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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

Instant Weight Loss!!

When I was having chemotherapy I put on about 5.5 – 6 kgs which was an expected side effect of chemotherapy, what they dont tell you is that it is water retention that causes most of that weight gain.  I started getting very puffy feet and ankles after my last taxotere chemo session in December.  I had noticed in the last couple of weeks that the puffiness had gone down and had hopped on our scales at home, they had said I had lost a few kgs but I wasnt sure how accurate they were compared to the hospital ones.  I had been weighed at the hospital on the 13th of January and was significantly more than our home scales were showing which is why I was doubting the home scales a bit. 

I got weighed on the hospital scales yesterday the 29th  January and got the shock of my life……..they weighed me at even less than our home scales…..

I HAVE LOST 9 KGS IN 16 DAYS!!!!!!

I now weigh 3kgs less than I did before I started chemotherapy.

In other news my infection is slowly getting better but while I have still got a couple of weeks of radiation, the nurses at the hospital will keep reviewing it when I am in there and hopefully it will gradually disappear.  They have said that the raised “tunnel” from where the catheter was may take a couple of months to calm down completely and we just need to make sure I don’t get another infection brewing in it.

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Breast cancer t-shirts

One of the things me and the girls did on Sunday and Monday is buy this years Glassons Breast Cancer t-shirts if you want to look at all the t-shirts or order them you can look at the Breast Cancer Research Trust or Glassons

My girls and I have had a tradition of buying one every year since the campaign started little knowing that we would actually be supporting a cause that I would have need of. 

My Trelise Cooper T-shirt

My Trelise Cooper T-shirt

OD's Stolen Girlfriends Club T-shirt (singlet style)

OD's Stolen Girlfriends Club T-shirt (singlet style)

MD's Ruby t-shirt

MD's Ruby t-shirt

YD's Louise Clarke t-shirt

YD's Louise Clarke t-shirt

 

We also bought our exchange students one so they can be supporting breast cancer research as well as having a NZ t-shirt

NZ tshirt by Jayshri Ganda

NZ tshirt by Jayshri Ganda

 

When I have had my surgery I will also order some tshirts from http://www.gotcancer.org/  – an organisation in the states

They have some fun t-shirts like “been there fried that” (radiation) and other slightly smartass slogans .  Definitely my sort of t-shirts

I’m not that sick really!?!

It’s been great being out of hospital this week, only trouble is trying to convince people that even though I have been in hospital for the best part of the month that I am not that sick really.  Its just the necessity of needing IV antibiotics because of the doses needed to budge the infection in the tunnel left by the portacath tube that insured my prolonged stay in hospital.  I was not feeling actually sick at all – just had pain at the site of the infection.  I am on antibiotic tablets (augmentin) til next Monday.  The Drs on the ward checked the site on Tuesday and are pleased with its progress but will check it again on Friday.  The PICC line is staying in until we are sure that the infection is not recurring after the antibiotic tablets are finished.    Radiation nurses are flushing the PICC line each day when I am there. 

Radiation is such a piece of cake,  compared to chemo.  I am still having after-effects from chemo, its part of the reason I am having so much trouble with this infection.  My hands and feet are still suffering side effects although the water retention in my feet has dissipated.  The soles of my feet is very cracked still and I still have residual numbness in my toes and in my index fingers and middle fingers of each hand, they’re are still not quite right. And my fingernails is still recovering I may lose some of them.

On the good news front my hair has started growing back.  I need to get it trimmed before a wedding we have got next week.  I have also lost most of my chemo induced weight gain.  So I am feeling great about that!!

