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    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
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  • SUSAN’S ARMY

    No Princess Alone button

All hooked up

Well chemo started on Friday – it was a very long day. My appointment was for 10am but I didnt get called til closer to 11.30am.  then I was hooked up until about 4.30pm. 

I have had some side effects but nothing too drastic. Mainly a little bit of reflux that has been kept under control with the anti-nausea meds, and a bit of cramps on Friday night, Saturday morning.  I got a very flushed face and a bit of a rash on Saturday about lunch time but temp was normal – rung the hospital just to check and they told me to use cool flannels etc to get the hotness/flush down from my face.  It was funny because I was actually home alone at the time. Because the girls had thought I was fine they went off to do their jobs they had to do while Gary popped out to get some things at the shops.  He came home to me having hot flushes LOL.
The chemo also seems to aggravating Gertrude , which is a good thing because it means it is targeting the right place.
I have been getting heaps of love and support from everyone , friends and family.  flowers, cards, gifts and good luck charms, heaps of messages and phonecalls and even Reiki sent from my sis H in Oz (Reiki is focussed positive healing energy/thoughts – usually done in person but can be done over distance if person practising Reiki can visualise you)
I have a little unicorn that I am attaching all my little gifts to so it can accompany me to my treatments etc.  In the picture you can see that it has my guardian angel from friend J in its ear, a pretty bracelet that my “adopted daughter” M made me around its neck as a choker and the “Daffodil Day ” daffodil as a corsage.
We are trying to think of a name for the unicorn (any suggestions can be posted in comments)
Remembering to take all my pills is hard work (more details of that on chemical warfare page) -just trying to remember which to take when is quite hard work for the days around chemo. I am on more pills just before and after chemo. I forgot to take my sleeping tablets last night and paid for it at 4am this morning, luckily I was able to have a little nap later in the morning.
Geez, anybody would think I was sick LOL
Geez, anybody would think I was sick LOL
my good luck unicorn

my good luck unicorn

Oh My God!!! this is really happening to me!!!

It sort of hit me today with going to see the oncologists and the Cancer Society today that this is really happening to me.  I guess I have been so busy ‘organising’ and other things that most of the time it has seemed quite surreal to me.  But with chemo starting on Friday along with the inevitable side effects,  it has really got to me today that this is the end of my life as I knew it.  now there will be life before  Gertrude (BG) and life from today onwards.   What ever happens from here on will be always affected by Gertrude. 

The oncology visit: OH went with me – didn’t learn much more about my treatment other than I need to take steroid tablets the day before, and for a few days after chemo. this is to combat the possibility of allergic reaction to Taxotere,  They measured me and weighed me – to ascertain the dosage of chemotherapy that I will be getting.  they also gave me some anti-nausea medication.  Once I have had my first couple of rounds of chemo  they are hoping to see a reduction in the amount of inflammation I have,  but because of the nature of Gertrude things will be constantly reassessed as treatment goes on.  The steroids have to be taken 12 and 6 hours before chemo so I have to be awake at approx 4am Friday morning to take the second one.  After treatment it is 12 hourly. 

After seeing the oncologist we decided we would pop over to the Cancer Society building and see what resources were available to me  – talked to a lovely nurse there who told me about the things I was entitled to.  The Cancer Society has Liaison nurses who sort out what you need at home in the way of support and also help you to sort out your treatment regime if things arent going quite right in between treatments – I registered for that service.  She will probably be in touch next week to see if I need any support or anything. I also got some books out of the library there to help explain things to YD and a couple of books for me to read as well.  I will probably do a “look good feel better” work shop through them a bit further along in my treatment.  This will help with makeup and wig/scarf tips etc.

Got a lovely text from my youngest sister F today while I was just leaving the hospital today.  Although she lives several hours drive away, she is going to try and come up for my “shave party” and if she cant make it is going to get people to sponsor her to get her hair shaved down where she lives in solidarity with me.  I think its a lovely thought.  I don’t expect people to shave their heads in sympathy with me and have told OH he definitely can’t because I think it wouldn’t suit him but if YSF wants to I am not going to stop her. 

