Mum has advanced lung cancer

Sade - my wife has recently been diagnosed with Lung Cancer (stage 4) not curable, but treatment is with targeted chemo . My wife has Non Small Cell Lung Cancer. They discovered the cancer type from the bronchoscopy + enhanced biopsy tests. 
Anne started chemo on Aug3, she's had 3 sessions and this week there is no chemo. Chemo goes upto end of January 2024.
The consultant explained to us the drugs affect cells in your body that are in the process of dividing and growing, both normal healthy cells and cancerous ones. However, healthy cells are able to repair themselves, unlike cancer cells which do not recover.
I hate the "be strong" "think positive" statements outside people make, especially in texts. You will find who your true friends are with your Mum's cancer diagnosis. Some will go awol, or avoid you.
Your mum is in the best hands with the NHS and the Chemo ward where Anne goes is great, relaxed, nurses very attentive. There's nothing to be scared of at a chemo session.
What I found is my emotions were all over the place at first, I was in a state of shock for about 2 weeks. However, I'm positive we can get thru this, look after yourself Sade, get your good friends to support you, make sure you telephone them, keep them in the loop. 
There has been a lot of tears here as I have a daughter and two sons, but as a family we are together. You will find some people you wouldn't expect will give you warm support, for example work colleagues.
I'm sending you my love and let me know how its going with your Mum on here.

Hi Wrighty.

Thanks so much for your reply.  I am so sorry that you and your family also find yourselves in this situation.  I hope Anne is managing ok with her chemo and isn't experiencing too many side effects.  I'm hopeful Mum will find out soon what treatment they can offer so that we can get a bit more informed.   I find the limbo if not knowing really hard.  At least when you have something tangible you can face it head on, be it good or bad.  I just want to be able to support Mum through this.  We are lucky that we have a close family and supportive group of friends.  My Mum is only 60 so this is so hard to take.  Not that I imagine it being easy at any age.  But shes not long retired and is so fit and active.  Its come quite out of the blue.  They have said her health is surprisingly good apart from this and so that all helps I suppose.

At the moment I feel very much as you described.  I don't think it has properly hit me yet, I'm just on autopilot.  Unfortunately I live about 3 hours away so I cant just pop in and see her. Which us also hard.  I have also had the "you're so strong" "I'm sure she'll be ok" and "look for the positive" type of responses.  I find it really patronising and not helpful. But at the same time, prior to being her myself, I am sure it's the exact things I would say too as you don't know what to say.  I do have close friends who I can be brutally honest about my worries and how I feel and whp are also very honest in their answers which I find so much better.  Because I know no matter what, we'll have to get through this.

I'm trying to focus on a bit at a time, i.e, they have now said it is not curable but treatable.  So I'm holding onto that until they can give more info about the potential treatment.  Then I can move onto that part.  Thinking too far ahead scares me.

Its good Anne has a treatment plan for chemo in place and that its until ongoing until January.  I imagine that gives you a bit of hope and will help you get settled into this new "routine" for lack of a better phrase.

I hope your daughter and sons are doing ok.  I know from my perspective you feel so utterly helpless and its so hard to think of your parent as ill and vunerable.

Thanks again for your reply and please do let me know how things are going for you all.

Hi, I was in a similarly position that is diagnosed with stage 4 lung cancer, not curable but treatable in Dec 21. It came like a bolt out of the blue. At 66 I still worked and I volunteer in my spare time. Still do. There was no signs that I had cancer and would not have known other than I had an xray on my shoulder where tumour was discovered.  Investigations showed mets in my liver, spleen and spine. They discovered I could have targeted therapy in the form of a tablet every day and I also opted to take part in a trial instead of taking the standard tablet therapy.  20 months later I am still on the trial and apart from developing neuropathy in my feet and legs the cancer has shrunk by 70% in total and it remains stable. I have had some radiation on my spine in the last few weeks due to noticed progression in that area but confident that is now controlled according to scan results. I have promised myself that the cancer is not going to Rob me of the joy of the rest of my life.Once you know the direction of your treatment you will feel more at peace and reconcile to your new world of one day at a time. Every morning I wake up  and thank God for his Mercy and Blessing. Peace be with you both  

Hi Tina,

Thank you for your reply.  I am overwhelmed with your situation and the fact there can be light at the end of this tunnel and that there can be options.  I know it is not one solution fits all but hearing of others experiences does help ease my anxiety some.  I feel like my immediate response has been cancer... death.  I hope your treatment continues to be successful.  It is also encouraging to hear you still are able to volunteer and I assume live your life.  One of my worries is that my mum either gets very ill  very quickly or that she ends up almost housebound with no quality of life.  At the moment she is very tired after even something as simple as a food shop, so I do worry about that side of things too. 

