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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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Guest post by MD

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.   She gave me permission to put it on my blog.

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.

the photographer captured the moment

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.

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A week of it

A fairly eventful week although chemobrain is doing its utmost to raise me to new heights of forgetfulness.  OH and I were supposed to go to a meeting last Wednesday night, quite an important one, but because I didn’t write it on the calendar – we didn’t go.  OH is so used to me keeping track of things outside his work that he doesnt remember things  either.

I think I am going to have to keep a diary of what I have done as well – for the life of me I can’t remember what I did last Thursday.

It frustrates me so much that new information that it is important for me to remember doesnt get retained. but I can remember when my ex-brother-in-law’s birthday is off the top of my head or some other random trivia that I learnt years ago.  Its the stuff I’m learning now, the stuff that is important, that isnt sticking.

Although remembering old times can be fun as well.  Last Friday OH and I went out to spend time with C and L that are moving.  Amongst the other people gathered to wish them well was my old boss when I worked at the same place that OH still works (yes folks, it was a workplace romance that got me and OH together).  J and I had a great time catching up – he still sees OH regularly at work so keeps up with all the news – but for both of us it did not seem like over 25 years had passed since we were workmates.  Geeez I must be getting old.  I also caught up with a couple of other people who I hadnt seen for a while.  Unfortunately I had to break the news to them that “gertrude” had reappeared.

On Saturday YD and I went to the movies, and for a short wander round the mall.  Where it usually has been her that curtails the wandering, this time it was me.  With my xeloda-affected feet  I just cannot stand or walk for too long.

YD stayed the night but Sunday was a quieter day at home.

Monday was Uni as usual but I ran into problems when I found out they had changed the bus route.  Where in the past I could hop off my train, walk to bus stop and catch a bus that dropped me outside the campus,  now the new bus route nearest stop is nearly 1 km away.  Not good for my feet at all.

Tuesday we had our oncology assessment, saw one of Dr H’s underling Dr G,  the plan is for me to carry on with the xeloda,  it has been effective my tumour markers have dropped to nearly normal, my liver function tests are now within the normal range.  We talked about whether or not to do another scan to check on the size of the tumours and the thought is at the moment to just go on the blood tests and avoid the extra radiation from the scans for a while.  At the moment the plan is for me to stay on the xeloda but possibly reduce the dose so my feet are more manageable.  OH wanted me to minimise the effect Xeloda was having on my feet so they didnt decrease the dose – both of us worry about a lesser dose being less effective, but if I am on the xeloda long-term I need to be able to be on my feet more than I can manage at the moment.

As the doctor said we will try and keep me on the xeloda until it stops working.  I will recheck with Dr H when I see him next that this is the best plan.  One thing I didnt like about Tuesday’s onc. visit is that it reemphasised the fact that they have the expectation that the xeloda will only be effective for a certain amount of time.  They don’t mention finite times & dates but they are there in the expectation that I will probably have a couple of years at the most, more likely much less, on xeloda; and it just reminds me that I probably have a very finite time left.

Tuesday night I had my second Aqua Aerobics class with OD and although I am finding them quite challenging and feel totally worn out after doing it, I can feel it having an effect on my body, my muscles are getting a work out that they desperately need and its giving me a good cardio workout too.   I am feeling not quite as lethargic from the fatigue as I was.  I have to admit I am sleeping very soundly on a Tuesday night after the workout.

Today is Thursday – I’m going out to lunch with a friend today, and tomorrow before going to Uni I am meeting up with a fellow BC lady who I happened to meet by chance through a random game of Scrabble on Facebook.  She lives not far from me and also has mets – hers are to her lungs.

As you know from previous posts my fingernails have never really recovered properly from dieback that they suffered from my first chemo so to cheer myself up and in keeping with the ‘Look good, feel better’ philosophy  I wear nail polish.  Last week I found some cute ‘nail polish strips’ that while they are more expensive than painting your own nails are worth it for the convenience and the patterns.  A great pick-me up – flowers on my fingernails

flowers on my fingernails

I’m trying to do shorter blog posts than this but didnt know where to  break this one into smaller posts. – will try harder next time.