This afternoon I am having my usual afternoon tea with YD then take her to Vibratrain. She knows I am starting my medicine and won’t see her as usual this weekend because the medicine is going to make me not feel very good.  We are still tossing up whether or not to tell her I have cancer or just continue with the whole “sore boob need lots of medicine” story.  I think we will probably tell her when I have lost my hair just in case someone sees me and says something in front of her.

Might write more tomorrow.

No longer in limbo

Today’s the day I do my echocardiogram at Middlemore.  Feel like I am no longer in limbo -which is the way I have felt most of this week – just waiting for things to start.  

Have started to get “get well” cards which feels weird as I dont feel that sick.  I also got a bunch of flowers from the girls at CF – Thank you  -made me feel special.  My friends are being great although there are still some I am yet to tell. The sort of friends that even though we are close I only see or talk to every few months. It’s hard to ring them up or email them or see them just to tell them this news.  It’s been easier to tell the friends and aquaintances I see all the time. 

I have been taking things easy this week and it has been good for me.  I have had a touch of the chest cold that OH has had but with antibiotics it is under control thank god, its something I am going to have to be really careful of once chemo starts.

Have got my new car which is wonderful and a new laptop  with wireless router so I can sit anywhere in the house and play my computer games or update my blog etc and  a TV for the bedroom.  OH is still setting up laptop and TV but they should be both up and running by the time I start chemo next week.

Yesterday while I was waiting for them to cut an extra key and code another remote for the car I took the opportunity to look round Manukau for some hats. I bought three different ones and I had already bought one in the Farmers sale.

the start of my hat collection

the start of my hat collection

 I feel I have done as much as I can to organise things for what is to come.

Waiting

Have just started to get appointments.  Three came in the mail yesterday.  I have the ECG on this Friday.  My oncology team appointment next Wednesday and chemo starts next Friday.  Still haven’t heard when my little porta cath operation is – have rung up the hospital and it hasn’t been scheduled yet but will hopefully be done next Monday – we will have to wait and see.  Feel a bit guilty about not working this week but am enjoying not having to wear a bra and put pressure on Gertrude-affected boob.  Things blew up at home last night -we are all under so much stress it had to blow some time.

The oncologist visit onwards

When we went to see the oncologist he basically confirmed what we already thought would be the likely route of treatment and confirmed that the cancer had spread to the lymph nodes in my collarbone and advised I was HER2-positive as well which means that I can take the new drug herceptin and that the cancer is not hormone based , that is isnt fuelled by the female hormones oestrogen or progesterone

He can’t give me a definitive prognosis because of the aggressive nature of this disease.

Due to the “nature of the beast” Gertrude having started in the lymph nodes of my breast, has spread very fast to the lymph nodes in my armpit and in the last week to the lymph nodes in my neck.

I probably haven’t had “Gertrude” more than a couple of months.  Because it is already in my lymph system I have already got cancer cells circling around my body.  At the moment it appears that they haven’t found a home anywhere else.

Because it is already in circulation, I need 6 cycles of chemo 3 weeks apart to start with.  I will start losing my hair 2 weeeks after the first dose of chemo so I have already booked or semibooked a haircutting/shaving party at the hairdressers mid-September.  – exact date to be determined when I know exactly when my chemo starts.  MDs boyfriend has offered to get his head shaved at the same time as me so we’re going to have a bit of a drinks and shave party.

I have already picked out a wig because I didn’t know it, but the nearest stockist that  stocks the hair dye that I use, also are the wig and headcover stockist /advisors.  I went there today to pick up some hair dye yesterday because I decided to dye my hair one last time before I lose it so it looks its best for the next few weeks.

At the moment I am in a lot of pain from the inflammation but the oncologist has prescribed 100mg Voltaren for the pain and Amitriptyline sedatives so I think that side of things is going to be much more under control.

My work has been very understanding – they will have to employ some one else to cover most of my shifts, but they have said I can work when I feel like it while my treatment is ongoing, although I did offer to resign if it was too difficult for them.

After all the chemo cycles things will be reassessed and then surgery and radiotherapy will follow. The order of which will be determined by how much they think they have got ‘Gertrude’ under control.

It is only then once they have done the mastectomy and autopsied my breast and lymph nodes that they will be able to give me a prognosis.  If there are any cancer cells still living then they will repeat chemotherapy but the chances of me developing more secondary cancers is very high.  If the cancer cells are all dead then I have a very good chance of being a five-year survivor.

