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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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2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 15,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.

Click here to see the complete report.

Downs and Ups

No chemo again for me this week… the strangest thing happened and instead of my neutrophils rebounding as we thought they would with no chemo the week before, instead they actually went lower – sliding from 0.9 to 0.5 which meant definitely no chemo for me this week.  I hadn’t felt like they were down that far, in fact I had been commenting to C about how I had so much more energy with not having chemo.

I have my next oncologist appointment on Wednesday so we will have to discuss where we go to from here.  Do we decrease the dose, carry on with the dose we have got and  hope the neutrophils behave themsleves enough for me to get adequate amounts of the chemo even if we have to miss the odd week or do we switch to the only other chemo I’ve got left to try.

I must admit it worries me a little that if I am not having chemo it is giving the tumours a chance to grow some more,  but hopefully if it is having that much of an effect on my blood count then it will still be knocking the tumours back as well.

My hair is taking longer to fall out than we expected but this week when I have been rubbed my head I have had a palmful of short hairs coming off. My buzz cut is looking very patchy.

my patchy scalp

But I have a variety of hats to cover it up with such as these turbans that I found in a young womens fashions store.  I’m obviously ‘on trend’ for Summer LOL

one of my trendy turbans 🙂

My face is looking a little rounder from the steroids causing water retention but other than that I’m quite happy with the way I look when I am out and about.  Having gone through hair loss before definitely makes it easier this time.

The upside of not having chemo for the last two weeks means I have felt a lot more well and energetic over the Christmas /New Year period.  I have had more energy to go out shopping with YD and C while YD was home for a few days for Christmas.  I travelled to the other side of Auckland to help MH (one of my uni friends) celebrate her 50th birthday on the 30th and celebrated my own 49th birthday with a lunch out with family on the 31st.  Apart from having to take my regular pain killers I have felt rather good.  And to a certain extent you ignore pain and discomfort if you are busy or having fun.

Today is the first day of 2012  – I am both excited and a little concerned about what the next year will bring me.  But I am already starting to plan my 5oth birthday party for 364 days time 🙂

Happy New Year Everyone!!

 

Merry Christmas

Merry Christmas Everyone!!

our Christmas tree

We had a smaller immediate family Christmas Day yesterday with OH, myself OD, MD, YD, OD’s R, MD’s boyfriend A, and our ‘French daughter’ (our AFS exchange student from 2006 ) C.  So our smaller family Christmas was bigger than it usually is. 🙂 This included bacon sandwiches for breakfast and  a more formal sitdown dinner in the early afternoon.

We have an extended family get together this afternoon/ evening with Sis M and her family, R’s family, and Niece S’s in laws as well.  This is more informal, with everyone bringing some Christmas dinner leftovers and is a very relaxed time.

I could have dwelt on the fact that this year I am metastatic and we dont know how many more Christmases I have got but  C and another exchange student N both arrived on the 20th of December.  (N is staying with her host family but visiting us often – just the same as it was when she was here in 2006.) N dropped in to see us last evening as well to exchange presents.

With C and N arriving so close to Christmas – C is staying with us until the end of July 2012 – It has added a new dimension to our Christmas preparation and celebration and has been exciting for us all.  I have chosen to concentrate on these and the other more positive aspects of Christmas instead of feeling down at all.

YD is home for a few days over Christmas as well so we are fairly busy.

Although it is not necessarily good for my health, I did not have my chemo that was due on Thursday because my neutrophil and white blood cell count was too low.  But the upside of that was that I have not had to deal with the side effects – nausea and suchlike – for the Christmas period.  So it is quite a positive thing in my book

I hope everyone else has had a good Christmas too

Several mini-posts

I have quite a bit to tell you but none of the following topics warrant a long enough blog post to themselves so I will break it up under headings

‘Chemo chauffeurs’

With my chemo being weekly and if the Adriamycin works I will be on it till April so if any of my more local friends want to book a Thursday to keep me company at Auckland Hospital  – its only a very quick chemo takes about an hour or so and the appointments mean I’m at the hospital about 11, 11.30 – 1ish – let me know so I can add you to the roster of chemo chauffeurs.  We are all good until mid January at the moment, MD, OD, OH and JMJ have all had turns, and the girls and OH can take me if no other volunteers but just thought I would put it out there to see if anyone else wanted to volunteer. Ring or text me if you are interested.

