Hey all,So today I have gotten from my GP a preliminary result of stage 2 IDC involving the lymph nodes. HER negative and hormone receptor positive. Still need to do more tests to see if it’s spread. I felt something was wrong about a month ago and had developed a lump under my arm. I had a breast exam by the GP who thought it might be an abscess but wanted to rule out any other issues, since I’m only 41 and had never had a mammogram. I’ve felt a bit under the weather for about the same time but put it down to work stress since I’m a high school teacher. Emotionally though I think so far I’m taking it well, although I might be compartmentalising until I get the next set of results. The only thing I’ve struggled with is the emotional reactions of others- one of my siblings has been a godsend but the other managed to turn my telling her about my cancer her retelling every scare she’s ever had. However as a single parent with previous DV and high conflict I’m worrying about my ex finding out. I need to tell my kids (14 and 12) but keeping the news away from social media is definitely something I need to do because even though my profile is locked down he has found out stuff I didn’t want him to know before, and this is bigger news than that. I guess that’s all for me atm- reaching out and seeking support is something I want to do earlier rather than later.

So sorry to see you here, @MelV83 ... your world is turned upside down in a millisecond .... Whack up ANY question here that you need an answer - there are NO silly questions xx. We've all been there - the 'caught in the headlights' reaction to the news ... shocked, stunned, angry, upset - and a mix of all of it!Where abouts are you? State/city/region - if you add it to your profile, members may be able to point you towards specific support groups nearby.A BC diagnosis can really muck with your brain too. :( If you feel that it is becoming overwhelming, talk to your GP and ask to see a counsellor xx. Family can be funny - and even friends too - you may be surprised who steps up to the plate to support you - and who may 'stay away' xx It has happened to all of us. Maybe, when you DO tell people, let them know that you'll send an email (or start a blog or even private FB page) where you'll keep them informed every couple of weeks - so you aren't going over it every time AGAIN you talk to people - as it really can be upsetting to you!Consider listening to the Charlotte Tottman Podcasts on 'What you don't know, til you Do' .... which is her own story, as she is a specialist Breast Cancer Counsellor who was diagnosed herself over 5 years ago. Her podcasts are REALLY easy to listen to & I am sure that they will help you xx. They are here (listen to Series 1 first):http://www.drcharlottetottman.com.au/my-podcast.htmlI've never had kids - but I would think that being relatively truthful with them, but being selective in what you tell them just now - they will probably already have the 'vibe' that 'something' is going on .... Have you been assigned a Breast Care Nurse yet? Maybe you could chat with them about how to break the news to them? I think you'll find them very supportive of you too xx. I was very selective on who I told initially ... but, if the kids have contact with your ex, it could put more pressure on them if told not to mention it (things like this often just 'slip out' in conversation ...) There are also dedicated 'kids sites' to help kids who's Mum has cancer xxThere ARE groups who you can contact who may also be able to help guide you thru this emotional time ... Canteen and Camp Quality are 2 of them ..... I think your kids will fit in the age group for Camp Quality (some groups are age restricted) .... and can involve a weekend away at a camp with other young teens who's parent may have cancer ...https://www.canteen.org.au/young-people/parent-carer-cancerhttps://www.campquality.org.au/how-we-help/services-and-programs/kids-impacted-by-a-carers-cancer-kicc/https://www.cancer.gov/publications/patient-education/when-your-parent-has-cancer.pdfSome great services mentioned here .... Redkite, Youthbeyondblue, kids helpline and more:https://www.cancervic.org.au/cancer-information/children-teens-and-young-adults/talking-to-kids-about-cancer/finding-support-and-information.htmlYou can also ring our helpline here for a chat - 1800 500 258 - during Mon-Fri work hours .... sometimes it helps talking to someone who is removed from your immediate circle xx Take plenty of deep breaths, take one day at a time, one hour, if needs be xx. Try not to get ahead of yourself or think of the 'what ifs' ..... be lead by your Medical Team, who will be doing their best to get the best results for you xxCheck out this thread for lots of info on the forum .... we've even got 'funny bits' if you need a laugh. https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latesttake care and wishing you all the best for your next appointments xx

