Video re Mets BC .... EVERYONE needs to watch it
My sister just shared this video on Facebook - this video went viral in 2015 in the USA and around the world, currently with 54,000,000+ views on Facebook alone. Holley Kitchen passed away in January, 2016, from Mets BC, age 43. 30% of those diagnosed with 'early, treatable, non spread' BC who have been told there is NED (No Evidence of Disease) will go on to be diagnosed with Metastatic BC - whether they have had their breasts removed or not. Most with BC are not made aware of this possibility in consultations with their surgeon or Oncs - but you NEED TO KNOW - so that if you DO GET unexplained ACHES & PAINS in the coming years - GET CHECKED OUT! It COULD be an indication of a problem. https://www.youtube.com/watch?v=QDQ0FjP7J-c And her follow up video a few weeks later - a 40% increase in awareness of Mets BC due to her earlier video. https://www.youtube.com/watch?v=63yTZxj7FOk An interview with Holley Kitchen re Mets BC https://www.youtube.com/watch?v=ijN11LLteTw There needs to be more research into Mets BC - to be able to identify it earlier & treat it better.
Anniversary
Today is the first anniversary of my mammogram. I was pretty stony faced. Nine months before my sister had died from breast cancer and I was resentful of the inefficiency at the front desk, the pink positivity messages and images plastered everywhere, and the long wait, despite the fact I had an appointment. I was asked if I wanted to take part in a study comparing detection results between 2D and 3D mammograms. I'd be randomly assigned. Always happy to be part of a medical study I said yes. I got 2D. It was a shabby shabby building, not a nice environment. The woman doing the mammogram was professional. Serious, but pleasant enough. She made small talk about kids, mine, hers. I get it, but I really didn't want to talk. I just wanted it over and done with, to get the hell out of that dingy place. The mammogram was uncomfortable but no more than that. As I was getting dressed she said sorry, I just need to do one more. Why? The image is a bit blurred, it's not unusual, the plates might have shifted slightly. Bra off and back I went. After it was all done she wished me good luck. Why? With the teenagers she said. Oh yes, you too. I left, recovered my mood and congratulated myself on getting it done, how efficient and good I am. Virtuous even... The boob she re-imaged (blurred image my foot) was the right one with the tumour in it, and three weeks later I knew what the good luck wishes meant. It's weird how the anniversaries of trauma are unsettling. I mean, time is a manmade construct and it's just another day determined by how long our planet takes to travel round the sun, right? I mentioned it to the psych on Thursday and she said the memories trigger our nervous systems to 'remember' as well, and we physically relive our response. I don't have trauma round that mammogram, but three weeks from now I won't be able to say 'this time last year I was happy' etc. My naive innocence was about to end and as I approach that time I am feeling unsettled by it. I theory my life is better now. I'm certainly healthier with, as far as I'm aware, a body free of cancer. However in fact, I'm sadder, sorer, mutilated, diminished and more tired. It's difficult to feel it's a victory. I hope the second anniversaries are better than the first ones. How are your anniversaries?Liz O'Riordan - breast surgeon with BC Recommended to Read
I found this blog by an English breast surgeon who got BC herself to be incredibly useful & informative when I was first diagnosed. And then most especially the chemo guide when I found out I had to have it myself. She hasn't posted for a long time but a notification just popped into my inbox, she's writing again. So if you're into blogs, check it out. http://liz.oriordan.co.uk/MovingOn_files/this-is-who-I-am.html
So much for good vibes. Scan day sucked . They've called me back.
