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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

WELCOME

Hi and welcome to Get Out Gertrude – this is my main page and as such will have all my posts on any subject. If you are looking for posts I have posted in specific catergories  you can click the menu above the header picture – for example if you are looking for stories purely to do with Inflammatory Breast Cancer click on that heading – or want to read about trips/ travel click that heading.  My twitterstream to the right will both contain mini blogs in between my larger posts but also give you an insight into some of the other things I am interested in.  Medical info on inflammatory breast cancer can be found in the links to the side of this page and so on.  Thanks for stopping by!!

“She turned out the light and closed the door…”

“…And that’s all there is. There isn’t any more. “

When thinking about how I wanted to start this, the last post on Get Out Gertrude, the thing that kept jumping into my mind was one of my favourite stories when I was young, Madeleine. At the end, the narrator says the line above as Miss Clavel says good night to the girls and it was one of the first lines of the story I knew off by heart.

Knowing that Mum and I share the same faith I think has helped a lot on this journey – I know that even though she isn’t here right now (and believe me, that sucks big time sometimes), her passing away was less of a goodbye and more of a “See You Later”. Two months have gone by now and we have survived – we’ve even had our first family emergency (MD fractured two vertebrae in her back – she is fine but needs to wear a brace for a couple of weeks until the bone knits back together) and we supported each other and got through it. As a lovely girl I met at a baking class told me, having lost her father ten years ago, “It’s always going to suck, but it will get less painful”.

Mum left a legacy that is huge. The information on this blog is so useful to people that find themselves in similar places with cancer diagnoses – whether it be IBC or metastatic breast cancer. I hope to fulfill her dream of editing the content into a book and ensuring that all this useful information endures. Mum was super-organised (like mother, like daughter) and in her will, entrusted me with the legal rights to her intellectual property, including this blog. On that note, if any other bloggers or organisations would like to use information, posts or pictures incorporated in this blog, please contact me via email here.

I appreciate that for some of you, this is the end of the line – you loved Mum and you read her story because her cancer diagnoses and the information that she shared helped you through your own dark times. Please know that you meant the world to her – she loved the fact that she was helping others. Some of you may have been reading because you knew her as a friend and you were interested in the family aspect of her blog. You may be interested to keep following what is going on with our family through my blog, but please don’t feel obligated to do so. Whatever brought you here, thank you so much for your support over the years and, in particular, the last few months. Your words of love from around the world have meant so much.

This is OD, turning off the lights and closing the door.

“Cause I’ve had the time of my life…” – a celebration of Mum’s schooling era

As you will know, if you’ve been reading for a while, three years ago Mum started a Bachelor of Social Work with the University of Auckland. She always knew that there would be a solid chance that she would not finish it – studies show a 25-50% survival rate (and that’s survival, not cure) after diagnosis of IBC. As it turns out, we held her funeral on her fourth cancerversary (did not realise that until I was typing this) and at that stage she was just a few credits short of being able to gain her diploma. Sad, yes, but I know that Mum would not have traded that time for anything in the world.

Her close friends A, N and M from the course, along with her lecturer J and others campaigned to  give her some recognition for what she had managed to achieve in her course. And achieve she did – this is a woman who, during active treatment, was regularly gaining As and A+s. This is the woman who would have liked to gain a PhD and lecture herself. As it got to the end of last semester, however, she knew that she wouldn’t return. So on Wednesday the 27th of July (the week before she passed), Mum had her own little graduation of sorts, where she was declared “QBE” or qualified by experience. She wrote a short post on how much her “Mixed Nuts” classmates had meant to her here.

What I don’t know whether people realise is exactly how much it meant to her. She had photos and film of the event and on Monday the 30th, my first “task” of the day was to sit down and watch them. She was so proud of what she had achieved and really overwhelmed and humbled by all the beautiful things that people had said. We discussed how it is possible for anyone to graduate, and walk across the stage with hundreds of others, but it takes being pretty special for people to throw a “graduation” of your very own. We talked about how much she must have meant to everyone to have a certificate signed by every one of her lecturers.  Why wouldn’t you be proud?

Mum had two goals once her cancer had made it to the “control, not cure” phase: make it to my (OD’s) wedding and make it to her fiftieth birthday. The night before she died, she said that she was satisfied. The uni celebration and the visits she had had from friends had made her feel so loved and appreciated that she didn’t need the big event, especially if she had to plan it to happen in advance of the actual date. As she put it “You don’t usually get to hear the nice things people say about you before your funeral”.

She’d planned to post this second post last week – showing her certificate with blanks on it to protect the privacy of her lecturers. It is the least I can do to post this here and honour that wish.

We are so proud of you Mum.

Look at the stars, look how they shine for you…

OD here again. Driving home from Dad/OH’s tonight, the sun was setting and the sky was filled with gold and pink. It was another spectacular moment in the sky, one of many in a week that was meant to be awful and dark and revolting. Mum always said that grey days only made one feel worse, and in the middle of winter, those days here have been very few. Coincidence? Maybe. But that golden light tonight made me think that it was time to write one of two posts that Mum wanted to write. This one is on faith.

Mum’s history with the Christian Church is strong. Her mother was very religious and a large amount of socialising in Mum’s rural town upbringing was church-related. Mum attended the local youth group and even taught some Sunday School. Her and my father were married in the local church and all three of us kids were also christened there. 

