Forum Discussion
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
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
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
- 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 Heidi
- Oh yes. Now I remember those "you look great comments". Lol!
I agree with all that you wrote- after 8years and five months- I agree!!!
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
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
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
