Family commitments

Cross posted from ‘Get out Gertrude’ by Jenny (jaydub26)

YD although she is an adult is diagnosed with a partial chromosome deletion which has led to both intellectual and physical delays so she operates at about a 5-8 year old level for most things

Easter was also YD’s 23 rd birthday so we had her home for 3 days/ 2 nights. On the Saturday we  shopped for new clothes (birthday present from us as it was the only thing she really needed) then went out to dinner at a mongolian BBQ restaurant where you pick and mix your meat, veges and sauces and then it gets cooked for you – YD loves the pick and mix part of it.

On Sunday OD took YD to church while I prepared clues for the Easter Egg hunt – family tradition for YD

one of the 17 clues…

Seeing Sunday was also YDs actual birthday – MD cooked her special pizzas for lunch and she opened her presents then OD, YD, C (our ‘French daughter’ ) and I went to the movies for the afternoon.

During Easter weekend OD also moved house she now lives in a nearby town approximately 20 km instead of in the same town as us.  So on the Monday YD and I went to see OD and R’s new house and explore the town,  which is the town I grew up in from the ages of 10-18, it has changed a lot. By the time YD went home on Monday night I was fairly worn out and spent the rest of the time before chemo on Thursday recuperating.

Last weekend was OD’s bridal shower (and hen’s night but I didnt attend that) – 5 weeks now to the wedding.  I have not been a very active ‘Mother of the Bride’ but was glad I was feeling well enough to enjoy this.

I have also been helping C with her uni assignments.  As English is her second language she sometimes needs help understanding what an assignment requires of her. and as a student of the University of Auckland myself I have been able to explain what they want and explain things like APA referencing and things like that which is not something she has had to use in getting her degree in France.  I also read over her assignments and make sure they are reading smoothly.  She writes well but sometime french syntax creeps in or she writes something that while technically correct is not the way we would write it in English so I just help her with that sort of thing.

My identity since my daughters were born and especially with being a ‘stay at home’ mum for so long , albeit with being very active in volunteer work, has been first and foremost ‘a mum’ and it has been something that I have stuggled with since diagnosis.  Even though the girls are grown there are times they have needed me and I have to weigh up how much I can do while still looking after myself through treatment.  I have had to work through feelings of guilt that I am not doing enough for any of them and knowing that I, or my condition, is  the cause of a lot of the stress in their lives pains me greatly but there is nothing I can do other than try and be the best mum I can be under the circumstances.

At the beginning of April I went to a creative writing workshop run by the hospice in conjunction with the ‘Whats on your plate’ exhibition being held at the Papakura Art gallery.  This was both a visual arts exhibition and an interactive written word exhibition with creative writing workshops being held with various community groups and pieces from each workshop being displayed as part of the exhibition.

This was the poem I wrote as part of the workshop and I have permission to put it on my blog

On my plate

The mixed vegetables of my children’s needs

Stir-fried together but each with their unique flavour

Adding to the mix

They need different seasonings

And none can overpower the other

How to spend the right amount of time cooking

So they will all come out crispy and delicious

Not limp and overdone

 

And how do they sit on the plate

Alongside the staple rice of my relationship with their father

The stew of my cancer treatment

And the garnish of my university studies

 

The different tastes and textures

Fit on my plate

My life is delicious

©Jenny Williams 2012

‘What on my plate’ creative writing workshop with Totara Hospice South Auckland in conjunction with ‘Whats on my plate’ Exhibition on at Papakura Art Gallery

Grave matters

This post is cross-posted from ‘Get Out Gertrude’

A week and a half ago, I took YD to visit the graves of her Poppa (OH’s dad) and her godfather K, both of which had passed away in 2000.  It had been one of the things on the list of things we had written earlier in the year of things she wanted to do when she came home for the weekends but we hadn’t got round to it until now.

I had a little bit of ulterior motive taking her this time, with the progression of the tumours in my liver and no guarantees that the last couple of chemos we have got to try will give us control for much longer, there has been more thought, and talk, about the virtually inevitable outcome to this story.  As YD lives away from home in a residential supported living environment to a certain extent she has been shielded from the worst of the chemo side effects and we have been able to keep the whole ‘cancer’ thing a little less scary for her.  But this means that she doesnt know , unlike her two older sisters that this is likely to turn terminal at some stage in the future.

