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Intro of Pennyrose

Pennyrose
Pennyrose Member Posts: 6
edited September 2016 in Metastatic breast cancer

Hi,

I am a  very private person but by way of introduction to this group - I will try to fill you in on where my journey is up to.

What a journey ! I had breast cancer in 2009 and had the obligatory lumpectomy, chemo, radiation and 5 years of Hormone blocker drugs - all with their own unique side affects. But I did everything asked of me and eventually went back to work - just 2 days a week but I was quite happy with my semi retirement  - then my work gave me three weeks notice (retrenchment) - and at the same time (March 2016) I saw my dermatologist who removed some bits and pieces including a "cyst-looking" thing from the back of my neck. It was a glandular cancer - not a skin cancer - and I waited 13 days to be told the pathology showed it to be Breast cancer.

Not a nice way to start my retirement - but since then I have had scans to show the secondary breast cancer is now in the lining of my lungs, lining of my heart, various spots around my chest and one in the vertebra. I  began chemo  almost straight away and have seen a radiology oncologist but at this stage he does not want to do radiation.  Next week I am due for follow up scans and then the oncologist will tell me where to from here.

I am 100 klms from the oncology treatment and live alone, though I have a partner - he lives 100 klms away as well. He is always here to take me to treatment and appointments. My kids are not close by but are a great source of comfort to me . Yes I worry, mainly about those I care for. I suppose the uncertainty is the greatest issue. Do I make plans for some time with them? or do I make plans for a funeral?

My! I'm getting all self absorbed now and miserable.

Perhaps I will leave it here .

Hope you are all coping as best you can. - Pennyrose

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Comments

  • Leila34
    Leila34 Member Posts: 71
    edited July 2016

    Im so sorry Pennyrose :( I am new to this journey, so I cant offer much advice, but I think we all should definitely be making the most of our lives, however long that ends up being. Thinking of you xx

  • rowdy
    rowdy Member Posts: 1,165
    edited July 2016

    Hi Pennyrose welcome to the site. sorry to hear your news life keeps sending us curves. The site is good because you don't have to be with anyone and can keep as much privacy as you need. Hoping your follow up with the oncologist gives you some idea what is ahead for you.

    We all get self absorbed and miserable it is a hard trip to go on, that is why this site is good because we all get it. Take care xx

  • iserbrown
    iserbrown Member Posts: 5,540
    edited July 2016

    Hi Pennyrose - welcome to the site and I hope you find comfort in nattering in this space with like minded.  I am sorry to read your journey; crumbs it's a so and so isn't it!  Hopefully your medical team is spot on with the therapies on offer and your plans can be of a more positive nature.

    There are practical ideas on this site in the drop down boxes that may help as well as the My Journey Kit and the different groups within that you can join. There are also opportunities to participate in a Look Good Feel Better session or a time out holiday at an Otis foundation retreat.

    Take care

    Christine xx

     

  • socoda
    socoda Member Posts: 1,767
    edited July 2016

    Hi Pennyrose,

    Sorry to hear that you have had this recurrence. Wishing you all the best with your treatment and sending vibes for a positive outcome for you. If it helps I was talking to a lovely lady four weeks ago who had told me that she had breast cancer that then went to her bones and was given a very short life expectancy, that was over seven years ago and she is still working and enjoying life and living strong. As for planning time to spend with family - that can be such a joyful experience filled with laughter, love and feel good endorphins (if you have the right family, of course) I would simply be thinking about what a wonderful family you have and how lovely to have a catch up.  All the best, let us know how you get on with your oncologist. Xx Cath

     

  • jd48
    jd48 Member Posts: 484
    edited July 2016

    Hi Pennyrose

    I am so sorry to hear you have to deal with secondary breast cancer after everything you have been through.

    I cannot help you much as no experience there but there is a group on this site for seconday breast cancer specifically and I would suggest you join it as ladies there would have a very good idea of what you would be dealing with and I am certain they would be very helpfull

    I know it is all crushing and scary and confusing when they give us all those results and before treatment commences but just hang in there

    Hugs

    Jel

  • Pennyrose
    Pennyrose Member Posts: 6
    edited July 2016

    Thank you to those who have sent me good vibes - it must be working - its another day and the sun is shining and I will be OK.

    I have this little saying - " No magic potions.....No fairy dust...

