Well, there's that then, meta-what?

rosehavenrosehaven Lake HavenMember Posts: 11
Self diagnosed lump, x-ray, mammograms, ultrasound, infiltrating mass, biopsy, estrogen +ve, progesterone +ve, HER2 -ve with follow up labs, chest pain, enlarged nodes left arm, CT scan, bone scan, biopsy 2, marker uptake in sternum and liver.
Liver ultrasound tomorrow with view to biopsy, if unable, then biopsy sternum. Next appt., 20/12, with view to immediate hormone therapy, depending upon results, start chemotherapy.
"It's not good news"
"You have metastatic cancer"
I have no idea what that means.
I've gone from phase 2 infiltrating ductal carcinoma, to "metastatic" - google: stage 4 metastases in the bone and liver - cheers, pending results, in about a week.

All I can think about is, who is going to look after/ love my child if something happens to me? He has a delayed learning disability and autism spectrum disorders. He is a gorgeous boy, starts school next year, how much does he understand about what's going to happen to me on chemo/ hormone therapy. All I can think about is him. What am I going to do about him? What can I do for him?
Other single Mums, how did you deal with this fear?

Comments

  • rosehavenrosehaven Lake HavenMember Posts: 11
    Oh, and get your implanon removed.

  • primekprimek Broken HillMember Posts: 3,573
    I'm so sorry about what has happened. So many fears and unknowns. You may like to join this group for support.  

    http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

    Hope all goes well with the biopsy.

    Know we are here to listen and support you anyway we can.

    You may also find the hopes and hurdles kit useful. There is a lot of information on this link.

    https://www.bcna.org.au/resource/kits/hope-hurdles/

    Kath x
  • melclaritymelclarity Member Posts: 2,555
    @rosehaven I'm sorry to hear of your news! Its incredibly overwhelming not to mention thinking of your children. Im a single parent also of 2 and been through this twice in 5yrs. I also work with Autistic children 7yrs now. It is hard, but what you need is to get a really great support network together, however that looks for you. With him starting School, I'd advise them of your situation, and they will absolutely help anyway they can, even have suggestions of support. One step at a time, big breath and just do a day at a time until you know your path. Talk, talk, talk be it to your Breast Care Nurse, your Surgeon, Oncologist...anyone! even us here!! Ive go a wealth of help here, that I wouldnt have found answers to!! Hugs,Melinda xo
  • Ann-MarieAnn-Marie Member Posts: 1,158
    @rosehaven I wanted to share with you that we have a telephone support service available for our members. Here is the link - https://www.bcna.org.au/metastatic-breast-cancer/find-metastatic-breast-cancer-support/metastatic-breast-cancer-telephone-support/. @primek has mentioned a few other ways you can find support so if you need help please let me know. The members are very supportive and will be here for you.

  • CosetteCosette Member Posts: 655
    Hi @rosehaven. I'm sorry to hear about your diagnosis. How old is your son? We have a couple of resources for children. We have a comic book aid that parents use to help explain cancer to young children and we also partner with CanTeen to provide support for young people between 12 and 25 who are affected by cancer. If you'd like to order these free resources, give us a call at 1800 500 258 and we can post these to you.
  • Irish50Irish50 Skye, MelbMember Posts: 4
    Hi @rosehaven.  I'm sorry to hear about your diagnosis.  It's such a scary time and the waiting is soul destroying.  Sending you virtual hugs and strength.   <3
  • iserbrowniserbrown Regional VictoriaMember Posts: 1,811
    Hi Rosehaven - just to let you know we are all here on the forum to help you through where we can.  Meta-what along with a lot of other terminologies that we come to learn and specialists that you didn't know existed.  Wishing you all the best with treatment and the support network through here reading posts and joining groups will help you!  Have you got a breast care nurse as she will be your go to between your medical team and her. 
    Take care and sending you a virtual hug, you will get through this
    from Christine xx
  • socodasocoda LeumeahMember Posts: 1,540
    Hi Rosehaven, So sorry that you find yourself on the forum under these circumstances. As for your son, I don't know his level of functionality but does he need to know the intricacies  or just that mum is not well and what he can do to help you? Do you have a network at home that you can call on for assistance that your son feels comfortable with and that will give you time out if you are not feeling 100%? It's such a hard situation for you but we are here to try and help you as much as we can.  Xx Cath
  • Jane221Jane221 Central Coast, NSWMember Posts: 871
    Hi Rosehaven, what a terrible shock for you, with so much to process in such a short time.  I hope that some of the great suggestions made above are of help to you as you navigate your way through this.

