Hello all
I am new to posting on this forum but have been reading many posts and digesting all the information and advice.
So I am 51 years old and was diagnosed with a Carcinoid lung tumour in January this year. It was a massive shock to the system especially as I have never smoked in my life or worked in harmful environments. I know that there is no answers as to why me - I am sure that is a question that most people with Cancer ask. I had a chest scan in 2015 and it was clear and I was then diagnosed with adult onset asthma in 2017. Year on year my asthma has got progressively worse until August last year when I became very poorly with chest infection that pretty much lasted for 6months! Dr just constantly gave me steroids and anti-biotics time and time again without any further investigations, despite walk in centre sending letter and advising a chest x-ray!
Just before Xmas I had to call out the paramedics as I was having severe stabbing pains in my right lung. They also believed it was an infection and possibly fluid on the lung. They advised getting Dr to refer for chest x-ray... I did this on 20th December - by 22nd December I was in for x-ray. I then received a phone-call on 27th from said Dr to advise 'Im very sorry they have found a lump'... Things then moved very quickly... CT Scan 29/12 - consultant appt on 9/1... at which point I was told lung cancer or tumour! There is nothing that prepares you for that shocking news. Numerous tests and website research followed whilst I waited for answers which came on 26/1.
I was then referred for Surgery. A rigid bronchoscopy was carried out to debulk the tumour and ascertain where is originated to determine what lobes needed to be removed as it had completely cut off my lower lobe (which was deflated and infected) due to its positioning. With the tumour debulked it was the first time in years that I had been able to breathe relatively well. Following on from this I had a bilobectomy.
So now I am at home recovering and all of this is now hitting home pretty hard.... My treatment was fast but follow up care has been lacking sadly - its been a whirlwind 3 months. I was discharged from Hospital on day 3 with minimal information of what to expect. The scar is healing and I am getting out and about walking but I very much don't feel like myself anymore - the majority of people around me think I should be ecstatic that its gone and just be back to normal... I find myself questioning why I am not? Part of me feels like I won't ever be back to normal. It takes some getting use to having restricted lung function but I think the biggest thing I am currently struggling with is the tiredness - it doesn't matter how much sleep I get at night I am still exhausted when I wake up in the morning! And the nerve tingling is horrible - I have been told this will settle in time.
How have others found recovery and fatigue please - is there anything I can do to help it all along.
Thank you for taking the time to listen to me :) x
Hello Pixiemoo I have just noticed your post has gone unanswered. I have just read through your story and wow you have been through the mill with this. I have Prostate cancer and we have a common enemy - fatigue. I find the only way to fight this is exercise - even though I am sometimes reluctant to do any!!
By me replying to your post it will be "bumped" back to the top of the forum and I hope noticed by other Community members and I do hope you receive some further replies.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Thank you Brian for your kind reply. I'm sorry your suffering this horrible fatigue situation also. I have been trying to get put but sadly the weather keeps deciding to put a stop to my walks
I'm hoping to start swimming soon 
thank you again take care Lorraine 
Hello jo (Gwengirl ) . A warm welcome to the online Community - although I am so sorry to find you here - as you will see from my post above - I have a different cancer but I hang around in all parts of the Community. To join this group - just click on this link
Once the page opens up, just click on join on the black banner at the bottom of the page. You can then introduce yourself in the "New Here - Say Hello" section.
I did read you said it was a
lonely unknown journey.
are you aware of our "Buddy Scheme" where we can allocate you with a telephone Buddy who will give you a call once a week - Link here-
I hope you have great results at your post opp scan and if I can do anything to help please don't hesitate to contact me.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
HI Jo
Thank you for your reply x I can totally understand how you are feeling... the nerve pain is awful isn't it - my whole right side is so sensitive and just feels like pins and needles all the time 
I rang Macmillan a couple of weeks ago and that was the best thing I've done as they were able to put me in touch with bupa for 4 free counselling sessions which I am hoping are going to help me come to terms with all this... I so just want my life and me back after all this... I want to start living life more fully.
It is a lovely journey and I think because most people don't know much about these tumours and they just assume they are not as bad as lung cancer (which maybe they are not) but when you are going through diagnosis and treatment it feels bad! And the after effects of the operation certainly knock you.
Keep smiling Jo - you've got this x maybe we just need to be kinder to ourselves and just give it all a bit more time I truly hope you start to feel more like yourself very soon x
Take care
Lorraine
Lonely journey .... not lovely journey ♀️
Hello Lorraine (Pixiemoo )
If you need to edit a post (I do all the time!!) - Just click on "more" at the bottom of the post and then "edit".
Thanks also for mentioning the BUPA Counselling and the Support line - BUPA Counselling for anyone with cancer and the support line for anyone with or affected by cancer.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hiya. Yes they went through in my back. So yes hard to reach. Thank you for the tip re long handled thing for cream. Will get one !! And hanks again. Take care 
