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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

Dancing on the ceiling

Oh what a feeling, dancing on the ceiling – these Lionel Richie lyrics accurately describe my feelings right now.

As some of you already know I saw my breast surgeon yesterday for the pathology results from my surgery – they were as follows

1.  the lump in my left breast was definitely a non cancerous fibroadenoma – whew!!!!

2.  that she had only removed 10 lymph nodes from my right arm pit which very large and she said almost gave the appearance of two lymph nodes joined together (double lymph nodes) . all 10 were negative!!!!!

that in the sectioning of my breast they had done at present they cannot find any trace of the cancer!!!!

They are resectioning to double check so this isnt totally official yet but at the moment there is no evidence of cancer!!!!!!!

What does this mean ? – It means if the recheck comes back clean as well I am officially in remission or NED (no evidence of disease).  I was not expecting such a outcome at this stage – I was sure some of my nodes would still be positive and that there would still be a small amount of cancer in my breast.  but that they had got clear margins around it.

Part of the reason I didn’t post this news last night is that a) Iwas having a glass or two of champagne to celebrate and b) because I had the oncologist visit today, I could clarify what it meant in terms of treatment and prognosis

This according to Dr H is what it means. – yes I’m in remission as long as the recheck comes back clean.  The chances of me having recurrences and metastases is very much reduced.  There cannot be a certainty that there will not be secondary cancer by the cancer cells migrating elsewhere but the fact that the chemo and radiation had such a good effect on my breast – it is hopeful that the chemo also killed the microscopic cells which may have just been about to set up house elsewhere in my body. 

The other thing that came out of today’s appointment is that I will be stopping the herceptin in August,when I will have had my years worth.  When I was originally diagnosed there was a possibility that Dr H would keep me on Herceptin longer – but because I have had such a good response we will stop it at the year.

In view of my “Is the war over?” post,  Gertrude has not only surrendered but we have totally annihilated her troops!!!  Victory is most definitely ours!!!

Yesterday I couldn’t stop smiling, while I was with BS all I kept saying was WOW!!!  It is just such a huge relief to have this sort of news.  I wanted to dance and jump around for joy but my surgery wouldnt allow me to so that – but man, was I dancing on the inside.

Now I just need to concentrate on recovering from my surgery – this will take another couple of weeks.  I have signed up for “Pink Pilates” which is a programme that was started in Central Auckland but is now nationwide including a South Auckland provider who is only 2-3km away from where we live.  This is a combination of exercise programme , physiotherapy and other welllness techniques to aid full recovery from surgery and treatment. 

This will hopefully mean that by the time we go to Australia at the end of June my fitness should be really good and I should have no lingering effects from surgery.

This brings me to what will become of this blog if I am in remission.  This blog was primarily set up to help keep people informed of my progress in fighting Gertrude.  With Gertrude gone – should I carry on?  I think there is a place for this blog to let you know how I am doing in the recovery phase and as I discover how to live my life again.  Things will never be the same as they were before Gertrude and you are welcome to travel with me as I discover the whole new world out there.

Thank you for all your support thus far

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Is the war over?

Thought seeing it is ANZAC Day I would give my blog post a title reflecting it but also because I refer to this as my ‘battle’ with Inflammatory
Breast Cancer

Well a quick run-through of the week that was – about the only thing the private hospital lacked was a wireless hotspot for me to do my blogging from.
 On Tuesday I arrived at the Brightside hospital at 6.30 – I had got up at 5.30 to have shower etc and left home right on 6am. Admission procedures followed, included weighing me where I was another 6 kgs lighter than I had been at the public hospital a week and a half before. I dont think they are calibrated correctly but will check weight when I go back to visit my oncologist at Auckland hospital this week –  interesting thing is I weighed the same on the “Brightside” scales after my surgery so not sure what is happening there especially as BS my surgeon was saying Gertrude was so big she couldnt weigh it when she took it off because her scales in the operating room only go to 1.5 kgs

