• Pages

  • comments

    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
  • Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 59 other followers

  • visitors

  • SUSAN’S ARMY

    No Princess Alone button

Not doing what I’m told

I got another cold this week.  My blood counts are falling slightly but my infection fighting white blood cells are still within the normal level so thank goodness I didn’t end up having to go to my old haunts Acute Oncology and ward 64.  It started off as a head cold earlier in the week and by Wednesday had moved to my chest, OH and MD have now caught the same bug so are not happy with me.

Because I had my exam on Thursday I thought it best to go to the doctors on Wednesday,  Dr BC, our GP, was not happy with me still intending to go and do my exam the next day.  The hassle of trying to get an aeggrotat pass or compassionate marking though meant going to the exam was the less stressful thing to do.  I didn’t remember a lot of details from my studying but think I have done enough to pass the paper.  The exam was worth 50 marks with 1 compulsory question and then a choice of any 4 out of 6 optional questions.  Looking at the exam I knew enough to answer 3 of the optional questions and thought if I had time I would come back and hope that the answers to a fourth question would come to me.  I didnt do a fourth question.  Not only would my brain not cooperate but the sensitivity from the xeloda made my hand susceptible to being rubbed by the constant writing from the pen.   Writing constantly for 2 hours had actually created a very sore spot on the web of skin between my thumb and index finger and I knew if I kept writing it would  actually blister – it is still sore today (2 days later).  I feel like I let myself down a bit by not finishing the exam properly and I know if I asked for compassionate marking they would give it but I am hopeful I will get enough marks to pass the paper regardless.  I will have to wait a couple of weeks for the marks so it will be interesting to see what I got.

After the exam I had the choice of making my way home or staying and hanging out with my classmates to celebrate the end of semester.  The judicious use of ‘cold and flu tablets’ meant my head although fuzzy was still functional  Again I did what I probably shouldn’t have and decided to spend some time with my friends.  After a shared afternoon tea we went 10 pin bowling, another something I probably shouldn’t have done, as it is using my lymphodema affected right arm.  I was wearing my lymphodema sleeve so I decided to risk it, knowing that I would have to do extra lymphodema treatment to my arm to make up for it.  Sometimes you just have to do things, knowing the risks and being prepared for them.  Bowling also exacerbated the sensitivity on the fingertips of my index and middle fingers and they are still a bit tender today.  The other issue is that because of the stance you take for bowling my xeloda sensitive feet also decided to play up.  I was wearing my comfortable shoes not the bowling ones but I still got blisters on the balls of my feet and have been barely able to walk the last two days.

Such was the price I paid for being naughty – but if I had the choice I would make the same decision again.  It was a fun afternoon doing something that I have not done for a number of years and one thing that dealing with ‘Gertrude’ has made me realise is that I need to grasp those opportunites when they present themselves.

As usual I am still waiting for scans to be scheduled – I get so frustrated with the scheduling department of Middlemore radiology.  they jsut dont seem to get their act together to give timely appointments.  Dr H has given them a time frame that ends next Friday so if I dont hear anything by Monday or Tuesday i will be ringing up.  I resent the fact that on top of dealing with my treatment I have to chase up appoointments that should have already been scheduled.  I know they are a busy department but their scheduling system leaves a lot to be desired.

Editted: the scan appointment came in the post today – scan on Tuesday. Glad Ive got appointment but still dont like that they leave it so long to schedule and then give you virtually no notice.  Just as well I havent got exam or anything else on Tuesday

My cold is gradually getting better, I can feel it lifting off my chest with the help of the antibiotics and if it wasnt for my feet I would probably be much more active today.  Hopefully in a couple of days both my cold and my blisters will have resolved themselves and I’ll be able to get out and enjoy myself.  Although I am getting out tomorrow to visit niece S.  I think I will have to get OD to drive though.

P.S I had thought about wearing my ‘ I have chemobrain what’s your excuse?’ tshirt ( as shown in my  blog header) to my exam to psych out all my classmates but decided to be nice 😀

Bobbling

That was actually the term my oncologist used at my appointment on Wednesday to check my progress and give me the next round of xeloda tablets. You’ve got to love it when they use real ‘medical’ terms like that.

It was in reference to my CA 15-3 tumour markers in my blood – with the first two cycles my tumour markers dropped rapidly – the blood test for my third cycle shows it has basically stayed the same.  Dr H. says that as we get closer to the normal range (<30 – I’m currently in the 40s) it is quite often the case that the results will start ‘bobbling’ – i.e go up and down but not fall further than below 40.

He says that is why it is so important to do another scan, because even though my tumour markers are low they are not a true indication necessarily of what is happening.  My tumour markers have always been low even with widespread cancer in my lymph nodes the first time. 

So we live in hope that this next scan – which was ordered after my second round but still not scheduled ( which he has now given them a specific time frame – that it must be done in the next two weeks) will show that the xeloda is working on the tumour in my liver and that nothing else is showing up anywhere else.

