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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

Overtaxing my brain

I got the results of the brain scan last Tuesday when I saw Dr H. The brain scan came back as normal – my children joked the doctors can’t know me very well then and my reply to that was it was the brain structure they were looking at, people could make up their own minds about the state of my mind. LOL!!

Dr H wants to schedule another CT scan of my chest just to make sure the node is still shrinking/shrunk. This will be done mid-April. I am still getting quite a lot of pain in my chest and I talked to him about whether I should try to wean myself of pain killers – he said it may take up to 3-4 months for the pain to calm down even if the node has shrunk.

This combined with the fact he wanted to do another scan did put me in a bit of a blue mood as I have been concentrating on Uni and thinking by the end of April things would be all over. I have been struggling quite a lot with the reading and assignment part of Uni as by the time I get home I am usually too tired to study. Most of the time I push stuff to the back of my mind but the conversation we had brought it forward again and reminded me that even after April there are going to be ongoing tests and medication. I am crossing my fingers and hoping that the next scan will show the node has shrunk and that I will definitely be stopping the Vinorelbine at the end of April. Carrying on with the Herceptin after that won’t be anywhere as tiring or nausea-inducing, although they have also scheduled another echocardiogram of my heart to keep an eye on the Herceptin’s effect on my heart function.

I have just finished my second assignment and I have to admit sometimes I wonder whether I am doing the right thing trying to do Uni full-time.  I haven’t updated my blog that often because I just run out of steam.  I may have more time to do a catch up blog in the holidays but with MD coming up from Christchurch for a week and a half and YDs 21st Birthday the first week of the holidays it may be the second week before you get an update on here. 

Just so you dont think I am running myself completely ragged – I made sure that we didnt have YD this weekend as she is coming home for some of Easter and then the following weekend for her Birthday party.  I spent yesterday banging out my assignment so that I had some down time to share with OH today.  We visited MIL this afternoon but then spent the evening going for a sunset walk at Maraetai. 

Sunset at Maraetai

After we had walked from one end of the beach and back again – we sat on the beach and had a burger and watched the sunset.  A very good end to the weekend. I forgot to take my proper camera so you will just have to make do with the pictures from my phone.

red sky at night

moon over Maraetai

DVT=Definitely Varied Timetable

Thank Goodness DVT did not equal deep vein thrombosis. 

Those of you that have been following my twitter or facebook status updates will know that I got checked out for a possible DVT in my right calf last week.  My leg had been aching ever since I started Uni and I  just put it down to the extra walking I was doing especially the fact that with going to Uni I am climbing a lot more stairs as well as doing more walking as a whole.  When it wasn’t easing I happened to read on the IBC mailing list a conversation about DVT’s and thought that maybe I should be taking the ache more seriously as the symptoms they were describing were very close to what I had been experiencing. 

 I rang oncology on Thursday morning and asked if I should come in earlier for them to check it out before my chemo later that afternoon. I got in there (thanks to my chaffeur for the day JMJ) and they thought it was definitely worth checking to make sure it wasn’t a DVT.  This is tested by ultrasound and they tried to organise it to happen while I was in there on thursday but ran out of time, and I had to return on Friday morning to have it. I missed my Friday lecture but managed to make to Uni in time for the Friday tutorial.  The ultrasound was negative for a DVT so they think it is muscualr but if it is still playing up in a couple of weeks it may have to be followed up by further investigation probably by orthopaedic doctors but as a last resort they would also check that there was no tumor in my leg.

Another thing about Thursday is that I had half been expecting a phone call to say I wouldn’t be having chemo as my neutrophils had only been 1.55 the first week of my cycle (the week before) so I was expecting them to dip under the allowable limit for chemo.  To my amazement when I asked on Thursday afternoon what my neutrophil level was  – somehow they had managed to be at 1.6

Just before 3pm on Thursday they sent me upstairs, from acute oncology where I had been, to the chemo daystay unit.  When I checked in with the reception upstairs they asked if my radiation oncologist Dr P had seen me.  I couldn’t think why Dr P would want to see me when it had been decided that I was not eligible for radiation therapy this time round.  It turned out she actually wanted to ask me to take part as a test patient for the radiation oncologist exams again.  These exams are for those doctors that have been training to be oncologists and this is their final exam before being fully qualified as oncologists. I have been joking with my friends that I’m going to be a crash test dummy.  Being a sample patient means the doctors sitting the exam have about 2o minutes to ask me questions and examine me (I must admit having IBC has made me much more of an exhibitionist LOL – I have had so many doctors , medical students etc looking at my chest it really doesnt worry me if a few more do.)  The doctors are then grilled by the examiners about how they would treat me from what they found out from me.  So basically if they ask the right questions and listen properly and examine me properly they should be able to answer the examiners questions.  I had to meet with the examiners this afternoon so they could check that I fit the criteria they neeeded for the sample patients and they were very impressed with my ablity to articulate my medical history and treatment up to this point – we also discussed the fact I was at university doing Social Work with the end goal of being a social worker in the health system and one of the examiners said that he would definitely give me a job.  They would have liked to use me for all the exam slots but because I am already committed to university classes in the mornings I am just doing the afternoon session tomorrow – there is also a session on Thursday morning I could have done if  I hadn’t already been booked in to have my Brain CT scan then.

As well as all this going on I went to a essay writing workshop at Uni on Saturday as I am not trained in how to do acadmic essays and I have been out of study for so long that I thought it would be good to do it to set myself up to succeed.  I spent all Saturday in Auckalnd and drove the car up and back which just reinforced the fact that taking the train to Uni is the right decision for me.  I felt so tired and unfocussed driving home.  I spent Sunday doing my first assignment which was a critical article review of one of the readings for our Sociology paper – a 750 word essay due next week and I must admit even with doing the workshop the day before I struggled to get my head around what I actually needed to write about.  My next assignment is due in a couple of weeks and is longer but I have a clearer view of what I actually need to do for that one and I dont think it will be quite as hard to do.

