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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

Very constructive week

Well the third week of my cycle was good. On the Friday at the end of the second week it was like a switch was turned and all of a sudden I was practically normal again. 

I worked for a few hours on the Tuesday and the good news there is Gertrude definitely didn’t react as much as she has when I have been active 3rd weeks of previous cycle.  She is still bigger and gets red and sore but doesn’t get any where near as bad as she did.

Oncologist assessment visit on Wednesday bought lots of constructive/good news. 

1)Because Gertrude seems to be reacting more to the chemo we are starting to look at surgery as the next treatement option followed by radiation. 

2)All the test results were back in from my two little day visits to hospital during the cycle and everything came back normal.  Which means it was purely chemo that was causing the side effects no bugs etc, it will be recurrent for the nest few cycles until I stop the taxotere but at least we know what we are dealing with

3)with surgery as looking as my next treatment I may be able to get something done to both boobs at once in the public health system I will find out when they refer me to the breast surgeons.  I still have private as an option but if they can do what I want in public and in a timely fashion, I may go that route as then my results from the ‘autopsy’ they will do on Gertrude and involved lymph nodes will be more accessible to the oncologists in the public system.  This is important for my staging and them being able to give me some sort on prognosis for the future.

Other good test result news i got this week was that my neutrophil count for my blood test that I do on Thursday (day before Chemo) came back higher than its been during this whole process usually its been around 4 on my thursday tests (normal is between 2-8) this time it was 6 so I might not bottom out so much this time. Here’s hoping!

Part of the reason I havent written another blog entry this week Is because I have been out, busy trying to organise a few Christmas presents as I realise I very few good weeks/days left before Christmas.  I don’t have the luxury of thinking I have two whole months to do my shopping etc done in.  I am doing up a bit of a plan about how I am going to get organised.

OH and I have got into a bit of a pattern for assessment /chemo week.  I like having him there especially for the Wednesday assessment meeting with the oncologist because that’s where we discuss treatment changes, options and all thats sort of thing.

On the Friday for the last two chemo treatents I have actually taken the train up to Newmarket – the first time I then caught the link bus to the hospital,  but yesterday I actually walked up through newmarket and the domain probably about a 40 minute walk (would have taken me less time a few months ago I am definitely not as fit as I used to be.)  Part of the reason I am doing this is that I like to do one last more self-reliant more normal thing before I have the chemo and have to rely on OH or some one driving me home because the chemo side effects start kicking in.  I ring OH when I have been hooked up to the chemo and he comes in and keeps me company for the second half of it and then takes me home.

Last night I ended going out with OD to a fashion show that she had got tickets for free from her work.  the people she was going to take had a sudden change of schedule so she had a ticket going begging.  I thought seeing as it was a purely sitting down and watching activity I could probably manage it and it was nice to get out and see something different. I just dosed myself up with all my side-effects meds before I left home and that kept them pretty much at bay until I got home.

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Unrecognisable

I have had an interesting last couple of days.  As I have felt much better I have gone out shopping for the last couple of days – decided I had better get started on my Christmas shopping on my good weeks otherwise Christmas will came as I am ending my 6th chemo cycle and I won’t have anything organised. 

When I have been in the supermarket  today and yesterday I have bumped into several friends/ acquaintences that hadn’t found out about “Gertrude” and who were having problems recognising me without my long hair.  So I have got used to standing in the middle of the supermarket trying to explain IBC to people.  It used to be a lot harder but I have got used to just being matter-of-fact having had to tell so many people in the last few days.  The weird thing I find about it is that to a certain extent I am less emotional about it than the people I am telling because i have already dealt with the shock (and grief) of my diagnosis where as these people are hearing it for the first time. 

Because everything has happened so fast from my diagnosis – I will probably still be telling people about in  a few months time – most of my closer friends and acquaintances that I have regular contact with know, either from direct contact with me or by word of mouth but because we have lived in the same town all our married life we have a much bigger group of friendly acquaintences that we bump into when we are doing things down town that we know through various school/activities our family has been involved in over the years.

 I have included a photo of my semi-bald look – I had the sides trimmed on Thursday evening because they were still growing and looking a little unruly.

