New to all this, controlling much?

Hi Lady

I think your approach sounds perfectly sensible - sort out the practical side of things while you can (and it can be a useful distraction, ‘busying’ yourself). The emotional side of things is much harder.

My Mum has the same cancer - diagnosed last month - but she’s 91 and we were told straightaway that they wouldn’t be able to treat it. So maybe in your case there will be forms of treatment they can try.

Everyone’s journey is different but I’ve found loads of useful advice and compassionate support in this forum, so keep logging in and asking questions. I too like trying to find practical solutions and getting on top of the things I can control. Ticking things off lists means a small sense of achievement when everything else seems insurmountable. 

Good luck with the treatment meeting - and the war room! 

My hubby didnt want anyone to know he had cancer @ 1st. It was only once we were told it was terminal & wouldn't see Christmas that I informed his family.  Be prepared to become a PA/ secretary as there will be appointments with upper gastro team/ palliative team & various other hospital appointments. I kept a notepad in my handbag at all times. I even designed a chart for hubby's meds. So I  could keep track of what he was on ,dosage & what time I'd given them. I'm naturally a very organised person..its the librarian in me!! My hubby said on numerous occasions he wouldn't have coped without me. The district nurses knew I could be relied on to have all his meds ordered & ready for them when they came to do his syring driver ..although I had constant battles with the GP receptionists not supplying enough morphine etc. At one point they said he hadnt been prescribed a certain drug from the hospital I told them that if they actually looked at his discharge notes it was on page 3 !! Contact your local Macmillan staff as they will be able to advise if you can apply for any benefits. They arranged for us to claim attendance allowance..( this isnt means tested).they even filled in the forms for us..

Thank you for your reply, I'm so sorry you're in this too. The "busying" definitely resonates with me. Avoiding the emotional challenge and trying to control the rest. Sending strength your way lovely.

Thank you, again I'm so sorry you're in this too.

I can relate to having a private husband, mine told his family fairly quickly which is good but I think he'd be horrified if he knew how many of my circle actually know already.

We have a meeting with Macmillan next Friday - we need to understand what benefits we may be eligible for fairly quickly since my husband is self employed. Great work on the meds spreadsheet and thank you for the heads up on being assertive and organised when GP reception makes mistakes. I find it a huge source of comfort just knowing the detail of what's in store. 

I'm no longer in this situation as my hubby died in November just 3 months after being diagnosed. If you need any advice. I will help if I can.Its a very fast learning curve. Your husband should be on the GSF ( Gold Standard Framework) you dont have to be terminal to have the palliative team involved .

Oesophageal cancer is a horrible disease. 

As per Detty's message, Macmillan helped Mum and I with Attendance Allowance and something else - Disability Premium or something. It came through really quickly too, within a fortnight.

I'm self-employed myself - terrified of losing clients left, right and centre because I'm juggling so much - so I do understand that adds a whole other dimension to your situation. I must admit I feel quite envious of employed people who can take time off and have sick pay! 

I think I'm at the point of having a Detty-style meds sheet ... Mum has taken more tablets in the last few weeks than I think she's taken throughout the rest of her life! 

Thank you for taking the time to reply, I am so very sorry for your loss. I really appreciate the note about GSF, I didn't know about this. Sending healing for your grief.