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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

On a tight schedule

I just sent OD and MD my schedule for the week as they are used to me being more available to talk to than I am going to be from now on.  My schedule for this week looks like this.

MONDAY:           9-11 lecture 11.30-12.30 tutorial

TUESDAY:            9-11 lecture 11.30 oncology assessment 2.30-3.30 uni reading workshop

WEDNESDAY:     9-11 lecture 1.30-2.30 possibly tutorial also have to fit in blood test round midday at nearest lab to uni

THURSDAY:         10.30 – 11.30 uni time management workshop 2.30 chemo also OH and I are dropping one of our cars in for WOF and service

FRIDAY:                9-11 lecture 11.30-12.30 tutorial

I also sat down with YD when she was round here for the afternoon and explained  that I wouldn’t be seeing her as often while I am still having chemo and going to uni all the other days.  We planned out on the calendar when I was going to spend time with her and her house staff have written it all down in the house diary so that they can remind YD what is happening.  We have planned up until her birthday which is in her school holidays and my midsemester break.

Part of me looks at this schedule and thinks “Aaaarrrrgggghhhh!!!! What the hell have I set myself up for?”  but the other parts (the ruling majority) know this is what I need to do for me.  This tight schedule finishes on 22nd April and then its just herceptin every three weeks and I was not willing to not go fulltime at Uni when its only this short time frame that is affected.  Doing uni full time from the start also gives me more flexibility in the future if I need to drop back to part-time or miss a semester if I need more treatment further down the track.  The degree is full time for 4 years and if you do it part-time you need to complete it within 8 years.

Uni textbooks and reading resources 

We have had two days of orientation which were compulsory, and have been given our reading lists and told what textbooks to buy.  I printed out the reading resources thay have put on the university database for us and estimate I printed out over 100 pages just as well I like reading

I got a letter in the mail on Friday asking me to ring the radiology department to schedule my brain CT scan or to tell them I don’t need it.  I agree with the oncologist assessment that the headaches I have been having are probably not cancer related but I think I will go ahead with the scan just for peace of mind, that with me starting this course of study, that with the internal mammary node shrinking  nothing else is brewing anywhere else so I can just get on with my study. 

Once the vinorelbine chemo finishes in April I know my oncologist visits are going to be further apart (not the three weeks they are now) but with me already having one recurrence I know they will be keeping a close enough eye on me to pick anything up as soon as it starts developing.

I probably wont have time to write another post until next weekend when I can tell you all how I survived the first week

Serenity

I wear the first  lines of the serenity prayer on a bracelet I got from thebreastcancersite.com

my serenity bracelet

God,
Grant me the Serenity to accept the things I cannot change,
the Courage to change the things I can
and the Wisdom to know the difference.

This is how I live my life from day to day and the bracelet is a great way to remind myself.  It’s been coming up a lot in conversations I have been having with people.  The other day I found the whole prayer and I thought I would share it with you too as it is definitely the way to serenity and acceptance of what life throws at you.

God,
Grant me the Serenity to accept the things I cannot change,
the Courage to change the things I can
and the Wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardship as the pathway to peace.

Taking, as He did, this sinful world as it is, not as I would have it.

Trusting that He will make all things right if I surrender to His Will;

That I may be reasonably happy in this life,
and supremely happy with Him forever in the next.

With OD moving out last weekend, life will definitely be quieter, perhaps more serene at our house.  Although it has been happening gradually for the past few years this is the first time that all three girls have officially moved out.  Up until now we have always had one of them at home at least.  This last week has not been serene as with OD’s move it gave us an opportunity to change some things around and create myself a little study space in one of the bedrooms.  It has been an opportunity to go through a lot of stuff we have been hoarding and get rid of stuff we don’t need and get more organised with the stuff we do want to keep. M has been helping me and making sure I don’t overdo.  There is still work to do but at least now I have got a fairly organised study space which will make University study more serene, less stressful.

