Hi all,
I’m new here. Not really sure where to start, to be honest. I’m 40 years old, never smoked, fit and healthy. I have a 9 month old son and 5 year old daughter. And on Wednesday my world fell apart.
I’ve been having fairly extreme shoulder pain since March. Because of Covid, I’ve never actually been able to see my doctor about this, and even my initial physiotherapy appointments were done over the phone rather than face-to-face. I basically got to my wits end, and ended up paying to see a private shoulder specialist… who sent me for an MRI on Tuesday. He called on Wednesday to say he needed to talk to me ASAP, and I needed to have my husband with me for the conversation. Obviously not good news! He said the MRI had revealed a mass on the apex of my lung (Pancoast tumour) and another in my shoulder blade. Apparently this is very rare! I’m just in total shock. Angry that it has taken 9 months to get to this point. Devastated for the impact on my family. I just keep thinking about my kids!
I know there is so much we don’t know yet. I’m being referred for a CT scan and bone scan… which could take 2 weeks to come through. That just feels like an eternity right now! I have constant nausea, and am totally unable to eat (has anyone else had this?) I’m hoping that this is psychosomatic, or shock, or anxiety related… But I just feel like I can’t really trust my body anymore, and my head keeps going to the darkest of places (more tumours…)
If anyone has any tips on how to keep afloat during this initial waiting time, I’d be really keen to hear them! How do you stay positive? And does anyone know of a way to speed things up? Would going private with better than NHS? I just don’t really know how it all fits together.
Sorry-I realise this is a bit of a brain dump rather than anything else. I’m just in that initial shock stage and struggling to know what to do! Hopefully my posts will get more positive going forward!!
xx
Hi and a very warm welcome to the online community
You sound like you've been through a great deal and it's no wonder that you feel shocked, angry and devastated. I think most of us who have been given a cancer diagnosis will recognise some if not all of those feelings.
As you know the online community is divided up into different support groups and I can see that you've already joined the lung cancer group which is a great place to ask questions, share experiences and get support.
When you're ready to post there just click on the link I've created which will take you straight there. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hello Ginifred,
So sorry to hear what you are going through. I don’t really think anyone would have the answer as to, how to get through the waiting.
My journey started in July, l have along the way been waiting for scan, mri, pet scan...... l did have to wait 3 months for a repeat chest scan, tumour was small they had to re-scan to see if it had grown. I have my operation next week.
The waiting is truly mental torture, if you go private remember most of their consultants work for the nhs, so still have to go through the nhs for a number of investigations. They know what kind of tumour you have so they could arrange move forward with the surgery.
I’m guessing by the age of your youngest you are on maternity leave, it should be the happiest time in your life, I think and hope that they get moving fast for the sake of your children.
I f you need any advice or just to chat feel free to msg me. Will be thinking about you 