Quick update

I’m free!!! Out of hospital but still with my PICC line in. On oral antibiotics for the next ten days but visiting hospital daily to get PICC flushed and for them to keep an eye on things so the infection doesnt flare up again . They have kept the PICC line in just in case I need to go back on IV antibiotics.
Am feeling quite tired still so I will leave the more indepth update until tomorrow when i am thinking more clearly and over the excitement of being home.

slowly but surely

Well, I haven’t been abe to access the net until today. I am still in hospital, they have inserted a PICC line which is a catheter into the vein in my arm for them to deliver the antibiotics through. They were running out of veins in my hands to put needles in.  I have been on a new IV antibiotic since Monday and it seems to be working slowly but surely, there is a bit of discussion about how long I should stay on the IV antibiotics – if it’s more than a week they may look at teaching me how to administer them myself so that I can do it at home with guidance and checkups from the district nurses. But at the moment it looks like I am in until after the weekend at least. They have done another ultrasound of the surrounding tissue and veins to check there is not an underlying issue they need to deal with but that was clear so if we can get on top of this infection then I will be ok. I am having a slight allergic reaction to the radiation like a heat rash but that should ease as my skin gets more used to it. Other than that my radiation therapy is going really well. Will update this again if anything new happens or when I get out of hospital.

On temporary release!

I got let out of the hospital today (Saturday) but only til tomorrow night.  The infection started flaring up again on Thursday night and by Friday afternoon  the tube tunnel was inflamed again and stood out quite a lot from my surrounding skin.  The infectious diseases people came to have another look and said they were going to change my antibiotic but it would mean I was in hospital for another two weeks on IV.  On further discussion between the doctors they decided they would try me on a high strength antibiotic in tablet form over the weekend and reassess on Monday.   As it was in tablet form (3 tablets every 8 hours) they said I could have weekend leave as long as I didn’t feel sick.  If I start feeling unwell I need to return to the hospital sooner but otherwise I don’t need to go back until Sunday evening. 

It feels quite weird ,  being home but knowing it is only temporary – I can’t relax fully.  If  they think these antibiotics are working they will discharge me on Monday afternoon with a continued course of the antibiotic tablets.  If they dont think they have been working  the next line of attack is another change of antibiotic and back on IV which means I am then back in hospital for two weeks .  Everyone including my doctors is crossing their fingers and hoping that these tablets work.

In other news my radiation treatments went well until Wednesday,  but on Thursday they felt they couldn’t line me up enough for the radiation beams to be within the tolerences they allow so  they cancelled my radiation treatment until I could get remapped on Friday.  My radiation will start again on Monday.  Hopefully the rest of my 5 weeks will go according to plan.  The actual radiation treatments are agitating Gertrude and she is getting more red and swollen but hopefully the agitation is showing the radiation is having the desired effect. 

On Friday I actually had a very busy day as I was the test subject, for registrars sitting their exams to become oncologists, in the morning which involved me having one on one interviews and examinations with both the candidates then them presenting their findings on me and what their treatment plan would be to a panel of oncologists and being quizzed by them on how they would treat me.  That was really interesting.  It was followed by my remapping for Radiation by CT

By the time I got back up to the ward it was after 1 o’clock .  They hooked me up for my usual afternoon antibiotic and when that was finished they then did my herceptin chemo so I was hooked up to the IV for about 3 hours.

Welll thats all the news for now.  Hopefully I will be able to write on Monday night that I am home from the hospital for good.

Still in here again!!

I am likely to be in another few days as the infection is clearing up apart from one particular end of the incision site which seems to be getting worse, which makes us wonder if I am dealing with a seperate bug in that particular part because its still red and inflammed whent the rest of it is under control with the IV antibiotics I am on. We are waiting for the infection specialist to have a look at it and see if they want me in longer than the couple of days they told me yesterday. Will update again as soon as I know what they say if I have time to get to this computer in the bookshop. Have radiation this afternoon and herceptin chemo and radiation tomorrow. Feeling quite sore from infection and but trying to stay active as it lifts my mood more if I am active than just sitting on my hospital bed.

Still in here!!

Had my ultrasound this morning. Good news is that I dont have a huge collection of fluid in the incision site or the ‘tunnel’ so they dont have to re-open me up to clean it out – bad news is that they are not letting me out of here until the infection shows significant improvement. Which means I am in here for the next few days probably, definitely the next couple. I went for my radiation this morning and will have my assessment for my herceptin shot (due on friday) and my radiation tomorrow. Just walking across from the main hospital building where my ward is to the oncology outpatients building. Guess the silver lining is that I dont have to worry about transport.

Will update on wednesday if I am still in here

Can’t stay away from the place!!!

