Halfway through treatment

JSN

Hi all

I finally have the courage to contribute here after skirting around the edges for the last few weeks. 

In late July I felt a thickened like a small swollen area in my right breast. I knew I had to get it checked.  Off to GP who felt nothing but sent me for a mammogram & ultrasound.  Monday: Mammogram was clear, ultrasound sound showed a 'cyst' that looked a bit unusual.  Had fine needle aspirate with ultrasound.  Friday I go to the GP and receive the news that its cancer. I am 52 years old.

I know that everyone here on this forum will relate to the feelings, emotions and stupefied numbness that followed.  By the following Wednesday I was in surgery (lumpectomy) and planning chemo, considering genetic testing, career and study on hold.  I think in the first weeks I just thought 'oh well I guess I won't be here next week'. I really had ridden myself off.

Nothing prepared me for the shock, desperation and sadness that followed in rearranging everything in my life. I was working full time, long days, very busy and loving it, studying, managing-husband, home and two teenagers at university.  Everything came to a complete and utter stop.  I don't think I slept for a week.  Looking back now I can barely remember the details of the days between surgery (recovery) and starting chemotherapy.

Having four rounds of AC (last one coming up) followed by weekly pax for 12 weeks, then radiation.  So its a chemo Christmas. 

I have never felt so lonely or so confronted.  Some friends have helped and some have disappeared.  I have seen some family initially but that has sort of waned off.  Yes, I also find it extremely hard to ask for help. 

I am/was a very active person mentally and physically so treatment weeks and the following fatigue has been arduous at times.  The dexamethosone makes me feel like I am going mad (tears & sadness).  Going from high activity and interaction with people to very little has been very hard.  Everyone I know works full time! I am furiously crocheting (coming into summer!), making Christmas cards, doing crosswords, trying to read, cooking a little bit on good weeks/days and trying to avoid googling breast cancer because I end up down rabbit holes of despair where the stories all end badly.

I have been out very little so feeling very cooped up.  When I have gone out I feel so lacking in confidence and so very hairless-I find the stares, looks and avoidance stares rather intrusive.  Yes I am having active treatment for cancer but I am not contagious.

So I am here, sharing my story which is so similar to everyone here, hoping to connect, make some friends, air my thoughts and feel not so alone.

 SJ Brisbane, QLD

Zoffiel

Hey SJ. It really is the pits. I've been off work for just over a year having treatment for a recurrence. Prior to that I'd been in a busy job for 15 years--i was made redundant during a restructure a month before my (re) diagnosis.

I've managed to do a double advanced diploma while I've been sick which, though exhausting, helped keep me sane. Sort of. At one point I resorted to knitting beanies. I can't knit for shit and the majority would only have fitted Jabba the Hutt or mini me. A complete waste of time as were dozens of crosswords and hundreds of novels. I've avoided the perils of daytime tv, thank god, but that's probably because I hang out on line reading newspapers.

Keep plodding. Which is incredibly frustrating when you have always been more a hare than a tortoise. Best of luck with the rest of the chemo. Marg x

steplightly

Hi SamJgS  Thankyou for having courage to come wade in with ys in this pool of unknowns , waiting games and some wonderful support in the process  Grab your floaties or inflarable of any kind and know in the rapuds you wull be heard amidst the defining noises of diagnosis treatment and mire treatment and hopefully breathing space akong the way There is always someone to throw out a life line through info and care  oiu are not alone.  I am on gold coast and there are support groups around  Have you got the breast care kit from bcna?  We are here if you want to chat  Take care and all the best for your treatment.

Afraser

Hi there. It's a hell of a shock isn't it? All I can say is, five years on, you look back and wonder where the time went. I had a mastectomy, axillary clearance, chemo, herceptin and I am looking at the last 6 months of hormonal therapy (an AI). I was one of the lucky ones who did not suffer fatigue or nausea, so I worked through treatment. I do have a few long term side effects, which somewhat dented my confidence, but all manageable. From this end of the process, there are some things I know helped me, may possibly assist you.

I kept a journal, just on my computer. I found it helped to keep track, whinge a bit privately, remind myself of things. I called it the Bald before Christmas chronicles! I still write in it occasionally. It's just for me so far

Went to a counsellor when I got the third long term side effect. I wasn't depressed, just somewhat confused about who I was any more. Best thing I could have done. Sometimes you need someone else, not a friend or family, to tell you the obvious! Nothing dramatic, just small practices that got me back on track quite quickly.

Got a wig. I was NEVER going to wear a wig. But I did, nearly all the time. An attractive hairdo is a boost anytime, when you are feeling down, over it, and in my case, mono-boobed, it's even more valuable. It was synthetic, easy to manage and not very expensive. And many people I worked with didn't know I had cancer. It was never a secret among immediate staff, but you don't need a big sign for every Tom, Dick and Harry.

This will pass. Things will shift and happen on the way because that's life. and you are still very much part of it. My best wishes. 

melclarity

@SamJgS thank you for putting up a post and saying Hello! We absolutely can relate to everything you said. Even with friends and family around I found the whole thing so isolating and lonely, its because they had no capacity to understand the depth of it all. I was very ill through treatment, always been Wonder Woman, worked full time and raised 2 beautiful kids alone the past 7yrs, my baby is finishing VCE this year. No matter how I tried to prepare or plan the path forward to look after the 3 of us it was extremely hard. My daughter at the time was doing VCE too, so it was a harrowing year. 

Good news is we all made it through, somehow and I look back now and wonder how? that hole was so deep at times, the despair, pain, sadness and loneliness, all of it. So normal to lose friends but I can tell you, what you lose you will make up ten fold in people who really mirror the truth of who you are. I feel so blessed and grateful now for those I lost along the way, it made room for so much more. 

