So out of control

Kim22Kim22 Member Posts: 8
edited April 2015 in Newly diagnosed

Hi. I am new to this site and just as new to doing anything on-line!  I have recently been diagnosed with HER2+ BC; have had lumpectomy & gone back for re-excision to get clear margins. I am told will likely need chemo, Herceptin & radiotherapy.  I have oncologist appt Tuesday week and am struggling to keep myself together. I have wonderful family, but I am usually the strong one, the go-to person, the one with the answers - I am surrounded by people, but have never felt so alone and scared of what is coming up.  I have a boss who thinks this is all in my head, that cancer is something you wish upon yourself for attention and that living a mentally correct lifestyle is the only treatment needed. I have had a massive argument at work when I first told her of my diagnosis, how do I now tell her its looking like a year of treatment?

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Comments

  • Robyn WRobyn W Member Posts: 1,932
    edited April 2015

    Hello,and welcome to the online network:) This is the place that you are going to find all the support and help to get you through the coming months.I was diagnosed 18 months ago.I had mastectomy,then chemo.Now I am fine.I have never felt better!! Throughout the BC experience,you will always find ignorant people,people with bizarre and uneducated ideas! When you know what your treatment program will be,just tell your boss,as simply as you can.The next few months are all about you,and not people who don't want to support you properly.Ths is your life!!There have been many discussions on this blog over the past few months about people's attitudes when they hear that you have Cancer.Like you, I was surrounded by people in the beginning,but I was scared witless!!! I found though,that as time went by,and I met my oncologist,then started treatment,that I started to feel much more in control,and not so frightened.I learnt that BC is very treatable,and most ladies go on to live long,healthy lives.The perception that most of us have about chemo is not entirely true.Today,for every side effect that chemo has,there is a medication to treat it,and so you will come to see,that it can be done,and you will be ok:):)The MOST important advice I can give you is DONT look ahead.Stay in the present,and if today is a lovely sunny day,just enjoy it for what it is.Take care of yourself,eat nutritious food,try and walk every day,or at least some form of exercise.The healthier you can be,the  better you will feel once treatment starts.Stay connected on here,and ask as many questions as you like.Before you know it,you will be counting down the days to the end of all this.There is an end,and life is VERY good again:):)Cheers Robyn.xox

  • rowdyrowdy Member Posts: 1,163
    edited April 2015

    Hi Kim reading your blog brings back how I was feeling 12 months ago. You have a long trip ahead of you.

    I had the 2 surgerys for margins as well. Unfortunatley for me they couldn't get it all and I had a mastectomy with imediate reconstruction. I'm slowly gettng back to normal, only 3 more herceptines to go.

    I was very lucky with my job as they were very supportive, but unfortunately there are some people out there who don't get it.

    The site is great if you need to vent ,I think we all have at sometime. Be kind t yourself andt ake it 1 day at a time that was the only way I got through it. Good luck qith your oncologist visit.

  • Cook65Cook65 Member Posts: 726
    edited April 2015

    Hi Kim,

    i was diagnosed in April 2014. I had a lumpectomy at the end of May, 5 months of TCH chemo with finished in October, 33 radiotherapy sessions which ended on 19th December and now only have 4 more herceptin to go. And clearly, I have gone through all of this because I'm an attention seeker! Sorry, I couldn't help myself with that one.

    It's a difficult process but doable. Fear of the unknown is awful and once you start treatment you will find that you will feel a little calmer.  For me chemo was the worst part, but tell your oncologist everything as you will be surprised what they can do to make things more bearable. Surround yourself with people who are supportive. Do you have a boss higher up that you could go to instead of the one who thinks it's in your head. 

    I too am the go to person and the strong one in my family.  It has been very difficult for my family to cope with and get their heads around. My husband is only really just coming to terms with it all now 11 months down the track.  I too have had times when I have felt very alone. I think most people in this situation feels the same at some point. 

