Terrified of what lies ahead!

CathyMac

Hi,
I was diagnosed with breast cancer on Thursday the 8th November. My eldest child finishes school this year and we were meant to be heading off to Europe on the 28th November for the trip of a lifetime which had been in the planning for 2 years and now I face the biggest challenge of my life and I'm absolutely terrified. My anxiety levels are through the roof and I can't sleep. I feel totally consumed by this cancer diagnosis. I saw my GP yesterday who is trying to get me into see my surgeon ASAP but I have to wait until Monday until I'll know some more. How do I get through the weekend and the weeks ahead?

kmakm

Hi Cathy. You get through this bit, the worst bit, by literally taking it one day at a time, or one hour at a time if a day seems too much to contemplate. Break it down. The next hour, then the next one. Don't think any further ahead than that.

Most of us here know precisely how you feel. And I can assure you that you will get through. I was diagnosed 17 months after my sister died from breast cancer and had to go home and tell her young children, who I am now raising, that I had the same disease that killed their mother. I get your panic, despair and consumption by this diagnosis.

Things immediately get better when you have a treatment plan. So you just have to hang on until then. Do some deep breathing to start with. This calms the nervous system which is in absolute overdrive now. In through the nose, hold, and out through the mouth. I like to use 4-7-8, in for 4, hold for 7, out for 8. Do that five times.

A tip someone gave me here for when you're being overwhelmed with anxiety is to pat yourself on your legs and then your arms, saying this is me, I am here (forgive me if I get that wrong @Romla, @primek or @iserbrown, I can't recall who it was, sorry!). Another one is to stop, and take note of three things you can touch, three you can hear, and three that you can see.

These things take you out of your head. Mindfulness in a nutshell! If you are inclined, meditation is very helpful. I have a busy mind and don't find it easy but I was so desperate at the start that I gave it a try using the Headspace app on my phone and bizarrely, it helps.

However, probably the best thing at this time is distraction. For me it was stupid sitcoms, for others it's exercise, for some it's sitting close with friends who make you laugh.

Breast cancer puts a spanner in our lives and plans. One of the hardest things at diagnosis is having to surrender control. There's nothing for it, you just have to let go. It schools you in many things and you will emerge with a more profound understanding of yourself, and almost certainly you will never feel more loved. Europe will still be there when treatment is over.

You're the third person to come on here newly disgnosed in the last 24 hours. @Wonk and @BroniD are the others. We're all here to support each other but it's great to have someone to step through treatment at the same time as you. Check out what others have written in response to their threads.

So, finally after this rather long post (I'm sitting with my 12yo nephew while he busks!), I want to say welcome to the forum. I'm sorry that you find yourself here, but I hope you find it as helpful and supportive as I have. We're good for every question under the sun, a laugh, a rant, vent and a cry. Hang in there. The biggest of hugs, K xox

j9k

Hi @CathyMac, Its the hardest time I found, when you first find out. You have so many questions, but don't have any answers.  This throws everything into chaos, especially when you have things planned, like your trip. I was in a daze throughout that time. It's the hardest thing to do but it really is one day at a time. Lack of sleep makes our ability to cope with anything more difficult, let alone something like this. There are some medications that can help if you need it over this period. Ask your gp.Temazepam was my lifesaver. If the day was hard, I at least knew that when I got into bed I could have some respite through sleep. Take any help offered. You must be your priority. Once you know exactly what you are dealing with and what the treatment process is, it will be easier. It is scary and hard and stressful. Do anything that brings you comfort or helps you relax - even if it's only a little. Once you have info from your surgeon, you will have a better idea of what's ahead. You can then prepare as best you can when you know.
I'm so sorry you have to go through this. But this forum is amazing. You are not alone. Even if you just read and follow, knowing you are not alone helps. Ask questions. There is always someone who can answer. Day and night. Let us know how you go with the surgeon. Xx 💜 

primek

What you are feeling is perfectly normal. My biopsy was done just prior Xmas and a funeral....so I was in such a state trying to fake my way through not knowing my treatment plan. Soon enough you'll have your first  plan. 

I too was planning a big holiday when cancer struck. 3 years on we just got to have that holiday and it was wonderful. 

Breast cancer has many different types and until your pathology  is known there is no way to know what treatment is needed.  There are many different plans. Some have lumpectomies, radiotherapy and a pill...and that's all that is needed. 

I want you to know Australia has some of the best statistics in the world for survivorship. We now sit at 90% survival at 5 years....and with some cancer types it sits at almost 100% 

https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

It does help to read and understand a little before your appointment so that some things are familiar to you. Make sure someone is with you at the appointment who can write things down  as it is overwhelming. i don't recommend googling too much (although we all do it I suspect) as it can overwhelm you, especially words like poorer prognosis....which just means it's a bit more challenging to treat...it doesn't mean it isn't able to be treated.

Rally close friends. Get out of the house and do something nice if you can to distract. 

@SoldierCrab might have some great ideas.

Romla

I was inclined to shut down to cope , narrow my focus and put emotion to one side until treatment ended .I did collapse thereafter however but am ok now - that’s another story.

Being a pragmatist first - have you got travel insurance as you probably will need to defer that trip ?Also what support structures have you got that you can off load some decisonmaking so you can focus on your health ?

As well as going to your GP to get pharmaceutical help so you can sleep get the BCNA My Journey Kit as being informed puts a measure of control back into life. I Found the information invaluable especially the suggested questions I could ask.Also at the back are other resources you can tap into - I found down the track the Cancer Council Cancer Connect Line excellent at a dire moment and also information on local breast cancer groups helped too.