)

the latest fashion hair style 🙂

Decisions

I spoke too soon when I wrote the “feeling of the day” on Monday.  I had had a touch of diarrhea on Sunday and Monday and when it carried on into Tuesday I thought I had better ring the oncology department.  When I rung they said my routine blood test on Friday had showed my neutrophils had bottomed out again so they wanted me to go in to have more tests.  I actually drove myself into Auckland Hospital because I was feeling fine other than the diarrhea. If I had to stay in OH would have come through with MD to get the car but after doing all the tests they gave me some medicines to “bung” me up more and let me go home.  They said my neutrophils had started to naturally climb (since last Friday) so I should be fine.

It looks like I am just going to have to put up with this sort of side effect until December when I go off the Taxotere part of my chemotherapy.

I have made a couple of big decisions about my hair – as I have not lost all my hair and also because I am actually very comfortable in my own slightly bald-headed skin – I have decided not to buy a wig and just wear hats and scarves when needed for the duration.  I have also decided I will keep my hair very short after treatment.  Because my hair looks good either very short or very long and looks very frizzy in the interim, I have decided to not grow my hair long ever again.  OH is a bit sad because he really liked my long hair but he ultimately understands my decision.  I am actually getting my hair trimmed tonight when OH and YD get their haircuts.  I think YD is going to be quite amused by mummy getting a ‘buzzcut’

I have been getting quite worried about the fact that ‘Gertrude’ hasn’t responded quite as much as I would have liked.  I have joined a IBC support network and so I wrote an email to the mailing list to get some feedback as how much respoonse other people had got when they had similar syptoms and similar treatment.  I have had two responses from people with very similar stories to mine and they both say that significant decrease in swelling didn’t happen til nearer the end of the initial chemo treatment.  It has put my mind a lot more at ease. Both of them are about 6 months further along in their battle so it is a great comfort to me hearing their stories.

I am going to work next Tuesday (the morning shift) partly becasue I just want to be a little bit normal but also because I want to see how “Gertrude” reacts to a more normal active day before I have my next assessment on Wednesday so that I can see if Gertrude swells as much as she used to when I worked or whether there is significantly less swelling.  We are going to talk more about what is going to happen next in my treatment – surgery? radiation?

I want to be normal

What an abnormal life I am living at the moment.  On the days I feel normal, I want my old life back but because I have to watch my blood cell counts and getting infections I can’t have my old life.  When I have bad days I am so unlike my usual self that I cant do things properly.

I feel guilty that I can’t be the same mum to my kids that I was before Gertrude. 

Spending time with YD is done a lot less and at a much more sedate pace than before.  I can’t go out with her for a whole day without feeling shattered afterwards. so we have shorter, more sedantary visits – although she doesn’t complain I know she misses the way things used to be. 

I feel guilty that on Sunday it was MDs 21st birthday and as much as she didnt want a big party/celebration because soulja boi wasn’t around to share in the celebration, a large part of the decison was based on the fact that I had chemo on Friday and we didn’t know how I was going to be.  Even though we had my sis M, her OH and my niece S and nephew N around for chinese takeaways it was very subdued, and I wasn’t much of a party hostess.  As much as she says she didnt mind and she would rather have the money that we would have spent on a big party to spend towards a new car- I know she would have liked more of a celebration and I feel guilty that it was because of me she didn’t get it.

OD had to deal with me having a major attack of chemo brain today.  Even though she had told me what she was doing today I still thought she wasnt home when she was, that she had told me she was having to go out when she wasn’t and then forgetting it all again.  It was like having alzhiemers  – it was actually quite scary how bad my memory was.

I went in to visit work on Monday and couldn’t resist doing some work while I was there,  in a lot of ways I probably shouldn’t have because its made me more dissatified with the way I have to do things at the moment.  And even when our manager has a family emergency I cant work to  fill in at the moment and it makes me feel so useless.

hopefully the third week of this cycle I will be well and I will be able to work a couple of shifts.  Its the first two weeks that are so abnormal.  If I stay non-neutropenic I am hopeful that the third week of this cycle will get me back to something resembling normal.

Well at least my counts weren’t down

After getting over my initial upset tummy from chemo, it returned worse yesterday and I ended up a bit dehydrated – we rung Auckland  hospital and they said to go to Middlemore A&E and get them to do a full blood count etc.  Poor OH -didnt even get time for dinner last night – came home from work and then we spent rest of evening on the phone to hospital then going to hospital.  We got home about midnight. 

