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  • 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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  • SUSAN’S ARMY

    No Princess Alone button

Apart from the pants…

Apart from the ‘travelling pants’ what have I been up to these past 3 weeks since I wrote about the decision of stopping chemo.

I had my exam for the one paper I was doing this semester on the 18th June so some of the time was spent studying for that.  Although to be totally honest I struggled to find the motivation.  I had a bad cold the week before the exam and I struggled to study because of that but also it was a slight case of the ‘why bothers’ – I couldnt help thinking to myself what was the point of studying for an exam when I was not intending to carry on with the course and there was very little hope of me graduating.  OH even asked me why I was bothering with sitting the exam…. but it came down to the fact I had committed myself to this semester … regardless of whether I was carrying on or not I had to prove to myself that I could finish what I had started and pass this paper at least.

Once the exam was over I started to unwind.  At my last oncology appointment Dr H had added yet another painkiller to the mix – something that would work on the pain in my fingers and toes.  Amtriptylene is also a antidepressant, not that I need it for that, but also acts as somewhat of a sleeping pill.  So I have been sleeeping a lot somedays – a solid 10-12 hours sleep at night and then sometimes still an afternoon nap of2-3 hours.  But I am just listening to my body and sleeping if it says to sleep.  I’m making up for all the time the pain (corrrect medical term paraethesia) kept me awake at night.

I have not been totally lazy however.  I volunteered to go down to Rotorua last weekend to man a display for Breast Cancer Aotearoa Coalition at an event that was part of the inaugaral mid-winter festival.  (The organiser of an “Undies Splash and Dash” were to split the proceeds between our group and the Prostate Foundation.  There wasnt a huge number of entries for this the first event but they have high hopes for next year).  As I don’t trust myself to drive that far, I organised for Gary to come with me and for us to stay the night down there.  I tthought it would give us a chance to have a little bit of a weekend away.

Me andthe ‘leader of the undies pack’ beside the BCAC display

We meandered around Government Gardens on the Sunday morning, had a soak in the private hot pools at Polynesian Spa and drove out to see the Blue and Green Lakes and Lake Tarawera.

At Lake Rotorua

The view from our private hot pool at Polynesian Spa

Blue Lake

Lake Tarawera with Mount Tarawera in the background

SisM has also helped get me out and about.  She has an overabundance of annual leave to use up so is taking Fridays off at the moment so for the last two Fridays we have gone for short walks, first week was a walk around the Botanical Gardens after her taking me to get my port flushed at the local district nurses office, and a pleasant brunch at the Gardens cafe.  Then this week it was a walk around the coastline at Maraetai C came with us as she has also finished her exams.  It was a gorgeous day for the middle of winter

one of the little hidden coves on the way

The view at Te Pene Beach -as far as we went on the walkway from Maraetai

And of course there was the obligatory cafe stop when we got back to Maraetai.

This next week my wonderful Uni friend AW has organised for us to go away to a bach at Whangamata.  It will be myself, AW, MH and NU-B (my best uni friends) for Thursday and Friday nights and then OH and possibly some of the rest of the family may come down for the Saturday and Sunday nights.  I am really looking forward to it – I am hoping the weather is good for it.  but we are quite happy to curl up with books etc if it isn’t

My hair, my taste,  appetite, and energy are returning slowly, my fingers are responding to the amitriptylene and are calming down a little so I am definitely feeling a little more like my normal self, I have been off chemo  for a month now and I am hoping in another months time things will have recovered even more.

The Sisterhood of the Travelling Pants

Most of us who are a certain age or had girls of a certain age will know of the book series and the movie ‘The Sisterhood of the Travelling Pants’.

So when I found a website called Stage 4 Travelling pants I was intrigued. Shannon took the inspiration from the original “travelling pants” and created a way to support her sister Stephanie who was diagnosed at the age of 30 with stage 4 (secondary/metastatic) breast cancer.  Through different forums they had made contact with other young women with Stage 4 breast cancer and Shannon came up with the idea of creating a tangible link between these women spread accross the United States.   Using an old pair of Stephanie’s jeans she sent them out for the other women to autograph and decorate. I left a comment that I thought it was a great idea and what a pity they couldn’t come to New Zealand.  I only just fit the criteria as they are targetting under 50 year olds – women in their 20s, 30s and 40s.  After conversing with Shannon via email we sorted out that we could get them here

the front of the jeans

the back of the jeans

They also travel with cards and letters from the other signees so between the pants and the messages it is a very tangible link to fellow stage 4 sisters.

messages from the other signees of the pants

They arrived the week of ODs wedding so I didnt have much of a chance to do anything with them until after those activities and also study etc for my exam on the 18th June happened.

