Newly Diagnosed and trying to cope

Suzie82 · January 2021

Hi my name is Suzie and I found a lump 1 week prior to christmas whilst checking my breasts in the shower. My lump is under my right breast just above the breast bone. I had one biopsy done with the results being inconclusive then they wanted to do another biopsy this one with a bigger tissue sample of the lump. The drs booked me in an appointment with the breast surgeon and I thought something was up. I was in woolworths shopping and my dr rang me and she said what was I up to and I said nearly finishing my grocery shopping. She said to me could I finish up and come down to see her. The feeling in my gut was not good and it was like I was in a trance at the checkout. I rang my son as he was driving me around and I asked him to come in to the shop and help me go through the checkout. I asked him to drive me to the clinic.My son came in with me and the dr met me at the door. I looked at her and I said it's cancer isn't it and she said come in and sit down. I started to break down and say no over and over. She held my hands and my son sat next to me he is 17. Calmly my dr said she thought it would be best to hear it from her instead of the breast surgeon the next day 2 days before christmas as he would be a stranger diagnosing me and she wanted me to feel more comfortable with it coming from her. My whole world was turned upside down. I had already nursed and cared for my friend whom passed away from cancer earlier this year and my uncle also had passed away from cancer. I said it isn't fair and cried. my dr held my hands and said we will get through this together and you have your son here with you also. The next day my friend took me to visit the breast surgeon. He said he is straight to the point and doesn't beat around the bush and will tell me straight and truthful. I have a 30mm lump in my right breast it is a particular cancer he scribbled it down but I can't read his writing so have to wait to get the correct name in my referral. He did say it is a grade 3 something. I will have a lumpectomy to remove the lump. Good news it doesn't have tentacles but it is a fast growing cancer. I then will start chemo for 6 months approximately 1 week after my surgery. Then commence radiation after this. It is going to be a long haul. good news is it is contained in my right breast only and all of my lymph nodes are clear. Whilst under in surgery they will double check my lymph nodes with this test they do. He said I will lose my hair. My friend and I sat there and cried and cried and I said why me. He said it is just pure unlucky. He said if I follow everything he says and do it I have a 75 percent chance of beating it and it won't return pending all goes well. I went back to my dr with my friend for support with me and asked if I could have something to calm me down 2 days before christmas being told this from the breast surgeon I felt like shit. It is slowly sinking in and I have an appointment with a breast cancer nurse tomorrow to ask any questions etc. I have full body scans this week also to rule out fingers crossed it isn't anywhere else. My son is in year 12 this year his last year I want to see him grow up and have a family and I want to grow old I am only 38 years old. Everything has happened so fast and it is so overwhelming. I just wanted to share my journey so far and if there is anyone out there that knows of any finanicial supports as I am unemployed . Can I apply for the disability pension or are there any sickness benefits? As much info that I can get with where to obtain wigs? I have booked myself into a look good feel good session in February and joined a group on facebook. Thank you all for taking the time to read my journey so far. Kind regards Suzie

Afraser · January 2021

Hi @Suzie82

It’s a hell of a shock. There’s a lot to get your head around and your head is reeling. Best to take it bit by bit, one thing at a time. No node involvement is a good start. Surgery will clarify a lot too. Everyone gets scared about chemo - it can be hard to take but some people get through it more easily than others, no reason I know of, just more bad luck for those who have a hard time. But I was pretty good, worked throughout and never felt ill. Plan for the worst and hope for the best! I didn’t have radiation (mastectomy rather than a lumpectomy) but most say it is much easier than chemo.
Do you have a breast care nurse? They can help a lot with a raft of questions like where you can access a wig library (often good to try before you buy!). A really short haircut can make falling hair a bit easier and a lot less messy. I am sure others will be able to advise about financial support and assistance that may be available. Do you have a friend who can accompany you to appointments, at least at first? It can be really helpful to have another pair of ears and someone to take notes. I am sure your son will do all he can to help but this is hard for him too. He needs to know that this is treatable and be reminded of your good prognosis. I had a 76% chance of recovery, so far (8 years), so good! It’s doable. There will be tough days, but it helps to keep putting one foot in front of another. You can cover a remarkable amount of ground that way! Best wishes.

PV123 · January 2021

Hi @Suzie82
Sorry you had to join this group, you have a lot of support on this network. It sounds like your son is very mature

and responsible.

