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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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  • SUSAN’S ARMY

    No Princess Alone button

Achieving things

 

Following on from my very busy week last week – avoiding the need to do my University assignment by being out and about for most of the week then having a day of rest and recuperation.  I spent most of the rest of the long Easter Weekend reading, researching and writing the assignment that was due yesterday (Wednesday).

Achievement #1: I’m proud to say that for both my assignments due since the news of my metastasis were confirmed, they have been handed on time,  I haven’t needed to ask for extensions although the lecturers would probably have given me one, and I feel I have done a fairly competent job with them both as well.  I know my brain isn’t working as clearly or to the intellectual extent it used to, but then it didn’t last year either, and I managed to pass all my papers.   I am about to get my mark back for the one that was due a few days after I got the definitive news and it will be interesting to see what marks I achieved given that my mind was still darting all over the place.

Achievement #2: I finished my first two week course of Xeloda yesterday – having my last 5 pills last night.  I consider that another achievement as well.  Even though the side effects got a little more pronounced over the weekend and I was up most of Saturday night with abdominal cramps and slight diarrhea, they were still manageable.  If it remains only one night out of the fortnight that it gets so bad I can’t sleep, then that is able to be coped with.   I do recognize  that the second cycle will give me a more realistic idea of the side effects as this cycle was more of a gradual build up of the toxicity.  On a smaller note of achievement I managed to have a slight sleep in this morning and enjoy the luxury of not having to have breakfast by a certain time due to the tablet timetable.  I now have a week off before seeing Dr H again next Wednesday to get the next cycle’s worth – another 140 tablets.

Yay!! an empty box

Achievement #3: Today I submitted two short stories to be included in a collection that is going to be published as a book.  All the contributors are women with secondary (metastatic) breast cancer.  I have until the beginning of June to submit other stories, but they will probably only pick one from each contributor.  I’m quite excited about being a part of this project.  I’ll let you know when and if I am going to be a ‘published author’ as well as a blogger.

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Making Hay…

…While the sun shines.

First a little ‘housekeeping’ – on my last blog post link on facebook there were a lot of comments made on facebook on the link itself.  I’m not trying to be a pain about this but apart from putting  the links to new blog posts there for those who don’t have me in a reader or rss or email subscription I’m really trying to shift ‘Gertrude’ off facebook and onto the blog,  making facebook my more ‘normal’ space.  Don’t get me wrong I love your comments and support but I would rather the comments were made here in the blog itself or you can fb mail me.  As YD has a facebook page herself I don’t want to worry her unduly if she reads comments about me being sick etc.  I’m not lying to her, but also want to alleviate her stress as much as possible.

Now onto the main part of the blog post – I spent the majority of the last week out and about, making use of the sunny weather and continued minimal, manageable xeloda side-effects.  Tuesday I had a Sweet Louise meeting in the morning and then one-to-one counselling at the Cancer Society in the afternoon.  You will all be pleased to know that I am fairly sane and sensible by their standards and handling things well.

Wednesday was a day of indulgence. OD and I went  to The Langham in Auckalnd and indulged in their ‘Tea Royale’

Although classed as afternoon tea it was definitely a ‘ladies who lunch’ moment. 

We had taken the train in so we meandered down to Britomart , doing  some shopping at Queens Arcade and ‘Downtown’ (picking up some books in Whitcoulls sale to feed OD’s and my ‘book addiction’)  We then made our way back to Sylvia Park where we met up with MD and SisM for dinner, Niece S and J joined us for dessert.  We spent the evening window shopping and waiting for the draw of all sorts of goodies in their ‘Winter Fashion Premiere’ draw.  Unfortunately, we didn’t win anything but it was a nice night with my older girls and extended family all the same.

On Thursday there was a group talk at the Cancer Society on managing stress and so I used that as an excuse to avoid doing my university assignment – due next week, and hopped back on the train to Newmarket.  I prefer taking the train as although I can and will drive in Central Auckland it is one of the things I deliberately chose not to do to ease my stress levels.  On the train – especially on the way home when I am tired – I can switch off, something you can’t do in peak hour traffic on the motorway.  I meandered slowly up to the Cancer Society and back stopping for lunch in Newmarket on the way back to the train.  When the talk was over I happened to chat to one of the other participants.  I think I helped put things in perspective for her as she had breast cancer – lumpectomy and radiation.  She wanted to know my story as she assumed as I still had my hair I had not had chemo.  I don’t think she could understand why in a lot of ways, I was in a better place, phsychologically than she was.  That last statement sounds a little up myself – but I think for long term cancer ‘fighters'(struggle to know what term to use there – don’t want to put patient, but don’t necessarily like the battle analogies either) we get much more adept at rolling with the punches and making the most of every day.  We still have our bad days but we treasure and don’t waste the good.

