All Alone

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  • Tinks
    Tinks Member Posts: 234 ✭
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    All the best for tomorrow. Tinks xx
  • lrb_03
    lrb_03 Member Posts: 1,267 ✭
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    It's almost the day, and I just want to wish you well
    xx
  • Carrie2020
    Carrie2020 Member Posts: 2 ✭
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    @ayrhaven Hey just getting used to this forum but hearing you loud and clear. Its tough being in a rural setting and although i no longer have our farm ( separated 2-3years ago ) still live in a rural setting my family are in the UK and my main friends are 3 hours away or more.
    I have had my surgery, but now faced with decisions of chemo, radiotherapy and hormone treatment etc etc but living so far away having animals to look after plus need to work.. it all seems impossible.
    At least you have the calving over with as you say that's a big hurdle. 
    Today is Wednesday so must be your surgery day so thinking of you. Not sure what type of surgery you are having but hoping your recovery is quick... that's also tough when people tell you to rest and not do too much!! it didn't happen for me when you have property and work you just have to ( my surgery was 3 weeks ago back to work after a week)

    Its all shit really but i take some comfort in reading posts from people that have traveled this road.
  • iserbrown
    iserbrown Member Posts: 5,552 ✭
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    Best wishes and plenty of rest as your results will be in soon with a defined path of treatment. 
    Take care 
  • Caz1
    Caz1 Member Posts: 382 ✭
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    Great  news , good to hear you are ok....understand the scared bit, mines tomorrow and I’m scared and a bit  sad  :/
    take care, big hugs 
    Caz x
  • Shellshocked2018_
    Shellshocked2018_ Member Posts: 283 ✭
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    Hi ayrhaven, welcome to this informative group of people who have been there and know exactly how you are feeling.
    Some coping ideas that worked for me as my brain was always in overdrive and I couldn’t get a good night sleep.
    I did a mindfulness and meditation short course, that help me keep in the moment and learnt some real good breathing techniques, yoga, lavender oil on my bed linen, massage.
    With COVID 19, if you have access to the internet there may be something on line you can tap into regarding meditation, relaxation music .
    Listening to any relaxation music and just concentrate on your breathing, taking deep breathes in holding for 5-10 counts and pushing it out 5-10 counts, do this for as long as you need.
    I also got in contact with my GP to get something to help me sleep, I was prescribed something which helped me get some sleep, I found with sleep I was able to cope better during the day.
    Can you arrange FaceTime with family and friends on a regular basis? I lived on social media during my illness as I to live on a rural property and my closet neighbour is a few kms away, and no family or friends live close by.

    Most friends and family found out about my cancer via social media, except for my immediate family which was personal.
    Everyone does things differently, you do what you think is best for you. 

    Sorry to hear about your husband, I’m not sure if you’re able to access help with your husband for a home care package from the government.
    It sounds like you’re a strong woman , but it’s time to look after yourself during this time. 
    Do you live in a close rural community who can assist you with the farm? I have found living in a rural community people are so lovely and willing to help where they can.
    I have an adult daughter with a disability, so I know how you’re feeling in regards to looking after your husband, when you really need to be putting all your energy in looking after yourself.
    Lean on your GP heavily to help you get help for your husband, and for you as well, not sure if you know your neighbours well enough, to ask if they could help with your livestock and any essential farm work that is required.
    Hopefully you have a good Breast care nurse who can guide you through this anxious time.
    I found waiting for results are the pits, I use to keep myself so busy that I didn’t have time to think about it, I use to go for a ride around the property on my quad, like you just sit on the quad and watch the livestock, breath in the fresh air, wow I wish I had as many acres as you though.......
    Ive only got 27 acres.....  listen to music, sing along out loud, I didn’t have to worry about neighbours lol........

    Being positive is what will get you through, you have been through so much in the past, you can get through this as well.
    Keep safe during this COVID 19 pandemic, it’s a bonus being on a property during this time away from everyone.
    Im here if you want to talk anytime, you can even send me a private message and we can have a chat. 

    You are STRONG you are WOMAN !