As an aside, I personally think in staging cancers now there is long term survival, control and even sometimes some sort of remission acheived in metastatic cancers (Stage 4).  There needs to be a stage 5 introduced where you have exhausted treatment options and are in palliative end stage.  Stage 4 could be seperated into Stage 4a (control and shrinkage of the tumours as to be negligible) 4b (stable no growth) 4c (progression but still treatment options available )

Anyway, in discussions with L, who is the manager of the houses in the residential service that YD uses, there has been discussion around how much we tell YD and L has suggested we tell YD more.  I feel that at the moment when things are so up in the air time-wise, and while I am still fairly active it would just confuse her to talk about me dying when she deals in very concrete concepts and time-frames.  We have told her with this latest news that the cancer isn’t going to go away and that I have to change medicines and the new medicine will make me lose my hair again.  She was quite blase about the news as to her nothing much has changed then in the last 3 years.

Taking her to the visits to Poppa’s grave on Saturday and K’s grave on the Sunday (they are buried in two different cemetaries, in opposite directions from our house) allowed to us to have a talk about death in general.  She knows that Poppa and K were buried whereas my parents, who died in 2001 & 2004 were ‘turned into dust’ (cremated).  She expressed a wish to be buried herself and asked where she might be buried.  She also asked where I would be buried when I die, which helped me make up my mind between burial and cremation for myself, as she expressed a wish to be able to visit my grave when I die.  So although YD doesnt know that my death is likely to be sooner than she expects, I feel like we have done some preparatory work around it.

After visiting K’s grave on the Sunday we went to a nearby mall that we had not been to for a while. We did some Christmas shopping and surprisingly bumped into people we knew.  Usually when we go out it is when YD gets tired that the outing ends.  This time we left the mall when my fatigue etc kicked in.  YD was very grumpy about leaving and coming home so in the car I reitierated how I feel sick and tired, because she only sees me when I am up to doing stuff with her I dont think she realises just how much my health is compromised.  I have warned I might get more sick and tired and that she can’t expect me to take her out all the time.  I think that is all the preparation I can do for now.

From my daughters perspective

Written by  Jenny jaydub26 and crossposted to Get Out Gertrude

I’m not the only creative writer in the family both OD and MD have talents in that direction too.

MD is finishing her degree in primary (elementary) school teaching and as part of that she has to take a general education paper, that is one not related to the other course papers.  She decided to do an English paper and one of her assignments was to write a short narrative essay on an important experience.  This is what she wrote – she got a great mark for it and I think it captures some of our family dynamics perfectly.  

Standing in the gardens surrounded by flowers, trees and shrubs, I thought of the photo on the wall at my parent’s house. It was old, the frame was starting to fade and the gold detail flake away. The photo itself was still filled of colour and I could still remember that day. Eighteen years had passed since that photo was taken, my mother’s hair once long and curly is now replaced with a short wispy cut and there are scars on her chest and neck from her endless battle, my dad has aged with time, and the three girls are all grown up. In the photo I was six and wearing my favourite blue dress with little black bows printed all over, my older sister was wearing a colourful jumper and her long dark hair tied up in a bun. My little sister YD standing in the middle of us two, a big smile on her face as we held her hands tight to make sure she stayed in place. Mum and Dad were standing behind us, you can’t see it but they were holding YD in place as well. It takes quite an effort to get a good photo of YD.

“Smile”, eighteen years later and I was standing there, holding YD’s hand so she stayed in place once more.  We moved around the Botanical gardens, having photos taken in various different areas. We stood by an old wooden gate with rusted bolts and nails, moss was starting to grow over the wood in patches and it sagged close to the soft dark soil on the ground. My black heels sunk slowly into the ground like an anchor lowering into place. Photo after photo was taken, and my smile started to fade and feel fake as we moved again to a new part of the gardens for a change in back drop. Then I heard it, the start of one of YD’s meltdowns. She grizzled and groaned, mumbling about how she doesn’t want any more photos, then it developed into a cry and scream.  I could understand her frustration; we had been taking photos for over an hour. People started to stop and look; this is nothing new to my family. I walked up to my little sister as she was hunched over sitting on a seat by a big native tree, and gave her a long and tight hug.
She cried and told me how she had been trying hard but it was boring, she does not like waiting, its part of having autistic tendencies. I asked her why today was important. Why were we getting photos taken? She replied “because the other photo is old”. If only life was so simple, we were getting a family portrait taken as we do not know how much longer we have together, because my mum is sick. YD knows mum is sick but she doesn’t need to know the severity until she has too.

