Diagnosis - completely out of left field - lost

Hi bubbles75

I don’t often post on this group now, unfortunately I’m now in the bereaved spouses group but my heart went out to you when I read your post.

My husband also had kidney cancer which was incurable at diagnosis- it had spread to the adrenal gland &  both lungs when they found it- he was 49 & just made it to 50. Like your partner, there was little warning -he had lower backache & had had 2 MRIs previously which showed wear & tear of the spine (he had a physical job) & it certainly didn’t show up on the scans. So no one suspected anything different until the pain moved into his side.  
I am so sorry this has happened to you both. It is such a shock & I know you’ve had no time to adjust to it. have they given you a palliative nurse to contact? They can give you morphine that is slow release, taken every 12 hours as well as other meds for break through pain, it would definitely be worth talking through with them. You will still be processing it  all with the speed of it but what ever happens now, you will really help just by being there & talking to him- hasn’t got to be anything deep, but you will give him confidence by chatting as you have always done about anything & everything. This time is important & if he isn’t able to have treatment (I hope though with all my heart that he can) you will one day find comfort in knowing you helped him through a very difficult time. 
Much love & courage to you both 

Sarah xx

Thank you so much for your reply Sarah.  I am so sorry for your loss.

His consultant has put him on tivozanib and he is currently on day 9 of his first treatment.   He was originally given liquid morphine which seemed to work, then moved to 12 hour release and said it didn't touch it. But he is impatient at the best of times!

Unfortunately he is now back in hospital at the moment as the pain was unbearable and he had some numbness in his leg so they took him in for an MRI and he has now been told he has cancer infiltration into his back and leg muscles.  It is so hard at the current time not being able to be at the hospital with him.  They also want to do another x-ray as they think he has fluid on the lungs so may need to do a drain.  Hoping he will be allowed out on Tuesday pending no further issues being found.

Our GP has put us in contact with a palliative care nurse local to us.  But as stubborn as my partner is he wont ask for a time prognosis from his consultant so I really have no idea.  It is just weeks since diagnosis and so far we have only had bad news/further issues though trying to stay positive. it seems to be moving downhill rapidly.   With this new news I just don't know what to think or expect. It is hard for me as I am trying to be strong and 'normal' for him, and though I have a good support network of family (not local to me) and friends in the current time not being able to visit them is really hard.

I suppose no matter what I just want him back home with me for now.

Thank you so much for your kind words.

My heart goes out to you too.

xxx

I’m sorry things don’t seem to be going in the right direction just now for you. It was the same for us- no let up.  Lets hope that they can really get on top of the pain management whilst he’s in hospital. Incredibly hard on you not being there, adds to you feeling helpless. I’m glad you’ve got lots of people to turn to, even if they haven’t experienced this, if you can  lean on them, these times are making everything harder. 

My husband didn’t ask for a prognosis until one day when he was insistent he knew- the consultant even tried to talk him out of knowing. Truth is, they don’t always know anyway. I remember saying to him are you sure you want to know? you can’t go back to not knowing then. I was so worried he would just give up. I remember saying  it’s a bit like food- sometimes things perish before their date other times they are good for ages after- I was so desperate to make it easier for him, sounds flippant but you get my drift...

Try to take it one day at a time & one hour at a time when you need to. I found I was starting to worry about what might lie ahead & happen next, but my mum gave me good advice, she said just remember he’s here now. They be and my mantra- he’s here now. Hope you get to chat to him lots whilst  he’s in hospital & that he gets to come home to you very soon. 
I am thinking of you both 

Sarah xx

Thank you, and not it doesn't sound flippant at all.  If I was to be honest I wouldn't want him to know but I would like to have some indication - to be able to be prepared (not that you ever can be).  Unfortunately it is the 'admin' side of things we need to get sorted as neither of us has a will (he is 44 and I am 41) and we are not yet married (though have been together 20+ years!). 

I am currently cherishing each moment I have with him be it good or bad at the moment but I know there are certain things he really wanted to do and I just hope we get to eat in our favourite restaurant one more time.  I just don't want this current lockdown situation to be the end of it and I know so many people have had to go through it at this time so I don't want to sound selfish at all.  I just find it harder at the moment when he is not here.  Just scared he may not come back to me. 

My mantra through life has always been 'baby steps' no matter what situation and that is how I am treating this at the moment - The other day a 1% increase in his blood oxygen level was great news!  So just trying to take it a day at a time.

I really appreciate your responses xx