Confused about life expectancy

Hi

my partner has tumours in eight vertebrae in the spine. Last week she had speech issues because the tumours at C2 we’re pressing on the spinal column. They increased her Dexamethasone to 12mg and it’s removed the intense headaches (she also takes 500mg of morphine a day and a few other pain killers) and her speech has returned to normal. Have you got a specialmist care nurse and/or Hospice involved? We’ve found having the Hospice doctor phoning or visiting weekly has made a huge difference. firstly, Debbie is at risk of what’s called a hangman’s fracture (I probably don’t need to spell it out but it would mean almost instant death). The steroids have delayed this. However, aside from the medication extending her life and improvilong the quality of it, it has really helped me to cope. I feel that there are options, things I can do. I feel proactive and I understand her medication .  

As always make every day count. If he’s well enough get out and about doing things he enjoys   My partner loves a coffee shop. Making new memories is good. Is Ask questions too. If there is no hope and he only has weeks then why offer chemo? It doesn’t make sense. 

You arent alone with the secret crying and next time you’re sitting on the loo using toilet tissue to mop tears, remember there’s a woman here doing the same. Then, just like uou, I go and make a cuppa and offer a snack. 

Keep going, you can do this. 

Thank you for that I know it sound selfish and I don't mean it to be but when feeling really down its like you're the only person in the world. Hubby won't let me get Macmillan in as he doesn't think it's that bad, yet he wants to discuss his will etc. Is now worried cause they don't want blood tests done for Tuesday which is out of the routine. I know you say ask questions but he won't and gets upset if I do - oops I'm moaning again sorry. Going to have a right discussion with him tomorrow about questions to ask whether he likes it or not as I reckon we need some answers and clearances - thanks for you help really appreciate it from someone who understands - hope all is well with you x

Hi JazzR

it doesn’t sound selfish to me. We dion’t have cancer but we’re living with it and have our own worries and challenges. It’s a shame about not getting macmillan norse or other specialist  nurse  involved  maybe you could ask him when he thinks that’s relevant or try to persuade him it would help you with advice  (which it certainly would), we’ve had that support for over five  years so maybe use us as an example  they aren’t just for the end of life days, they are able to manage symptoms along the way  I hope you can persuad him.   

I used to discuss the questions I wanted answering before appointments, and as my partner didn’t want me to ask them, I’d ask her to do so. More recently I’ve taken to asking them as she can’t think straight but has reached a point of knowing that I’m just looking after her interests. I often have lists of points to share or questions written down. If you did  this he could veto them, maybe. I use a notebook and make notes of information shared. It also comes in handy if I encounter any jobsworth types as it makes them nervous. The good medical professionals are never bothered by my taking of any notes. 

If he’s discussing his will maybe you could talk about a Medical power of attorney. Even if you decide not to take one out, (we did) it could manoeuvre the discussion towards your wish to be actively respecting his wishes and ensuring he gets the best possible care. 

it such a painful time and all of these challenges make it a little tougher. Good luck with it all. As for me, I wish my stupid brain would turn off. I’m putting the phone down AGAIN and hopefully I’ll sleep, THIS time. :-)

Hi

Jane,

I'm so very sorry for your loss. I don't know what your personality is like but maybe now you don't have to pretend to be strong anymore? My thoughts are with you.....

Richard, x

So sorry to hear that Jane. My thoughts are with you.

Ian

Thank you so much for that. I hope your treatment works for you .

Thank you Ian , hope all your treatment is going well 

Jane x

Folks,

I'm so sorry to hear about your trials.  Doctors are not prophets.  Nobody knows when the call will come.  I'm a retired GP and gave up fairly quickly looking to prophesy the future as I was always wrong.   Live each day at a time and ignore prophecies.

My prayers go out to you all.

Regards

Charles

Hi JazzR. I am a 66 year old bloke who has lived with PC now for over 3 years. All the best in your struggle.