Tuesday, 30 October 2012

Breakthrough Breast Cancer Westminster Fly-in

When I walked into Westminster and confronted one of Stephen Pounds caseworkers. I went into a rant of look at my arm and why I had turned up late to our meeting. I was apologetic and angry because I knew I had to go back to the big CC hospital with a smile tomorrow for my 3rd cycle of chemo. I had waited one hour and twenty minutes to be told by a nurse your oncologist does not need to see you because your bloods are ok and you look fine. You are OK? 
This of course put hell into me because I have not seen handsome Mr L since he told me my veins were fine. I personally wanted Handsome Mr L to see the damage he has helped create just because he would not listen or pay attention to my notes.
Breakthrough Breast Cancer Westminster Fly-in has been an eye opener. 

The three aims they are focused on…

Quote:

1.     Increase awareness of the signs and symptoms of breast cancer through our Touch Look Check breast awareness message.

2.    Continue to drive early diagnosis and make sure eligible women have access to the best possible breast screening services.

3.    Make sure that everyone with breast cancer has access to the right treatment for their type of breast cancer at the right time.

I had to think of a way to put at least one of those aims which is important to me across. Being a diabetic I have what I call a MOT. This MOT involves having my eyes, circulation, full bloods and weight checked along with blood pressure. The full blood’s was how they picked up on my cancer.
Why can’t we bring in something similar when we have a smear to educate young women the importance of early detection. This would be ideal because you can then introduce them to the TLC campaign. As I explained to the caseworker for Stephen Pound you would not climb in a car without a MOT. Why then would you climb into your own skin? This young man’s eyes lit up and he replied you have got a point there.
Then I asked why can’t cancer patients in London have a free oyster card? Those with disabilities, over 65 and children do. I highlighted the importance of choice and how that card can help in easing the stress of travel. I explained how fatigue during treatment can leave you helpless. Again the caseworker took notes and agreed it would help.
Yes again to implement these aims cost money, but I have a target. I also mention about setting up something for those young women with children affected by breast cancer and the transition. During the last three years my young daughter has had a lot of questions and zero out let. Maybe it is me and maybe I’m not looking in the right places, but the journey of cancer treatment is not family friendly when it comes to reassurance. Our little soldiers are being bombarded with Kick cancer! And various other television campaigns and this had led to more questions from my young daughter.
On leaving the caseworker gave me a hug and requested I stay in touch. I said to him, look I'm ok, but those that are out there silently suffering aren't ok, that is what we are trying to point out to you. 

Thursday, 25 October 2012

Gossip and Cancer


With my youngest daughter currently I’m a protective lioness in the way I behave. With the whole bubble that we currently share it is more about routine rather than tears. Every now and then yes I do loss my temper with the day to day chores (i.e.) Sophia cleaning her room and doing her homework, which as a parent if we don’t keep up with children will neglect.
Meantime I still walk the mile and half to school and back. To me I must keep that part of our routine up. It not only help’s her, but me too. I’m not one for fuss; I’m a northern bird who believes in start how you intend to finish.
To me that finish line is just out of sight and no-one can help in speeding that process up. I’m realistic and say it as it is, not how others on the side lines so want it to be. And trust me I have heard enough and seen enough to realize the only words that count are mine, so when I’m told from another mother that had gone in my defense where she had heard a one parent say to another outside the school gates ‘What’s her problem?’ and my friends reply, ‘She is having a change in look or she is going through cancer. I’ll let you take your pick!’ It really did upset me. I had kept my bald head hidden from view once I had shaved. Sophia had made it clear she was not comfortable with the other children seeing my bald head, so I had been wearing woolly hats because the weather had turned cold, but today it was warm and my head was itching. I and another parent had decided to walk that mile and a half together up to the school and she said take that hat off let your head breathe. Don’t let others bother you, you look ok. Then she said I had a shaved head up until my late twenties sod everyone else. I said ok, but I insisted the hat will have to go back on once I reach the gates because of Sophia. At that I walk past these two parents with my bald head and the parent who approached me to tell me what had happened overheard the comment.
Yes I could do something to settle the gossip once and for all (i.e.) wear a t-shirt in bright neon lettering maybe, but that is what Sophia wants to avoid. She does not want to draw attention to what her mummy is going through. At seven years old she had already clocked up that adults are not very forgiving with their comments and their children likewise. She had gone through a year of hell last year at school due to bullying and things had just settled down. For me to draw attention to my situation could put her back to square one. She had learnt to put certain peers in their place and ignore, so for me to react would be to her detriment. I making a scene and walking away could put Sophia back to square one. One child had already gone up to her asking about me and saying your mum has get breast cancer after her mother had heard the conversation between me and the receptionist at the school. And Sophia smartly told her yes so what my mummy has breast cancer, so what! Sophia walked away to avoid getting into further conversation. She openly told me all of this when walking home from school the conversation starting with she had a bad day. I knew it would not be long before the playground conversation turned onto me and it could not be avoided. The cups of coffee, cups of tea syndrome, has begun. I just hope by my friend putting them two parents in their place does not have repercussions in the playground for Sophia. Otherwise the Lioness will have to come out bloody roaring and no-one wants to see that because I am not a southern softy.

