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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 going according to plan …

I had my appointment with the medical oncology team to assess me for my next herceptin which is due on Friday. They are quite pleased with how things are progressing with how Gertrude is responding to the radiation and although it was hard for them to see just how much improvement there was due to the dressings for the burns and redness that radiation has caused they could tell Gertrude had deflated some what and I could tell them I noticed that my nipple had popped back out – it had been inverted since Gertrude had first developed. I also found out I have lost another kilogram so I am now 10kgs lighter than I was after chemo, 4kgs lighter than when I first got diagnosed – probably all due to water retention being resolved as my lymphatic system starts to work better again. I’ll be half way to my goal weight by the time they have taken Gertrude off.
Its great to be back home again although my activity is severely curtailed by the radiation burns. Looking forward to a couple of weeks time when these are more resolved and I will be out and active more. Just had S for a visit. That’s the other thing about being at home I can see my friends more without them having to trek to the hospital. I saw my BRO and R his other half at the airport on Monday which I really liked. They were on their way home to Christchurch. I really enjoyed seeing them – thanks to MD who has been my chaffeur this week before starting back at university next week. OH took yesterday off for my hospital appointment and is hoping to take next week off as well, so I won’t be stuck at home too much thank goodness. Hopefully after that I’ll be able to start driving myself places. YD is visiting me at home this afternoon as I am not up to going out for our usual Wednesday afternoon tea and vibratrain, again MD is being the taxi for that.
I’ve been very pleased and flattered by response to the story in the NZ Woman’s Weekly.  I hope it will help other woman be aware and get diagnosed quickly if they have IBC.

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Back at home

Well, they sent me home from hospital early – I was due to be discharged yesterday or today but they were a bit short on hospital beds so let me come home early. (Friday night)  Poor OH has had to dress all my radiation areas and my incision/infection site.  Our dining room table is covered with piles of the different dressings – OH does like to be organised LOL 😀

dressings, dressings and more dressings!

dressings, dressings and more dressings!

I am struggling a little with the pain but have good painkillers but can’t move around too much as the dressings on the radiation (Gertrude) side can’t be taped in place so are prone to moving around if I move around to much. 

I am now under the district nurses who will see me every day or every second day for dressing changes and supplies for OH to do them at home. At the moment the radiation site need to be dressed twice a day.  They should heal gradually over the next couple of weeks now I have finished radiation.  The radiation can keep having an effect for a week or so after actual radiation finishes so it may get a little worse before it gets better.

This coming week (Tuesday) I have my assessment with the medical oncologists to set me up for my next Hepceptin chemo which is due this coming Friday.

I have definitely lost my teeth (top partial plate) but I am not going to worry about getting a new one until I can get out a bit more.  This week I am just going to limit myself to doing the necessary things. 

Toothy(toothless) grin and dressing

Toothy(toothless) grin and dressing

My story appears in the NZ Woman’s Weekly this week – I am so glad that I had the “photo shoot” for it before I lost my teeth.

Well – Have they fixed it this time?

On  Monday night, the vascular surgeons opened the incision line from the portacath removal site.  Painful as hell under local anaesthetic and they nicked a subcutaneous vein so it ended up being a bit messier than they intended.  Today is the first day that I have felt up to coming downstairs and hopping on the computer in the book shop. They have left the incision line open and I have been on IV antibiotics until today – they are swapping me to 3 week course of augmentin while leaving the incision open and hoping they can get it to heal cleanly from the bottom up.   They  are going to observe for a couple of days on the oral antibiotics but I will hopefully go home Saturday or Sunday with district nurses visiting every day to keep an eye on it.

In good news I finished my radiation yesterday and while some of the skin is a bit raw on that side its is great to know that at least that part of the process has been ticked of the list – now I just need to concentrate on everything healing and recovering in time for my surgery in April.

I got MD to come up today to escort me downstairs just in case I started feeling dizzy or anything.  She has also brought in my laptop so I can play games and watch dvds (unfortunately there are no free wifi access points close enough for me to log in on that because then I could do everything from my hospital bed.