Moving away from the town meant moving to different churches and the fit was not so good. My father is agnostic and has never attended regularly. My disabled younger sister came along and Mum was made to feel bad that she was not attending church regularly, yet also made to feel that YD was disruptive and unwelcome. In what is possibly the most horrid example of “church-i-anity” that I have heard of, Mum’s pleas for help in some sins that she was struggling with were met with the comments that YD’s disabilities might be God’s punishment for the things Mum did wrong. Just writing that makes me sick. YD is one of God’s creatures too and I can’t believe how cruel people can be.

Mum left the church and never went back. A couple of weeks ago, she got a letter from a family friend known as Mrs Five-Minutes – the one that Grandma was always on the phone to for “just five more minutes”. Mrs FM knew that Mum no longer attended the church of her youth and was worried that Mum had lost faith. Mum has always had faith in God, even when she has not had faith in people.

It was something that Mum wanted to write a blog post on – that her belief in Science and her belief in a higher power were not mutually exclusive. The reason that she was not afraid to die – and we both agreed that not being scared didn’t mean that it didn’t suck – was because she was a firm believer in that this life was not all there was. She didn’t know exactly what it would be like but she knew that Heaven would be love and being with God and that Hell would be not getting to be a part of that.

She’d thought about attending a church again but didn’t want to be perceived as a “rainy-day Christian” and was getting to the point that she didn’t want to be explaining her history to a bunch of new people, didn’t want to be known to a whole new bunch of people as “Jenny, the cancer patient”. She knew that you didn’t just get into Heaven by good works (although we discussed that those would have given her plenty of brownie points) but she knew that she was strong enough in faith that she would get to be part of that love.

What do I believe? I believe that at that point, so soon before she passed, when she told us that she had to go, that  door to the hereafter was opening. She seemed so at peace with heading into the light. I like to think that our family friend Keith and Mum’s dear IBC friend Susan were waiting on the other side to welcome her with the joy that she deserved. I believe that she’ll never truly be gone.

“We tasted all we could” – RIP Jenny Williams, author of Get Out Gertrude

Jenny Williams, beloved wife, mother, friend (and one hell of  a cancer fighter) passed away on Tuesday evening, 11pm NZT. Her deterioration was quick – she was not ill more than 24 hours and, in essence, most of her decline was in the last six . It was vastly quicker than any of us had expected (including Jenny) but she knew she had to go.

Part of Mum’s campaign, in writing Get Out Gertrude, was to present an honest and truthful look at what inflammatory and metastatic breast cancer looks like, so in this post I’m going to be honest and truthful about what those last few hours were like. If this is something that you will struggle with (or perhaps don’t want to burst into tears at work), please stop reading after the quote. I’ll end this section with a laugh – on Monday Mum was telling me that in this blog post I shouldn’t say that she “lost” her battle with cancer – she says that she is finally going to win, and just perish from her battlefield injuries!

Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.
– Louis Erdrich, The Painted Drum; via A Happy Adventure

Mum had the best last week ever – she was awarded a recognition of achievement in the Bachelor of Social Work course she was completing (an additional blog post coming on that later); she finally got to meet a close Twitter friend on Friday and had great South American food with Sis S and Niece S; we had a fabulous family lunch at Elliott Stables on Saturday, in which she was able to make solid inroads into both her meals, something a little rarer lately; she was able to see C off at the airport on Sunday morning and spent a lovely afternoon with friends at home on Sunday afternoon.

Mondays were the days that her and I (OD) spent together and we had a great day! We ended up running a lot of errands that day – she had said that one of the most annoying things about needing the wheelchair was that it required someone to actually take her out of the house. We went and spoke with her florist friends about her funeral flowers and what she would like and stayed for probably an hour and a half just chatting about everything. We went to the picture framers and on the way she was trying to direct me how to drive (I grew up in the town that she and my dad live in – so I knew where I was going) and we had a big laugh about it. At the picture framers, Mum was still healthy enough to walk in (10 metres) although she needed a stool to rest on when we were inside. Mum’s artistic side meant that we were there for at least a good twenty minutes – she wanted these framed photos for YD to be perfect. A part of me does wonder whether she had at least some sort of subconscious idea of what was to come.

We went to the lawyers and paid an invoice – once again, Mum still feeling like she could walk the 10 metres or so to the entry of the offices. Then it was off again to Mum’s favourite local cafe for lunch where she ordered wedges and a ginger beer; finishing the ginger beer and half the wedges which was again a great effort compared to some of her previous eating. We walked through Farmers and she pointed out a baby t-shirt that she liked, but of course we thought we had more time to look at things like that (one of my bucket list things with Mum was to shop for baby clothes together as she wasn’t going to be around when we do have kids) – you better believe that yesterday I went back and bought that cute little baby shirt for my as-of-yet non-existant baby!

We went to the post office, we went to find a frame for her cerficate, we went and saw her friends at Lotto and the Chemist (owned by the same company and Mum used to work in the Lotto section). Mum had great chats with her friends and then we came home and she saw even more friends while I cooked a roast chicken. Despite eating a big (for her) lunch, Mum also had quite a bit of dinner. She was tired, but at that point so was I. It had been a long day. R (my husband) and I left, Mum went to bed.