    With regards to your boss, perhaps leave some of the cancer council booklets at the office for your colleagues to look at. There is one specifically for at work. But do be aware that there are people out there who think they know all about bc and really have no idea what so ever. You can't change them, all you can do is change with way you respond to them.    Be kind to yourself, remember it's ok to be scared and sad and angry. They are all pretty common emotions. You will get through this. Take care and good luck with your appointment. Love Karen xox

  • Kim22Kim22 Member Posts: 8
    edited April 2015
    Thanks so much for your kind words Robyn. I'll do my best to take on your "live in the day" advice. My son is taking his son to SeaWorld for the first time today & asked me to come - we are heading out soon & I'll concentrate on seeing life through an 11 month old's eyes for today xx
  • Kim22Kim22 Member Posts: 8
    edited April 2015
    Hi Rowdy - many thanks for your reply. I'm thinking this site and reaching out to you wonderful ladies is going to be a god-send xx Did you manage to work much during your treatment; I've read so many different points of view...
  • Kim22Kim22 Member Posts: 8
    edited April 2015
    Hi Karen - thanks for taking time to reply. No unfortunately she is the top boss & any literature left around would make it unbearable for my co-workers. I manage 6 office staff & have had to tell them what is going on & for their own sake, to not mention anything or ask me anything whilst the boss is around - it really is that bad. The almighty dollar isn't everything I know, though I am on my own and sole income. I've looked at my income protection insurance & that would cover some of my wages, but worried about how to go about dealing with that & at the end of the day, we all want to get past all the treatment and life after this will still have a need to get back to work? Sorry, I'm rambling; I usually have everything mapped out with precision timing lol and this seems like everything is so up in the air xx
  • rowdyrowdy Member Posts: 1,163
    edited April 2015
    Hi Kim yes I did work during chemo, I was very tired but I felt I needed to work as it was something else to think about. I work in the health industry and the people I work with were very supportive and still are. I still struggle to go to work some days as I visit sick people and it is difficult when you are the carer and you have been where they are. I do push myself as I hac=ve always liked my job and BC isn't going to take anything else from me. Life is to live and enjoy.
  • ElleCEElleCE Member Posts: 10
    edited April 2015
    Hi Kim
    I was diagnosed with HER2+ BC in August 2012 and I've come through the other side of treatment! I found it hard going but manageable. Things go quite fast once diagnosed! As an HR Manager I actually didn't feel emotionally able to work while I was going through the initial surgery stage of lumpectomy and node clearance followed by a mastectomy 2 weeks later. I started chemotherapy in October and had 8 sessions which took nearly 6 months. I was really knocked about by the chemo. I couldn't physically work during this time. As the main wage earner I was pleased to have income protection insurance but it was very outdated and about 1/2 what I was earning. We renegotiated our mortgage and leaned heavily on my parents financially. Very stressful time indeed. I had 25 sessions of radiotherapy in May 2013. By June, while continuing on Herceptin, I was negotiating a return to work plan. Work had been supportive and many people stayed supportive but I ended up in a dispute with the retiring CEO who insisted that if I wanted to return to my full time job part time, I had to report to the person also working part time who was filling in for my full time role. No, it doesn't make sense. It was absolutely dreadful. I urge you to join a union if you haven't already as, even if they're not a great union, it may provide you with access to legal support should you need it. As an HR Manager in a community services organisation (including supporting families of children with disabilities!) I had not seen a need to join a union. If you have prior opportunity to join, they'll usually only give you advice on a matter. So if you join now and things end up in dispute, you will hopefully have access to their representation. I wished I had not spent several months trying to negotiate with my workplace. Once they take a discriminatory approach, they've probably reframed things in their heads to justify it. I wished I hadn't spent precious energy on them. Fair Work can be of assistance as can whatever equivalent you have in your state to the Victorian Human Rights Commission.

    I wish you well and hope you can sort things out sufficiently to focus on your wellbeing and work your way through your treatment.

    All the best
    Lisa
  • Hazel MHazel M BrisbaneMember Posts: 708
    edited April 2015

    Hi Kim, everything seems to get turned upside down when you are diagnosed with BC, doesn't it? Robyn's advice to take one day at a time is the best advice anyone can give. Looking too far ahead just makes it all the more daunting. I was diagnosed in September 2013, had a lumpectomy, 18wks of chemo and 6 weeks of radiation. I found chemo difficult, but it still wasn't as bad as I had anticipated. I had income protection which was a godsend, a fair bit of paperwork was required but I managed it with help of my medical team and workplace. Hard to believe your boss is female! When you know your treatment plan, just tell her how it's going to be, then concentrate on getting through it and taking care of yourself. I am now feeling quite good and I am back at work doing well. I'm not the same as I was before, I don't believe you can stay the same after having BC, but I am a much stronger person now. I still have depression and anxiety but they are all under control. All the best for your treatment, you can do this, take care,