After my exam though I had the opportunity of taking them to our mid-winter Sweet Louise meeting and got my fellow younger Sweet Loiuse members to sign them.  I was invited to get up in front of the meeting and give a little talk about how they had come to be in New Zealand and  3 of them as well as me signed and I decorated the jeans with an adhesive paua outline of New Zealand and the Sweet Louise phone tag.

the pants with the Sweet Louise tag and NZ in paua

A couple of days after this I had arranged to meet up with my chemo buddy J who I had mentioned in this post.  She had been on 3 weekly chemo and I had been on weekly but every 3 weeks we would try and catch up with each other.  We had intended to catch up at a shopping mall but instead I visited her in the oncology ward (ward 64) that I had spent so much time in with my infections.  I thought while I had made plans to jump on the train and go to the shopping mall to see her I may as well take the train that little bit further and visit her in the hospital.  I took the pants in with me and she autographed them and was really glad to be part of it and it took her mind off the fact that she was in hospital and not spending time with her husband and kids.

I think these pants are a very tangible way of being connected to other women all around the world – if you are a Stage 4 BC woman reading this who is under 50 and want to be added to the travels of these pants get hold of Shannon at the website http://stage4travelingpants.com/ and see if they can visit you.

I still have to catch up with another couple of younger stage 4 women I know and get their imprint on the pants and then I will post them on, not back to the States but to Wales, UK to a woman there.  I will send them with notes from myself and others here and also a copy of the Sweet Louise  ‘Oysters for Lunch’ book.  These pants are truly becoming international travelling pants..

Decison time

Decisions…Decisions…Decisions….

These last few weeks as well as being involved in ODs wedding, I have been thinking long and hard as to ‘where to from here’.  Decisions have been made and discussed with the family.

On Wednesday I met with Dr H and told him of one of my decision.  That I wanted to stop chemo.  The peripheral neuropathy (nerve damage) was becoming debilitating and very painful. As I explained to someone it is like when you have had really cold hands – on the verge of frostbite when your circulation has stopped – and then as you warm your hands up and the circulation kicks in they become excruciatingly painful  – that’s what my fingers feels like all the time.

He wasn’t that surprised and was supportive of my decision.  As we had already discussed with the registrars the two visits prior, the neuropathy was going to be one of the deciding factors in whether I stayed on it.  At most I was going to have 6 cycles, another 6 weeks as I’ve had 4 cycles already, of Taxol.  He said he thought the Taxol had had some effect on the cancer as evidenced by my tumor markers dropping but he really didn’t think staying on it for another 6 weeks was really going to change the amount of control, and how that was going to play out in the long term.  My tumour marker had fallen again to 174.  He is hopeful that it will fall again in the next month or so while the chemo is still in my system.  He agreed that now it is more about quality of life.  As I said to SisM if he had tried to convince me to stay on the chemo I may have been swayed by his arguments as I trust his judgement a great deal where my treatment is concerned. The fact that he didn’t try and dissuade me at all reassures me that I am making the right decision, for me, at this time.

I know some people may view this decision as me giving up hope but it is not. It is me taking control of how I want to life the rest of my life.  It is about me having some really good quality of life before the tumours grow and impact too much on my liver function.  Being on Taxol has just made me feel tired and ‘crap’( slightly nauseous, off my food, and just generally blah) as well as the pain from my fingers all the time and I need to reclaim some normality.  Although it will be a few weeks until the chemo is totally out of my system, I am starting to feel better already.  I’m still tired but I don’t feel as ‘crap’ as I did.  It’s about feeling up to doing activities with family and friends and enjoying my life a little more than I have been.

The other big decision I have made is that I will not go back to university next semester.  As much as I love it I want to put my energy into some other things.  With this last semester all my energy has been used up by Uni, and chemo, with very little left for anything else.  Even though I have only been doing one paper the travelling time on the train, having to catch a 7.15am train in the mornings and spend an hour and a half travelling each way including bus and walk has worn me out.  Hopefully with being off chemo and without Uni I will be able to prioritise some of the other things on my ‘to-do-list’ and get them done.

Depending on what happens – in the unlikely event my cancer stabilises, I can always revisit this decision later on.  But for now, knowing that Taxol was the last chemo to try and that ‘Gertrude’ will probably eventually take over,  I am going to get back to enjoying my life without it being ruled by chemo, blood tests and uni each week and be able to wake up in the morning and say what do I WANT to do today.

I might even have more time and energy to write blog posts and let you know what I am up to.

Family

This last week cancer took a back seat and chemo took a holiday.

It was time to focus on family

It was time for a wedding.

OD and R got married.

I was Mother of the Bride and did a bible reading as part of the service.

doing the bible reading

I was tired but extremely happy.

Yesterday we spent a bit more time with family and friends at a day-after-wedding afternoon tea.

A great time was had by all