NCLC

Hi, I'm sorry to hear about your husband's diagnosis. My sister 58, was diagnosed at the end of January with nsc in her left lung, nodes and possibly central chest area. It felt like forever until she had her first treatment. Once it all kicked in though it has been a very good and organised process. Her first chemotherapy and immunotherapy was last week.

we spent the few weeks before treatment started as a time to get strong and ready for the treatment.

I hope your husband gets his treatment soon 

Thanks for replying. I hope ur sister is ok and thanks for the info. It’s such a worrying time and we r hoping to hear from the hospital soon. 

I would be very grateful if u could let me know how she reacts to the treatment so we can prepare ourselves. Many many thanks for responding it defo helps us a lot x

Hi Tessa, this is my first time here too.  I found out 3 weeks ago that I have small cell stage 4 lung cancer.  It was a bit of shock from a trapped nerve in my leg!  I am female 59 and fit also and had stopped smoking 3 years ago. Mine is in one lung, 5 nodes but has already masticised into my stomach, bones and probably elsewhere - they stopped testing to see now - same treatment anyway, it will only prolong my life.  Being new myself I don't know the answers to all you ask, but I thought I might be able to give you some really good pointers learned in the steepest learning curve in 3 weeks.  From what I have read and what you have said there is a real country wide divide on cancer treatment.  Luckily my local hospital is the top cancer hospital in the UK, so I have been so much luckier in having things happen very fast.  I also had no pain, except my leg which was the worse I ever experi8enced.The day they found the tumour on my spine next day i had emergency radiotherapy the next morning.  It was like a miracle, I am not in pain now.  However in one afternoon i went from walking to parcial use of a wheelchair.  Does your husband have an allocated Mcmillan Cancer Nurse? She is going to be invalluable.  She will be your direct link with the oncologist, any other consultant you may have, your GP, plus a whole host of other services you probaby wont know exist.  You don't actually say anything about recovery, remission, operaton - and clearly I dont want you to say anything that makes you uncomfortable, but the speed at which things happen will be impacted by the progression of the cancer - if its curable, fantastic they might be able to leave it a little.  If its not - my chemo starts 2 weeks from now - they have waited a little for my body to heal a bit from the battering of the testing, we all want to to start at the best place.  You need a mediator now - the macmillan are usually found in the hospital.  If you have one ring her tomorrow! Ask your questions, you should get a response with the answers very quickly.  Let me know how you get on, and I will check the site regular - for my own sanity too!!!! smiles.  As this information starts to process, you are going to find you have loads of questions - one word of caution - do not ask the question if you are not ready for the answer - they can be very blunt!  With Love and good thoughts for you both xxx Jilolo

I am new here to and find the online chats so helpful in how to support our loved ones.  My sister started feeling the effects 48 hours after her first treatment. severe fatigue at first and then nausea, loss of the tiny appetite she had. a bit of a sore mouth (someone on here had said to get bonjela ready).

It has been 8 days now and she has slowly been able to eat.

The nurses have been amazing and so helpful so ask anything and they said not to feel awful in silence.

Hi Sims, The oncologist has already told me mine is going to be tough and I will probably lose my hair after the first one Not that that matters - but i had it all cut and styled last week, Im havi8ng nice hair for 3 weeks.  And I have a will of steal - so I am gonna live forever! they can have their statistics but they dont know me yet! The bon jela  is on my list for tomorrow - Id been trying strepsils for my mouth - dont bother it doesnt work!  It wouod be really nice to talk to family members whose loved ones have it - so I can get their perspective of the difficulties they endure.  I know for sure its harder than for the sufferer - ive done it with elderley parents but not with cancer patients

Hi thanks for ur response. My husband had been told there’s no cure the treatment is to prolong his life. He has an apt on Monday with the radiotherapy consultant for treatment on his rib. He also has a dedicated nurse who we will call tomorrow. Thank u so much you’ve been so helpful x

Hi frantic10

I hope you don't mind me joining in your conversation... I read that you would appreciate family members views/thoughts. 

My take isn't the news any of you fighting cancer want to hear as my husband passed away from Lung cancer (age 54). But, If I can help answer any questions from anyone or simply be a listening ear that understands the struggles you and your loved ones are experiencing. Please feel free to ask.

My initial advice... Get a notebook and keep a diary of doctors, their instructions, side effects to chemo, other drugs, prescriptions, appointments. It could prove invaluable when you have so much information coming from various sources at a time when your head is mashed from the whole rollercoaster that is cancer.It is useful to have a written record of who you saw, when and what was said.

Re- sore mouth post chemo, there are specific mouthwashes available for chemo patients which can help or general mouth ulcer pastilles are quite good. 

Keep strong 

Mym x

Hiya Mym, it was so nice to get up through the night and have a reply.  I am often up through the night for an hour.  I would love for you to be my support for family, so I can understand a bit more of what is going on for them.  Firstly never feel gaurded about what you say to me - I am very much an optimist, but definately under no illusion of my diagnosis.  Without a series of unusual events I wouldn't even know! I am eternally greatful to have enough time to support and love my family.  Ours is an unusual situation.  My husband is on 24 hour oxygen, is also time limited cept for him its an unknown - as really it is is for us all.  Another blessing - we can work out what we want to do together.  3 times he has been in resuss in the last 6 months expected to die - not only is he still here, we got out yesterday just him and I for a coffee.  First time in 3 weeks what a buzz and even better I can do the things he can't and vice versa.  How lucky is all that!  Question:  Because of time constraints for his oxygen, my husband is unable to attend 90 per cent of my appointments with me. so its been my brother and sister in law who are extremely close to us both.  I decided to tell everyone straight away - I was able to do it without crying in a matter of fact way - all practicalities sorted then life as normal as possible.  I ask how they are all the time - and are met with were fine, but then thats what I say!  Theres been a few tears only twice and then we are out of it.  How do you think my brother and sister in law are really feeling and am I doing them a dis service by not allowing them freedom of expression?? Jilll xx

Hi Tess, please can you pass on this message for your husband - that pain in his rib it will probably be the worse thing he has ever felt - radiotherapy is really quick - just 10 mins - its painless and the effects of it for me were super fast, it has a really good success rate with our type of cancer.  I had no side effects cept straight after the feeling of 3 elephants sat on you - but thats no more comparable to what you are already feeling.  By next morning you are going to feel so much better! About 10 days in now for me - its wearing off - but I can go out, be distracted from it, no where near what it was.  You are probabloy going to need more than1 but it gives you back your mojo!!!!  All the luck in the world Tessas husband - and Tess watch out for your new man!!!!!  Jill xx