Hi - my husband was diagnosed recently with stage iv nsclc. The thing that seems the most lacking from NHS is hopefulness, kindness and caring. We have been left feeling there is no hope at all. Even though he feels really well with no treatment. So much so he is still considering not having any treatment as they seems to convey this sense of hopelessness. However, I got him to try some meditation and he felt a lot better. He said that he feels more happy and hopeful when he has nothing to do with the hospital. A difficult one. A young man. But how do you encourage someone to do something that makes his life and sense of hope a whole lot worse. Maybe quality of life is more important. ??
How do others remain hopeful and does this even seem important. It does to my husband.
cm
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cathmor
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Have you considered asking for a second opinion from a consultant at a different hospital? They probably won't offer anything very different treatment-wise, but your husband might just get on better with an alternative consultant / set of staff elsewhere.
I ended up going with the consultant who gave my second opinion just because they seemed much more sympathetic, though of course the basic chemo is probably the same as I would have got with the initial rather more egocentric consultant. Just a thought...
Thanks for that. I have suggested w try another team as I truly beleive that when you are with the right people it can make all the difference. It seems he has agreed. I think he got off to a bad start with the team. It can be hard to recover from on top of all the understandable trauma of the diagnosis. We got for his second ct scan results on monday - will ask for second opinion then.
thanks once again for the thought..
cm
Hi. Sorry to hear of your situation luckily for is mikes doctors and nurses have been amazing. I know everyone is different but mike started his treatment on Monday chemo made him very sick but he still went back Tuesday Wednesday to do it all again. Day off today but will be back tomorrow. What I think I'm trying to say it will be worth it in the end. New treatments becoming available all time. Please try keeping positive wishing you and your family a happy new year and good luck xx angie
Yes, I know it is important to remain hopeful and positive. I agree. I have suggested we try another hospital so that may make all the difference. I had suggested trying other things to help calm his fear and anxiety hoping that might help. However, I think he will need to change team otherwise he will not accept treatment. I think people need to feel cared about and supported to put up with the side effects etc..so lucky you have a team your husband and you feel supported by. Maybe that will make all the difference to my husband too...thanks again...
kind regards
cm
Hi Second opinion is always an option , you are entitled to one. My experience was similar . Came out of meetings feeling I was just a number to them. Lost hope for while. Then I realised I had to do a lot of the fight , questioning , and be assertive. Which is difficult when you are trying to understand what is happening to you. But it is worth while , it is easy to say but if your husband can feel some control over how the team and treatment are dealing with things. His spirits and hope will come. One of things that helped me , my husband encouraged me to see that it was my body and my illness and even though I was overwhelmed with the team's knowledge they may have the final say. That didn't mean I couldn't have a voice. My husband started off speaking on my behalf , sometimes I didn't know what he was going to say. And I would cringe , as he asked why, what , when. But this gave me the confidence to do it myself.There is no right and wrong , just what is best for you and your husband.We do the best we can with what we have.
Hi, Thanks for sharing your experience. I have said to my husband maybe not to focus on people who cannot help. or whom make him feel worse. We did ask a lot of questions but they shut everything down quick smart. Not horrible folk, just not very well placed to be supportive or kind. Bless they seem very hopeless themselves so it must be hard to convey that if you are struggling yourself. I tread a very careful line of trying to be supportive - typed up a 3 page a4 document of questions that my husband added to and amended as he felt was right. Handed it to the oncologist and went through it point by point. Correcting information they had written about him that was not accurate. Really outlining a 'holistic assessment' which is what they say they should offer but it seems rarely do. However, he is so traumatized that I have to be careful pushing for information that he doesn't want. Its his body and illness and not mine. He has such a problem with the team I am not sure where to go with it but seek a second opinion. I hope like you as he feels stronger he can start to advocate for himself. I also said that I am sure there are plenty of teams better placed to help. For example we have an unbelievable vet for our dogs so it is always possible to get the right help even when dealing with very difficult life circumstances. I am from a Buddhist tradition but my husband is not specifically so my feelings about things are very different. I have to respect his feelings and needs over mine but also get his they help and support 'he needs'. It sounds like your husband has been an amazing support to you. I hope I can help my husband in the right way. Other people keep telling me I should push him into treatment regardless of how he feels or the potential efficacy. However, my therapist says the opposite. That you have to support someone in their own wishes and that if I push him and it goes wrong I may live with terrible guilt. Its hard to tread an honest and compassionate path when dealing with our own fears and grief. I'm doing the best I can.
Thank you so much for taking the time to put these words out in the world for me to hear. It helps so much.
thanks for this. I have seen similar youtube videos but not this one. I will show to my husband. He was looking into to this unfortunately cannabis is illegal in the uk in any form. So would be a difficult treatment to access in the levels needed to have an impact. But i know he has looked into this quite carefully. An amazing story though...thanks for posting this to us.,,
But, my husband did go for his second CT scan 3 months after the first and it has shown no new tumor sites and while they said there was progression 'very small' they said they could not measure it or give us measurements as it was so small/too small?. A bit confusing? but considering he has had no conventional treatment at all that is , I suppose, good news at the moment. He is getting a second opinion on treatment in London and still considering his options. The second meeting was a bit better as he had a different oncologist who was less dismissive and just generally more open and kinder. She felt he had time to get the second opinion and look at some other options that may be available regarding treatment. So, it has given us time to gather our strength and stabilize his general health a bit. Obviously I know cancer can be a bit tricky but it is his decision at the end of the day...thanks again...
I did note in the video that this lady had needed some hope...it is so important.
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Just live day by day, Life is precious make the most of it, off to Sunshine States for 3 months.
10 months down the line
More advice please
