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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

“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.

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..

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”

Hair

A whole update dedicated to my hair or lack of it

I was very lucky that when I was on treatment for loco-regional recurrence in 2010 that the vinorelbine allowed me to keep my hair. and again when I first started treatment for liver metastases the xeloda was also a non hair-removing chemo.  This allowed me to look normal and not like ‘a cancer patient’ and I loved that.

However that all changed when the xeloda stopped working and I went onto Adriamycin

patchy hair after 2 cycles (6 weeks) of Adriamycin

 

By the end of the 2 months I spent on Adriamycin my hair was even sparser and we didn’t realise just how sparse it was until it started re-growing on my month off Chemo in February

regrowth and in need of a haircut LOL

 

I had a haircut last week when it was obvious the Taxol was repeating the Adriamycin patter and my hair was getting  patchy again – I like taking it down to a no. 1 buzz-cut, it looks tidy and the patchy spots aren’t so obvious

my hair today

A handy tip for those of you who are going through this at the moment – when you head gets to that itchy stage where hair is starting to fall out I have found it a really good idea to run a lint remover over my head – it picks up all the loose hairs and stops that itchy feeling quite so much

handy (pet?) hair lint remover

Of course when I go out I usually resort to my hats and other head coverings which I love a variety of which are included in this blog post . I never bought a wig when I lost my hair the first time around in 2008 but this time especially with needing ‘official’ photos for OD’s wedding we decided to get one – the government subsidises the cost of most of it.

one of my favourite hats 🙂

 

one of my trendy turbans 🙂

 

another one of my favourite head coverings - lycra based and very comfy

 

and the wig - only used for very important occasions, looks good but is less comfortable than the rest

 

Family commitments

Hi all,

yes I know long time no blog post – part of that is the fact we have had lots of family stuff happening over the past couple of weeks and that combined with chemo sideeffects has left me too tired to do blog posts.

Easter was also YD’s 23 rd birthday so we had her home for 3 days/ 2 nights. On the Saturday we  shopped for new clothes (birthday present from us as it was the only thing she really needed) then went out to dinner at a mongolian BBQ restaurant where you pick and mix your meat, veges and sauces and then it gets cooked for you – YD loves the pick and mix part of it.

'mocktails' at restaurant

On Sunday OD took YD to church while I prepared clues for the Easter Egg hunt – family tradition for YD

one of the 17 clues...

 

Seeing Sunday was also YDs actual birthday – MD cooked her special pizzas for lunch and she opened her presents then OD, YD, C (our ‘French daughter’ ) and I went to the movies for the afternoon.

During Easter weekend OD also moved house she now lives in a nearby town approximately 20 km instead of in the same town as us.  So on the Monday YD and I went to see OD and R’s new house and explore the town,  which is the town I grew up in from the ages of 10-18, it has changed a lot. By the time YD went home on Monday night I was fairly worn out and spent the rest of the time before chemo on Thursday recuperating.

Last weekend was OD’s bridal shower (and hen’s night but I didnt attend that) – 5 weeks now to the wedding.  I have not been a very active ‘Mother of the Bride’ but was glad I was feeling well enough to enjoy this.

I have also been helping C with her uni assignments.  As English is her second language she sometimes needs help understanding what an assignment requires of her. and as a student of the University of Auckland myself I have been able to explain what they want and explain things like APA referencing and things like that which is not something she has had to use in getting her degree in France.  I also read over her assignments and make sure they are reading smoothly.  She writes well but sometime french syntax creeps in or she writes something that while technically correct is not the way we would write it in English so I just help her with that sort of thing.

My identity since my daughters were born and especially with being a ‘stay at home’ mum for so long , albeit with being very active in volunteer work, has been first and foremost ‘a mum’ and it has been something that I have stuggled with since diagnosis.  Even though the girls are grown there are times they have needed me and I have to weigh up how much I can do while still looking after myself through treatment.  I have had to work through feelings of guilt that I am not doing enough for any of them and knowing that I, or my condition, is  the cause of a lot of the stress in their lives pains me greatly but there is nothing I can do other than try and be the best mum I can be under the circumstances.

