Good morning

Good morning - didn't know that this forum was on here until my sister found it. I'm a 48 year old man who was diagnosed with a rare form of lung cancer cancer just before lockdown. I've been on an experimental drug called 'alectinib' since April which seems to be working very well (thank god ans fingers crossed). Off fo a ct scan this week to see how far the cancer had spread as a baseline - this worries and scares me considerably!

 

Life has changed considerably and is now a merry go round of doctors, medication, tablets, temperature and worry and stress and anxiety. Although I was diagnosed in lockdown I'm keeping my fingers crossed that I'm well enough to continue my job in September as I'm a primary school teacher!

 

Life never feels like it will ever get back to normal - loss of sex drive, constant fear and worry, high anxiety, fear of death, pain and tiredness seem to all be my constant companions at the moment. The whole process is a scary one.

 

On top of this I have an aortic weakness - an aneurysm - which means surgery in the not to distant future - the idea of an operation terrifies me! So this is me and welcome to my life - was told to come use this site by my sister. Hope to find similar people or people that have worked through this anxiety that know how to help.

 

It's be good to get to chat to loads of you and share stories and hope altogether. Feeling scared and alone and unable to see the bigger picture - spending time worrying on how far things have spread, life and death and next steps! Please chat or help out out there. Many thanks xx

  • Hi jolldenn. 

    Welcome to the forum the club nobody wants to join. If you have a look at "stay strong" thares a lovely lady who's looking after her husband he has lung cancer, she's been on forum a few years now, so join her to chat or ask questions.

    She's only on now and again so don't worry if not replied to straight away. 

    Or if you go to top of your page thares a thick blue line if you open search you can put in what your looking for and list will pop up. 

    Good luck with your treatment and your future. 

    Best wishes 

    Billy 

  • Hi there and welcome ...

    I know it's like getting on the world's scariest rollercoaster... not knowing where it's going or when we can get off ... so your not alone ... there's many of us on that same ride with you .. 

    I had a grade 3 breast cancer 3 years ago... and total right masectomy...

    Yes I felt like you back then ... till my daughter in law said "no more what ifs... no more panicking... well live in the day and take every problem as and when it comes up.... well it's the best advice I've ever had ..

    Instead of looking into the future , I now wake up and think what can I do to make me smile today ... even one thing ... 

    Now I look at cancer like every day is a bonus ... I look at people and situations differently .. what is and isn't important now .. if I feel like having a cuss ... I do .. or cry ... or feel angry .. it's o.k .. as long as I get my boxing gloves back on and get back in the ring ... ready to kick cancers butt ...now I have my 18 year old granddaughter is battling acute myeloid leukaemia... and my wonderful niece has a cancer diagnoses... so wer all looking it in the eye and living in the day ..

    Remember no one is promised tomorrow.... it can take any one, cancer or healthy.... in the blink of an eye ... so by living today, you live every day ...weather that's a day / week / month / year or more ... don't waste a day .. as hard as it is .. cancer wants us to give up, and lay down and let it take control .. but don't let it ... stick two fingers up to it ... and take baby steps ... sending you a vertual hug.... Chrissie x

     

  • Thank you for this post - it's really scary the rollercoaster is going and I want to scream stop and let me off. I can't believe this has happened and everything is going so out of control - I feel that life is out of control and I want to scream stop.

     

    Getting slowly better than I was - it's now something that I need to live with - incurable but not terminal - but still an awful worry.

     

    thank you for your kind thoughts and friendly reply - now it's that next step - inside I'm screaming like a frightened five year old but outside I'm trying to get through it day by day. It scares me and terrifies me and so does the thought of an operation too - here we go!

  • Thank you for your quick reply - glad that there are so many kind people on here that I can talk to and share my deepest fears - I worry that I have not got a lot of time - they say it's incurable not terminal but it feels like it's stolen my plans and my future!

     

    i will look on here for that lady and chat to her too about her husband - things are scary at the moment. The cr scan will look at the spread - I hope it's not spread too far and that the tablets are helping it there too. My mind is whirling and my stomach churning. Thank you again for your reply.

  • Hi again didn't put much down about me thought I'd let you settle in first. 

    I've prostate Cancer gone to lymph nodes, spine, ribs pelvis and a lung was diagnosed Feb 2016 classed as palliative care on permanent hormone therapy and cemotherapy when neaded.

    Living normal life apart from appointment now and again. 

    I'm also official carer for my wife she has Alzheimers and parkinsons plus other problems. 

    Remember keep positive and keep fighting. 

    Billy 

  • I am the same. In the middle of a lovely worthwhile life. Three darling daughters aged 13 13 and 14. . Self employed music teacher, musician, give a lot to the world and enjoy a lot. Thought I had covid but it was recurrence of breast cancer I had in 2013. Which I was discharged from in 2019. I am in anguish a lot of the time, feel everything is being ripped away and I have spent a lot of the last few weeks crying and in terror.