Guess my Neutrophils

As the Adriamycin is another chemo like Taxotere and Vinorelbine that can affect my immune system I have to keep an eye on my neutrophil (new white blood cells) count.  Above 2 is normal (around 4 is usual) and if it drops below 1 I can’t have chemo.  With the past experience I have had I am getting pretty good at gauging what level I’m at but I realised just how good yesterday.  Since I’ve started Adriamycin my blood counts on a Wednesday before next chemo on Thursday have been 4.5 after the first chemo and 1.7 after the 2nd.  When talking to RI (Cancer Society Liaison Nurse) when she rang to check on me on Wednesday afternoon I said that I felt they were possibly a fraction lower than the week before from the way I was feeling and that I thought they would be about 1.5  – Official result yesterday: 1.49 – how good am I at gauging it???!!!

Other Chemo side-effects

As the toxicity builds the nausea and other side effects are becoming a little harder to ignore  – We are experimenting this cycle with adding another med to the mix and seeing how it goes. I have to take steroids the day of chemo and the 2 days following to counteract allergic reaction and they do tend to help with the other side effects.  I actually feel more fatigue, nausea etc Sunday Monday.  Afternoon naps have become my friends.  I am still doing my Cancer Wellfit gym program and I know that is helping keep my fitness levels up and helping me cope.

Hair today, gone tomorrow

I bit the bullet and got my hair shaved at my hairdressers on Tuesday, it is just starting to thin in patches and should be all gone by Christmas.  This time is way less traumatic than losing my long curly hair I had all my adult life was the first time, and I actually went by myself to the hairdressers on Tuesday.  As I was saying to A, the hairdresser, part of that was purely psychological.  I am in control of so little at the moment as far as ‘Gertrude’ and her spawn in my liver go, that this was one thing I could control and could decide when to shave my hair and go and have it done  by myself.  It was very empowering in a way.

the shaved heair look - its all the fashion 🙂

apolgies for the typo in  the pic caption it won’t let me edit it and change at the moment

one of my favourite hats 🙂

Goodbye Judy

Yesterday I learnt that my fellow IBC ‘sister’ Judy had died. I shed some tears for her because even though we had never met we had shared our stories and lives with each other through our blogs then twitter and facebook. It happended very fast after she found out she had more progression in her liver tumours a few short weeks ago.   She wrote her story at ‘Just enjoy him’.  I have other IBC sisters also going through very rough times at the moment, Susan (@whymommy at ‘Toddler Planet’) and one of my New Zealand IBC ‘sister’ K in Christchurch (who by a stange twist of fate has my niece as her nurse who pops in to see her at home) .  I also know other women with BC who are facing bigger hurdles than I am, Ann (http://www.butdoctorihatepink.com/) and Natalie ( http://www.helpnat.com/).

Judy and Susan and Natalie all have younger children and that breaks my heart a little for them and their children.  One thing I am grateful for is that I got to see my children grow to adulthood – I may not live long enough to meet all the grandchildren but I know that I have done my best to leave my girls well prepared to bring up their own children, and I am content with that.  Even YD is in a place and stage that I feel ok about it.

Reading about these women and/or having them in my life puts my own position in perspective and makes me more determined to make the most of every moment I have left.  When talking to LW last night I actually invited her to my 50th birthday party – still over a year away – late December 2012, and I am setting goals like that and ODs wedding June 2012 as  dates to still be around for.  Any of you that can make it  are invited to my 50th.

I will miss Judy who was the same age as me – she had a wicked sense of humour which shone through on her blog and facebook, and my thoughts at this time are with her family  – RIP Judy

Christmas planning

I have been a busy girl this week – using the most of the ‘good’ times that I’ve had this week to get myself pretty well set up for Christmas – nearly finished the Christmas present buying just need to pick a couple of things closer to the time, have picked up the turkey and will pick up ham this coming week. I feel relatively realxed and with a collabrative effort from myself, OH and the girls I think this Chrismas is going to turn out pretty well.

It’s also going to be an exciting Christmas due to the fact that we have our French daughter and one of our Paraguayan daughters arriving on the 20th. C from France we hosted for a short stay in 2006 and she is coming back to live with us for 6 months and do a semester at University of Auckland towards her degree.  N from Paraguay we were liaison family for the same year (2006) – she was hosted by another family for her year stay but we had a lot to do with her and she stayed with us occasionally over that time – she is coming back for a 2 month holiday and will be staying with us for some of the time as well.  All our exchange students though AFS (a voluntary student exchange programme) are very much our daughters – part of our family, and I can’t wait to see them again.

Having had my third weekly Adriamycin on Thursday I can feel the toxicity levels have built up – I am having to take a few more anti nausea pills etc to keep the side effects at bay but so far so good.  My hair should start falling out this week and I have booked to get it shaved on the 13th.