                                            No-one to push you...No-one to do it for you

                                            Just one determined foot in front of the other."

    Cheers .....Pennyrose

  • Andij
    Andij Member Posts: 115
    edited July 2016

    Hi Pennyrose.  I was so very sorry to read about your cancer's return. It much have been a horrible shock for you. I so hope and pray that your ultimate outcome is great with whatever the Oncologist recommends. Also really heathy eating, exercise, as little stress as possible etc.  And Just a day at a time :) xx

  • primek
    primek Member Posts: 5,392
    edited July 2016

    My thoughts are with you on such a difficult  diagnosis.  And so much unknown yet as to responses and everything to chemo. I'd  definitely be looking at doing as much joyful stuff you can with family or things you like to do. My sister lived over 10 years with secondary breast cancer... whilst each case is unique it doesn't  mean treatment won't give you more time. Thinking of you and wishing you well. Kath x

  • Brenda5
    Brenda5 Member Posts: 2,423
    edited July 2016

    While it sounds ghastly, perhaps its not too bad in that chemo can shrink it back and give you loads more life yet. My dad lives alone and is undergoing chemo atm with bone cancer. He catches a bus and it takes an hour to get there, then he catches a bus home. He has a nurse who comes 3 times a week to check on him.

    My parents are as we speak today moving from the country into town closer to shops and medical so no more major driving. Even though they have spent weeks sorting thru old things and chucking or garage sale selling of things they still have heaps to move. Perhaps you could start going through old possessions and sorting something there too? As your health allows, no rush, and it might make you feel better with less clutter around anyway. I know I have heaps in my own wardrobe I am never going to wear again. I need a clean out too!

  • Brenda5
    Brenda5 Member Posts: 2,423
    edited July 2016

    Oh that probably sounds confusing, my mum and her husband live separate from my dad whom my mother never married.

     

  • Pennyrose
    Pennyrose Member Posts: 6

    Good morning all

    So the gods - or my oncologist,  has smiled on me - after 8 very solid doses of chemo - every 21 days - I have a reprieve!!

    I will have no more chemo till January. Woopee!! some 12 weeks off. Time to visit my grand daughter and have some family time without the rigors of chemo. I am very happy.

    My oncologist has mentione3d some new drug he may trial in January so I will not be having the chemo intra veinously, (?sp) rather in tablet form. I suspect it will come with its own set of side affects - but has anyone tried it? Of course that is stupid - I don't know its name yet. but he said it could be an option.

    Also wondering if there is a group (Secondary breast cancer) in the Tamworth region who meet occasionally for coffee or a chat? It would be nice to compare notes so to speak.

    Well I'm off to enjoy this lovely day. I think I will visit a friend who is having trouble coping with my diagnosis.....

    Cheers

    pennyrose


  • Ann-Marie
    Ann-Marie Member Posts: 1,142
    Hi @Pennyrose are you a member of the Metastatic group.
    You may find some members of this group in your region. I will also see if I can find something for you.
    Enjoy your day.
  • Brenda5
    Brenda5 Member Posts: 2,423
    My neighbour over the back street who I have never met is end stage secondary. She's pretty much in bed all the time now and doctors have her on 2 chemo tablets a day. Not sure what they are called but they do exist and month by month she is still hanging on to life.
     
  • socoda
    socoda Member Posts: 1,767
    Hi  Pennyrose, how wonderful to be given chemo free Christmas holidays  :). I hope your time spent with your grand daughter and loved ones is filled with every conceiveable happiness possible. How wonderful that your oncologist is prepared to trial you on different medications rather than just settle and be complacent. Keep in contact and I hope your news just keeps getting better and better. All the best Xx Cath
  • Marci
    Marci Member Posts: 46
    Hi Penny Rose,
    I also have secondary BC. Which was my initial diagnosis... all I can say to you is to take each day as it comes. It can be an emotional roller coaster. I found for me it is important to focus on the present moment. And trying not to think to far into the future. I try and read uplifting books, and stories about people who have beaten the odds. 
    None of us know how much time we have left ( cancer or no cancer ) And even the doctors can get it wrong sometimes, and many people outlive their expected timeframe. Also there are so many new developments when it comes to BC. You should become a member of the metastatic BC group. I have found that connecting with people who have a similar journey is very helpful. Wishing you the best in health! Xo