Thanks again for taking the time to reply and I wish you all the best for your ongoing treatment

Take heart I forgot to mention for the first two months I too felt like I had a death sentence and I withdrew from everything looking inwards lnstead of outwards. I only became my newself once I had my treatment plan. Its thoughs between moments especially when scans and results come around i can find myself becoming emotionally became vulnerable again.

Thanks Tina.  I am trying to give my mum as much space as I can to sort everything out in her own mind as I don't want her to be additionally worrying about me too.  But at the same time, I am trying to make sure I'm as supportive as possible without suffocating her too much.  I think we are in the same position as you were initially.  Very scared as her cancer seems very aggressive and widespread and she is feeling quite a lot of pain and tiredness.  It is all worrying but we need to trust the professionals have a plan.  We just hope we find out what it is soon!  I am glad you felt better within yourself omce you had a treatment plan and I hope this will be the case for Mum too.  It is undrrstandle you feel more stressed and anxious around scans and new results etc but good that you are aware of your feelings and I hope this helps you manage them and continue to enjoy your life  

Hi Sade, my mum had also been diagnosed with stage 4 lung cancer, which is incurable but treatable. We are awaiting for radiotherapy, chemo and immunotherapy to start. It’s been a complete bolt out of the blue and a total shock, I’m not sure it’s fully sunk in yet! For us there were no signs, mum is really healthy, well so we thought, but you never know what’s going on in the inside.

There’s good days where I feel like I’m functioning as ‘normal’ and then hits me like a huge wave of emotion. Like you it felt like my world imploded over night. The feeling of confusion, anxious and worried is total expected, I feel all of these and sometimes all of them at once.

I’ve found these forums really helpful to be able to read others experiences. Happy to chat if you ever want, and sending you and your mum my best wishes x

Hi Positivity61,

Thanks for your message. I'm sorry to hear your family is also going through this.  The more I'm reading, it seems the hardest part is people are generally "well" with little symptoms until they are not and by that time things are quite bad.  

Like you I feel ok at times then its like it washes over me.  You know the phrase "your blood runs cold", well thats how it feels.  Like my whole body freezes.  I'm trying to not fall too far into those feelings and I am keeping busy.  I live a distance away from Mum, 3 hours, so I'm finding it really hard not being able to just call in and see her.  I ring every day but I find after the calls I am so, so upset.  Obviously I don't show this to Mum, our calls are "as normal" too.

Do you have a date for when your Mums treatment will start?  We are awaiting further tests on the cells to determine what treatment will be best and should have them within a fortnight which seems so far away ... The waiting is so hard! 

Thanks again for your message and I'll keep you and your family in my thoughts.  Please let me know how your Mum is getting on and best of luck for her treatment starting.

Hi Sade thank you for your kind comments. 
Anne and myself are both 66, and Anne spent 10 weeks in hospital because the Lung Cancer tumour blocked her esophagus. We had no idea cancer was responsible, Anne had no symptoms before this. It took 8 weeks for the PLAN to be worked out by a team of about 8 specialised medical professionals. Following a further scan after a stent was used to open the esophagus they discovered the cancer had spread, which was very hard to absorb for both of us. So from the 30th June the Chemo finally started on 3rd August.
Its fair to say the chemo has mowed out Anne, v tired, nausea, no appetite.  It takes about 4 days before she starts to feel like getting out of bed. None of the nausea medications have worked.
So whilst you feel better for the plan, it is very short lived.

You must take it a day at a time, do not look forward to end of chemo. My emotions are much better now that Anne is at home. I see her every day and am basically her carer. Your emotions will improve and talk to your best friends, the good ones will properly support you, especially being so upset after speaking with your Mum.

You say your Mum is now tired quite a lot, how has that developed?

I am hoping your mum gets here plan asap, but NHS is so slow I'm afraid.

Two of my family live in Ireland, and one in Sheffield. They take it in turns to visit me and Anne, when they can. Stay over a few days, and then they see how Anne is for themselves, not via a telephone call.

We have a good collective of people posting on your original post. I haven't time to reply to you all, but you are in my thoughts and I am sad that we have come together like this. I will read all the posts  especially TinaB24 as she is further down the treatment than Anne.

I'm sorry to hear Anne is having such a tough time with her chemo.  It is definetely a worry about how mum will cope during treatment as I imagine due to the spread and aggressive nature of it, they may well blast her initially.  I'm keen to know what their plan is, but also afraid of the reality of it if that makes sense.

You are absolutely right that the only way to face this is a day at a time.  The goalposts have changed frequently for us already with various things.

Its good your family visit when they can.  Its definetely harder when distance is involved.  I plan on getting home to see Mum as much as possible but a lot will depend on how she is feeling, coping etc.  I'll follow her lead.

How did Anne feel after having her stent in?  Did it make any difference for her?  Mum is having one done on Thursday to aid her breathing as I think she also has a blockage.

Thanks again for your replies.  It feels very isolating so is nice to chat to people in similar positions.