Forum Discussion

maggie001's avatar
maggie001
Member
9 years ago

To work or not to work?

i am hoping you lovely ladies could share your thoughts on the dilemma of to work or not to work following a mbc diagnosis? I was Dx Stage IV at the end of September this year. The Se of Afinitor/exemestane/Xgeva were awful and I have basically been on sick leave for the past three weeks bar a few days. I stopped Afinitor and am hoping to switch to Letrozole.  I am now wondering whether I will ever be fully OK to return to work full time or indeed if I want to? Are the side effects of most treatment plans difficult to juggle with work? I'm not sure I want to work part time....I think I would feel that I was not truly productive.  I am a personnel manager.  I am fortunate to have insurance with my superannuation which I think would financially allow me to stop work, but if I do, will I find myself bored and too focussed on this disease? Then again, if my life span is limited, do I want to waste the time left to me working? Perhaps you have faced similar questions and perhaps you have been on the mbc journey longer than me? Is so, I would love to hear from you, thank you, cheers Judy 
work
  • Anne94's avatar
    Anne94
    Member
    9 years ago
    Hi maggie001, I was diagnosed with metastic breast cancer this September. It's a huge shock to get your head around. So,  I took nearly 5 weeks off from work, just to get my head in a good place.  I've been back at work for a coupIe weeks now. And I only work part - time. But my boss is amazing & very supportive. So,  while I'm well, I will continue to work.  I have changed my work habits though- I didnt do any heavy lifting this weekend,  there are wardsmen who can do that.  And I've blocked out the 2 days in the roster for Drs appts & the zoladex injection (that makes me feel like I have the flu post injection).
    I was initially put on exemestane but I still had a menstrual cycle, so changed to tamoxifen.  Have been on that for about 3 weeks. The hot flushes have been bad since then and had a couple of days being really irritable.
    And I've taken up swimming because I'm not allowed to run/jump, so no gym classes anymore. 
    Anyway, I'm still new at this. 
    Kind regards
    Anne
  • maggie001's avatar
    maggie001
    Member
    9 years ago
    Thanks so much everyone for your thoughts on this dilemma.  Scooper we are very much the same - I am 56 also and planned to retire at 60. This diagnosis threw everything on its head. My employer has been very supportive . I spoke with my boss today and  they  have arranged for someone to cover my position if I feel unwell and can't come in one day or if I have to leave early due to fatigue. They will welcome me back but also don't want me to feel pressured to be there if I'm not feeling well.  I am aiming to be back at work on Monday after almost 3 weeks sick leave. I saw the oncologist today and will remain just on Exemestane and Xgeva going forward. I also take Caltrate, vitamin B12 and a multi vitamin.  I feel happy about this as I feel I'm tolerating both the drugs well. My Oncologist said if they had something better than Afinitor then they would not prescribe Afinitor. She apologised for putting me through the torrid Afinitor journey.  It works for some but clearly not for me. After 3 weeks I am only now feeling better from its awful side effects.  Let's hope the Exemestane can do its thing. 
    So I hope that I can settle back into some routine at work and find a focus other than just this awful disease. 
    Thanks so much everyone for giving me hope and for inspiring me.  I am getting my head around where I'm at and realising that not everything has to change .  I can do this! 
    Wishing everyone good days with good friends , cheers Judy 
  • Cate64's avatar
    Cate64
    Member
    9 years ago
    @Share, Sheryl it is amazing isn't it?? How we are all so differently affected by our treatments for relatively the same thing. I was for a while very worried that treatment was doing nothing because I wasn't suffering the side effects I felt I should be.

     I only started taking Calrate when I started Chemo in December. I have been having Xgeva injections monthly since April.

    I wonder if my running does help?? I would like to think it helps me in my fight, it certainly helps my state of mind.

    I dont understand how I feel so good but in reality I am so very ill!!!

  • Share's avatar
    Share
    Member
    9 years ago

    Hi @Cate64, it is amazing that through the "same" or "similar" treatment, that our bodies all do their own crazy stuff. I have been taking calcium/vitamin D tablets for several years now - early bc diagnosis in 2003.

    Within 3 months of having the xgeva injections, my calcium levels plummeted. So much so that whilst I was in hospital I was prescribed 6 of those huge pills per day. As my levels improved, they were reduced to 4 daily, and now I take 2 per day. All under the supervision of my oncologist.  

    Possibly your calcium levels are good - not simply because of the supplements - but more your active lifestyle !

    More power to you for it.

    Regards, Sheryl

  • Scooper's avatar
    Scooper
    Member
    9 years ago
    Hello Judy
    I was diagnosed with MBC after emergency surgery to my C3/C4 in August 2015. I then had a lumpectomy with nodes removed and then radiation to my cervical spine.  At the time my oncologist gave me of until the end of March 2016.  I thought wow - that is a long time.  I was then diagnosed with a melanoma in January and that was relatively easy to remove compared to what I had been through.  It is now the start of November 2016 and I am still on sick leave.  My oncology team have no problems giving me leave.  I had accumulated over 300 plus days of paid sick leave which will run out in February/March 2017. I had worked for over 35 years full time in a government position.  I am then fortunate enough to have an insurance plan attached to my superannuation which will pay be a temporary pension for at least 12 months.  I then have over 180 long service leave days left if I want to use them. As I am 56 I was intending to retire at 60.  This disease has certainly turned my world upside down.  I try and keep busy all week which is pretty hard now that I am feeling reasonably well.  I go to the pool, do lunch, go shopping, walk my puppy dog  or go the movies.  I am able to go and do some part time work when I run out of sick leave.  I am so looking forward to this.  I have too much time to think about me, me, me.  I have applied for a couple of volunteering jobs but to no avail.
    I say take a little time out from work.  I am on letrozole and xvega - the side effects of letrozole are pretty average. 
    Working part time is a great option.  Please do not think you would not be productive.  I think it is a perception if you are now working you are "lazy".  I know people think that about me because I look well on the outside. 
    It's just crappy full stop Judy but please have some time to yourself to come to terms with everything that is happening to you. 
    Kind Regards and Love to All
    Sandra
    xxxxx
  • Afraser's avatar
    Afraser
    Member
    9 years ago

