How to help ? Lung cancer. Not yet got full diagnosis , but it has spread

Dear JSB,

Please remember to look after yourself too!

If you tire yourself out, you cannot be effective!

Listen to Jsb 's music. GLORIOUS!

Bless you! Just don’t read too much! The hospital staff are stroppy with me for that! Although I have only read British stuff and I am a nurse! But you torture yourself for answers and everything you suggest gets thrown back at you! I have a natural curiosity for knowledge anyway and like to know why and how! 
My husband won’t let me mention the C word!!  He has lung cancer too and has opted for nasty chemo. I would prefer good quality life not the prolonged life they feel obliged to do!! It is a really frustrating and upsetting time! We have had misdiagnosis and mistakes! I am trying to shut myself off now but that is not easy! I am always wrong whatever I do or say so don’t be hard on yourself or try too hard! 
I am wound up like a top! Everything is huge! I can’t get happy about Christmas! Everything is upsetting me and concentrating is difficult! My advice would be to step back for a little while! I have not found the hospital too helpful but I did contact my local hospice who have been great! I can’t go to the Macmillan centre because it is based next to the place where my first husband died and I am getting panic attacks there!!! That is not really understood by anyone there! 
Be kind to yourself and take some time for yourself! If he doesn’t want to talk leave it for now! The helpline number on here are good listeners and the nurse helpline for practical medical advice! Take care x

Dear Akela...thank you for responding and for the helpful advice about hospices. These are things you just don’t know about until you have to. I’ve managed to get him to call the hospital support nurse team because all these issues have got worse over the weekend, and now high heart rate too. But I’d guess that was stress.  Take care of yourself. 

Any little tit bits of information are useful! It is so hard as the loved one to get support and help! I feel very alone and frustrated! Only colleagues actually ask how I am! 
it is a lonely journey! I am lying here now, knowing I can not get to the next treatment as they have changed the day to a Friday! An impossible day to take off! Leaves him unwell on my days off! And therefore questions do not get properly answered!! I am thinking I will write a note to go with him next time!!! Because of his ptsd. And previous stroke he can not take in everything and because he looks ok thy rattle off a lot of info and he doesn’t take it in!!! I get fed up with telling them!!! 
it is frustrating but I don’t get why thy don’t look things up if they don’t know about them! What I was taught as a nurse! And still do!! You can’t know everything but you can find out!!!! 
I have searched for help!!! We have a hospice nurse assessment on Wednesday so hopefully we will be then on track! Hoping she can help with the pain control because he is not taking his pain killers right and the hospital nurse has confused him!! I am hoping he may listen to another professional because he won’t listen to me!!! Trouble is first nurse said she was ex army! So was he!!! No one else knows now!! Part of his ptsd and fixation with the army!!! I am not an army nurse! Personally I don’t rate their limited training!!! But nurse training is a whole can of worms!!! Lol! 
Take care of yourself and try and find a few minutes every day for yourself xxxx

Hi Akela. I wish I could think of something helpful to say to you. I hope the hospice nurse is helpful, as I hear very good things about their support.  Best wishes 

It is just helpful to know we are all having the same struggles and not alone! I hope when this is all over that I am able to maybe do some voluntary work and help others! 
xx

Hello JSBach

I am really sorry to hear about your struggles, we’ve been on the journey with my husband for 10 months now and the first three were the worst . waiting for the diagnosis and the treatment plan- you are just left alone to deal with everything...and my husband’s diagnosis came as a complete shock to us after a little accident at work. 

Akele was right though - try and contact your local Ellenor hospice - I had the same thought as you when we were advised the same- I almost had a panic attack when the nurse from the hospice turned up but I couldn’t be more wrong.

First of all she was the first person who had a proper chat with us about the situation and offered reassurance and support. Then she’s looked into all details like - are you in pain, are you eating ( Next day after her visit we’ve had a box of nutritional shakes delivered as my husband wasn’t eating) 

Most importantly they’ve referred him to councelling which made a huge difference to his emotional state.

Things got slightly easier ( nothing is easy here) for me once  we’ve had the full diagnosis and the treatment plan - at least I know who to call now  if any problems... 

try and look after yourself and give your husband some time and space... my husband refused to talk to me about it in the first weeks too, he just needed to process is first ...

Big hug

J. 

We had our hospice nurse visit today for assessment! The first proper nurse!!! She can do so much fro symptom control and sorting out his pain relief!! Already getting this stated properly! She will contact the cancer centre and ask them to improve communications both with my husbands meds which were a complete muddle and to inform me what is happening when I can’t get there!!! 
She is keeping an eye on nutrition and looking into care in the future, securing and planning ahead! 
she brought a file with her full of information about the service which could if necessary be 24 hour emergency help and a means of communication for me!!! She will at present visit fortnightly!! And review as necessary! She also said I had done an excellent job and understood my high standards! 
such a relief to find some reassurance, help and support! 
pleaee contact your local hospice they have made me feel like a weight had been lifted! Now to enjoy life and Christmas and I have a holiday next week where we can tick off some of his bucket list!

Hi there

i am so glad to hear that you’ve been offered some help and support - it makes such a huge difference.

have a wonderful hols 

best

That’s excellent. So pleased that the weight has been lifted for you, by someone whose expertise you feel you can trust, so the burden of responsibility doesn’t feel so crushing. I hear great things about hospice nurses.  M’s cancer is mega aggressive and we don’t have that long.  So we’ll meet them soon. 
Well done.