Well....after a 6 hour delay for transport my wife came home late yesterday - and seems the happier for it. For now practicalities are occupying my time/thinking which is good - accommodation issues, sorting out what medications when, which ones will need repeat prescriptions soonest (assuming I can actually get GP to DO anything), sorting financials etc. The Social Care promised on Wednesday was abruptly withdrawn on Thursday (although it of course states in letter to GP that this is in place!). The request by discharge team for a District Nurse visit on arrival home yesterday was of course simply ignored - I very much doubt we will ever receive such a visit. A MacMillan community nurse visit has also been requested, but given our location I am sceptical that this will actually happen. So, as I expected it's all down to me and herself.  

There is no explicit statement in the discharge letter as to WHY no treatment possible. Nor as to what this means for expectancy. No information as to how to obtain a DS 1500 or who will issue - given that my wife would obviously be aware of such a form and fast track Benefit and knowing exactly what it means, the few quid it offers are simply not worth the damage it would cause so in reality I shall almost certainly not pursue the matter. (Yes, she understands her situation, but has decided for now to put the future "on the back burner" - seems sensible to me.) 

To get some help through all this (and I am again in limbo awaiting results of tests on that part of my tongue removed (sore!) on Tuesday) one needs in simple terms to be very rich or very poor. How I wish we'd blown all our cash on fun stuff......it's not that I'd mind paying for some help, just that the public authorities don't offer that option. 

Hi there ... 

So sorry you find yourself in this situation... life is unfare and cancer is crule ...

As to wanting to know time periods ... it's really near impossible to be given them .. As you can have two people with the same cancer and same outcome but one could live far longer then expected and one could go a lot quicker ...

So I'd say to you, don't look for dates or into the future too much as then it's over whelming. . Live in the day ... make everyday count for both of you ... you still have her today, so treat to day as a bonus ...and the same for every tomorrow you get to gether ... 

If you call McMillan they will give you access to a financial adviser who can go through everything with you and send you the forms ..I would think your wife probably knows her prognosis ... and as you have your own journey too, it just may bring you together and talk and LISTEN to each other ..

I know I've made all my plans and wrote my letters to those who l love ... it is a weight off my shoulders and they are put safely away ... so she may have things she wants to say or do or tell you ... just give her an opening, like asking if she wants to talk about anything, you'll be there to listen ... then you can share tears, hugs, feelings and admit it's scary .. 

If you can walk by her side on this journey of hers, holding her hand and not thinking of her going, just hold on today, and you'll make memories to keep in your heart forever ...that's my way of dealing with cancer ... it takes so much away from us, don't let it take TO DAY ..... Chrissie x

Thank you for your considered and thoughtful reply, Chriss.

I am hoping that MacMillan can offer some hands on help with daily needs and issues such as pain relief arrangements. Finances I can handle (assuming my post-op tests don't show anything too bad). 

With our rational and objective hats on we do not consider all this as "unfair" - we have lived, at times, hard and fast and certainly dangerous lives - somewhere we have photos from before I knew her of herself overland in Afghanistan in early '60s, before the 'ippy trail, with serious dude tribesmen pointing muzzle loaders at her - and large quick m'cycles were my thing for some years. We are both alcoholics who have not had a single drop for over 15 years.  And more recently we fitted in inland  tours of a number of North African countries when other than the beach areaes were deserted and thus very cheap for very good reasons! 

If anything, it is "unfair" that we have outlived many of our contemporaries - we've had a good run for our money as the saying goes. I felt a certain perverse pride in outliving Lemmy!

The same rationality forces us to want to KNOW. But our affairs such as they are are pretty much in order and yes I understand how difficult to predict individual outcomes and yes we will try to focus on today. We've never found pleasure in the "small things" that some people seem to recognise - I wish that we had. "Contented" was never a word used about either of us. Right now is in many ways no scarier than life ever has been. 

What we might want to tell each other after 48 years may well probably be best left unsaid.

Our family is small and immediate - 2 children, 2 grandchildren and 2 nieces and that's it. The 4 adults all know exactly what we know. We have no relationships to repair (or otherwise). In essence I guess we'd both just like to get it over with now. The wife and I told 1 doctor best prescription for us, our family and society in general would be a shotgun and 2 cartridges, but he got very pompous and flustered!

I am so glad that you have been able - in every sense - to cope your way and do the things that are important to you. I suppose we all find comfort in different ways. Maybe I will yet find out mine. 

Thank you and rock on.

The sense of urgency being shown by Community Nurse and (even!) GP sort of answering my "question". And the GP did not demur when I said looking "not months" to me. Wants to estabilish resuscitation wishes early next week - he called unannounced when daughter and grandson visiting and hereslf didn't want to discuss "details". 

GP saw no reason why with involvement of MacMillan (still awaited) she can remain at home with same degree of pain management as externally.

Six weeks I reckon. Not sure I can take it.

Hi there ... hold on in there ... sometimes we just don't have a choice ... but know your not alone... many on here are in the same place as you are now ... wer all there with you, and all on the same nasty rollercoaster. . Just everyone's at different stages ... so you can put those feelings down on here and others know just what you mean ... sending you both a vertual hug ....Chrissie x