• 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

Relatively normal?

Well, I am sitting at the computer desk and feeling relatively normal.  My energy levels have definitely been back up this last week and I have been busier than usual I’ve done more cooking, housework etc this last week than I have for the last few months and generally enjoyed feeling more like myself.    The dentist took the two remaining broken teeth out last Thursday and my mouth is still a bit tender from that so eating softer foods at the moment.

On Friday evening OH and I went to the movies and had a quick bite to eat at Sylvia Park.  We had to choose a restaurant that had softer food for me on its menu. 

  On Sunday YD and I went out  to the beach (Maraetai) and had lunch in the cafe there, because it was such a glorious day, then we visited her Grandma W (my M-I-L) we talked about its not completely obvious that I haven’t got a lot of top teeth because I dont show a lot of teeth normally when I talk and also my pronunciation isnt too lispy because I have got a high arch to my mouth so can still sound out all my consonents correctly.   Because the dentist wants to wait till my mouth has completely healed I probably wont get my teeth until after surgery.  I have made an appointment to get measured and molded for my new plate on the 9th April.

When I had taken YD home to her house I came home and (without knowing where I had taken YD for lunch ) OH asked if I wanted to go out to Maraetai and have dinner out there by the beach.  I burst out laughing and said yes of course.  It was lovely sitting in the cafe and watching over the water as dusk settled. 

the view from the cafe

the view from the cafe

As you see we are all making the most of this return to normality before I am out of action for a couple of weeks when the surgery is done. 

The infection is continuing to heal and today the district nurse wanted to try a different dressing on it , just to help it heal all the way to the top.  It’s not the silver antimicrobial dressing so I am a bit nervous about another infection developing but the incision/infection site is drying up a bit too much to use the silver dressing effectively.  with the new dressing you press the plaster/dressing right into the wound (now only a few millimetres deep) and you can actually see the site through the dressing.  MD was surprised to see how shallow the site now was compare dto how deep it had been originally.

I see the breast surgeon this Thursday to make the final plans for my surgery.  She last saw me on the 22nd of December (where she was a little worried about how my portacath looked) and wanted me to get it checked out when I went to the hospital the next day for my radiation mapping and simulation. …. and we all know what happened after that.  She is going  to be surprised to see that I have been dealing with the infection ever since.   I am hoping – crossing all my fingers and toes  – that with the infection so close to being fully healed she will give the go -ahead for the surgery in 3 weeks time. 

The other thing I have done this last week is buy myself some over-the-counter reading glasses –  just the lowest strength ones .  I have been having trouble with my eyes since i started chemo and they still haven’t returned to normal.  I talked to an optometrist but they do not want to do an eye exam and prescribe glasses for me until my oncologist says that my eyes will have stabilised, so I have just bought this pair to get me through until the oncologist gives the go-ahead.

my glasses

my glasses

I have given some thought to the fact that the person that is coming out the other end of this is quite different , both physically and mentally than the one that went into it.  I am going to have fun reinventing myself, keeping short hair, maybe glasses,  and buying clothes that I don’t have to accommodate a huge bust in.  When I come out the other end of surgery and recovery I will post a before and after shot.

I will let you know on Friday what the outcome of my breast surgeon appointment is.  On Friday afternoon I am going away for the weekend with YD.  I took her to Rotorua last year for a birthday treat and this year we are going to the Bay of Islands.  What she wants most for her birthday is some “Mum and me time”.  I suggested OH came to help with the driving but she wanted it to be just the two of us.  We are spending Saturday and Sunday up there and returning on Monday so it is not too rushed for either of us.  The only major activity we have planned while we are up there is going on one of the “dolphin discovery” boats.  Other than that we will just see what we feel like doing.  Her actual birthday is next Wednesday and she will be 20 years old.  I will no longer have any children/teenagers!!!

OMG!!!