As we walk towards the cafe to have afternoon tea, I put my arm around YD’s shoulders and tell her she did well today. I feel an arm around my waist, its warm and pulling me tight. The hand is pale and thin. I feel an immense amount of happiness in that moment, its YD’s hand. She doesn’t physically show emotions like that very often. We share a special bond my little sister and I, it’s not a normal relationship but its only one that we understand and I am her best friend.

Our first family portrait on the wall at my parent’s house shows a young family with an unknown future ahead of them. Life has changed in many ways, we have all grown up and moved out of home, my big sister is getting married, YD has lived longer and overcome obstacles we didn’t know she would.
There have definitely been some hard times. But the new portrait, it shows a family of adults that can overcome anything, that are still standing all together and holding YD’s hands so she stays in place. Family portraits show more then who is in your family, they show who your family, as a whole, are together.

Feeling the love

slightly abridged version of post on my personal blog by Jenny (jaydub26)

This was actually supposed to be the first of two companion pieces ‘Feeling the fear’  is the other one.  I had started to write this when I got the news from twitter about Sarah.  I no longer was in the right frame of mind to continue writing this post and wrote and posted ‘Feeling the fear’ instead. 

As you know I’ve been feeling a little sentimental and weepy lately.

But…

I feel loved.

Even when fear and darker thoughts crowd my mind, that is what pulls me through it.  I am loved by my family, OH supports me in everything I do, and my girls show they love me every single day.  Often it is not spoken but on Mother’s Day when MD put as her FB status ‘ I love you, Mum xox’ it made me feel really good.  Not all 23 yr olds have that relationship with their mother (and/or are willing to admit it to ‘the world’ on FB)  Likewise OD writes about me on her blog and I can feel the love there as well.  Even YD ends every phone call with ‘Love you’. 

Through this journey with “Gertrude”,  I have felt loved by my wider circle of family and friends and I think deeper and more meaningful relationships/friendships have developed because of it.

“And I loved deeper and I spoke sweeter,
“And I gave forgiveness I’d been denying.”

Are some of the lyrics from the Tim McGraw song I mentioned in ‘Feeling the fear’ and I think they have been true for me. 

I even feel loved and supported by my University classmates.  While I have made some very close friends there as well there is also an underlying general message of support from all my classmates. One of them randomly proclaims ” I love you, Jenny” and others show their support and caring in lots of other ways.  They are empathetic enough to know that we don’t talk about ‘Gertrude’ at Uni unless I bring it up, but show they care all the same without being overly sympathetic as I pointed out in this post.

I have a few older school or church youth group friends  from my teenage years like ‘the  MRD’,  R and K who let me know they are thinking of me and holding me close to their hearts.  (And this is 30 years since we were in high school)

I know everyday people love me, which for half my life I believed that not that many people would, if I let them see the real me.  Blogging has allowed me to show who I really am and I now know I am loved for being exactly who I am, warts and all.

Love and support has also come in the shape  of the internet, other IBCers and other Breast Cancer survivors that I am friends with through the IBC mailing list, our IBC facebook group, other Breast Cancer bloggers, Facebook and twitter users.  Through all these avenues we become real friends as close as any real life support group as we share such intense shared experiences. 

As Shelli of “The Dirty Pink Underbelly” blog wrote as a comment on ‘Feeling the Fear’ on “Get Out Gertrude” “:-“I wonder if it brings me permanently down, further and further down, as my search for support has turned to seeing friends die. ”  We run the risk, especially amongst those of us that are metastatic, of seeing these friends die.

But as Judy of “Just Enjoy Him” commented, when I crossposted the same post to “Mothers with Cancer” , about the loss of Sarah to our community:- “I am so very sad about Sarah’s death. Just so so sad. But I’m glad she was in my (online) life for the time that she was”. 

I totally agree with Judy. I would rather have these women in my life for a short time than not at all.  Having IBC and/or metastatic cancer can be a lonely experience, even if you are surrounded by friends and family that love you, because of the enormity of your situation, and that these other women understand.

