Morning MAx

Such a lovely message from you to lift both your day and everyone following your journey.  Have a great weekend.

Hubby appears to be coping quite well and enjoyed an evening in the 'local' with his best mate whilst I had a little flutter (and small win) at the bingo followed by a relaxing glass of wine with my friend.  Glad to say we were home before even more heavy rain arrived and have woken to still more of the wet stuff this morning. Also received better news for my friend who has been battling cancer for over 23 years now. Her consultant said he was pleased with her palliative care progress and has  been able to drop some of her steroid meds so it seems this weekend is one for happy news - just wonderful.  Jules xx

Morning James

Fingers are being kept (virtually) crossed that your test will let you treatment begin sooner rather than later.  Our experience with the Mac nurse (only contact so far during the time hubby was having 'holding chemo' at the hospital - not been to the home) was very  much a case of contact her (which meant leaving a message on an answerphone) if we needed to.  However with hubby's situation he is being regularly seen by his hospital consultant who has her own follow up 'lung support workers' who ring from time to time to make sure he has everything he needs and they are usually his first port of call if he notices any changes (so far has managed quite well on the three monthly appointments).  In between these checks he sees our GP for  talks surrounding general health and it was the GP who put him on the anti depressents and has adjusted his pain relief because of whatever hubby told her.  Hubby's lack of motivation to enjoy the reasonable quality of life he currently has was something both I, consultant and GP all picked up on and sadly the anti depressents really do not seem to have made any difference.  He just never wanted to retire (even when he was well) and though hates being at home 24/7 does not seem to be able to take an interest in much at all - its very sad as at the moment he can still get around unaided and drive but unless someone actually asks him to do something he just sits all day in front of the tv.  I think its just that work was his life and he has no idea how to adjust (and has refused help that has been offered numerous times in the last two years since diagnosis).  This means that I now do most things on my own (always asking him before I go) .  However he is still meeting up with his friend on a Friday night and really enjoyed it yesterday so I do see a spark in him from time to time.

It must be so hard to lift your mood when  your pain is out of control so please contact your GP/nurse and be absolutely honest about how bad you feel both painwise and the affect it is having on your mood.  Remember too that though your wife might not like talking to you (or having y ou talk to her) about your feelings, inside she must be tied up in knots worrying about something she has no control over (believe me I can relate to that).

Sending virtual hugs to  you both during this rotten journey we have to face.  Jules xx

Good morning Jules

                   Hello jules the pain in my shoulder has woke me up again very early and then that started the Coughing, so i thought that i would come on line and read some of my posts and that helped a little plus the cocktail of drugs, then i went to my E-Mails and my surgeos secretary has written saying that they are going too discuss my case today after the Lung Function tests that i had she said that she would then let me know by E-Mail this afternoon how it goes, so i should be able to let you know tonight how it has gone,how? is your Hubby getting on is he finding it any easier yet also how are you you need to take care of your self too, it was good to hear from Max I hope that she is getting on well with the lead up to her operations..

                             Love and Huggs James  XXX

Morning James

What a nuisance that your shoulder pain/coughing is causing you loss of sleep and do hope it will not be too long before they can get your medication to the right level to control this as pain and loss of sleep will enevitably drag you down.

  6 a.m. is my normal start when its a work day (as it is today) and though I woke at 4 a.m.managed to doze back off again.Mind you even when I am not going to work I am usually up early as once awake I hate being in bed and would rather be up and about.

  When my hubby had the shoulder pain it turned out to be caused by muscle problems (he was referred for physio at his last check up 3mths ago and has now completed this and is once again to freely move his arms above his head without discomfort) though his consultant said it had probably been bought about because he had become less active.  He is still doing his chair exercises. One thing he has not yet suffered with is the inability to sleep.  He spends a lot of the day asleep in front of the tv (his way of coping with no work to do plus his medication I assume) and though he often stays up til 2.am. (probably due to the sleep he has had during the day) he then usually sleeps till 10ish).  Not sure how his new medication which he will be taking three times a day instead of twice will effect this regime   He too has had increased coughing since his cold at Christmas but this does seem to be effective in clearing his chest and so far has not required antibiotics.  As to how his pain levels are at present he is not sharing that information but has now begun to  be even more withdrawn as his next check up (next Tuesday) approaches.  This has become part of his 'normal' behaviour and seems to be his way of coping but of course for me I am aprehensive anyway as the appointment is when I actually find out how he feels instead of having to guess!  One thing I know for sure is that he has lost a little weight even though at present his eating is not so bad even though I know he has to make a supreme effort to face food.

Hope you get a 'good call' from the Lung Nurse later today and that following your tests  you will be able to have the necessary treatment to help improve your condition.  Do let us know when you can.

I see Max is still being a great support to others on the forum and I hope she is enjoying life with the family before her op next week. (Max if you are reading this sending lots of hugs and good wishes for next week).

