Mum’s Lung Cancer Diagnosis- week 1

Hi Rose1003 and welcome to the lung group, but I am so sorry to hear of your mums diagnoses.  Being so far from your parents whilst they are going through this, must be extremely stressful for you. This pandemic is certainly making it much more difficult to be able to be with our loved ones, when they really do need our support. My own father has a blood cancer which He is currently having treatment for, and myself with lung cancer, we are both shielding, so although we live close, we cannot spend time together, and I am desperate to see him and have a hug.

Your poor mum sounds like she has a lot of things going on at the moment. I hope there is some better news soon, and your mum can start on her treatment. I have put a link HERE  about personalised medicine and target therapy. You can also look at joining the Family-and-friends-forum where there are other people going through a similar situation as yourself, supporting a loved one.

Take care

Hi Chelle,

Thank you so much for coming back to me. I am so sorry to hear of your own diagnosis as well as your fathers. I think that we have gone in to a bit of overdrive with lockdown, thinking that not seeing loved ones is the new normal. In these situations though it really is so painful and all you do want to do is hug them and spend time together.

Thank you for sending over the links for the family and friends support as well as the target therapy. Although it’s awful to know there are other people going through the same thing, its a comfort to be able to reach out to others who will understand. 

Take care and thinking of you and your dad x

Hello Rose1003,

I was diagnosed with Stage IV NSCLC over 2hrs ago, and also have AF for which I have to take blood thinners and beta blockers. I am also EGFR positive and was fortunate to start treatment on a relatively new TKI drug called Tagrisso/Osimertinib (wasn't licensed by NICE at the time). Although it is still classed as palliative treatment it produced a shrinkage on the primary tumour in the first month, and I have been stable ever since (have my next 3 monthly scan next week). Treatments are improving all the time so there is plenty of room for optimism. The main thing at the moment is just to be there for her

Hi John Boy2,

Thank you so much for coming back to me. My mum is actually due to be put on the exact same drug as you, thank you so much for providing some optimism at the beginning of this journey.

I am so glad to hear that you are stable and doing okay. You are right, the main thing I can do is just remind her that I am there for her. 

Hi John Boy2,

I just wanted to thank you again for sharing your story with me. I have talked some things through with my family, especially my dad who is struggling to make sense of anything when it come to my mums diagnoses and treatment plan. Your post has really given us some optimism so thank you again from the bottom of my heart. 

I hope this encourages your mum, and gives heart to you, your dad, and the rest of her family and friends. I have tried to continue a "normal" life - I am still working (albeit from home the last 12 months) even though I will be 69 this year. Once your mum has her first scan and it shows positive results you will all feel much better. Your mum will then decide how she wants to play it - get back to some form of normality, or draw up a bucket list are two such approaches. Whatever she decides she will need to love and support of you all.

Stay strong

John

Hi Rose1003,

Having read your post we have so much in common:

After being a heavy smoker for 20+ years, my mum stopped smoking when my children were born 25 years ago.

My mum was diagnosed 3 weeks ago with metastatic lung adenocarcinoma in both lungs that has spread to her lymph nodes and adrenal glands.  She had 2.7l of fluid removed from her left lung last month but since then she has really deteriorated.  She has a appointment with the oncologist on 3rd March to discuss available treatments but they have said it is inoperable.

I live one hour's drive away from my parents and my dad isn't a 'natural born carer'.  But I'm having regular video chats with them and can see just how much they are struggling to accept and come to terms with the diagnosis.  I've always thought of my mum as a formidable force, she is the strongest woman I know and seeing her scared and frightened, and not able to go and see or hug her is unbearable.

I really feel your anxiety, I am with you too! 

We need to look after ourselves so that we can remain strong and fit to look after our parents. My 'me' tie is an hours walk each day with my two dogs, having the sun on your face and breathing in the fresh air in the peaceful surroundings really helps with my mindfullness and to clear my head so that I can come back and support mum (and dad) as best I can.

We have a challenging time ahead so wishing you and your mum all the very best.

xx 

Hi Rose 1003, I've been living with Stage 4 NSCLC since 2016 and am currently taking Osimertinib. I've found it much better in terms of side effects than other treatments I've had - but everyone is different. I can understand the wish/need to hug, the times make that so difficult. My daughter lives 2.5 hours drive away and regular FaceTime chats have really helped me and her to cope. We also have virtual baking sessions which are a great distraction as it is real life not COVID or cancer. Perhaps when she is out of hospital you will find some similar activity. I must admit knowing what she's doing every day is a real boost - even a text is meaningful.

Hope that helps.

Agnieska

Still Smiling