OMG!!!! is how I feel at the moment. 
I went to see my GP (family doctor) yesterday for the first time since he sent me to the private breast clinic back at the end of July last year where I got my diagnosis.  I have been so busy with other doctors and treatment since then I hadn’t had a need to go to see him for anything. 
I gave him a hug and thanked him for sending me to the breast clinic and me being diagnosed so soon.  He looked sheepish and said “It was more by good luck than good management – I thought I was looking after an infection”.  He didn’t have a clue that my big enormous “mastitis looking” breast was Inflammatory Breast Cancer.  He said if it hadn’t been as bad as it was it probably would have been another month before he had sent me to the breast clinic querying cancer and by then I wouldn’t be sitting across from him smiling now.
WOW!!! I’m still grateful that he sent me when he did but slightly in shock how close I came to not being diagnosed in time. 
My family don’t understand the level of this shock – all saying “well just be really glad he sent you” ,  but having read the stories of some people on my IBC support network, I know how much quick diagnosis can change the outcome.   I would have been STAGE IV (metastatic cancer) if he had waited.
I’m grateful that he was honest with me but still OMG WOW!!!!  Just as well the breast clinic knew!!!!

Echoes of the heart

I had my echocardiogram done yesterday at Middlemore.  They said it looked good which hopefully means the Herceptin hasn’t had too much of an effect on it yet -hopefully I will get through the rest of the year the same way.

My surgery is probably the 21st April – it will be confirmed at my 2nd of April appointment with my breast surgeon (Dr BS).  Just as well I had this long recovery time between radiation and surgery as they wouldn’t touch me until this damn infection has completely healed.

I am a bit frustrated as OH and I had wanted to get away but between infection and losing my partial plate and having to get it replaced, it doesn’t look like it is going to happen until right after surgery. 

Other than that I feel fine – with losing all the “water retention weight” from chemo and then some, I actually feel really fit and healthy apart from the occasional niggle from Gertrude when I do a little too much or wear a bra too long.

I must admit I am a bit nervous about what happens with surgery.  If they autopsy the breast and find any live cancer in it or my nodes I may have to have more chemo., Hopefully after all the treatment I had it’s dead.  Dr H told me at my first consultation with him that they could give me a better prognosis after surgery and that if the chemo and radiation had got it I have an 80% chance of survival  and if it didn’t about the same percentage the other way – so now we just have to wait and see……I admit, IT’S SCARY!!!

I am just sitting at home waiting for the district nurse to come and have a look and change my dressing on my infection/incision site.  I finish my antibiotics today and am nervous of another flair up.  The site is looking good and continuing to heal well (the are using a silver anti-microbial dressing) so hopefully it gets completely healed with no further incidents.

The other things that are happening this week are the dentist and YD’s IEP on Thursday and I also need to go and see my GP (Dr BC)to get him to have a look at my big toe nail on my right foot  -I have had “die back” on all my nails from the chemo and some of them are quite loose – I need him to remove the toenail after I tried to do the job by knocking it on lounge furniture.

I haven’t seen Dr BC since he sent me to the breast clinic at the end of July last year.  I want to give him a big hug for being so “on the ball” and not treating me for longer thinking it was an infection – if he hadn’t been so fast in referring me to the breast clinic I would be in worse trouble now.  With the aggressiveness of IBC a month can make all the difference and I know from hearing some of the stories form the IBC support network how lucky I was to be diagnosed as fast as I was.  Lets hope that it was enough to give me a good outcome.

the week that was

Well the weeks gone well. YD’s IEP was put off til this coming Thursday.
I almost missed my herceptin chemo appointment on Friday I had written the right time on the calendar and in my diary but hadn’t looked closely at them for about a week. Usually my chemo has been at 11am. So I merrily thought to myself that it was the same this time – not so – it was at 10am m so at 9.10 there was a mad scramble to get me out the door and in the car. Thank God I had a smooth run through on the motorway. I got there right on time Pheeewwww!!!!!
The hospital rung yesterday and I have my echocardiogram happening this coming Monday at Middlemore. Hopefully my heart will be fine with no side effects from the herceptin showing yet.
When I went to the dentist she pulled one tooth out and filled another but wants me to have another 2 pulled out before I get my new plate. She’s going to do them on Thursday , she was going to do it on Monday but I had to reschedule after the hospital rung. I am taking YD away for the weekend the first weekend of April as a birthday treat, I may have to go without my new partial plate being ready but I’ve promised her we will go so I am just going to have to keep my mouth closed more when I’m talking to people.

So far, so good

Had a very positive day at the oncology appointment.  I got to see Dr H my leading oncology doctor (half the time I see his underlings).  He was very impressed with my weight loss and also said it was definitley ok for me to get my teeth fixed now.  He is pleased with the way my infection site is healing but does want to see me again before my surgery.  Usually at this point in herceptin chemo they dont see you for 3 months and just “ok” you for the herceptin treatments in between, but he wants to see me again before the surgery. It’s because of my history of infections and also because he wants for me to get a echocardiogram done.  It’s just to check the herceptin hasn’t had to much effect on my heart – that’s it only major side effect.