The good news is that I wasnt neutropenic. – my cell count wasnt in the danger zone so that was good and I was allowed home once they rehydrated me. You tend to realise you are bit dehydrated when they give you 2 1-litre bags of IV saline. I’m going to try eating later on today – at the moment we are just seeing what effect me drinking fluids is having.  

I try not to get frustrated with my body’s determination to make these cycles of chemo as challenging as possible.  I am doing my best to look after myself and do all the right things but my body still seems to have a tendency to react the wrong way and there is nothing I can do about it.  Part of me thinks why am I taking all these anti-nausea tablets etc if they aren’t blimin going to work. 

I still have to worry a little about my cell count going down towards the end of this week but after that I wont need to worry so much – I’m looking forward to that.   I am looking forward to the end of my taxotere chemo because its the one that is causing all the bad side effects at the moment.  3 cycles down only 3 more to go hopefully.

I want to be a glow worm

I’d like to be a glow-worm

A glow-worm’s never glum

It’s hard to be down- hearted

When the sun shines out your bum.

Author unknown

This was on a plaque on by the window of the room where I sit in a lazy-boy armchair to have my chemo.  After having my down times this week, that was just what I needed to see yesterday.

Chemo went well and I felt so good afterwards OH and I went shopping at Botany on the way home.  I managed to persuade him to spend some money on himself; seeing he’s been buying so much stuff for me lately. He bought himself 2 pairs of new jeans and 2 good pairs of sunglasses (although one pair he really needed for driving, I/we bought another pair for him for casual wear and said that was his birthday present from me.  (even though his birthday not til the beginning of December.)

I’m finding the chemo side effects kick in about 6pm on the evening after treatment.  Feel a bit nauseous but that is pretty well controlled by the anti-nausea meds. Unfortunately this time I have a touch of diarrhea, like I had in the first round, if its like the first round it should clear up by this morning.

I have to have a blood test the day before my chemo to check what my white blood cell count and neutrophil counts is to make sure it is safe for me to have chemo, my neutrophil count has to be over 2 for my chemo to go ahead.  After the conversation with the oncologist on wednesday it was a bit disheartening to find out that my neutophil count was only the same as it had been when I got discharged from hospital. It was 2.4 which meant I could have the chemo but it means my white cell count is probably going to bottom out fast and infection is more likely than if it had been sitting around about 4 which seems to be my natural count.  The normal range is anything from 2-8.  It means I am really going to have to watch myself – both in getting an infection from my own native bacteria or natural flora as they call it (although that term makes me think I’ve got ferns or flowers growing inside me LOL) and protecting myself from other people’s bugs for the danger period which is from next Wednesday to Monday of the following week.

My usual Saturday after chemo hot flush of my face and “Gertrude” has started.  It usually starts about midday and lasts for a couple of hours but it has started a little bit earlier today.  It stuck me as I was writing the last sentence how much I use normal or usual to describe my side effects of chemo etc. I guess it’s amazing how fast you get used to things when you have to.

The other interesting that happened yesterday at chemo was that I was sitting next to another lady who had very similar treatment to me for her her2+ breast cancer that had spread to her lymph nodes in her collar-bone. after her initial taxotere/herceptin chemo and surgery etc.  She had carried on having herceptin by chemo every 3rd friday for 3 years  Yesterday was her 55th dose.  As she was NED (no evidence of disease) they said it was her decision whether to carry on with the herceptin (and risk problems with her heart ) or to stop and just carry on with the routine scans and checkups.  She had chosen to stop her chemo. 

 I thought that talking to her gives me more of an insight into what’s going to be happening after this inital treatment stage.  Carrying on with herceptin for that long doesn’t worry me becasuse it’s the taxotere that is causing more of the problems/side effects for me at the moment.

Positivity

Thought I would do a quick post tonight before my next chemo tomorrow morning.  After having a bit of a down day yesterday – I was back to my usual more positive self today.  I am actually surprised that I don’t have more of them – down days that is,  so I will let myself have the odd one here and there. 

I have been given a lot of little get well gifts and I want to especially want to acknowledge the care package sent by my bro and his family, the necklace from our friends J &M in Germany, and the hat I received today from my friend R that was visiting from Adelaide.