    My children were 8yrs and 13yrs at the time I was diagnosed and there were a few things that helped me ; 1) Letting the schools know and communicating with them throughout my treatment - they were able to keep an eye on both children and help them out when they were struggling and both school communities were generally supportive with meals, hampers etc. 2) The Cancer Council's booklet; Talking to Kids about Cancer was an excellent guide and helped us to work out what to say at their individual levels. Hopefully your breast care nurse will also be able to point you in the direction of local support services as there are organisations that can often help with a lot of the little things that might need doing, or to access respite services for you or your son. Sending hugs, Jane xx
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,424
    Hi Rosehaven, I have 2 boys with Autism... so I understand the extra stress of explaining things to him.  Do you already access respite services for him because of the Autism? if so get in touch with your case worker they will help with what extra helps you could access. My boys were older but I kept it to the KISS way of doing things keep it simple stupid.... as @socoda
     said  just telling him simply that you are unwell might be all he is able to cope with.  Take it One day at a time... 
    hugs and energy to help you navigate this path. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,424
    PS meant to say I am a single parent also :D 
  • rosehavenrosehaven Lake HavenMember Posts: 11
    @Soldier Crab, because of the NDIS roll out, I don't have access to respite, the providers have all folded, amalgamated, and must use my son's NDIS payments to give him "community access" which is one of his funding goals but is not covered by his funding. F if I know why. I've asked for an urgent review which means I'll probably be contacted by the end of January next year. Mean time, Central Coast Commonwealth Care Link Emergency Service has been a "grateful" send, and been able to find support workers to take my son to school and O/T on as little as 12 hours notice so I have been able to get further tests completed.
     I haven't yet had a chance to talk to his O/T about how to explain what's happening, to my son, nor to ask her how much she thinks he gets it. Because he's completely no language spoken or signed, there is a disconnect between what we say/do and his cognition level. Just another thing to work on before everyone closes down over Christmas. It's good to know someone else understands what I'm saying because I had no luck explaining it to my oncologist, she did (however) offer me the psychology services for children of parents with cancer. I don't know if that will help. Kinda concerned introducing my son to another new person in a hospital setting will only make him more anxious and really not up to having to change sheets every day for a week, nor cleaning puddles out of the carpet. I love my son, but there really is only so much pee I can deal with in a week. I know you'll get that too, without feeling sorry for me, which some people do, which I don't need. Sympathy is fine, empathy is better, a sense if humour is priceless.
    12:30am, awake again, not able to settle, so it was really great to read your post. I reckon we'll chat often.
    Cheers beautiful woman.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,424
    @rosehaven
     oh how I get this ... I know you'll get that too, without feeling sorry for me, which some people do, which I don't need. Sympathy is fine, empathy is better, a sense if humour is priceless.
    I turned up to chemo in Onesies  I made people laugh because without humour we parents of ASD kids would go insane. 
    I had an early night ..... 
    Feel free to inbox me. :D hugs and laughter 

  • melclaritymelclarity Member Posts: 2,555
    @rosehaven I totally get everything you are saying! Its so hard being a single parent and especially through diagnosis and even more challenging in your circumstances. I work in an Autism Specific School in Melbourne and Ive had the pleasure of working with all degrees, and lots of non-verbal! I love my job!!! I love these kids! and have worked extensively with parents over the years and who are equally beautiful! I think it will help once he hits school, well I have found with students coming into our specific school. Rapport is No. 1 and establishing communication, we work with Pecs' picture exchange. I think alot of people are well meaning, but do not get it at all, when it comes to Autism. I really feel once he's in School and you start that journey and working with the Teacher, you'll feel very supported and who too can indicate the level in which he comprehends and understands. They also have OT's, Speech therapists all on referral within the school, and its great because every child is different and requires different things. The other major factor we work with is behaviours, due to an inability to communicate or self regulate it causes frustration and challenging behaviours. 

    Keep us all posted as your tests go, and your path is clear and anything we can help with...OMG Humour is everything! I think we can all agree there!! 

    Hugs Melinda. xo
  • ShareShare Member Posts: 217

    @Rosehaven, so sorry that you have joined our forum but a big welcome to you. I have said it before - it's the club that nobody wants to join, but, hey, once you are a member you find solace in people who just get "you".

    @melclarity and @soldierCrab have touched base with you on the forum and have an understanding of you not only as someone with a bc diagnosis but who is: a single parent; child/children with autism (or in Mel's case experience with children on the spectrum).

    What a b**ch this whole NDIS roll-out is - meant to make things easier for those who need access to the services - promises and plans are one thing but delivery is something entirely different. It is never a good time to embark on something as huge as this and of course your diagnosis in the weeks leading up to Christmas and with services closing down for the break just magnifies things.

    I noticed your second post made a reference to Implanon. Very interesting -  I had Implanon inserted in 2002 and in 2003 I was diagnosed with early bc. At the time I did ask the question as I had previously been on the pill but as it had not been available for long, there was not a lot of evidence to contradict this.

    Last year I was diagnosed with mbc in the bones - will be thinking of you over the next week especially with your next apt on 20 Dec.

    Please feel free to vent, ask questions etc - the forum can be a good place to be.

    A big virtual hug to you and your little boy.

    Sheryl xxxx   

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