Hi all,I am new here and am looking for advice/help.

[junesgirl]

My mum has recently been diagnosed with NSCLC Stage 4,spread to hip bone.She has had palliative radiotherapy 10 to lung 1 on hip and we are waiting to find out about a pill for chemo which she can have.I feel so guilty saying this but I am finding this so hard.My mum ,she is hoping the treatment will get rid of this nasty thing inside her.She should have been going on holiday next week but can't because of this but she's told the people she goes with she'll be going in March with them coz she will be better by then.I know how serious this is but I am not going to kill my mums dreams,I know she needs to be positive to have any chance of more time,however little that is.She has lost over a stone already and looks so poorly to me.I can't cry in front of her but I am dying inside too.I make jokes about getting her bum implants and some botox for her wrinkles etc..This is so unfair.

[Hidden]

Hi Junesgirl, I am so sorry to hear about your mum. You are right to stay positive around her as she will need all the support her family can give her. Nobody knows for certain how their treatment will go so your mum may well go on more holidays with her friends. Have you discussed this with her LCN because palliative treatment can continue for years and I am no expert buy if your mum is being offered a chemo pill to take then it could be a maintenance regime to keep things stable. There is a lot more information on the Roy Castle site that you can access.

Best wishes

Rab

[June13]

Hi, I lost my lovely mum 3 months ago to the beast that is lung cancer. From diagnosis to her last day with us was 1 year. It was a horrible roller coaster of treatment. Good and bad days. She was so brave and tried so hard to battle, knowing that the final outcome was not good.

I dedicated a lot of my time with her that year. Work and my husband and young family were an amazing support. I hope you have the support around you to enable sone special moments. I took her for appointments. Filed her nails. Had a movie sleep over night with her. Silly things which meant the world to both of us. It helps me now on low days to remember the good days. Mum managed a weekend in London with her sister from America. We treated them to a posh hotel and laid on extra treats there. That was 3 months before mum fell asleep. She had good and bad days between treatments. Towards the end she was on strong dose steroids. She loved cream cakes and sugary lattes. The smile on her face was so lovely to see. It was her little treat. Not sure it was great for her but you know if it made her smile it made everyone around her smile too.

Taking mum for walks in a wheelchair to the seaside was another special time I remember and have photos to recall. My two children were very close to their nanny and again like the cream cakes made her smile the beautiful smile I miss daily.

I found this chat room and also a face book page "I am the face of lung cancer", both really useful. Although every story is different you can relate to what these people are going through. I didn't put much on here but as you can see when I do my fingers just keep going. I find it is like a release and a way to almost journalise my journey.

One other thing I did from day one was keep a book for notes at appointments, so much is said I write down a lot to digest later on. I also used this as a diary of what mum was going through and my thoughts at different times during that year. Even in hospital during her last days writing by the light from the light in the corridor. Maybe it's a bit selfish I can see how many people are going through this awful journey , but us daughters seeing our mums getting helpless need a release too. Be strong and brave but also speak to your mum about what's going on how she feels. Most people will avoid asking her but to you she'll say how it is. The most beautiful thing my mum said during that year was "I wake up every morning and smile, just because I'm still here". She was so strong and I miss her dreadfully. Enjoy every moment you can with your mum. Give her hugs and hold her hand. Your'll both feel better on the rough days.

Thinking of you. Take care of you too.

Sorry I do ramble when I feel a need to respond in here. That's it for now.

June.

[Sarah75]

Hi Junesgirl. So sorry to hear about your mum. My dad was diagnosed in May this year with stage 4 NSCLC spread to pelvis , shoulder and lymph nodes ... I will never forget the day we were told the news, I couldn't breath!! My dad is still with us albeit not 100% the same man. Like your mam he lost a stone in weight and also lost muscle . He was found positive for EGFR TK so started taking Gefitinib in July, after 7 long weeks in hospital he came home in July and is doing well. I'm not sure if that is the same chemo drug your mam will be taking ? But it's working and giving my dad and us more time together . Dad even managed to come to Portugal on famiky holiday end of August , which I did not think would happen before the gefitinib started to work. Everyday is so precious and we are spending as much time as possible together as a family. I do my crying at home away from dad as try to keep his life as " normal" as possible but we have had some serious conversations about his cancer. So stay strong and think as positively as possible. I'm sending positive thoughts to you and your mam that the drug works and you can spend some precious time together. Xx

[LorraineD Partner Roy Castle]

Junesgirl

Thank you for your honest, hard and painful post. Quite understandably attention falls on the person with the lung cancer treatment, but watching someone you care for going through this is hard for you. You are doing the right thing, talking about your worries and fears. This is a good place to come to share your thoughts and feelings. June13, Rab and Sarah have already shared some useful suggestions.

It can be really difficult to know what to think when no one can give you definite answers to hard questions like "how long will she have" "how well will she be". But your mum's optimism will help her and if you can be supportive and encouraging that will be great. You can still worry and fear and there may be a time when your mum wants to talk about the darker "what ifs" and you are at least a little prepared for that.

Hopefully your mum has been assigned a Lung Cancer Nurse who will help support her. The Nurse can help you too, so do make contact and ask for advice if you need it. There are lots of hints and tips available from forum members and you can call our Freephone helpline if you want to talk things through,

your doing a good thing in caring for your mum. Hopefully you will get the support you need and see your mum feel better with her treatment,

do keep in touch and let us know if we can help,

best wishes

Lorraine

on behalf of the Information & Support team

0333 323 7200, option 2