Well – I am back in hospital (using the book shop internet access again) I had my first radiation on Friday at Auckland hospital and that went well but then when I went to the district nurses clinic back in Papakura to ge the dressing chqanged on my portacath removal surgery incision they didn’t ike the look of it and rung the hospital back up and I was told to get my butt back in there. spent Friday night in Assessment and planning unit (part of ED and admisssions) and then back to my usual haunt ward 64 (oncology ward) last night – basically what is wrong is the hole (tunnel) left by them taking the tube out that ran from the portacath under my skin to the vein in my neck had infection in it that was under control with the antibiotic tablets that I had been sent home with but as soon as I stopped them on Thursday it flared up again. they are doing a ultrasound on the area on Monday to see if it shows anything they need to intervene surgically with or whether I just remain on IV antibiotics until it gets better. had several of the ward 64 nurses greet me with “what are you doing back here?” and I replied “thats what I am wondering myself.” Will update from here again if I am in for a longer time but am hoping to be home within a couple of days.

Getting better

Just a quick update – I had the district nurse come this afternoon to change the dressing on my portacath removal site. Its looking good and the pain is subsiding enough to allow me to do most things for myself. They will pop in again at the end of the week but then it should be pretty healed. I also got a phone call from radiation therapy they want me to go in to the hospital tomorrow to have a parafin mold made to fit over gertrude. this is to allow them to include my skin in the radiation beam as the cancer is still in the lymph vessels in my skin. So that will be all ready for my radiation to start on Friday.

Complacency and curveballs

Well, this post is going to be pretty long to get you up to date with everything that has happened.

The reason I gave this the title of ‘complacency and curveballs’ was that I was feeling quite complacent 2 weeks ago – everything was starting to fall into place in regards to radiation and surgery,  and I was pretty organised for Christmas too.

22nd December

– appointment with my private surgeon -portacath had been looking a bit pink and tender since the night before but I felt fine.   Had a good appointment with surgeon as regards surgery and what will happen with Gertrude and left boob (removal of benign lump in and reduction of the left at the same time as complete removal of Gertrude (right boob) and some associated underarm lymph nodes)  She (the surgeon) did an ultrasound of both to see where things were at – Gertrude is still showing a reasonable amount of congestion.  While she was doing the ultrasound of my left boob she noticed the portacath looking a little pink so ran the ultrsound over it while she was there – portacath was implanted just above my left boob. She was worried by a pocket of fluid that was under my incision scar so called in one of the other surgeons at the clinic who does portacath operations – he also didn’t like the look of it and recommended that I was prescribed some antibiotics and that I popped into acute oncology when I was at the hospital the following day for them to have a look at it.  Because it wasnt that sore and I didn’t feel off colour the way I had the last time I didnt think it was too serious.

23rd December

– rung the hospital and checked when they thought I ought to come in to acute oncolgy (i.e. before or after my radiation appointment) they said to pop in before I went to radiation (same hospital, different building)  Not thinking that it was too serious I drove myself in  and went to acute oncology they looked at it took blood tests and then it was time for me to go to my radiation mapping and simulation.  They said for me to come back to Acute oncology as they would have the results of my blood tests but it was likely that I may have to be in overnight,

Radiation mapping and simulation – this is where they set you up for your radiation, they get you to lie on a CT scanner bed with your hands up above your head holding onto little handle bar contraption they have little cushions and wedges that they put in exactly the right place so you dont slide on the bed.  They do CT scans to check that the organs they want to radiate are in the right position,  with little metal wires and tags being taped to you to give the dimensions of what they want to radiate.  they also draw on you with marker pens during this time too.  When they are satisfied you are in the right position they then tattoo 3 dots on you one on each side under your arms and one on your sternum (these dots are smaller than a pin head but I joke with OD I now have more tattoos than she has (she has a butterfly on her back).  These tattoo dots are to ensure you are correctly lined up in the radiation machine each time (they line the dots up with laser cross hairs).  There was some concern about whether or not they could tattoo me as they had had a  call from acute oncology saying if I was too neutropenic (low white blood cells) they wouldn’t be able to do it.  Luckily I was cleared to have the tattoos otherwise the mapping would have had to be done again another day.  My radiation therapy starts on the 9th of January

Also while I was in radiation I was asked by my radiation oncologist if I would help prepare the radiation oncology registrars prepare for their final exams to become specialists.  Basically this consists of me being their test subject and being examined and questioned by them each individually (one on one) and then them being quizzed as to my condition and how they would treat me.  Given the rarity of IBC I am quite willing to be their test subject so if they ever have to treat another woman with it they will be better prepared. I’ll do this in a couple of week’s time.

