I am originally from the U.S. and have been living in the UK now for 6 years. I absolutely love it here and am in awe of the many things that I see as I walk around good old London each day. I help survivors when they are done with the medical journey to transition into that next chapter in their lives after mastectomy.
Interestingly enough, the survivor community is a lot more private here than in the US. I find the search to speak at these groups and get the word out is almost like a best kept secret. Is it really of benefit to survivors not to have a voice? Is it not giving them more of a feeling of being the ‘invisible survivor’ not having a voice to their concerns after treatment has stopped?
I hear you out there and I understand the many concerns that are going on inside your head. One thing I get, very deeply, is the many things that are not addressed and are only assumed in the healthcare system. You need a place to feel heard and to be seen as you, scars and all. I realise that I may limit myself by not searching more strenuously for the silent survivor. I am interested in helping you, in giving you a voice and allowing you to feel congruent with the incongruency you may be feeling after this big change in your life.
Many women decide that their life is not the same and they want to release the life they had before and no one is there to tell you that it is ok. Well, I am here to tell you it is perfectly normal! We love you and we love that you are getting in tune with what makes you feel alive. Trust in the knowledge that you are awesome and I am here for you. I love my clients and I am so excited to help you find that connection. If you are not sure about the next step, the path forward, get in touch with me and let me know. I am happy to help. Remember, you are beautiful!
I’m not sure how close to home this might be for some but it’s something I am currently going through and feel I need to get it out.
Trust has been a very ‘divine’ thing to me. I mean that in a way of divinity not the feeling. See, trust is a very unconditional thing. When you have it in a relationship it can create a certain sanctity and wholeness that is quite relaxing.
I think the rapid growth of social media has allowed for certain subjects to be ‘read into’ and creates a bit of a perplexing challenge for couples. Not only couples though, for friends as well. An example, a friend says they can’t go out and the next morning the photos are posted of the good time they went and had with other friends. That bit I don’t get because I’m the type of girl who loves to share all friends with each other because if I think they are awesome then, most certainly, they will agree!
So, anyway, back to it, this trust thing is easily given but not so easy to recover once broken. I have to admit there was a massive rift with my partner years back that created a lack of trust and it took me a long time to regain a feeling of complete trust in us again.
I won’t go into total detail of what was done but I will say that it made me feel violated and very hurt. It was a breach of something I held very dear between us and in a long moment of his indiscretion it got wiped away all for his own fear. I could go into the reasons he should have no right to do what he did but that’s really not the point.
I am a very forgiving person when it comes to someone I love purely and unconditionally so when this breach occurred my mind was boggled. BUT, my live for him was so strong that I felt I could move from it. If you’re guessing an affair, no, that’s not what it was.
Over the years, there have been several occasions of his breaking me down, down into a young girl who can’t speak for herself. All because I held in my feelings from this breach. I should have addressed it head on but I was afraid, afraid to feel, afraid to be left, afraid to be raw and hurting again from it.
In this last year the ebb and flow of our relationship has been tumultuous and I’ve been a very sad girl for the lack of togetherness that I long for.
This morning I went to perform a simple task in our office and found that I couldn’t do it because passwords had been changed and once again that pain in my heart and stomach came and I felt as though the trust was gone.
I don’t know what the way forward is but I know things must change. This is beyond dysfunctional and no matter how much you try to sugar coat it, it’s broken and needs repair. Not taking about it doesn’t work! Ignoring the elephant in the living room, will not make less elephant poo to clean up!
I feel as though my things are not my own, I have no place unless that place fits into the small spot over there in the corner. That’s no way to live.
So ladies and gents, this is the raw me, feeling and being open and honest about my feeling of being unloved. I’m not sure where it goes from here and if it is salvageable. I do know that doing it alone has become lovely and I’m not to keen on being alone while sleeping in the same bed as someone. It’s quite depressing. Love me for me and if not, well move along to someone who you feel you can live and trust because you certainly don’t trust me. There’s a saying, ‘you get what you give.’ That seems to apply here.
So, the news of a survivor I follow on Twitter has come up. She has cancer again, this time in her lungs. One of the most common things I hear from survivors is that they are very much afraid of reoccurrence.
Rightly so! After going thru a battle of such proportions the last thing we want is to go thru it again! It’s really difficult to hear news like this. My mother got the all clear 5 years after her mastectomy and at 5 1/2 years they diagnosed her with cancer in her bones and liver and gave her 8 months.
