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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

I’m back

Well OH and I arrived home from our holiday last night – after beautiful weather in the high 20s (celsius) came back to cold windy thunder and lightning. Almost made us want to get on the plane and head straight back there. If it hadnt been for the fact that MD was leaving at the end of the week we may have stayed there longer. I am going to be quite busy for the next few days with appointments and helping MD pack so the big blow by blow travelogue blog will have to be done next week when I’ve had time to sort out photos etc. Surfice to say we had a wonderful time and I handled both the heat and level of activity very well. As a teaser I’ll show you the view that greeted us from our hotel balcony when we checked in.

lagoon pool at Peppers from our balcony

lagoon pool at Peppers from our balcony

bon voyage

Well its only a day before OH and I go on our trip.  Both of us are so looking forward to it.

This week has been a bit busier than I had hoped.  On Tuesday morning I had a bit of beauty treatment done legs waxed etc to make me more warm weather presentable as it were.  On Tuesday afternoon I went to see the lymphodema therapist who used kinesio tape on me (will put pic on next blog post) Its basically an elasticated adhesive tape which they put in strips up your arm (in mycase) and across my chest which help move the lymph fluid along by acting a a massage as I bend and flex my arm going through my daily business.  This will stay on until it starts to peel off on Saturday.

Today, Thursday, I had a appointment with the vascular surgeon about my portacath site and whether or not it had healed properly.  The good news is that he doesnt think it needs any further treatment at the moment.  The not so good news is that he is still worried about the raised tunnel left under my skin from the catheter going from the portacath to the vein in my neck.  He wants to see me in 3-6 months to see if it has resolved itself.  The other depressing thing he talked about is what they would need to look at doing if I need more high strength chemo if the cancer comes back.  I can only have bloodtests IVs etc in my left arm now as the risk of lymphodema if I have any injury or wound to my right arm.  It reminded me of the possibility that the cancer might come back.  I felt quite depressed after this appointment and it wasnt til I was talking to OH tonight and he said it was because I was looking for closure at this appointment. I had hoped to go and him say it was all good and he didnt need to see me again.  Not only did he not do that but he reminded me that my battle might be over but there was no guarantee that there would not be a resurgence.

I promised some before and after photos so her they are the first one is of me with hair circa August 2006

me with hair 2006

me with hair 2006

These are two taken when I had lost my hair, the second one in December shows the extent to which I lost my hair but also how I got a bit bloated from water retention even in the face from the steroids I had to use in conjunction with chemo

one of my favourite winter hats

one of my favourite winter hats

looking my worst? December 2008

looking my worst? December 2008

The final one is how I look now – short hair, reading glasses and definitely a much better colour to my complexion

looking good LOL

looking good LOL

Hopefully I will be able to twitter updates while away on holiday – keep an eye on the box on the right – otherwise the next update will be in about a week and a half.

Presenting Pruscilla

I got my proper silicon prosthesis on Tuesday.  I also got a fabric one for swimming.  I got 5 bras and a swimsuit.  We get a $600 allowance from the Ministry of Health but when the prosthesis itelf costs $377 it means if you want more than one bra you are going to pay out yourself. We get a new entitlement every 4 years. Pruscilla should last that long if I take good care of her.  I have to wash her every night to get any build up of body oil off her as that can start to degrade the surface.  I then have to dry her and put her in a plastic form that helps to retain her proper shape

Pruscilla

Pruscilla

 

Pruscilla in the bra - sits better when its on me

Pruscilla in the bra - sits better when its on me

 

Pruscilla's bed

Pruscilla's bed

 

the backside of Pruscilla in her box

the backside of Pruscilla in her box

I feel great with Pruscilla on.  She’s the right weight and when I look down I feel like I’m looking at two real breasts.  Nobody can tell which is the false one.  I bought my first new top for my smaller size on my way to the hospital for my herceptin on Friday – it was a medium!!!!  I felt so good!!!!

My pink pilates exercise programme is going really well and my fitness is getting so good I walked to the physio on Thursday and then felt so good I walked from there into town to catch the train to go to see my breast surgeon. I was scheduled just to see the breast surgeon’s nurse but BS was in between patients so popped into the room.  She is extremely pleased with the way both my Gertrude side has healed and how the reduction looks.  She hadnt been certain how well my  Gertrude scar would heal because you can never tell how radiated skin is going knit together,   but it looks really good. 

 I know some of you are interested in what the scar looks like and I will put some photos on the blog once I have taken them but the post will be password protected so it isnt public to everyone on the web.  When I have done the post I will let you know what the password is.   I am still feeling really ok about being flat chested on that side when I dont have a bra on and when I look in the mirror. 

Its now only a week to OH and my trip – I’m excited its the first overseas trip for me in 14 years. 