He has given the go-ahead for us to book the Dreamworld trip but has warned that depending on what the scan shows I may have to cancel my ticket at the last minute.  but he agreed that it was better to get everything booked now.  He was pleased that I had thought things through and tried to arrange it for the week I am off Xeloda at the end of July.  So all going to plan we, (Myself, OH, MD and YD) will be in Queensland from 19th – 26th of July arriving back just in time for my next oncology appointment on the 27th to start my 6th cycle of xeloda. 

If the scan shows something that necessitates a possible change of chemo we will do that in August.

Going at this time does mean I miss the 1st class for one of my second semester papers and the 2nd class of the other but I can afford to miss a class then, where as later in the semester it becomes harder when assignment due dates etc have to be taken into account.

Bobbling sort of describes my life in general at the moment too.  I have some good days where I feel ‘normal’ and energetic and get things done like Wednesday (onc appointment then staying in to do some study at Uni and pick up an assignment -B+ for the ‘family violence’ assignment I had struggled with in this post) Thursday (doing 3 loads of laundry before going out to lunch with a friend – thanks JMJ) Friday (visiting travel agents and getting this trip organised) and some days where I struggle (Tuesday tired and forgot completely about a lunch date with AW after her exam) Yesterday after sleeping 11 hours of fractured sleep between 8.30pm Friday and 11.30am Saturday (got woken up by MD at 10pm and didn’t get back to sleep til 1am, then had to get up for tablets but only stayed up for an hour – long enough to eat breakfast and have tablets and went straight back to sleep) all I wanted to do was sleep the rest of the day too – it’s quite scary being that tired/chemo-fatigued.

Today is a better day, what a pity I have to spend some of it studying for my exam on Thursday.  I know I could apply for compassionate marking or an aegrotat pass and get a passmark for the paper as I have already got an A- and a B+ in the two assignments worth 50% of the paper but I feel I should do the exam.  I want to pass the papers and know that even chemo-impaired I gave it my best shot.  I should find out soon what my marks are for my other paper that was totally internally assessed – I’m just waiting on one last assignment mark for that.

I have to say I am looking forward to the time after Thursday.  No worries about Uni or anything until the 18th July.  I might actually have the time and energy to catch up on  a few other things 🙂

 

 

 

Lazy? or just forgetful?

Last Thursday, I had nothing to do for the day and thought I’ve been so lazy this week but then when I went back over the week I realised that I had only been particularly lazy on Wednesday and Thursday and that I had a big weekend planned so that I needed to pace myself.  With chemo-brain I actually find it really hard to remember what I have done from day to day.

What have I done lately …. with not having university classes and also not having an exam until the 23rd I have only just started study today and didn’t touch my books at all last week.  Last Monday was a public holiday so it was a slow start to the day for everybody – I was still in my pjs (one-boobed) when my BIL who was up from Invercargill knocked on the door.  (After seeing me at my best on Saturday when we had picked him up from the airport and delivering him to my Mother-in-law’s where we spent most of the afternoon.)  Oh well – welcome to the real me 🙂

Tuesday I was planning to spend at home but had a last minute change of heart when a twitter friend said she had a spare free ticket to a movie.  So I decided to go and meet up with her and another women – neither of whom I had met before.  I am a lot more spontaneous and fearless than I used to be.  We saw “Water for Elephants”. 

Wednesday was my lazy day.  I read books  and played on computer.

Thursday I ran a few errands.

Friday I  got my eyebrows shaped and tinted in the morning – my eyebrows are the one place you can tell this chemo is having a thinning effect on my hair – unfortunately not thinning in a great shape.  the tint was to make what was there more noticeable.  I’ve become a firm believer in ‘Look Good, Feel  Better’  although it seems a little superficial, it definitely makes me feel less like a ‘cancer patient’  and did a couple of other errands.  Because OH had the day off – in the afternoon we went to the latest ‘X-men’ movie.  We decided to spoil ourselves by buying the ‘La premiere’ seats which give you meals bought to your seats and reclining chairs – I have to say I have become a fan of reclining in comfort to watch a movie on the big screen.

Saturday was a very busy day.  Blood tests then picking up both OD and YD from their respective houses and then down to the train station.  We spent the day in Newmarket and I managed to pick up a ‘Mother of the Bride’ outfit in a sale for a third of its usual cost.  I hadn’t actually planned to buy as the wedding is approximately a year away, but when OD and I saw the perfect outfit – we thought I may as well get it.  Did lots of walking – so much so my xeloda affected feet were very sore by the time I got home.  I think next time I do that much walking I need to wear my sneakers. Comfort over style in footwear may have to win out for the remainder of my time on xeloda although I have bought some very cute and comfy satin lined slippers for wearing round the house

My feet weren’t the only thing that suffered on Saturday.  YD likes to hold onto my arm when we are walking.  I have had to train her to hold onto my left arm as my right is lymphodema compromised.  Unfortunately she tripped over the curb and started to fall pulling me with her.  I managed to stop her falling completely but in the process my back got twisted a little – It is starting to settle so I think it is just a muscular thing rather than my spine being out of alignment but I have had to add diclofenac to my usual pill tally until it stops hurting completely.