I just wanted to add that I have now told my 14 & 12 year old children, and while my daughter was pretty upset, my son took it pretty well since he is autistic and things don’t look different at the moment, he will struggle when changes happen. But I thought I would share the analogy I used to explain what cancer is and how it is treated in case it helps anyone else. I did hear it on a podcast by the cancer council talking to someone from canteen, but added a little since I’m a science teacher. “So think of an oval covered in grass. The oval represents your whole body and the individual blades of grass represent the cells in your body. Your cells need certain things in order to grow and function- water, sunlight and carbon dioxide. But sometimes other things that don’t belong also use the same things to grow, like weeds. Weeds are like cancer cells that can grow where they are not supposed to, simply because they gain nutrients in the same way as blades of grass do. Except weeds take over in a space, and this is where a tumour grows. When that happens, something has to be done.” It’s at this point I asked them what you normally do for weeds. Most kids will say to pull them out. So when my son said this I continued: “Pulling the weeds is what surgery does. Sometimes you just have to pull gently and only take the weed itself, and otherwise you have to use a trowel and dig up the weed which will take some of the grass with it too, but the weed can’t continue taking over. If the problem is bigger then sometimes you might need to use a weed killer to kill the weeds so they can’t grow anymore.” Then I questioned them about what happens to the grass around the weed if you spray the weed killer. They usually understand that some of the grass will die too. So then I use that analogy from the beginning where just like the weed grows in the same conditions as the grass, the grass can die from the poison sprayed on the plant too. That’s where medicines like chemotherapy will work at killing the cancer cells but can damage and kill other cells too so it makes people sick. And both of them got it- they aren’t little so the explanation was more complex, but I really liked how the original example was a simple analogy that most kids will be able to pick up on and understand why it develops and how it’s treated. It’s been almost a week, and while my daughter is emotional like me so has been upset and clingy, my son has had a few chats with myself and his psychologist to discuss things like surgery and chemotherapy since and has assured me he is ok with it. I’m still hiding it at work and with the lack of sleep and just generally feeling rundown is not helping. The diagnosis is all I have at the moment with a few weeks yet before I attend the breast clinic, so I keep trying to bring down any spikes in emotion or stress. As I work in year to year contracts and don’t have any other income I still need to see if I even have a job next year which is normally a stressful time already without all the extra. If they know, unfortunately my chances at a job are low so it’s important to me for the moment to keep it quiet. I have some people I trust who I can talk to about it, but sometimes I feel weird talking about it because I don’t want to make it all about the diagnosis and yet in the back of my mind it is all about it and hoping that the next lot of scans are clear and plans can start being made. Sorry about the essay, thanks for your patience!

@arpie the only reason I was given was that they didn’t need me anymore. Then today one of the student teachers burst in all excited because he was going to be given a special authority to teach next year, so I guess I know why they didn’t need me. So after 3 years teaching there I’ll be saying goodbye in 6 weeks. There might be a teacher shortage but it would seem that there isn’t a lot of jobs advertised at the moment so I will have to just wait and see if I come up on any lists for principals in terms of contracts. The one thing I maintain about myself is that I’m very good at my job, and as I work in a tough school I run a tight ship in my classroom, which benefits the kids but has made the leadership look bad I suppose so there is another reason. I need to see if I can freeze my mortgage once I have a final diagnosis and plan in place. Then I have to check if my super has income protection and if I can access it if need be while I am unable to work. I have my sister who said she would help but I find that very difficult. I FINALLY made contact with a breast cancer nurse today who is pretty concerned that I am 2 weeks post diagnosis and I’m still 3 weeks from an appointment so she is going to try and get an appointment earlier than that. I no longer owe my workplace anything and will lose my accumulated sick leave once I’m no longer working so am planning multiple days off for the rest of the year so I can have some time to organise what I might need in the next few weeks/months. Hopefully she will call me tomorrow.