In the night, Mum woke up with diahorrea and it became clear that one of her haemerhoids had burst and was bleeding quite a lot. In hindsight, this was probably the sign that things were changing but she’s had bad nights before. She woke up a second time and Dad stayed at home from work until Mum woke up in the morning. She was lethargic but otherwise fine. MD came home from school practicum early and helped Mum dress herself, but again she had had bad nights before and found these things difficult before, so we didn’t think too much of it. Because of the bleeding, MD, Mum’s Sis M and Sis F took Mum to the doctors, where he examined her and provided her with a barrier cream and no other medication. Mum was still coherent and able to move herself when being examined.

In the afternoon, YD came around with her carer, L. They were still able to carry on a conversation but Mum was very tired. As YD left, she told Mum that she “was very lucky to have her sisters her at this time” – out of the mouths of babes, right? Mum’s friend T made an impromptu visit and again, whilst tired, Mum was still coherent when T left at 5 pm.

It all went downhill very quickly from that point. Mum started to become less coherent, not realising that she was lapsing in consciousness in between periods of lucidity. I was called and blasted home the 40 kms from my parent-teacher interviews. When I arrived, Mum’s breathing was troubled and she kept on telling us that she was very tired. We tried to get her pain medication in her but she was finding it increasingly difficult to swallow and we could not move her without hurting her to get her to bed. The decision was made to call the hospice and they sent out nurses to check her out. Mum was aware that this was happening – in her lucid moments she was saying that she didn’t know whether it was the right time to go to hospice, how she was getting confused about things so maybe she should go to hospice, that we could see what she was like and if we thought it was right, it was right.

Two hospice nurses arrived and they diagnosed her as having some sort of systemic shock. She was cold in her extremities and she was clammy and they told us to call an ambulance. As the ambulance staff loaded her onto a stretcher, the hospice nurses took Dad (OH), MD and I aside and said that it would be highly likely that this was it, and that she would pass away tonight. From all accounts in the ambulance, she was still completely herself in her lucid moments, correcting Dad/OH when he was getting her medical history wrong.

MD and I jumped into the car and headed for the hospital, getting R, MD’s friend B, Sis M and Sis F on route to the hospital via phone. When we arrived, it was a very short time before Mum was moved into a monitoring room in the ED and the doctors and nurses that were to be with us for the rest of the evening arrived. The doctor said that given her current medical history, there was no point in poking her and prodding her with unneccessary tests. Their goal was just to make her comfortable for as long as she had left.

At this point , Mum started complaining of a lot of pain and was curling up on her side. The nurses quickly organised a line for morphine into her abdomen and gave her half a syringe. Mum was significantly more comfortable after this and was able to ease out onto her back. She was surrounded by most of the family as Sis F waited for R to arrive. During this time she just kept on repeating herself to us – you have to look after each other, you have to keep loving each other, you have to keep caring for each other. We were assuring her that we would and telling her that she could rest and let go, that this was the end. She said to us “Okay, I’ve gotta go, bye” and those were her last coherent words. Sis F came in to let me know that R had arrived and I went to tell him how serious things had got. In the intervening term, the nurse had come in to give her a muscle relaxant as her breathing had got very gaspy. We walked back into the cubical, told Mum “R’s here” and she took a big sigh. While she lived for a short time after that point, I think that in essence, everything that was Jenny at that point left the room. So typical of Mum that she felt like she couldn’t go until everyone important was there and everyone had someone there to support them.

The end came smoothly, with everyone she wanted around her. The doctor came to confirm death and was so respectful to Mum, still telling her what he was going to do to check her vital signs. The bereavement care person came and took us through the process of what was going to happen from here on out. The majority of the family was escorted through to the bereavement care room and Dad/OH and I stayed in the room, waiting for the orderlies to come and collect her. We laid the bed down flat and tucked mum in, staying and talking about her and to her.

Once we’d been moved though to bereavement care, they took Mum to make her comfortable in the viewing room. When we walked in, I was so happy to see her laid out with the beautiful purple blanket that her uni friends had bought for her in Whangamata. She was so excited about that blanket; she told me about it the minute I walked in the door of A’s bach. We spent a lot of time with her in the room, sharing stories of times gone by, having tears and having laughs. Leaving her at the hospital when Dad/OH and I had to head home at 2 am is one of the hardest things we’ve ever had to do.

It’s been a whole day now since that happened – it seems surreal that she is gone. She had two blog posts that she really wanted to write and I’m going to do my best to write them on her behalf. Thank you so much for being the wonderful, supportive community that you have been – I know that we’ll never manage to thank all of you but you have all meant SO much, not only to Mum but to our whole family.

To ‘Mixed Nuts’

“Mixed Nuts” is the facebook group we created for our year of the BSW degree

To my dear ‘Mixed Nuts’ family

You are all so diverse and I think mixed nuts was a great name for our group representing the unique ‘flavours’ we have all bought to the group

I just want you to know how much yesterday meant to me and I was so glad so many of you turned and said such lovely things about me… I felt so much love in that room.

my lovely gifts and cards

One thing I had wished I had said last night that I didn’t think about until I was talking to V at the end was  that you all indicated that you were all so amazed ‘that I had kept coming  to Uni with  everything else that was going on in my life’.

