James, I wish I knew where the inner strength to cope comes from, as I would throw some everyone else's way.  I think this is what has thrown my hubby.  He knew I could talk for England but his comment has always been ' you have 2 ears and only 1 mouth so that must mean you should listen more and talk les;.  He certainly comes from a whole family of 'small talkers'!! so suspect I cannot change him just because he has cancer and is at home more.  We are having to get used to each other's company - he was often away on business and I could do  my own thing once the children were grown up and left home to lead their own lives - what a pleasure that has been to watch them grow and now  they are my rocks when I need them to be(yes I do have those down moments but like Max has said you try to protect your children and I want them to have good memories when the time comes). Perhaps I expect too much as he has said that to talk about his illness makes him feel worse (I would not want to be the cause of more pain.)  I have come to discover whilst being on the forum that there are so many ways of dealing with ones emotions but you cannot control how others react.  There is nothing special about how I go about it, other than I know that talking to others, sufferers/carers, shows me the way I think and feel is not always the right way but tis okay for me as it helps me to cope.

I wish your wife could read what you have written here as I am sure it would give her a surprising insight into how you feel about being left to dwell on your thoughts alone.  I suspect she is in some way protecting herself by not joining in discussions.  I am glad you found your way to the forum as in a small way its helps so many to cope whilst playing the awful waiting game.  Its a two-way street.  Many of us respond to posts because we all know what it feels like to have 'a need to communicate' and with the virtual friends here we can be honest, open and free with our thoughts/emotions and time.

My hubby knows I chat here, no idea how he feels about it and get no response when I pass on hints/tips along the way (though do occasionally see a flicker of emotion) but feel sure that many who read/respond/join the forum gain from it in some way.

Wishing you and your wife a peaceful night and some good news for you soon. Take care Jules xx

Thank you very much for being here Jules

                I know that you must be suffering emotionally for your Hubby and still you are able to come out with some really helpful comments and thoughtfull emotional support for others, your Hubby is really lucky I knew some people when i was first going through Cancer Five years ago that at first were very chatty and out going but as our treatment moved on and the effects started to show, then they changed completly, we were really friends in adversity at the out set but then things changed and a few became very violent in their coping ways and stopped talking, this i found most hurtful to me as they were my only outlet of emotion and Fear, now this time round i am greatful for finding such people as yourself and Max to bolster me up,even though i should be able to rely upon my wife the person that i had that i knew i could rely on as passed away "Mum`s" are always the best .I woke up again really early coughing and in pain in need of pain relief but this should not be the case, my nights sleep are destroyed with this Horrid thing, I so crave a full nights sleep as i am sure this would help some what ,I so hope that your Hubby is able to get a good nights sleep, I cannot wait untill i am able to sleep all night through but all of this hold up`s of my treatment does not Bode well for that too happen any time soon, regards too your Hubby.

                                          love and Huggs XXX

Afternoon James. 

Just got home from work and was glad to sit down (know I should not complain but 6hrs standing does leave me a little bone weary).  Its such a shame that friends/relatives cannot sometimes see past the illness and find the person inside but its like sufferers suddendly are aliens and people do not know how to react.  We  (or rather me on hubby's say so) told everyone about his incurable diagnosis fairly early on as the type of cancer he has (related to asbestos) can take some people very quickly (aquaintance passed away within 3 months) and others can live for some years (hoping for the best here!!). We were put in touch by the consultant with a voluntary organisation (HASAG) who were a mine of information and did all the form filling for us which at the time was really amazing and such a help.  During the approx 2 years since diagnosis he has been monitored very closely with regards to pain relief and as soon as he mentioned breakthrough pain his medication was adjusted.  Since being on slow release high dosage tramadol he has gone six months without any pain but does suffer discomfort (like mild indigestion) which sometimes affects how much he can manage to eat .

I am so sorry that your sleep is being disturbed as  know this can really affect ability to cope.  In our house its me with the sleep problems (but thats another story altogether!!) and I often manage on 4/5 hrs.  Hubby on the other hand usually goes 8hrs at night as well as several dozes during the day  if he has nothing to do or no one to visit.   Does your Mac nurse think you could change your medication at all as it must be very hard to think of anything else when you are in pain.

Its hard when a partner cannot understand the other's feelings but I  have had time to accept that my Hubby cannot control his feelings any more than I can 'change his personality' after 36yrs of marriage and somehow (though I get frustrated by it at times) we do have companionable silences and at present he does not need physical help other than occasionally being helped with getting jumpers over his head (limited upper arm mobility).  It was my daughter (and helpful posts on the forum when I first came on here) who pointed out that I could still carry on around him (he has no problem with me going out with friends as he still goes out on a Friday night with his best mate) and he prefers this 'normality'.  Further down his journey I am sure it will be harder for us both but must only think about that when it happens.

Tonight I am visiting my friend who probably does not have much time left (her cancer journey has taken over 23 yrs) and have a bottle to share with her and the family and we are having a catch up on family gossip (we both have grandchildren too so lots in common).