Oh and in amongst all that I still managed to get my last AFS newsletter out!  Its the formatting that is the fiddliest bit:  trying to make all the items fit certain amounts of space on a page,  finding appropriate clipart etc to jazz it up a bit all takes time.  I have enjoyed doing it for the last 7-8 years but it is one less deadline I need to worry about from now on.

I have to admit on Friday the busy week caught up to me.  With shops shut, YD away for the weekend with her house and the older girls also doing their own things I had no pressing engagements and feeling tired and headachy I must admit I curled up with books and DVDs all day.  OH was busy trying figure out how to connect up a network for  a scanner/printer that we can send to wirelessly from all our laptops so he was busy with that. So he was busy doing his own thing so I wasn’t depriving him of company either. 

Having spent the day resting I feel much better today and will try and get some work done on my assignment.  But, of course, first I had to procrastinate by writing this blog post 😀

First few days of Xeloda

So far so good,  I haven’t developed any major side effects so far, a little nausea – which is kept under contol by my old friend domperidone (Motillium), and tiredness.  I can’t decide whether the tiredness is just a side effect or whether its just me being able to relax at home has lead me to give in to much needed catch up sleep.  I have been so wound up lately , I am tempted to think it is a reaction to being home and relaxing as much as a side effect of medication.  I have to get up early to take my medication 5 pills each morning and night approx 12 hours apart and after food so makes it easier to have them round breakfast and dinner.  On Saturday I went back to bed and slept til 11 and then returned to bed with a splitting headache after lunch and slept half the afternoon as well and still managed to sleep that night. 

Yesterday I went out for most of the day with OD and niece S and although getting a little ‘wonky’ after a long time on my feet, after finding a comfy armchair and having some light refreshments (and anti -nausea meds) I soon felt better. 

This morning I managed to get some tidying done before my study group for our group assignment on NZ legislation arrived and managed to stay focussed during our meeting figuring out how to weave aspects of four different pieces of legislation (concentrating on 1 per person) into a scenario that we might encounter as Social Workers – section blah blah of this act works with section blah part blah blah of that act.  Sort of fun as well as hard work – my cohorts may disagree on that one.

I don’t seem to be suffering from the expected diarrhea side effect yet and am hopeful that that will stay away, and also no major hand /foot syndrome but its early days yet.  I am trying to be optimistic but I know that I will know the full extent of side effects by the end of the second cycle.  I am spending the second half of the semester break trying to get ahead on all assignments due so that if things deteriorate sideeffects-wise I will still be able to get everything in on time.

That being said tomorrow is going to be taken up with ‘Gertrude related’ events.  I am going to a ‘Sweet Louise’ meeting in the morning. and having a catch up session with a Cancer Society counsellor tomorrow afternoon.

On Wednesday I am spending the afternoon, evening with OD and we are going to Tea Royale at the Langham Hotel in Auckland.  Just something I have always wanted to do. I can pretend to be ladylike for an afternoon LOL.

I think the biggest thing with having this chemo tablet regime is having it at home and trying to time manage it.  Last night I almost forgot to have it after dinner and think I may have to put a little reminder in my phone to ring and remind me at 8.30 am and 8.30pm to check that I have had them every day.  I’m sure I’ll get used to it but with not being an usual ‘breakfast person’ it feels quite an unnatural timetable to me

With this offer

In the style of an infomercial. LOL

Introducing the new ‘wonder drug’ Xeloda. No more sitting in that blue lazyboy chemo chair -now you can do your chemo in the comfort of your own home

Every three weeks you will recieve a supply of pills

 

taking only 5 in the morning and 5 at night every day for 2 weeks you will soon see amazing results (hopefully)

But wait there’s more…

We will also give you a fridge magnet with handy information and an instructional DVD all for no added cost

and how much will all this cost you- not the usual price of $999.23 but with the government subsidy you get all this for $3.00

and this low price will continue each time you get a new batch of tablets for your 6 cycles

but not only that….

for the same low price of an extra $3.00 we will also give you a supply of loperamide to stop that pesky side effect (diarrhea)

Empathy vs Sympathy

Subtitle: What I need from my friends and other people

Sub-sub-title: or am I just a stroppy independent b***h?

