Help...I don't want to be thought awesome, I'm just trying to live my life

[Kess]

Orangegirl I felt exhausted just reading that 😳. It's good you found a way to cope with treatment that helped you. Hopefully you can still get enjoyment from being active now. angel I agree with you being told how well I am doing makes me really snarly inside! I am just getting on with things because that's what I do.... riversideDawn - just do the things that you have to or want to when you don't feel great. The rest can wait. Really feel sorry for you an amazing level of support from my husband made all the difference to me last year.

[SamanthaL]

Wow yes Angel, I hadn't twigged, people do tell me how I am!

[OrangeGirl]

Reading your story makes me smile! I experienced exactly the same thing.

You're not brave, you've got NO CHOICE but to deal with it all. You either do or you don't - simples!

I was fell running again 14 days after mastectomy, mountain biking again after 19 days. I cycled to oncology appointments, I ran on average 15 miles a week throughout chemo. I cycled to most of my radiotherapy sessions (20 mile round trip). I cycled the Tour of Flanders (82 miles) one week after completing treatment, Paris-Roubaix (88 miles) a week after that. I ran 17miles the following week for a hospice event. I was back to my normal working hours 1 month after completing treatment.

I wasn't brave, I was desperate to give myself something else to keep me occupied.

You go girl!

[Angel2014]

Hi Jomar that's exactly how I feel - can't be bothered 🙂 xx

[Jomar]

Funnily enough someone just said to me " I just heard you are better, I didn't know you were ill". I just said "yeah, it's all cool". I can't be bothered : )

[Angel2014]

Hi Ladies,
I can empathise with all these feelings. I don't like to be told how brave I am however I don't like being told how well I've coped and how i can put it all behind me now my Mx / recon is done.
The reality is I'm waiting for the results of 3 different types of genetic tests, I am undergoing regular implant increases. I have more surgery to replace the expander later this year, I need to decide if I want my ovaries removed, I am horribly scarred and constantly uncomfortable and psychologically scarred for the rest of my life so when people tell me how relieved I must be now it's all over I want to scream at them to F off.
Of course I don't do that, I try to understand that these people mean well and desperately want me to be healthy/happy and the person I was before my diagnosis. It is frightening for everyone involved.
I have found people don't ask me how I am, they tell me how I am i.e. You look great, you're doing so well, you've coped amazingly!
The only friend of mine that genuinely wants to know how I am has unfortunately been through this herself.
At least by sharing on here we can be honest and we see we are not alone xxx

[riversidedawn]

Hope you're recovering Judith, that's quite a goal you've set yourself even without the BC! Good luck, hope you achieve it.

[Judithvr6]

Cheers jomar,

I know I could defer but my fella got a ballot place (how lucky is he) so we are going to London, days off booked, hotel 3 nights, trains booked and to be honest I don't want to do that all over again next year. I'll want to do something different.

Ha... and last Nov he decided to set up a charity page for his run just in case anyone offered to sponsor him. He chose a cancer charity (not bcc though) and his sum raised had gone through numerous increased targets since my Feb diagnosis 🙂

And yes, I think anaesthetic and me don't get on 2 days down the line. I've felt much more cheerful since though the onc appointment gave me an unexpected wobble.

J

[Jomar]

Wow, roadrunner, you are pretty awesome too 😉 

Judith, ignor me, Im just a bitter wanabe runner, get out there and run 😉

xx

[Jomar]

Judith, you are a little bit awesome 😉   Many years ago I was a fitness instructor and was as fit as a butchers dog but even then I still couldnt distance run no matter how much I tried.  I just never could and never will.

I always find it strange when people say how brave I have been.  I know its said with good intentions but it does irk me a little. I think of bravery as making a choice to do something difficult. I just got something ugly out of the unlucky dip and therefore had to just go along with it.  No one will ever get it right, no matter what they say, unless they have been through it ( I dont mean to sound like we are in some exclusive club).  

You are an athlete and therefore know how to listen to your body. Give it what it wants (within reason). Of course you need to run but you will need rest as well. Im sure you wont want to but you could refer your marathon place to next year and give yourself a little more time to get ready for the July event.  My surgery was different to yours so I dont know how you feel but 2 weeks after mine I was tearing around trying to pretend i hadnt had surgery.  In hindsight, not my best idea : ) 

And dont worry about having bad days, anaesthetic if horrible stuff.

x

[RoadRunner]

Judith,

Hope you make the marathon.  I am doing it too, but I am 8 years on so no BC issues anymore, except the sleepless nights from tamoxifen hot flushes.  I ran the race for life on chemo (a real tiddler compared with the marathon!) so understand where you are coming from.  People seemed to think I was some sort of super hero for doing it, whereas it was just my coping mechanism.  So much easier to focus on a race then on chemo.

[Judithvr6]

Ah, riverside.

A 3 day meltdown. You go girl 🙂 apologies if you are still in melt down, I hope you have picked up now.

Samntha makes some good suggestions.

Some things will have to give and if your husband can't help more (knee op) or won't help more then more things will have to give.

J  xx

[SamanthaL]

Riverside dawn

You can't work, feed everyone and iron shirts when going through chemo. Yes some things but not all. Ask for help, from him and family. Or just have unironed clothes and ready meals. Can friends help with the darlings? Please try to give yourself a break, and be superwoman next year.
I did carry on working, but I asked my lovely cleaner to step up her hours, friends came to cook meals, and shopping was done on line. And I didn't iron.

