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
Sorry everyone for dropping off the face of the earth- things have been super difficult for me and I have kind of withdrawn into myself a lot.
First update since the last one I posted was that back in January I had a rather dramatic time getting port bloods taken and ended up with chest pain, a code blue called on me in the chemo suite, rushed to emergency with several days in hospital and left with a bad dose of covid for my trouble! During this time I also found out that I have arthritis in most of the major joints of the body- shoulders, sternum, hips and knees. The intense pain I have experienced almost daily since has finally been managed with heavy painkillers, which I take almost every day just to function. My right hip seems to be the worst, so it seems my symptoms were exacerbated by the paclitaxel.

One of the nurses was trying to help me figure out why this pain might be happening and found a study on how the pain can be an early sign of peripheral neuropathy. Well, 2 weeks later I started getting those symptoms- mainly in my right thumb and forefinger to start, but it has spread. I have also developed motor neuropathy in my left leg and have had to swallow my pride and start using a walker. I finished chemo a week ago today, managed 11/12 doses and refused to do any more. The last dose has turned out to be a doozy and I have been very unwell and the pain has not reduced as I had hoped.

One final bit of not so good news- my income protection claim was denied. The reason they stated was because the department revoked my authority to teach due to my medical condition, and I was not permanent nor had a contract that they were under no legal obligation to pay. I have been beyond devastated and my mental health went from coping pretty well to really being on the edge of a crisis. The isolation I have felt as even my family has stepped back in their level of support has been another blow when I needed it least. I have managed to get into the oncology psychologist to supplement my private one, but that doesn’t stop the bills coming.

I just honestly don’t know how much more I can take, and I want off of this terrible ride now. How am I supposed to earn money when I am medically unfit to work, and yet don’t qualify for income protection according to a bunch of boxes that make it not their problem?
- Mez_BCNA
  Community Manager
  1 year ago
  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.
- arpie
  Member
  1 year ago
  SO sorry to hear of your experiences MelV83 xx You've had a horrible 4 months xx. Sending you some big virtual hugs xx
  
  Well done on completing so many chemos - I hope the neuropathy reduces over time .... keep using that walker, until you don't need to - so you don't have a fall. I had a smaller indoors one for my husband to use, as well as the 'outdoors' one, so he was supported, moving around the house.
  Do you have a Breast Care Nurse that you can chat to about treatment for the neuropathy & arthritis pains? They really are quite debilitating :( Sometimes, a mix of an anti inflammatory and panadol or similar (taken 4hrs apart) can help - but you MUST eat something when taking the anti inflammatory. xx
  
  Definitely contact the helpline here 1800 500 258 (Mon-Fri 9am-5pm) and the Cancer Council too, as Tri has suggested, as they should have contacts as they would be dealing with this (or similar) on a regular basis. xx
  Hmmm, I wonder if there is an Ombudsman 'in that area' that can look into your Income Protection claim being denied as well?
  Make haste slowly - concentrate on getting better & take each day as it comes xx
  take care & wishing you all the best xx
- Tri
  Member
  1 year ago
  HiMelV83 it sounds like the past few months have been incredibly tough, you must be feeling exhausted and depleted. Stellar effort on completing the treatment you needed as far as you could in the face of everything.
  The income protection decision sounds unwelcome and complicated. Might you call BCNA’s helpline for direction to services who are across these sort of issues when your energy returns.
  NSW Cancer Council has a service that connects people who need specialist legal or financial help with free professional advisors. An advisor might be able to look into your options to seek a review, and consider whether or not the way in which your employment ended was in line with your rights. Do a search for ‘legal and workplace’ on Cancer Council’s site.
  Take care and sending you all good wishes for recovery.
Tri
Member
1 year ago
hi @MelV83 thinking of you today and sending you lots of virtual hugs. 🌸🌻Glad your procedure to insert the port was relatively uneventful, they are good things for treatment day. I remember being surprised a few days later how tired I felt after the port procedure, so take your time resting up if that’s possible, especially with having had your treatment in quick succession.
Abbydog
Member
1 year ago
I'm terribly sorry for your diagnosis. It is quite similar to mine.
I was 61 on diagnosis. There is a sub-group on this BCNA site called 'Young Women"
This could be helpful to you. Just click on Groups at the top of the screen and ask to join.
As a contract worker, do you have Income Protection within you superannuation?
It could be worth asking.
There is also a group in Adelaide that you can attend events in person. Eg some morning teas and lunches.
You may have already been told of it.
It is via Facebook and called 'Adelaide Breast Cancer Friendship Group'
Katie46
Member
1 year ago
@MelV83 I hope your chemo went better this time.