I have orientation for University tomorrow and Friday and classes start properly next week.  I am glad this week has been a non-chemo week as it means my first classes I am not dealing with the effects of having had chemo.  It means I am a bit more switched on.  I have already got some of the required reading for two of my classes so I guess that is what I will be doing this weekend.  Its also OD’s 25th birthday on Monday so we are having lunch with her and R at their new house on Sunday – it will be an opportunity for YD to see their house for the first time.

 

 

All systems are go!!

After the “interesting” time I have had lately, I was ready for some good news this week.  Tuesday was the day that I got it.

At the oncologist assessment I got told the following – The CT scan I had in hospital showed that the cancerous internal mammary node has shrunk so much as to be negligible which means this chemo is working.  The echocardiogram on my heart showed minimal damage from the herceptin which means I can stay on that.  The other good news was that, whatever it was that caused my cold/breathing difficulties, it wasn’t whooping cough so it was just some weird virus that affected me more because I was immune compromised.

As this chemo is working it means I will finish 6 cycles of it but instead of having the vinorelbine every week I will have two weeks of it then miss the third week (which I have been tending to do with low blood counts anyway) I have just started my 3rd cycle on thursday so the next cycles until April will look like this.  This Thursday I had vinorelbine and herceptin, next week I will just have vinorelbine and then the following week I have a break from both.

My friend JMJ was the voluteer driver for this weeks treatment on Thursday.  I am trying to spread the driving around between friends and family so that OH doesnt have to take me every week.  I don’t feel too bad during and after chemo but I am just queasy enough to not feel 100% comfortable driving home.  JMJ rather enjoyed seeing what chemo was like and it was great having a bit of a catch up while the chemo infusion was taking place. 

The other piece of good news I got on Tuesday had to do with University.  The oncologist gave me the go-ahead to do full-time study and catch the train to class (easier than driving on the motorway at that time of the morning )- I had asked him if either the train or sitting in class was bad for my weakened immune system and he said no as long as I take sensible precautions.  I have found antibacterial wipes that are wrapped singly and I keep a few in my purse all the time.

I had a meeting with a University staff person on Tuesday afternoon and they confirmed that I can do full time study and just take time off for treatment as needed as long as I let my lecturers know what the situation is.  The classes for the first half of the year work well as Thursday (my chemo day)  is the one day I don’t have classes.  but I may have to take time off on the odd Tuesday off for my assessment appointments. Or other days here and there for other tests/appointments.  Because my vinorelbine treatments only last for the first few weeks of the semester (It starts in two weeks time),  I wanted to try to do the full time course.

I feel like things are finally starting to be on track for me.  I  haven’t got the appointment for the brain scan yet but I am working on the  assumption that it will  not  sh0w any problems.

OH and I are starting to make plans for the rest of the year – its YDs 21st birthday in april – unfortunately falling while I am still having the vinorelbine treatment.  We have promised her a trip to The Gold Coast in Australia to go to the theme parks there.  We are looking at taking her in the September school/uni holidays or just before depending on my uni workload.  OH and I will also have a holiday just for ourselves in Samoa in July.  It’s another destination that has been on my to-do list as my father although NZ European was born there and we are going as a celebration of me getting through the recurrence. 

The other interesting thing happening is OD is moving in with R into their own rented house (OD is still going to be living quite close by -in the same part of town) in a weeks time.  OH and I will officially be empty-nesters.  Although OD has lived away from home before we have up to now had at least one of the three at home.   Its going to be interesting adjusting to OH and I being on our own completely.  I’m looking forward to this next stage in our lives.

Isolation

Well, what a weird few weeks I’ve just had!

Three weeks ago I was feeling really healthy (or as fit and healthy as you can feel on chemo ). I had started to get into the routine that this chemo has me on which is chemo on Thursdays, feeling yuck Friday, tired Saturday and Sunday and then pretty good the rest of the week.  I had even started to try and improve my fitness by using OD’s Wii Fit and OH and I had started to go for works in the evenings when I was feeling up to it. 