I had an absolutely lovely anaesthetist CK who was very friendly, much more of a people person than some of the anaesthetists I’ve met.  He took me up to theatre and gave me my first shot of “gin” just after 8 am.  I drifted off during the following discussion of wine versus gin & tonics. I don’t remember anything from then until coming to in my room with OH already in attendance. Asked him what the time was and he said about 1.30pm.  BS had rung him about 12.30 to say operation was over and had gone well.  Feeling very drowsy and was in and out of sleep until OH left about 8pm he said I was only with it about 30% of the time for most of the afternoon rising to about 70% by the time he left. The first time I went to get out of bed to go to the toilet I had to get OH and the nurse to help me. It was very painful to move and had to get out of bed slowly. I had 3 drains in, two on the right side and one on the left.  I felt quite woozy that first time and almost fainted.  When I repeated the performance later that evening, I was much better, still slow and painful but no dizziness.   I was hungry for dinner, had just ordered some chicken soup but when I went to eat I promptly threw up, so just water was on the menu for Tuesday – they also had me hooked up to IV fluids until Wednesday morning.  I went to sleep for the night at about 9pm although they woke me up a couple of times to take my blood pressure etc I slept really well. 

Wednesday morning I was sick again just before breakfast arrived and I think that got the last of the anaesthesia out of my system because after that I was fine, I ate about half my small breakfast of scrambled eggs and felt fine – but thought I would leave it at that for my stomach to get used to having food in it again..BS came in and inspected both operation sites and was very pleased took the post operative dressings off and put more normal dressing on.  I had had large wide crepe bandages over the op dressings and they also went just leaving a long narrow waterproof dressing on my mastectomy side and steri strips and a couple of no stick telfa type pads on the other..  I was surprised to look down and feel no negative emotion seeing the flat space where Gertrude had been only a feeling of relief and a physical feeling of  light and airiness instead of the heavy pressure that Gertrude had become.  My other breast was exactly the size I had imagined and although it is a bit puffy due to post op bruising etc I’m sure I will be very happy with it.  Wednesday morning dressing change was when they took the drain out of my left side.  I start being able to get myself out of bed to go to the toilet although still have a bit of a problem with the drains attached to bottles on the right hand side, having to cart them to the loo with me each time I go.  By Wednesday evening I have devised the way to do this and amazed at the mobility I have especially the use of my right arm which I thought was going to be much more immobile.  My very first visitor was my “IBC sister” L and it was so nice to see her.  Her having “been there, done that” means I dont have to explain to her how  I’m feeling, but she is surprised to see how perky I am.  OD then OH arrived shortly after and so I didn’t need to call the nurses for much as they were on hand to help with my drains etc.  MD and Sis M visited in the evening after work and I think everybody was surprised at how much I had recovered including me. Including being able to eat my tea using both arms etc and giving myself a body wash although I needed help with my back and my legs.

Thursday was when I definitely felt more like myself, the post-operative pain was subsiding to a murmur with judicious use of painkillers and not doing anything too fast or twisting the wrong way.  BS still very pleased with progress and the drain draining fluid from my chest wall was pulled out as it had only collected about 50 mls since the operation.  With only one drain left to maneuver around this left me much more mobile and BS suggested that I go for a walk into the hospital garden later that afternoon just to get my circulation going properly again – one of the complications of surgery is the risk of DVT and for the first two nights as well as sexy white support stockings I had worn blow up compression devices called scuds that gradually inflated upwards up your leg and then deflated.  I devised how to hook my drain bottle under my robe so no-one could see it and so I wasnt having to walk around with it in my little hot hand.  After my body wash in the morning I got in my own pjs (two days in a hospital gown was enough!!) When OH arrived later in the afternoon we took a stroll round the little garden, me doing two laps of the path round it – shuffling and taking tinier steps than I usually do but at least I did it.