He thinks the radiation has definitely had some effect.  They can’t tell me much more until the surgery is done because only then will they know for sure how effective chemo and radiation have been. 

OH came with me to the Oncology assessment and afterwards we went to Manukau and I picked up my pandora bead for my bracelet to celebrate finishing radiation.  The radiation burns are healed and I can actually wear a bra again.  Still need to wear the larger bra I bought after Gertrude appeared as Gertrude is still slightly larger than my other breast.  I can only wear the bra when I need to (i.e. going out of the house) as Gertrude still gets a bit aggravated from the close confines (gets a bit redder and puffier as a result of the lymph vessels getting blocked)

I now have five beads on my bracelet.

from left to right in picture below:

radiation bead, hosptilisation due to infection bead, diagnosis bead (breast cancer ribbon bead), I heart(love) U bead from YD at Christmas, and taxotere chemo bead

 

my grown up version of cancer beads

my grown up version of cancer beads

The only other beads I hope to add this year are surgery bead (April), herceptin chemo bead (August), and most importantly an N.E.D bead (no evidence of disease – what they call remission now). If everything goes according to plan I will then just add a bead every anniversary of N.E.D status being achieved

So relaxing – not

So much for trying to relax – life just keeps on going. One of my remaining teeth broke in the weekend – so that’s another one that needs to be pulled out before I get my replacement plate fitted – hopefully they can all get done at once on Thursday. On top of that our 25 year old fridge broke down so we went fridge shopping and the new one got delivered today as it was the only day I was home all day. So a lot of rearranging to do, mind you, at least I get a new fridge out of it. I hope that the oncologist tomorrow says that its fine for me to have my teeth out while my infection isn’t completely better. I think because I am still on antibiotics, it should be ok.

home again, home again jiggety jig

Well folks they have finally got it  this time,  the bug that has been causing all the hospital admissions.  They hadn’t managed to culture anything from my swabs and blood tests on my previous admissions.  The hilarious thing is that the bug they found was enterobactor – I hadn’t heard of it and so I googled it and it said “Enterobacter bacteria are nosocomial opportunistic pathogens ”

of course nosocomial was a new word so I looked up that

“Nosocomial infections are infections which are a result of treatment in a hospital or a healthcare service unit, but secondary to the patient’s original condition. Infections are considered nosocomial if they first appear 48 hours or more after hospital admission or within 30 days after discharge.”

So I caught the infection from either the hospital possibly while I was having chemo or when the  were treating me for the original infection in December or from the district  nurses who have been doing my dressings.  Arrrrrrgh!!!!!!

On the upside they now know exactly what bug it is and what antibiotic is the most effective against it.  Luckily I have got a few more weeks before surgery to make sure it is completely healed.

I came home on Tuesday afternoon and apologise for not updating the G.O.G blog til today,  but have been catching up on my sleep.  6am wakeups in the hospital are not condusive to feeling wide awake all day.  On both Wednesday and Thursday mornings I slept until 11am and today was relatively early by comparison (9.40am).

On Wednesday I had S visit in the afternoon and bring her yummy baking as usual, then we had the usual Wednesday afternoon outing with YD. OH finished work early and came with us as we had hoped to pick up our new second car then, it wasn’t quite ready so we are picking it up this afternoon.

Yesterday J came for a visit and she must have read my mind as I had decided last week when I was out with OH on our wedding anniversary to buy some 1000 piece jigsaw puzzles to keep my mind active while I’m still off work.  I had done one and have started a new one and J has now bought me a third so that will keep me occupied for the next couple of weeks.

first completed jigsaw - "olde world map"

first completed jigsaw - "olde world map"

Talking about last Tuesday (wedding anniversary)  OH and I had a nice day we went out to Maraetai for lunch in a cafe by the beach and then continued round that road and went to Botany (shopping centre)  where I got my jigsaws and we looked in a few other shops and stopped for a coffee.  I know that I am missing a few teeth and my regrowing hair has a few grey patches but…. The girl asked me if I had a “super gold” card!!!!!  For you non NZers the supergold card is a card that gives discounts and free things to over 65 yr olds!!  I was totally shocked and flabbergasted that she thought I was 65!!!

