Forum Discussion
Hiding in plain sight
Hi everyone, just a ‘newbie’ here.
My name is Julie & I was diagnosed with ILC on the 11th Dec 2019 & so far it’s been full on, appointments....appointments & one more scan, biopsy after another.
Truth was, I was at the end of a very long work year & getting ready for a month long holiday mode & then my world was turned around with the diagnosis of Invasive Lobular Carcinoma.
I didn’t have time for that little gem to drop it’s bomb on me. I had Christmas planned, not to mention a very long awaited trip all organised.....
But now I’ve entered into the world of Dr’s, scans, MRI’s, biopsies....biopsies & then even more scans & even more biopsies.
Meanwhile I’m sitting here, in plain sight hiding from the world & nobody can see the raging mess my head has become.
I’ve found myself going to bed so tired I can hardly keep my eyes open, and then lying down, totally wide awake, as the words rattle in my head........... You’ve got Breast Cancer. You’ve got Breast Cancer. You’ve got Breast Cancer.
I’m having a dye injected into my right breast this afternoon, then a hook wire inserted first thing tomorrow, then surgery tomorrow sometime. I guess I’m lucky things are happening so fast.
Family & friends have been great, it’s just difficult to be totally honest with them & voicing all my fears - I can’t frighten them any more than they already are, so I’m here, writing down my thoughts and trying to get my head clearer.
Thanks for the platform to do so.
It’s helped.
My name is Julie & I was diagnosed with ILC on the 11th Dec 2019 & so far it’s been full on, appointments....appointments & one more scan, biopsy after another.
Truth was, I was at the end of a very long work year & getting ready for a month long holiday mode & then my world was turned around with the diagnosis of Invasive Lobular Carcinoma.
I didn’t have time for that little gem to drop it’s bomb on me. I had Christmas planned, not to mention a very long awaited trip all organised.....
But now I’ve entered into the world of Dr’s, scans, MRI’s, biopsies....biopsies & then even more scans & even more biopsies.
Meanwhile I’m sitting here, in plain sight hiding from the world & nobody can see the raging mess my head has become.
I’ve found myself going to bed so tired I can hardly keep my eyes open, and then lying down, totally wide awake, as the words rattle in my head........... You’ve got Breast Cancer. You’ve got Breast Cancer. You’ve got Breast Cancer.
I’m having a dye injected into my right breast this afternoon, then a hook wire inserted first thing tomorrow, then surgery tomorrow sometime. I guess I’m lucky things are happening so fast.
Family & friends have been great, it’s just difficult to be totally honest with them & voicing all my fears - I can’t frighten them any more than they already are, so I’m here, writing down my thoughts and trying to get my head clearer.
Thanks for the platform to do so.
It’s helped.
16 Replies
- Hi @BowerBird11, I hope you are recovering well after your surgery. Those early days are so confusing and confronting but it is good to have somewhere here to ask questions and vent when necessary. I had my mastectomy back in 2012, almost 8yrs ago now and the main tumour was ILC (strongly ER & PR+). It was a scary time but I'm blessed to still be here and hopefully will be for many years to come. Best wishes to you xx
- Hi @BowerBird11
I hope all went well today with your surgery? I found the first couple of months after BC diagnosis (20/6/2019) I was in shock, with lots of scans, tests and the start of treatment etc ..Though there are many ups and downs through the BC journey and treatments, I have settled down to some degree and manage by trying not to predict or anticipate too much well not too much anyway). I'm not sure if others have found this too.With every good wish to you. xx - Hi @BowerBird11
Sorry you're here. The sisterhood is amazing though :)
Its a steep learning curve, and really does spin your head at first.
Hang in there, just take one day at a time. Or one hour. Whatever works! It’s how I get through this...
xx - Hi @Bowerbird 11,
I was diagnoses 29 October, second surgery 6 November. Pain medication and an ice pack wrapped in a hand-towel helped a lot. Although very stiff and sore at first, I followed all of the post-surgery daily exercise instructions to keep my arm mobile and the stiffness has completely gone. The incision is now fully closed, flattened and pain-free. It took time, but it's remarkable how the body adjusts and heals. I also took soluble vitamin c with zinc, which I think sped up the healing, as did Giovene Specialised Scar Formula. I hope that's of some help in the meantime.
The BC nurse in my area must be very busy as I have not met her. I have communicated by email and phone a couple of times, with days going by before I get a response. A bit disappointing. Could have done with the support immediately after surgery and during treatment decision-making.
The mental stress, sleeplessness, multiple tests and procedures continue - but it's definitely getting a bit easier to manage. This forum has been very helpful. Good luck. - thinking of you and hoping all went well with the surgery xx
- Hope all went well with your surgery. Your raging head will gradually settle in time and become less strident thankfully but right now it’s all traumatic. Sending a gentle hug and best wishes. BC is a curse.
- Best of luck with results from surgery @BowerBird11 the timing of a diagnosis will never be right. Use any support offered and take time for yourself. Know that this community is here for you. Gentle hugs
- Hi there, lovely Julie @ BowerBird11. I feel for you, and want to reassure you that, with the support of your close friends, family, and your good health care network (namely your breast care nurse at your treatment centre, hopefully you have one there), you will likely feel well supported, more at ease, and better informed as time goes on.
Treatment has come a long way, and there are many survivors, who grow stronger, find new direction, interests etc.
I had the time to teach myself the piano, the chords and melodies helped me express so much emotion that was a great healing force for me.
Your true grit friends will arrange a cooking roster, which is a godsend when you have treatment, feel low in energy, or when hubby/partner etc need support too. Say yes to any help - don't be shy, but be honest when you're too tired and don't want company.
I'm a long way on from my IDC & surgery, treatment etc, back in 2010 & happily, out the other side, (having finished Tamoxifen 6 months ago).
Good luck - Hi @BowerBird11 - SO sorry to see you here & glad that you've had your surgery today, as the waiting time between discovery, diagnosis & surgery is usually totally horrible. Feel free to throw up any question or rant re your experiences ..... as we've seen or done most of them ourselves & know how it feels. It is such a whirlwind when it happens - and it really does muck with your brain. Falling asleep is often a casualty! :( Maybe ask your Dr for some Temase to take occasionally, if needed ..... All the best for your pathology results xx
I was diagnosed with ILC this time 2 years ago & had my surgery in mid Jan back then. I was lucky, it was small, caught early & I had a lumpectomy & then radiation, and now on tablets. Wishing you all the best for your recovery from surgery.
Make sure you have a soft cushion to hold onto the first week or so when you are travelling in the car, to stop jarring, as it does hurt a bit (and it comes in handy for when you are sleeping to support your arm too.) Take the pain killers for at least a week - longer if needed. If anyone offers to do the cooking and/or housework, take them up on it.
That is terrific that you have supportive family & friends .... take care, xxxx - Hi @BowerBird11 and welcome, though none of us wanted to join in the first instance. I don't have ILC, I had IDC
Please be aware that there is a separeate, closed group within the forum for those with ILC. If you look under Groups, you should find it, and be able to ask to join. That will then depend on one of the group admin being online to accept you to the group.
ILC does have it's own quite separate issues to IDC, so I was pleased to see that group formed.
Please feel comfortable to come and ask questions, vent, whatever you need. You'll find a very supportive group of predominantly women, with some men, and increasing numbers of partners.
Take care