What you don’t realize is that it was for my own sanity.  I had my oldest daughter when I was 22 and had my youngest when I was 26.  When my youngest (YD) was born with a chromosome deletion my identity became first and foremost ‘YD’s Mum’.   When your child with a disability gets a label so do you… especially if you try to be assertive and get the services for your child that they need.  YD left home 8 months before I was first diagnosed with Inflammatory Breast Cancer, one of the rarest but the most aggressive forms of Breast Cancer so I went from YD’s ‘Mum’ to the new ‘Label’ of ‘ A Cancer Patient’ in very quick succession.  University has been the first time in many years where I have been Jenny, a university student and recognised as myself rather than ‘the Mum’ or ‘ the patient’ and that has saved my sanity in this journey I have been taking.  Thank you all for seeing me as Jenny first and foremost, even though those other labels were still there they were not the most prominent one.

Thank you again for showing the love and being my family the past 2-3 years.  Go well and I am sure you are all going to be absolutely amazing Social Workers

Love to you all

Jenny

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’.

Terminal velocity

Dictionary definition of ‘terminal velocity’

noun

1.

Physics .

a.  the velocity at which a falling body moves through a medium, as air, when the force of resistance of the medium is equal in magnitude and opposite in direction to the force of gravity.
b.  the maximum velocity of a body falling through a viscous fluid.
2.

Rocketry, Ballistics .

a.  the greatest speed that a rocket, missile, etc., attains after burnout or after leaving the barrel of a gun.
b.  the speed of a missile or projectile on impact with its target.

Not quite the meaning of the heading above – unfortunately my definition of the title is something quite different.  It is how fast I have gone from being on chemo to how fast the cancer has taken off when I went off it.  in other words the ‘velocity’ at which I have become a ‘terminal’ cancer patient
When I made the decision to stop chemo 6 weeks ago all of us including my oncologist Dr H had an expectation that I would have a couple of good months before the cancer really started ramping up again  … how wrong we all were.  My blood tests of 6 weeks ago showed my CA 15-3 tumour markers had fallen to 174 and my liver function (GGT) was a good steady 117
I went away two weeks ago on a trip to the beach town of Whangamata (was going to do a pictorial blog post of the great time we had but thought I need to update you on this news first ) with my friends from uni (OH joined us later in the weekend) and realised then how much my appetite had dropped and also that I couldn’t stand in one place for more than a moment without getting quite dizzy and woozy.  I also had two bouts of unexplained nausea - one on the Sunday morning after which I slept for 3 hours and one on Monday evening heading home with OH.  The bouts of nausea and wooziness then became more regular and my appetite dropped right off so I knew something was going on, but nothing really expected me for the news that I got on Wednesday.
When I told Dr H at my oncology assessment the symptoms that I had been experiencing and then him doing a physical exam of my abdomen coupled with my blood test results the evidence was irrefutable. The liver just on physical examination was significantly larger than it had been  6 weeks earlier and it was the cause of all my issues – it was large enough to be pressing on my stomach restricting how much it could hold and the reason I was feeling so dizzy/woozy when standing was that it was actually pressing on my femoral veins so that my blood wasnt able to circulate properly and my brain wasnt getting enough blood flow.
Then he divulged the results of my blood test CA15-3 had jumped from 174 to 2060 and GGT had jumped from 117 to 1165 which meant my liver was no longer able to cope with the tumor load without affecting its function – that is my liver function was starting to be impaired and will ultimately fail .  When I asked him a time frame, while I had prepared myself for the fact when my liver started to fail I would have very little time I wasnt expecting his answer.  He hesitated and said worse case scenario 3-4 …weeks (!!!?@@ was appearing in my brain at this point) best case scenario 3-4 months – in all likelihood somewhere in the middle of those points but if I got ill at all it would be looking more at worst case scenario because at this stage my liver can’t handle me getting a cold on top of the tumor load.
He put me on steroids to try to take down some of the inflammation that the enlarged liver has caused to surrounding organs, He said I would be due to have a follow-up visit with him in 6 weeks but I would now go under the doctors at hospice for more routine symptom management.  He is not sure I will be well enough to travel to the appointment in 6 weeks but he will schedule it in the hope that I can.  Before I had my assessment they had been scheduling me for an MRI just to see the state of play and I had just received the appointment for that but Dr H said given my symptoms and the blood test results the MRI wasnt going to tell us anything we didn’t already know and that it was a waste of a day that I could be spending doing something more important or enjoyable.
One good note I can say about velocity at this point is having already been in touch with the hospice and being registered with them and they know what my needs might be when I rang them yesterday morning (Thursday, the day after the oncology appt) the hospice nurse came out and visited me later that morning and today (Friday) I was delivered a shower chair, an electronic lazy boy and a wheelchair. The shower means I can sit while showering thus not getting dizzy/woozy standing in the shower. The electronic lazy boy means I can sit/lie with my abdomen not scrunched up therefore allowing me to eat easier and as time goes on, if I get weaker it also has a function of helping me stand up.  And the wheel chair means I can still get out and about on fine days.

wheelchair

shower chair

electronic lazyboy

The family is all in a bit of a state of shock but because we have already talked about a lot of things and half-planned out some of the eventualities now it is just a matter of putting what we need want in place.