    As everyone says, there is no right or wrong, it's what works best for you. Like Cate, I worked through treatment, found it really beneficial but then again I was able to do so (no nausea, no fatigue). I did have other side effects but they did not stop me working. Staff and Director were all very supportive.

    I cut back one day after about a year, not because of cancer treatment but because cancer forced me to accept I wasn't getting any younger (I was 68) and my work/life balance was terrible. I do a busy 4 day week, find that works really well for me, and have more time for other pursuits ( have finally joined a local choir, and the gym). Good luck with whatever you decide.

  • wendy_h67's avatar
    wendy_h67
    Member
    9 years ago
    Hi Judy, I have not worked for 15 years after my first diagnosis of early breast cancer . At that time my employer gave me 12 months leave to recover and make up my mind if I wanted to return to work. I was working as a trained nurse and the job was stressful so I enjoyed my leave and didnt return. Soon after my grand children were born and I enjoyed being there looking after them whenever I could. Now I have metastatic B C which I have been living with for over 4 years . My husband is rretired and we make the most of every day. Visiting friends going out for lunch or just out for coffee. We live on the coast so walks along the beach are my favourite. I love craft work and keep productive.I know everyones interest is different  but for me it is good to take time out for yourself. As they say stop and smell the flowers as long as you don't get hayfever. Love Wendy 
  • Cate64's avatar
    Cate64
    Member
    9 years ago
    Hi Judy,

    I received my 'upgrade' in November 2015. I had 6 cycles of AC Chemo, worked full time right thru, Chemo in the morning work in the arvo. I was however, very lucky to tolerate it so well, I know other dont.

    I am now on daily arimidex & monthly Xgeva injections, my calcium levels are good on this possibly because I take Calcium/Vitamin D tablets on the Oncologists advise every day. My ovaries were removed in June but up until then I was also on monthly injections/implants of Xoladex to chemically shut them down.

    I remain active, I was & remain a runner, this I also kept up thru Chemo.I am currently training for City2Sea on 20/11. I couple this with healthy, organic where I can, eating.

    I still work full time, my employer has been wonderful & extremely supportive & remains to be so. I work for my own sanity, it occupies my mind so Im not sat at home with little else to think about but my diagnosis. It works for me but we are each different.

    Every one of us is different & tolerate treatments differently, you have to go with what you find works for you. I do have the odd Sunday whereby all I do is lay around watching television & napping.

    There is no right or wrong, you have to do what works for you, sometimes it just takes a while to work out what works.

    Cate
  • Share's avatar
    Share
    Member
    9 years ago

    Hi there @maggie001, I too have been faced with this dilemma and it still rears it's ugly head every now and then. Your regime sounds similar to mine Everolimus (Afinitor)/Aromasin (exemestane)/XGeva. You stated that you received your diagnosis at the end of September - so, barely 5 weeks ago.

    With the taking of any medications, it sometimes takes a while for our system to adjust. However, you have had a huge shock with your diagnosis combined with the juggling of taking not 1 but 3 new medications. I am not surprised at all that you have felt so awful.

    When I was diagnosed with mbc in September last year, I commenced aromasin first. Under instructions from my oncologist, I took 1 or 2 cycles of this before starting the injection of Xgeva and then 2 months later the everolimus (Afinitor). This was 2 fold - in the case of any reaction, it narrows down the cocktail of meds that it might be that has caused the reaction plus to reduce the onslaught on your body physically. Each of these 3 meds, taken alone, are quite powerful and have a whole range of potential side effects (as the enclosed leaflet states !) 

    I have been pretty fortunate in that I have not had a great deal of nausea however as I started radiotherapy around the same time it is difficult to state whether some of the nausea I had was due to the radiotherapy (along with many other issues) or new meds.

    After finishing radiotherapy in February, I had a 3 week stay in hospital. Lung infection (thought the cancer may have spread) and I was anaemic (7 x blood transfusions). I was away from work for around 8 weeks.

    One year from diagnosis, I take Afinitor/exemestane on a daily basis and Xgeva injections once every 3 months now due to a huge drop in calcium levels after only 3 x monthly injections.

    I have had the most wonderful support from my employer. We are a financial planning firm who understand when people are ill with a chronic disease or a diagnosis of terminal illness. We many long term clients who we have assisted with their claims.

    Generally I work 4 or 5 days per week because it keeps me grounded and sane. I do not want this disease to define me and whilst I am lucky enough to be well enough to work, it keeps my mind active and not so focussed on this beast, cancer.

    Don't ever think that being part time you won't "be productive". As you are a personnel manager, I am certain you have all the qualities of somebody who is an asset to your employer.

    Judy, my story is not dis-similar to yours but being 12 months along, I have worked out a balance. It has taken a while. There are some days where I have only been able to work 2 or 3 days per week. 

    I hope you find the right balance for you.

    Very best wishes and light to you, Judy.

    Kind regards

    Sheryl