So that is a not so brief recap of my very varied timetable of last week and this.  And for those people who read this and wonder if I am overdoing it – don’t worry I am looking after myself!

Starting Uni

Wow – has my week been full or what!?!  As well as starting Uni this week I have had an oncology assessment on Tuesday and vinorelbine/herceptin chemo on  Thursday. It has been mentally and physically draining and my mantra for getting through it is “I just have to get through these next few weeks” 

The first few days of uni were the worst – it was overwhelming  just finding my way round the uni computer systems: 

nDeva (where you enrol for classes check schedules and room numbers- I’m still trying to sort out my general education paper for the second semester) 

CECIL – not sure what the acronym stands for but if CECIL was a person he would be a cantankerous old gatekeeper standing in the way of you accessing all the resources you need for your course.  You need to know how to appease him or do the secret handshake to get into certain areas

EC mail – based on google mail or gmail – I now have another email address as well as our family and and my personal hotmail address I now have a uni email as well  – after thinking about it I decided not to get it to forward my uni  mail to any of my existing ones as my hotmail is pretty well inundated with IBC related stuff  and our family one, although I could create a seperate folder for my uni stuff to download into on our main computer that we have it set up to download to,  it means I couldn’t access it off my laptop.  So keeping the uni mail seperate makes sense to me.

As well as these main systems to get my head round there is also the library and the information commons systems to understand as well.  The information commons is where you can log onto computers and do your assignments or download resources and send to printers.  You can load money onto your student ID card that you then swipe at the printers and it will bring up all the documents you have scheduled to print. The printers are much faster than our home inkjet so I will do the majority of printing if I can at Uni.  I have decided that I need to print out all the reading resource material because even with my new glasses I find it hard to read a lot of pages at a time off a screen.  With a hardcopy printout not only can I read it easier but I can highlight and do notations as necessary.  T0 save paper I have printed most of the resource material out 2 of their pages to an A4 page.

I have been proactive in telling people about my situation with ‘Gertrude’ and have also set up a facbook group for our year (1st year BSW 2010) where we can all discuss different aspects of the course.  The group of Uni classmates that I have associated with have all been really supportive and will pass on notes and help me if I have to miss any classes due to treatment.  I have also been proactive in touching  base with all my lecturers both by email and in person so that they know what the situation is and they have all been very supportive as well.  It is my hope that  I wont have to miss any classes but anybody who has read my blog in the past knows how unpredictable ‘Gertrude’ makes my life.

If you have checked my blog in the last week you will have seen that I have done twitter updates (right hand side of blog) during the week.  These were sent from my cellphone while I was on the train.  I will probably be using twitter regularly to update my blog during the week then try to do a larger post in the weekend if I have time.  I am really loving the train and bus mode of getting to and from Uni – although at times the bus and train can be crowded and standing room only it is still less physically demanding than me trying to drive in peak hour traffic.  OH drops me to the train in the morning and picks me up at night and I stay at Uni studying etc so that my arriving back in Papakura is after he arrives home from work.  Having none of the kids living at home makes it easier for us to organise a schedule that suits just the two of us.

YD was very upset yesterday when she rang –  she has a cold and so was unable to see me like we had planned for this afternoon, so OH took her out for a short while for lunch.

I saw one of Dr H’s registrars on Tuesday and she was happy for me to go ahead with the brain scan just for peice of mind.  I have booked it for the 18th of March which is supposed to be my chemo- free week although i am a little concerned whether or not that will actually be the case.  Since my stay in hospital my neurophils (the white blood cell count that they gauge whether or not I can have chemo) have been as follows

11 Feb neutrophils 4.5 (nicely in the middle of the normal range of 2-8) so was allowed my vinorelbine/herceptin combo

18 Feb – 1.66 (only just within limits – they wont give chemo below 1.5) then given my vinorelbine dose on its own

24 Feb – 0.5 (far too low for chemo) which is why I am missing 3rd week

4 March 1.55 (again only just within limit) given vinorelbine/herceptin combo

I am worried that the neutrophils will be too low next week for me to have my week 2 dose.  I won’t know until I have had my blood test on Wednesday and the hospital has the results on Thursday.  It makes it very hard to plan.  I may end up missing this next week and then having chemo the following week thus having brain scan and chemo on same day.  I don’t particularly want that but can’t do much about that.

I have a gap between my lecture and tutorial on Wednesdays that I have to fit my bloodtest into – the easiest lab to get to is in the CBD and I can make it there and back on the bus with plenty of time.  I need to have it every Wednesday even if its not a chemo Thursday just so they can track how low my neutrophils are going.

As I say to people the good news about what the chemo does to my white blood cell count it also seems to be doing to the cancer, and that is what keeps me going. 

The other thing that happened this week that made it busier than usual was that SisH and M were over from Melbourne this weekend to visit friends and family and organised to get together with me and SisM for afternoon tea yesterday – they had been to see SisF in Tauranga and she decided at the last minute to make the two hour trip up just for afternoon tea.  It was lovely seeing everyone.  Only Bro and SisT were missing but it was a bit far for them to come (from Christchurch and Brisbane respectively) just  for a couple of hours LOL.  It was a little poignant as this weekend was also the 6th anniversary of our Mum’s death.

Oh well, I suppose I had better get back to my study – got three readings to do for tomorrow and two for Tuesday

Look for another long missive next weekend, but keep an eye on the twitter updates in the mean time.