Mom was very much denying it all. She couldn’t understand how they cleared her only 6 months before. It was really shitty news and she could not digest it at all. Her response was very vague, she told us nothing until my brother put things together and asked her if he could join her on her visit to the doctor. The news was devastating. For two months mom had carried on as though she had been told she had the flu.
My brother called me and told me the news, by then it was down to 6 months. She was very much in decline. I took time away from work and went to see her. It was very apparent from the yellowing of her once tan skin that there were liver problems. She was smiling and convinced she could beat this. It was apparent that she was trying to keep us from seeing the dragon within that was pulling her energy and convincing her that she was not going to get thru this.
My mother shared with me that she believed if you speak of dying or of a disease killing you then it would come real. She was avoiding giving it energy at all cost! The problem was, she was also festering with doubt in her head and that can be even more damning to our body as well. Mom always put on a big front, an appearance that she was very together and her life was up to snuff. All ‘appearances’ of course. She was very insecure and had a lot of struggle with alcohol. I understood it because of all the things she told me throughout our journey together as mother and daughter and the work we did together on her first occurrence of cancer. We did so much work on how she connected the loss of her breast with losing her femininity. There was such a strong connection that we went deeper into things that she never really expressed before.
My mother was adopted and she longed to find her real patents. It’s not that she disliked her adoptive parents, she just felt a disconnect. It’s a long story but things weren’t as functional as she had wished for as a young girl. Mom was keen to find her mother and when the state of Texas opened up records for her to be able to do that, she did. My mom found her mother and boy did you ever know they were related! Wow! Martha Jo was so much a ringer for my mom! A lovely lady but….she was not willing to open her life up to my mom. She had kept a secret for 58 years and was not prepared to divulge to her other daughter that there was another child. This was massively difficult for my mother. She had a sister and her excitement to meet her got shot down in flames by her mothers desire to keep the secret. It was devastating for her and the drinking progressively got worse.
As a generation removed I believe I had more of an understanding and respect for my grandmothers position but I also understood the pain my mom was going thru. I think this is what aided in her secondary cancer. She focused on the negative and really had a deep seeded passion to get into the lives of her new found family. She wanted to belong but it wasn’t allowed and that made her issues with self-esteem come up even more.
So when she was given the diagnosis of the cancer metasticizing in her body, she was hiding the reality of her diagnosis and, in turn, hiding the inner demons that she put to sleep 5 1/2 years before. The demons that told her she was not loved, cast aside and that her own mother had no place for her. A devastating blow to anyone.
I believe that my mother came to terms with all if this before she died 7 months after diagnosis. She was tired of fighting and her struggle internally and externally was worn out but she battled that demon in the end and gave it love, wrapped her arms around it and gave it the love that she didn’t feel. She knew that moving on meant she was to release the ties of this life from her. She was starting to live again even up to the weeks before she died.
When I say that she started to live again, I mean it in the way that she began to remember the work we had done together in connecting with the focus, and her ability to be able to focus on what she really wanted us to know before she passed on. She and I spoke of a holiday that she insisted I take if I got any money from her estate, she was convinced she had nothing. (She actually ended up giving me the holiday with what she left behind without knowing it.) She spoke to my son with hopes of giving him little morsels he could take away and remember her by. She really just gave herself to all of us in order to connect with what was in her power. We all came away from this experience with a new outlook on life. An empowering time for us all.
I stayed with her while she was still aware, I sang to her, read to her and talked to her. I told her that she was going to be fine. We locked eyes and with no words we were able to say ‘I’m sorry for any and all pain that occurred between us’ this was massive for us! We had cleared the path for her to move on. She was in a medically induced coma for a few days but it wasn’t until after I said to her that our older brother was not coming and gave her permission to go, that she passed. It was that night but she went peacefully.
I’m not sure how this story will affect people reading it but if I can give any message from it, it would be to focus on the positive. Remember it’s what you focus on that you get. My focus was on my mother getting all that she wanted in the last weeks of her life. My mothers focus was to give us all the details and information that she could share to enable us to feel she completely served us in her maternal way. We were able to laugh and cry and experience each other on a completely different level. This focus became my calling.
