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
Comments
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Hi Heidi
Great idea! I agree with all that you posted ...now I'm going to post my two-penny's worth! LOL! And please bear in mind - this is my helpful and no so helpful experiences/beliefs.
Helpful
Blogging on this site (totally kept me sane!)
Being as informed as possible and if that meant bothering the drs with alot of questions then I asked and asked!
Checking and double-checking information - either on the Nett or on this BCNA site
Talking to other patients (when I was in hospital) but I must stress ONLY if they wanted to....you must respect everyone's privacy
Scented candles and relaxation music
Facebook - I fb'd my entire journey so all my family could keep up to date with what was happening and not ringing up my husband all the time - cause he was just as excausted.
Support from my husband - his strength and positiveness helped me through.
Support of my friends and family.
Spontaneous visits and surprises from friends.
Flowers - adored getting bunches of flowers every so often.
Unhelpful
Having really thin veins - not good for tests or chemo
Having the PICC Line cause Blood clots (finally resulting in a port being put in which should have been done in the first place!)
Being admitted every single time I had chemo....what a drag!
Ignorant and rude staff members of various medical facilities - particularly when having tests. (I had an incident at a Radiography practice which was so bad I wrote to the CEO and demanded an apology - which I got and the person was repremanded)
Casual remarks about "how well I look and it can't be that bad" - when in reality I was feeling like shit!
Stress of not having a wage coming in and bills mounting up.
Worrying about how I was going to cope post treatment - would I be up to returning to work??
Itchy scalp when my hair started growing back! LOL!
cheers
Helen
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Hi Heidi
Great idea! I agree with all that you posted ...now I'm going to post my two-penny's worth! LOL! And please bear in mind - this is my helpful and no so helpful experiences/beliefs.
Helpful
Blogging on this site (totally kept me sane!)
Being as informed as possible and if that meant bothering the drs with alot of questions then I asked and asked!
Checking and double-checking information - either on the Nett or on this BCNA site
Talking to other patients (when I was in hospital) but I must stress ONLY if they wanted to....you must respect everyone's privacy
Scented candles and relaxation music
Facebook - I fb'd my entire journey so all my family could keep up to date with what was happening and not ringing up my husband all the time - cause he was just as excausted.
Support from my husband - his strength and positiveness helped me through.
Support of my friends and family.
Spontaneous visits and surprises from friends.
Flowers - adored getting bunches of flowers every so often.
Unhelpful
Having really thin veins - not good for tests or chemo
Having the PICC Line cause Blood clots (finally resulting in a port being put in which should have been done in the first place!)
Being admitted every single time I had chemo....what a drag!
Ignorant and rude staff members of various medical facilities - particularly when having tests. (I had an incident at a Radiography practice which was so bad I wrote to the CEO and demanded an apology - which I got and the person was repremanded)
Casual remarks about "how well I look and it can't be that bad" - when in reality I was feeling like shit!
Stress of not having a wage coming in and bills mounting up.
Worrying about how I was going to cope post treatment - would I be up to returning to work??
Itchy scalp when my hair started growing back! LOL!
cheers
Helen
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Hi Heidi
Great idea! I agree with all that you posted ...now I'm going to post my two-penny's worth! LOL! And please bear in mind - this is my helpful and no so helpful experiences/beliefs.
Helpful
Blogging on this site (totally kept me sane!)
Being as informed as possible and if that meant bothering the drs with alot of questions then I asked and asked!
Checking and double-checking information - either on the Nett or on this BCNA site
Talking to other patients (when I was in hospital) but I must stress ONLY if they wanted to....you must respect everyone's privacy
Scented candles and relaxation music
Facebook - I fb'd my entire journey so all my family could keep up to date with what was happening and not ringing up my husband all the time - cause he was just as excausted.
Support from my husband - his strength and positiveness helped me through.
Support of my friends and family.
Spontaneous visits and surprises from friends.
Flowers - adored getting bunches of flowers every so often.
Unhelpful
Having really thin veins - not good for tests or chemo
Having the PICC Line cause Blood clots (finally resulting in a port being put in which should have been done in the first place!)
Being admitted every single time I had chemo....what a drag!
Ignorant and rude staff members of various medical facilities - particularly when having tests. (I had an incident at a Radiography practice which was so bad I wrote to the CEO and demanded an apology - which I got and the person was repremanded)
Casual remarks about "how well I look and it can't be that bad" - when in reality I was feeling like shit!
Stress of not having a wage coming in and bills mounting up.
Worrying about how I was going to cope post treatment - would I be up to returning to work??
Itchy scalp when my hair started growing back! LOL!
cheers
Helen
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I agree with all that you wrote- after 8years and five months- I agree!!!
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Oh yes. Now I remember those "you look great comments". Lol!0
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Ah, the power of hugs
In line with the "you look good" theme, I think it's insulting for me because there's no acknowledgement of how I'm feeling and an assumption that because I look good I can't be feeling so bad (and by insinuation, don't complain!). I'm sure this is not the intention but there you have it. Hang in there, fingers crossed the fatigue leaves you soon. Btw, towards the end of my treatment my blood work showed low haemoglobin so I took iron tablets. Seemed to help.
Cheers
Heidi0 -
Hi girls, my POSITIVES ARE
The friends Ive made through BC through bcna and at appointments
Knowing others are awake at 1 or 3 am on this sight IM NOT THE ONLY CRAZY ONE
Accepting help and learning to say NO and putting myself first YEH
The knowledge Ive learned about BC and been able to pass on the message
Getting people to go and have a check because of my BC
THE NEGATIVES
The staff at radiotherapy who will not crack a smile and talk like your not there
Feeling like your the cow on the conveyer belt occasionally
The people who pat and hold your hand saying you will be fine when its over you can get on with your life
The GAP payment
I think we all could print a pamphlet regards adean
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Hi Adean
It's your favourite blogger/emailer again! Agree with all you said but I'm sad you think of radiotherapy that way but I do understand....obviously things have gone downhill since I worked there! hahaha!
The Effervescent Easties group has been created so if you request membership I'll approve it straight away.
BTW when do you actually finish RT?? What date? Cause we will have to celebrate!
take care
luv H
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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
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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
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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
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You're not alone Mandy. I must admit that I have felt the same way at times 0
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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
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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:)
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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:)
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