November is Lung Cancer Awareness Month. In this Community News Blog we will be catching up with the lung cancer forum on the Community.
The lung cancer forum, which you can find here is a friendly online support group for anyone with lung cancer, or for anyone supporting a loved one with lung cancer.
It’s a place where you can share your thoughts, worries and anything else you might be going through with people who have been there themselves.
Read the blog to find out what support has been shared in our lung cancer support community recently.
“I have only been a member here for just over a week but find it really helpful.” Community member, lung cancer forum
Thinking of joining the Community for support?
When you or your family member has been diagnosed, it can be a whirlwind of emotion. You can talk to Community members who have been there themselves, like this member from the lung cancer forum.
"The first diagnosis is an emotional and sad place to be , the shock and fear are beyond description… I’m newly diagnosed but have just got my treatment plan… I’ve found this group so supportive during the initial diagnostics but also the Macmillan Support Line are amazing…. Reach out when you’re ready for support because it’s out there for you" Community member, lung cancer forum
"I’m waking up on the first morning after my wife was diagnosed with stage 4 lung cancer and feeling very emotional, daunted but what lies ahead for me, my wife and my two children. I'm hoping there is lots of support and kindness out there as I know I will need it." Community member, lung cancer forum
Even when you’re doing your best to stay positive, you might have a lot of questions you would like answering
“After 6 months of tests, I was diagnosed with lung cancer last week…I am very positive about the whole thing and have a 'what will be,will be ' attitude but I would like to hear from anyone who has been in the same or similar position to me. I would like to be aware of the best and worst scenario, so please don't hold back. I want as much info as possible, positive and negative” Community member, lung cancer forum
Although others might not be going through exactly the same diagnosis and treatment as you, there is till lots of support to be found, as this member describes,
"It’s difficult to advise as everyone, even those with exactly the same diagnosis as yours, will likely receive slightly different treatments along the way. There is no sugar coating things, the trip will be an emotional and physical rollercoaster, but if you can remain mentally strong that will go a long way during your route out of this.
Do not be afraid to seek help where it is offered or available. Everyone here is on the same journey and has experienced what you're going through so dont be shy in leaning on us if you need to, we're here to help and support you however we can." Community member, lung cancer forum
"...it’s a difficult road ahead, but you have friends here who will give you the support you need. We are a bit of a mad friendly bunch but it’s a safe place to get your thoughts out and get the answer you need. There is a lot of information coming your way so make sure you take notes, stay strong treatment has come a long way. If you want to read a bit about my journey so just tap on my name icon and it will take you to my profile. If you need help just message there is always someone in the forum to help, you are not alone." Community member, lung cancer forum
Coping through diagnosis
"Am I brave enough ? Strong enough? I genuinely don’t know and that makes me sad and mad ! How did you all handle the big reveal?" Community member, lung cancer forum
When you receive your diagnosis, it can be a shock, even if you were expecting it. There might be a lot of information to take in and issues that will cause you uncertainty. Talking to other members in the lung cancer forums can help you get through this.
"I came away from my diagnosis meeting with my brain all over the place, I went home cried laughed shouted and cried some more, only then did I sit down and think about what I had been told. I got a piece of paper and wrote down what I could remember and then I wrote a list of what I felt I need to ask and then I rang my specialist nurse and went through it all. At my diagnosis meeting I had signed up to my treatment plan my nurse went through all of this again with me she even said that I didn’t have to go through with the plan if I didn’t want to everything was up to me, she recommended I got some counselling even sorted this out for me and she also said I could anytime and ask about anything, and believe me I did and true to her word she was there.
I also joined this site which was the best thing I did people on here have been great, when they say they understand you know they are genuine because they’ve had a similar diagnosis so you know the advice is coming from a good place." Community member, lung cancer forum
Going through treatment and talking to your healthcare team
“Morning everyone , I’m about to embark on 6 weeks of combined chemo/ radiotherapy so looking for any helpful tips for both treatments … what to wear , what to take with me to chemo , skin car … do you take food with you to chemo? I’m there 6 hrs every Tuesday so a long day - … packing my kindle , knitting , mags etc” Community member, lung cancer forum
If you’re about to start treatment, it might be helpful to find hints and tips from other members. It can be really daunting starting treatment and reassuring to hear from people who have been through it themselves. You might want to know what side effects to expect, or what to take with you for your lung cancer treatment.
