The gift that keeps giving 😞

I just received this blog post in my email

What Liz has to say is all so true and so devastating. 
I've been navigating loss of job & identity since before my BC diagnosis nearly 4 years ago, but bc continued to take. I developed lymphoedema very soon after surgery, going into my first sleeve at the 6 week mark. At the time I was working in a clinical nursing capacity. I continued in that job for around 6 months, during which time my very supportive workplace tried to find as much non clinical work for me as possible. In the end, as I was only working 2 days a week, but needed more days financially, I  decided to look for alternatives.

I was very lucky in the last 2 & 1/2 years to have found 2 non clinical nursing roles, that I've thoroughly enjoyed. Like Liz, if I'd been working in the cancer sphere, I don't think that I could have coped with that emotionally. 

Just shows how cancer doesnt discriminate. I'll be thinking of Liz, & wishing her all the best as she moves in to this next phase


  • iserbrown
    iserbrown Member Posts: 5,511
    @lrb_03 thanks for the link!  Your story here was also interesting to read

    Goodness no one is immune regardless of their occupation, experience et cetera

    I found a line within very interesting as I have had this discussion online with @primek and others "...given my own experience of chronic post-mastectomy pain..."

    It's a so and so that just keeps giving in many ways and yes post mastectomy pain syndrome is a shocker!

    Take care

  • Afraser
    Afraser Member Posts: 4,327
    I have learned through this website to
    be very grateful to my surgeon for my painless mastectomy and axillary clearance. No underarm scarring, no
    painkillers (one push on the button to show I could do it!) in hospital or at home. Full mobility within 2 days. Yes, I did have a seroma but it wasn't painful either (just a nuisance). Everyone is different, physiology, tumour, options, but nevertheless I was very fortunate.
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    @Afraser. Yes, I  am very grateful also to my breast surgeon and my plastic surgeon.
    I have never had any pain after a reasonable amount of time. So lucky.
    Any scarring has been flattened with needling.
    Even now, with mets, I have never had pain.
    Wouldn't it be good if everyone could say the same thing?

  • Zoffiel
    Zoffiel Member Posts: 3,372
    There are so many reasons we don't want this disease culminating, of course, with the fact it can kill us.

    The degree of loss can be catastrophic or it can be marginal. The problem is the threat never goes away and even the most dedicated self care can't protect us from the fickle finger of fate.

    Ms O'Riordan losing her job because she simply can't do it any more mirrors the experience of so many. No one is lucky in those circumstances but some can adapt their skills more readily than others. Those who rely on packing supermarket shelves or picking fruit or other menial, physical jobs find  themselves in a diabolical situation with no prospect other than poverty and charity and the cruel strictures of a welfare system not designed for their experience This really is a shit of a disease.
  • kmakm
    kmakm Member Posts: 7,974
    That survivorship can be so challenging to Maslow's hierarchy of needs is comprehensively under reported, under highlighted and under served, ie allied health provisions. Five a year? That's a fricking joke...

  • arpie
    arpie Member Posts: 7,445
    Yes, I read that post this morning and was so sorry for Liz to have to make that decision for her own mental health safety.

    She has been so incredibly honest in all her dealings with BC since first diagnosed - any one who hasn't followed her whole story on her blog - really should.

    Coming from a well educated Healthy Professional who happened to be a Breast Cancer Surgeon (who is highly believable) - it more than validates all our own perceptions of this fucking disease.
  • melclarity
    melclarity Member Posts: 3,502
    @lrb_03 thanks for sharing that...there was something very poignant that she said and something I have lived by and spoken constantly of since my 2nd diagnosis and that is...

    "But most importantly, I need to learn (again – sorry, Mum!) to help myself. To put myself first and not say “Yes” to giving three talks in three different cities in one week, knowing I’ll crash and burn for two weeks after. 

    Time to just ‘be’ for a while and see what takes my fancy. It’s actually quite exciting!"

    It's something I constantly have to remind myself to do because as women, mothers, daughters, sisters we just don't, it's not a natural's learned and something I had to put me first.

    I had to leave the School I was at due to my inability to combat physically my role any longer, to only find myself out of Special Ed in a mainstream school, leading Behaviour Management and upskilling 20 ES. This is in ways more demanding and I get to the end of each week and think phew I made it. Nobody knows how incredibly hard it is to work full time after a diagnosis and subsequent treatments, most of us dont have a choice. I suffer alot of pain and nothing avails it, the worst is from radiation in 2011 and chemo in 2015 irreversible side effects that they dont tell you about. We are told to be grateful...and of course we are absolutely...but it would be so nice to be acknowledged by the medical profession that in fact they have a long way to go with treatments and quality survivorship for everyone. 