This may come out not making sense as I am somewhere in between being scared shitless and f*/#&%g furious. So after the mammogram and u/sound the doctor popped her head in (obviously they could see I was starting to freak out) and said there was no changes to last years scans. Gave me a smile and said goodbye. Phew. I was feeling quite positive after that until the receptionist rang and said I needed to come back for another targeted ultra sound as the MRI had picked up something. The other two hadn't, yet again! Oh and the doctor wanted me to go tomorrow and follow her to their other facility as she is only in Ipswich on Thursdays and wanted to talk to me. So my head is in a mess and the tears are starting, my heart is pounding and I've got the shakes. I don't know if I can do all that again. I know I am over thinking and not to freak out totally before I know for sure. But FAAARRRKKK this shit,
Where did my gratitude go? I swear I left it right here somewhere...
can anyone relate to that feeling of getting through a bloody battle of all the treatment, the horror, the fight, and then that awesome feeling of sheer happy gratitude after it’s over? and you wanted to grab everyone and hug them and swore you’d never let a single second go by without being thrilled to be alive and not sick? and you were going to live an amazing productive love filled life embracing everything because you knew how fragile life can be? yeah. I’ve lost that. I’m depressed and wondering where the F_@&! did all of my pure gratitude and excitement go? I’m so angry at myself for being like this after fighting so hard to make it through. Has as anyone else found they just don’t have that spirit of gladness in everyday life anymore, that cancer stripped away your spark and you’ll never get it back and care about anything ever again?
Un pc thoughts
So im writing this just to get it out. I dont really expect a solution. Apologise in advance if the un pc nature of this is not nice. I am getting a counsellor soon. Ive been aware all along that im somehow responsible for how others feel about my cancer but lately I've felt something doesn't quite work for me and I'm struggling to find any way to express it without crossing some taboo. I get the impression im supposed to be selfless but the way people behave is not without consequences to me. In short .. here comes the un pc part, some people are emotionally retarded. I have barely seen my brother since my diagnosis 3 months ago. Last year when he ruptured his Achilles and had 6 weeks off work I visited him 4 or 5 times despite being busy myself. I listened ( with my medical phobias) to his descriptions of what happened when he took the boot off. I know that he cares but somewhere outside of my understanding about his discomfort im a bit hurt that he can't move through it and make some effort. I saw him yesterday at my mums bday lunch and despite barely speaking to me at the end he said its good to see you. I thought really? At what point will it register that he could have helped me in some small way? I had coffee with a more self aware person yesterday and she confessed that she was afraid I might look unhealthy. She said my eyes were bright and I looked good. I do not look good. I had made an effort and wore make-up a nice dress. I thought I looked alright. Photos after told me im deluded. My hubby said as I was getting ready for coffee " so you will dress up for her but not me". On the weekend he asked if I could wear my scarf differently. I said I wasn't born with the knowledge of how to tie scarfs and I was struggling with my appearance. My hubby has always praised me for not wearing a lot of make-up. Do I have to wear make-up at home now to make him feel better? This is not something that requires an answer. My sister was having a rough day. We chatted. At the end she said but its trivial in comparison to what you are dealing with I shouldn't complain. I said of course you should. Just because im unwell doesn't mean your life is less trivial. How many people are shutting me out of their life because I have cancer and their world is too trivial now? How many people are avoiding me because I look unwell? These are difficult things. Sometimes I want things to be the same but sometimes I want some acknowledgement. I want people to understand a bit without all the social expectations. I dont want to have to protect people all the time and be understanding.
Just diagnosed but cannot even contact a surgeon until 9th January. Stress levels high.
I received by biopsy results on Christmas Eve, stage 2 invasive ductal carcinoma. GREAT! I was given a referral which was marked urgent and sent to the surgeon and told to call them on 28th December. That was a wonderful Christmas period, NOT. But once I thought I could get the ball rolling I felt a bit better. I rang to find they are closed until 9th January, and so is the other surgeon I am referred to. I cannot find anyone open, the GP is sweet but not helpful and I am going quietly mad. The receptionists say that is a problem at this time of the year, which is not helpful and I feel like screaming at them. This is cancer here, it doesn't pause for the Christmas period. Another 10 days waiting to even get to find someone let alone get an appointment. Keeping busy helps for a while but I just hope to heaven it is not progressing while I wait, it has already been over 3 weeks of tests and scans since I found it. I am so glad to have just found this site.
