What a Christmas

FormerMember
FormerMember
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My partner was having back / side pain for a few months (numerous visits to GP, blood tests, XRays etc) - very bad last Sunday - ambulance to A & E - various tests.

It seems he has lung cancer with secondaries in brain & spine.  Diagnosis given Christmas Eve.  Prognosis 2 months - 2 years.

Home now - waiting for lung nurse / Macmillan / GP to get in touch, but everything presumably slowed down until New Year.

Broncoscopy expected @ 2 January.

Am feeling overwhelmed.

  • Hi ..Welcome to the community. I'm so sorry to hear of your partner's diagnosis. Hope the broncoscopy goes well next week.

     also has lung cancer with brain mets, so I've tagged her into this post,  in case she can throw any light on things for you.

    Have they told u your partner  about a treatment plan yet?

    You might want to join the Family and friends group to get support for yourself. I see  you've already joined the Lung cancer group to be in touch with those in a similar situation to your partner.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Hi

    Thanks for the response - no treatment plan yet - just steroids to reduce swelling in brain & hopefully alleviate unsteadiness / strange posture.  I imagine they'll need biopsy results to know what they are dealing with & the best course of treatment.

    Good idea re family & friends group.  Will join that now.  Will also join spine once we know whether it's spinal cord or spine bones.  Thought of all sorts of questions after I'd spoken to consultant.

  • It's, as well when u c consultant, to take a notebook with u, to write questions n answers in.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Thanks - I will - & shall be doing some research before then on types / stages / treatments so I'm not flying blind on the day.

    Monday will be the start of things - GP to get something signed so they will speak to me on partner's behalf (he can't queue up at 8am to see GP if he's run out of Tramadol), when to expect Lung Nurse, Macmillan etc ......

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Bclab

    Sorry to hear about your partner's diagnosis. Sorry I am late to answer.

    I hope that the biopsy goes well today. You are right once they now this they can start putting a plan into place.

    Buttercup is right, I have primary lung cancer which just over a year later had spread to my brain. I was fortunate, it was operable but within weeks I started to recur, so I was given a week of full brain radiotherapy (too many for cyberknife). Since then I have had chemotherapy that can get through the blood/brain barrier and at the moment it's clear.

    Do not worry about the prognosis, it is a best guess and the grade etc may change this too. Mine's quite a high grade and rather aggressive. When I went for the full brain radiotherapy, whilst I never asked for the prognosis and they were talking about the long term side effects (6 months after), I definitely got the impression that they did not think I would still be about to suffer them. That was the second week of July 2019. I am, as you can see, still here Slight smile

    Next it will be immunotherapy and see what effect that has.

    Definitely ask about an assigned nurse, I call them your PA. Often we have so many more questions after the appointment and they are the best to either answer or point you to who to contact.

    Just take it one day at a time and whilst you can't block it out but try not to focus on the long term, focus on what you have right now. It is how I cope.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for the words of hope - broncosposy went OK, & multi-disciplinary meeting a few days later.  Just had an appointment through for 23rd Jan with doctor who did the procedure - I'm assuming he will give us the results (sily me thought we'd know a few days after the procedure).

    Saw GP last week, District nurse coming tomorrow & hospice nurse on Thursday - was hoping I'd have results before they came so I could ask all the questions on the diagnosis / treatment plan because even with a list I doubt I'll ask / think of all the questions during the appointment with the doctor.

    Will feel less alone once I've seen them, I think.

    Breathlessness is increasing so I'm trying to make him sit still & only climb the stairs if absolutely essential (not just to fetch forgotten glasses!).

  • Good luck for 23 Jan

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • How did 23Jan go ?

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Hi - yet more change - lung biopsy 23 Jan, so moved the original 23rd appointment to today.  This morning we were told that broncoscopy wasn't showing cancer cells & biopsy results not in - they rang histology who confirmed biopsy showed cancer cells.  Multi-disciplinary meeting this afternoon when case will be discussed & they will ring me tomorrow to tell me the outcome.  So gearing up for the results this morning turned out to be an anticlimax, & my typed out list of questions will have to wait till tomorrow.  On the plus side, we've met the consultant & the lung nurse (& have her contact details) & they're OK telling us results over the phone rather than trekking over to hospital for another appointment.  Thanks so much for keeping in touch - I've hardly turned computer on in days, so sorry for delay replying.

  • Good luck for tomorrow

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.