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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

What we told YD

and what she told us….

Most regular readers of my blog and people who know me in person know our youngest daughter (YD) has special needs – stemming from a congenital deletion of part of her 12th chromosome. 

She is 23 years old and has been living away from home in a residential services setting since a few months before I first got diagnosed with Inflammatory Breast Cancer (IBC) in August 2008.  To a certain extent this has enabled us to ‘protect’ her from some of the realities of my cancer treatment and also let me deal with my treatment without trying to be her primary caregiver too.  She knew I still had cancer and that I was taking chemo but now was the time to tell her some important facts….

YD  came home for afternoon tea yesterday (Sunday), we told her I was getting sicker from the cancer and she investigated the electronic laziboy (she loved the fact it had a remote, that the buttons made it go up and down) and  wheelchair that had been supplied by the hospice, we talked about if we went out with the wheel chair she could help push the chair, then she got worried and went off to the kitchen to get reassurance alone with her Dad and they talked about the fact that I was a lot sicker now and that I was going to keep getting sicker – that the cancer was never going to go away.

She had a little cuddle and a cry and went to her room and found her cabbage patch doll ‘baby Tina’ and talked to her – ‘baby Tina started crying’ Dad (OH) and MD went into her room with her. They kept talking to her and she kept saying she was worried and that mummy would get sicker.  She asked was Mum going to die – they said yes

She asked if I was going to die at home or at the hospital – they said I was probably going to die at Hospice – the place she has visited where E (hospice family support manager) works. She then wanted to talk to Baby Tina and told her how worried she was and that she was sad and she had a little cry.

We talked about who the people were that she could talk to when she was upset, the family, some staff, some friends.

She then came out of the bedroom and sat with me in the lounge and asked MD when Mummy was going to die and we said Mummy was not going to be alive for her (YDs) birthday next April.

I  said I was now like my mum (Grandma J) and would  get more sicker fast like Grandma and Grandma died quite soon after she got sick and that we dont know how fast that is going to happen for me. She worked down through the birthdays that I might not be around for – OD’s and C’s birthdays (March) or maybe even be around for my birthday (December) or MD’s (October) – we do not know how fast this is going to happen so it is hard to give her specific time frame.

She was expressing a lot of emotion through Baby Tina – we could find her faster than ‘Baby W’  her older cabbage patch doll doll on the spur on the moment yesterday but will find ‘baby W’ by her visit home on Tuesday.  I think it is really important that baby tina or baby Williams accompany here on visits to me and that she can take them home to continue the emotional processing. We printed out some photos of my laziboy and wheel chair for her take home and she also drew a picture of my chairs and of her , dad (OH), MD and baby Tina sitting on her bed talking

Tara’s drawing – she draws a lot to process things

Just before she left she bought up the subject of whether or not I would be buried or ‘made into dust’ and I told her my idea that I thought I would like to made into dust but then my ‘dust’ be put in a box and be buried or put in a special wall at the cemetery with a notice that said my name etc and she could go and visit and take me flowers at the cemetery and ‘talk to me’ like she does when she goes to Poppa and her godfather’s graves  – she thought that was a good idea.

As she was going out the front door to go home – she wanted me to give Baby tina a hug rather than herself  so I gave Baby tina a hug and told her to ’look after ‘YD’ ’.  YD liked that. As they left she also asked OH and MD whether I was going to be here for Christmas and Boxing Day. As OH started to answer ‘Probably not’ – YD had already started to say “ I want to light a candle and put it by Mummy’s bed for her not being here at Christmas” they said it was a very good idea and that they can do that.

Once MD and OH got toYD’s house with her, YD went straight to her room to reunite ‘Baby Tina’ and ‘Yellow Ted’.  She stood on the side of her bed and sat them facing each other to have the following ‘conversation’

Baby Tina: “ Your owner (turned towards ‘YD’ then back to Yellow Ted) ‘YD’ was upset tonight”

Yellow Ted: “ok Baby tina , break it down for me”

Baby tina:  “ Mum is going to die, Mum is going to die in hospice”

Yellow Ted “ I understand,… I understand”

Baby Tina “ So ‘YD’ is upset”

Yellow Ted:  “I understand”

YD then lined up Baby Tina, Yellow Ted and Pink Ted and said they could look after each other and ‘YD’.

