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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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    No Princess Alone button

Here we go again

Now that we are all caught up with my activities over the last few weeks I can update you on my oncology assessment appointment (Wednesday) and my first Adriamycin chemo yesterday.

I had to go in early on Wednesday to get an ECG done to check heart function before the Oncologist signed off on me receiving Adriamycin – like Herceptin Adriamycin can affect the heart.  With Hercptin the damage is reversible, with Adriamycin its permanent.  I am pleased to say that I passed my ECG with flying colours.  With being off any chemo for the past month my tumoour markers have jumped another 30 points so it does make me wonder how much bigger the tumors have grown in that time, although my liver function are still fairly normal (Note: blood tests were done before champagne tasting – liver results could have been possibly worse after LOL)

I have been having some pain in my back and although the the CT report did not show any tumors/lesions in my ribs they did take another look as I was getting very localised pain around one rib.  What they have realised is that the tumour that is section 7 is actually extruding out of the surface of my liver and compressing the capsule around my liver that has nerves and blood supply up against my ribs in that area.  Because the nerves are getting pinched between the tumour and my rib that is why I am getting so much localised pain there.  I have also been having intermittent pain in my shoulder blade which I had put down to stress but they think that is also referred pain from the nerves around the liver as they share the same trunk nerve.  This makes sense to me as I have not had anywhere near the same amount of neck tension pain you would expect if the shoulder blade was purely tension related. 

I have been trying to get by with just standard pain medication, panadol and the like but have not been sleeping well as my back tends to hurt more when I am lying down so we have decided to start me on the opiod drugs – a slow release one just to help me sleep at night and some quick release ones for break through pain during the day.

I struggled on Wednesday night taking the first one,  I had hoped to avoid going down this path – and part of me didn’t want to admit I was in enough pain to need them.  I was also struggling with the fact that once I had my first Adriamycin on Thursday I was on the slippery track to losing my hair again.

While I am relatively OK with losing my hair – it isn’t anywhere near as bad the second time round, the fact is I have managed to get through the last two years although I’ve been on Vinorelbine and Xeloda neither of them have made me lose my hair so I haven’t obviously been a cancer patient.

The combination of the certainty that I am going to lose my hair again and the upgrading of my pain medication makes it harder for me to forget that that is what I am, and it also makes it more obvious to others.

I had an interesting discussion in the chemo room yesterday with the young woman in the lazyboy next to me – she has  metastatic breast cancer (triple negative- both hormone and her2- negative ) to her bones, diagnosed just a few months ago while brest feeding her baby who is now 7 months old – she has a 2 year old as well.  She is frustrated by peoples misconceptions that all breast cancer if detected early enough is curable.  Her tumour in her breast was less that a couple of centimeters but it had already spread to her lymph nodes, after her surgery when they realised how many nodes were cancerous they did a bone scan and realised it had gone to her bones as well in the chest area.  Now that the shock has worn off she is starting to realise that she needs more info so I am putting her in touch with some other people and sites that she might find useful.   ‘practising my Social Work skills in the chemo lazyboy’

Just remember  folks not all breast cancer is the same and while breast cancer screening catches a lot of early stage cancer – there is about 25% of us that fall outside either the usual age range or in my case have a cancer that cant be picked up on mammograms and those are the ones that are usually more aggressive.  We doing everything we can to fight this thing but through no fault of our own we may not have a “pretty pink perky survivor” ending

Champagne anyone?

“I drink it when I’m happy and when I’m sad,

Sometimes I drink it when I’m alone,

When I have company I find it obligatory.

I trifle with it when I’m not hungry and drink it when I am,

Otherwise I never touch it – unless I’m thirsty”

Madame Jaques Bollinger 1961

One of the things I left off my Busy Living post was the fact that this last Monday gone  OH and I had a very indulgent evening tasting Prestige Champagnes at Glengarry Wines.  We decided to spoil ourselves while I was on chemocation and make it an early birthday present to each other (Both December babies) as we dont know what chemo side effects are going to be rearing their ugly heads from now on.  Although the tickets were over NZ$100 each when you are tasting 9 prestige champagnes worth between NZ$250 and NZ$500 dollars and we got half a glass of each with canapes we feel it was worth it for a really indulgent treat.  OH was especially lucky as I was doing ‘tasting’ and only drinking the one that I really liked so he got my extras so that I could be the sober driver home.