This post has come about due to discussions I have had with various friends and aquaintances.  As I’ve said in previous posts, I dont like pity or sympathy and think true empathy of my situation only comes from tuning in to how I feel and how I want people to react to me.  I found this quote which sums it up for me

We recognize others as empathic when we feel that they have accurately acted on or somehow acknowledged in stated or unstated fashion our values or motivations, our knowledge, and our skills or competence, but especially as they appear to recognize the significance of our actions in a manner that we can tolerate their being recognized – Wynn Schwartz:

 I need people to recognise that I will be talking a lot to my closer friends and family about my hopes and fears.  I am still getting my head around the whole ‘metastatic cancer’ scenario and what it means for me and I will talk to help me process this.  It does not mean I need anyone to try and jump in and fix it.  Just let me talk and process. 

Maybe I’m selfish but I can’t handle well meaning hands on my arms saying ‘”how are you?” in ‘that’ concerned tone of voice.  I also dont know how to respond to “but  you are looking great” – that one I think is getting to OH as well.  We bumped into a workmate of his who said it and OH’s reply was “yeah, apart from the tumour growing inside her”

My emotions are going all over the place sometimes happy, sometimes sad, sometimes nervous and sometimes annoyed.  I have less patience with percieved ineptitude, or people who aren’t being sincere or people who express overt pity and sympathy.  If they were truly empathetic they would pick up that I really hate that.  I am getting angry easier.  I know this will calm down to a certain extent once I’ve got my head round the situation more, but I can’t guarantee not to bite someone’s head off in the meantime.

I don’t need people to tell me to go try alternative therapies instead of starting on this next chemo regime, which a stranger did the other day. 

 I need my friends and family to just be my friends and family, allowing for my mood swings and wanting to spend time with me.  I want to just have fun spending time with people and not make it all cancer, all the time. 

Most of my class mates at Uni have picked up on the fact that my health has got worse and most of them are judging correctly how I want them to react.  That I need Uni to be a ‘normal’ place for me.  Somewhere I am not a cancer patient.

If I continue down this metastatic track there will come a time when the family and myself may need a lot more ‘hands on’ help but we dont need that right now.  Its part of me needing to feel as independant as possible. 

On the whole people think I am a fairly positive person and that is how I think of myself too.  With metastatic cancer you have a choice – either carry on living your life to the best of your ability around the strictures that treatment may put on you, or curl up in  a corner and wait to die.  I know which one Im choosing.

Thanks to all my family and friends who understand me.  I’ll try not to be too much of a stroppy b***h

 

Preparing for round 3

Deep breaths…. tomorrow all going well at the oncologist appointment, I will get my first batch of capecitabine tablets.  I have spent the last few days making the most of the good weather and good health and getting out and about when I can.  We had YD home all weekend as it was her birthday,  and I also thought that it would be good if she had a whole weekend with me if side-effects from the chemo curtail our time together other weekends.

I have to admit as the time comes closer to start the chemo I worry about whether I am going to be fit and healthy enough to keep doing all the activities  I do now.  University, spending time with YD etc.  I guess all I can do is try to keep things as normal as I can.

I have reprioritised a few things.  I decided I would resign  as the local AFS (Student Exchange) chapter newsletter editor as I have been doing that since 2003 and as it is voluntary but requires working to deadlines  I decided to minimise my stress a little more by giving that up.  I figure the stress of working to uni assignment deadlines will be enough. The flowers at the top of the post are a thank you from the AFS committee.

What I have done to prepare is try to keep my fitness up by walking everyday,  getting a manicure and pedicure to get my hands and feet in as good as possible shape for the  bad side effects that will affect them. They call it hand-foot syndrome – numbness, tingling, pain, redness, or blistering of the palms of the hands and soles of the feet – sounds like fun doesn’t it. Ooops: edited to add due to this expected side effect I had to get my wedding rings cut off.  They were too tight to come off easily, and I thought it was better to get them off before my hands were swollen and painful.  They are rejoining them at the cut and I will wear them around my neck for the duration.

I spent time in several phone calls from the hospital making sure I had all my relevant information and appointments.  This time around I have assigned a specific oncology nurse specialist in addition to my oncologist to ensure I get continuity of care and who I get in touch with directly if I have any concerns regarding my health and/or chemo side effects.  I must admit its things like this that make me realise that this time is different than my first two rounds “this time- its serious” (not that it wasn’t before)

I’ve pulled out my “My Health”  folder which I take to all my appointments when I’m in active treatment and rearranged it to be ready.  I take it and slot in any blood test forms, other chemo information, and appointment forms I am given at each hospital visit .  Its one of the things that helps me keeps organised.

It did depress me somewhat that it is pressed into service once more.

I need to get to the hospital early tomorrow to have an ECG to check my heart is still good.  I have found out one of the possible, but not usual, side effects of this next chemo is angina and myocardial infarction (heart attack)  – gee , could I possibly put in an order not to have one of those!

