Recently diagnosed with adenosarcoma right lung tumour

FormerMember over 4 years ago

31 replies
70 subscribers
5393 views

Hello to all,

I just had my final diagnosis on Friday following a pet scan at Maidstone Hospital. I have been having test after test for three months and have not begun any treatment yet. I had a phone call yesterday to say that my chemo would be starting within a couple of weeks. I have not been able to tell anyone, as my daughter is in Thailand and has been trying to get home for over a year. I don't want to tell her on Facetime, so am waiting until I have no choice. If I tell anyone else, they may let it slip on Facebook, though I rarely use it myself. The only time I've cried is when my daughter said I must go to visit her in Thailand, if not this Christmas, then the next. I held it together until we had signed off, and then I I wondered if I would make it that far. I have a plan to tell her, but she's currently on an island and won't be heading back to her home in Chiang Mai for another three weeks. I have a friend who is a counsellor in Chiang Mai and I plan to ask him to be with her when he breaks the news. It's the kindest way I know. I suppose I also don't want people treating me any differently. I worry about that. I have a tumour in my right lung and palliative care is all they can do for me now. My son lives in Norfolk and I know if I tell him. he will probably freak out, throw his job up in the air and come rushing home, so I plan to tell his older sister first and then maybe we can tell him together. I live on my own and am getting anxious about how I will cope with the chemotherapy when the time comes. The nights are the hardest, as I find breathing difficult when I lie down. Thanks for reading. Sorry it's so long-winded. The other thing is that apart from my son and daughter, I have no other family, so there will be no one there to support them when I've gone.

I have never joined an online group before, so a bit nervous.

FormerMember over 4 years ago in reply to Popgate

Thank you. Just accepted. Eve x

FormerMember over 4 years ago in reply to ellie 73

Thank you, Ellie. You have all made me feel so encouraged today. x

FormerMember over 4 years ago in reply to FormerMember

Thank you. have found the caps on Etsy. Very pretty. x

ownedbystaffies over 4 years ago in reply to FormerMember

Hi ,

welcome to the forum. There is plenty of support, laughs etc on here, and plenty of advice when you want it.

Telling children ( adult or otherwise) is really hard, and added complications of distance and covid make it even harder. I think your idea of having a counsellor around when you tell your daughter is a good one if you can arrange it. Just be aware you are going to get a telling off from both your kids for not telling them sooner, as that is a common reaction. It is hard to hold a secret like yours and it is great you do have a good friend who can share it with you.

Re chemo - doesnt always turn out to be as awful as you anticipate so be realistic but dont panic about it. leek and potato soup sounds good.

Re hair - the headcoverings you can get these days are great and I have found that most people buy a wig and then after a few outings it sits on a wig stand, so dont go rushing into a purchase. You can ring the changes with headscarves etc, to match outfits and they are all comfortable. I have lost my hair twice now and glad to have it back for now - silver from mousey, but losing it again would be sad but not devastating.

Popgate over 4 years ago in reply to FormerMember

Hahaha trust you to bring that up!!!!!!! It's one of the many things I am famous for and sit knows a lot more of them hahaha it sounds so funny now but at the time it wasn't trying to run downstairs with a colander in my hand trying not to break my neck hopefully in time so I could get to the outside pipe and catch them before they went down the drain and lost forever!!!! the things we do to try and look normal hope this brings a smile to people xxxxxx

Flippen

Patmart over 4 years ago

Hi Redskelf

I don’t really have anything to add as everyone is already posting such good responses. Just wanted to say hello and wish you and your family all the very best!

You never really know what is going to happen with your hair in chemo. Mine has always been very thick and just thinned a bit. One benefit that I haven’t heard of before is that I no longer have to shave my legs or underarms!!!!!!!! Result

Take care

Patmart

Pet1968 over 3 years ago

Hi and welcome. The first time when diagnosed is the hardest. So much information and things to think about. But when you start treatment it will get better. I was told i had only 10 to 12 months to life. That was October 2015. Well i'm still here enjoying life.

Yes the part of telling your kids is hard. And both of them far away doesn't makes it easier.

We are here for you, for questions or just to listen...Pet

FormerMember over 3 years ago in reply to ellie 73

That's sad, Elliie, that you lost your support, and so recently, too. You are certainly going through testing times. Thank you for taking the time to welcome me.

FormerMember over 3 years ago in reply to ownedbystaffies

Thank you for your encouragement. I am somewhat reassured re chemo. It's the fear of the unknown, I guess. I am fully expecting the telling off, but I think after the initial reaction they will understand why I didn't want them worrying when they couldn't travel home. Bless you. x

FormerMember over 3 years ago in reply to Patmart

Well, not having to shave the legs will definitely be a positive. Thanks for that. My hair has become finer over the years, so have prepared myself to lose it now. Glad you managed to keep yours. The oncologist was the one who told me I would lose my hair. He didn't say 'might'. But, now I know I 'might not', thanks to you. x