Its the unknown....

Hi Shewray.

Just wanted to say hello, sometimes you just know when its bad, i think we have a 6th sense.

Have you been given any prognosis and would you want one? Personally I did and we were asked if we wanted to know. Others dont want to and thats fine too. 

My husband didnt want to sort anything, we was too tired to, so it wasnt a problem we had. It could be his way of processing this terrible news. Are you able to suggest if he wants to sort things, he just does eg one box? 

Are you getting any support, family, friends, hospice etc, please make use of as many as you can.

Big hugs

Basically we are on our own BUT  we can contact services.  According to local council we are not entitled to any help! 

The dude is scared at the end of the day - understandable.  He wants to do everything to make it easier for me.  He knows the prognosis is dire and does seem to be in denial a fair bit.

I would rather know exactly - about everything - that way I can process things in my own mind.  At the moment I am trying to make every day count and make sure he knows how much he is loved.  

Tomorrow I am contacting the MDT crew at the hospital to arrange a contrast scan - that way he will SEE why he has difficulty swallowing.  He tells the district nurse he can eat anything :(

It is so difficult trying to get him to eat anything 

My hubby had the same cancer. He was also fobbed off by the gp & only got diagnosed when he took himself to a&e because he couldnt stand the pain anymore . He was diagnosed in August & died in November We went through the emptying everything out stage. I've never shredded so much old paperwork.. I suppose it was one of those jobs you keep putting off. Loads of old birthday cards,trophies & photos got binned as soon has hubby was told he was terminal. He was initially discharged  from hospital with a food pump but he had a stent fitted as he was constantly spitting up slime. This stopped immediately after the stent was fitted.he started eating again though it was only soft or pureed food & put on a bit of weight. He lost it all again when the stent slipped over the tumour & caused internal bleeding. Hubby was on a syringe driver from diagnosis & his morphine dose in it was increased every couple of weeks. He was initially on 4 hourly top ups of oramorph & liquid paracetamol  but he ended up on hourly top ups when needed. He also got very temperamental..I put this down to being scared of the future held. He sometimes got quite nasty with me to the point I had to go into another room to cry. One day I said to him that I didnt sign up for this type of behaviour & if I wasn't good enough for him I'd leave him to get on with it himself.  He apologised . When he was in hospital for the final time before being transferred to the hospice they gave him something to calm him down & help his moods. Perhaps you could ask your palliative team to review his medications. It is just trial & error with the meds.

He isnt on any meds  - luckily he has never had any pain, But we have oramorph and anticipatory meds.  It took 9 and a half hours to hear back from MDT .  They havent met him  - things are done over the phone.  The contrast scan wont be done because he refuses to have a stent fitted.  District nurse coming out to take bloods as he may have had an upper GI bleed.  Oh and was asked what the palliative care nurses thought of how he is dealing with it all - hmmm not had a single visit from them. Did see a lady from the team but she wasnt medical.

Hes been getting up early - sometimes at 4am.   I liken it to having a toddler with ADHD.

It doesnt help when we have a ' friend' who visits  whenever she feels like it - so she can smoke!  (Allegedly her husband of 30+ years doesnt know she smokes!)  The dude smokes but sits next to an open window.

I really have to bite my tongue not to lose my temper with her stupid comments.  But I have too much respect for the dude - I very rarely even raise my voice!  

Its all a steep learning curve - and no two journeys are the same.  All i hope for him is that he continues with no pain 

Same...its the unknown. The boy i knew is hardly there most days. I understand hes dealing with so much pain and anxiety and here i am upset over my feelings.  I feel guilty and selfish for falling apart

You need to get in touch with palliative team.Ask the district nursrs to refer you. We were told you dont have to be terminal to be referred to them.It sounds like his tumour is bleeding like my hubby's.  If your partner starts being sick & its  grey he needs to go to hospital asap. My Hubby was put in hospital by the district nurses  because of this & was was put on TXA to help with the bleeding ...he had 8 units of blood over a few days but his hemaglobin levels never came back up so they stopped all treatment apart from pain relief..the hospital didnt even do any observations. They then took him off the TXA & when we got to the hospice they were disgusted as he should never have been taken off that drug...they immediately re- instated it.

Hi netty43. 

Most of us go through that guilt and selfish feeling when we are caring for someone who is so poorly. But you are not, I was not, other people on here are not. I remember when I was offered night carers from the hospice so I could sleep in a bed rather than the settee, i turned them down a couple of times because I felt selfish taking that support if others beeded it more. I was duly told never to turn  it down, and I didnt after that. 

Its completely normal to have those feelings, when you watch the person you love most in the world, deteriorating in front of you and often, feeling helpless. Its also ok to fall apart, caring is exhausting physically and emotionally. It helps if you have someone to talk to, whether thats palliative care team family or friends. Coming here helps, I wish I had used this more when I was caring. My hospice were very good towards the end and did give me support as well. 

Thank you for replying.

Im a fixer and this is something I cannot fix.

My boy, the most kindest, beautiful inside and out boy