Just been diagnosed, BC - triple negative

Hi there,

I joined the group a couple of weeks ago after my scan and biopsy and found it useful and supportive reading what everyone is going through and their advice whilst we all face the C word!

I've now received my diagnosis and plucked up the courage to say 'HI!' :)  I'm still reading up on all the booklets i've received. A strange feeling really counting the days down to your appointment like a holiday without the excited feeling and now coming home with loads of booklets and not holiday brochures.  i feel strange that i have a sense of relief but a strange relief as I do have cancer and not the all clear.  Does anyone else have these mixed feelings?

I've been diagnosed with stage 2, grade 3 and triple negative.  Well from my understanding, i'm waiting for the confirmations to all come in the post.  I remember them saying 18 weeks chemo, 5cm tumour, lymph nodes, masectomy, radiotherapy....

I still feel very detached and like they are talking about someone else as i dont feel ill.  I was hoping to be pregnant :( so feel very sad tonight that is unlikely to happen now with my diagnosis and that i'm 42.

So mixed feelings all around tonight. 

Mich x

 

 

  • Hi ladies,

    I live in Northwood in NW London, Middx.

    It's fairly peaceful the part I'm in and I have a garden to escape in at least but feel I dont get to enjoy it as much as I'd like too.

    I have been trying to tidy it alot to day cutting back trees and repotting plants etc. Its been a nice sunny day today and I hear we have more fine weather on the way.

    Davia don't  worry about the backache I still get that myself post chemo and its probably because I'm not good at relaxing and need to listen to my body more like I keep telling you to rest where possible 

    I had full clearance on my left arm as even though only 2 nodes were affected, I had 19 removed. I hate the tennis ball feel and tightness which seems to be permanently there and uncomfortable, and wonder whether it will ever subside!

    I have the shooting pains often to but dont be alarmed  as it's just the nerves regenerating.

    I am on diazepam for anxiety but I dont take it every day and keep it by for days when I feel very anxious, and it does help.I  also take it before any appointments.

    I couldn't have gone through the breast MRI without it but it's been since the brca diagnosis that anxiety has been a major issue with me and as my oncologist keeps reminding me that I have a 60 - 80% lifetime risk of a further breast tumour even though I had a complete response and she says this knowing about my anxiety!

    This is why I'm waiting for my preventative surgeries which they argued weren't necessary before and just insisted lumpectomy for both breasts would be sufficient.

    I wouldn't take the diazepam too often as it can be addictive.

    Hugs

     

    Karyn  xx

     

  • Hi Karyn

    I can imagion your anxiety over your appointment, it's really hard specially the waiting, it's never going to get easier I think we will always have that anxiety during after and waiting for test results, my Brother says it is Post Traumatic stress syndrome, I think he is right, we have all been through the milll and it seems continue to tread that mill, hopefully one day we can learn to live without it being the first thing on our brains in the mornings, i personally don't feel "normal" yet, or like me, yet, i really thought I'd feel better in myself by now, But Karyn your right in that I need to listen to my body, I do try and push through hoping I will get more energy by doing so but you don't, it just exhausts you and you feel really rubbish the next day, so I'm going to take your advice and try to just rest when I need to and I also need to tell myself I'm not going to be able to do the things I did before BC not yet anyways.

    I think this Covid isn't helping us, if it wasn't for lockdown I think we could be out and about and our minds would be otherwise distracted for short times, we could even go on a holiday, I'd love to go on a narrow boat holiday, just poodle along a lovely canal, so I feel we are maybe struggling more, more so with appointments, my BC nurse said if it wasn't for Covid she could refer me to physio and like you Karyn, waiting for results and waiting for surgeries, it's all the waiting that is the hardest part. 

    Oh I do have some diazapam, I was prescribed it for my MRI scan as I'm very claustrophobic, I will take one when I'm feeling my anxiety is taking over see how I feel, but I worry they may become addictive, but if I o ly take one now and again it should be OK

     

    I hope you hear soom Karyn, I know how your feeling, its horrid, if I could take it away somehow I would.

    Sending BIG hugs

  • Hi Ladies,

    Davia, when I was first diagnosed I was prescribed Diazepam for anxiety. When I tried to get another prescription I was told no as it is really adictive. I then was prescribed sleeping tablets as I was unable to sleep but they too are adictive so it depends on your Doctor as to whether they will even prescribe it. I have to beg everytime I want a prescrition which is a bit much as they know what I have been going through. Rant over. I do have a garden that's where I can always be found in the summer. We have recently had decking put down and feel blessed that I have somewhere peaceful to sit.

    Karyn, once your surgeries are done, you will be well on the way to recovery. I hated all the waiting for results, the strees is unbearable. Have you got support at home?

    I hope everyone is well. This time next year we will all be on the Survivors thread giving hope to others and telling our success stories.

    love to all xxx

     

    I

  • Hi Mich

    How did mapping go? Were you able to hold arms up long enough, and do you like your new tattoos lol I remember filling in one of those Facebook things and it said, do you have tattoo, I said yes 3, so many friends replied, oh were are they, I've never seen your tattoos did they advise you to start moisturising now, I started to moisturise few weeks before my rads I think it will help.

    How are you feeling? Have you managed to get out at all?

    Take care, not long now before rads start

  • Hi Claire 

    How you doing, have you finished radio, how has it gone? Hope your OK xxx

  • Sue, have you decided what your going to do regarding the Cape?

    It's such a hard decision and can't be helping with any anxiety you maybe having

    Hope your well, sending hugs xxxx

  • Hi Davia,

    I am leaning towards not having it. My Oncologist said he bought my case up in a meeting even though I wasn't due to be discussed and his collegues said they wouldn't give it because of the virus. He said he the decision had to be mine and whatever I dicided wouldn't be wrong.

    The experts can't agree whether it will help, I think they are clutching at straws.

    xxx

  • Hi Sue

    Yes I was prescribed phenigan in the beginning, I take them at night time as they make you very drowsy, I think they help with sleeping but don't seem to touch the anxiety, I'm going to ask my Dr if I can have tablets specifically for anxiety see what he says, some days I feel I could explode and I wouldn't be surprised if men in white coats came to take me away lol sounds quite exciting that

    Keep enjoying garden, we are luckier than some who don't have gardens

    Love and hugs xxx

  • Hi Sue

    Well reading your post on the % it would give you, if I remember it was around 5% that's very small for such a big risk and also not really knowing if it will work or how you would tolerate it I think I would make the same decision, I feel if they thought it would make a big difference they wouldn't ask they would just say, this is what we have proposed we do now, like when we were given chemo.

    It must be so hard for you, to have that put in the mix and them say, it's your choice, I feel for you really, I wonder if they know how hard this journey is for us all and adding dynamite like they have with you with Cape just really doesn't help. 

    Stay strong,

     

  • Thanks Davia,

    I am really worried about a recurrance as we all are. I was hoping that the fear would subside but my stress levels are through the roof. I find it srange that no one else on this thread has been offered the oral chemo, strange and unsettling.

    Enjoy your garden today, I will be delegating as my husband does the hard work. He has done a good job so far and the flowers look beautiful. 

    Stay strong

    Love Sue xxx