So I had an interesting experience yesterday. I reached out to a friend who I knew had been through a similar thing and thought she might have an outside view or ask me the right questions to help me figure out what direction I would go.
Keeping in mind this was about personal stuff and I only trust a few people with that information. The phone call was not answered so I text her. No response but then I checked my Facebook and there was an email from her saying if you want to book some time with me please refer to this (a link was inserted) to book a time with me.
I wasn’t sure that she understood it wasn’t for me to run business ideas with her it was for girlfriend talk. So I replied with ‘even for girlfriend talk?’ Her response, yes.
Now she had time to continue to write me messages trying to dig herself out of this hole but the damage was done and so was I. I am a good friend and I value the commitments I make to my friends. I find it very discerning when someone has decided that they will draw a line and only deal with you on a business level.
My heart broke a little but I imagine its a part of growing when you realise the level of friendships you want and the ones you actually get. These things are important and it helps us grow. So focus on what it teaches and it’s so much easier than going over and over the thing that hurt the most. Lesson learned, moving along now and happy to smile and brush myself off.
Go out and have a great day because its so much easier to smile than to frown
So I’ve been giving a lot if thought to some of the people that are in my circles of friends and have come to the realisation that there is a lot of them that have a big of snobbery going on. So this comes up a lot lately due to a couple of reasons.
1. I work with survivors and it is not the type of work that can be done in a heart centred way if I was being pretentious. 2. You really need to line up your whole life with what your core message because if you’re working in a business where you help people but don’t carry that over into your personal life you’re not being congruent with your message.
I have a couple of people in mind as I write this and they have businesses that help women but they are on Facebook posting things to other women that put across a totally different message. I find it interesting that two of these women have decided to do a joint venture in business and can’t understand why they aren’t getting the customers they swear they are serving. Their message is mixed and convoluted which creates confusion in their marketing.
I wholeheartedly love my survivors and live and breath my message because it lines up with who I am and what I live to do. I dance on the train platforms, in my seat and bop my head around in rush hour on the Tube when I have a crazy awesome song playing in my ear.
This should be the case with anyone you work with. If you have a gut feeling that the person you have chosen to work with isn’t right for you, dig deeper and make sure. It is soooo important to have people around you that empower you and feed your inner awesome. Don’t give energy to people that don’t serve you.
This marks the end of my dissertation. Back to the music of many inspiring singers that bring me into my train riding groove
Go out there and be the inner awesome outwardly! Love you all!
So today I am headed to Wales, in particular to an area called the Rondaa (spelling?) and it’s pretty exciting to be travelling but the downside is the colleague I am travelling with is not a fan of radio and is rumoured to be a conspiracy theorist. So the three hour drive I am looking at (one way) is perhaps not going to be as exciting as it could be.
I have taken precautions, charge up the Kindle, iPod, Note, and the add on charger for my phone. I hope I don’t have to wear tin foil on my head too! A part of me wants to look up some ‘conspiracy theories’ and perhaps give the trip a bit of excitement by making him think I am one of ‘them’ but then, I’m not driving so maybe that’s a bad idea
I’ve got my migraine meds just in case. The one thing I am missing is some snacks. :-/ that might prevent me from being able to keep quiet. well, all I can say is, let the journey begin in t-minus 30 minutes. Wish me luck!
The news this week has been quite compelling for people as Angelina Jolie announced her undergoing a prophylactic double mastectomy to better her chances of not getting breast cancer as she tested positive for the BRCA 1 gene. There has been a lot of back and forth opinion pieces made about the choice she has made and as interesting and compelling as both sides have made it, it still comes down to this, having power to make the decisions YOU yourself have made for YOUR body. We cannot condemn someone for making a choice that was the best choice they made for themselves given the information they had presented to them.
It’s interesting, in the research that I have made there have been a lot of amazing and astonishing stories of women who chose to have double mastectomies as a preventative measure without even knowing if they had BRAC 1 or 2! At first, I can honestly say I was quite shocked and thought it was really crazy to do that but then as I see people writing about how avidly against preventative surgery they are I considered one thing, if it were me, what would I do? Honestly, I can say this, when faced with the possibility that I would have BRCA 1 &2 I did decide if my test came back positive that I would go through with the double mastectomy with reconstruction to ensure that I lowered my chances.
