Discharged

FormerMember
FormerMember
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Morning all.

I was diagnosed with a recurrence of breast cancer in Nov 2015 so in 2016, had surgery, radiotherapy and aggressive chemo. It was a gruelling year. I had a year of hormone therapy which kept things stable and then a shock diagnosis of bone & brain mets, so incurable. 2 years of constant chemo & progression to liver & lungs, & considered terminal. 4 hospital admissions 2 with severe pneumonia & 2 with spinal cord compression. Leptomeningeal cancer now the big one.On my 5th line of chemo but it doesn’t cross the blood/brain barrier. If it shrank the tumours in the bones of my spine it would help with the pain, but it hammers the blood.

So, the decision to stop cancer treatment was an easy one for me I’m getting precious time with family & friends & feeling well partly from high dose steroids.

Had a phone Oncology appt yesterday. I’ve got a brain scan on 17th. April, bloods & injection on 20th & that’s it.

I’ve been officually discharged from Oncology, gulp. The team I’ve been surrounded by for the last 3 years are no longer my team. (but have said I can go back at any time) So many hospital appts, scans, bloods, it’s like having another job. My new team are lovely so I feel very lucky and everyone is supportive of my decision, apparently very few people stop even when the treatment isn’t working.

There were tears. Shock, relief, reality check....
Our sons & OH’s are coming for dinner tonight & I’m so excited! Both of them have had a promotion at work so lots to celebrate.

I’m going to use M&S plant range & make a couple of side dishes to keep it simple. Our eldest will bring Jack now 7 months & watching Sula & Jack together is better than anything on TV.

Hope everyone had a good weekend, can’t wait for it to warm up a bit xx

  • You are so brave and I hope I can be like you. 


    I have an oncologist who I have been seeing for the last 10 years he arranges my scans and prescribes my ATRA a targeted drug and checks my bloods. We have telephone conversations every month. I had always thought somehow he would see me through to the end. But now realise that once I stop the ATRA he will pass me on to the palliative care doctor. Who i also have telephone conversations with about my pain medication. That will be hard as I have become emotionally dependant on having him to talk to that someone cares how I am feeling. But I realise now the palliative team will just take over. Bit of a shock but I will get used to it as I have everything else.

    lovely that you have your family to cheer you up. And Sula of course. I have a daughter nearby and a son in London. It will be good when we all meet up again properly xxx I also hope it warms up soon. It seems to have been cold for so long 

    Ruth 

  • You are so right with the oncology team they know you inside out and makes it more of best friends team I like to think off where having a connection and being who you are is so important have a great time with your dinner and enjoy everything you want to do loads of love and hugs xxxxxxxx

    Flippen
  • Hi Tinalay, Well, that's you taken control and although it sounds scary, I think it is great! No more appointments to take up your time, just family meals and get together to make memories! Enjoy every minute!! 
    yes it would be nice to have a bit of heat, it was -3 here last night and it got up to a high of 4 last night! Brrr!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Tinalay, I’m glad you’re finding your new team lovely, and that you seem hunkered down to enjoying the time you have left. I like others will try and aspire to that way of thinking when my time comes. 

    I hope you’ve had a lovely time together tonight.

    Take care KT

  • Tinalay 

    I am so in awe of you. You have been through so much and always seem so upbeat even in terrible times. You have been welcoming and encouraging to many of us on here and I want to say Thank You.

    I wish you and all your family the very best in this new time.

    Lots of love.

    Patmart

  • Hi Tinalay,

    I'm so pleased for you that you are able to make choices that are right for you with a supportive team around you. 

    I hope that you had a lovely dinner with your family. Jack and Sula sound like a lovely entertaining time.

    Best wishes 

    Sarah