Feeling numb & sad as cancer is spreading
I was diagnosed with metastatic breast cancer in 2015. I was told it had spread to my liver & lymph nodes in my chest. The cancer started slowly growing in my liver last year, so tried two different types of chemo. Abraxane didn't work at all so was taken off that within 6 weeks. I was on Eribulin for around six months. The CT scan showed that the Eribulin was keeping the cancer stable in the liver & chest, but my tumour markers were going up. So my oncologist was concerned so sent me off for a bone scan last week. Today I have been told the cancer has spread into my bones in my lower back, legs & left arm. I thought we had the cancer under control. Obviously not! I am very upset by this news. I feel numb! The reality is starting to set in for me that I will not see my kids grow into teenagers. I am sorry if this sounds morbid to some people but it is my reality. The tears are flowing now....
Adjusting to bad news, staying hopeful, changing habits
Hi, I am a 44 year old mother of two girls, 3 and 7. Was diagnosed with breast cancer on Tuesday evening after a mammogram and ultrasound in the morning. On Wednesday I saw a specialist who sent me for biopsies and scans. On Thursday afternoon I learnt that I have HER2 positive BC in my right breast (3x3cm with two smaller tumours nearby), and one lymph node biopsied because it was enlarged was also cancerous. A lump on the left was benign. It does not appear to have spread to bones, pelvis, liver etc however there were two 5mm nodules in my lung that might be BC. I am hoping they are something else but have to be prepared in case the cancer already is stage 4. I remember the doctor said it was grade 2-3 but not sure if that is the same thing as stage 2-3. I have somehow lost the reports, so I can't look over the details until they are mailed but I have an appointment on Wednesday with a different specialist to plan treatment. I am glad that things are moving quickly but am still reeling from the news and wish the appointment was sooner. I think I will be having preadjuvant chemo and/or targeted treatment, followed by a mastectomy of the right breast in several months (with optional rebuild), however I have not met with the oncologist so am not sure what to expect. I should have gotten to a GP weeks ago as I had noticed hardness over many months (which I had thought was related to it being dominant for milk production) and had a sore breast in early July, however because I was breastfeeding and fairly ignorant of BC I mistook the symptoms including a swollen lymph node for mastitis. Only when all pain went way and I noticed the boob seemed bigger and misshapen with a prominent lump did I get myself to a doctor. Waited a week and a half for the scan that showed it was as suspected a malignant carcinoma. Strange thing is it only started hurting again after I learned what it was. I don't know much yet but am trying to learn a bit without scaring myself too much or googling into the night. My youngest daughter has weaned herself, and on the night of the diagnosis she accepted bedtime without breast, understanding that I have sick boobies and the doctor said we should stop. In the middle of the night she was desperate to breastfeed, and I allowed this briefly. That is the last time I fed her, and she has been proud of herself for giving it up but has wanted to kiss it and hug it today. Next move is for me to give up smoking, a bad habit of mine for many years off and on, which is not easy when it has been a response to stress and I have been quite stressed at times. It must be done, as I understand that it increases the risk of metastasis (if it has not already happened) and I wouldn't want to invite another cancer along right now. But I am trying to be gentle with myself when I occasionally light them only to put them out shortly thereafter. I hope to eliminate this habit fully by Wednesday. I have to clean up my diet and prepare for the treatment. I was a lifelong vegetarian until my early thirties however I have eaten a tiny bit of fish in the past ten years. I eat lots of fruit and veg. However I do have too many sugary things and processed stuff so I need to cut the crap out of the shopping list. Emotionally I have been struggling a bit and I should arrange some counselling to work through my feelings. My mother and friends have been amazing, my husband has been a good support but doesn't like to see me crying, which I think is just a normal thing from time to time in such a circumstance. I am being open and honest with the kids and have been giving them lots of love and sweetness. Honestly I am sometimes very scared but I am trying to be strong for myself and for everyone around me. Sending love and understanding to others with BC, and those who have recently been diagnosed, it's pretty tough to take, huh?
