Bad news

FormerMember over 4 years ago

184 replies
52 subscribers
87926 views

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 over 4 years ago in reply to FormerMember

Happy birthday tvman! May the sun shine on you today in every way

xxx

wino over 4 years ago in reply to tvman

Happy Birthday Tvman have a great day xx

KTatHome over 4 years ago in reply to wino

A message from Daloni copied over from hazel54’s bad news thread. To make sure Daloni’s story is all together.

Hello there my incorrigible chums

Do I have news for you!

The most exciting is that I should be going home tomorrow!!! The docs changed the plan and we will switch to long lasting oxycodone tablets tonight and turn the syringe driver off. I’ll take a tablet at 8pm and 8am. Top up liquid oxycodone (or as the lovely night nurse calls it, my G&T) will be available as required.

If that all goes well and I don’t ping back into a pain hell hole they will let me go. The hospice nurses will take over the prescribing with the GP as clinical lead. Over the next two weeks we should see the pain change as the radiotherapy starts to work and they will move me on to patches as things ease up.

We are going to go slowly on reducing the steroids as we can’t risk going quick and triggering it all off again. I do find steroids tricky as I have extreme trouble sleeping when I take them. I’m getting less than 3 hours sleep a night right now and I’m finding it next to impossible to nap. I read a book, let my eyes go droopy, try to nod off and a noise like the family having a row in the next room starts up in my head and my body starts twitching. I can’t tell you how unpleasant it is.

Which segues nicely to my next piece of news. I have had a 90 minute nap this afternoon. Hurray! I woke only because the syringe driver bleeped to let me know it was running out. Boo!

That bleep is a noise anyone who’s had chemo will know. It’s a series of three rising notes which, wait for it, are the first three notes of the baby shark song. Now that’s something you can never unknow. I’m not sure I can forgive my best friend for pointing it out during a chemo visit when she accompanied me.

Happy days here. All I need now is a cup of tea.

xxx

Daloni

Take care KT

IamLyn over 4 years ago in reply to tvman

tvman

Just wanted to wish you a Happy Birthday

IamLyn

Pet1968 over 4 years ago in reply to KTatHome

, hi there!

I hate steroids, can't sleep, like you but the worse part is, when i had to come off, it's like falling in a deep hole, horrible just odd. I slept then for 36!!! hours and felt like shit then..i hope they do it very slow for you!!

Pet

FormerMember over 4 years ago in reply to Pet1968

Pet1968

Hi Pet,

uh-oh! Yes we are doing it slowly. I could do with 36 hours of sleep. I had between 2h 40 and 2h 52 on the last three nights.

FormerMember over 4 years ago in reply to FormerMember

Good morning!

Well, very nearly. I managed over four hours before waking in pain and thoroughly disoriented, pushing at random buttons trying to find lights and call the nurse and get my bed organised.

Night nurse Rose has sorted me out. Pain killers (she calls it my G&T as it’s a liquid oxycodone top up) followed by tea and ginger nuts and a chat. Did someone say angel?

The nasty breakthrough pain was only to be expected and it will pass; it has passed. I am feeling confident I’ll get home this afternoon. I am looking forward to seeing my girls, my sister and bil, of course. But I’m most excited about the total tail and body wag I’ll get from Noodle. Oh the joy there will be!

I hope your nights have passed peacefully, my dear friends

xxx

Pet1968 over 4 years ago in reply to FormerMember

, Oh Daloni, that would be nice if they let you go, and wow i can imagine how your doggy will get crazy, i love that!!!

Hope it comes true today!!!!

Pet

FormerMember over 4 years ago in reply to FormerMember

Fingers crossed,

I can just see the whole dog wag welcome you will get from Noodle.

FormerMember over 4 years ago in reply to FormerMember

We may need to rename the thread the night owls. Or the Steroid gang.

I am only managing a few minutes a night again having upped my Prednisolone steroid up to 15mg from 10mg, which I am assured is a tiny amount. But I have hives all over the palms of my hands and soles of my feet and last night the corners of my eyes too. So I am itchy and feel like I am on speed (I don't really know what that would be like). Together with that my ribs are sore and my arm feels like it has toothache. But I am not coughing as much so the pain is much easier and I have control of my bodily functions. So I am taking this as a big improvement. I cannot imagine having to have the drugs others are having to take to keep going and it is quite frightening. However it is also encouraging to see that others are managing it and it can work.

I will be thinking of you today and hoping all will go to plan.