New to the forum

[Nairnite]

I just wanted to introduce myself, I'm a 51 year old female who is little nervous, as have never participated in forums before but over the past 6 weeks, I've undergone lots of tests, received lots of information from Doctors and undergone my 1st round of chemotherapy for small cell lung cancer. It's been a daunting rollercoaster of a ride both physically and emotionally and thought it might be helpful to connect with people who have gone or are going through similar experiences so that we can share information and provide support for each other. It's scary when you receive a diagnosis and are faced with the realisation that time is limited but I'm trying to stay as positive as I can, do as much as I can when I feel up to it and just get through the times when I feel rotten. My friends have been invaluable to me at offering support as I have no immediate family and I feel blessed they are there for me but to connect to others who have first hand experience of lung cancer would be welcomed.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Nairnite

Welcome to the forum where we are sure you will receive plenty of support and encouragement.

So sorry to hear you have lung cancer and hope your treatment goes well. It can be quite isolating having cancer and it is good to connect with others who know exactly what you are going through.

You may or may not have seen our booklet on Small cell lung cancer and here is the direct link to this: roycastle.org/app/uploads/2...

This is also our booklet on chemotherapy: roycastle.org/app/uploads/2...

We have online support groups via zoom and if you are interested in registering for these you can do so through this link: roycastle.org/help-and-supp...

We offer a one off grant of up to £150 for anyone with lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All the best

The Roy Castle Support Team

[JanetteR57]

Welcome to the forum. It's such a daunting time at the start when everything is so strange and scary. It was 2 weeks after my 52nd birthday when I went to A&E and a chest x-ray showed a lesion on my left lung and a few months after that when I was diagnosed with non small cell lung cancer (having had the tumour and half left lung removed by open surgery).

That was in January 2011 and there were no forums like this and information was pretty limited and doom laden - so like you, I was frightened and some like the solicitor when I decided to finally sort out a will, encouraged (persuaded) me to also set up a power of attorney in case things didn't work out well. It all seemed very one way to me - but thankfully I got through the treatment and returned to work.

I became involved in lung cancer research and the treatment landscape, research done and answers found that there are many types of lung cancer have all changed since that time.

Small cell is a different condition and described and treated differently from non small cell but you don't need to know all there is to become a pseudo scientist, just keep your mind open, ask questions and write them down before appointments.

The Roy castle booklet on small cell lung cancer and other information on their website about treatments, tests, and living with aspects are all incredibly useful and regularly updated.

I found keeping myself distracted, busy and helping others (I'm also self employed and continued working throughout) stopped me dwelling on the what if - and allowed me to deal with each appointment or process logically and ask the options for 'what is'.... but we're all different. It's good that you have some support as there can be down times, dark thoughts especially at night but breathing exercises and keeping active also helped me. Just know you're not alone, others have experienced where you are now and we're all here to help others who find themselves in this often scary and unknown position. thinking of you.

[Nairnite in reply to JanetteR57]

Hello JanetteR57, thank you for responding to my post, it's nice to hear from someone who understands how scary it can be at point of diagnosis and I'm pleased to hear that you got through treatment and went back to work. I did start down the road of becoming a pseudo scientist but got bogged down with the information so decided it probably wasn't a good idea and was better to deal with things as and when they occurred. Thanks for the advice about keeping an open mind and writing questions down before appointments, I always find appointments quite anxiety provoking and forget to ask what it is I want to know. The hospital was kind enough to supply me with the Roy Castle booklet on small cell lung cancer and I've had a quick look on the Roy Castle Website, I could see there is lots of information so am working my way through finding out as and when I feel well enough to deal with it. The chemo has hit me like a freight train so am still trying to deal with that at the moment but day by day I begin to process all the information given to me and am trying to take moments of joy as and when I can. I shall bare in mind that keeping active and helping others helps and hope that being part of this forum will help me with that. Although I have accepted that my old life is no more, I'm still in the process of building a new one that can accommodate treatment but am also aware that not everything in my life has to be about cancer and treatment, which it seems to have been these past 6 weeks, there needs to be other things as well, so the search is on. Thank you for letting me know I'm not alone and that there is hope for a future, will keep in touch when I am able 😀

[JanetteR57]

glad if it helped - as you say, so important to put other things into your life or it can become dominated/all consuming and mess with your mental health... plan things for the future - maybe order some spring bulbs/flower seeds for the spring or xmas flowering - so there's something cheerful even if for indoors/windowbox if you have no outdoor space, do you have hobbies? maybe time to start some new ones - many people craft - mindful colouring, embroidery, watercolours occupy many - keeping active if you can is important - doesn't have to be jogging/joining a gym- things like yoga, pilates and walking all good... but know your chemotherapy will knock you about so it's important to recognise not every day will be as bad as another.... some find sorting out photos prompts them to reconnect with old friends or simply arrange them into albums, or write letters to people or singing/music? visiting galleries, reading books, watching series/films that you always meant to can all be rewarding.... and allow time to simply be..... every minute/hour/day doesn't need filling - time to savour a cuppa or enjoy a nice meal or cake or something.... as you say, it can be quite mind boggling - but little by little terminology, aspects will become more familiar - even meeting the same patients in the chemo suite or the staff can bring a familiar routine or opportunity to make new connections and talk about anything not only what you're sharing in terms of the experience - but hopes, dreams, reminiscing.... I've made some wonderful friends and connections that I would never have known if not for my diagnosis and involvement - as you say, even if it's a different life, it's all part of life.... take care...

[Nairnite in reply to JanetteR57]

Thanks for you're useful tips at distracting and ways to enjoy the times when I'm feeling not too bad. I'm heading for my second round of chemotherapy plus immunotherapy today, so will try putting in some of these things and hopefully they will help me deal with the side effects, one day at a time. Take care.

[mishamilo53]

hello nairnite . Only just seen this post , how are you doing ?