Thursday was the day I started really appreciating the difference between public and private hospital food; for breakfast I had a croissant, jam and coffee with a small dish of stewed pears on the side

For lunch I had a caesar salad which impressed me so much I took a picture of it. and a little fresh fruit platter on the side.  I also loved the variety of drinks you could get, I ordered lemonade for lunch. 

my caesar salad

my caesar salad

my lunch

my lunch

BS’s nurse from her rooms came to check up on me and got a surprise to see me sitting up in the armchair, she had expected to see me on the bed but because I was more mobile tried to vary my position in bed and in the chair sometimes just for a change.

Friday  I had more mobility again no longer shuffling but walking a little more normally I had to wait for BS to visit she didn’t come til the afternoon but she was still happy with progress although there had been a little seepage from the suture line on my left side (reduction side) I had also reacted a little to the tapes but all in all she thought it was fine to plan for my discharge today.  I was able to order a celebratory glass of wine from the menu to go with dinner last night.  When OH came up in the afternoon it was not good weather to go to the garden so did a couple of laps of the hospital instead – going from the end of my ward to the end of the other ward at the other end of the building.

BS visited me bright and early this morning and authorised the removal of my final drain.  so I’ve come home with no drains in and fairly mobile.  I have had lots of people telling me to take it easy, rest and recuperate so I am going to behave – do the exercises and level of movement mobility that is recommended but I am hopeful this is the start of a very good and fairly rapid recovery.

I get the pathology results on Tuesday so it will be interesting what they say.

Back to my battle analogy – when L came to visit we had a talk about how some people don’t like to use the battle analogy for their dealings with cancer but I think it is very apt.  My “war” has consisted of three distinct “campaigns” chemo radiation and surgery and we will find out on Tuesday whether Gertrude has “surrendered”.  The ongoing herceptin chemo can be likened to sending in the UN peacekeepers and ongoing monitoring  – CT’s blood tests and the like compared to surveillance missions.  If there is an ‘official surrender’ we still have to be aware that there are ‘militants and terrorists’ microscopic cancer cells possibly among my normal body cells that may be needed to be battled against in the future.   So that is my thoughts on my own personal war, this ANZAC Day.

So glad to be home and will probably update blog on Tuesday and Wednesday after my appointments with the surgeon (Tuesday) and Oncologist (Wednesday)

1 sleep to go!!!!

Well here we go…. well only one more sleep… in 15 hours I will be on the operating table.  It was a bit nerve-wracking today waiting for the hospital and surgeon to call to confirm the operation was going ahead.   Bit of figurative nail biting while waiting after the surgeon’s nurse had rung to see whether or not I was all prepared, only to ring back a hour later to ask whether I had had my preoperative blood tests (which I had last Thursday) as they had not received them and that we had to make sure my blood counts were good.  I left them to sort it out but couldn’t resist ringing back later this afternoon when I hadn’t heard anything  just so I could relax and know everything was on track.  The blood test results were in and all good and everything was full steam ahead.  Huge sigh of relief. 

The other thing that suddenly came to mind this weekend when I was thinking back through the journey that Gertrude has taken me on and I realised that tomorrow it will be exactly 9 months since my breast “blew up”.  Sometimes it feels like it has been that long and more that I have been fighting Gertrude, but in other ways it seems like the time has flown.

I have been inundated by good wishes by text, comments and other means,  if Gertrude has had one good side effect it has made me realise how many people are there supporting me through this and for that I thank you all.

I was talking to B my niece that is a nurse this afternoon and we were discussing the fact that I am going to be under anaesthetic for quite a few hours.  There are a few side effects that I need to watch out for – the most common is DVT (deep vein thrombosis) I will be wearing very stylish support stockings and also injected with clexane a blood thinner to prevent this as much as possible.  I have resigned myself to being pretty non-coherent for most of tomorrow as I think it will take a while to throw off the aftereffects of that much anaesthesia.

I will be in Brightside hospital in Epsom til next Saturday but I dont know whether or not I will be able to update the blog from the hospital.  If there is anything major you need to know sooner OD will update for me otherwise I will report in full when I get back home.

Thank you all again for your support and keep sending vibes my way for a speedy and incident-free recovery.

4 sleeps to go…..

I have had a couple of busier days. …Don’t worry not too busy just doing some things that needed to be done.

