Hi James

Sorry for delay in response but was out with  my daughter as she had check up for her and baby so extra pair of hands required.

I am very sad to read that your pain is really causing you so much distress and total unhappiness and wonder if you had given thought to contacting the nurses as the moderator kindly suggested.  It sounds as though  you really need to talk to someone who can help sort your medication and think Max has hit on a great idea re contacting the surgery to see if district nurse could assist.  Of course services seem to differ from area to area.  So far we have been extremely luck with medical team support through both hospital and GP.

Whilst I was out today hubby had a phone call from one of his consultant's support workers to check that he had everything he needed over the Christmas period and I suspect he talked to her far more than he did to me (he did not deny it when I asked!!!).  I am reading great frustration in your post (know all abou that) and I suspect that the stress and strain of the time of year is not helping your predicament and also having heard no news for a week is playing on your mind.  I will keep my fingers crossed for both you and Max that you get news soon so that you can  move forward with your treatment.  Take care, keeping you both in my thoughts.  Virtual hugs.  Jules xx

Thanks for your virtual Huggs Jules

                      You really dont know how much i mean that and the support that i get from these posts is immense, day after day i get to the door hopeing for news in the post, but when there is none my mood drops through my boot`s the last time i telephoned the mac nurse it caused up set in the house between me and my wife all she could say was that if they needed too contact you with some information then they would contact you, so now i find it hard too contact her as if she said anything too me and i told the wife she would say did she phone and i cannot lie so i say no i phoned her then she says why did you do that they have better things to do than chat with you, it is the CANCER making her like this she never was like this before. Well never mind a I am pleased to hear that Hubby is no worse, and I think that Max is getting there i hope.

                                love and best wishes  James  XXX

Hi again James

Am really sorry that the atmosphere between your and  your wife (caused by your illness) is at such a low ebb as to interfere with your wellbeing.  This is not good for either of you i am sure and whilst she cannot help how she feels about 'snooping' outsiders (This rang a bell with me as my Mum was the same when my Dad was first diagnosed with cancer) and equally seems to be pretending that you don't require extra help (I wonder if she is in 'denial' in the hope it will all just go away!), eventually she must see that you require assistance.  I am thinking (and now saying but hope you wont mind me being rather blunt as I do not wish to offend anyone here) that the time for you is now and delaying pain relief will only make the circumstances worse.  If there is a difficult atmosphere now, your dark moods relating to the pain will get worse if not treated.  Please, please take matters into your own hands and perhaps gently tell your wife that even if she cannot recognise it, you need assistance to be able to cope, denying you this when you are suffering is just not fair.  I doubt the atmosphere can be any worse than it is now and  when I get to the end of  my tether I do 'brave it out' with my hubby because he needs to know that I also have feelings.  Sometimes the bubble just has to be burst so that you can move forward.  I do wonder if she feels unwell herself and is afraid to mention it as she would not like anyone knowing that she is unable to cope.  Keeping you in my thoughts and hoping for some improvement for  you.  Jules xxx

Hi Jules   

        Yes of course you are quite right with your Diagnosis of my predicament, my wife is running the house as though there were nothing wrong, and due to my previous marriage i am unable to do anything about it ( i have never told this too any one else but when i was young i met a girl and we got married we had a son but due to my Eplipsey she left me and we got divorced , taking my son with her,so now i am i know it sounds silly but i am afraid that this might happen again if i try anything to upset her) I know that this sounds silly but now you can see why i will put up with the pain that i am suffering rather than rock the boat, I really know what you say is true, but i am living in torment in my head as well as pain, i know what you are thinking well this is a diffrent situation and person and i know but i cannot help this deep ingrained emotion OH Woe is me.

                                        kind regards and Virtual Huggs James  XXX

Hi James

No, it does  not sound at all silly as I am sure you know your wife and situation better than anyone else.  You obviously suffered great torment in your previous personal relationship, having loved and lost through another illness over which you had no control.  This you are still dealing with or perhaps re-visiting because of the situation you now find yourself in.  I know there is nothing I can say that can make things different for you but rest assured I am happy to read/listen any time you need to offload. All I can hope for, like you, is that you will manage your pain as best  you can and attend the planned appointment (such a difficult time of  year to get them to rush another through I suspect) which I hope will bring you some moves forward in your treatment plan.  Take care and chat again soon.  Jules xx

Hello again Jules

                     I am so pleased to hear that things are going so well for you and your hubby, yes I know that my life at the moment is in  a bad place, but untill this predicament came along,I shall just have to grit my teeth and make the most of a bad job I will try too grit my teeth and not show how the pain is hurting me ( Hear`s hopeing) as untill now our life has been so good and i could not forgive myself if my actions had a real adverse effect on it, still not had any new news of my appointment situation, but since i have made no show as wanting to contact people then thing`s have been quiet on the home front how is your hubbys pain getting too him not to bad i hope.  Well Max how are things going for you very well i hope I have been thinking of you a lot and wishing you the best and here`s hopeing to hear from you soon.