Feeling the fear

this post is cross-posted from Get Out Gertrude by Jenny (jaydub26)

This post is dedicated to my friend Sarah who blogged with me on Mothers with Cancer, who died today.

We got to know each other through each other’s blogs and like me she was a bit of a twitter addict and we were also facebook friends.  Even though we never met (she lived in America – I live in New Zealand ) , through all these avenues she became part of my every day life – a real friend, and I will miss her.

 I had planned and written  this post in my head  already but with Sarah’s death, it makes it all the more real.

One of the reasons I don’t write more about advocating for change, education, research, a cure is because it requires me to quote facts and figures – statistics that in my every day life I try really hard not to think about. 

Sarah had metastatic breast cancer

The American bloggers I follow that went to the NBCC  advocacy conference  were given a presentation that gave some facts around that –

From The Cancer Culture Chronicles : In America 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease and metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year

from Uneasy Pink came a link to a video presentation they were given  (click on the link – I dont have the capability to embed video in my blog) that states in 1991 (in America) the deaths from breast cancer were on average 117 a day , today it still averages 110  ( I would imagine that adjusted and worked out on a per capita basis New Zealand deaths from Breast Cancer would be about the same).

 That is 110 ‘Sarah’s (somebody’s wife, mother, sister or friend ) dying every day from metastatic breast cancer.

My friends Susan at Toddler Planet and Elizabeth at The Liberation of Persephone both IBC survivors like me, also wrote about these statistics and how we needed to change the conversation from awareness to really finding a cure.

Especially around IBC those facts and figures are even worse.  In a recent article Dr Christofanilli, one of the leading experts on Inflammatory Breast Cancer said “most women in whom IBC is diagnosed eventually experience a recurrence and die from the disease—highlighting the need for further research.”(approximately 75%),  and “is the survival of women with IBC in the 21st century similar to that of women with LABC? In a retrospective review of women in the Surveillance, Epidemiology and End Results (SEER) registry, our group has recently shown that women with IBC who were treated between 2004 and 2007 in settings where a multidisciplinary disciplinary approach to treatment is considered standard of care, continue to have poorer survival outcomes when compared with women with non-IBC LABC”

Well the statistics pretty much suck, don’t they, for those of us with  IBC!!  We are living longer with newer targetted therapies  (5 year survival now 40%) but once we are metastatic that is based on  a control rather than cure model. At the moment we will, almost 90% of us of we that get metastases, eventually die of metastatic disease.

I live with the fear everyday that ‘the cure’ will not be found soon enough for me.  But I try not to let myself feel it – if I let myself feel that fear, I would not be able to function in my everyday life.  Be the wife, mother, student, friend that I want to be.

But sometimes I have to let myself feel it and face my own mortality. One of my friends sent me a song via email last week that made me feel sentimental and weepy for the first time since I found out about my liver. The song and the sentiment weren’t anything to do with my cancer but allowing myself to cry over it opened the flood gates and allowed me to be open to feeling the fear and other feelings I had been trying hard to suppress.  That song and two others were on my playlist a lot last Thursday and Friday and as I said to my cancer society counselor yesterday  I actually really liked the way it happened and I thought it was a good cathartic release and much more controlled than if I had let it build up longer.  It wasn’t like I let myself bawl my eyes out uncontrollably. I just let myself think about things and feel things and let the tears fall if they came.  I felt I was in a really good head space afterwards for letting it out. 

I have two songs I listen to when I want to allow myself to connect to those emotions. One is ‘The show must go on’ by Queen and the other while I am not a huge fan of country music is ‘ Live like you were dying’ By Tim McGraw  – both of them are about facing your own mortality and dealing with it, living the best life you can or living your life your way until the end.  Which is what I will try to do.

Don’t get me wrong, I don’t sit around thinking I am going to die anytime soon, but I just acknowledge what is the most likely scenario for my death.  That I will in most probability not live to be an old lady. 

Today I cried again, for Sarah, who lived her life – loving it, finding the joy in the photos she took, her dog Finny (of who she tweeted many pics), her three children and her husband.  Loved your spirit Sarah and hope I can handle things with as much grace and hope and love as you did.

Edited to include what Laurie pointed out in her comment below: it should be clarified that Sarah didn’t have IBC. Her cancer was, however, triple negative, which suffers from the same lack of awareness and lack of research funding as IBC and is (like IBC) also more likely to become metastatic than other forms of breast cancer.