Bena Roberts

Finding out I have metaplastic breast cancer

I have spent most of my life being very healthy.  I used to pride myself on never having a sick day and I used to laugh in the face of people that were sick and miserable.

Finding a lump on my breast

This sadly changed on October 11 2009.  As I walked my children to their wrestling class with the dogs I felt a funny pain in my breast.  I thought nothing of it until my Dachshund Dotty, decided to run away and I chased her.  When I ran something painful and  unfamiliar was juggling around in my bra.  Of course, I thought it was an acorn and Autumn was to blame for my discomfort.

When Cancer Hits

When Cancer Hits

When Cancer Hits is one of many books on cancer.   But it is one of the few that does actually deserve an accolade.

I am surprised that I feel that way, because when I received the book – I was nervous about reading it.  When you live cancer and you have chemo, five operations and radiation… you read books and you try and be positive but the books that you read gloss over the bad bits. 

Or the alternative is that they blame you for everything you did wrong in your life (you drank too much, you ate too much sugar, you ate too much salt…).  Then you get more depressed and never finish them.

 

Today I ran 10KM and then cried like a baby

 
I can remember when I couldn’t run 100 meters.  During chemo – I couldn’t even complete Wii Fit exercises.  But earlier this year I joined a running club (www.zeitfuersport.com) and today I ran 10KM in 1 hour 11 minutes (www.jogandrock.com).  It’s not my best time – my best time is 1 hour 8 minutes.  But hell, it was GREAT and I feel great and I ran with some dear friends (see pictures).

Refreshed after an amazing holiday

2009 was a year of sickness for me.  2010, I was so drugged up on chemo and steroids I just can’t remember anything.  2011 was OK. But since my trip to the states in June/July it’s become a fantastic year.

 

Please donate to my metaplastic breast cancer charity

As the founder, Editor and more often than not the CEO of GoMo News, I have met some wonderful and remarkable people.

 

Do you get your periods after brutal chemo and rads?

Unfortunately, I know the answer to the question above.  The answer is yes!  15 months after my last period and after months of hot flushes and my belief I was going through the menopause.... I started again.

Yuck. It is hell and I know I should be rejoicing my woman hood but can't bring myself toas everyone thought that I was in the MP.  ARGHHH!

Even worse, when I was so sick, I told Ian that if my periods came back I wanted another baby.... fingers crossed he forgot that!

Oh! People are still rude even when you tell them you have had cancer – bad Landrat Dieburg!

I am fuming.  I have never been treated so badly in all my years in Germany and it is shocking.  As all of you know I lost my hair during Chemo and was stopped at the border control.  My passport is not expiring yet; but I was advised to get a new one before I travel.  So, I sent it off to the passport office.

One year after the end of chemo... still bald, but fit!

My sisters family and my family went to Italy for a lovely Easter break.  I can’t remember Easter last year I was spaced out from my sixth chemo and it was hell. 

 

Rest in Peace Heather Wettig-Zenz

 

It breaks my heart to tell you that my cancer friend Heather died.  I have asked you to pray for her a few times on this blog and I thank you for all of your thoughts and love.

Quick update, big decisions, new life challenges

It’s been ages since I updated everyone.  So firstly sorry.... But secondly – no news if often good news and in this case it is.

I have really been focusing on healing and moving forward with my life.  It has been an extremely tough decision but I have decided to try and sell my news publication GoMo News.  I am not sure if I am going to actually sell it but right now even if I don’t it’s been a great ride.  I enjoyed it while it lasted and ... I suppose the travelling and long hours made me quite sick(!) – so maybe it’s best to move on to something less stressful.

So I got an offer to do some writing.  Only a few articles a month – but it’s on fashion and technology or social media.  So, completely opposite to my existing writing and scope; but different enough to be a lot of fun.

My first article for Ermoumag.com has just been published so please check it out here!

 

On top of that I have started running!  I know, I think its hilarious too –but why not.  I wanted to do something so I signed up for Jogandrock.de – its the Bensheim half marathon in September.  There is a 20 week course that goes with it and the trainer is a nice Spanish guy but a bit tough.  The first week was OK but now we are running nearly 4KM for homework already which is a bit crazy and surreal considering I have never run before in my life.

 

I will keep you updated on my attempt and try to blog more often.  Thanks everyone for the continued support and love.

I did it! and Kris Carr Crazy Sexy Diet book review

I am intoxicated on fresh air and veggies!  I did it.  After a very long seven months I have hit my first goal weight!  I am now 59.9 KG or 9 stone 4 or 132 pounds!  It feels good.  But I am sure I still have a good few months to go before I hit my dream weight of 57 Kg or 8 stone 12 or 126 pounds.  But lets see.  I feel great and I think that I can do it.  I just need to start going to the gym a bit more and add an extra yoga routine to my activities.

 

So, my dear cancer BFF recommended that I buy Kris Carr’s book Crazy Sexy Diet – eat your veggies.  I have to say, it was a great recommendation.  I think the book is fun to read and encourages cancer patients to stay healthy and get motivated.  However, I also sort of hate the “feel great about yourself part” in the book. 

Why?

Well.  However much I like Kris Carr and her writing.  I hate her, because she never had chemotherapy.  I know this sounds very cruel and not very Hindu like – but I can’t help it.  She managed to mediate and eat what she wanted and control her cancer which is great.  But I went through chemo and loving yourself and enjoying sex (one of the things that Kris gets hung up on in the book) isn’t easy after six months of chemo and 37 rads plus five operations.