Yesterday I had pre- operative blood tests and also saw my dentist for a fitting for the wax mold for my new teeth -just to check it sitting right before they make the real thing.  It was fortunate that the diagnostic lab and the dentist are in the same place as it was very easy to go from one thing straight  to the other.  yesterday afternoon I attended a Lymphoedema informaiton meeting at the Cancer Society in Auckland.  I found that very informative and know it will help me stop lymphoedema before it starts or gets too serious.  Lymphoedema is swelling caused by the lymph fluid not draining correctly due to the lack of lymph nodes.  There are exercises I can do and precautions I can take – for example wearing a compression sleeve especially for flights or making sure I dont get any trauma bumps bruises bites scratches to that arm. 

Today I had my “hopeful” final review with the radiation oncologists.   I will not see them again unless there is treatment to be done to an area not already radiated.  They agree with my assessment of it being a bit of a waiting game after surgery.  They complimented me on how well I look and I am getting that a lot lately.  I guess people don’t expect me to be looking as good as I do after all that is happened to me! 

For both my trips to Auckland, yesterday and today, I took the trian as it is a little more relaxing than driving in.  Today instead of catching the Link bus back to Newmarket, I wandered back down by myself.  I was so pleased that I had no tiredness, or breathlessness from walking, which I had been expecting with the cold I had all week.  I bought myself another pair of sneakers while I was there.  These ones are more street style than exercise style so I can wear them when I do similar walking jaunts.  

Also while I was up there.  I got a phone call from my IBC “sister” L (and a very small sisterhood it is) She was so happy for me that I finally was getting my surgery.   It was good to hear from her and I always find it reassuring to do so as she is a 9 yr survivor. 

The final thing I did while I was out ,was when I got back to Papakura to visit the shop that provides post mastectomy bras etc. I will pop in and see them about 6 weeks after surgery – two weeks before our trip and get myself my prosthesis and more bras for taking to Aussie.  I will also get a compression sleeve etc to prevent lymphodema from the flight.

OH and I are having a quiet weekend – we will not see YD this weekend – and hopefully just have some couple time.

The lighter side of having surgery

Forgot to mention in my last post – one of the things I have found myself doing while I am out and about lately is surreptitiously looking at other womens figures, especially those with around the same build as me, and trying to figure out what I am going to look like with smaller boobs.  I do hope I am not too obvious – I would hate to think one of these women saw me looking at her breasts. 

I also booked myself a haircut for a couple of weeks before our trip.  I really like the way my hair is looking at the moment but OH doesnt like the fact its shorter than his.  So I will grow it for another month or so, so that when  I go to the hairdresssers in June she has got a little bit of length to play with and can come up with a short cute style for me to have while we are off on our holiday.

6 days to go

Well only six more sleeps until my operation.  I have had another cold this week but only viral and OH and OD  nagged me to go to the Drs.  I can feel it starting to break today so hopefully by Friday I will be back to normal and surgery can go ahead.  Easter was good – YD, C and A enjoyed their Easter egg  hunt and I had a good day.  I woke up on Monday with this cold but OH really wanted to have dinner with his friend S and her husband G so we went up to Auckland.  It was a good night but I was feeling quite tired by the end of it. 

OH is worrying me a little at the moment – I think we are both stressed about the outcome of the surgery but he wont talk to me about it.  I know he is trying to “protect” me by not talking about it but he is worrying me by how tired and stressed he has become lately. 

One of the realization that came to me when talking to S & G (and their daughter J) was that I actually feel that whether or not I am going to get secondary cancers is pre-ordained.  They are not doing any surgery on my lymph nodes at my collar bone so there may be some microscopic cancer left there.  There is also the chance there is microscopic cancer left in the chestwall or lymph area under my arm.  The thing is neither the Drs or we will know if they are still there until they grow big enough to make their prescence known.  All it takes is one cancer cell to create secondary cancers.  There are steps I can take to be in the best physical shape to not succumb quickly to the cancer but I actually can’t do anything to stop it coming back if it is going too.