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Busy schedule then disruption

This is what I wrote on my ‘Get out Gertrude’ Facebook page 2 weeks ago:

“running out of time to do blog posts at the moment – I know I should be taking it easy starting new chemo but since we got back from our second mini break my week has looked like this… Monday: up to Cancer Society to do 2 hour relaxation course, came home had nap, visit from my sister.  Tuesday: ECG and onc appt to get go ahead for chemo, Wednesday: Chemo Thursday: theoritically a stay at home and rest day but had visits from Cancer society liaison nurse , phone calls from the hospital and a vist from my friend Jayne.  tomorrow (Friday): we have meeting with a lawyer to redo our wills, and then back up to the hospital for a pre-admit visit to discuss putting new portacath in as I am running out useable veins for chemo etc. Saturday: I have a planning day for my committee work with Breast Cancer Aotearoa Coalition. This will just be sitting & talking so I think I can manage it.  Sunday may be an actual rest day!!! Monday: will either be relaxation course then portacath op or just portacath op depending on when they schedule it.   Wont find out til after preadmit visit tomorrow.  Tuesday: going to uni for the one paper I am sitting this semester.  Wednesday: Chemo, Thursday: hopefully a rest day, Friday: meeting with family support services (hospice) to talk more about what to put in place for YD somewhere in there I may fit in a short blog post but I cant guarantee to find the time”
then this happened:
“I had  a bit less routine outcome to my port insertion yesterday.  I had a touch of acid reflux during the operation (under general anaesthetic) and some went into my lung.  I was kept in overnight and until my oxygen saturation stabilised. they also have me on antibiotics to make sure if there is any damage to my lungs it doesnt get infected.  They say it should rectify itself over the next few days but I have to take things easy.  Still have to go back to hospital tomorrow for chemo – feel I’ve been living there most days the last two weeks but at least now my chemos will be easier and they wont be trying 6 times to find a workable vein”
Because of the irritation in my lung I had quite a cough when I went to chemo last Wednesday so I had to go and get the all clear from my old friends, the doctors at Acute Oncology, before chemo could proceed.
My Friday meeting with the hospice family support service went well and I feel like we are getting things in place for YD.
I dont whether it was the combination of high strength antibiotics and the chemo but by last weekend I felt absolutely shattered.  I had intermittent headaches and cold clammy sweats and slept most of Saturday and Sunday.  Sunday also bought the delights of vomitting and diarrhea.  We narrowly missed having to go to the hospital to get them to check me out.
By Monday I was coming right and on Tuesday I felt almost normal and managed to go to my university class and have a really good day. And then of course Chemo rolled around again on Wedenesday.  – I have managed to get this changed to Thursdays from next week on as it suits my pool of ‘chemo chaffeurs’ better.
Yesterday (Thursday) should have been a rest day but I had made the mistake of not taking my pain meds refill in and as the initial prescription was filled at the hospital pharmacy I have to get the refills there. so I took myself up on the train to get them.  From the next prescription I will fill them at our local pharmacy as this is the second time I have forgot and it is just too far to go just to get meds.  Unfortunately they will only give me 10 days worth at a time.
Today although I can feel the chemo side effects kicking in a bit of nausea, a lot of fatigue etc, but by setting my laptop up on my bed I have been able to catch up on blog posts and other correspondence and still have enough energy to go out with OH to a work function tonight.

Not normal words

Hospice

Morphine

Scary words aren’t they?

As one of my friends said they are words you associate with people who have only got weeks to live, not with me.

Have I only got weeks to live? – the answer to that is a resounding NO!!