Are you able to visit a Centrelink office and try to get an appointment with a social worker to ask them if they can help you. Please also call up Cancer connect to see if they can point you in the right direction. It is a scary time for you but please remember many others have gone through this process and come out successfully at the other end.

Leia · January 2021

Hi Susie. Welcome to this page- you’ll get a lot of help here.
you’ll be feeling so overwhelmed- try to take a few deep breaths! Everything is new and complicated and a rush- hard to take it all in. Do try to take someone with you to all your appointments, at least at this early stage.
I can’t help with information about financial support, but the breast care nurses are great. Probably others will post advice in that area. The public system is very good for breast cancer treatment.
I just wanted to let you know I’m thinking of you. Things are difficult at present- you have every right to feel angry, sad, tired, overwhelmed! It may take time, but it will get better.

arpie · January 2021

Hi @Suzie82
Welcome to the club that no-one really wants to join!

Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you. Nothing is off limits. We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you (eg the Young Woman group.)

Where abouts are you? City/town? We may have members nearby who are familiar with local facilities. If you are rural/regional, you can access payments to offset fuel & accomodation costs. You can add it in your 'profile'.

We all know the absolute turmoil that comes with the bc diagnosis .... Your whole world is turned upside down in a millisecond, as you navigate previously unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... it may take a year or two for your life to settle down.

Terrific that your son was with you when you got the news - try & have someone with you at all your important appointments - 2 sets of ears are better than one, as it is easy to miss some points whilst pondering what was just said, also the support is very important - even better if they can drive you to & from the appts! Also, consider recording your meetings on your mobile - so that you can go over it again later, if you have to, to query a statement, or just to have as a record.

It is totally 100% ok to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist. Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ...

Some of the bigger hospitals have Welfare Officers who may be able to help re your financial/pension questions.

Personally I found that it mucked with my BRAIN more than anything else! And sometimes that is very hard to control, as it has a mind of its own! Just try Keeping BUSY doing things is the meantime - the waiting really sucks!

.... Get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.

Try not to use Dr Google as there is just so much conflicting information out there, and every BC case is 'unique' and it may only confuse you!

Difficult tho it may seem - Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!) Just click on the link to add pics and posts ...
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner'
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
and if into your garden, a Gardening post as well!!
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

We have some posts here on what to take with you to the hospital, to make it 'easier' on you top of my list would be a small pillow to support your arm, post op. You should also 'hug it' whilst in the car on the way home, too, as any bump (eg gutters into the shops, petrol stations & your home) are REALLY jarring & can hurt like hell!

https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

Deep breaths, take one day at a time ..... All the best with your ongoing appointments. xxxx

Abbydog · January 2021

Dear Suzie82,
Everyone's advice has been excellent.
My treatment sounds quite similar, although I started with a Mastectomy with axillary clearance.
Re the wig. By all means ask re any available funding. The Breast Care nurse will probably be familiar with what is available. But most Chemo units offer the Cold Cap, you may ask about this prior to starting Chemo.
There are many ladies here, who have had success with the Cold Cap. They have kept hair and not required a wig. I had a little thinning that no one noticed. It's worth a try. You would know if it is not working after 2-3 Chemo sessions, as this is when hair usually falls out.
Everyone is very different with their response to all of the treatments you mentioned.
Some ladies do have a hard time. But there are some who have side effects that they do get, but find them manageable.
I was one of the lucky ones. No nausea, some fatigue but not excessive, and no skin reaction to radiotherapy.
Try to stay optimistic. Deal with each problem as they happen. Be aware of possible side effects, so that you can report them, as there may be advice and treatment available.
Write down questions as you think of them, ask your Oncologist and/or BreastCare Nurse these questions.
Thinking of you. All the best as your treatment progresses.

jennyss · January 2021

Dear @Suzie82,
Yes, some great advice and info above. I don't have anything to add, just

from jennyss in Western NSW

MicheleR · January 2021

Hi @suzie82,

Sorry for your difficulties. It is hard to get your head around and you dont have to process it all at once.

I wish you the best and send you a virtual hug.

Re financial there are a lot of services out there. The Cancer Council rang me one day and offered to pay $250 off a utility bill. Their nurses are very good and helpful. They probably know who can help. You can just give them a call and tell them about what has happened. There are different numbers for each state.