 This coming week I am using the voucher that OD gave me for a facial and combining it with getting my legs waxed etc so I am presentable in sunny Queensland.  I also have an appointment with the lymphodema therapist on Tuesday afternoon.  She will see if I have to take any extra precautions to guard against my arm swelling while I’m flying or otherwise while I am away. 

On Thursday I have an appointment with the head vascular surgeon who looked after me when I had the recurrent infections in my portacath site.  He had read the reports from my oncologist about the portacath site still not being 100% healed when they saw me just after my mastectomy operation and want to have a quick look at it myself.  BS had looked at opening it up and tidying it up when she did my surgery but had decided it was so close to being healed she would leave it.  I didnt know anything about this until I got a text reminder on my mobile phone on Wednesday.  the day they made the appointment – I got the letter the following day.   The text gave me a fright as it didnt say what the appointment was for -just that I had one.  and when I rang the confirmation line they said it was an urgent referral to vascular from oncology but couldnt tell me any more than that.  A couple of phone calls later I got put onto the scheduler for the vascular teams who went into my file and found out for me it was purely the vascular surgeon making the decision to review it, not an actual referral from oncology.   I had hoped not to have any Gertrude related appointments this  week and just be able to relax and get organised for my trip but I decided to go ahead with this appointment just for piece of mind.

Keeping up to date and Twitter

I have had a good last few days,  I didn’t wear my compression sleeve yesterday (and didn’t get an achy arm) even though I had a busy day – In the morning I went to a craft market with MD, then picked up YD and OH  and went out to meet my sis H and her partner M, who are over from Australia, for lunch.  We had a very leisurely lunch and catch up (3 hours long).

OD and her  man R also came.  This was the first time that R had met MD and YD and the longest he had spent with OH and I, as when OD first started going out with him 3 months ago, I said I didn’t want to meet him until I had my replacement teeth (after losing my top partial plate at the hospital).  The funny thing was, the first time he did meet me about 3 weeks ago, I had my new teeth in but not Cushla so I was lopsided but given that he already knew the circumstances I didn’t feel too self-conscious. 

Next week I am quite booked up with Gertrude-related appointments.  Tuesday morning I have an appointment with the oncologist to OK my last 4 herceptin treatments (that will take me to the middle of August).  Tuesday afternoon I have the fitting for my mastectomy bras and getting my silicon prosthesis.  I think I will still wear Cushla (my post- surgery soft cushion wadding one) around the house some days or like today just go one-boobed.

Thursday I have my Pink Pilates in the morning and an post-op follow-up appointment with the breast surgeon’s nurse in the afternoon.

Friday I have my herceptin. 

Which brings me to ‘Twitter’ – I am not logging on and updating the blog everyday but you will notice on the right-hand side there is a box titled Twitter – for those for you who don’t know this is an internet application that allows you to miniblog or message.  I can ‘tweet’ from my internet home page or from my phone and it will show up in this box.  So if I havent written an actual blog post for a while the last 8 twitter updates will be in that box. I am hoping I will be able to ‘Tweet’ messages from my phone while I am on holiday in Australia (only two weeks to go -Yahoooo!!!!) as my phone is on global roaming.

So if you are wanting to know what’s happening keep an eye on that ‘twitter box’ too, as well as on the main blog posts.  If you are a twitterer yourself feel free to follow me.

In my next blog post I will show you the before and after shots of my hair – had my first haircut last Tuesday – and also show you what my new prosthesis looks like

Firsts

Well this last week has been the first time in months I’ve really felt like anything approaching my old self.  The compression sleeve has worked really well.  I wore it during the day all day Wednesday, Thursday and Friday then didn’t wear it for a couple of days in the weekends – just relying on the lymphatic exercises and massage.  The real achiness that had been present hasnt returned. I have worn it this week when I have had busy days.

 On Tuesday I walked downtown  to get my hair cut and do a couple of other errands and then walked home again.  The time it took me to walk the approximately 2kms was only 5 mins longer than it used to take me when I was fitter so I was really pleased.  I was also pleased that, even with suffering a bad head cold this week, by the end of the expedition I was feeling neither breathless or overly tired which has been my experience up to now (If I went out and did stuff I would ultimately feel quite stuffed afterwards). 

My Pink Pilates physiotherapist  is also very pleased with my progress -at my appointments, last Thursday and today, she has added some more general fitness and strenthening  exercises.  I am so glad I am getting my old fitness levels back before we go on our Australia trip. Only two and a bit weeks to go now.  I am so looking forward to it especially when I see the temperatures over there at the moment.

I haven’t written a blog post for the last week because we have been busy getting organised for our trip and also for MD’s move the week later.  As she is not moving most of her large furniture we have decided to reorganise the house and get rid of some of our other excess stuff.  We have also decide to replace a couple of things like our casual crockery and our bedroom furniture both are more than 25 yrs old and we are going to have a garage sale to sell off as much of it as we can.  The annual inorganic rubbish collection is at the end of July so anything we don’t sell can go out in that.