Bad news

FormerMember
FormerMember
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Hi gang 
I talked to my today oncologist about the scan on Tuesday and it’s not good news.

The tumours in my lungs are growing and there’s a new growth in the liver.

They think the pain I’m in is caused by growth in the cancer around my kidney. It’s now pressing on a nerve and this (rather than the spine tumour which was last week’s theory) would also explain the numbness in the skin on my thigh.

The team has proposed radiotherapy to the kidney tumour with the aim of giving me some pain control. They (and I) think this is the top priority. 

Beyond that UCLH has no useful trials to offer so my oncologist is contacting Barts, Guys and the Marsden to see if they have anything.

Sorry to bring bad news but I know you like to know.

I’ve been in appalling pain for a few days now and the hospice nurses have been great. I’m now on stronger pain killers to try to bring the pain under control. I’m hoping the next 24 hours will see some change because frankly I can’t go on like this. 

It’s been frightening how quickly I’ve deteriorated. On Monday I was walking the dog. Ok I was struggling but I did it.  Today I’ve been in too much pain to stand long enough to cook dinner. I guess it takes only a small amount of growth to go from not pressing on a nerve to pressing on a nerve.

It feels like I’ve crossed a rubicon here. I’m no longer treatable but not curable. Now it’s the palliative phase. It’s a lot to take in. There have been tears here, from both me and my daughter 

 
Xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Morning  

    I'm so, so pleased to hear your Consultant is taking you with her to Guys hospital, and that it's also more manageable for you. Phew.

    But so sorry you're still in that amount of pain and hope you can get some relief very soon.

    Sending lots of love and gentle hugs.

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear All

    I had a phone call at 4pm yesterday afternoon asking could I come to Guys hospital in London for radiotherapy today at 9am? Why yes, I rather felt I could. At 6pm the registrar in radiology rang to run through my medical history (they didn’t have the notes from UCLH where I’ve been treated since 2016 but do have all my radiotherapy history). So we are all set. 

    They plan to do what would normally take two days in one go. The plan is I go in at 9am for a CT scan then wait while the radiologist makes the plan. I’m scheduled for radiotherapy around lunchtime. I should be through by 2pm. They can only give me one dose as I’ve had a lot of radiotherapy already but they hope this will relieve the pain, for a couple of months at least. 

    I’m amazed and hugely relieved. I can barely function right now. Wish me luck! 

    xxx

  • FormerMember
    FormerMember in reply to FormerMember

    - fantastic news.  Wishing you lots of luck and luv xxxx

    debs 

  • Hi

    Good news.  Will be thinking of you.  I thought I was the only one up and about at silly o'clock in the morning.

    Big day all round as I start my chemo today as well and to top it off the sun is shining.....

    xxxxx

    Carpe Diem
    Deb1E
  • FormerMember
    FormerMember in reply to FormerMember

    What can we say to that other than thinking of you and praying all goes well.

    I heard yesterday that the district nurse is coming today to do my injection. Not as big as having a massive dose of RT, just a little prick as they say, but hopefully it will ease my back and keep the liesions at bay. 

  • FormerMember
    FormerMember in reply to Deb1E

    Good luck ladies! Will be thinking you  and 

    Hope it all goes smoothly for you both and delivers the very best results.

    Good news about your 'little prick', too Flushed I hope it'll give you some relief.

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    That’s good news. Anything that helps us to be more comfortable matters. I hope she gets to you early in her rounds 

    xx

  • Hi

    You should be at Guys now, ready for your day ahead, I want to wish you the very best of luck for all they do for you.

    Tvman

    Love life and family.
  • FormerMember
    FormerMember in reply to FormerMember

    Hope all went well good luck take care Hibiscus

  • Hi

    So sorry I'm late welcoming you to the group and ask we all say, I'd rather have met you elsewhere. My reason, working too hard in the garden. When I get out of my chair, I start having pain straight away so digging, bending, using power tools etc ain't good for my spine so I spend a lot of time recovering. Haven't done anything since last night yet I can feel a twinge or two still.

    Good luck with your chemo today, I hope it doesn't cause you any problems. I've a rare blood cancer, MDS, and my treatment isn't through chemo. I inject myself weekly with a solution that encourages my bone marrow to produce more red blood cells. I've given myself well over 400 injections so far. 

    I'll be keeping in touch with you, I'm sure.

    Take care Deb

    Tvman x

    Love life and family.