Hat from R

Hat from R

I also bought myself a present today; I have decided to start a “pandora” charm bracelet. Just like the child cancer ads where they tell you that kids get a bead for each invasive procedure they have, I will buy myself a new charm bead when I reach the end of a course of treatment.  So I will buy my next bead at the end of these rounds of chemo then another when I finish radiation then when I have surgery etc.  The first bead I bought is a little silver with pink stones version of the breast cancer pink ribbon.

charm bracelet with first charm

charm bracelet with first charm

thinking too much

Just had my oncology assessment appointment prior to my next chemo on Friday. They have decided to reduce my dose of Taxotere slightly so as to not make my white cell count dip quite so fast.  He warned me that I could get sick again this time round as he thinks the first infection was caused by my body’s native bacteria  etc as he said “deciding to have a bit of a party” when my white count plummetted.  Hopefully with the reduction my white cells wont dip quite so low so fast.  I am going to have to watch myself really carefully though.  They think Gertrude is responding to the chemo but say it is too early to say whether or not I will need radiation before surgery or not.  It’s made me think a little bit about the whole situation and that if they do radiation before surgery because gertrude hasnt responded enough – does that mean the end result is not going to be as positive???  All in all a bit of a downer of an appointment but I would rather know the reality than hide behind fake positivity.

Hair, eyes, brain – whats next to go?

I am definitely noticing chemo’s effect on other parts of me other than the hair on my head.  I am losing the hair under my arms and on my legs – thats a good thing!! Not so good – my eyebrows and eyelashes are starting to depart – still have them but sparser than they were.  I havent lost much more hair on my head but are waiting to see what this week brings as it seems to be the third week after chemo that has the biggest hair loss. 

My eyesight is playing up and I’m not sure whether it is just to do with the tiredness or whether its a side effect all of its own.  I got very frustrated when I couldn’t thread a needle this morning. and I have had trouble reading at different times although sometimes I seem to be able to read fine although I find I cant read for as long as I used too.  They also warn you about “chemo brain”  My brain definitely isn’t as quick as it usually is.

Onto more cheerful news – OH, MD and I had a good weekend away.  Felt pretty good and managed to get out and do some activities on Saturday.  We went to a glass blowing studio and watched them make glass scent bottles and bought a vase – which I am not allowed til Christmas as it is my Christmas present. 

We then went to Huka Prawn park -did the tour then fished for prawns.  Didn’t catch any, although several got hold of the line and stole the meat off it before I could pull them in. It was quite fun to do anyway but it would be better to do on a more summery day. OH caught 3. We then went to the restaurant and had a huge platter of prawns to share between the 3 of us. 

prawn feeding

prawn feeding

 

prawn fishing

prawn fishing

Came back into Taupo township after that, where they had a gypsy fair in the domain- We looked round there and I bought myself two more hats – more summery ones with wider brims to protect me from the sun.  On Sunday the weather was worse and rained.  We drove down to Waiouru and stopped off at the army museum as we were early for dropping MD off.  We dropped her at the army camp and then went to Ohakune for lunch we took a detour to the Tangiwai memorial but it was too wet to hop out and look at it.  We picked MD back up and saw Soulja Boi for all of 5 minutes before he was due back at his barracks.  He is looking as if the army life real suits him – looks good in his uniform and looks really fit and healthy.  We drove back to Taupo and grabbed a quick dinner and then drove home. 

I definitely want to get away more but think while I’m on chemo it will be limited to every third weekend. Part of me would love to take off for a week on my own to some secluded beach or similar but know that it is not wise  to go on my own.

Well thats all for now

off we go

my sparkley blue hat

my sparkley blue hat

my sparkley blue nails

my sparkley blue nails

Just a short post before we leave on our Taupo trip. 

Im feeling much better and am really looking forward to our trip away. 

Im taking daily pictures of Gertrude but sorry I’m not putting them on here.  Its something I thought about because of a question one of the oncologist consultants than looked after me in hospital asked if we had photos from before I started treatment. and i thought due to the nature of Gertrude it might be interesting to see if the chemo does make a difference.  Dr H said we should see an  improvement in the level of inflammation by this round of chemo but I’m not seeing any real improvement yet.  Its isnt getting as sore and red as it used to some days but I am also not doing very much and when I do more it is still getting quite aggravated by it.  It will be interesting to see how it copes with being more active this weekend. 

All the oncologists say they cant feel the nodes in my neck and armpit,  so at least the chemo is working on them. 

I’m wearing nail polish that matches my outfit and my hat today and I’m wearing my good jeans and high heeled ankle boots and even if I do say so myself I think I look good for a cancer patient.

Catch you on Monday when I get back