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

  • Well You certainly don't do things by half! I was pleased when I got to your most recent post from tea time that things had settled and you didn't have to take any liquid Oxycondone for breakthrough pain! That in itself is a huge step! I do hope they transfer you to the hospice where the food will be a lot better. I couldn't believe the difference in the meals, when I was in my local hospice for 10 days, it felt more like a hotel! Which is closest from your house, hospice or hospital? That was really a nice thing to do the people who are not now buying your house did! Yes the world is full of thoughtful people! Really pleased your two daughters will be able to support you and one another after tomorrow! Hope you manage a good night's sleep, even with the steroids! 

    your wife sounds like a very intelligent lady!! Glad you got your injection and all went smoothly! ANY FRIEND of Daloni is very welcome here! I hope you are doing alright!

    I hope everyone has a quiet, peaceful, safe weekend. Especially you Daloni! Take Care my friend!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to anndanv

    Hi Annette 

    the hospice is just round the corner from the hospital. Their grounds, on the wooded outskirts in the green belt of Tunbridge Wells, all but abut. 

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    Thank you for sharing your radiotherapy flare up story. It sounds like you had a nasty time of it. I’m going to hang on to the hope that’s this is what I’m going through and that the anecdotal accounts that it indicates the RT is working are correct. I’ve now got reason to feel optimistic. Always the best place. 

    Did I mention that my oncologist at the trials unit said that theoretically the trial drug I was on until three weeks ago should make the cancer more susceptible to radiotherapy? Indeed the next phase of the trial will look at adding the drug to radiotherapy. I think the people in charge may be interested in what’s happened to me! 

    As you can see, I’ve got steroid induced insomnia. It will pass. 

    xx

  • Good morning night owl Daloni, That's good the hospice and hospital are quite close by. Our Marie Curie Hospice used to be a bit further away but about nine years ago when they tried to extend it, they couldn't get the land, so they built a brand new one on the grounds of the hospital, next to a park and it's three times the size of the original hospice.

    I was pleased to read it is the steroids that are keeping you awake and not pain! You will probably get to sleep about 15 minutes before they waken you for breakfast! Lol! That's the usual for me, I'm just dozing off when my husband is thinking about getting up for breakfast! Then he brings me up some tea! He is a gem and never complains!

    Try to get some sleep you need all the rest you can get!! Night night!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Morning  

    I'm trying to catch up after a week of home schooling three children with various different attitudes and expectations (frankly impossible) so please forgive me being late to the party. 

    What a week you've had. Sorry the food isn't great in hospital, always feels a bit cruel given it's the highlight of the hospital day! I'm assuming you can't have visitors either, that must be tough too. Glad to hear they've bumped you up to the mega drug trolley though, hope it's all working beautifully now. 

    Oh and I just read an article about drone supplies, maybe we could start a steady supply of chocolate and flowers to simply land on you to meet all additional needs. I'm also  thinking Norbury's wife should be elected to parliament... 

    Xx

  • FormerMember
    FormerMember in reply to Gobaith

    Now there’s an idea, ! I love the idea of my girls in the woods guiding a flower and chocolate laden drone to my window! You’re right - no visitors but thd security guards will drop off a bag to the wards so I do now have chocolate and clean pants. Among other things. 

    I will vote for Joy’s wife Joy

  • Glad to see you seem a bit more chipper today daloni. 

    Thought I'd give you a chuckle....

    Reading this thread in my emails on my phone, which means the type set is tiny. My eyes are also having issues focusing, and everything is a bit blurred. In reading Gobaith's post, I did a wtf double take that had me opening the post in a Web page to read properly.

    You see, I didn't read 'visitors' the first or second time, I read 'vibrators'!

    *Headdesk*

    Lass

    Xx

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • Oh yes, clean pants are very important although what would I sacrifice if the drone could only carry so much? Hmmm... 

    (Hospital paper pants Grimacing

  • I'm now crying with laughter. 

    I had a recent physio session where I was informed that vibrators can now be bought in vending machines on service stations on the M5. Apparently colours can be chosen to match one's hockey team! 

    maybe check out the hospital vending machine. 

    As gynae cancer patients, there are no boundaries here! Apologies everyone else. 

  • Oh Lass, that has made my day, all Daloni’s needs met there. I laughed out loud and the dog looked so surprised! I do the same myself with the small print but that was the best over!

    Daloni, pleased to see you are so much brighter today. Hope you get your get out of jail free pass soon and the food is better today.

    Very chuffed myself last night I finally got a delivery slot for groceries. I tried Asda again with no luck and decided to give Tesco a go. Got a slot straight away, delivering tomorrow. To say I was pleased was an understatement, I really don’t like having to ask other people to do it for me, now I feel independent again!

    love  and hugs

    Maggie xx