Morning James and Max

Hoping my internet stays 'up and running' as it seems to be in a dither the last couple of days and sometimes will not load (think our router is to blame but not really up on the techy stuff).

Max, I poached urostar's thread to wish you well for Monday but will add it here too - the biggest hug you can imagine is sent your way to see you through.  Like James telling you to be calm and let the experts take care of you is easier said than done especially when you have endured so much already.  You will be fully supported by that loving other half and the family and you can kick that tumour's butt into touch and be home again to enjoy some pampering.

James  I am so sorry your support at home is not as you would wish but like me you will cope with the help of your forum buddies.  Its a shame our other halves cannot understand our innermost needs but sometimes the hurt is just too much for them to cope with too. Its taken me nearly two years to understand and respect hubby's decision not to discuss things openly with me.  His oncologist recognised the signs early on and always asks how I am and if there is anything I need answers to when we go for his check ups so in that respect I learn how he is (albeit at 3 monthly intervals at present!!).  At the end of the day we cannot control others, just ourselves.  Its just a thought but our local hospital/hospice runs support groups that both sufferers and carers (either alone or together) can join  and I was wondering if your Mac nurse could let you know if you could go to something local.  Here you would be able to get some of those built up feelings  and emotions offloaded.  I also like Max's idea of writing how you feel down  in a letter and maybe leaving it for your family to find.  This way they could read it in private and gain some understanding of how their reluctance to talk is affecting you. Its not easy is it?  I am very lucky to have my daughter who likes to discuss things openly so I do have family support too. Sometimes I would rather not burden them with it all though.

Hope you can soon be given more help re your medication/lack of sleep problems as this must just heighten your emotional torment.  Keeping you in  my thoughts and sending peaceful thoughts.

Have spent the first couple of hours this morning (while hubby still sleeping) putting up Christmas decorations as our grandchildren will be visiting later (their weekend away cancelled due tofamily car being beyond repair and now gone to the 'crusher'!!!  ) and it will be lovely to see the eldest's face brighten at the sight.  The eight week old is fascinated by the sparkly decorations at their flat and they have his Christmas outfit sorted (I bought themed bibs for Christmas Day which shows how much a family day means) - we are still much like the children ourselves at this time of year. Hubby is now up and enjoying breakfast!! (which has reminded me I did not have one!!  so I can have elevenses).

Enough of my rambling but hope to be able to chat with my virtual friends again soon.  Take care. Jules xx

Hello Jules

           it seems that you have a lot on your plate at the moment what with Hubby and Family plus all of your own worries that you are trying too hide so well, but you cannot keep it going for others and yourself without there being some times when you need some bolstering up, and i hope that both Max and myself apart from needing support are able to supply support for you and anyone else that needs us,at the moment i feel such a drain on the suppoty of others my life at the moment is a mess , this morning my chest is causing me so much pain when i breath, and this in turn is giving me a real bad headache , still my suffering is nothing to that of Max`s or the mental torture that you are going through on the quiet, due to watching your loved one going through all his pain, I have tried everything with my wife my middle daughter understands my sorrow at not being able to get through to her mum, she has tried her self to do so but to no avail, so I am forever set to be alone in my battle, I am upset as the atmosphere in the house has altered and is very heavy everyone is snspping at each other over the smallest thing and it is really filling me with sorrow as the house was always full of laughter and fun OH!! where has it all gone, it is bad when you cant wait to be left alone for a good cry to relieve the pressure.

                                Love  James XXX

Hi James

Just got my internet link back again (in and out like a blue xxxxx fly).  I am so sorry that you are in so much pain and have no support indoors.  Not sure  how old  your children are but if yoru wife has her barriers up like my husband I have come to the conclusion that its their problem (told my hubby if he cannot be open with me I will just have to put up with it) and there is no 'atmosphere' with regards everyday chat.  I have learnt the hard way over the last two years not to try 'illness' conversation. Of course its very different for you as you are the one suffering and really need to offload and it would be lovely if your wife was 'there' for you with support and comforting arms.  I can only assume she must be terrified of losing you on the inside and her way of dealing with it is blanking it out totally. Mu hubby's pain is under control most of the time at present luckily and though unable to do the job he loved (this causes his much heartache I know) we are blessed with close family and the baby has been a great bonus (we did not think my hubby would see him born) and with Christmas a short time away I feel blessed to still have him in my life (with or without conversation).  He is aware I chat on the forum and I think this gives him some relief as he is aware that I worry about him but neither of us can control the cancer and its ultimate effects.  I  know that the support we all receive here is worth its weight in gold and  do hope its of some help to you in your troubled times.  Sending peaceful thoughts (this is the 3rd attempt so fingers crossed.  Hope you will soon have some pain relief, sleep and date for surgery.  Take care  Julesxx

Good morning Jules

                  Well here  am agan up early and talkin extra pain relief, thank god for early tv on bbc one , I dont know how too break the atmosphere in the house and it is pulling me down I hate what this cancer has done too me over the last five years and counting , my eldest daughter does not come around any more unless it is for babysitting or to loan something she knows how much i love her so would not turn her down ( This is all due to the atmosphere in the house) which is not caused by anything other than this Horrid Cancer, they wont listen too me it seems to them all that it is my fault and I should pull my socks up and get on with it, then I hear them all talking about me and how my health is affecting me but they wont talk too my face about it, I really feel that things would be better if I was not here any more.