Sunday was  another OD & R wedding related day.  We met with them and R’s parents to look at a possible wedding venue – OD being the organiser that she is, would like to have a venue and a date before she decides on anything else.  We all like the one that she and R liked and so they will make a definite date there for in about a years time.  They have just got to check with prospective bridesmaids and groomsmen tha they will be free then.  We then went out to lunch to celebrate the engagement with both immediate families – we the parents had met each other but they had not met MD and YD and likewise R’s brother hadn’t met all of our family.  By the time we got home and then delivered YD back to her house the business of Saturday and Sunday had caught up with me and I had a very quiet night.

Monday today – after a slow start to the day I had intended to go for a walk down town this afternoon but I ended up staying in and watched TV and computer updates for what was happening with more big earthquake aftershocks in Christchurch.  

Tomorrow – I will study more and then on Wednesday I will have my next oncologist assessment.  Hopefully Dr H will give the go ahead for the Dreamworld trip – and the next round of Xeloda

Not really busy all the time, but not as lazy as I thought either.

 

A perfect Sunday afternoon

I want more afternoons like this please…..

It has been an absolutely gorgeous day today weatherwise and after being stuck inside with a cold most of last week I was determined to get out and make the most of it.

OH and I went for a slow wander round the botanical gardens

Iceland poppies

 

 

 

 

 

 

 

 

 

 

After wandering for about an hour and a half I was too tired to walk any more but didn’t want to waste such a beautiful afternoon so OH and I drove out to Maraetai and had a late lunch by the beach and sat just looking at the water for a while – the sea was so calm – amazing day.  Could I please order more of them this winter 😀

I had a cold…

…and feel like I lost a week.

After resting to get rid of built up fatigue,  I had high hopes for last week.  It was the last week of Uni classes before exam/study leave and I had booked a haircut and colour. I managed to get to the haircut but that was about the sum total of what I achieved last week.

Last Sunday I developed a headcold. One of those ones where your nose turns into a faucet and nothing you can do to turn it off.  One of the more light-hearted moments of my week was seeing the look on the pharmacist face at our nearest shopping mall pharmacy,  (Our usual pharmacy isn’t open on a Sunday and OH and I were out – shopping for a video camera) when I asked for some cold/flu tablets to stop my nose running. ” Are you on any other medications?”  he asked.  “Yes , blah, blah blah (….long list)” He looks at me (“what?”) “I’m on chemo for metastatic breast cancer” “OOh!”  – not the usual answer they get to that question and the poor man was a bit flustered.

My headcold continued with my nose only slightly bought under control by the tablets.  The funny thing was that my fatigue had lifted, and the rest of my body felt energetic but my head couldn’t keep up and felt like it was totally ‘non compos mentis’, ‘totally out to lunch’ as it were.  I ended sleeping most of Monday, going to my haircut in the morning then sleeping Tuesday afternoon and Wednesday , instead of going to my uncle’s funeral, was another day spent in bed.  If I stood for too long I would feel very light-headed. 

Thursday was the day that I finally felt like I was turning the corner.  Thank goodness!!  I debated whether to go to the Doctors or ring the hospital as you are supposed to when you are unwell –  but I wasn’t running a fever and having been through chemo twice before and ending up in hospital quite a few times with infections related to low blood counts – I am getting quite adept at gauging if I need medical attention or not.  It was definitely a headcold virus, not the flu or anything and I knew that if I stayed at home and kept warm and away from other people’s maybe more serious cold/flu germs I would be OK.

One thing that has annoyed me this week, partly because I have been home more to answer the phone is an anonymous Insurance company recorded message cold calling asking us to change our life insurance.  Now remember I’ve got metastatic cancer so no insurance company other than the one I have always had a small policy with is going to want to touch me with a ten foot barge pole.  Three times this last week I have answered the phone to a recorded message saying how we are wasting money with most life insurance companies and if we leave our name and number after the beep they will get back to us with a ‘very competitive offer’.  No name of company mentioned unfortunately otherwise their head office would be getting a call from me.  I usually just hang up on these sort of phone calls but this week I let it run through its spiel twice and waited for the beep – I left my name and number but also a little message about how I thought it was pretty stupid and insensitive for them to be cold calling with a recorded message and that I really didn’t think it was appropriate for them to be calling me as I have metastatic cancer and they wouldn’t want to insure me anyway and if they would like to call and apologise they could.  ‘Do you think I’ll get a call??’ – I think not.

One thing I did accomplish in the last week is writing a very abbreviated version of my journey so far to go on the Breast Cancer Aotearoa Coalition website  and OK a press release to go out about the release of the videos in July

My ‘Get Out Gertrude’ story on BCAC here

Now my cold has finally dissipated I hope to use the time off before my exam to both study and get out and get some more gentle exercise – going for walks on the fine winter days if I can, and trying to get back into my ‘Pink Pilates’ program.  It’s a fine day today so I may drag OH out for a walk round the botanic gardens or somewhere.