Exercise

Today I am not having much…

But last night I went to ‘Aquarobics‘ for the first time.  The side effects of Xeloda on my feet preclude me from doing the small amount of exercise I was getting by walking and I could feel as well as fatigue, my fitness levels slipping away through lack of exercise.  Aquarobics provides a place for me to get that exercise without putting more pressure on my feet.  It is quite a small group and the instructor and I had a quick chat after class about what my limitations were and if I go regularly she will help me structure the exercises to suit my abilities.  OD has decided to come with me, to add aquarobics to her keep fit measures (for her to get into shape for her wedding next year) but also to act as my conscience and encouragement to make sure I go regularly.  I really enjoyed it but the front of my thighs and other various muscle groups definitely made it known that they hadn’t had that much of a workout in a long time.

Today I am having a quiet day at home – the first day at home since last week. (Friday/Saturday – ‘Extraordinary’ experience, Sunday – funeral and catching up with other friends, Monday – Uni, Tuesday – Sweet Louise meeting, Counselling, and Aquarobics)  So I am having a bit more a quiet time, catching up on uni readings, writing blog posts and generally resting.

Thats the thing with dealing with cancer and treatment and symptoms and side effects.  You need to try and balance resting because of the fatigue, with getting enough exercise to not totally lose your fitness levels.  It’s quite hard to get that balance right but I’m giving it my best shot.  I try to listen to my body and give it what it needs.

Unexpected

As well as the amazing events of Friday and Saturday, we had a more sober event to attend on Sunday afternoon.  Last Wednesday, OH found out one of his  close workmates was in hospital with a heart problem.  He had only just come home from work and told me when we got a phone call to say he had died.  This guy had been part of our lives for close to 30 years.  His daughter went to school with OD, OH and he used to share rides home from work occasionally, and they worked in close proximity.  His funeral was held on Sunday afternoon.  His death has been a real shock to OH and his workmates and even to me and the rest of the family.  R and his family were just always ‘there’ – as I said to his wife V, even though we didnt hang out together apart from the occasional work function they were always just part of our wider world.

Through dealing with the death we also reconnected with another of OH’s old workmates, now retired, who has been dealing with breast cancer for about the same amount of time as me who has now developed mets to her lungs and we spent the rest of Sunday visiting her.

In some ways R’s death has helped me put my situation into perspective after feeling a little low about my 3 year  ‘cancerversary’.  As OD put it,  although I have cancer and the prognosis isnt good, I’m still here and we have a chance to deal with it as a family.  J, R’s daughter, never expected to be attending her fathers funeral on Sunday, so in a lot of ways OD considers us more fortunate than R’s family.

I am still here and as I said when I went to counselling at the Cancer Society yesterday,  part of the reason I am coping so well is that I embrace life, considering myself to be ‘living with’ cancer not ‘dying from’.  That day may come but it is not tomorrow, or next week, or next month, or even next year.

Extraordinary

At the afterparty

Unbeknownst to me OD nominated me for a competition run by Auckland Theatre Company where people nominated women who they considered extraordinary.

click here to see ODs nomination

To my surprise a week and a half ago she popped round to tell me I had won.  The prize consisted of a pampering session last Friday afternoon where I had a facial, manicure and my hair blow-waved at D’Aguiar.  Followed by checking in to a beautiful boutique hotel in central Auckland called Hotel DeBrett.  Dinner in the hotel restaurant, including meeting the owners of the hotel and then picked up and chaffeured to the theatre by the owner of a luxury tour and transfers company ‘A Perfect Welcome’. At the theatre I was given tickets to  the the opening night of Auckland Theatre Company’s production of “Calendar Girls” and an invitation to the afterparty where some of the stars of the show were happy to be photographed with me.   I was also given signed programmes where all the actors had written personalised messages.  Everybody I met during this experience was extremely welcoming and genuinely friendly and I had an absolutely amazing time.  We then spent the night at Hotel DeBrett with a complementary breakfast on Saturday morning.  A truly unforgettable 24 hours.