 On Thursday 21st of January the oncology nurses rung to say my neutrophil count (to do with my white blood cell count – the ability to fight infections) had come back a fraction on the low side but if I wanted to I could come in to the hospital they would repeat the blood test to see if  the count had jumped enough overnight for me to continue with chemo that day.  My friend CW had offered to take me to chemo that day and so off we went. I had my blood test then we went and had lunch at the hospital cafe while we were waiting for the results.  The results weren’t good enough, the count had climbed slightly but not enough for them to risk doing chemo so they sent me home.  On the way home we decided to stop off at the mall and do a bit of window shopping, I felt really good and got told off by CW for walking too fast!

On the Friday morning I woke up with a stuffed up nose , Saturday I was more congested, and Sunday likewise. On Monday the 25th the congestion continued and as I was standing at the dining room table sorting through some old bills etc I started to feel very light headed and dizzy . We are advised to ring the Hospital if we are feeling sick so I gave them a ring and they advised me to go in.  I expected them to just confirm that I had a head cold and send me home but by the time I got in there (Neice S took me) I was coughing persistantly and was very short of breath.  It was the breathlessness they were the most worried about.  They admitted me and and did a chest xray that day.  It was clear so they then did a CT scan on the Tuesday.  They cancelled the outpatient CT scan that I had been scheduled for the following week and combined it with this investigatory one.  CT scan also showed nothing wrong with my lungs,  – they had been worried about a possible blood clot, or the node behind my ribs growing and possible impacting on my airway – fortunately none of that was seen on the scan. 

I was still breathless and coughing so they brought in the respiratory doctors on Wednesday.  While the respiratory dr was examining me he recieved a phone call and while he was on the phone I took the opportunity to hop off my bed and go to the toilet.  On hearing my coughing fit as I moved and the coughing fit as I got back to bed as he finished his phone call he said to me “That has just given me the diagnosis – I think you have whooping cough”  Whooping cough is a notifiable disease in New Zealand and as a contagious disease plans were then quickly made to give me a single room by myself (I had been in a 4 bed ward room)

They changed my antibiotic to one that targets whooping cough and I was told I was going to be in isolation for 5 days.  I am just glad I enjoy my own company and that I enjoy reading!   The cough was being kept under control by nebulistions given regularly through the oxygen mask.

 By Friday boredom was starting to set in. I got OH to bring my laptop up and some DVDs and also organise a mobile broadband modem stick so that I could access my emails and facebook and so I could let more people know what was going on.  The nurses ,docors and visitors all had to wear masks while they visited me – it was a slightly surreal situation.

While I was in hospital I got the notification of  my acceptance for Uni. They have acknowledged that I have some health issues and I am going to meet with them to, in their words, “sit down with a staff member and plan best how we can manage your progress and engagement with the course” so I am really happy about that.

When my isolation ended before the doctors let me leave hospital they did an echocardiogram of my heart just to check what effect the herceptin was having on it and I’m pleased to say that is looking good too.

 They sent me home Tuesday night with instructions not to have any more chemo until I’d had another assessment by my Oncology team (this coming Tuesday) so hopefully it will be back to chemo this coming Thursday after 3 weeks off.

SinceI have been home my cough has subsided and apart from feeling extremely tired and sometimes a bit woozy I have gradually returned to feeling more like myself.

The only other test they are going to do on me in the near future is a brain scan.  I have been having quite a lot of bad headaches and although they think they are just stress, chemo and illness related they are wanting to check that there is nothing sinister going on in my brain.  I am not allowed to drive until the scan is done and I haven’t got the appointment yet as it is being done as an outpatient procedure.  So that is going to be a bit challenging to my independent way of doing things.  Luckily friends and family understand the situation and are being helpful in that regard but if Uni starts before I get the all clear I can also just rely on trains and buses.

The ban on driving has made me behave myself this week and have a very quiet week at home since I got home from the hospital and I think I am probably better for it.  I just hope I have no more episodes like this one while I am on this chemo