Hi @MelV83, good luck with your scan results. Don't be too freaked out if they send you off for more scans as a result. They picked up a few things on my initial scans, completely unrelated to my breast cancer, which they then had to investigate. They assured me at the time that it is very common to pick up other things when they do full body scans. I had a cyst on my liver (common), cyst on my ovary (common) and nodule on my lung (fairly common). Mine were all fine.

Sounds like a very challenging time to say the very least MelV83 - Glad you can come on here to connect with people who care and support your breast cancer experience. In chorus with the below comments, if you haven't reached out to Legal and financial services - Cancer Council SA. it may be a good time to do so. They can provide advice to cancer patients, carers and bereaved carers experiencing cancer-related legal or financial issues and are unable to afford professional advice. They can also discuss any eligible grants available to to reduce the short-term financial burden on households via payment of an unpaid household utility bill such as gas, electricity or water. We also have information on our website I am an employee and have breast cancer Please feel free to reach out to our Helpline 1800 500 258.

Today was D Day | BCNA Online Network

48 Replies

MelV83
Member
1 year ago
MelV83
Member
1 year ago
Yesterday was the most dramatic first chemo- definitely was hoping for a calmer experience! I had 4 failed cannulas with the last into the only good vein I had which still needed to have its drama moment and need to be held by a nurse’s hand the whole time. We ended up securing it with the tourniquet but it was a lot. Then I needed an emergency ecg as my heart went haywire so looks like we need to try a different mix of pre meds before dose 2. Apparently my reaction was a mystery to the on call oncologist.

Guess I proved to the staff why the port is the better option…

Nausea has been pretty bad today even with the meds but I’ll chat to the oncologist next week to see what the plan is.

Pictures are of the setup in case anyone else has trouble with the drip rate in their veins during chemo- it wasn’t on tight but out just the right amount of pressure, so hopefully it helps.
arpie
Member
1 year ago
(Sorry, I thought I'd posted this last night xx)

Hold your head up high, my friend xxx. Those kids will always remember your wonderful teaching for decades to come @MelV83 xx I am so sorry the principal showed their true colours today - but glad the other staff and kids have been supportive of you with big hugs and tears xx

Re taking to your chemo sessions tomorrow ... some take magazines (difficult to concentrate on books/stories) or Suduko/puzzles ... some take their ipods & headphones so they can 'zone out' ..... some take their favourite nibbles .... tho you should be given morning/afternoon tea and lunch (if you are still there during those 'breaks'.) Some even knit or do their craft stuff.

As @Katie46 says, loose comfy clothes that don't have long tight sleeves. If you end up getting a portacath, a TShirt with some zips added makes it very easy to access the Port. (My husband used these for his treatment.)

Take care & all the best xx. If you feel crook at any time, make sure you tell the nurses immediately. They'll look after you xx
Katie46
Member
1 year ago
Hi @Melv83 all the best for starting your treatment tomorrow.

I took a book, and a blanket as the aircon up here can sometimes be cold. There was a TV in each bay, so I had that to watch as well.

Wear something comfortable, but with easy access to your arms for the IV.
MelV83
Member
1 year ago
Little update from me- I finished up at work today. My principal said the right words but with absolutely no warmth, and I spent the time after I told her scrambling to get relief notes written for the rest of the year and photocopy resources etc.

I spent most of today in tears and feeling like I was leaving in shame with my tail between my legs like I had done something wrong. There was no farewell from my school at large, however my learning team was very generous and gave me a gift card to help with anything I might need, and we had hugs and a photo together before I started packing.

My students had mixed reactions, but mostly supportive and some were genuinely very upset (some of them I have had every year for 3 years for either maths or science) and many flooded me with cards, little pictures they drew me and little notes to wish me well. I’m going to put them on my wall to keep me inspired.

