be that sick! OR  you look good so that should be a consolation for all you're going through! I have tried to have the attitude that the majority of people have kind intentions and basically dont know what to say.  So not only do we have the hard journey we have to have a measure of grace towards the spectators too.

    My husband and 19 year old daughter have been my mind readers and huggers. Very thankful for them.

    I have low energy levels too. Quite frustrating. I finished treatment in Jul and am on tamoxifen. I'm not bouncing back at all how I'd hoped. I try to walk each day only for 20 mins so far.Thinking of doing some yoga to build up some strength and deal with muscle pain.

    Where are you at in your journey?

    Regards,

    Anna-Marie