The hardest thing is to let go of my independence from now on. I can’t drive myself anywhere or do anything by myself and I need to have people to help me – the family is rallying around and I am trying to schedule others who want to help around them.  This is the time when I do need to accept the help that people want to give.
There will be some follow-up posts to this one to clarify but I thought I better update you all as to what was happening.

Apart from the pants…

Apart from the ‘travelling pants’ what have I been up to these past 3 weeks since I wrote about the decision of stopping chemo.

I had my exam for the one paper I was doing this semester on the 18th June so some of the time was spent studying for that.  Although to be totally honest I struggled to find the motivation.  I had a bad cold the week before the exam and I struggled to study because of that but also it was a slight case of the ‘why bothers’ - I couldnt help thinking to myself what was the point of studying for an exam when I was not intending to carry on with the course and there was very little hope of me graduating.  OH even asked me why I was bothering with sitting the exam…. but it came down to the fact I had committed myself to this semester … regardless of whether I was carrying on or not I had to prove to myself that I could finish what I had started and pass this paper at least.

Once the exam was over I started to unwind.  At my last oncology appointment Dr H had added yet another painkiller to the mix – something that would work on the pain in my fingers and toes.  Amtriptylene is also a antidepressant, not that I need it for that, but also acts as somewhat of a sleeping pill.  So I have been sleeeping a lot somedays – a solid 10-12 hours sleep at night and then sometimes still an afternoon nap of2-3 hours.  But I am just listening to my body and sleeping if it says to sleep.  I’m making up for all the time the pain (corrrect medical term paraethesia) kept me awake at night.

I have not been totally lazy however.  I volunteered to go down to Rotorua last weekend to man a display for Breast Cancer Aotearoa Coalition at an event that was part of the inaugaral mid-winter festival.  (The organiser of an “Undies Splash and Dash” were to split the proceeds between our group and the Prostate Foundation.  There wasnt a huge number of entries for this the first event but they have high hopes for next year).  As I don’t trust myself to drive that far, I organised for Gary to come with me and for us to stay the night down there.  I tthought it would give us a chance to have a little bit of a weekend away.

Me andthe ‘leader of the undies pack’ beside the BCAC display

We meandered around Government Gardens on the Sunday morning, had a soak in the private hot pools at Polynesian Spa and drove out to see the Blue and Green Lakes and Lake Tarawera.

At Lake Rotorua

The view from our private hot pool at Polynesian Spa

Blue Lake

Lake Tarawera with Mount Tarawera in the background

SisM has also helped get me out and about.  She has an overabundance of annual leave to use up so is taking Fridays off at the moment so for the last two Fridays we have gone for short walks, first week was a walk around the Botanical Gardens after her taking me to get my port flushed at the local district nurses office, and a pleasant brunch at the Gardens cafe.  Then this week it was a walk around the coastline at Maraetai C came with us as she has also finished her exams.  It was a gorgeous day for the middle of winter

one of the little hidden coves on the way

The view at Te Pene Beach -as far as we went on the walkway from Maraetai

And of course there was the obligatory cafe stop when we got back to Maraetai.

This next week my wonderful Uni friend AW has organised for us to go away to a bach at Whangamata.  It will be myself, AW, MH and NU-B (my best uni friends) for Thursday and Friday nights and then OH and possibly some of the rest of the family may come down for the Saturday and Sunday nights.  I am really looking forward to it – I am hoping the weather is good for it.  but we are quite happy to curl up with books etc if it isn’t

My hair, my taste,  appetite, and energy are returning slowly, my fingers are responding to the amitriptylene and are calming down a little so I am definitely feeling a little more like my normal self, I have been off chemo  for a month now and I am hoping in another months time things will have recovered even more.

The Sisterhood of the Travelling Pants

Most of us who are a certain age or had girls of a certain age will know of the book series and the movie ‘The Sisterhood of the Travelling Pants’.

So when I found a website called Stage 4 Travelling pants I was intrigued. Shannon took the inspiration from the original “travelling pants” and created a way to support her sister Stephanie who was diagnosed at the age of 30 with stage 4 (secondary/metastatic) breast cancer.  Through different forums they had made contact with other young women with Stage 4 breast cancer and Shannon came up with the idea of creating a tangible link between these women spread accross the United States.   Using an old pair of Stephanie’s jeans she sent them out for the other women to autograph and decorate. I left a comment that I thought it was a great idea and what a pity they couldn’t come to New Zealand.  I only just fit the criteria as they are targetting under 50 year olds – women in their 20s, 30s and 40s.  After conversing with Shannon via email we sorted out that we could get them here

the front of the jeans

the back of the jeans

They also travel with cards and letters from the other signees so between the pants and the messages it is a very tangible link to fellow stage 4 sisters.

messages from the other signees of the pants

They arrived the week of ODs wedding so I didnt have much of a chance to do anything with them until after those activities and also study etc for my exam on the 18th June happened.