Yet I have both these words in my life now.  I have struggled against my own psychological perception of these words, and they butt up against my perception of myself as someone who doesn’t need these things.  How can I kid myself that I am living a ‘normal’ life, albeit with cancer in it, when words like that are being used in conversation about my care.

I resisted being put on morphine for pain management for  a long time. “Nah I don’t need it – I’m not in that much pain.” – Yeah right.  The larger tumor in my liver is compressing nerves against my ribs and I have been in a lot of pain, and it is getting worse.  My pain medication for the past month or so has consisted of low dose slow release morphine, panadol and 75mg diclofenac tablets with other faster acting low dose but faster acting morphine for any additional break through pain.  I am still allowed to drive if I have not taken too many additional pills, but on days when I am in a lot of pain I tend  to stay home.

Pain management is one of the areas hospice can offer better support in and is one of the reasons I agreed to be referred to them.  When the subject of hospice was first brought up by RI my Cancer Society Liaison nurse a couple of months ago,  I said that I didn’t need them and to a large extent I still don’t.  But after talking it over with Dr H, my oncologist, who said getting into the hospice system before I really needed them was better and also that they could help me with pain management (being more expert in it)  I agreed to be referred.

One of the other reasons is that the hospice offers Family Support services and counselling and has resources  to help us with ‘what’ and ‘when’ and ‘how’ to tell YD what is going on with me.  Because I have been in and out of treatment for the last 3 and a half years, to a certain extent this way of life has become normalised to her. “Mum’s just having more medicine”. She lives away from home and has been protected from the real toll dealing with ‘Gertrude’ has had on me.  If we are going to have to tell her that the medicines aren’t working anymore, we have to do it in a way she understands and so that she doesn’t get fixated (with her autistic tendencies) on me dying and on when and how that is going to happen.  For those of you who know YD, I’m sure you can imagine as we can all imagine her saying “when are you going to die, are you going to die before my birthday?” (or other such event) and asking the question and other similar questions over and over again every time she sees me or talks to me on the phone.  I’m not sure it wouldn’t drive me a little bit crazy as well as not being very healthy for her.  It is something we really need some good resources around, to help prepare her for that eventuality, without her becoming too fixated.

Why am I telling you about hospice today – because I had my initial assessment visit from the hospice this morning.  They now know who I am and what I might need or want in the way of support in the future.  For now they will just ring every couple of weeks to check how I am and whether I need anything from them and they will get their family support services to look at what resources they can help us put in place for YD

We find out on Wednesday at my oncologist assessment appointment what the next plan is.  We think it will be moving onto the last chemo left to try.  We know it will only work for a certain length of time and then ‘Gertrude’ and her spawn will start to take over.  Only a spontaneous miraculous remission is going to stop that from happening.  I may die of cancer sometime in the not too distant future but as of this moment I am not dying of cancer,  I am just living it with it the best and only way I know how.

 

Guest post by MD

I’m not the only creative writer in the family, both OD and MD have talents in that direction too.

MD is finishing her degree in primary (elementary) school teaching and as part of that she has to take a general education paper, that is one not related to the other course papers.  She decided to do an English paper and one of her assignments was to write a short narrative essay on an important experience.  This is what she wrote – she got a great mark for it and I think it captures some of our family dynamics perfectly.   She gave me permission to put it on my blog.

Standing in the gardens surrounded by flowers, trees and shrubs, I thought of the photo on the wall at my parent’s house. It was old, the frame was starting to fade and the gold detail flake away. The photo itself was still filled of colour and I could still remember that day. Eighteen years had passed since that photo was taken, my mother’s hair once long and curly is now replaced with a short wispy cut and there are scars on her chest and neck from her endless battle, my dad has aged with time, and the three girls are all grown up. In the photo I was six and wearing my favourite blue dress with little black bows printed all over, my older sister was wearing a colourful jumper and her long dark hair tied up in a bun. My little sister YD standing in the middle of us two, a big smile on her face as we held her hands tight to make sure she stayed in place. Mum and Dad were standing behind us, you can’t see it but they were holding YD in place as well. It takes quite an effort to get a good photo of YD.