Take someone with you if you can at least until the numbness subsides and you can think and remember stuff. Either yourself or your support person write down what you are told - good records are important.

Stay online as we will all do our best to help you get through - you are not alone and have our support now too.There is usually someone around 24/7 as many are night owls including a special group with that handle - good to have around on a sleepless night.

Romla

Here is a start the new online kit from BCNA although I like the hard copy too.
https://www.bcna.org.au/understanding-breast-cancer/resources/my-journey-online-tool/

CathyMac

Thank you lovelies❤️ for all your reassuring words. I'm terrified but determined. It's been the year from hell for me and the trip was my light at the end of the tunnel but it now seems I was not challenged enough. I just want this cancer out of my body and I hate every day that I know it's still part of me.

CathyMac

A little bit more info about me
I'm 51 years young

I have 2 gorgeous boys. One who is 18 and one who is 14 and has been one of my very big challenges this year and the one I am most concerned about on this journey.
We live in Canberra

Wonk

Hi CathyMac
I’m so glad I found this forum yesterday and have found you too xxx.
You wouldn’t believe it but we also had a big family holiday planned to the U.S. as the kids are heading into senior school year levels we thought this was the best time. For other reasons I had to cancel this last month and now I’m so glad I did.  Both from a treatment aspect and a financial one. 
I saw my surgeon Friday and am booked in Wednesday. The ladies on this forum are amazing and are so much further on this journey than me. I’m just a tiny step ahead of you. As primek said do read a little bit, especially if you have been given literature from Breastscreen. The bit I got caught out with was when I saw the surgeon I had to make a choice between mastectomy and breast conservation (lumpectomy). Everyone is different, this may not be your path. But if it is, I had to make the decision right there. All I said was ‘what would you recommend in my position’ and I took his advice. Right now I’m feeling for you and understand how this is consuming every single moment. If you hear someone complaining about a mild ailment you are screaming in your head. And then a friend was talking about something happening in 5 years. I have no idea what 5 years means for me. I’m with you and sending you hugs 🤗 

Sister

The time after diagnosis is so difficult to get through - however you achieve it is probably okay.  As others have said, once you have a treatment plan, the world stops whirling as you've got a direction to focus on.  It's good (in a very odd way) to have a few people that are getting on the rollercoaster at the same time as you can ride that beast together.

CathyMac

Hi Wonk,
So sorry to hear about your holiday being canned as well! I was so devastated about our holiday when I was first told of my diagnosis but have let it go now and am trying to focus on the silver linings. My Tom will now get to go the his year 12 formal and go to his graduation ceremony and I will get to see him graduate high school. I will also not miss all these lovely warm weeks of summer in Canberra after such a long cold winter.
I like you am a very in control person. I work full-time and am the person who runs our household. Surrendering control is going to be very hard, but as I sit typing to you my hubby is doing all the housework.
What did you decide to do on the surgery front? Thank you for the heads up on that front!
I will here for you as we embark on this journey. Just give me a shout if you need to chat.
Sending you love and hugs❤️💕

Milly21

I remember those feelings well,I had surgery 2days before Xmas 2016. It was an awful time . I had a 13 and 14 year old at the time and was so worried about the future. I became quite depressed ,fast forward to now and thankfully I am cancer free and life has gone on ,at the time it doesn’t feel like it will.i was 40 when diagnosed,I understand how your feeling but know things will get better.like the other ladies said it is better to take each day at a time because I felt like the process takes time even though I was very impatient at time. Also I really benefited from meditation,although I know it’s different for everyone.

kmakm

Cathy you are similar to me. I was 51 when diagnosed last year. Three days later my son turned 18, and my daughter was 14.

These two lost two aunts to cancer in 10 months. Next Friday my son does his last VCE exam. I've just asked him if he'd be happy to talk to you if you wanted to speak to a youngster who's trodden this path. He's almost 19 and a good communicator. Let me know at any point if this is something you'd like to do.

Equally I'm happy to chat about any of the kids' reactions, which were all diverse. There's a PM (private message) function here, please feel free to message me there whenever you like.

Don't underestimate your children. They are often instinctive and highly empathetic in their responses. The reports of difficulties with children here tend to skew towards the young adult variety, more than the true youngsters.

If I was in Canberra I'd be asking you out for a coffee! K xox

CathyMac

Thank you kmakm. I am very worried for my 14 year old. My 18 year old is out with his dad as I type looking for a pink suit to where to his formal in 2 weeks. He wants to be all decked out in pink in support of his mum's breast cancer journey. He seems to be coping ok at the moment but I will PM you. Lots of love to you❤️

Beryl C.

Hi CathyMac - I was diagnosed seven years ago and phoned my adult son to tell him the news (he lives in Oregon, USA). He replied, 'Gee Mum, how you going to play your hand?' It was gold, the best thing anyone has asked or said in seven years. He was actually suggesting that I needed to think about how and what I was going to do, think and be, how I was going to adjust to a life that had tipped me upside down. Consequently I gave myself permission to be how I needed or wanted to be on any given day, learned to say both 'yes' and 'no'. Cried when I felt sad as the tears release and relax. This forum is also GOLD! I have one suggestion, consider taking someone with you to every appointment and ask them to make notes - I found this invaluable and I was more relaxed as I knew someone else was also listening. I would love to see your son in his pink suit, what a fine young man he must be!

SoldierCrab

hi @CathyMac

Posting my helpful links then I will read and reply to other information asked 

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

Navigating the online community
formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further
information or support please call 1800 500 258. BCNA’s helpline will now be open from
9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html