After my exam though I had the opportunity of taking them to our mid-winter Sweet Louise meeting and got my fellow younger Sweet Loiuse members to sign them.  I was invited to get up in front of the meeting and give a little talk about how they had come to be in New Zealand and  3 of them as well as me signed and I decorated the jeans with an adhesive paua outline of New Zealand and the Sweet Louise phone tag.

the pants with the Sweet Louise tag and NZ in paua

A couple of days after this I had arranged to meet up with my chemo buddy J who I had mentioned in this post.  She had been on 3 weekly chemo and I had been on weekly but every 3 weeks we would try and catch up with each other.  We had intended to catch up at a shopping mall but instead I visited her in the oncology ward (ward 64) that I had spent so much time in with my infections.  I thought while I had made plans to jump on the train and go to the shopping mall to see her I may as well take the train that little bit further and visit her in the hospital.  I took the pants in with me and she autographed them and was really glad to be part of it and it took her mind off the fact that she was in hospital and not spending time with her husband and kids.

I think these pants are a very tangible way of being connected to other women all around the world – if you are a Stage 4 BC woman reading this who is under 50 and want to be added to the travels of these pants get hold of Shannon at the website http://stage4travelingpants.com/ and see if they can visit you.

I still have to catch up with another couple of younger stage 4 women I know and get their imprint on the pants and then I will post them on, not back to the States but to Wales, UK to a woman there.  I will send them with notes from myself and others here and also a copy of the Sweet Louise  ‘Oysters for Lunch’ book.  These pants are truly becoming international travelling pants..

Decison time

Decisions…Decisions…Decisions….

These last few weeks as well as being involved in ODs wedding, I have been thinking long and hard as to ‘where to from here’.  Decisions have been made and discussed with the family.

On Wednesday I met with Dr H and told him of one of my decision.  That I wanted to stop chemo.  The peripheral neuropathy (nerve damage) was becoming debilitating and very painful. As I explained to someone it is like when you have had really cold hands – on the verge of frostbite when your circulation has stopped – and then as you warm your hands up and the circulation kicks in they become excruciatingly painful  - that’s what my fingers feels like all the time.

He wasn’t that surprised and was supportive of my decision.  As we had already discussed with the registrars the two visits prior, the neuropathy was going to be one of the deciding factors in whether I stayed on it.  At most I was going to have 6 cycles, another 6 weeks as I’ve had 4 cycles already, of Taxol.  He said he thought the Taxol had had some effect on the cancer as evidenced by my tumor markers dropping but he really didn’t think staying on it for another 6 weeks was really going to change the amount of control, and how that was going to play out in the long term.  My tumour marker had fallen again to 174.  He is hopeful that it will fall again in the next month or so while the chemo is still in my system.  He agreed that now it is more about quality of life.  As I said to SisM if he had tried to convince me to stay on the chemo I may have been swayed by his arguments as I trust his judgement a great deal where my treatment is concerned. The fact that he didn’t try and dissuade me at all reassures me that I am making the right decision, for me, at this time.

I know some people may view this decision as me giving up hope but it is not. It is me taking control of how I want to life the rest of my life.  It is about me having some really good quality of life before the tumours grow and impact too much on my liver function.  Being on Taxol has just made me feel tired and ‘crap’( slightly nauseous, off my food, and just generally blah) as well as the pain from my fingers all the time and I need to reclaim some normality.  Although it will be a few weeks until the chemo is totally out of my system, I am starting to feel better already.  I’m still tired but I don’t feel as ‘crap’ as I did.  It’s about feeling up to doing activities with family and friends and enjoying my life a little more than I have been.

The other big decision I have made is that I will not go back to university next semester.  As much as I love it I want to put my energy into some other things.  With this last semester all my energy has been used up by Uni, and chemo, with very little left for anything else.  Even though I have only been doing one paper the travelling time on the train, having to catch a 7.15am train in the mornings and spend an hour and a half travelling each way including bus and walk has worn me out.  Hopefully with being off chemo and without Uni I will be able to prioritise some of the other things on my ‘to-do-list’ and get them done.

Depending on what happens – in the unlikely event my cancer stabilises, I can always revisit this decision later on.  But for now, knowing that Taxol was the last chemo to try and that ‘Gertrude’ will probably eventually take over,  I am going to get back to enjoying my life without it being ruled by chemo, blood tests and uni each week and be able to wake up in the morning and say what do I WANT to do today.

I might even have more time and energy to write blog posts and let you know what I am up to.

Family

This last week cancer took a back seat and chemo took a holiday.

It was time to focus on family

It was time for a wedding.

OD and R got married.

I was Mother of the Bride and did a bible reading as part of the service.

doing the bible reading

I was tired but extremely happy.

Yesterday we spent a bit more time with family and friends at a day-after-wedding afternoon tea.

A great time was had by all

Getting on my nerves

This chemo (Taxol) is literally getting on my nerves.

One of the major side-effects of chemotherapy treatment with Taxanes –  Taxol (Paclitaxel) or Taxotere (Docitaxel)  – is that as well as hair loss, nausea and all the other usual side effects you hear about,  they cause peripheral neuropathy which is that they damage the nerves in your extremities such as your fingers, feet and toes.

It builds up gradually and at first you dont notice it other than the occasional little tingly feeling in your fingers or toes.

How much peripheral neuropathy I get will be one of the deciding factors on how long I stay on Taxol.

It has been getting worse over the last month and especially in the last couple of weeks.  I lie awake at night with a tingling burning feeling in my toes and the balls of my feet – its ‘tingly burning’ to the point of being painful.  I can feel it in my fingers as I type these blog posts with each key stroke feeling simutaneously slightly numb and slightly more painful.