    Sending big hugs and positive vibes your way, take care and be kind to yourself xx

  • ayrhaven
    ayrhaven Member Posts: 17 ✭
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    Feel not too bad after surgery, except for TELSTRA giving me a hard time.  Phone is not working properly.  I told them to fix it today or I'll be back. (answer from them is will be fixed tomorrow)    I thought I would send you ladies something that I did for pink ribbon  month.  This was done before I was diagnosed.  My niece went through BC so I thought I would join in the activity for pink ribbon month.  Now I will get involved even more if I can.
  • Ahnn
    Ahnn Member Posts: 42 ✭
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    Congratulations @ayrhaven on making it through this major hurdle.  Take it easy as you can and try not to push yourself too hard. Easier said than done. Waiting for results feels like forever but it's only next week.  Best of luck for good results 
  • ayrhaven
    ayrhaven Member Posts: 17 ✭
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    Here is a picture of the kelpie dog coat I did for pink ribbon day.  Needs some work still, we also had a small stall to raise money for BC.  With my new machine on the way hopefully I can do more. My way of helping

  • ayrhaven
    ayrhaven Member Posts: 17 ✭
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    Hi All,
    Got my results today and wow, what a kick in the guts.  The lump was bigger than what showed on the mammogram, it was an aggressive lump.  I now face chemo and radiotherapy, not sure which is first need to see oncologist.  Can anybody give me some tips on how they coped with there treatment.  I am trying to keep a positive attitude by thinking I can survive this, I need to survive.  How long can chemo/radiotherapy take and what do I need to do in the meantime.
    Ayrhaven
  • Tinks
    Tinks Member Posts: 234 ✭
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    @ayrhaven, I’m with you, we are with you. You CAN survive this, you WILL survive this.

    If your pathway is typical, you will probably have chemo first. My chemo was 4 cycles of epirubicin and cyclophosphamide, fortnightly, and 12 cycles of paclitaxel, weekly, then radiotherapy 5 days a week for 5 weeks. But it all depends on your personal results. So my lot after surgery took 20 weeks chemo and 5 weeks radio. Usually there is a short break in between the two.

    In the meantime, there are lots of important things to do. First get prepped, there is a lot on this site about what to do. This will help give you something to focus on while you wait to start the next phase.

    I suggest to give the BCNA team a call, they can take you through things and you can get a plan together. For me, a plan helped get some structure into what was happening so I felt more in control as a result.

    Lots more to say, ask away! I know that the wonderful people on this forum have your back. 

    Let’s do this together.

    lots of love Tinks xx

  • Zoffiel
    Zoffiel Member Posts: 3,372 ✭
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    Bugger. Bigger lumps than expected are, unfortunately, all too common. Particularly if you have lobular BC. The actual pathology will determine what sort of treatment you will have. The sequencing changes according to all manner of circumstances. Do you know if you need more surgery?

    Chemotherapy usually comes first, but then sometimes it doesn't. You really wont know until you speak to your oncologist.

    On the topic of oncologists, it is important to ask what options you have there. It is possible you have access to a public service--do find out if that is the case as we are sometimes not fully informed about all available services. Surgeons tend to follow their own referral pathways, and that can be very expensive if they send you to a private practitioner when there is a public option.

    Chemo itself wont cost you anything, the appointments with specialists do.

    Trying to prep for these things is both stressful and, frequently, pointless. It sounds like your main concerns are going to be your husband and your farm. Concentrate on putting a few different  plans together to make sure you have some support there. You won't know how treatment will affect you until you start. It is quite possible you will cruise through this, or at least have an easier time than you expect. Chemo is not like it was even 10 years ago and many people have few, and manageable, side effects.

    I would recommend getting a port installed if it is possible or appropriate for you.  They are not fail proof, but can greatly improve your chemo experience. 

    Get yourself a good big folder, keep copies of absolutely everything in it and take it to every appointment. Get copies of all your test results, collect business cards, write down peoples names, when you saw them and what you spoke to them about. Keep records of any side effects and what was done about them. I know this sounds like a lot of work, but it surprising how often results and reports don't get forwarded to the right people so it pays to take control of that yourself. You think everything is going to be seared into your brain and you will remember it all, but this is going to be a long haul, so keep good records.

    If you haven't already connected with a breast care nurse, chase that up straight away. they can be a godsend.

    Above all, take time for yourself. That might mean scheduling a daily walk where you don't think about anything except putting one foot in front of the other for a few kms. Good luck. Mxxx
  • Sister
    Sister Member Posts: 4,960 ✭
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    As @zoffiel says - all too common.  I started with a lumpectomy and maybe rads, then ended up with a second surgery for mastectomy followed by chemo and radiation.  It does take the wind out of you but it is doable.  Ask about a port - it's well worth it in the end.  I went private for oncology as it was covered by health insurance but public for radiation (and that was as good as any private clinic could provide).  Radiation is not covered by health insurance and it can cost thousands.  I can't remember everything I got in preparation for chemo but you will find lists on previous posts here (beginning of 2018 for sure as that was when people helped me).  It's good to have the stuff on hand particularly if you're not in easy reach of supermarkets/pharmacies.

