I’m newly diagnosed with lung cancer May 2024. It’s large cell, nearly 5 cm in size. A spot in my other lung might also be cancer so ... Ive just started chemo after 10 weeks of tests to see if targeted therapies would be possible?Unfortunately I’m not suitable . I have an autoimmune desease limiting many other options for me.
What I’ve struggled with ( other than waiting which is torture ) is the communication or lack of it? . Trying to work out what’s being said to me ,having to read between the lines? I feel if I don’t ask the right question I come away without information? I can really only tell how bad things are by the suggestions of go enjoy myself do things that make me happy . Being told I’m complicated … and when i laughingly suggested should I be getting in with my bucket list ? Silence and smiles. It’s like no one wants to say how limited my time is but I’m definitely getting a sense that it is ? Am I being paranoid or is this opaque communication common?
Hi Coussant and a very warm welcome to the Community but sorry to hear about your diagnoses and the communication challenges you are dealing with.
Navigating the cancer journey can be such a stressful and challenging time. I have been on my incurable blood cancer for over 25 years and can recognise this issues you are facing. At the start I wasn’t e be told so had cancer!!!! But I developed the ability of sitting until I got very clear answers - no waffle….. we found the best person to get direct information from was our great CNS (Cancer Nurse Specialist) she was a Macmillan Sponsored Post but some hospitals don’t take up the funding.
But you may find it helpful to get support from people who have walked the ‘exact same' cancer journey and we can do this on this community.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Lung Cancer support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below…….
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community ((hugs))
Hi again Sharon (just had a look at your profile)…… I did not want to make any assumptions about your prognosis as you are not getting clear answers.
But if you feel it necessary, you may also want to consider our dedicated Living with incurable cancer - incurable patients only group. Please join the group but for everyone’s safety this will then have to be approved by the Macmillan Community Team so will not happen immediately.
As I said I have lived with and been treated for a very rare incurable blood cancer for over 25 years, yes there have been some significant challenges but I turn 69 in Nov and am still keeping ahead of the the big C.
All the very best ((hugs))
No just leave your post as this may help others coming to the reception desk and being able to navigate without putting up a post 
Great you have done your profile…… my profile is like War and Peace…… if you do look at it make a cuppa 