    Hazel xx

  • perkyperky Member Posts: 18
    edited April 2015

    Hi Kym, as per the other comments I too have had Lumpectomy then axillary clearance both surgery in October 2014 followed by Chemo and radiation dose 14 today half way, Have had some bad luck developed cording but instant treatment helped that pass,went toxic with 2nd type of chemo and so it was stopped and now have lymphedema  of right arm which is coming down with treatment.I am still off work and its 2 months longer than expected.Have borrowed money from Mum and Children and sister as I am also a loner and need to return as soon as treatments finished. I suggest you get a calendar with big box entries and write all appointment and name of Doctors then fill in  which dates bills are automatically removed from your bank account and start filling in forms now for income protection and sickness benefits as both are huge.Once you get a little foggy in the head these things get harder to do and you get asked these questions a hundred times not only from these organisations but also from other health professionals as you go from each doctor in each field and the physio,chemo nurses your own GP etc also a folder of some sort as you will never receive so many papers from people.I also have a "Cancer bag" for all the booklets given to me which have been great and the bag is so handy and easily spotted to read each book again as you go though the treatments.Have never been so popular and had so many appointments as when this started.You will find yourself very busy while off work especially I find with the radiation having to go to hospital  Monday-Friday most days it takes me 1.5 hours to hop into car travel to hospital 20 mins for radiation(must book in 15 min pre time) and travel home.One day a week it takes me  4 hrs your automatically booked in for Physiotherapy then radiation then Doctors review.Then I go of my own accord  to a Lymphedema  drainage therapist for 1 hour finally home and yes I am tired especially when I have to fit in shopping,I and the dog do eat.Even tired you have to be very proactive with exercises, skin care and healthy eating even though I never vomited a couple of times close you feel seedy if eating junk food went though stages when too tired to chew and had soups or soft food for days. I also find the information from the other girls on these sites very helpful none will be exactly as yours but soon you will be relating to many things said. yours Perky

  • Daina_BCNADaina_BCNA Administrator Posts: 883
    edited April 2015
    Hi Kim, I just wanted to jump in and say hi. It looks like you have already had a warm welcome from some the amazing women in the online network. I hope you find the support you are looking for. How did you go with your appt Tuesday? I hope it went well and you have been able to call on your family and friends for support. If you need a hand finding your way around - just shout. ~ Daina
  • Sharon LeighSharon Leigh WollongongMember Posts: 61
    edited April 2015

    Hi Kim, Wonderful comments from BCNA a members above. I was diagnosed with HER2+ in Sept 2012. Right breast mastectomy in Dec 2012. Chemo for 6 months in 2013 with Herceptin until July 2014. Reconstruction Dec, 2014 with nipple surgery to finish sometime in 2015. I have a blog about my experience especially when going through chemo and side effects and what worked best. I found my girl friends and church were best support with direct answers to prayer needs. I am now down to 6 monthly visits with my Oncologist. My husband was pretty hopeless at being any sort of help as I am the strong one in the family (with 2 teenagers). After my last visit to the Oncologist, my husband asked "How did it go with him?" My reply "Fine except my Oncologist has been a woman for the last 2 years.". Ugg. Gotta laugh. I found the blogs on this BCNA site EXTREMELY helpful, gutsy and thankfully very honest. Happy to have a chat (I can call you for free after 6pm). Just inbox me if you need some company. Keep looking up. Rgds. Sharon, Wollongong

  • Kim22Kim22 Member Posts: 8
    edited April 2015
    Hi Rowdy
    You are certainly an inspiration and strong lady. Its good to hear that you still managed to work and your life philosophy is a brilliant mantra :-)
  • Kim22Kim22 Member Posts: 8
    edited April 2015
    Hi Daina, hi and yes there are some beautiful warm ladies on here for sure! With the Easter hols, my apt is next Tuesday - so this week was a test/appointment free week (lol how funny when people say that's great that you can at least have a week to not think about it)...at this stage not much happens that I don't think about it :-( The appts can't come quick enough for me really; I think once I know a definite plan then I wont feel so in limbo maybe. Thanks so much foe your reply - hope all is going well with you xx
  • Kim22Kim22 Member Posts: 8
    edited April 2015
    Hi Lisa. You've certainly had a journey and a half, but the honesty on this site is one of the great things about it. Like you, I have found my income protection isn't as good as I was lead to believe (kicking myself now for not being across that more closely); my kids keep telling me not to stress too much about it & my inner self knows that fighting this bloody disease and getting through treatment is the priority; just such an opposite way for me to think after years & years of conditioning that work is always #1. I am due for long service leave in 4 months - how ironic that instead of planning a trip away, this at least may be my saving grace financially? Thanks so much for sharing your story and advice with me xx
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