The visual affects of cancer treatment we should not feel ashamed of, but before I started my treatment I knew someone who literally locked herself away whilst her eldest daughter took the responsibility of walking her sisters to school. Yes the treatment was partly to blame, but part of me wonders whether she may also be trying to protect her children from unwanted attention.


 Took Sophia to the premiere of  the new bond movie where she met director Sam Mendes... Yes it was naughty of me, but you only live once...

Saturday, 20 October 2012

Mr MP You Have a Meeting With Mrs M!

Finally I have had my portacath fitted ready for my next cycle of Chemotherapy. It took a phone message left on handsome Mr H secretary answer machine first to get the ball rolling. It is a shame that a cancer patient has to resort to such nagging methods to get the job done, but the thought of the alternative i.e. another vein collapsing is something I would not want to wish on my dearest enemy. 
On the 29th-30th I will be attending the Westminster Fly-in 2012. Previously I have always avoided such invitations, but after three years of sitting on the side lines gathering up bits of info about treatment and how my treatment has gone thus-far has led me to one conclusion. If I had a high risk pregnancy I would be receiving better care. Those are strong words, but I have personal experience in such matters. My last pregnancy I had a team of individuals all I knew on first name bases and they were there if I needed them. I had a list of direct numbers to call if I had doubts or questions. There was only one grumble when an idiot who did not deal with my pregnancy normally sent me on blue lights to Bradford hospital which I can assure you was dealt with. In all the team of people I had made me feel relaxed and I trusted them which is important.
   
With my current situation my Macmillan nurse is in the big E hospital, while my Chemotherapy is in the big CC hospital. I was asked at The Maggie cancer center do I have a Macmillan nurse at the big CC hospital I said No!... And when discussing in detail about how I requested my nurse in the big E hospital if she could enquirer about the portacath after my first cycle her reply was she was not part of the big CC hospital. To sum it up it was all down to me to make waves to get the portacath fitted.

What infuriates me about this whole situation is some patients don’t have the energy to ask. Some patients are so depressed with the whole situation they remain silent and except what is thrown at them. I have had the advantage of being around some very courageous strong women over three years and know I must DEMAND a portacath, but be polite and direct. Yet I still ask why? Why should I as a cancer patient resort to a phone call? After all I had told them well before my treatment started that my veins were naff. And it was written on my big E medical records that my veins were not obliging. This still left me with two veins damaged in my fore arm which are now extremely painful.

What people don’t understand about me is I am the type of person who will not make that phone call just to see what happens. I like to play with fire, but I knew this was not something I should play with.
To sum this week up Lord help my MP... I have a heap of look this is what I have seen and experienced and I don’t understand why this is happening in the NHS???? 
I have witnessed the pros and cons of having an excellent support system. Why is a high risk pregnancy so different to having cancer except there are two lives not one involved?
Yet a cancer patient has to except the cards and not moan... Well sod that! Sorry Mr MP you is in for a long ride with Mrs M! 

Friday, 12 October 2012

Relax in Chemo-land Ha!

My chemotherapy has had to be altered to a lesser dosage because of the white cell count, but on my second cycle they still had to use the veins in my hands because the request the chemo nurse mentioned on the first cycle was never forwarded on or in my notes. The second cycle took over two hours to complete because the vein started to get irritated. I was determined to get this second cycle done, so insisted we continue with the vein they had access too. To me it did not make sense using a different vein while there are still two tubes on the table and the next vein might not even play ball either. The nurse was not happy about doing this because you could clearly see my vein was not happy, but once I had the 5-fluorourcil, epirubicin and cyclophosphamide I could get out of the hospital and chill.

My second cycle of chemotherapy and a Neulasta injection the next day to boost my white cells done. Oh the joys of the breast cancer lottery!. Thankfully the registrar oncologist as requested for a chest portacath to be fitted. It is just a shame it has taken this long to actually listen to what I have been saying from the very beginning, but I was advised if I hear nothing from the big CC hospital to ring them. They say you should relax during this treatment, but by the looks of things there is no such word in chemo-land.