This morning I went downtown with MD acting as my taxi as she doesnt have any uni classes this semester on Fridays.  I had a few errands to run and whiile I was down there I booked into the dentist to get my teeth fixed before I go get myself measured up for my new top partial plate. 

I am trying to keep myself at home and out of mischief as much as possible just so I am not overdoing things as my blood counts although approaching normal are a bit on the low side and I want to be as fit and healthy as I can be, going into my surgery in April.  Having said that I look at my schedule for next week and I have got something happening every day but Monday.  I have an Oncologist assessment on  Tuesday up at the hospital, usual Wednesday afternoon outing with YD, the dentist in the morning and YD’s IEP (Individual Education Plan) meeting in the afternoon on Thursday and my herceptin chemo at the hospital on Friday.  So I am quite busy without even trying.

And we know what they say about the best laid plans…

OD here… we know it’s never a good blog post when it starts with me. The infection has returned and Mum is back in Auckland Hospital for at least the next couple of days while they work out what to do next. For those of you keen to visit, she is now in Ward 41 (on the fourth floor, Vascular Surgery) – it’s not a cancer problem so it doesn’t make a whole lot of sense for her to be in the cancer ward. No jokes from me this blog post – situation is beyond a joke. All we can do is pray and hope that finally the doctors get it right.

Infamy – who me?

Well, I have had my 15 minutes of fame.  It was interesting last week especially on Friday when I went to my herceptin chemo and every one found out about the magazine article.  OD’s friend M got her workplace to scan and blow it up to a poster and put it on board and she presented it to me as a present, which I was very touched by.  It will go up on the wall in my “office”.  Here are scans of the article I hope you are able to read them, you should be able to open in another window.  This article of course does use our real names so our anonomity is blown a bit but I will keep using the abbreviations in the main blog.

first page

first page

second page

second page

I find at the moment I am good for about 1/2 a day before getting tired.  Although Saturday and yesterday I just felt tired all day.  Both days I slept til midday – yesterday I went back and had a nap again at 4pm,  and still slept a solid 9 hrs last night.  I think it is partly the painkilling drugs I am on and partly my body just recuperating from all  the effort it is putting in healing the radiation burns and fighting the infection.  OH of course cant understand how I can be so tired without doing anything – he thinks I need more exercise or something – yeah right!?!  The radiation burns at the moment are making quite a rapid recovery, from red and raw this time last week to parts of them being all lovely new pink skin.  The infection/ incision site is looking less inflamed and has healed about half its depth so that is promising as well.

It’s our 25th wedding anniversary today and I was quite depressed going to bed last night.  This time last year I had thought that our wedding anniversary was going to be celebrated in style with OH and I going away to the place we had spent our honeymoon.  But especially with this infection and also not knowing how I was going to be after the radiation we didn’t make any big plans.  We will probably go out later for lunch or dinner.  I can’t help feeling a little guilty that this current state of affairs is what was meant by the “in sickness and in health” part of our vows.  Neither of us thought that we would be dealing with major sickness.  I especially, at 21, didnt expect at 46 to be dealing with this .

Part of the other reason I am a bit down is the fact that in the IBC network that I belong to on the internet, five people have died in the past three weeks.  It brings home the reality of this particular cancer that for every one of  us that becomes a survivor there is an equal number or more that don’t make it.   I am still planning on being a survivor but things like this do set up a bit of a niggle at the back of my thoughts “WHAT IF?”

OH has got the next week off so we will just enjoy spending some time together although there are a few chores we need to do.  We need to buy OH a new car for work as some idiot broke into the older car he had and totally wrecked the ignition stole the whole barrel assembly and pulled the dashboard apart while he was doing it. The car isn’t worth that much and the insurance have written it off .  Although he catches the subsidised bus to work usually, with me being in and out of hospital and needing him to work shorter or longer days – he has to take the car more often.  With me not being able to drive because of the radiation to my collarbone , he has been able to use our good car but once my burns have healed I will be driving again and hence the need to sort out a new car for him.  For those of you who are wondering why he doesn’t get to drive the good car to work and leave me with the older car – its because he works at a Steel Mill and the iron dust in the air isn’t that kind to the paintwork long – term (lucky for me Heeheheehehee)