Holding a pen to make notes at uni on Tuesday was another time when I realised it was getting worse, and it made me wonder how well I am going to be able to write in my upcoming exam (middle of June), as well as having quite a lot of work on an assignment to type up in the next week.

I struggled to do buttons up on OH’s work shirts after I washed them – I dont tend to wear things with a lot of buttons myself –  thank goodness.

What it comes down to is whether I am getting enough benefit from the Taxol versus the quality of life while I am on it.

My next oncologist assessment appointment will be the first week of June, and I know it is going to come up for discussion then.  Ordinarily my next appointment would be on the 30th May but because of OD’s wedding on the 1st of June we have delayed the oncologist appointment and taken that week off chemo as well so we can concentrate on the wedding and family.

 

In case of emergency

While I have been in treatment for  the last 4 years I have carried a business card holder in my purse with all the hospital contact cards such as this one

card for getting hold of Acute Oncology when I feel sick while on chemo

as well as the contacts for the appointment scheduler, my oncologist, my nurse specialist, my cancer society liason nurse…etc…etc…etc

On Tuesday I had an appointment for counselling at the Cancer Society in the afternoon after attending my uni class in the morning.  I had taken the train up to uni and AW dropped me in Newmarket on her way home after we had attended class and had lunch, so that I could kill time until my appointment at 2pm.  I decided I would be ‘good’ and not  tire myself out by wandering around the shops too much before catching the bus for the short trip to my appointment so I bought a magazine and went to the mall foodcourt and ordered a ‘Tank’ Juice and sat and read at one of the tables.  As I sat there I started having one of my ‘cold & clammy’ dizzy spells.   Dr H says they are caused by the large tumour in my liver -according to him as it has got bigger the inside of the tumour has started being starved of blood supply and has started to break down and every so often it releases the toxins from this cell breakdown into my blood stream which causes the ‘cold clammy spells’

Now usually when I have them when I am sittting down they pass very quickly and I feel capable, even if still feeling a little off colour, of doing what I need to do.  Tuesday was not like that…  As I sat there over a period of quite a few minutes the dizziness got worse and even putting my head down on the table did not remedy the situation.  I had to end up asking the man sitting a couple of tables away from me to go and get someone to help me.  He got one of the foodcourt cleaners to get hold of the centre management who come to help.  I was lucky I was still coherent enough to tell them I didn’t need to go to the hospital I just needed to lie down and help them find OH’s number on my cell phone so they could ring him.  He had to leave work and come and pick me up.  The centre staff were very kind and took me to the management offices where I lay down until OH came.

Quite frankly this episode scared the h*** out of me.  I realised that I needed to have something on me that people could read and understand the situation if I passed out and couldn’t tell them anything.  My solution?  to put a bright sticker on my card holder so that as soon as someone looks in my purse they would be able to get the information to be able to help me.  I composed a card to add to the others explaining what to do in case of emergency and what was wrong with me and added it to the front of the holder.  I know the time is coming when I won’t be able to go out on my own if I continue to get sicker but this at least helps in this interim stage.

the sticker on my ‘cancer card holder’

 

MD was angry at me for not going to the hospital to get checked out but I knew that there was notheing else they could have done for me other than let me lie on a bed until the dizziness passed.  I checked with doctors on Thursday when I went in for chemo whether I should have gone into the hospital and they said probably not but to ring them the next time it happens.  They also checked me out including some motor skills assessment to check that it wasnt anything more sinister.

The one thing they did find that was different from normal was my blood pressure was a lot more elevated than normal and they are wondering whether that contributed to Tuesday’s episode.  I have had to go to the GP’s on Friday and Saturday to get it checked to see if it remains elevated or whether it is falling back to more normal levels. So far it is remaining elevated.  This shouldnt be a chemo or other medication side effect but if it remains high it will need to be investigated and controlled.

Mixed results

At my oncologist assessment appointment on the 8th of May to get my latest scan results – I burst into tears.  Why – because of bad news? No, because there was no official scan report from the radiologists.  When you have psyched yourself up to deal with results, good or bad, getting no results is actually worse because you are left in a state of suspended anticipation, ‘ not knowing’ the ‘what ifs’ crowding your mind, which as I have said many times before, does my head in far more than knowing facts and figures even if the facts reveal bad news.

The Radiology department of Middlemore hospital  ( the local hospital where I have to have my CT scans vs Auckland Hospital where I receive my cancer treatment) has some major issues around scheduling and reporting.  While I can’t fault the technicians and nurses that actually facilitate the scans, I have always had issues getting the scans scheduled within the timeframes that my oncologist wants them and we have always had to wait longer than necessary for the official radiologist report.  I do not think this is good enough when you are talking about people’s health.

To make it worse, at my oncology appointment I saw a new registrar Dr KN who didn’t know me at all and so could only go on what she had quickly read in my notes.  It was a slightly weird consultation as we were discussing what options I had around continuing chemo without knowing what the scan results would ultimately show. She promised to ring me as soon as the scan report came through and let me know as well as posting a printout of the results out to me.