Now, don’t get me wrong.  I still love the book.  But I think that finding inner peace after chemo will take a bit more time and effort.  Even yoga and meditation can cause pain in my arms where my wounds and scars are.  It’s not the same chanting Sat Nam in front of your temple sitting on a haemorrhoid  ring!

But after reading her book; at least I am trying.  I have turned vegan and am actually enjoying it.

I am trying to motivate myself to write a book on healing and getting through chemo organically to offer pain relief and support to us cancer patients that are still suffering the cruel side effects of chemo.  It is hard but there is nothing out there that really helps us.  Everything I have learnt has taken hours and hours of reading and going to the chemist and shaking doctors!

Help me create a metaplastic breast cancer charity

I have finally decided what I want to do in 2011. I want to create a charity for Metaplastic Breast Cancer and raise funds for our members and a research team. In Germany I need to raise about EUR 50,000 to be official. Or to meet the criteria for a registered German non-profit. This is now my aim and my goal. To help me canvass for support please join my cause on Facebook. I will also be creating a brand new website with a donate button so I really hope that anyone that can will join the cause and later donate some money. If we get 50,000 people to donate EUR 1 - we will have met our target. Please help, Bena XX

Another metaplastic breast cancer death, RIP Rae Burton

With regret, I need to inform you that a metaplastic breast cancer friend Rae Burton died on January 15, 2011. I first heard from Rae when I started this blog about Metaplastic Breast Cancer. She also kept a blog that you can read here: http://lifesenseintentions.blogspot.com/

Last time I spoke to her in August she was on her 15th or so chemo. I asked her how she was coping and her response: "at least I am alive". My love goes out to this remarkable woman. She left me some great comments on this blog and chatting to her gave me strength... All the best Rae.

My first metaplastic breast cancer friend dies and its tough

2011 has seen two of my friends die of cancer.  They both passed on January 3rd.  The first was Faramaz Solemanie, my husband's best friend's father.  I am glad I saw him before he died and I am upset but I know that his time had come.  The second, I never met.  But her death has penetrated my soul.

Her name is Chizuru MacMurray and she had Metaplastic Breast Cancer like me.  We met via this blog and the Facebook page I created.  She is the first girl to pass on the site and from me starting the FB page; we now have 80 members and 68 have metaplastic breast cancer.

Having some one die makes you realise how precious life is.  It makes me realise how valuable my life is and how I want to keep on living. I can't stop crying and thinking about Chizuru and I wish I had met her or could have helped her more.  We are about the same age and she is someone I probably could have been friends with.  But I never got the chance to develop a deeper friendship and now its too late. 

 Death makes you vulnerable.

This is the note I just wrote to inform the group.  Again, I feel I failed as a writer.  I wanted to say more and be more powerful - but death is a word killer. I didn't know her, but I know she suffered with Chemo and then the chemo didn't work and I know the pain she was in and I feel so bad for her. Please pray for her soul and for her husband.

 

With regret, I would like to inform all of you that our dear MBC friend Chizuru MacMurray died on January 3 2011. 

Chizuru didn't want to suffer anymore.  Her parents and two sisters arrived from Japan to be with her and then she died 36 hours after they arrived.  She was at home with her husband Craig and his parents too.

My heart goes out to Craig who has been posting here and looking after her.  Craig - I am SO sorry for your loss.  To honour Chizuru I am going to try and create a page linking from this one in Memory off Chizuru and other metaplastic breast cancer sisters that pass.  It is only a small thing but I wish I could do more for Chizuru and all of us.

God bless Chizuru, Craig and all of us.  Warmth and love, Bena

 

 

Cancer strikes but it is the chemo that has the last laugh

The term “it’s a cancer” is often used to describe the fast spread of the disease or similar. Only when you get bad news do you realise that cancer really is a killer and the disease is vicious. But on top of that, there is confirmation that the current cure for cancer is also more of a life lengthener than a cure.

 

 This morning, we received an SMS from our dear friends in Emden, north Germany.  My husband’s best friend Cyrus wrote, “if you want to say goodbye to my dad; now is the time”.

 

Feeling proud of myself and back in the newspapers!

Your life has many narratives.  My story seems to change and from having no time to participate in my kids activities because I was so sick; I have now become part of the parent teacher association at our school and also organised a fashion show for the Partnershafts Verein in Seeheim. 

 
 

So take a look at me now....

One year ago today I entered hospital to have my lymph nodes removed and my breast margins cleared.

I felt as if my world, my life, my love life and everything else was over for me. I thought I was going to die and thought about jumping out of the window.

It wasn’t selfish. At the time, I didn’t want my kids to watch me die; I wanted them to remember how I lived.

 

 

But that is what happens to you when the cancer bomb descends.  Your emotions make for a Molotov of fear, rebellion and accidental Hedonism.

 

One year on, I want to say – “take a look at me now!”

I will never be totally in the clear, I have a very very aggressive and bad cancer and I will have to be on my toes forever.  I still have a 5cm lump on my liver that is being watched as well as some other problems – but hell.... with what I have been through that is a walk in the park!!

Last night I managed to organise an Indian fashion show with 18 girls and with over 200 visitors in Seeheim.  It went amazingly and everyone congratulated me.  Hardly anyone knew I had cancer and it felt great.

If I can do it..... so can you.

Don’t give up. Bena