You can also look up a Breast Care Nurse in your area. Just use the mcgrath website to find that. Mine knew of some services and ordered my look good feel good pack from the cancer council.

Michelex

Cath62 · January 2021

Hi @Suzie82,

Great advice from all the ladies here. You are not alone here.

It is a big shock for sure. I had a grade 3 cancer cells. It means that they grew quickly so it's termed aggressive but it is not a death sentence. My cancer was 2cm in the right breast. I had a lumpectomy and chemo, radium and now I take tamoxifen. I was diagnosed 30 April and had 4 months of chemo and 19 days of radium. I had nothing in my lymph.

It is such a ride emotionally and such a shock. Glad you had your friend with you. Support is important.

A couple of tips from me:
* exercise is great if you can. It really helps on a number of levels. It helped me get through chemo and radium and it helps with the stress and fatigue of it all
* drink plenty water
* take care of your skin. Chemo is so drying
* mouth washes with salty water after every meal during chemo and use dental floss to help no mouth ulcers
* prepare a few meals to freeze for when you are not up to cooking
*ask for help from friends with housework and meals, driving you etc
* learn to mediate or practice mindfulness. It all helps.
* stay in touch with everyone here. We are all at various stages of treatment or beyond and this is a great place for support.

Locksley · January 2021

Hi @Suzie82
Sorry to see you here. All the advice the ladies have given is great. It's wonderful you have your son to help and support you. I wish you all the best with your treatment sending you a hug.

If you are in Melbourne Peter Mac public hospital has a wig library you can borrow a wig from. Social workers from hospital can help you. Do check in with centrelink and make an appointment to chat with a staff member.

I was diagnosed with BC in March 2020. Husband and I both lost our jobs due to covid in March and April 2020. I had a lumpectomy. Lump removed was 52mm and 4 nodes. All 4 nodes were cancerous. Then I had a mastectomy with 9 more nodes removed. Total of 9 nodes were cancerous. I had an aggressive treatment plan. I have had 6 months of chemo and I start radiation this week. I found I just took one day at a time. Rested when my body told me too. Walked on the days I could and learnt not to beat myself up if I couldnt do any more. Need to heal.

Stay in touch with everyone online. Having a safe place to chat, ask questions or even just to read others stories saved me a lot of tears and grief. xxxx

Brownowl · January 2021

Hi @Suzie82

I was also diagnosed before Christmas and have started chemo already.

I feel what you are going through and it’s a really crappy time.

Things I found helpful were to try and take things one day or treatment at a time. I’ve also found reframing the treatment process helps get me through. So I see chemo as a good medicine and a positive experience that is helping me get better. I’m going to try and have some fun with wigs and changing up my look a bit. Also looking forward to getting my free makeup kit. Next chemo I’m taking a self care kit, headphones and Netflix to try and relax a bit.

It sounds crazy but these are the crappiest days. Once I started treatment I began feeling a bit more in control. I also found these groups to be a great help when I felt a bit wobbly. I also found lots of support once I let family and friends know.

Feel free to reach out and best of luck with everything. You’ve got this. xo

Suzie82 · January 2021

Afraser said:

Hi @Suzie82

It’s a hell of a shock. There’s a lot to get your head around and your head is reeling. Best to take it bit by bit, one thing at a time. No node involvement is a good start. Surgery will clarify a lot too. Everyone gets scared about chemo - it can be hard to take but some people get through it more easily than others, no reason I know of, just more bad luck for those who have a hard time. But I was pretty good, worked throughout and never felt ill. Plan for the worst and hope for the best! I didn’t have radiation (mastectomy rather than a lumpectomy) but most say it is much easier than chemo.
Do you have a breast care nurse? They can help a lot with a raft of questions like where you can access a wig library (often good to try before you buy!). A really short haircut can make falling hair a bit easier and a lot less messy. I am sure others will be able to advise about financial support and assistance that may be available. Do you have a friend who can accompany you to appointments, at least at first? It can be really helpful to have another pair of ears and someone to take notes. I am sure your son will do all he can to help but this is hard for him too. He needs to know that this is treatable and be reminded of your good prognosis. I had a 76% chance of recovery, so far (8 years), so good! It’s doable. There will be tough days, but it helps to keep putting one foot in front of another. You can cover a remarkable amount of ground that way! Best wishes.