“Smile”, eighteen years later and I was standing there, holding YD’s hand so she stayed in place once more.  We moved around the Botanical gardens, having
photos taken in various different areas. We stood by an old wooden gate with
rusted bolts and nails, moss was starting to grow over the wood in patches and
it sagged close to the soft dark soil on the ground. My black heels sunk slowly
into the ground like an anchor lowering into place. Photo after photo was
taken, and my smile started to fade and feel fake as we moved again to a new
part of the gardens for a change in back drop. Then I heard it, the start of
one of YD’s meltdowns. She grizzled and groaned, mumbling about how she doesn’t want any more photos, then it developed into a cry and scream.  I could understand her frustration; we had been taking photos for over an hour. People started to stop and look; this is nothing new to my family. I walked up to my little sister as she was hunched over sitting on a seat by a big native tree, and gave her a long and tight hug.
She cried and told me how she had been trying hard but it was boring, she does
not like waiting, its part of having autistic tendencies. I asked her why today
was important. Why were we getting photos taken? She replied “because the other photo is old”. If only life was so simple, we were getting a family portrait
taken as we do not know how much longer we have together, because my mum is
sick. YD knows mum is sick but she doesn’t need to know the severity until she
has too.

As we walk towards the cafe to have afternoon tea, I put my arm around YD’s shoulders and tell her she did well today. I feel an arm around my waist, its warm and pulling me tight. The hand is pale and thin. I feel an immense amount of happiness in that moment, its YD’s hand. She doesn’t physically show emotions like that very often. We share a special bond my little sister and I, it’s not a normal relationship but its only one that we understand and I am her best friend.

the photographer captured the moment

Our first family portrait on the wall at my parent’s house shows a young family with an unknown future ahead of them. Life has changed in many ways, we have all grown up and moved out of home, my big sister is getting married, YD has lived longer and overcome obstacles we didn’t know she would.
There have definitely been some hard times. But the new portrait, it shows a
family of adults that can overcome anything, that are still standing all together and holding YD’s hands so she stays in place.

Family portraits show more then who is in your family, they show who your family, as a whole, are together.

It’s not my holiday

The holiday I am going on next week is a very important one.  It has been two years since we first came up with the plan and because of treatments and other time constraints we couldn’t do it until now.  I have pushed my oncologists to allow me to take this trip but it is not ‘my’ holiday.  It is YD’s.  She wanted to go to Dreamworld and she wanted Mummy to be the one that took her.  Because of her autistic tendencies , as far as she was concerned it wasnt going to happen unless Mummy was coming with her.  So we have made it happen,  OH and MD are coming to do a lot of the actual looking after her at the theme parks(Dreamworld, Seaworld and Australia Zoo – MD will go on a lot of the rides with her) because I know I will just not be able to keep up with her.

With the amount of fatigue I am feeling I am worried about how fast, or not, it will wear off on my week off xeloda.  People have been advising me I can hire wheelchairs and/or mobility scooters.  I really dont want to go down that route but I might have to – I really hate that thought!!  I will push myself because this is such an important holiday for YD but I am concerned about how I will handle it.

The  things I want to do for myself on this holiday are meet up with P another IBC lady,  see my sister and niece and meet up with old family friends who used to live down the road from us.  I also hope to have a few minutes each day to myself to swim in the apartments indoor heated pool to get my exercise/fitness back up.  With the issues with the xeloda side effects on my feet there are not a lot of other exercise options.  I also want to spend a few minutes each day alone on the beach where I can just sit and breath in and out.  I doubt the beach will be deserted but by alone I mean without anyone I know.  Hopefully OH and I will get a chance to do a few things by ourselves if we leave YD with MD but it is very dependant on YD’s behaviour.  She is so excited about this trip but I am so aware that that excitement can turn, very easily,  to over-stimulation,  and overwhelm her.

This holiday is going to be hard work for the rest of us, but if we can pull it off and give YD the holiday of  a lifetime it will be worth it.