They gave them to us in sets of 3 glasses from lighter to more intense

My favourite of the lightest ones was Taittinger Comtes de Champagne 2000 (up against Louis Roederer Cristal 2004 and Cuvée Dom Pérignon 2002)

The next three were Veuve Clicquot La Grande Dame 1998,  Mumm Cuvée R. Lalou 1999 and Piper Heisieck Rare 2002.  The Piper Heidsieck won this round and also was the prettiest bottle, in my opinion, of the night

The last three were the more intense Champagnes.  Bollinger La Grande Année 2002, Pol Roger Cuvée Sir Winston Churchill 1999 and Krug  Grande Cuvee

Although OH and I had tried the Sir Winston Churchill before and loved it we were pleasantly surprised to find the other two were just as good if not better and the Bollinger won our vote out of these three.

We were so impressed with the quality of the Bollinger and the fact it was in fact the cheapest bottle of the night we took advantage of the special pricing for the night and bought one to put away to celebrate OD’s wedding next  year.

I asked for a empty  bottle of the Piper Heidsieck as a souvenir and they said they would pop it in with our order.  When it arrived this morning not only had they popped in the empty souvenir bottle but two full little piccolos of Piper Heidsick champagne as unbeknownst to me OH had told them of our situation with my health and the note read “Hope this makes the next year a bit easier”.  I was very touched by the gesture.

the pretty Piper Heidsieck Rare bottle and the little bottles they put in with it

Busy living

This post follows on from the quote that I used at the end of ‘Bigger not better’,  I haven’t written any blog posts lately because I have been doing exactly that- I have been busy living.  With my last exam on the 7th of November, and the side effects of Xeloda wearing off since I stopped taking it around the middle of October, my incresed ability to focus and get out and do other things has meant I have been very busy.  I have tried to do quite a bit of looking for Christmas presents, caught up with a couple of friends, started cleaning out the spare room for our ex-exchange student, or as we call her our french daughter C from France that was here in 2006, to use for 6 months  – she arrives the week before Christmas.  I have had appointments for podiatrist, dentist, lymphodema therapist and hairstylist.

I have gone to the Breast Cancer Aotearoa coalition AGM (at the beginning of November) where I did a practise run of my part of the presentation we were giving to the PONZ conference then spent two days at said conference (Psycho-social Oncology New Zealand) last weekend and did presentation again.  Myself and two other committee members presented on consumer involvement in working with the professionals as evidenced by the video series I took part in ‘Kiwi stories of Breast Cancer’ (My portion was on why I participated and some of the issues faced by other participants.  I thoroughly enjoyed the conference and it was interesting both from a patient/consumer point of view but I also appreciated it as a student studying social work how the support services work in the ‘real world’

I have continued to go to Aqua aerobics at least once most weeks and two weeks ago started another fitness regime as well.  Club Physical runs a ‘Cancer Wellfit’ programme which is a FREE ten week light exercise  regime with a personal trainer (half an hour twice a week) at the gym doing mild cardio and weights targetted at what you are capable of.  With having to cut back on my walking so drastically because of the xeloda side-effects, I feel I need all the help I can get maintaining some sort of fitness going into the next chemo regime.

When I have been tired from all the outings I have curled up and read a book – something I don’t do as much of during the uni year because of all the prescribed readings.

To top all this activity off today, being the day before I start my new chemo regime I went out this afternoon and bought a wig for when I lose my hair (in approximately 3 weeks time)

I think I’ll have a rest now 🙂

Update: I went to the gym early before my first chemo on Thursday  and graduated to 2 repititions of  the 4 weight machines I do, and graduated from recumbent bike to treadmill where I surprised the trainer by still walking very fast – natural walking pace 4.5km/hr for 10 minutes  – Well done me!!

Grave Matters

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.

‘Oysters for Lunch’

Now I’m not a fan of shellfish but I am very excited to announce the launch of the ‘Sweet Louise’ members book ‘Oysters for Lunch’ that I wrote a couple of short stories for inclusion in.  I have had the priviledge of reading a couple of the other contributions and I can’t wait to read the rest.  I think it is going to be a fantastic book.

It is going to be launched at Sweet Louise’s Candlelit Carols on the 4th of December. Tickets available from Sweet Louise and the ticket price goes to support Sweet Louise services

The book is available for pre-sales from 3 November  on the Sweet Louise
shop at  http://www.sweetlouise.co.nz/Shop/Default.aspx and copies
will be posted out to those who have ordered on 5 December after the launch on
the 4th. Copies will still be available on the shop afterwards and
for sale at the Candlelit Carols too.

The following is the official publicity blurb for the book

Oysters for Lunch

Writings by women living with secondary breast cancer

Edited by Jane Bissell
(The Louise Perkins Foundation 2011)
ISBN 978-0-473-19936-4
RRP $25.00

Available from the Sweet Louise Online
Shop at www.sweetlouise.co.nz or
contact rachael.storey@sweetlouise.co.nz
to order your copy. All proceeds from the sales of Oysters for Lunch go towards
the provision of Sweet Louise services and support.

