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Not sure what to think. Wife has Metastatic bone cancer

DanNAnne
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My lovely gorgeous wife, who I married in September, was diagnosed with breast cancer (2 types in her right breast) a month after we got married. She had breast cancer and reconstruction in her left breast 11 years ago (long before I knew her). She had a full mastectomy and reconstruction in December plus lymph node removal as a precaution. No radiation or Chemotherapy required (both were required with her left breast). We were over the moon as was the breast care team.

But then things started to go wrong. 

Anne just was not well. Very tired. Temperatures and violent shivers. The worst coughing fits I've ever heard (probably caused by a rescue cat that we took on; although who ultimately prompted the full diagnosis). 

Anne had various x-rays, CT scans, MRIs, full body scans. As a result she was diagnosed with metastatic bone cancer. Even more alarmingly this has seemed to spread very quickly. Firstly we were told it was in her spine, then her ribs, her pelvis and her femurs. On Monday a doctor told us it was "everywhere". The breast care team and oncology have been very proactive; Orthopedics have been frustratingly (I would suggest bordering on negligently) slow as it doesn't seem they're bothered about the cancer. It's been suggested she might need hip replacements, and even femur strengthening or replacement.

I had to call an ambulance for Anne on Monday as she has a high temperature and was delirious. The paramedics measured her temperature at 39.5 degrees. She was admitted immediately.

It transpires Anne now has sepsis and they're trying to control her temperature and use antibiotics to fight the infection (apparently a rare Group B streptococcal infection).

We're very close and talk just about everything. However, I'm trying to stay strong for her, but find when by myself I am a quivering wreck. I'm so scared that I might loose Anne. If she survives for a number of years it's going to have a massive impact on our lives (which doesn't particularly worry me), but I find I simply can't switch from caring for Anne to trying to earn money. I'm self-employed as a business development manager (sales), but simply can not switch mind sets. Money is tight to say the least.

To further compound things, we live in an old canal workers cottage with very steep and narrow stairs; its just simply not going to work going forward.

I guess I'm writing this mainly to offload. But any constructive ideas would be much appreciated.

Dan

  • Welcome to Cancer Chat, Dan, though I’m sorry for the reason that has brought you here.

    Your message says so much about the love you have for Anne, the heartbreak and fear you’re carrying at the moment. You’ve both already faced a great deal, and to have the joy of your marriage followed so soon by such difficult news makes it completely understandable that you’re feeling overwhelmed, frightened, and torn in so many directions.

    You’re not alone in finding it difficult to switch between caring for someone you love and trying to manage work. Many people here will understand what you’re going through, especially when self-employment means there’s no real pause button. I hope others will join the conversation soon and offer their support as well.

    On a practical note, have you had the chance to speak with a hospital social worker? They might be able to assist with grants, equipment, or even looking into more suitable housing arrangements. The stairs you’ve mentioned do sound like a real concern, and it’s important you get the help needed to manage this going forward.

    If it all ever feels like too much, please remember our nurses are here to speak with you Monday to Friday, 9 am–5 pm, on 0808 800 4040.

    Please don’t hesitate to post again whenever you need to, we’re here to listen.

    With warmest wishes to both you and Anne,
    Renata, Cancer Chat Moderator

  • Offline

    Hi Dan,  I am so sorry to hear about your lovely wife Anne.  Cancer is such a horrible disease.  Like your wife I had breast cancer 13 years ago with operation, chemo, radiotherapy and tamoxifen etc.  Last year I had hip and back ache.  It transpires that I have metastatic breast cancer with extensive bone mets.  It was first in pelvis, then spine, then ribs and then skull it just is horrible.  My husband is self employed and he works from home.  I had to take ill health retirement from work as I get tired and can't sit for long periods.  I am on Ribociclib, Exemastane and Denosumab injections.  This is my seventh month on the medication.  It seems to have made the cancer stable so there is hope.  I am having radiotherapy next week as cancer is pushing into spinal cord.  I lead a pretty normal life and walk every day.  Have you looked at claiming any benefits, I worked for DWP for 21 years so know about benefits if you need any advice.  I am glad that you are able to offload on this safe place, my husband doesn't talk about it very much and I do worry about him.  Anyway I wish you and Anne lots of luck and hopefully she is home soon.  You are not alone.

    Lee x

  • Offline in reply to Moderator Renata

    Hello Renata
    Thank you for taking the type to comment.

    I will follow up on your suggestions. 

    Dan

  • Offline in reply to leelaloo

    Hello Lee

    Thank you sharing your experience. I hope the treatment helps you.

    Anne is in so much pain that at the moment normal activities like walking aren't possible.

    Macmillian have been brilliant in helping us to talk to the right people about benefits, etc. 

    Anne has been awarded higher rate "daily living" PIP but nothing for mobility which we found a bit strange seeing as she can't walk without crutches and a very limited distance; we have appealed.

    I am feeling a bit more positive since I first posted.

    Dan

  • Offline in reply to DanNAnne

    Hi Dan,  that is very strange about PIP.  You definitely need to appeal because she isn't able to walk like you said.  Sometimes it all about how you fill the form in.  I am so glad that you are feeling a bit more positive.

    Lee x

  • Offline in reply to leelaloo

    Thank you Lee
    Yes appeal in process.

    Dan

  • Offline in reply to DanNAnne

    Hi Dan

    I am sorry to hear about Anne and Im glad you are finding here supportive

    Re the pip glad you have appealed 

    Macmillan helped my hubby ( oesophageal cancer and secondary in spine).  He was awarded full pip mobility etc due to prognosis being less than 12 months  which also helped to unlock his private pension too ....

    Not sure what Annes dr have said to you at the moment ... But something to bear in mind.

    You are not alone

  • Offline in reply to Rhubarbdragon

    Hi the form is called a SR1 and it does entitle you to higher rate care on PIP not necessarily higher rate care of mobility  Not sure why that is.  but if you look on www.gov.uk it explains it.  Take care.

    Lee x.  

  • Offline in reply to leelaloo

    Hi Lee 

    Not really relevant to us but may be useful to others 

    Thanks for taking time to reply though

    Rb

  • Offline

    Thank you all for responding and for your support.

    Things have developed since my first post.

    Anne had an emergency operation to remove the new breast implant last Friday. When they operated they found a lot of infection which ultimately proved the right decision was taken.

    However, this has hit Anne hard. She now has one reconstructed breast and on the other side nothing at all. 

    It has been agreed that she needs a hip replacement and the femur on the same side strengthening. However the surgeons won't consider doing this until her blood markers are clear for 2 weeks. Then they say it would take 2 weeks to plan the operation in.

    Anne is currently stuck in a hospital bed (the ward staff are treating her like a VIP) and this could be the case until the operation a minimum of 4 weeks ahead.

    We would love to both be at home until the operation, but we live in an old canal workers cottage with very steep and narrow stairs with the only bathroom upstairs. It simply isn't safe for Anne.

    We have an appointment with Occupational Therapy on Monday, however I'm very aware they can't change the stairs in our house.

    Anne's mood is becoming increasingly low, although she always puts on a big smile to anyone who engages. The reality is she is in inner turmoil and I don't know what to do. I spent 6 hours with Anne today at hospital, much of the time we were bickering at each other. She said I was being negative about everything. So I try just to listen rather than say anything that could impact her low mood, but then she says I'm being uncaring and don't understand.

    To be blunt, this a shot place to be.

    Dan

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