Family and friends

If a member of your family or a friend, or someone else you know is living with cancer, this group is the place to share your feelings and get support.

Husband seeing lung cancer surgeon tomorrow. I’m not coping!

Kernowp
Posted by

My husband is seeing the lung cancer surgeon tomorrow & was told to compile a list of questions. Is there anything that he needs to clarify? My head has gone to “brain fog”& my anxieties are off the scale . He’s had the worst cold for years this week & has been very low.  I’m in tears all the time so trying to think of questions to ask tomorrow just brings the severity home to me. Any suggestions would be very welcome. Helen 

r mondo
Posted by

Hi i was told i had lung and sec bone in end of Aug this year i am on my 2nd round of chemo,

There is so much i want to know but not sure where in here to post it, things like... how many chemos do you have,  why do they stop giving chemo? Or is the A down to the type of cancer.

The BODACH
Posted by

Hi Helen

Seeing any doctor can be a stressful experience not knowing what will be said or what the future holds and our minds starts to play tricks and we imagine all sorts of scenarios which pushes our anxiety levels sky high.

At the meeting tomorrow you should make sure that you have a few pens with you and a note pad to jot down the responses you get. At anytime you don't understand what has just been said stop the doctor and ask if he could repeat using different words after all we are not medically trained and can't be expected to know all the medical jargon. The reason for taking notes is very simply you will no doubt be bombarded with information and you can't be expected to remember everything,  it is amazing how many people sit in the cars or at home saying what did say about this or I wish I had asked about this and are left wondering.

I have found the following for you

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.lungcancer.org/find_information/publications/163-lung_cancer_101/277-questions_to_ask&ved=2ahUKEwipn9D67dflAhWhQhUIHVFTBJwQFjACegQIAhAB&usg=AOvVaw0O_rym0LBy1_-bSvcuL9hc&cshid=1573121513140

which I hope will be of help to you, obviously all the questions may not be applicable to your husband and you can cherry pick the ones you think you need to ask.

Good luck to your husband for tomorrow and at some time maybe you could come back here and let us know how you got on

Best wishes 

Ian

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Kernowp
Posted by

Thank you so much Ian, I really appreciate it. I’ll take a look at the link & will definitely take a notebook & pen. I put everything my husband gets given in a file for reference. Best wishes Helen

Kernowp
Posted by

Hi r mondo, I’m sorry that I can’t help with your question, it’s all new to me too. I just wanted to send you my best wishes & wish you good luck with your treatment. 

Akela2516
Posted by

My husband has lung cancer too! Try to listen to everything they say and make notes! Ask for time to digest it all! My husband was not given options, only told this is the treatment and side effects, sign here! I had read a lot as I am a nurse! 
As a result he was rushed, turned to drink and was too drunk to start his treatment! He didn’t really understand everything and needed time to think and digest it all as it is a huge shock! We now have to go back to the consultant! 
My advice would be to read what you can, make a list of questions and not to be rushed! It is a huge decision!!! 
good luck and take care xxx

Kernowp
Posted by

Hi Akela2516. So sorry that your husband also has lung cancer! You’re definitely right with it being a huge shock. We’re still trying to get our heads around it & feel as though we’re caught up in a parallel world. 

We’ve made a list of questions to ask the surgeon tomorrow so hopefully things may be a bit clearer then. 

My very best wishes to you. Good luck with the consultant hopefully everything works out better this time. Look after yourself & thank you again for replying xxx

Akela2516
Posted by

Hope all goes well for you today xxx

Manders01
Posted by

Good afternoon Helen.  Your post particularly caught me attention, and I feel for you. I am new to this site by only a few days. My husband also has recently (4 or 5 months), been diagnosed with Lung cancer Stage 4 with secondary brain tumour. I am 23yrs his junior and really struggling to cope with the severity of this situation. He has had a one off zapping of the brain tumour in the hope to control it, and on Monday starts his chemotherapy, we are told 5.5 hour session every 3 weeks for 4 sessions. We were not given options, just told this is what is going to happen. I didn't ask enough at the time of consultation but I have since spoken to the Specialist Nurse, and she has been fabulous. Explaining all my questions honestly and suggesting counselling and relaxation therapy for me as my husbands carer.  It is very much a roller coaster of emotions, but I hope you are offered as much information as is possible. I have read, read and re-read booklets and articles about my husbands situation and this site has given me  confidence to try to talk about it with others. You, like me, will have lots of questions for quite awhile, people here always seem to have time to listen. Good luck today, will be interested to see how you get on. Hugs. X

Mandie x

Akela2516
Posted by

Wow, your story is so similar! We too felt bull dozed! No options, just this is what you are going to do!!! I want my husband to have the remainder of his life with a quality of life even if shorter! Not to be a continuous round of cycles of treatment being ill and constantly in and out of hospital, visits and appointments!! I also read loads and was frowned on but both as someone with intelligence and an enquiring mind and a nurse with 35 years experience that is what I do! 
we have another appointment now! I am going to speak out too! Popular or not!!! 
Hope all goes well for you both xxx

Manders01
Posted by

Thankyou so much. I appreciate your reply. It doesn't matter if you are popular or not, speak up hun, I'm sure they want us to really it's just that nobody seems to have the time to explain everything I suppose, unless we ask. 

Let us know how you get on, good luck. Xx

Mandie x

Manders01
Posted by

How did you get on hun? Hope all is OK for you both. X

Mandie x

Gooders
Posted by

Hi Helen how your feeling is absolutely normal my husband was diagnosed with mesothelioma last October and I still sit with a pen and paper it’s the only way also your team of Macmillan nurses arelways there for you and I’ve found without their support I couldn’t have coped good luck thinking of you

Akela2516
Posted by

How did you get Macmillan nurses? We have had a social worker ring but she wasn’t slot of help really, just kept saying she wasn’t medical! 
I have used the helpline on the website and they were good but no other contact offered. I went to the hospice off my own back as I felt so unsupported! They are brilliant and we have an appointment on Tuesday with them! 
nothing offered via the hospital though and you really need direction of where to go! 

Kernowp
Posted by

Hi Thank you all for your kind thoughts & posts. I’m so sorry that there are so many people also going through this awful process.

The surgeon that we were supposed to see yesterday didn’t arrive, another surgeon from the same hospital took his place & immediately bombarded us with the offer of a drug trial! Not what we were expecting at all. He quoted so many statistics of survival, recovery etc etc that we were overwhelmed.

There were pros & cons, not least the chance of the drug being a placebo. For us the two biggest drawbacks were the treatments & follow ups would be at a hospital a lot further from our home. Secondly, the chemo/drug would be for 3 months prior to the op. We were concerned my husband would feel wiped out & facing the op & lengthy recovery would be tougher.

We are still discussing it as a family but think we’ll opt for the original plan of op to removed tumour in top lobe of right lung & area around plus lymph nodes in chest. Apparently it’s stage 3 (something or other,)& 5.5cm. Then chem/radio or whatever. It won’t be keyhole & the surgeon said he’d be in 5-10 days & need 3 months off work (not necessary as he’s retired!)

As his current lung function is 99% & he’s physically ok we think he’d have a higher chance of withstanding the operation now than after 3 rigorous months of chemo/drug.

We’re meeting with the lovely lung cancer nurse & someone from Macmillan on Thursday to chat about coping strategies etc. My husband has to have a head MRI after that meeting & if it’s gone to the brain it will all be back to square one!

Please keep thinking of us. I’ll be thinking of you all & hoping for positive outcomes.

best wishes to you all Helen