We have a plan

The following is a copy of an email  letter I sent out to my friends and family after the visit to the oncologists a week ago.  It’s taken a while for me to get it on here, as I have also had a uni assignment to do as well.  That got handed in on Monday. And as of yesterday I now have no classes for two weeks as next week and the week after are mid semester break – so have more time to update with blog posts and let every one know what is going on.
 
“Dear All,
We have a plan, I am starting an oral chemo (chemo in tablet form) called Capecitabine – brandname Xeloda – sometime the week of the 11th April.

We decided that week so I wouldn’t be getting used to side-effects when YD is home for the weekend of her Birthday 8-10th April.

I will initially be having 6 cycles of 3 weeks with 2 weeks on the tablets and 1 week off, seeing the oncologist every 3 weeks to get  the next batch.   I will keep having this as long as it is having an effect – until treatment effectiveness plateaus (there is no further shrinkage of tumour or drop in tumour markers in my blood tests).  I will then have a 6 month break, if it remains stable for those 6 months there is a possibility of trying more rounds of Xeloda to maintain.

If while on the chemo or within the 6 month break when treatment effectiveness has plateaued more metastasis appear or this one continues to grow, we will be looking at switching to a different chemo.

Given the pattern/timeframe of the cancer’s recurrence so far, the doctor is hopeful for any single treatment protocol to be effective for at least 18 months.

The lesion/tumour on my liver has grown markedly since it first became apparent on the December scan and as of my scan of 15th March is approx. 4.2 cm x 3.5cm in size and is located in the area of my liver that is roughly adjacent to my right shoulder-blade – just under my diaphragm.

All of this is not great news as we move to more of a control mode rather than looking at me being completely cured.   Prognosis now is very dependent now on how effective each chemo protocol is at controlling progression.   As a family we are as OK as we possibly can be. OH, and the older girls and myself have always known from when I first got diagnosed in 2008 that this was a possibility due to the aggressive nature of Inflammatory Breast Cancer, so as much as we are upset we are also fairly pragmatic and realistic.  YD has only been told at this point that I need more medicine to make it go away again and that is all we are going to tell her for now.

For the meantime, we have decided life will on as normally as possible, but there are issues we do need to think about now such as quality of life, priorities if and when treatment doesn’t work etc.

There is a drug similar to Herceptin called Lapatinib (brand name Tykerb) that is not funded by Pharmac (for those readers outside New Zealand, that is the agency that decides which drugs are funded under our public health system) that I could take that would slow down the progression but at over $5000 a month (and still not a cure) I, and OH, feel it is not really worth it and not really affordable as I would have to stay on it indefinitely for it to keep having an effect and it would leave us with no money to have any sort of normal fun life.

There are also no clinical trials going in New Zealand at the moment that I am eligible for. 

I will be looking into complementary therapies but again it comes down to effectiveness and quality of life per $’s spent.

I do ask that you read my blog to keep up to date with what is happening –  I can’t promise regular emails.

If you have any questions feel free to email back – probably easier than phoning at the moment as, as well as dealing with this, I have a 2000 word assignment due for one of my Uni papers next Monday.

I thought it was better to give you all the information so I apologise if it is a bit overwhelming”

I have also sent a similar letter advising my Uni lecturers of what is happening and talked to L, the manager of YDs house, about  things  and we are having a meeting this afternoon to talk about how they can help YD at this time and in the future.

I have also had to tell a few more people in person and have my  ‘Body Shots’ photo shoot and viewing to pick images.   I have to say I look rather gorgeous, or at least for me, I am so glad I did it. 

I have included here a photo of the size of the ‘?’ on my liver now known to be a liver metastasis.  Comparing the size from August, December and March.

how fast the tumour on my liver has grown

If you have popped over here from Facebook I would ask that you comment here on the blog rather than on where the link shows on Facebook.  YD has her own Facebook page and can read well enough to be able to worry if she sees something with negative connotations. 

That is why I try to write my blog posts with a very ‘light’ intro sentence or two so that what shows up on Facebook in the link isn’t too worrying.  At the moment YD isn’t clicking on the blog links but there may come a time where I don’t link my posts to Facebook for that reason.  I will also be more flippant and light-hearted on Facebook for that reason also.  I am not trying to intentionally lie to YD but with things being in a very abstract timeframe, she only needs to know what is immediately affecting her for the next few months.  In other words in blocks of time she can understand,  so that with her autistic tendencies she doesn’t fixate on something that may or may not happen at some indeterminate time in the future.