I managed to go to my ‘Cancer Wellfit’ programme on Tuesday and Thursday last week and I am amazed and my trainer is pretty impressed as well how much my fitness has picked up in the 3 and half weeks I have been going.  I am pretty proud of myself.

I have had evenings out on Sunday and Tuesday since my last blog post and find I am managing the Christmas socialising by pacing myself and having afternoon naps if I need them. The socialising is tiring but enjoyable and people understand if I am not too energetic.  I have a 40th birthday party tonight and OH’s Birthday BBQ and tree decorating with YD tomorrow so will have a nap this afternoon and a quiet day on Monday to recoup energy.

I will just share with you a surprise christmas gift that just got dropped off into our letter box by Accent Photography , Katrina that did our family portrait photos earlier this year.  she has taken some of our favourite photos from the shoot and presented them as a 2012 calendar in a CD case – the case then becomes the stand – what a cute gift idea!!

surprise christmas gift calendar

 

 

Away and laughing

Since my “spaced-outedness” settled down. I have found I have been able to get out a bit more and do things. I also know that I have about a four-hour window after chemo that I feel ok in so I am making the most of my ‘good times’.  I spent yesterday afternoon out  with YD yesterday finishing organising her present-giving.

I spent some of Friday doing a bit of Christmas shopping and on Friday night I went out with OH and his workmates to celebrate one of his co-workers 25-year milestone.  Most of the people who were there were also long-term employees that I know and who I also get on quite well with them and their spouses.  It was at an Indian restaurant so I had to be very careful of the spice level of the food but had little bits of that and filled up with rice and naan.  It was a really nice night and I hadn’t planned to bring up my ‘cancer’ as not everyone knew the latest news but a couple of them asked so I told them exactly where I was at.  They were all very supportive and made me feel really glad I had gone.

I do find it hard socialising when people may not know what is going on with me and some people say the most inane, and inappropriate things if you do talk about it so I try not to most of the time, but on Friday night it was lovely.

One of the things about Friday night was that because I was able to relax, I was laughing a lot and I had several people comment how much they always remember me by my laugh.  That I have a great laugh or giggle.  I have also had that comment lately from a lot of other sources.  I can’t help thinking that if that is what people remember about me that is a really good thing.

Maybe I should use it as an epitaph

 

Adriamycin – week 1

I started on the Adriamycin a week and a bit ago now so thought I would update on how the first week went.  For most of it I was feeling very tired, sleepy and spaced out.  We don’t know whether it was a combination of the new painkiller regime and the new chemo but it really knocked me for six.  The nausea was kept under control by the steroids and antinausea pills but I do need to carry stuff in my handbag all the time to keep the meds topped up. It has been quite an appetite suppressant as well, my taste buds have started to revolt and I am having to make myself  eat at times. (ah well – I’m classed as overweight so it won’t hurt to lose a few kilos) I had a bit of a weird reaction in that I was actually most nauseous on the Tuesday – 5 days after chemo and also went a bit cold and clammy – so we are wondering whether that was unrelated to chemo.  I was feeling like a box of birds on Wednesday though.  I have to get blood tests every Wednesday before chemo on Thursdays and I am starting to get to recognise if my white blood count is low from my problems when I was on Taxotere and Vinorelbene.  I knew by the way I was feeling on Wednesday that my neutrophil count should be in the normal range and it was.

As the chemo toxicity levels build up over the next few weeks I am going to have to keep an eye on my blood counts though.

I must admit with feeling so spaced out  I started to cut back on the dose of the painkillers.  Even though they are the smallest dose I have a bit of a psychological block to being on morphine.  I don’t want to admit that’s where I am at. Combined with that  is the knowledge that within a couple of weeks I am going to noticeably look like a cancer patient again (losing my hair) and the fact that when the Cancer Society Liaison Nurse visited and checked up on me on Monday,  she brought up the subject of Hospice.  It is not that I need it right now but she thinks it would be a good idea for me to meet with them and find out what they offer so if I decide I do need their services further down the track some of the groundwork will already be done.  All of this was making me look very squarely down the barrel of something I don’t like contemplating too much day-to-day, and it did get me down.

MD took me to Chemo on Thursday and when I was talking to KS, my assigned oncology nurse specialist at the hospital, (she’s not the chemo nurse – she just checks up on me and she’s the person that helps the doctors co-ordinate my care) they both told me off for trying to be a martyr to the pain, KS said that if I keep taking the painkillers regularly my body will adapt to them better.  So I’ve been doing that since Thursday and haven’t had the same reaction as last week.  Thank goodness!!