That being said I am not going to live my life assuming I am going to get secondary cancers.  I will get on with living my life – the only thing that will change is that I wont put off until the unforeseeable future some of the  things that OH and I having been putting off doing because of the girls education,YD’s needs and our general lack of diposable income.  The other  thing I have decided is that I want to get really involved in Breast cancer awareness especially around Inflammatory Breast Cancer.  I will use the skills I once employed doing advocacy for Special needs children and their families to publicize the need for more education on this rarer form of Breast cancer.

As my GP said to me when I saw him  – “don’t think about the figures and percentages for survival because all that really matters is whether you personally are going to survive”.  I will live my life as a survivor but one who has learnt to make the most of each moment.

How do I feel?

I have been talking this week to my friends about the fact that surgery is fast approaching.  They ask me how I feel about that and to be honest it is part relief and part terror. 

Relief because this is finally going to get Gertrude off my chest both figuratively and literally.  Up to now I have been “ok lets get on with it – whats the next step in the treatment? – ok let’s go!” and the surgery is the culmination of the treatment that has gone before. 

The terror part comes from this is where we find out how successful all the other treatment has been – whether or not there are clear margins around the cancer when they take off my breast or whether or not it has gone into my chest wall.  I get the results of the histology a week after surgery and that will be when they tell me how much I have beaten Gertrude. 

But even if there is clear margins there is also now the fact I will always be on edge to whether or not it has or will come back, and that is just a waiting game.  Life is not going to return to the life I knew before Gertrude. No matter how much I am positive and do all the things to try and prevent recurrence (eat healthy etc) ultimately I have no control over whether it returns or not. 

I remain hopeful that this will not be the case, and as Sis M wrote in her last comment ‘I will remain my usual chirpy self’.   Even when I am thinking negative thoughts I never let them get me down for long.  If there is one thing I have learnt the most from having Gertrude is that letting yourself feel down is just a waste of time and energy. 

I also need to explain why I have decided to name my prosthesis etc.  Its a control thing.  I have so little control over the fact that from now on I will have to wear things in my bras because I won’t have a breast that by naming them I regain a little more control. I also make it a little more “user-friendly” rather than just thinking of them as just a lump of wadding or silicone that  I have to stick in my bra every day.

I had my herceptin chemo yesterday and then went to the dentist to get the impresssion done for my new top plate.  I also went Easter Egg shopping.  YD is coming home tomorrow (Saturday) and we will be going out for YD’s family birthday dinner tomorrow night.  On Sunday we are having OD’s friend (and my “adopted daughter”) M and her two daughters, C aged 4, and A nearly 2, visit for an Easter Egg hunt and lunch. 

OH and I are hopeful to get out for some “couple time” later this afternoon and on Monday we might be visiting friends. 

Happy Easter everyone!!

YD’s Trip

YD and I had a wonderful trip – very busy but not too tiring – we just took things at our own pace and did things in our own time.  I will be putting photo’s on my facebook page and on YD’s facebook page and on our joint bebo page.  If you  would like to see the photos and are not already friended to me on these pages and would like to be I will put a link to the profiles once I have uploaded  the photos.

But as a quick peek of our trip here are some photo’s – good food

crepes at the farmers market - Kerikeri

crepes at the farmers market - Kerikeri

Mezze platter - Cafe Jerusalem

Mezze platter - Cafe Jerusalem

 

good buys – some treats I bought for myself

scarf,purse, and hat from Paihia craft market

scarf,purse, and hat from Paihia craft market

 

good scenery

Kerikeri stone store

Kerikeri stone store

YD and I at "Hole in the Rock"

YD and I at "Hole in the Rock"

Highlights of our trip – Friday afternoon drive up to Kerikeri with a coffee/iced chocolate stop at Whangarei, unpacking at the Holiday Park and dinner at the nearby restaurant.  Saturday – morning exploring Paihia including Craft market, afternoon  boat trip to see dolphins and to the “hole in the rock” Dinner at cafe in Kerikeri.  Sunday – morning Kerikeri Farmers market, Rewa’s village (where YD saw a picture of her 5x great grandfather on her fathers side), Kaliedoscope World, fudge factory, chocolate factory, – afternoon trip via car ferry to Russell. dinner was takeaways from McD’s and Subway.  Monday trip home stopping off at Kawakawa, Kawiti glow-worm caves and Kaiwaka (where I was born and lived for the first few years of my life)