At the beginning of April I went to a creative writing workshop run by the hospice in conjunction with the ‘Whats on your plate’ exhibition being held at the Papakura Art gallery.  This was both a visual arts exhibition and an interactive written word exhibition with creative writing workshops being held with various community groups and pieces from each workshop being displayed as part of the exhibition.

This was the poem I wrote as part of the workshop and I have permission to put it on my blog

On my plate

The mixed vegetables of my children’s needs

Stir-fried together but each with their unique flavour

Adding to the mix

They need different seasonings

And none can overpower the other

How to spend the right amount of time cooking

So they will all come out crispy and delicious

Not limp and overdone

 

And how do they sit on the plate

Alongside the staple rice of my relationship with their father

The stew of my cancer treatment

And the garnish of my university studies

 

The different tastes and textures

Fit on my plate

My life is delicious

 

 ©Jenny Williams 2012

‘What on my plate’ creative writing workshop with Totara Hospice South Auckland in conjunction with ‘Whats on my plate’ Exhibition on at Papakura Art Gallery

A little rant

Just something that has been bugging me a little lately.  I have had the reaction from some people that because I am getting involved in hospice and I’m on morphine I am ‘giving up’.

They think I should hold on to hope that I am going to be cured and that to do anything else is being negative.

I dont believe ‘positive thoughts’ cure cancer. I do believe positive but realistic thoughts help you fight cancer by putting your body in a less stressed state, and depending on the aggressiveness, stage and biology of your cancer you will be able to at least knock it back and in a lot of cases achieve remission or cure.

I will have been dealing with ‘Gertrude’ for 4 years this coming August.  I honestly believe that if I was going to be cured of ‘Gertrude’ it would have happened by now.

We dont have the money or the time to try unproven and expensive alternative therapies and being a girl with a science background I need to have the things I try backed up by science.  We have chosen not to spend $5000 dollars amonth for tykerb which is not publically funded in New Zealand because there was no guarantee that it would work at this stage of the proceedings and if we were spending that sort of money we would have no life (we would have had to eat only the the most budget unhealthy foods, no trips to the beach to recharge my spiritual batteries etc, no uni studies, no helping to pay for OD’s wedding) it might have kept me alive  a little longer but would it be a life worth living?

I still hold out a small amount of hope for a spontaneous miraculous remission but also believe at this stage it would be exactly that – miraculous.

That does not mean I am giving up, if I was giving up I wouldn’t be trying taxol, I wouldnt be carrying on with my uni studies and staying active and involved in all the other things I can manage to do.

By getting involved with hospice, looking at funeral planning, to me is just a natural way of getting organised.  We need to have things in place especially around YD and I relax more myself knowing things are organised. It is all about lowering my stress levels and allowing myself to enjoy whatever time I have got left be it  6 months, 2 years or whatever.  I can make the plans, get organised then relax knowing they are already in place.

I have a friend that should be on morphine because the amount of pain she is in but she cant get passed that psychological barrier that it has around it .  I take less morphine than I could because I prefer to feel a little pain and be able to gauge when it is getting better and worse and not feel too doped out.  Taking the level I do allows me to function and live a reasonably normal life go to uni etc.  Compared to my friend that at one stage was in so much pain she admitted she couldnt think straight.

I think what really annoys me is that people buy into the rah-rah survior myth so much that whether you are a cancer patient or part of their support system, friends and family, there is a barrier to being realisitic.

Someone who said their friend with mets wasnt giving up and was going to fight it with everything they’ve got when I said about where I was – what do you think I have been doing for more than the last 3 and a half years .  Or someone who said  to my face ‘dont give up, you have got to believe the chemo will cure you. dont believe what the drs tell you.’  I’ve done my own research and I have also had friends with exactly the same thing as me, I know that at this stage it is not cure it is control.

