Just been diagnosed

Hi SoniaJ 

I am sorry to hear about your diagnoses. I do not have the same cancer as you, but I do know how stressful a diagnoses is, and the stress of waiting for appointments. 

Hopefully someone from the group will come along and share their experience soon. In the meantime, if you need someone to talk to you can phone the Macmillan helpline on 0808 808 00 00. They are available 7 days a week from 8am til 8pm and it's a free charge call. 

Take care 

Hi Chellesima, thank you, I’m all new to this so just figuring out how to use the site,  hope you are ok, it’s a rare type of cancer so not heard of often, 

will try calling the support team later as I’m at work, just constantly feeling drained and having no energy is killing me, I’m usually as people describe me a hyper person, bouncing around full of energy.  But now just completely different, kind of feels like Iv been hit by a bus. Xx

Having a rare cancer is tough, mine is also rare, and you struggle to find people to connect with. 

I am not surprised you are feeling that way, you are going through so much at the moment, and then trying to work as well.  Its not easy. The support team are very helpful, I am glad you are going to call them later. 

Take care x 

Hi Sonia

My husband was diagnosed 11 years ago, lung primary with liver mets.  He has had a number of different chemo treatments over the years and has been stable for the a while now. 

In our experience, one you have had the consultant appointment the wheels start to move and you will be given details of the operation and follow up treatment.  Usually a specialist nurse is allocated by the hospital and there are also specialist Macmillan nurses who are always so helpful and supportive.  Don't be afraid to reach out for help, Try to take it one day at a time, hope all goes well. x

Hi Karen, hope you are well. Iv had all the scans ct mri, nuclear medical scan, consultant had already told me that I’d be having the whipper surgery, he also said that it’s a major surgery but with me being only 37 I’m so scared. When is the specialist nurse allowcated? Iu have an appointment with my consultant on 29th of this month so hopefully I’ll know more then, 

my consultant is pretty good as all my appointments Iv had so far have all been fortnightly. 
will l you posted once I know more,

thank you  take care xx

If you don’t mind me asking, what type of cancer do you have?

yes I am struggling to connect with people with the same type but being patient. 

I need to work as need some form of income coming in, being a single mum to a 13 year old as well as all this, the toughest part of it is I’m struggling to tell her, she’s such a bright clever charming young lady that understands a lot. The last thing I want her to do is research on it and stress herself out and make herself ill. Xx

I have endometrial stromal sarcoma. I was first diagnosed 12 years ago, and then 7 years ago it came back in my lungs. I’m now incurable but treatable. If you click on my profile picture it will take you to my profile where you can read my journey so far. 
your daughter sounds amazing. My youngest was the same age when I got my lung diagnoses. My Macmillan nurse at the hospital arranged counselling for her, which was really good, and I spoke to her school and the welfare officer there was very good with her as well. Unfortunately children live their lives around the internet, so she probably will google. I would have a conversation with her to let her know that google is very informative but it is also very out dated where cancer and treatments are concerned, and to try not to google as it is always the worst case scenario. 

There are books and leaflets available regarding telling teenagers. I’ll have a look for you later on this morning and put some links up for you x 

I have some information links for you that I hope will help with talking about this with your daughter. These both have booklets you can download 

Children and young children 

when-your-parent-has-cancer 

And these are information sheets. 

talking-to-children-and-teenagers

Understanding children and teenagers' reactions - Macmillan Cancer Support

That’s brilliant, thank you so much xx