                                                Love          James XXX

Oh James, I am so sorry that this b.............. illness is causing so much pain both mentally and physically.  You have been fighting so long and the tiredness, pain and loneliness you are suffering is so not fair.  Please keep talking here, we will do all we can to support you (I am hoping my internet access does not let us down in this respect).  I am wondering if it would be worth you ringing the nurses on the freephone number on this site to talk through everything you feel with them.  I can read the frustration in your post at feeling alienated in your own home and though everyone knows (who has cancer in the family) how much the illness effects the sufferer and that there is no control over what is happening, I suspect your family members have the frustration (like I experience) of not being able to help, change things, make you better. Yes, I understand you just want to have them talk to you, stop pretending its not happening to you and let you vent about how you feel.  I am not sure what would happen if this took place but it sounds that the family as a whole needs more support.  Perhaps  your  Mac nurse could talk to you together.  Please write down how you really feel whilst you are feeling it, hand it to your wife/daughters without saying a word (very difficult I know) and just maybe thery can be shown how the current atmosphere is hurting you perhaps even more than the cancer.  I have let my husband know how I feel when I had a bit of courage, he listened and just told me it was too hard for him to talk about it.  I respect and love him too much to be angry at him so focus my 'hate' on the cancer (the frustration I bring here when it threatens to overwhelm me).  Typing this brings tears to my eyes but I am determined to be 'stronger' than the cancer.  I refuse now to let the 'silence' of my man torment us when we do not know how long he may have.

I sometimes have to mentally switch off and remember that its the illness inside my man that makes him miserable uncommunicative and disinterested in general day to day life that  he once took so much for granted.  Just on Saturday for 5 minutes  he sat on the floor and played with our eldest grandson - just racing cars across the carpet - my daughter and I were taken aback - why? because this was the first real interaction for many months - we have stored another good memory and my hubby does not even realise it!!

Off to work soon so will have to finish now. Wish I could ease your pain but keep on sharing James and please talk toyour GP about your true feelings to see if they can get you and the family some more emotional support.  Virtual hugs and kind thoughts. Jules x

Hello Jules

         I know what pain is like at the moment my chest and shoulder are really making feel so ill , it really is so sore and the coughing is making my head ache I have not heard from any one since last week when I last spoke to my Macmillan nurse last week she said that she would only contact me if she had any new news she said that this was because her case load prohibited her from spending too much time talking to patients where the specialists have given me an appointment and she could do no more but her really poorly patients take up all her time, so I have been forgotten about because the dr`s are dragging their feet  but they are not putting up with the pain the mac nurse seems to think that she has done all that she can do at the moment, my wife is quite happy with that as she does not like people in places of some sort of power as she says poking their nose in where it is not wanted by her, she has got this old fashined idea that once you ,let them in then you cant cope and are a week family. she will not contact anyone unless she has too but that is not helping me, she is quite happy to keep any one in that sort of position out of the house, it looks as though i am going to have to go through Christmas and the new year in Pain and not feeling so good with no new news i have a feeling this is the reason for the atmosphere in the house, I am sorry for the way this post is so difficult to understand but with the pain i have found it difficult to express myself well.

                                                  love James  XXX

Hi James

Sorry to read that you are in pain. If your wife is not comfortable with health professionals visiting your house, you could call or email our nurses for advice. Their contact details are here.

Best wishes

Jane

Hi James..... you sound so down! Am on my kindle so can't write much but had a little thought. Don't know where you live but in our area we have a band of district nurses associated to the GP surgeries. Wonder if you called your GP surgery and asked them to arrange a district nurse to see you regarding the pain if they may help? I was referred when I was diagnosed and they contact me now and then to see if I need any help. Xxx

Hello Max

     I am so pleased too hear from you, here`s hopeing that you are well yourself and that things in your fight with this Horrid thing is in a good place or as good as can be expected,I am sorry to burden you and others on this site with my petty worries, but i woke up early again this morning with pain in my chest and shoulder, and the coughing which causes pains in my chest that are like knives being inserted is causing my severe Headaches, but this is all petty compared to the likes of yourself, I shall have to Grin and bear it untill the 6th of January when I have my appointment as my wife likes to keep outsiders at a distance, and it is no good me contacting any one as she gets quite upset if i do she says why did you do that we dont need anyone snooping i can do all that they can and the atmosphere gets thicker I am so sorry upsetting her as i love her so much, I am sure if i grit my teeth then i can wait till the 6th and they will sort out the pain relief for me.

                 Hopeing you feel better  Love James  XXX

Hi James ... got the computer now so can type a bit easier.  Your pain sounds terrible - and not something you want to keep going on with over xmas, or for another 2-3wks!  I know you are trying to be brave - but I am sure your GP can help you with some pain control if you go and see him/her. You have a while to wait yet before your hospital appt and the pain and lack of sleep will wear you down even further if you dont seek help my friend.

I know you love your wife very much but her dislikes/fears are not yours, so you have every right to contact whoever you like if it helps with your wellbeing. Sadly, she cant sort this pain out for you herself and you need some medical help with it.  It is so sad to hear that the atmosphere at home is so difficult - just at a time when you need all the support you can get. Take care James - and please phone and see the doctor! xx