“it’s a good idea to take some food with you, my first chemotherapy / immunotherapy treatment took 10 hours believe me I wasn’t expecting that, fortunately I had packed myself lots of nice goodies, a couple of sandwiches and lots of snack foods crisps biscuits ect, I look at it that if there are any holdups you have supplies, if you don’t need them then you can take them home and eat later. Make sure you tablet and phone are charged I also took my charger with me.” Community member, lung cancer forum
Members in the lung cancer forum are great at sharing tips with each other.
“One tip I have which I expect many of you do already is record your discussions with your MDT and consultants etc. I use my phone start a video and put my phone on desk I always ask if they mind.” Community member, lung cancer forum
"I asked my oncologist whether i could record the consult. He didn’t have a problem with it. I’ve listened to it 3 or 4 times now and each time I listen, I hear and learn a bit more." Community member, lung cancer forum
Practical issues
“Cancer will not define me so why should my employer think it’s ok to to treat me so badly” Community member, lung cancer forum
“We are going to apply for PIP using the special rules /DS1500 form. My understanding is that we need to call the DWP to start the process. Have any of you here done this recently and if so, do you know what they ask?" Community member, lung cancer forum
You might be navigating a return to work, or investigating financial support if you’re unable to work following treatment. The Community is here to talk through practical issues in addition to finding emotional support. If you'd like to read more about these member's questions, you can click on the link at the end of each quote.
Your feelings when you have cancer
"I wanted to vent too about the things people seem to think it’s ok to say. One person actually said she was glad it was me and not her dealing with chemo because I’m much braver and she couldn’t cope with losing her hair etc. Honestly love, you’re glad it’s me ??? Trust me I’m not brave … I’ve no blumming option and I’m scared …. Or the others who head tilt slightly then say “yes , but did you smoke ?” WTF! No I didn’t but why do you seem to be inferring that if I did , it somehow makes this tumour my fault ?? It makes me so blumming angry … I wouldn’t dream of asking anyone that question in that way …. I guess people don’t see nice pink fluffy things for lung cancer… ranty rant over!" Community member, lung cancer forum
"It’s the people who don’t really know much that presume that lung cancer is a smokers illness only. If they’d educate themselves before they spoke then they’d know actually someone who has never smoked can also get it. It’s so hurtful and damaging! Even if you did smoke it gives them no right to question you, or anyone else for that matter. Cancer is cancer, NO ONE chooses it. I know it’s much easier said than done but ignore them" Community member, lung cancer forum
You might have things you don't want to discuss with friends and family. Our members can help you feel less alone, whatever you might be going through.
It can make a big difference to be able to connect with people who understand. If you're new to the Community, or just haven't posted yet, why not join in with the conversations today? You can find our lung cancer forum here.
“I would first like to say a big thank you to everyone who posts here, i have been reading your stories as i recover from my recent surgery, and its a big comfort to learn we are not unique in our diagnosis, and that others have gone through this, and can provide assurances when we "wobble". I have taken great strength in reading the posts on this forum, and shall continue to do so.
Be brave, be strong, be blessed." Community member, lung cancer forum
Find our lung cancer forum here. If you're supporting a loved one with lung cancer, you can also find support from our family and friends forum in the Community. We also have a dedicated space for carers only, a safe and supportive space for caregivers to share their worries and emotions.
If you need further help finding the right support, please do reach out to our Support Line. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
Looking for further information from Macmillan about lung cancer?
Find our recent Cancer Information blog 'Lung cancer signs, symptoms and treatments' here.
You can find our online information and support pages about lung cancer here.
Our booklet ‘Understanding Lung Cancer’ is available for download or order here.
You can also find further support from charities specialising in lung cancer support in the links below.
Roy Castle Lung Cancer Foundation
We hope you've found this blog helpful in outlining the support available to people affected by lung cancer from the Online Community, in addition to linking you to other useful resources from Macmillan and other organisations.
We'd welcome your comments and feedback in the comments section below, or you can contact the Community team privately by email at community@macmillan.org.uk
We'd also love to hear from you if there's a subject you'd like to see in a future Community News Blog.