Over2,600 New Zealand women and men are diagnosed with breast cancer every year and about 15% will hear the news that the breast cancer has spread to other parts of their body. At this stage the advanced cancer, also known as metastatic or secondary, is incurable.

The opportunity to read creative work written by women living with secondary breast cancer is a valuable one, a gift not only to those who may follow a similar
path but to all of us, offering intimate insights into lives that are challenged by the realities of cancer and lived fully ‘in the moment’, shared passionately with beloved family, friends and places.

This collection of stories and poems written by Members of Sweet Louise are penned from the heart. The writers share the highs, lows, joys and sorrows of life with an incurable cancer.

Within this book you will find works of inspiration, insight and value. The title
story, Oysters for Lunch by Raewyn Hilliard typifies the spirit and strength of the contributors as they cope with the challenges and rise above them in ways that are at once everyday, but poignant. And there is so much more in this little book, lessons that prompt us to look at our own lives and think, ‘Am I living the best way I can, at this moment?’

“These stories and poems are an inspirational tribute to the extraordinary lives of our authors living with secondary breast cancer and we know that the women who contributed their work did so with a courage and determination to help make a difference for others.”

Sue Brewster, CEO Sweet Louise

The Louise Perkins Foundation would like to thank Roche New Zealand and The Max Foundation for their generous support of the Sweet Louise Creative Writing Project and book. 

Bigger not better

I had my oncology assessment appointment on the 25th of October to get the results of the CT scan, unfortunately because of the long weekend the official report had not been done and put in the system but the CT itself could be accessed so the Oncology registrar Dr KH ( who knows me rather well from my many visits to Ward 64 and Acute Oncology 2 years ago) pulled up the CT and we all: Dr KH, OH and I looked at it together.

We concentrated on looking at the larger tumor on my liver and in a split screen comparison with the June scan it was obvious that we were looking at progression, i.e. the tumor had almost certainly grown.  We discussed my next treatment option and I suggested one that I knew some other people had been on that I hadn’t tried yet and she agreed to take it back to Dr H for his approval and said she would put my name down to start it but it would possibly 3 weeks before I got on the schedule for Adriamycin.

Much to my surprise a day later I got a call from the scheduler saying they had scheduled me to start on Thursday the 3rd of November.  Given that we still hadn’t the official report and that I had my exam on the 7th still to worry about I was a little taken aback by this and rang the hospital and Dr H to see what was happening.  Dr H confirmed he had talked to Dr KH and they had agreed on the change in chemo but he said I would need to talk more to Dr KH to get the results and to change when I was starting Adriamycin.

Dr KH rung me back on Monday with the official results and they are as follows – both tumours have grown since the June scan the large one has grown over all, and the smaller one has just grown ‘fatter’

Above is a drawing I did (on the computer) That’s a ruler with millimeters showing at the bottom – the tumours shown : the  filled in purple circle is current size, the darker purple line size in March and the lighter pink/purple line June measurements.  They now measure  5.1 cm x 4.2 cm for the larger one and 2.5cm x 2.3cm so as you can see the large one is significantly bigger than it was.

Dr KH was happy to postpone my start of weekly Adriamycin, another IV chemo (my poor veins!!) to let the toxicity from the Xeloda chemo disperse a little more.  Although she would have been happier if I started next week or the week after I managed to convince her to give me a mini chemocation (as it looks like I won’t be getting the larger one I hoped for) until after I have attended the PONZ conference in Hamilton on the 18th and 19th of this month (more about that in another blog post.)  So my new start date for Chemo is the 24th of this month.  The Adriamycin will have  the usual chemo side effects of nausea and neutropenia (low blood counts) but hopefully having it in smaller weekly doses rather than a bigger dose every 3 weeks will alleviate that.  I will lose my hair again but I am surprisingly OK with that,  after all it is one of the reasons I have kept my hair short and not grow it long and curly again – because I knew there might come a time that I had to lose it again.

Now we have got the official word and the official plan I am surprisingly upbeat about things.  As my friend L (my local ‘IBC sister’) said when I told her last night she has got to know that is ‘typical Jenny’.  Others I have told this week have been equally surprised at my demeanor but I have always said that it is the ‘not knowing’ that does my head in.  Once we have a plan I am fine.

I  will write some more catchup posts later this week once I have got my last exam out of the way.

But for now I will leave you with one of my favourite quotes that my IBC/BC mets sister ‘Just Enjoy Him’ put on Facebook today which is very much how I embrace my life at the moment

“I guess it comes down to a simple choice, really:

get busy living or get busy dying.”

~ Andy Dufresne ‘The Shawshank Redemption” (1994)