I don't think its about positivity or acceptance either, I think its about 1 foot in front of the other, and manage each thought, feeling and emotion the only way that is best for YOU. I learnt I had to let go of everything and go with it, in a way it gave me permission to put me first for the first time in my life. To really nurture me in the smallest of ways, it gave me this the ability to stop and just be. I rocked it bald at home but I had a wig that I preferred when I went out, it was just like my original hair and style, was ridiculous! LOL 

Sounds like you are doing really well, please keep chatting and let us know how you are, the Forum is so lovely and supportive. Hang in there,

Big hugs Melinda xo

June1952

Hi @SamJgS
Welcome to this band of wonderful supportive ladies.
Thankfully I did not lose my hair through all this but my friend said the best thing to do was to put a bright smile on, look them in the eye and say g'day to the lookers, then giggle to yourself as they make a hasty embarrassed retreat !
I am missing a boob and on the days I simply cannot wear a fakie and bra due to discomfort I use a scarf for camouflage.
Take one day at a time - and come online to vent when you feel the need for someone to listen.
Hugs  Summer  

socoda

Hi @SamJgS , Welcome to the forum. It is a shock to be diagnosed and then get used to all of the changes it makes to our everyday lives. Please don't feel bad about having a cry and feeling sad. We all tend to go through this at one stage or another and I personally think it's a whole conglomerate of issues thrown together, the speed of diagnosis and commencement of treatment doesn't really leave a lot of time for reflection and acceptance. And despair can come and creep up on you and blind side you out of the blue, let alone treatment, having to get used to new aches and pains, new looks, all whilst tippy toeing around family and friends so that you are not scaring the bejeesus out of them by how scared shitless you really are yourself!!! I attacked my garden and read and I seriously don't know where the time I was off work went but it was totally spend in recuperation. If you feel you are going too far down the path of despair and need assistance there is no shame in that, you can call 1800 500 258 and speak to someone trained at BCNA or the Cancer Council 131120 and speak to a counsellor and of course we are all here for you as well. You are not alone and we totally understand. Oh and congratulations for coming on and posting - the first one can be a bit scary!! But you're here now and that's all that matters. Sending you a big hug Xx Cath

onemargie

Hi @SamJgS you are in good hands on this forum for sure. I had triple neg last year and am wondering if you’ve had the same?  I live brisbane Northside so if you ever want to chat let me know I’ll PM you too. I had friends step up that I thought wouldn’t and ones that should of but didn’t same with family. I actually have a cousin for example that would only live half an hour from mse and has never even bothered to ring let alone pop in and her whole family are church going do gooders..... what a bloody crock of shit that is anyway. Hang in there it does get better and there is light at the end of the tunnel although it gets fucking dark in there from time to time.  But rest assured we are here for you. I might be able to let you know of some community support for you if you live around me?? I know you don’t like asking for help but trust me take help from those who offer as they only offer if they want to and trust me also if people don’t offer that’s simply because they don’t want to either. If I or any of us can help you in any way please ask there is tonnes of awesome ladies on this forum and they are the first ones to put there hand up. .... please stay in touch. Margie xx 

primek

Completely get what you are saying...I had just changed jobs and finally feeling a little less stressed and then within 3 months a cancer diagnosis. I can so relate to the lack of sleep, the fear of death and putting your life plans on hold. Never mind tbe finamcial nightmare.  I couldn't do much reading as I had a type of motion sickness on AC chemo, stemitil helped a little...phone reading was kept short, no reading books..so TV and laying down in a recliner is how I spent some time.

I get the stares as feeling intrusive. I couldn't go out some days because of it. My chemo unit and blood taking area was about 100m from my workplace. ..so it was hard to avoid people. I spent ages deciding what to wear with my ever increasing body and matching a scarf. ..and applying makeup...so people could say...you look so well (but I feel like crap)

I went out for coffee once a week at least and went to my local pool usually 3 times  a week to just walk up and down in deep water and get out tbe house.  I sometimes got motion sickness there too so had to sit on the side until it passed.

Anyway...I got through and over 12 months since chemo finished and 9 months since herceptin finished. I have slowly picked up the pieces of my life and have started to feel I can plan again...holidays...study....it will all happen. It hasn't been an easy recovery but worth it. 

Kath x

Kombigirl

Hi SJ, welcome, I'm new too,54 and studying a bachelor of Media Arts & Production at UC Brisbane campus. I go the the Mater Hospital.
My first oncologist appointment is tomorrow when I find out what my treatment will be. I'm triple negative and don't yet know what stage, although it is in the lymph nodes. I'm told I'll have chemo then surgery and finally radiation.
Friends will come and go, which I found out 15 years ago when I had ovarian cancer. This time round I'm much more open about my cancer. Social media , the internet and mobile phones have been a blessing in keeping me not so isolated this time around. 
I wish you all the best with your treatment and now you've joined this forum, don't feel so lonely.
Ange xx

JSN

Thanks ladies.  It is so comforting to hear everyone's voices. 
To hear the same sort of emotional reactions and day to day experiences.

I live on the Northside of Brisbane so any information about support groups would be fantastic.

Again, thank you everyone.  OOO XXX

LMK74

If you contact the cancer council they can tell you where groups are. From memory I think there is one around the lawnton area.

iserbrown

@SamJgS   try the link below and follow the prompts and hopefully you will find something nearby

https://www.bcna.org.au/services-and-support-groups/

onemargie

Hi there I’ll pm you my number and we can chat if you like about support services in our area. Margie xx