Always happy to chat, James. We all need to have an outlet and if the forum works for us then thats a positive thing.  Take care and I hope you get some good news from your Mac nurse/medical team soon.  Hugs are returned and peaceful thoughts sent to you and your wife.  Jules x

Hello Jules

       hello again I can remember those long days at work even though it was a while ago,you are right i am going to have to find a way to ease the pain and give me some more rest and less time to think, about things,have a real good night tonight I have still had no news so i am resigned to a long worrying wait.

                               love   james XX

Morning James

Just a quick response as we have been having dodgy internet access for the past 24hrs so dont want you thinking I am not around!!  My visit to my friend had to be postponed as she had difficult family issues to deal with (she was very upset on the phone so we did manage a bit of a chat - nothing to do with her illness which she remains very calm about - amazing lady).  I will try and drop in on my way home from work one day next week when I get the ok.

It must be soul destroying still having no better news and the continual worrying will not help you relax/sleep. I really feel for you being stuck in limbo when all you want is to get back to treatment plan so you feel you can move forward on the journey you are facing.  Lots of words come to mind but not to be seen in print!!!

Just about to get hubby up as we are babysitting/watching grandson's Christmas assembly this morning and he needs a bit of time to collect himself as its been a while since he has seen this time of day - he says he will catch up on the zzzzz's this afternoon before he goes out with his friend this evening.

Take care and hope will will be chatting over better news for you soon.  Regards to you both.  Jules xx

Goodmorning Jules

                     I am so sorry to hear that you did not get to see your friend as i know how much you were looking forward to it, that would of been your break from things giving you a bit of you which we all need,I am up again early to take my pain relief I seem to be needing it more and more and less and less sleep never mind still no more news from the mac nurse or hospital really resigned too a long wait and a lot of worry I am sure that the specialist will have a good christmas ,no i should not feel so uncareing i am sure that he is caught in the appointment trap too (too many patients not enough time) but that does not help me and my feelings/moods so sad i must look and sound like the Grinch Ha Ha say hello to your Hubby for me.

                                  Love         James  XXX

Hi James & Jules ....

So sorry you are in this awful limbo James - I presume the McMillan Nurse had no more luck than you in bringing your appt forward? Could your GP step in and help do you think? Sometimes I think the drugs influence your sleep - I am sleeping a lot better since stopping the chemo for my op but I do take a sleeping tablet 2/3 times a week prescribed by the GP which really helps - sometimes we cope a little better if we have a good nights kip. I have a friend who is terminally ill and she came to see me yesterday. Her husband is in 'denial' about her illness too and it was so sad talking to her. She is clearly very ill (I was shocked to see such a difference in 2wks) but if she mentions anything at all to her hubbie about how poorly she is feeling or her fears of last christmas/birthday/anniversary etc., he just says 'oh you will be around for a long while yet'. It is really hurting her and she feels alone with it all. Made me think of you and many others who have to deal with this - I felt very sad.

Sorry to hear about your friend Jules - I hope whatever it is is sorted out soon, she doesnt really need family crisis's right now. Hopefully you will see her soon and be able to help her. Enjoy your grandsons service this morning - I used to cry through the whole thing with my kids - happy memories!

Much love to you both x

Hello Max

       Your friends situation as to her Hubby sounds very much like my own my wife has put up her protective wall which she hides behind and every time that i mention the pain or the Cancer she says oh come on you will be alright get on with it and then carrys on as if i have not mentioned anything about my health, it makes me feel so sad and that in turn impacts on all my other problems, so I end up not mentioning my predicament and sitting down hurting in silence so as not too cause any upset in the house, but surley you should not have to carry on like that.

               Any way how are you feeling as well as can be expected I hope, you really dont know how much i get out of being able to talk to both yourself and Jules I really dont know what i would do with out you boyh at the end of my (Modem!!), it is surprising how much better for a while that I feel, I think that Jules Hubby is well looked after and it should not make me feel envious but i wish that my wife was a lot like her, I am sure that I would be copeing a lot better if she were.

                    love and Regards  James XXX

I am sure it would help you if you could be more open at home and discuss things with your wife. Sadly though James, life doesnt always work out the way we want it and I'm sure your wife loves you very much but finds it all overwhelming and hard to talk about. Maybe one day, you could write her a letter and tell her how much the silence hurts and makes you feel isolated - just a thought! Sometimes when things arent discussed, we all make assumptions that everyone is coping well - obviously this isnt always the case.

Be assured that Jules and I are always here for you and you can open your heart here whenever needed.

I have got most things ready for my op on Monday - nightclothes packed etc and all xmas cards sent and pressies bought and wrapped. Hubbies home from being away for work and is now off for 3wks so he can care for me (bless him).  I must say I am feeling a wee bit nervous about it all and trying to put it out of my mind until the big day. Not easy though! I am so scared that I will get an infection or the vein will rupture and I get internal bleeding - so much could go wrong and somehow I worry my luck is about to run out. What a whoos!

Take care James and will talk soon - hope you get a good nights sleep and your pain is copeable. Thinking of you and as said previously, am always here for you as I know you are for me.  Much love x