My scalp was sensitive in places when my hair started coming out. I got my husband to buzz cut it, and it was more comfortable.
arpie
Member
1 year ago
xxx Thinking of you xxx. Do you have some nice head gear to wear .... tho now it is summer, it may just be too hot to wear them? Often the Oncology centre has some that have been donated, to try on and/or keep?

That's a Lovely idea re your hair for the kids xx

All the best for tomorrow's chemo - maybe ask about the 'pain killer patch' to put on the port site before they insert the needle, as there is a little 'prick' ... I used to put one on for hubby before his chemo. (They gave me a few, so I could put it on before we got there, so it was already numb.)

take care & hope it all goes smoothly for you this time xx
MelV83
Member
1 year ago
Just a little update from me:

Port was inserted under general anaesthetic this morning. No pain at the port site but my neck has been really sore, kind of like I pulled a muscle all day. Slept away the afternoon (and naps are definitely becoming a regular thing now that I’ve started chemo), but was absolutely ravenous when I got home so made sure I ate a good lunch, since I likely won’t be feeling hungry tomorrow.

My hair has started coming out thick and fast- I had thought about shaving it but my scalp is so sore and sensitive that it hurts to even brush my hair so I didn’t want a hairdresser to be less than careful and hurt me. So instead of brushing my hair I just run my fingers through my hair every so often and come out with clumps. I’ve probably lost about 2/3 of my hair now.

In terms of how I feel about that I expected to get a little upset about it but looking in the mirror things look relatively normal still, less thick so maybe that will happen. In the meantime I’m kind of fascinated with the process and how some parts of my hair are definitely not ready to go and yet other bits fly
out the second I touch my head.

Both my kids asked if they could keep some of my hair to touch when they felt sad and so I made a couple of wefts for them to keep. This has helped them deal with the first real physical change- my son is autistic so this gives him something tangible.

Second chemo tomorrow and my oncologist wants to make the dosage rate really slow since my heart went a little crazy last time and mystified everyone. She wants to make sure it is definitely an allergic reaction before she upgrades my dose of steroids. It’s a hot one here in Adelaide tomorrow so hopefully it’s comfortable and less troublesome to have it with the port in.
Tri
Member
1 year ago
That is an epic first experience @MelV83 ! Glad to hear you’re getting a port in. Hope you can take care and rest up as you’ve been through a lot. Not sure if you’ll need it but I used to get a bit dehydrated and discovered hydralyte was a useful thing to drink a couple of times a day two or three days after treatment; it gave me a bit of pep.
Katie46
Member
1 year ago
Hi @MelV83, oh wow 😮

From someone who has small and wriggly veins, and who stubbornly persisted with the canula the whole way through, you've made the right decision with the port.

Take it easy and look after yourself.
MelV83
Member
1 year ago
@arpie I have the port insertion booked for the 5th, the day before my second infusion. I’m going under general since it needs to go in on the left. Apparently that’s very quick and the wait list is usually 3 months. Thank goodness! The bruises today are literally the darkest purple ones I have ever had. I have 3 more of the AC before scans to check if we need more. If not, then I start the 12 cycles of paclitaxel.

The metallic taste is truly gross- kept having that through the infusion and it persisted overnight as well. Had the heart pounding again today that felt like I’d been running whenever I did anything other than sit, but I had some things to do today so I kind of did them in stages with rests in between. 45 mins of rest laying down seemed to do the trick. I get bored doing nothing so this felt productive but still balanced.

My kidneys have definitely been working because my urine is already looking normal again. I had a little nap this afternoon so hopefully I sleep tonight lol!
arpie
Member
1 year ago
Oh my gosh @MelV83 - you really kept them on their toes, eh? I hope they get those pre-meds sorted so you don't get those heart issues again! :( I am so sorry you had trouble getting the cannula in too.

How many infusions are you having? .... If the vein thing looks like becoming an issue definitely look at getting a portacath - it is used for taking your blood as well as giving you the chemo infusions - When do you see your Onc again? It is usually put in under a 'twilight' sedation. ..... Before each chemo, A pain killing patch is usually put on before you get there, to deaden the area for the 'prick'. My husband had it & found it much better than th 'picc line', which is the alternative if veins are tricky to find (his got an infection.)

When is your next infusion?

Take care & big hugs xx. Drink lots of water over the next few days, to help flush it all out xx. Sleep when you need to, eat when you can xx. It doesn't matter what you eat - so long as you do - get stuck into all your favs xx

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