New Diagnosis

Thank you!

Hi Cath A warm welcome to the Group no one wants to join but are always glad later they did! (Hope that makes sense)! Please don't Google any information as most of it is out of date and won't help! Remember the doctors don't know everything, No one does! I was given a prognosis of 5-7 months and not given the option of chemo or radiation as they don't work with my type of cancer. That was in 2013! I was asked if I wanted to join a trial for a new drug of course I jumped at it qbut failed the screening. My oncologist fought for me to get one of the combination of drugs on that trial. It worked and I'm here to tell the tale, well passed my sell by date! It's all in my Profile page where you will see it's not been all plain sailing! ( don't read it all, it's too long!) Just remember I'm on the roller coaster you are on, but I'm a few circles ahead! 

It's a great idea writing down what you want to ask, so you won't forget, I did that too! One word I no longer use is "terminal" in it's place I say "incurable" because I am. It sounds better too eh?  I didn't tell many people of my diagnosis because I thought I had enough to deal with. I think Norberry said about designating one friend, to keep everyone up to date, so you're not inundated with "how are you today" texts and it leaves you to concentrate on yourself and your very young family! Good luck and please let us know how you get on! Remember where there's life there's hope. Try to get through one day at a time. Much like we are all doing with this virus!

Take Care 

Hi Cath

And another welcome from a fellow incurable. It’s not the club any of us would have wanted to join but here we all are, looking out for each other and offering a virtual hug, shoulder to cry on and even having a laugh.

I am so very sorry to hear about your diagnosis. You are too young for this. It really must be like a bomb has gone off in your life - and there’s another one on a timer waiting to explode.

I’ve been living with incurable cancer for four years now. When I was first told the cancer had returned and that all my doctor could offer was palliative chemotherapy, I felt as though I was dying. My children were 12 and 15 and I spent a lot of time imagining them without me and feeling so very sad and angry.

I switched consultants and got myself under the care of an oncologist who is very research oriented. I’ve had all manner of treatment and here I am. These days I think of myself as living with cancer that’s treatable but not curable. I think it’s a phrase that carries hope and is an easier place to rest my head.

I’ve also learned to live with the cancer rather than die from it.  This was not an easy process and took both time and effort but it’s certainly been worth it.

From what you’ve written, it looks as though you have a number of immediate tasks at hand, the first being how to manage the response from your friends and how to talk to the children. I think you’ve had good advice already so I’ll just flag up the Macmillan info on talking to children. It might be helpful to read it. There are lots of books out there on this topic and I’d suggest it’s a good idea to put any reading and researching energy into getting this bit right.

https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/ebooks/talking-to-children-and-teenagers-when-an-adult-has-cancer

There is indeed a group for people with secondary breast cancer in this community. Have you joined it? If not, here’s a link:

https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/

There’s so much wisdom here in this group about how to do this living with cancer malarkey. I don’t want to overburden you now but I’d like to share one thing that really helps me. It’s a bit of an old fashioned notion and I dare say there are fancy words that someone more modern might use but it’s this: count your blessings. I can see so many in your post. I think it’s wonderful that your parents are so supportive for a start. You’re already at a research oriented hospital. And you’ve chosen a corker of a user name by adding the date to it. I really hope that you’ll be able to see the years ticking by as you too go past your sell by date.

With love and hugs

Hi Cath, I could have written your story. I’m 32 and was recently diagnosed with secondary breast cancer. I also have 2 young children: 6 and 2. I feel so awful for them, I haven’t even braved telling my 6 year old yet. I have no idea what to say. I went through a whole year of treatment last year and now she’s going to have to watch all my hair fall out and me feeling poorly all over again. It breaks my heart. 

Sorry that wasn’t a very uplifting message! Just wanted you to know you are not alone. I will say that Chemo is not as bad as you might think and your young age will be an advantage in a way. I think us young people tolerate it better. Of course you’re going to feel sick with worry, it would be weird if you didn’t. Honestly though you will get through it. Your kids will be your strength. I wish you all the best and just remember they are coming up with new treatments all the time.

Hi, I’m sorry you are having to go through this too. Did you ask about a prognosis before you started treatment? I’m thinking I might not ask at the moment. I’m hoping I will know which treatment they are going to put me on by the end of next week and then I think it will start pretty soon after. Did you have a port put in? We haven’t told the kids yet, we wanted to prolong it as much as possible without telling them. Does your diagnosis also mean you won’t have surgery? I also wondered if you have been looking at any other research? I have a juicer coming on Wednesday!! Sorry for all the questions!! It’s nice to speak to someone else in their thirties. I spoke to another girl our age last week so we are out there!

HI Cath

I am assuming from your posts that you are from Somerset!      I would just like to say that my oncology team in Somerset have been brilliant and very supportive.    Rest assured you will be in good hands.    Good luck with your treatment x

Hi  

I’m so, so sorry to meet you here. I can’t begin to imagine what it’s like to be dealing with such devastating news at such a young age and with a young family. Life can be very cruel.

I found other people’s reaction to the situation hard to deal with and vey draining. Having someone who can help to shield you from that is a good idea. No one can really say the right thing and that’s where this site becomes so important and a great source of support.

Things do become easier once there’s a plan and you will adjust to a new normal but it does take time.

As says there’s a big difference between living with cancer and dying of cancer.

This is overwhelming and you can only take in so much at a time. There are no shortcuts and there will be moments when your grief, fears and sadness run away with you. I think I would also feel very angry.

Have you seen the group specifically for people diagnosed with cancer at a young age? Sadly there will be others dealing with the issues close to your heart.

Wishing you the very best of luck with your treatment. It must also be so much worse in these unprecedented circumstances.

xx