The Chemo is likely to start within two weeks but before they start I have to have an ECG (seeing herceptin can affect your heart) and I also need a porta cath put in under general anaesthetic (this is a permanent tube they will put the chemo through.  it will go into the vein in my neck with a reservoir and connection port in my chest ) as well as consultations with oncology and liason nurses and the oncology dr before the treatment starts.  I am on leave from work as from this Saturday just for the next few weeks just while we get the chemo routine set up and know how I react to the chemo.  I am hopeful to return to work for a few hours a week when my chemo cycle allows.  My treatments will be daystay at Auckland Hospital.

The good news is that all my chemo (taxotere and herceptin) can be done in the public sector and because I  have got it in my neck (classed as secondary cancer) I qualify for having the herceptin carry on in the public health sector after the initial chemo and the oncologist says due to the nature of ‘Gertrude’  at the moment he thinks I will be on herceptin indefinitely.

This is great news and has taken some of the weight off me and OH as we worried we would end up massively in debt if we had to fund treatment (our medical insurance would only cover so much stuff done in the private sector) OH and I have restructured our finances a bit so we dont need to worry about money while all this is going on.

We are trying to figure out when and what to to tell YD, more comments  on this on a seperate page

The older girls and we are coping as well as can be expected and as you can tell I am trying to organise as much as possible before the chemo etc takes over.

MD calls Gertrude “Mad Boob Disease” and OD calls it “the Space Amoeba” (which probably means nothing to you if you havent read Piers Anthony, Cluster series Vol 3 Kirlian Quest – he’s one of my favourite authors)  but suffice to say both of these are fairly accurate descriptions of Gertrude.

Will keep you updated as news and views come to hand

To get you up to speed

This is the info up to our oncologist visit this week.

Pre diagnosis

Approx 4-5 weeks ago

Right breast was intensely itchy for two days dismissed as possible reaction to washing powder residue or something.

Intermittent pain in lymph nodes right underarm accompanied by sinus problems so dismissed as ‘fluey’ symptoms

18th-20th july dull breast pain dismissed as period pain.

21st (Monday)pain intensified -by end of day Breast was enlargedsore with redness, extreme puffiness of the skin and especially round the nipple which was inverted – pain in underarm

22nd (Tuesday) redness and pain had subsided somewhat in the morning so arranged to see GP after work on Wednesday.

23rd (Wednesday) saw GP after work  very enlarged, painful and inflamed – put on antibiotics

Breast subsided a small amount and had/has  a cycle of being less enlarged, inflamed and painful in the morning so when I saw GP on Friday and  Monday  mornings it looked like it was responding slowly to antibiotics though they were concerned that I was showing no sign of general fever or unwellness.

30th (Wednesday) worked all day before going to thedrs and breast was larger inflamed and extremely painful- had also had extreme stabbing pain in my underarm the day before.

GP gave urgent referral to Breast clinic with instructions I had to go within 2 days

31st July (Thursday) Saw breast physician at breast clinic  – had ultra sound, mammogram, fine needle biopsy and core needle biopsy.  Given stronger antibiotic in case it’s an abcess.

Monday 4th August – diagnosis of Inflammatory Breast Cancer. Referred to oncologist

the first thing we did when wegot home is look it up on the web.  the websites are provided as links at the side of the page.

after reading these we realised it was pretty serious.

Thursday 7th CT scan and bone scan in preparation for going to the oncologist

While we we were waiting for my oncology appt coming round this week, I noticed that the glands in my neck were getting sore as well

All about Gertrude

Gertrude is the name we have decided to call my cancer hence the title of this blog.  This main page will be where I write about the general goings on that relate to Gertrude.

there will be other pages that are more a diary of treatments etc

and another one that will be my random ramblings when I cant sleep at 3 o’clock in the morning or what ever
Thanks to my brother for giving me this idea because it is the way of letting all the family and friends know what is happening. without it takin over my facebook page or youngest daughters and mine bebo page

Thanks to my friend S for giving me the idea of giving it a silly name

and thanks to oldest daughter (OD) who pointed me in the right direction and helped me start this blog