And lots and lots of hugs today- I hugged them while some of them cried, and some of them made me cry when hugging me goodbye and telling me I was the best teacher they had and lots of little inspirational quotes. So while my leadership didn’t care and didn’t say goodbye- the people that mattered at work did and I felt the love from multiple staff and students who all gathered to hug me goodbye at the end of the day and wave me off.

I bawled the whole way out the gate.

Chemo starts tomorrow- 4 fortnightly rounds of AC (red devil) and then 12 x weekly rounds of paclitaxel (I hope I spelt that right). I have to have scans right after the AC is over to check for the response. And if it’s not shrunk enough, I may have to have more of the red devil.

Is there anything I should know, or take with me to the hospital tomorrow? I have read the patient information sheets about the drugs and side effects, but in terms of more what are people’s “go-to” for their time in chemo?
arpie
Member
1 year ago
That's a bugger @MelV83 ... good that they'll start treatment sooner tho xx

I hope your kids' father surprises you supports both you and the kids well xx.

All the best with the Principal ...

And remember - when the going gets tough ..... the tough get going xx. Treatment for Mets is MUCH better now than it was in the past ..... your team will be doing the best for you - for the best results xx

take care xx
MelV83
Member
1 year ago
Had my PET scan this morning, and some unfortunate news- while still locally advanced, it appears that some Mets are in the lymph nodes around my clavicle so there is definitely no more waiting and everything is happening very fast. Signed the consent forms for the port today and am on an urgent call list. I see the oncologist on Friday to go through my protocol so looks like we are throwing everything we can at it asap to stop its progress.

The doctor I saw today told me this new news hasn’t changed my treatment plan but it has made it more urgent- although they have not told me that it is aggressive or anything like that so I’m trying to keep positive.

I’ve now told my children’s father and while his reply to my email seems supportive, he has already mentioned changing care arrangements which can be taken both ways, so I’m keeping a quiet eye on that. The last person I need to tell now is my principal who has a poor history of being compassionate towards staff, so hopefully that discussion will go well.
MelV83
Member
1 year ago
@Katie46 I also had a nodule found on my lung. I am getting sent for a PET scan hopefully later this week.

As for the rest of my results- I have been upgraded to stage 3 locally advanced, but no distant metastasis at this point. So far there are at least 5 lymph nodes involved and most of those are relatively large. They are concerned it is moving into lymph nodes in my neck as my collarbone area has become tender but is still nothing compared to my armpit.

The surgeon wants to do breast conserving surgery but I’m not sure why if there is a risk of recurrence. I made it clear I wanted an aggressive approach to limit the chances of it coming back. Then we discussed the options and it looks like I will have the whole lot- chemo first followed by surgery and axillary clearance, then radiation in the armpit, maybe chest and neck. Then the hormone blockers.

I’ve asked for a port to be inserted for chemo so I go back to the surgeon next week to sign consent forms and hopefully get that sorted, then the cancer centre at my local hospital will call to organise all the chemo etc with my oncologist who I haven’t met yet. I do know that the Red devil will be my starting point so I’m going to research that a bit.

I’m feeling relatively positive about it all as my main concern was it moving to stage 4 but stage 3 made more sense based on what I already knew about the lymphatic system. Chemo will hopefully shrink my lymph nodes down as I’m finding sleep without medical assistance (painkillers/melatonin) hard, and even having my arm against my side is painful.
Katie46
Member
1 year ago
Hi @MelV83, good luck with your scan results. Don't be too freaked out if they send you off for more scans as a result. They picked up a few things on my initial scans, completely unrelated to my breast cancer, which they then had to investigate. They assured me at the time that it is very common to pick up other things when they do full body scans. I had a cyst on my liver (common), cyst on my ovary (common) and nodule on my lung (fairly common). Mine were all fine.
MelV83
Member
1 year ago
Scans were yesterday, all went well. Met a lovely lady with cancer in the waiting room for the bone scan and we had a nice chat about some of the side effects of the chemo treatment she had and her lovely headscarf.

Now I have the seemingly forever wait for the results on Monday. Keep everything crossed for me that it has stayed localised!

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