Well must sign off now as need to do a bit of housework before going out.  Take care and sending hugs back.  Jules xx

Hi James

Was wondering how you are doing following your talk with the LungNurse.  Hopefully you have some news as to how to move forward with treatment and help with controlling your pain. Sending kind thoughts and hugs.Jules x

Hello Jules

  Well i have been sent an e-mail from the resp nurse and i have three options, the Surgeon is not happy with the operation at the moment as he thinks that i will not be able to come through the operation and off the ventilator but that can still happen if my lung function gets any better,the next is where they put a wire down onto the Tumor and burn it out but this has not been tried much so they do not have much info on how well it works, then there i Radiotherapy where i would go into hospital and be blasted for three times each day for twelve days but there would be colleteral damage to surrounding tissue, so from what they say they all have their bad points, please could you ponder over what i have written and give me your oponion,and also max if she is reading,well how is your hubby getting on well i hope.

       love and huggs  james xxxx

p.s   Max i hope that things have gone well for you

Hi James ..... Im okay thanks - going to London on Tuesday and having  my tumour ablation on Weds evening. I see you have to make some decisions regarding your treatment too. It may be a really good time for you to ring the nurses here at CR - they should have information on the procedures you have been told about. It is so very hard when we are given a choice of treatment, it has happened to me several times. It makes me wish that the consultants would just tell us what they think is the best option instead of expecting us to know - after all, they are the professionals!

It sounds like an operation may be rather risky  for you at this present time. Ablation is another option they have given you. Microwave ablation is widely used nowadays so I would be surprised if the radiologists at your hospital dont know much about it. Probably the consultant you saw doesn't have a lot of information as it wouldn't be something he does, but if you ask to be referred to a Radiologist - they should be able to give you more information about the safety of this procedure. Microwave ablation (heat) can cause vein/tissue/vessel damage so dependent on where your tumour is situated, would depend on how safe/dangerous this would be for you. In my case, my tumour is growing around a main vein so it is too dangerous. I am now having Nanoknife ablation which is a procedure that uses electrical currents to destroy the cancer cells. It is a new treatment that does not cause other damage but sadly as yet, is only available privately to suitable candidates (good heart function etc).  I guess radiotherapy is widely used too but if having that can cause other damage, you would need to ask if this damage would be life-threatening to you and if your lung could function well after such a procedure.  Maybe your daughter could help you to research all the treatments that have been offered to you so that you can weigh up the pros and cons and make an informed decision.  All procedures come with a risk but you need to choose the one with the least risk and most effective cure rates for your particular disease. Your McMillan nurse may also be able to help James - she seems very kind and has helped you in the past.

I am sorry that you have been left to make these decisions - and hope there is someone close to you who will be able to help you with some research and/or advice. Take care and I hope your weekend is peaceful.   Max x

Hello Max

        Well i hope that you have good results with your treatment i have been asking around on the net for advice about my treatment options, i do not seem to be getting much help at home they all have other things going on which takes up all their time, my mac nurse is good but she seem to be always out when i call and i have not seen her for three weeks, it looks as though i am going to have to ponder the treatments my self plus help from such as yourself, thanks dear Max look after yourself and i prey that you have a good out come

           love and Huggs  James xx

Morning James

Well I have pondered as you asked and see that the lovely Max has offered many words of wisdom and she is able to see it from the same side of the fence, so to speak, as yourself.  As hubby has never had 'options' we have never been in the position you now found yourself.  I can understand the quandary you find yourself in and being unable to discuss your feelings/options with your own family must be devastating.  My only real thoughts on this would be to contact your GP/Lung nurse and ask him/her who you can contact  to talk through thoroughly the choices you now face and then go with your heart as to which will give you the best chance of better quality of life.  I really feel inadequate to offer a view having never been faced with such a decision but am sure Max is right when suggesting you could call the nurses on the site and maybe they can help you understand more about what is on offer.  Do let us know how you get on.

As to hubby its been a difficult few days painwise.  The change in medication the GP arranged has left him more in pain than the previous regime so for now he has reverted back (it was just a trial to see if it made a difference). Like yourself he is now having breakthrough pain before next medication is due so feel sure when he has his appointment on Tuesday we will be once again thrown in to what drug cocktail can be tried now.  Infuriating for him especially as he had been coping so well but not unexpected as we were told the 'holding' chemo would only last so long and actually it has been just over a year since he had that so consider myself so lucky that he is still with me.  Despite the fact that he does not wish to talk about things I have explained to him that whilst everything to do with the cancer is outside of our control it hurts me to be be 'blocked' out totally and reminded him that we are a partnership and that as hard as it is to talk about, bottling it up is not good for him and leaving me guessing is causing more stress than if I know how he really feels.  Having made my little speech (very short) I don't think it will make any difference but selfishly, form  me, I needed to get it out!!

Hope you can find a way to make the right decision for  you and send hugs for a peaceful weekend.  Jules xx