After they had finished with me at radiation I headed back to acute oncology where it was confirmed that I needed to admitted at this stage they were hopeful it might only be overnight or perhaps a couple of days at the most.  By this time I had organised OD to drive OH up to hospital so he could pick up the car as it was obvious I wasn’t going to be driving myself home that night.

To make matters even more interesting Soulja Boi proposed to MD today and they got engaged and I had to hear about it in a phone call rather than being at home celebrating with them.

24th December

Not the way I had planned Christmas Eve – I was allowed to wander around the hospital in between IV antibiotics and doctors rounds, I am slightly neutropenic, which is unusual for this time in my cycle my lowest point is usually days 7-10 and by day 13 I am usually heading back up into the normal zone so yesterday and today I had a shot in my tummy of GCSF which is like a booster shot to get your white blood cell count growing again. 

 Thankfully OD knows how to glaze the Christmas ham, and OH was trying to figure out how to cook a turkey,  I hadn’t cooked one before either so I could only tell him to  follow the recipe that I had been going to follow. He did a really good job.  We also had to think about rescheduling the Boxing Day extended family gathering we had planned for our place.  Sis T was over from Oz so was looking forward to it being a bigger gathering than usual.

YD had come home for Christmas and was quite thrown by the fact mum was in hospital.  MD, Soulja Boi and YD came to visit me in the afternoon as did sis M.

I got told I could go home for Christmas lunch in between IV antibiotics so I am grateful for that.

25th december

Feels weird waking up in hospital, rice bubbles for breakfast instead of our family’s traditional bacon sandwiches, missing out on YD’s excitement as she investigates her stocking.  OH picks me up at 11am after my morning IV, having them 6 hourly so I have to be back by 4pm.  He brings me a bacon sandwich.  The girls, YD included have decided that they will only open their stockings and wait til I get home before opening the presents under the tree.  I am glad that they are of ages where they are willing to wait.  Can’t help but feel grateful that Gertrude didn’t happen until they were all grown up. This would be so hard for a family with little kids.  OD’s friend M popped in while we were present-opening and helped OD open her presents – got more enjoyment than OD, who already knew what her large present from us was.

Felt weird being a “guest” at my own Christmas lunch – OH and the girls had organised all the food and decorated the table. They did a really good job  too.  I had a couple of glasses of bubbly and a phone call from my bro and then it was time to head back to the hospital. 

26th December

YD definitely feeling the strain of me not being home for Christmas, the family is invited out ot my sisters for lunch to make up for cancelled dinner at our place and so they go after having me get on the phone to YD and tell her that it is ok that they go without me.  She was sure that they shouldnt go if I wasn’t going but I managed to convince her that it was ok. MD and YD came to visit me afterwards.

27th December

Starting to realise that they aren’t in any hurry to let me out of hospital.  they are keen to carry on with the IV antibiotics as it doesnt seem to be clearing up very fast, there is also some talk about the portacath having to come out.  they have drawn a line round the inflammation/infection, although it has improved it is not subsiding as fast as they would like it to.  I give the drawing the nickname of “my little rabbit” as that what it looks like to me when I look in the mirror.  The ends of the incision scar look like eyes, the portacath itself like a nose/mouth and the lines following the inflammation up the tube like ears. You cant see it so easily in this photo but trust me it was a lot like it

"my little rabbit"

"my little rabbit"

The antibiotic they are giving me is 2g of flucloxicillin -its irritating the veins in my hands that they are putting it through so they have to find a new vein every 36 – 48 hrs, just wishing it was having more of an effect.  The thing is I am not feeling unwell and not too bad other than some tenderness round the portacath site  -I almost feel like a hypochondriac being in hospital so long when I am not feeling sick.