So, a little bit about these pesky genes. As reported in Wikipedia, Both BRCA genes are tumor suppressor genes that produce proteins that are used by the cell in an enzymatic pathway that makes very precise, perfectly matched repairs to DNA molecules that have double-stranded breaks.:39-50 The pathway requires proteins produced by several other genes, including CHK2, FANCD2 and ATM. Harmful mutations in any of these genes disable the gene or the protein that it produces.
Now, I know there is a lot of scientific speak there, so let me break it down for you, your family can carry this gene on either side or it can carry both genes and your percentages go higher for possibility of breast cancer or ovarian cancer. Now here’s the jist of what I have gotten from it and I can honestly say that this is my take and not necessarily correct so if you are reading this and a science person, please correct me in the comments so I can not go further in life being misinformed as the purpose of this blog is to spread the information and not misinformation! OK, so, you have one of these 2 genes, it makes you more likely to be affected by a tumor that would have cancer in it. Now this is not to say that you are walking around with cancer in your body because that is not what these genes tell us, it tells us it gives you a lower chance of resisting a tumor, or suppressing it, as the Wiki reference states.
So the Wiki-reference goes on to say: Because humans have a diploid genome, each cell has two copies of the gene (one from each biological parent). Typically only one copy contains a disabling, inherited mutation, so the affected person is heterozygous for the mutation. If the functional copy is harmed, however, then the cell is forced to use alternate DNA repair mechanisms, which are more error-prone. The loss of the functional copy is called loss of heterozygosity (LOH). Any resulting errors in DNA repair may result in cell death or a cancerous transformation of the cell.:39-50
Yeah, I know, more science speak but it does help us get to the point. If your body comes in contact with a mutation, whether it be from environment, exposure in life, diet, etc. it is inherent that your body will resist as if there is an error code in your operating system. Kinda like when you go to a website and it says ‘File Not Found Error 404′. This means the body is not capable of giving it the good fight because it kind of goes into a hands-in-the-air screaming and running in circles mode and just does anything it can. Maybe even throwing oil on that kitchen fire making it worse, we really don’t know how it will react.
So, with all this science speak we come back to the decisions of women, and men, they do get breast cancer! What is the right choice for YOU if you are faced knowing you have both of these genes or even one? THAT my friend is up to you! YOU are the person who can best decide what that means you should do. After all, there are doctors out there on both sides of the fence on this one. All I can say is, I was worried enough with my family history to make the choice to get the genetic test done and move on from there. Never mind that none of the women in my family had the mutated genes, it was a sort of relief for me that I was not THAT much higher in the probabilities. I made my informed choice before I knew of the genetic mutation not even being in our family of breast cancer but it was MY choice to go forward and not have surgery simply because I felt it the best choice for me at that given time.
Another interesting point made from Ms. Jolie’s interview is the cost and patent on the genetic testing for women across the world. When I took the test in 2006 it was $3500.00 that was quite an expense and I can’t imagine it being a frivolous expense for anyone. The average person cannot afford this, and sorry, but the insurance companies will reject the test many times before it will agree to pay a portion of it. That was my experience. There was a Supreme Court case against Myriad, the company holding the patent to the BRCA 1&2 gene’s and the biggest message that this case brings to me is that a big company can actually be holding a patent, which by definition means:the exclusive right granted by a government to an inventor to manufacture, use, or sell an invention for a certain number of years. http://dictionary.reference.com/browse/patent?s=t
So, how does a company own the right to a gene that naturally occurs in the body? How is it that, in this court case many other companies have testified to the fact that they can produce a cheaper test ($35-40) if allowed to use the technology that Myriad is controlling the rights to? I really get upset when big companies bully little companies because they are so scared of letting go of the reigns. A simple business tip? If you give stuff willingly you get things in return 10 times because you are doing the right thing.
Now, don’t get me wrong, I don’t believe that a company should give it all away, but when another company collaborates with you to create a newer and streamlined product for the betterment of man/womankind, HEY! Wake up call! I think it ends up being a win for all parties if you allow it. I would proudly use the name Myriad instead of how I feel now which is that they are mud.
Let’s hope the news allows for a change in mindset. Let’s hope that Myriad stops grubbing money and allows for the change to happen, without a lawsuit! DO THE RIGHT THING! I can’t even get a copy of my gene test because Myriad will not send the results to anyone who is not a doctor! Cheers for that Myriad!