I got the phone call the next day.  My larger tumour in segment 7 of my liver has now grown to be 9.4 cm x 7.1 cm up from 6.7 x 5.2 in my February scan.

the outer pink ring is growth since February scan

Dr KN then went on to talk about the other tumour they had measured which now measured 1.1 cm.  I think I surprised her by asking her what segment it was in.  My second tumour, in segment 2, had been measuring 2.5 cm so I thought she was saying it had shrunk.  But no… this is a  third, new, tumour in segment 6.  She went on to say that they had not been able to get an accurate measurement of the segment 2 tumour.

I decided not to do a blog post about this until I got the written report so I knew exactly what they said, and I also wanted to get my head around what the results might mean, which is part of the reason this blog post hasn’t been written before now.

I got the printout a couple of days after that.  as well as the measurements I have reported above, it says that segment 2 is ‘difficult to define due to perfusional change in the left hepatic lobe’ ( meaning the way blood etc is flowing through that part of my liver is partially obscuring the definitive boundaries on that tumour) they also say ‘ there are other small foci which are indeterminate for liver metastases or focal fatty sparing’  – this means because I have got fatty infiltration of my liver that until tumours grow to be about 0.5- 1 cm it is hard to differentiate them from fatty globules.  What this means is at the moment we know that I have 3 definite tumours but possibly quite a few more. We wont know until they start growing a bit more.  We actually don’t know for certain where or how many ‘spawn of Gertrude’ there are

To put these measurements in perspective I investigated what an average liver’s dimensions were,  – me being my usual investigative ‘facts and figures self’.  I know my liver is slightly enlarged and that also my larger tumour is pushing out of my liver by a good couple of centimeters at the least so all of its dimension isn’t taking over within the liver itself but the average adult liver is 20-23 cm transversely and 15-17 vertically and 10-12 front to back. So especially the largest tumour is fairly significant in relation to the size of the liver as a whole.

That’s the bad news… the good news is that my tumour markers continue to fall, from 557 to 249  which reassures me there aren’t quite so many cancer cells circulating in my blood looking to ‘set up home’ elsewhere and my liver function tests remain stable.

What does this mean for carrying on treatment.  I will discuss more in a following blog post some other factors that have come into play but in the discussion on the 8th and subsequent phone discussion with Dr KN we decided to carry on for at least this cycle and hopefully another couple and then scan again. as we don’t know how much of that growth between the scans on the 1st February and 2nd May happened in the month I was off chemo in February and how much has grown while I’ve been on the Taxol.  At most the Taxol is keeping it stable, it isn’t shrinking it at all.

 

Pacing myself

Later today I get my scan results as to whether this chemo is working so will do another blog post tomorrow to catch you up on the results but I thought I had better do a blog post to catch you up on the last couple of weeks.

The cold I mentioned that I had in the previous blog post came back in full force after my subsequent chemo and I ended up going on antibiotics to get rid of it.  I missed my university class that week and generally felt miserable.  My eyes are reacting badly to this chemo – harder to focusand I  need my glasses on to see anything at all and with the cold I found I couldn’t read or see much of anything which made for a very boring week.  I even struggled to play facebook games as the screen would go blurry…and you know how much I rely on facebook games to keep myself sane.

I have only just got back on top of my health, coldwise, this last week and have been trying to catch up on things.

But I have had to pace myself.  If you know me in real life you will know I walk very fast, and I find it hard to convince people that I’m sick when my normal walking pace is still 4 kms/hr.  OH notices I walk a lot slower and so do my daughters but many of my friends dont pick it.  I still have to walk at a fast pace as when I dont I actually get pain in my hip from walking slower as my hips and body are used to a certain pace.  I just cant walk as far.  I also cant walk up stairs, ramps or hills easily and feel very breathless.   I sometimes forget that I need to sit and rest frequently and when that happens I have a dizzy spell such as I did last Tuesday after class when I went to lunch and a  little wander round the shops with AW and MH.  I suddenly went all cold and clammy and they had to take care of me – with AW not prepared to put me on the train home so drove me home (completely out of her way by direction and distance)  Thanks AW.

I actually got very upset later that night because that episode  brought home to me just how dependent I am on others.  I have always been an independent sort of woman capable of doing things my own way and in my own time.  I no longer drive myself much further than our local town and feel frustrated by the limitations chemo and cancer put on me for doing things on my own.  And unless I get my spontaneous miraculous remission it will only get worse.  I find it really hard to ask for help and feel guilty for accepting it because thats just the sort of person I am, and I am angry that cancer is taking my independence away from me.

I have to figure out new ways of doing things so I can keep on doing the things I love for as long as I can, and maintain as much independence as I can without jeopardising my health.  I am grateful to my family and friends for ‘keeping an eye on me’ - Such as yesterday when I went shopping with MD – she had to head to her part-time job so I was catching the train home, but I was feeling a little tired and sore so unbeknownst to me she had rung her father to get him to check that I had got home safely.  It feels weird to me that they have to do that but I am grateful for it at the same time.

I will continue to learn how to pace myself , OD’s wedding is fast approaching and I am doing a few little jobs for that, I have an assignment due for university just before the wedding and I am also working on a couple of other projects that are important to me.  I will get them all done as long as I pace myself and allow myself time to rest as well.

As one of the old ads on TV used to say ” dont worry I AM looking after myself”