By denying that I will probably die from this is not helpful to me, it is denying me the right to face my own reality and make peace with it the best way I know how.

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.

A break away

the mouth to Tutukaka harbour

The week before I started Chemo – we managed to get away again to one of my favourite places  for rest and relaxation.  What I love about this place is that where ever you are you have gorgeous views to look at

Even when I was having a nap upstairs I could look out and see the water

view from upstairs

or while I am having lunch

view from downstairs

 

and then when I have enough energy I can walk down the steps on the  harbour side of the motel  to this gorgeous beach

and have a little swim and snorkel 

Whats been happening?

The very top of the North Island of New Zealand - Cape Reinga

After my oncologist appointment last week I made the most of knowing that there was no chemo, for the next week or so at least, to go away for a few days to show C some of the sights of the Far North of New Zealand.

What did I learn at the oncologist appointment?  I was pleased to learn that although my tumour markers had increased a great deal in the last month or so there are no new tumours.  I have to admit that was one thing that had worried me that there were new tumours in my liver or that they had spread elsewhere.  So far, so good.

The main gist of the scan was the larger tumour had grown fairly significantly since the last scan, in a period of just over 3 months on adriamycin it had increased from 5.1cm x 4.2cm to 6.7cm x 5.2 cm.  The smaller tumour had not changed dimensions as such but had changed shape with the lower portion being more prominent and growing closer towards the outer surface of my liver.  They confirmed the only chemo therapy option I have left is weekly Taxol and I would get scheduled to start it as soon as there was a bigger opening in the schedule than the one I currently had – I said I was ok with having a small break before chemo starting because I would like to go away.

So immediately after the appointment we came home and finished getting packed for our short holiday.  The only thing that went wrong was that I packed up all my medication at the last minute into a bag and with a really bad case of miscommunication between OH and I it got left at home.  Whoops, what was I going to do?  I had enough in my handbag to get me through a day but we are lucky that R works for a logistics company and was able to organise couriering them to where we were staying.

The long drive in the car wasnt helpful to my pain as the lumbar support in the front seats increases the pressure on my ribs.  We discovered by trial and error that it was better for me to sit in the back with some padding and a pillow that changed the angles of how my back sat against the seat and also soften the pressure that was remaining.

The weather while we were away was for the most part similar to the pictures in this blog post but the accompanying high temperatures did wear me out a little.  As it was a fairly active trip with visits to the Cape (where I walked down to the lighthouse and back) and to the giant kauris etc, I almost felt like I needed a holiday to recover from my holiday.

Te Matua Ngahere 2000 year old Kauri tree

Te Matua Ngahere 2000 year old Kauri tree

We arrived home to find the date for me starting the new chemo had been scheduled to be the 7th of March so we made the most of that by booking another smaller trip away next week.  This will be back to Tutukaka, the same place we went for our honeymoon 28 years ago and where we went back to this time last year.  We have even managed to book the same unit as last year.

I start Uni next week as well.  I have dropped back to just one paper for this semester and we will just see how I manage it.  I feel like I need to keep going to uni to retain something normal in my life.  I have my first class on Tuesday so OH will pick me up after class and we will head off straight away having packed the night before.  I will remember to pack my meds properly this time.   This will be much more of a ‘relax and enjoy the view from the motel’ type of getaway than the last one was so I hope to come back relaxed and refreshed and ready to start chemo the following week.  Hopefully the weather is good and you will be treated to more pictures of stunning summer days and scenery.

beach and dunes at Opononi

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.

 

Septimana horribilis

A dreadful week

It has been a very hard week.  I had been feeling very stressed with ‘scanxiety’ waiting to hear what the scan showed and Dr H ran out of time to let me know the results before he went away last Friday.  With a long weekend and the fact that my assigned oncology nurse specialist KS was not at work until Wednesday meant that I didn’t find out until then anything about my scan results until then.