28th december

A new oncology consultant was doing the rounds today and he confirmed what I had thought from conversations with previous registrars and consultants,  they are worried about the infection going elsewhere, to places like my heart valves etc.  he wants the vascular surgeons to have a look tomorrow but I already know they are going to say that the portacath needs to come out,  I am ready for it to come out – the convenience has been great and I would have loved to keep it in for the rest of my herceptin treatments but its not worth the risk. 

OH takes me out to Mission Bay for a picnic lunch in my between IVs “escape time”.  Had a little boy keep asking me what my hand was bandaged for (much to the embarrassment of his mother) so I told him the truth ” its to keep my IV line in place so they can give me more medicine when I go back to the hospital”  thought if I just told him it was sore or I had hurt it that would just lead to more questions.

29th December

Vascular surgeons came round and definitely want to take the portacath out.  I will go on the surgery list for tomorrow.  Had a busy day between drs and visitors and IVs was kept occupied all day.

30th December

Not allowed to eat before surgery but kept busy by a phone call from Southern Cross(our medical insurance) just checking about my private breast surgery  – they have already got the letter from the surgeon (even though my surgery won’t be till after my radiation and recovery time – probably middle of April)  The good news is that it will be almost totally covered by our insurance so thats good news.  I am still on the phone to them when the orderlies come to get me for the surgery.

I am so groggy after surgery and something is said about my respiration so I am put on an oxygen mask and have that on and doze for about 3 hours after coming out of surgery.

When I wake up properly I am in a lot more pain than before they took it out, I cant use my left hand/arm without shooting pains in the portacath site. They have charted all sorts of painkillers including morphine I can have by drip so this sort of pain must be expected with this sort of operation.  I managed to get by without the morphine, but used the other high-strength painkiller tablets to help me get to sleep that night. Still on IV antibiotics to round up any remaining “greeblies”

31st december

MY birthday- I had hoped to be allowed home today but they want to keep me on IV antibiotics for one more day.  And just when I think we have reached the end and I am about to go out to get some birthday tea with OH and OD they come in with the results of my blood tests from that morning. My white cell count is ok but my haemoglobin (red cell count) is low.  It had been fractionally low when I came in a week ago but has gone lower and to put me in the best health for starting my radiation they want to give me a blood transfusion.  They will give me one unit tonight when I come back from tea and another tomorrow morning,  This feels  very surreal to me and freaks me out slightly as I dont feel that sick, just sore from the surgery and they are talking about me needing blood transfusions.  I feel guilty that I am taking blood which may be needed by somebody more.  My mind keeps telling me there is no way I am sick enough to need a blood transfusion and the fact I really do need one is hard to get my head around.  I have a nice afternoon/evening out with OH and OD and arrive back at 7pm to sort out getting hooked up to my IV antibiotics and then the first unit of blood(red blood cells only).  Because the antibiotics have to be done slowly so as not to aggravate my veins too much it takes about 1 hour – 1 1/2 hours to do. then the blood transfusion takes another couple of hours.  We discussed trying to do both lots of blood but it is 12 midnight by the time we have finished the first one  so we decide its better for me to get some sleep before my 2am antibiotic and that we will do the last unit of blood after my last IV antibiotic at 8am

1st january

I spend all morning hooked up to the IV -first antibiotic then  blood with a toilet break in between.  Its about 12.30pm by the time we have finished.  the registrar has already been in and confirmed I am going home, and that when I am finished I just need to wait for my discharge paperwork to be done and then I can go home.  We had to wait for ages for the paperwork and then stop at the hospital pharmacy for prescriptions on the way out so didn’t leave until about 4pm. It felt weird to be home at last  and know that I could stay home,  still very sore to move left side and need help getting dressed as  I can’t lift my arm the right way to do it myself – guess this is what its going to be like after my breast surgery.

2nd January

First day at home and definitely feels weird.  I slept until 11am to make up for all the disjointed sleep in hospital and still felt the need to have another nap in the afternoon.  Still too sore and tired to write to my blog so save it for tomorrow.

3rd january

Still need a little help getting dressed but pain finally starting to subside to more manageable level.  Have spent 3 hours this afternoon writing my blog so now we are all up to date.  I wrote it in chronological order so to be sure not to leave anything out.  Feel free to ask questions if you need any clarification.