Hi Alfraser

Thank you for your reply. Yes it is a lot to get my head around and I am slowly thinking the same to take things bit by bit as I have so much information thrown at me. It sounds like you were very lucky that you didn't get sick from your chemo. Yes that makes sense plan for the worst and hope for the best. I met my breast care nurse today she was so lovely but she won't be staying she is a temp fill in but she gave me the names of the two nurses whom will be meeting soon. I asked so many questions but she was happy to answer the best she could. I have booked myelf into the look good feel good session here in my town and I am looking forward to meeting other people in my situation and talking to them and looking at ways how I can cope and feel better whilst going through my upcoming treatment. Yes I have a few close friends whom I have supporting me and they have been wonderful to me. I was brave enough to go to the breast cancer nurse appintment today by myself but have had my friends att my other appointmnents. Wow 8 years that is wonderful for you after your recovery you should be proud. I am proud of you also. Yes I will remind my son and myself that this is treatable and we will get through this together. Thank you for your best wishes and I hope that you continue on with your life with great success kind regards. Suzie82

Suzie82 · January 2021

Brownowl said:

Hi @Suzie82

I was also diagnosed before Christmas and have started chemo already.

I feel what you are going through and it’s a really crappy time.

Things I found helpful were to try and take things one day or treatment at a time. I’ve also found reframing the treatment process helps get me through. So I see chemo as a good medicine and a positive experience that is helping me get better. I’m going to try and have some fun with wigs and changing up my look a bit. Also looking forward to getting my free makeup kit. Next chemo I’m taking a self care kit, headphones and Netflix to try and relax a bit.

It sounds crazy but these are the crappiest days. Once I started treatment I began feeling a bit more in control. I also found these groups to be a great help when I felt a bit wobbly. I also found lots of support once I let family and friends know.

Feel free to reach out and best of luck with everything. You’ve got this. xo

Hi Brownowl

Thank you for your reply. Yes it is a crappy time and I found it very overwhelming with all of the information. Yes good advice thank you one day at a time. I have had racing thoughts about things ahead but that is my brain thinking over time from the whole overwhelming shock of it all. That is actually a good way to think that the chemo is a good medicine which even though it kills the good cells too it is fighting the bad ones and being the good medicine that does this. I will take that on board thank you. I too have registered with the look good feel good session which is upcoming after my surgery. I will try the cold capping it can't do me any harm anything is worth a try.. That's great that you take your own self care kit with your headphones and netflix to help assist you relax I will put together somethings to take during the chemo sessions to help me relax. Your right once we start the treatment we will get into the swing of things and feel mre in control of our treatment. I haven't told many people but I know news travels fast and people will see me etc so I can't hide it. I have the support from my friends and some family members so I will focus on that. I wish you all the best with your treatment and your journey and I am here for you also if you need to reach out to talk. best wishes xo

Brownowl · January 2021

@Suzie82 I’m glad I could give you some tips and support. Just to let you know I didn’t have much nausea with the first chemo and I got a pretty strong dose. I do get tired though but every day gets a little better. Everyone is different though. xo

Zoffiel · January 2021

@Suzie82 I think you are making a good start by documenting what is happening to you, day by day, right from the beginning. We all think the whole business will be seared on our memories forever, but it is concerning how many details we lose. It's a tough ride, and the levels overlap as you get further into it.

I had (and still have) a big folder with a diary in it and sheet protectors to store ALL my test results, appointments, specialist contacts, experiences in hospital. Who was on shift through your chemo/surgery. Who you saw in ED when it all turned to shit. The lot. All the stuff you hope the staff will know if you are admitted to hospital. Or if you have to recall someone's name six months (or sometimes six minutes) after you've met them and explain what they told you to someone who thinks you are high as a kite or deluded.

There is great comfort for some of us, and I suspect you may be one, in keeping track of stuff. As an old librarian who now splits her time between a museum and the building department, I'm a sucker for order when I expect that to be the norm

I still love my folder.14 years after my first diagnosis. I don't drag the original around to every appointment any more, but everything still goes into it.

It's early days, best of luck. Mxx

Afraser · January 2021

Keeping a journal is another option. It can help keep details of consultations, discussions etc for later referral, as @Zoffiel suggests, but it can also provide a good outlet (and as private as you want to make it) for down days and utter exasperation. Or for recording wins! Reading it back can be a salutary reminder that you have weathered worse, or a pat on the back for how far you have come! Best wishes.

Newly Diagnosed and trying to cope

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