Hello ladies
It’s 4 am. I cannot sleep. Cannot switch off. Cannot put my head on the pillow and even try.
I’m so emotional I don’t know where to turn…so here I am on here again…oops.
Feel like I should be coping better. Feel I don’t know what…
Not a crying sort of person and the tears just keeping rippling. I feel silly. I know there’s so many people going through harder or worse things in the world.
When I saw the fertility Dr, he said we could all have died on the way to work and that’s life hey ho…told me he wouldn’t want to be in my shoes at the moment…
Oh so helpful … not.
I don’t know which way to turn. I have decisions to make and don’t know who to look to or talk things out with.
I sound like a cry baby. Just want to pull myself together but cannot I’m hurting.
So confused by everything. Ladies on here know exactly what type and grade and stage there bc is and my Drs won’t tell me say it’s best not to know or they won’t know until they remove it which could be months time. Why? Why when I ask them to be straight with me do they not give the info?
I asked about seeing my pathology report and my nurse chipped in that it’s a long document and I’d have to wade through it…all I really need is the summary… well if I can have that why haven’t they sent one?! Nurse told me on the phone early last week that surgeon should have sent it in the post hadn’t I got it already? No. Still haven’t.
I’m signing my life away for the next few months and I don’t even know what I’ve got. I’m making decisions that will affect my life and future and I haven’t a friend who will listen and not add their rubbish and life perspective to it.
So tough.
Waiting for morning to come to get up again. Will ring the helpline see if they can suggest something or let me say what I’m thinking through. Panicking I will make wrong decision re fertility and chemo starting.
Got a migraine probably from the stress and worry coming at me from all angles.
So sorry to read your post I feel for you and send hugs , I was diagnosed in November after routine mammogram I had no symptoms at all so was shocked beyond words when I was called back within 2 days and had a biopsy done and was told instantly that I had cancer and it was very large tumour and also in my lymph nodes , it was hard to except when I felt so well but within four weeks of that day I was in theatre and had a full masectomy with all lymph nodes removed which had cancer in 13 of them and was mastactic , I just started to heel and then within 6 weeks I started chemo , I had my second session yesterday hence why awake now , I had a melt down about 3 weeks ago as everything happened so fast I think it caught up with me and while in hospital just started shouting at everybody and I think it was me realising everything as I have felt better since , I find it strange that they haven’t told you what your dealing , I want to tell you that the treatment is doable side effects not to bad , when you read some posts on here they can frighten you but remember we are all different , I wish. You luck in about 3 hours trying to get some answers but just wanted you to know someone else is up and thinking of you xxx
Well, I’m on a cruise ship going to NZ, 6pm here & just seen your post. 3-4am is the worst time, I think I’ve heard it referred to as the hour of the wolf, when the worst of our anxieties can take hold.
So sorry to hear you’re going through this, it’s that awful limbo land when just diagnosed & you have so many decisions to make.
The final results on grade & size are not confirmed until post surgery, unless you have chemo first, it won’t be months away. Your drs are not keeping anything from you, but you do need to be clear about what the biopsy results showed. As you have said, do get back to your team, BCN or whatever, to go through & explain your biopsy results.
It doesn’t feel like it now, but you will make the decisions you need to, to move forward.
Try not to compare yourself to others, because our diagnoses & treatments are all different.
You are quite entitled to feel the way you do, you’re not a cry baby, you’re just going through some very tough stuff at the moment. We can sometimes have very high expectations of ourselves.
Thank you both for replying. That helps so much. Have had a really tough night. Yes I think it catches up with you and the waiting and confusion becomes that ’ wolf’. It helps to know it happens and I’m not really alone.
Have made a cup of tea and am preparing to make calls to find out more. I will push.
Thank you again so much for replying. It has helped. XO
hi again, Pineapples,
just ro reiterate what Jobey said, I also got copies of all correspondence sent to my gp. If this is not happening, then query this. I understand it is usual practice to get copies of letters, unless you opt out. So do query this & let is know how you get on.
ann x
I too feel its unfair you’ve not been given any idea on the basics of the needle biopsy. I have heard of this happening before though, where surgeons and oncs don’t like to give out information ‘incase’ it changes, however, the changes after full biopsy are generally not major changes. As an example, my tumour was 1 mm larger after removal than they calculated at the ultrasound, and the grade moved one notch higher. However, the ‘type’ of cancer found remained the same as from the original biopsy. I really think the others are right, this lack of knowledge is causing you so much stress and its time to go see that BCN and talk things through.
I absolutley believe that you have a right to know what they know now, when I was given my diagnosis I was told that it was tubular, grade 1, hormone receptor positive and was given a treatment plan. My BCN told me that it is possible that the grading could go up and that things might change depending on if it was in my lymph nodes but that they would not know any of that until after surgery. so I was prepared for a possible change, but it stayed exactly the same Your doctors are unreasonable not telling you what they know now, how can they expect you to make informed decision etc, especially in relation to your fertility without this.
I am astounded by the comments of your fertility doctor, nice bedside manner and I think a course on tact would not go amiss!!
You are absolutely not a cry baby, you are going through a hell of a lot at the moment and have so many questions. As ann said its that time of the morning when all your demons come out
Sending you a massive hug and always remember we are here for you my dear
Hi pinapples , i found out about most of my stuff through my doctors copies …first one said my us showed a 4.4 cm lump with iymph involvement , 2 weeks later my ongologist measured my breast lump with a tape measure of all things , hence my next letter said she had measured a 12 x 8 cm lump .i had been told none of this or why the big size difference in a matter of 2 weeks .makes me worry that in weeks ive waited for chemo it has spread elsewhere as that seems enormous growth in short space of time and dont feel comfortable that its fixable now after those measurement .which would be mortifying as i found my first chemo hard going i hope you get some answers to whats happening x
Hi sue , must say first chemo has hit me like a rock dont think i have ever in my life felt so ill .tonight the steriods have kept me awake hence meaning i can’t ignore the nausea…nurse is due for next 7 days to do my gcsf injections so not relying on things getting better before next chemo .cant remember what one that said regarding lump , i know its the most common one and invasive , had spread to lymphs under arm .tbh i still feel this could of been avoided 10 months ago had my doctor had sent me for scans and not misdiagnosed me , as it was much smaller then , i feel mastectomy will always be on the cards but it is to make it smaller first .It is cm’s which it had been mm x
Hi pineapple
I agree with all this incredible ladies … and yes Helenas right , you are entitled to know all the information they have whether it changes or not … you are not a child.
I wrote my bcn and email saying I wanted copies of all my notes from date of first clinic appt i.e.: 28/12/16 to now including all correspondence and results from scans and pathology.
They are legally obligated to provide that if you ask in writing and an email is writing so …, yesterday it all turned up on my door ?.. I haven’t looked at it yet as need to build myself up to that ?and I hope I know all of it anyway.
I also needed it for DWP AND PIP claim and insurance purposes so you can always site that as a reason for your notes.
I hope this helps you and I’m so sorry as you do not need this when you are going through such an awful time anyway.
My friend had cancer 12 years ago and has a 9 year old boy now at 42 so there is hope darling .
Xxxxxxxxxxc