The hardest part of the trip was the driving up there and back.  Gertrude reacted a bit more to all the activity but was kept pretty much under control by medication.  YD actually got given presents by the stall holders at the craft market when we were talking about the fact we were up there for her “birthday trip”

paua shell and purple scarf - YD's gifts

paua shell and purple scarf - YD's gifts

Being a little cynical but I guess the combination of  “Mum with Breast Cancer” with “Daughter with intellectual disability” was a bit of a combination that bought out people’s sympathy/ generosity.  I did appreciate it and YD loved it.

Yesterday I was busy with an oncologist appointment just checking that the surgery was going ahead. They want to see me after the surgery just to discuss the results. I also dropped off my preadmission paperwork at Brightside hospital (where I am having my surgery) and went to see M, the travel agent that is organising the trip I won, to pay for the trip extras we have added.  I now have the trip itinerary in my little hot hand and am so looking forward to it.

Well…

I almost called this post murphy’s law but then thought

a) that would jinx it

b) it would give you the impression that it was all bad news.

The Murphy law part of it –  anything that can go wrong will go wrong  – is just the little things that keep happening that stop me being able to relax.  After writing on Tuesday about the amount of energy I had, I woke on Wednesday morning full of a cold.  I can’t afford to be sick this close to my operation and so off to the doctor I went and sure enough I had a upper respiratory tract infection.  On more antibiotics!!!  I am still going away with YD this afternoon but will take things slowly if I need to. 

Yesterday morning I woke up and after putting a load of washing on, sat down at the computer and when I put my hand down by my leg – I scratched myself with my engagement ring  – puzzled as to why it was scratching me – I looked and found the large sapphire from the middle of my engagement ring had fallen out. 

Have retraced my steps yesterday morning and no sign of it, so we have a feeling that it has gone down the drain or is stuck in the drainage system of the washing  machine. 

As I was saying to OH, I cant help thinking that all these little things (the infection, my teeth, my cold, my ring) I don’t know whether its karma to balance the really good thing thats coming (remission after surgery) or whether its an omen for things to come. Silly thought I know, but the fact is you have all sorts of ludicrous thoughts go through your head at  a time like this.

Now on the upside – had a very useful and informative meeting with the Breast Surgeon and her nurse yesterday afternoon she is not happy that my portacath hasn’t completely healed but as long as it is not infected and continues to heal for the next 2 weeks surgery will go ahead……

Drumroll please……….Gertrude comes off on……….

Tuesday, 21 April 2009

We talked more about the surgery and what she will do.  Southern Cross will cover everything so that is really good.  She will take my whole breast off on the right side down to the chest wall and extending it under the arm to get the little roll of fat that is part of my breast there.  She will take out approximately 20 – 30 of the lymph nodes from under my arm leaving about 20 in place.

On the left side she will remove the benign fibroadenoma and do a reduction including liposuction of the little fat roll under that armpit.

They gave me the bra I have to wear after surgery plus my first prosthesis – its a little envelope filled with soft cushion wadding material.  This is what I will wear while I am healing

This is a picture of  the bra I had to buy to fit Gertrude in (the white one) and my new post- surgery C/D cup bra (black) Geez it looks tiny beside the white one.

before and after surgery bras

before and after surgery bras

I have decided to call my little cushion boob Cushla and when I get my silicone prosthesis it will be called Pruscilla (Pruscilla prosthesis or Cilla silicone).  Cushla looks quite big at the moment because they gave me extra filling so that after surgery I can play around with the filling levels and get it looking as close to possible to the left one.

Cushla

Cushla

 

A week after the surgery I should have the results of the histology after they have looked at everything under a microscope so here’s fingers,toes and everything crossed that it is all good news.