Tuesday, 2 October 2012

Guest Blog 'Writing to Heal' by Diana M. Raab


A few days ago Diana contacted me about doing a guest blog. Of cause my curiosity wanted to investigate this women’s story out even further.  As a breast cancer survivor you go in search of solace or meaning. And that is how stories begin because you can upturn many stones especially when we start to ask questions. I found Diana’s story sad, but also rewarding because she turned a negative into a good positive. By turning to the pen she found a way of expressing her very personal thoughts. 'Healing with Words' to me is exactly what I am trying to do with my blog. By typing out my thoughts and opinions I am expressing my inner thoughts which normally would be hidden from view. This alone is a therapy that has its personal rewards because you can look back and find solace and understanding within those words.

Thank you Diana for your encouragement and good luck with ‘Healing with Words’

Sarah M xx

 
 


My writing career began at the age of ten. Seated in my walk-in closet, I wrote about my feelings in a journal my mother gave me to help me cope with the loss of my grandmother who had committed suicide the day before. My parents were at work and my grandmother who lived with us,was looking after me. I knocked on her bedroom door to ask if I could go swimming in a friend’s pool. She did not answer. With a child’s intuition, I sensed something was wrong, so I scurried down the hall to phone my parents at work.

Many years later, I learned two things about my beloved grandmother, the woman who raised me. I learned that she ended her troubled life by taking an overdose of sleeping pills and that like me, she found solace in journal writing. In many ways, my grandmother has been the primary muse behind my own writing career.

Now, more than forty-five years later, I remember my first journal as clear as the last time I locked it up in my desk drawer. It was a maroon hard-covered book with a protective plastic sheath. The unlined pages were crème-colored and on the top of every other page was a quote by the prophet, Khalil Gibran. Each day his words inspired my own, which I wrote with a green fountain pen. I deliberately chose green; it must have been a comforting color for me.

My grandmother experienced a lot of pain but she also knew that writing about it helped her survive. While growing up in Galicia, Poland and in the midst of World War I, she lost both her parents to cholera. She had to fend for herself and her eight-year-old sister. Eventually, she immigrated to the United States and made a life for herself.

Many years after she passed away and when my parents were preparing to move from the house where we all lived, they discovered her journal in her closet. I devoured each and every word. The void in my life created by her death became more intense as years progressed, especially when I had severe health issues to deal with, like having breast cancer at the age of forty-seven. My illness and finding this journal inspired me to write a book weaving both of our lives and common interests and strengths. Although at times the writing was painful, it did bring me close to her once again and helped me more clearly understand the magnitude of her many hardships.

The book is called Regina’s Closet: Finding My Grandmother’s Secret Journal and was published in 2007. My second memoir, Healing With Words: A Writer’s Cancer Journey also stemmed from a painful place. This book began on the pages of my journal, and started as my personal cancer experience. As a nurse, I decided to develop it into a self-help book for other women to write their story. At the end of each chapter there are journaling prompts, and the book is also interspersed with poetry written during my cancer journey. Reading and writing poetry is healing. The book’s appendices have more writing tips, as well as listings of helpful organizations and support groups around the country.

Journals are a productive way to vent both small and large issues, such as problems with your boss or the death of a parent. It takes a great deal of energy to be angry at someone; it’s much healthier to drop it, as one would a suitcase full of trash. Holding grudges is unhealthy and certainly quite heavy! Once you are able to forgive, it’s easier to gravitate to all the good things and joys in your life.

Journaling is a cathartic way to spill your feelings out on the page rather than on the person. My attitude is: “Direct the rage to the page.” I have a writing colleague who says, “If it hurts, write harder,” and for years those words were posted above my computer, until they simply became a part of me.

In the journaling classes I teach, I remind my students that they are not being graded on their journal entries and they should write whatever comes to mind. I stress that there’s no right and wrong way to journal and that they are writing for themselves, no one else.

James Pennebaker, the author of Writing to Heal says “Writing dissolves some of the barriers between you and others. If you write, it’s easier to communicate with others.” He does have one rule that he calls, “the flip out rule,” which advises that if you get too upset when writing, then simply stop. Pennebaker believes that there’s a certain type of writing that erupts when we’re faced with loss, death, abuse, depression and trauma.

Whether affected by change, loss or pain, finding the time to write is critical to the healing process. Some people prefer to journal about their experience, while others may choose fiction or poetry to help them escape their own reality. Each writer must garner the genre most compatible with them, the one which they find the most liberating and empowering. In the end, that’s what it’s all about.

 

Some journaling tips:

 

·         Find a quiet uninterrupted time and place to write

·         Choose an inspiring notebook and pen

·         Use a centering ritual (light a candle, play music, meditate, stretch)

·         Take a deep breath

·         Put aside your inner critic

·         Date your entry

 
 

by Diana M. Raab, MFA, RN