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

    In cheerier news, the hospital Wi-fi had sufficient bandwidth for me to join our daft family quiz on zoom and I was able to improvise a costume for “evil bingo” night. Don’t ask. I won the fancy dress, not least because of the risk of a nurse walking in to find me like this. Didn’t happen, thank goodness. 

  • Hi ,

    I thought you might like some company as I couldn't sleep either.  Pleased to hear that your pain management plan appears to be working although not enough to visit the vending machines to check them out, for the chocolate I presume?  Like you I'm also pleased to see back with us again, I was getting a bit worried there.

    Now, should we focus on the real issue here, your chocolate rustling sister.  It appears that sending you off with minimal supplies of chocolate is becoming a bit of a trend and I for one think that this is a definite breach of your civil liberties.  First the infamous Toblerone incident and now seashells and Lindt in one offence.  Perhaps when 's wife is elected she can have this put on the statute books as abuse with significant penalties, fines to be Rolo's and smarties, graduating up to handmade chocolates for really serious offences.  Repeat offenders obviously have to pay out in multipacks.  Community service completed by baking you a set number of cakes of your choice.  Something where the penalty fits the crime.

    It's good to hear that you have both your daughter's home now.  I have a lot of sympathy with them as they are facing a horrible situation and have no idea how I would have coped at their age.  I suspect it would have been extremely poorly as I had very little understanding of myself at that age and that left me without much of a clue about others.  It is good that you can let others step in now whilst you relax and just enjoy the love that is there for you.

    I hope that the move to the hospice is possible and soon.  I'm certain that they will fully understand the importance of not just cake but chocolate as well.

    Whilst I was laid in bed a little while ago with my head whizzing and not able to settle it kept coming back to the fact that my wife managed to get hold of some yeast and I was stuck between planning what bread I was going to make first and the fact that we currently have lots of bread in and I cannot make any for a couple of days or it will all waste.  Isn't it strange the things that you fixate on when you can't sleep.  I almost managed to drop off when I was thinking about what I could draw during the day when all of a sudden bread popped back into my brain again and I was wide awake.  I gave up and came down for a cup of ginger tea and to see if anyone else was awake.

    love and hugs,

    Gragon xx

  • FormerMember
    FormerMember in reply to Gragon

    Another laugh out loud post. Thanks

    I wholeheartedly support your chocolate manifesto. Full chocolate ownership has been restored for now, I’m happy to report. 

    Oddly enough I get fixated on bread too. You can’t just knock up a loaf in 20 minutes but equally once you’ve bought a loaf then there’s no need to bake one. I think the baking or buying of bread speaks to our daily routine and it’s this that’s been shattered by the corona crisis. Or maybe I’m just a greedy guts  who likes toast and marmite a bit too much. 

    While on the subject of bread and its excess or otherwise, I did find myself in the unusual situation of having too many hot Cross buns the other week. I made a hot cross bun bread and butter pudding adding extra raisins and some more spices. It was delicious. I highly recommend you try it.

    Right. I hear the nurses stirring. Last chance for some shut eye. 

    xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Daloni

    I hope you got a bit of shut eye.  I’m pleased to hear the pain is getting more manageable.  I do hope you get home by mid week so you can see and be with your girls.  What your girls are going through really touch a raw nerve with me as two of mine are around the same age one being at uni. You just want to protect them and make everything better for them but know you can’t.  
    Anyway enough of that.  I hope you have a pain free, chocolate filled and some sleep day. 
    Btw I read your post about your life.  I am in awe! If I replied to that thread it would be so much shorter and less interesting! 
    Take care xx

  • FormerMember
    FormerMember in reply to FormerMember

    My Dear Friend Daloni,

     I am so sorry I have been out of touch for the past months, but I also was in the middle of moving and selling a house and felt like if I did not concentrate I would not get it done in time. I hope you can get your pain under control soon That is the worst thing, pain.  Is the plan still to try Radiotherapy?

    I am just in the middle of reading all the recent posts but I wanted to tell you that you are in my prayers. It is amazing how quickly life can change- and we never know. You are so loved by everyone in the group and you are a precious person.  Take care and I hope you have all the help you need to get the pain under control.

    I will write more later tomorrow, once I catch up on all the posts.

    Hugs to you and the girls,

    Millie

  • FormerMember
    FormerMember in reply to FormerMember

    But I’d love to hear your story . It’s not a competition, it’s getting to know each other. My given name is Daloni (I didn’t get the memo about using a made up name, or perhaps I didn’t read it). No one has ever heard it before so I always feel like I stand out. I think I’ve spent my life trying to live up to the unusual name. The posh term for that is nominative determinism. 

    Before you ask, Daloni is from the Welsh for “my little sweetheart” and it’s pronounced more like Melanie than like baloney. I inherited it from my godmother who came from Bangor and was an early pioneer of female mountain climbing. I don’t actually have any Welsh roots. I’m Southwest London through and through.

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Bless you Millie. That’s so kind if you. Yes life can change so quickly. 

    The plan was only for one fraction of radiotherapy so it’s all done and dusted. There is every reason to think that it will do its job once I am over this blip and will deliver a couple if months (my oncologist’s assessment) of good pain relief. 

    xxx

  • I'm the same Lass, I never gave much thought to vibrators but sex was a passion extinguished by zoladex and provera as well.

    At least we know after reading dalonis dubiously moraled posts she is not on these although she appears to be woofing down every other drug the NHS produces.

    I dont think our excellent health service is there to provide dodgy thoughts fueled by chocolate so there are questions to be answered!

    I am not asking daloni directly as I have become frightened of her. 

  • FormerMember
    FormerMember in reply to Norberry

    I’m one scary lady, Joy JoyJoy

    Sex is well in the past for me too. I had a surgical menopause. One day I was merrily tripping along, oestrogen flowing through my body. The next none. Nada. All gone. It was like being hit by a steam train 

  • I'm the same Lass, I never gave much thought to vibrators but sex was a passion extinguished by zoladex and provera as well.

    At least we know after reading dalonis dubiously moraled posts she is not on these although she appears to be woofing down every other drug the NHS produces.

    I dont think our excellent health service is there to provide dodgy thoughts fueled by chocolate so there are questions to be answered!

    I am not asking daloni directly as I have become frightened of her.