    M x
  • lrb_03
    lrb_03 Member Posts: 1,267
    This is a post that recently came up on my Facebook feed.

    It demonstrates exactly your point, @Zoffiel, and again reminds me of how lucky I've been in my life, to receive the education that has given me those transferrable skills, to have had supportive workplaces, through treatment and since, and also to know the support available here, on this forum.
  • lrb_03
    lrb_03 Member Posts: 1,267
    Oh, @melclarity, you are so right. I, too, suffer from pain as a result of radiotherapy,  something I don't remember being mentioned, although it may have been. I work only 4 days/week now, and that's more than enough physically. Financially, I could probably do with the extra days pay, but then I'd end up with a lot of sick  leave to get to appointments.

    My medical oncologist does at least acknowledge some of my now chronic joint issues, and check how I'm managing at each appointment
  • Sister
    Sister Member Posts: 4,960
    edited March 2019
    Sometimes it seems that all I do is live to work - it takes so much out of me.  I had thought that I might work at this level for a few years until the kids finished school and then attempt to get back into a management role but I honestly can't see it happening.  I love my work but right now, all I want in the future is retirement (can't see that happening, either).

    One of the ongoing joys of bc @melclarity @lrb_03
  • lrb_03
    lrb_03 Member Posts: 1,267
    @Sister, I can't see ever being able to afford to retire, with the ongoing costs of side effects of treatment. It never seems to end
  • iserbrown
    iserbrown Member Posts: 5,511
    edited March 2019
    Our focus does change once we've been on this rollercoaster for awhile!
    We have retired recently and now find that is the best thing we have done in a long time! We are not retirement age however we felt it was time given the hurdles of BC! 
    It is time for us and our well being - it takes some time to adjust!  Hubby now finds himself with a medical file he never had, tests to be done as precautionary because of family history - the last of those tests today!  
    After that it is about us and keeping my BC at bay the best we can and keeping stress out of our everyday!  I am convinced that my very stressful work life contributed to my BC and it would take some talking to convince me otherwise!

    The collection of specialists along the way are looking after me medically, Breast surgeon, Medical Oncologist, Gynaecology Oncologist, Remedial Therapist, Physiotherapist, Breast care nurse, Neurosurgeon, Ophthalmologist and my blessed GP and we are looking after me emotionally!

    Another blood test tomorrow to make sure everything is on track!

    Time to reflect on where you have been and assess where you are going and how to achieve - sometimes you have to shut one door before another opens

    Take care and sending hugs to all 

  • kmakm
    kmakm Member Posts: 7,974
    @lrb_03 @Sister No hope of retirement here either. My husband had hopes of retiring at 65 but that's gone now, due to both my BC and my sister's. It will be a minimum of 70 for him. I will have to get a job as soon as I am able and as he retires I will have to keep working. We took on extra debt to renovate our home to accommodate the three extra people cancer gave us, and then my BC used all of our meagre, but important, reserves. Our mortgage is nowhere close to being paid off now.

    It's a collection of circumstances that contributes to my anxiety and depression. By the time my husband and I reach a point where we can 'relax', if we make it that far, the sands in the hourglass will be running out. It's challenging to look at a future that just contains endless work, old age and death. It's unlikely we'll ever be alone in our home together. Kids these days can't/don't leave home until their late 20s and then they boomerang anyway. When my niece is 28 my husband will be 80...

    I know there will more than likely be joy along the way. The prospect of grandchildren is fun. But gee, at 52, it's tough to look at that life stretching in front of me and realise most of the good times are behind me.

    My husband is incredible, an absolute saint. He works so hard. I feel so guilty for saddling him with a family riddled with trauma, cancer, genetic mutations, depression and now an AI bundle of decrepitude. For better and for worse eh?

    The end result is that I think I'm getting better at living in the moment, being more present. It is what it is and I have to try to make the best of it. I have to rest my hopes and efforts not so much on myself but on making a better life for the next generation. I'd dearly love to hope that medical science will remove this cancer scourge from their lives and dreams. Reckon there's some fundraising in my future!
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    Retirement????? What’s that????  ;)
  • Sister
    Sister Member Posts: 4,960
    It's that everyone else gets to do @Kiwi Angel.