Newly Diagnosed and trying to cope

Suzie82

Zoffiel said:

@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

Zoffiel said:

@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

Hi Zoffiel

Thank you for your message. Yes I agree with you with things getting so overwheling sometimes we forget even the smallest important things which can be most helpful maybe now or later down the track.This is one of the reasons I wanted to start my journal for my journey. That's awesome that you have a folder to store all of your results and letters etc. Never let anyone make you feel like you don't matter because you do we all matter. Some people just don't understand what it is like as they have not been through what you have and haven't walked in your shoes as the saying goes. You should be proud you have things in order as it is important and it shows you are dedicated and focussed. How ever you choose to spend your time  whether it be in the museum or the building department it is what ever  is most comfotable or enjoyable for you and what works best for you. Thank you for your kind wishes and best of luck to you also xo

Suzie82

Afraser said:

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. 

Hi Afraser

Thank you for your message. I have started my journal and found it great to write down my journey and how I am feeling so I can have it for a reference and look back if I need to Yes recording wins would be a most positive one! Yes also agree reading it back you can see your achievements and what you have been through and where you are now and let it be a positive to read if your having a crappy time look back on the positive days. Thank you and best wishes to you also

Suzie82

Locksley said:

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

Hi Locksley

Thank you for your message. I want to see this journey as a challenge life has thrown at me I know it isn't nice being here in this position but I have to learn something from it and become stronger in many ways. Thank you for your wishes and I also send you a hug to you also. Unfortunately I am not in Melbourne but that centre sounds wonderful. I have booked mysefl into the look good feel good session and I spoke to the breast care nurse and she informed me about the wigs they can loan but I would like my own for personal reasons. I am going to give cold cap a go hey even if it doesn't work it is worth trying and I willl be brave. Yes I will be looking into the centrelink option as well further, I am so sorry to hear about your job losses for yoursefla and your husband through covid, I am in the same position unfortunately, Wow you have been through so much already you are very brave and strong and a fighter and I admire you for that. Yes I agree taking one day at a time is a good thing to do. I wish you well with your treatment and I hope it goes in your favour. I will stay in touch thank you and yes it is a great place to ask questions and listen and learn. I am proud of you for walking when you can as I have been told that exercise is a positive thing. All the best and thinking of you xo

Suzie82

Cath62 said:

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.

Hi Cath62

Thank you for your message. Yes the ladies who all have kindly resoonded including yourself ave given me some great inspiration and advice and I am truly greatful to you all. Thank you for the information about the grade 3 terminology I haven't read much on it yet but mine is grade 3 also. I have read a little on tamoxifen. My dr said I unfortunately from memory can't have any hormone treatments due to mine not being that kind. You are lucky to have nothing in your lymph nodes. So far my tests say I don't either which is good. Thank you for your tips and advice I will take them on board and yes I am learning that this is a great place for support thank you xo

Suzie82

PV123 said:

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.  

Hi PV123

Thank you for your message and yes my son is very mature and responsible at times but still young at heart. I contacted the cancer council today and they have put in an application for me to seek a financial planner and get some assistance and advice. Yes it is a scary time but I have found everyone on here to be so helpful and lovely and kind to me and I truly am greatful

arpie

@Suzie82 ... when I was going thru all my surgery and stuff 3 years ago, I was many thousands out of pocket, even having to pay $500 towards my own pathology bill, which I still can’t really understand!  I was really stressing out over it all.

I had a shocker of a day at radiation and just broke down and sobbed.  I couldn’t stop.  They got the welfare officer in and she was as good as a counsellor!  She talked me thru what I Was going thru and could see that my husband’s situation (dementia) was also impacting my treatment (he’d had an accident the day I started rads so I was also looking after him as I went thru rads) and then that pathology bill just tipped me over the edge.  She said the Cancer council had the discretion to pay a utility bill up to $250 to give me a ‘break’, and she arranged for my power bill to be partially paid for, which was a huge relief for me. 

Don’t forget, after your active treatment is finished, you can  also apply to the Otis Foundation for a ‘free holiday’ (just take your food and clothes and transport) to gibe you and your family a decent break.  Wonderful people allow us to stay in their fully equipped Holiday Homes!  I stayed at the Thredbo one.   Read about it here: 
https://onlinenetwork.bcna.org.au/discussion/22905/otis-foundation-holiday/p1

A link to them:
https://www.otisfoundation.org.au/directory

Take care and well done xxx