[riversidedawn]

Thank you wemblo

[Wendyy]

Riversidedawn. Just to say, I'm listening and understand. Sorry I've no helpful suggestions just understanding.

Big hug xx

[riversidedawn]

We all take on too much. I have been trying to be normal since diagnosis and MX in September 14. I've still got 5 weeks of Chemo, reconstruction and radio to go. I'm fed up with being told how well I'm coping and that I look great. With 2 young kids and a home to run and money to earn I don't have a lot if choice! I'm also trying to fit in yoga for me and last week had the biggest 3 day meltdown which shocked my husband - why would I think its going to be hard to cope in 2 weeks when he has a knee replacement???

It was so bad I cancelled my Chemo (number 8 of 12 weeklies after 3 x FEC). Husband thinks its selfish to want to stop treatment..... Coming from someone who still expects food on the table when he gets home, shirts in the wardrobe and kids getting on well at school etc etc

If those close can't understand what hope do we have that anyone else will??

Thanks for listening !!!

[SamanthaL]

Yup,
I struggle any way,
If people think I'm the way I was before, they rely on me to do things that I really can't do, but then I can't stand being told to take it easy.
I find mindfulness helps because it really taught me to listen to my body better. I need to give myself time to heal, and I am terrified what they said about stress related Cancer. I was told clearly that dieting etc can build stress into the body, and fuel the Cancer.
So not being anything but me.

[Judithvr6]

Thank you Jane, Gilly,

Yep, 'you're so brave' is one of those phrases that can trigger a silent scream.

And I had a course of counselling due to a major crisis (not a BC one) about 10 years ago then I did an AS course in psychology so I have a minute amount of self awareness of how all this is effecting me and how others do/do not cope.

I'm not good at asking for help, posting on here even is difficult for me. I think I understand why... That counselling was very interesting.

And taking of phrases to make you want to scream. My fella is doing his best but is out of his depth.. he's said he doesn't know what to say to me sometimes and I'm fine with that but this one was a cracker last night. He said

'Well, it can't get any worse'

Sigh.

Xx

[Butterfly318]

Evening Ladies

It is very difficult for anybody who hasn't had breast cancer to know just how we feel.  I too don't want to be seen as a poorly person but on the other hand if you just get on with things people make really big assumptions about how we are doing.  It is very early days for you ladies and i think  i was seriously melting down on a regular basis at that stage.  I was diagnosed October 2012 and had surgery x 5, Chemo and Rads.  I just think people are uncomfortable with frank conversation and it is easier to tell us how well we are looking, how fabulous we are doing and how wonderful we are than ask how we are really feeling !!!!

My Husband and just one friend have had the conversations and know my innermost thoughts,  I have other lovely friends, a Sister and a gorgeous Son but none of these really know how i feel.  I am a Psychiatric Nurse with Psychology Training so thought i was gonna sail through all this and come out the other end (it's been my job for years).....how wrong could i be.

Distraction techniques whether they are running, baking, mindfulness can keep us focused for the time being and get us through the treatment.  I have had everying available Reiki, Reflexology, Mindfulness and am currently having Counselling.  I have found that it is better to use professionals and appropriate services who do know how we feel and are able to ask the right questions.

Ladies good luck with your treatment and please be kind yourself and your friends.

Take Care  Gilly x   

[happywanderer]

Hi Judithvr6

I'm finding it difficult dealing with people's reactions, they keep saying "you so brave" etc.. I feel like screaming as I don't feel brave, I feel bewildered, unsure and often numb. I sometimes want to ask what did you expect to see! Me weeping and wailing!! It's 5 weeks today since my WE but since being diagnosed with BC the hospital has diagnosed other medical conditions I wasn't aware of.. I just feel like shouting at the top of my voice " I'm young and fit and haven't got time for BC or platelet disorder I want to be out walking in the mountains or skiing as I normally do every March not stuck at home waiting for radiotherapy to start"

Sorry about my rant, but I'm sure others will feel similar
Take care wishing you well with your running
Big hugs Jane x

[Judithvr6]

I'm having a bad day. I'm 48 hours post my second WLE op (1st one 3 weeks ago) and I had a melt down the Friday after the first so maybe this is just a general anaethetic reaction but...

I'm getting tired of hearing people say how 'awesome' I am!

I'm a runner. I have a London marathon place and I signed up to do a 100k event in July.
As such I'm trying to keep some miles in my legs throughout all the diagnosis and ops so far.

But everyone keeps saying how great I am doing to be out running (I'm forcing myself to take another 10 days recovery post op) and I feel as if they are thinking I'm putting everything behind me and am coping with life very well.

I'm not. I just want to run now, while I can to some extent because who knows where I'll be in 6 / 12 / 18 months time. I've put on half a stone since diagnosis and am so annoyed as I kept my weight in check over Christmas so I was in a good place for London & 100k training. But comfort eating & 6 boxes of chocolates from well wishers post 1st op has ruined all that.
I believe I have a very good prognosis so I'm wallowing a little I know though being here again, 22 years later, is a big shock in itself.

How do people balance getting on with their life but not so much so that everyone else thinks all is fine in their world and they are coping perfectly well?