    I found this in an earlier discussion - info I had passed on to someone else back in 2018 based on what I had used:

    "Before I started, many members shared there must-haves list with me so I could stock up in advance as we don't live near any shops or 24/7 pharmacies.  You can probably find the post - would have been February I think...  But here is what I have found useful so far to have on hand:
    Sorbolene (for dry skin in many areas)
    Dove soap
    Very soft little kids toothbrush
    Biotene mouthwash
    Baby shampoo and afro comb to take care of your hair if you're keeping it - I started with cold caps
    Coloxyl with Senna
    Movicol 
    Pocket sized sanitiser lotion
    Large antibacterial wipes for public loos
    Pocket sized wipes for whenever
    Mylanta double strength for indigestion
    Truckload of Panadol for headaches
    Flushable bottom wipes for when things get tender.
    I haven't used all things all of the time but everything except the Movicol has had more than one go and most have been regularly reached for."

    I would also suggest that you make sure you have a decent thermometer on hand at home.

    If you're not going to try cold caps for chemo, don't rush out and buy a wig as they are expensive and you may find you hardly wear it..  There's lots of stuff online for interesting ways of tying scarves and with winter coming up (and isolation, of course) you can hide under hats if you want to.  If you do feel the need to wig it, find out if there are any wig libraries you can access.

    If you haven't done so already, you may find it useful to collect and collate your medical notes and reports.  They pretty quickly assume a life of their own and start multiplying.  I got myself a zip-up folder from Officeworks (and very quickly updated to a lever arch version) plus some plastic sleeves and dividers.  I kept everything in there including appointment cards and prescriptions so everything was together and it was portable.

    As for timeframe - it will depend on the chemo and whatever is going on with isolation.  I had AC-T and that took 6 months.  4 x AC every 3 weeks then 12 x Taxol every week.  A couple of weeks rest after that followed by 3 weeks of radiation (15 doses).  Pretty standard treatment.  How you tolerate it is an individual thing and you won't know until you start but please don't go on what you see in the movies as a guide.  Medications are pretty good at handling side effects as long as you let your onc know what is going on.  I suffered in silence for the first few days as it was a weekend and I knew no better.  Once the onc knew how bad I was feeling, he prescribed better meds that got me through it.  Given that, some people sail through the experience (well, perhaps not sail, but they cope well).  Keep a running record somewhere handy - times, symptoms, medication, temperature...  It helps you keep track of things, provides a guide for next treatment, and helps to report back to your onc what has been happening. 

    Also, think of practical things you may need help with.  It's not helpful if you get given a freezer full of meals you don't want when really, what you need is a lift to and from the hospital, or someone to feed the animals for the first few days after treatment.  That way, if people say they want to help, you have something immediate to suggest.  My lifelines were the friends who picked up my kids from school without concern or who stepped in to drive one across town to a sports carnival while I was having treatment.

    You will probably find you have more questions as things become clearer.  The most important thing for you to remember is that this can be done - it's not fun but you will get through it.  And take care of yourself.
  • ayrhaven
    ayrhaven Member Posts: 17 ✭
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    My journey is going to be a long one.
    I have spoken to onco and he has put a few things in place.  Before I start treatment he wanted a full body scan, that scared the daylights out of me.  I was worried they would find it elsewhere.  That result can be according to the surgeon all ok.. What a relief.  Then I need to have a port put in, that has already been done.  I see the onco on Monday to discuss the treatment plan and the type of cancer it was.  The suggested treatment is 2 chemo's, 3 weeks apart for 4 cycles, then single chemo for 12 weeks, then more surgery, then radiotherapy.  I will also have a further injection for 12 months(not sure what it is yet) and I will have medication for 10 years.  I am pretty anxious about it all but I just have to go with the flow.  The onco scares me because he might tell me something I don't want to hear.  I just need to remind myself this is just another hurdle I need to jump over.  Is it advisable to have someone take you to your treatment and how long can it take.
    I look forward to some tips.
    Ayrhaven

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