In the “sad but amusing after the fact” news – I was feeling a bit nauseous on Tuesday and vomited in the loo in my ward room – I didnt realise til later that evening when I felt a bit more “with it” I no longer had my top partial denture in (Woops I wonder where it went LOL)

Anyway I will  hopefully be updating this from home in a couple of days

AGAIN…

OD here… the message we didn’t expect to be ever writing again, now that chemo is over. Mum clearly missed her doctors and nurses at the hospital far too much and decided to have a resurgence of the infection in her portacath cavity so she can go and visit – and have a holiday from us brats at home, obv.
On a serious note though, she is doing fine (feeling the effects of the radiation more than anything to do with the infection) and the doctors are consulting with several different people to see what they can do to ensure that this is the absolute last time she has to be admitted for this particular issue. At this stage we’re not particularly worried as to how they get rid of this infection completely, just that they do. It’s starting to get beyond a joke… which if you know our family, you’ll know it takes quite a lot before we can stop finding the humour in something.
If you’re in the area, you’re welcome to visit – same hospital, same ward, just Room 12 this time. We expect she’ll be in until at least Monday but as usual, we’ll keep you posted.

long time, no blog

Apologies to those of you who have been waiting for the next post on my blog.  Feeling great physically last week, I made the most of it and got busy.  We had OD’s friends M&M wedding last weekend and so I spent most of last week sorting out an outfit.  Including creating a hat to go with my brown and green outfit – hat, ribbon and feathers all from Spotlight (artistic design my own)

Wedding hat

Wedding hat

 I also realised we hadn’t organised a wedding present so that took up most of one day after radiation.  Although I was on the go a lot I also found the heat and activity made me pretty worn out by the late afternoon and a couple of afternoons I even had a nap before tea.

I am glad I did that last week . I really needed to be able to have a “normal” week after the more enforced inactivity of being in hospital. 

 I have been told today by the radiation therapy nurses that it would be better if I didnt drive my car for the remaining radiation treatment weeks.  The reason for this is the seatbelt is rubbing against where they are targetting my supraclavicular lymph nodes (the ones by my collarbone) and the skin is getting a little aggravated.  I also have a bit of skin breakdown in the fold under my breast – I am not allowed to wear my bras any more and have to wear these makeshift croptops with dressings inside covered in aqueous cream.  Although I did break the “no bra” rule for the wedding.   Both my collarbone and breast are more painful but I actually feel way more normal than I did duringchemo.  When I was asked by people at the wedding how I was; I think they were a little surprised when I answered “Really good!” with a big smile on my face but I explained that I am feeling so much more like myself now that the chemo effects are wearing off.  The pain can largely be controlled by painkillers and as long as my head is not involved and I can think straight I can deal with things much better.

I will take the train up to the hospital (train to Newmarket and bus to hospital) I could get my girls or OH to take me and Sis M has also offered but I want to retain some sense of independence.  OH is already coming with me on Friday as it is time for an oncologist review as well as the actual radiation.  I do prefer him to come to those sort of appointments so that we can compare notes afterwards and make sure we both heard the same thing.

The other thing that happened last week was the New Zealand Woman’s Weekly rung about the story that I had written for their competition last year.  It is going to be published in a couple of weeks and they wanted firstly to get an update on what’s been happening since I wrote the story in November.  They  also wanted to organise some pictures to go with the article.  I am sending in a couple from home: of the family, and me before I lost my hair, but they also wanted me to meet up with their photographer for the main article photo, so today I had a “photo shoot” in the Domain after my radiation.  Hopefully they will be able to get one good shot out of the myriad ones he took.  Haven’t smiled/posed so much since our wedding day – just wish I still looked that good 🙂

Will confirm the publication date and post in one of the next blog entries

I think I have got you up-to-date with most of the important developments over the last week.  I will be blogging more regualrly from now on.