Newly diagnosed

Hi GmaUber

Just to reassure you, no you are not falling apart. The response time between appointments/steps is normal as I understand it. Mine was similar. The meeting of the experts to determine the treatment options usually occur once a week before they send you an appointment to discuss options with the Oncologist.

Waiting in between is the pits. This phase is always the hardest. You can't help the way you feel. We've all been there. This takes time we jump from one limbo room to another until you finally get an answer/approach. 

Similar to you I was diagnosed with IDC too but it wasn't stage 2. I also have various medical conditions but I am still getting treated.

The people on this forum are great and their experience & support will help you any advice they can offer as well the nurse that will be assigned to you.

Sending you lots of hugs!

Sledge x

Thank you so much for your reply, I cried when I got it.   It’s just that other than two friends who are both nurses who understand and have been there for me so far.   It’s the only two normal conversations I’ve had in the circumstances, sympathetic, or is empathetic the right word?   

I have lots of friends around my area and all of them have sent texts, phone calls, popped to the house to see me and it’s been great to know that I have this support of everyone.    I am a widow and live on my own.    However, what I’m finding is that people say the silliest things, I really don’t mind when people tell me I have a lot to be thankful for in the sense that it’s Stage 1, and level 2.   The cancer wasn’t found in the lymph nodes so therefore hasn’t spread.   But most people tend to not say that, they say, oh it’s only level one, a lumpectomy should take care it that and minimal treatment after.   I’ll be fine.     I know people that say things along these lines are not meaning to be irritating but nevertheless I’m finding the more I hear that thought said in a few different variations the more irritated I get.   

I said to one very good friend who was saying exactly that and also comparing me to her husbands prostate cancer for which he didn’t have surgery, just radiation therapy and he was just fine.      I told her that a cancer diagnosis, whatever the stage or grade, whatever the treatment ends up being I’m sure it isn’t going to be pleasant.   It’s not something I’m looking forward to and I am feeling quite anxious.     It didn’t make any difference she still keeps on saying I should be positive and it’s only very small.    Etc etc.     This past few days I’ve stayed home and am avoiding people, I text my two nurse friends and they text me and I’m finding that I don’t want to be around anyone else.     At the end of this I may have no friends left.   

I am feeling quite depressed and alone and getting your message was just what I needed, someone who has been on this journey and understands.     I have a lung condition and cirrhosis of the liver both caused by Methotrexate which I took for years as a treatment for severe Psoriasis.   The damage has been done now so they have to decide whether I can have anesthetic and chemo is probably out as my liver wouldn’t take it.       I guess I just want to know so I can deal with it.   High Risk clinics are only held on Thursdays so it’s a few more days yet and I don’t even know if I have an appointment yet, they said they would phone with one if one were available.    

Thank you so much, I’m sorry if I sound like I’m ranting but I needed to get that off my chest.   I think they should publish more information what not to say when someone gets an awful diagnosis of any kind and also when you lose a partner, lots of people say similar things, meaning well but saying things that were quite hurtful.    Thanks for listening xx

GmaUber, I know what you mean. I decided early on that I’d only share details with the professionals and my husband. I chose a very small group of people to tell I had cancer but with no other details, making it clear I wasn’t prepared for cross examination.

Reactions varied from the best “how can I help?”, “what would you like to talk about?” Through the accusatory “Hmm.. you look well!” delivered in a tone that suggested I was either faking illness or I had no right to look half way decent.

The worst was the friend who said “you've got to tell me all the details or else I can’t help you. And I don’t want the next call I get to be telling me the worst news. If you don’t tell me I’ll call your partner and ask him.”

To be fair I don’t think people realise that sometimes I just want to eat cake and talk about cat videos!

It’s so good to talk to people who are on the same journey as you are.   It’s scary and I think totally the worst thing is not knowing.    I just want to know what treatment etc and then I can process it and at least you know what you’re dealing with.    Right now I don’t know and it is driving me insane.     

I must say since coming on here today I have felt much better actually.    When someone is going through the same thing it helps a lot to talk.     

My children all know, they are grown up it’s my grandchildren who don’t know as much yet.  My granddaughter starts her GCSE’s on Monday and we’ve decided just to tell her the basics like I’ve got cancer but it’s treatable and can be cured.    

Your last friend’s comment was terrible.   People say the most stupid things sometimes.     You said that some of this happened early on, so can I assume you’re part way or all the way through this treatment etc now?         I hope you are through it all and OK now.     Thank you for replying to me.   It means a lot. 

We’re all here to share the bad, the awful, the good and even, sometimes, the funny. 

I was diagnosed in January last year. Treatment is ongoing. I'm a real worrier with a lifetime’s experience of anxiety and depression yet I’ve been remarkably strong and composed most of the time. That has been a real surprise to me but (apparently) not to those who know me  

I’m religious so maybe that helps. I hold everyone here in my prayers. 

Hi GmaUber 

Ranting is allowed. Listening is what we do. This is what we are here for. It helps to articulate how you feel or think that you can't say because is likely to be offended and you don't really want to upset anyone. The reality is they don't know what you are going through. Anything they say you just have to pass you by. Grit your teeth, smile and think of something ludicrous that makes you smile. I tend to have a huge cuddly toy rabbit that my son left in his bedroom that I use as punch bag and cuddle up to. Funnily enough it helps.

Your conditions are serious, but it is down to the medical team find a solution. It may not be ideal but they may recommend a way forward. Don't lose heart until you have spoken about the proposed treatment plan. Make sure you jot down any questions you may want to ask.

Sledge x

Thank you so much, this is the best thing I’ve done so far joining this group.    It has helped tremendously.    Everyone here is on the same journey.    The encouragement is fantastic and I feel relieved that I can come on here and share what I’m feeling without offense and without judgement.    I think, although I don’t talk about it an awful lot, I am reluctant to say anything as they’re going to get sick of me banging on about it.    

Thanks to all who have replied it means such a lot.   Xx    I am taking on board your suggestions and advice.    

Thankyou so much, your treatment seems to be very long, I’m so sorry.    I think cancer is always something to worry about and I am not a depressive person normally but find myself being depressed these last few weeks.    I keep trying to snap out of it but it isn’t easy is it?      I am also a Christian, when you say religious are you also a Christian or some other faith?   It does help though as if you believe, you are never totally alone.    Xxx

I’m a Christian who’s also involved with multi faith organisations and events involving those of Jewish and Muslim faiths. I don’t seek to persuade anyone but I’ll pray for anyone who needs or wants it  

Hi GmaUber 

Just checking in to see how you are doing. The wait is always awful and sometimes your mind is like a dog with a bone.  (Hope that makes you laugh!)

Thinking of you.

Love

Sledge x