                                    Love and Huggs to you both   James  XXX

Morning James

Grinning and bearing it must be so difficult when you do not have your pain under control but I sense that you prefer to 'put up with it' rather than upset others.  Its a real shame that you have such a lack of close support when you so need it right now.  My frustrations seem so small in comparison.  There is no bad atomosphere in the home (other than perhaps a inner feeling of sadness) as now that I have accepted my hubby's request that the illness not be mentioned unless he starts to talk about it, we have fallen into a mainly companiable quietness (both have laptops to keep us occupied as well as  endless tv repeats!!).  Its taken a while for us both to get used to the new routine of hubby being forced into retirement probably because we spent quite a bit of time apart when he was working away and its strange now that he is here to watch every move I make and I am trying to do the housework around him!  Most of this is now done on my day's off, as he rarely get up before 10ish whereas I am an early bird and try and get most things done before he surfaces.

You asked about his pain.  Well to the best of my knowledge (mostly picked up at his consultant appointments which are currently three monthly) the 'drug cocktail' he takes twice daily (slow releasemaximum dosage tramadol) has now been working for nearly 8 months.  He has was he calls slight discomfort and his breathing is obviously afffected but at present his general health remains good which is apparently helping him.  Sadly you cannot take away the fear thats inside niggling away reminding us that nothing can be done to stop the ultimate terminal diagnosis of his cancer but from my point of view Iam lucky and happy that he is to see a 2nd Christmas since diagnosis and we have been blessed with the arrival of a second grandson this year - the grandchildren keep both of us smiling.

This weekend we are attending a friends 50th weddding party. This is going to be pretty emotional in itself as the wife has cancer/heart problems and is on oxygen 24/7 but the family and herself are determined to  have a good time and she has her portable tank attached to her wheelchair.  The event is in a hotel close by where we live so just a short drive away.

I have, in theory, only two more work days before Christmas though have offered to word Christmas Eve (my usual day off).  So far have not be asked to go in and if that stays the same we will go away to hubby's sister around 5pm Christmas Eve and return 3 days later.  As all the family are together for Christmas meal its usually a very relaxed affair (especailly as I am not the cook!!!) and she lives in the country so weather permitting (not sounding too great at present) we will be doing a few walks with the dogs so aong with packing the gifts will be several pairs of wellies).

James, I do hope I have not rambled too long and do keep using the forum to help you offload as I really do feel it helps to share, even with virtual strangers.  Bottling your emotions, as you are trying to do, to help your wife is very brave but can add to the stress of the illness itself.  Take care of yourself.  Virtual hugs returned.  Jules x

Morning Jules

              Well it seem`s that you have got your Christmas planned out and from what you write are looking forward too it,I am so pleased also to hear that you and your Hubby are having another Christmas together after his Diagnosis please have your self a wonderful time as i know that Carers have as much of a bad time as the sufferer, I am pleased to hear that you have not got a bad atmosphere in your home,and also never say sorry for writing as much as you do as i find it quite soothing to read, I still have not had any contact from any where and am hiding my pain as best as i can but that is not very easy when i cough it feels as though someone is stabbing me in the sides of my chest and as you can imagine that is not very easy too hide the AntiBiotics that i am taking AGAIN do not seem to tough the infection if anything it makes it worse, my chest is full of Phlegm I dont think i spelt that right HaHa well that made me snigger so i must do that more often to raise my spirits,this chat that we have is really good for me as you never make any assumptions as to whether i am right or wrong or if what i am doing is wrong or right, there are some that force their opponions on others thinking that what they say is the only way too do things but both you and Max are not like that.

                                       Love and Huggs  James  XXXXXXXXXXXX

Good morning James,

I do hope you don't mind me joining in on your thread so late. I have been reading this thread for a while and know you have had the support of Dear Max and Jules.

I am sorry to hear of all your suffering and wish I could" pop" round and help you out. I am also sorry that your wife is causing some of your suffering(by not wanting people coming in to your home) and you are trying to be so stoic.

Whilst I can understand your wife not wanting people noising around your home, your needs could do with being more president. Communication is a difficult thing at times with cancer. Some people just want to pretend it isn't there as that is the only way they can deal with it. I am the one with cancer in my family and my own father has never once mentioned it to me or even bothered to ask how I am. It is very hurtful but there is little I can do about it.

James, your antibiotics may need changing, but I wouldn't stop taking them until you see a Gp.

You sound as tough your pain relief needs reassessing.  Could you not get a home visit from a GP? i am sorry if I sound bossy but it's the nurse in me coming out. Oh and by the way there is nothing wrong with your speeling of phlegm.!!!!!  LOL.

Wishing you lots of pain relief.

Hugs

Annabel. xx

Hello Annabel

                  It is good to hear that you have been reading and thinking of my posts and predicament, yes you are quite right it is really lovely of both Max and Jules to too take time to read and posting messages of support and encouragement, thank you also for all of your messages and ideas,you are quite right i should think more of myself and my pain, than what my wife and family think, but it is so difficult to do with the bad atmosphere that it incurs in my day to day life, I know that my pain relief should be my and my wife`s only thought but with the way things are that is easer said than done, now i have to go over Christmas in pain untill the 6th of Jan when i get my appointment,

                    Best Wishes and love from James XXX