When I found out I had won I felt quite strange about accepting this prize, because I don’t perceive myself as that extraordinary.  Women I know in the international Inflammatory Breast Cancer ‘sisterhood’ are doing so much more than me.  There are women who are  battling metastasis like me who are still trying to be really hands-on mothers to their small children and acheive other things that they feel are important not only for themselves but for others.  Some are still trying to work full time as well as parenting.  I, in contrast, have only a 23 yr old daughter still living at home and am doing only two papers at university.  My husband is doing most of the household chores as I , by nature, am actually more inclined to be a slob,  and he is giving me the freedom to spend the energy that I do have on things that I really want to do.  To me that seems to be almost more selfish of me than extraordinary.

Likewise the women that are my best friends at university are women who see a need and automatically work to fill that need, they don’t do it for accolades or to win competitions but just because it needs to be done, and thats why I do what I do too.  I know a lot of women like that in the other circles of my life too.

To all the extraordinary people in my life – this prize is for you too.  I just wish I could have taken you all with me.

Bracelet update

I thought it would be a good time to update the picture of my ‘cancer bead bracelet’ on my blog header image but also a good time to remind myself and my blog readers what all the beads stand for

top row 'other achievements' bottom row 'cancer beads'

The bottom row have been significant events or signifying the end of  a certain treatments along my cancer journey

Bottom row: left to right: diagnosis,finishing taxotere chemo, hospitilisation for infection, finishing radiation, surgery, acheiving remission, finishing herceptin (1 year), recurrence to internal mammary node, finishing vinorelbine chemo, remission, liver metastases diagnosis (and the last bead is just a locking bead to keep them all in place)

top row: right to left: bead from YD the first Christmas I was diagnosed, trip to Cairns during 1st remission, trip to Christchurch, leaving my old job (2 beads given to me by co-workers to remember them by), finishing my first semester at uni, trip to Samoa,  Finishing my second semester of uni, having a normal Christmas, finishing my first semester this year, Dreamworld/Gold Coast trip (and another locking clip bead)

I wear this bracelet every day and both strands remind me of how far I have come in the past 3 years.  I hope to keep adding to the ‘other achievements’ beads for some time to come

3 years

Today is the third anniversary of the day I sat in a Drs office hearing the news that meant life as I knew it would irrevocably change.   This year it has hit me hard emotionally that 3 years down the track I am now battling mets.  I look back at last years post and the year before and they were so full of hope for the future being cancer-free.  Unless I get a spontaneous miraculous remission that isn’t going to happen now.  I havent lost hope entirely but this week, especially still suffering aftereffects and delays of trying to combine a holiday with  on going treatment,  has made me think about quality of life issues,  and I thought about the fact I now understand why some people choose to stop treatment and just concentrate on quality of life not quantity.

Now dont worry I’m not giving up on treatment yet but it is something I am thinking about for the future.  I am hoping I don’t have to make that decision too soon.

I have been honest with my uni friends that I am struggling this week,  that I’m not the usual cheerful happy ‘girl’ they know,  people usually percieve me as being very positive cheerful and optimistic and that is because when I am at uni, that is who I am.  Also out in public I come across as someone who is generally happy,  that’s because the days I feel yuck both mentally and physically I tend to stay home.  Like wise I become very quiet on the social media side of things, saying less via Facebook, Twitter and my blog.  “if you can’t say something nice, don’t say it at all”

Talking about saying something nice – the Breast Cancer Network did a really lovely story on the BCAC web video series.  The editor happened to be sitting beside me at the launch – in between two of us that had participated which I think made it even more real for her – the most recent issue isnt online at their site yet but I thought I would share a line in the article where she talks about me announcing in the video that it had spread to my liver.

“it was a sad and poignant moment when Jenny annnounced on screen that her cancer had spread to her liver.  Annabel’s had spread to her bones and Brian, the only man, diesd three weeks ago from metastasis.

It would be easy to have pity for them, but what I felt most was admiration, admiration for their ability even at one of the worst times in their lives to put their needs aside and do somehing to help others with breast cancer.  And it was clear that whatever else Jenny has lost on her journey it wasn’t her sense of humour”

Upfront U Kaiora Magazine issue#98 August/September 2011

And thats the thing – as long as I can laugh and find the joy in things … I won’t give up.  As long as I can feel I am doing something in the world …I won’t give up.  As long as I can be me… I won’t give up.

but part of being me is also allowing myself times to say 3 years ago my life changed irrevocably and quite frankly it sucks big time.