However before that happened, Tuesday had already hit me very hard emotionally.  I woke to the news that one of my blogging friends , Rachel of The Cancer Culture Chronicles had died, we had commented on each others blogs and had communicated on twitter and understood where each other were at in our journeys with metastatic breast cancer.  Her death was quite sudden in the scheme of things, she had been admitted to hospital with seizures,  but those of us that knew her in the blogosphere expected her to pull through as she had done with so many other hospitalizations which she had written about with her characteristic wit and humour.

While I was still absorbing that news, about 11 am on Tuesday I got a direct message on Twitter from Sunday and an email from Stella telling me that Susan (@whymommy) had died.  Susan, I was even closer too than Rachel, we met through twitter, we shared the diagnosis of IBC, she had asked me to join the ‘Mothers with Cancer’ group blog and we had let each other into our real lives by becoming friends on Facebook.  Although we had never met she was a very real friend because of our shared experiences. I was proud to be part of her Lego princess army and know she valued our friendship across the miles just as much as I did.

Two amazing women gone in one day…. the internet community that we were all part of , on twitter and blogs, was stunned.  We grieved together, many of us in tears.  I used the term heartsick to describe how I felt, the grief was making me feel literally sick.  But would I trade not knowing these women if I then didn’t have to feel such heartache? No, because knowing them has made my life richer, my belief in myself stronger and given me a sense of solidarity in sisterhood.

Wednesday came – I had already booked  to have counselling at the Cancer Society in the afternoon so organised with KS that I would come in and see her at the hospital to see what was happening.  I joked with a couple of people that it was the first time I have probably really needed the counselling but it was true.

KS couldn’t give me all the details but the gist of things is this.  The scan shows definite progression and growth – I will find out exactly what next week when I meet with the oncologist.  Dr H had seen the CT scan and come up with a possible plan but just run out of time to tell me before he went away.  So the oncologist that I see next week will be working off his plan.  It definitely means I will be starting a new chemo and my latest blood tests which KS was able to give me the results of also backed that up.  My tumor markers continue to rise and whereas in the past I could console myself that they were on the comparatively low side for aggressive metastatic cancer that is no longer the case.

OH has just started 3 weeks annual leave.  We have made plans to go away with C, ‘our French daughter’, if the doctors allow me to have a couple of weeks off chemo (I didn’t have it this week as the Adriamycin is obviously not working).  If we can we will leave on Wednesday directly after my oncologist appointment and be away for 4 days.  If not OH and C will go without me as C needs to be back the following week for Uni preparation and  OH and I will try to go away in between chemos some other time.  I will try to put a quick update on twitter and on the ‘Get Out Gertrude’ Facebook page before we go but probably wont have time to write a blog post in its entirety.

In closing I just want to do a big shout out to all my friends, whether I have met you in person or not.  Thank you for being there, in whatever way, shape or form that might be.  I love you all.

 

 

Uncertainty

Subtitled : My laptop as analogy for my life

Those of you who are my friends on Facebook will know I had some issues with my laptop earlier this week.

It locked up and when I had to do a hard reboot by powering down and restarting it gave me a message on startup (black and white screen before booting to windows) – the message read as follows Smart message: Hard drive failure imminent – back up your files and replace hard drive immediately.  Press F1 to continue.

Needless to say I pressed F1 and nothing happened. I powered it down again and when OH came home he pressed F8 repeatedly as it was starting up to get it to open in ‘safe mode’ and we got it up and running again and Gary did the back up of all my files.  I do realise for those of you who aren’t computer geeks a lot of the last few sentences while not mean a lot to you but they are integral to the point of my story

Since then my laptop has been running smoothly but in talking to someone whose job it is to fix computers the hard drive is likely to fail soon.  We could replace the hard drive but with laptops it becomes an issue whether it is just cheaper and easier to buy a new laptop.

I have used it for shorter amounts of time each day and made sure I havent got several programs running at once so I don’t overtax it but today because I have been home all day and on the computer a lot I have used OH’s desk PC just to be on the safe side.  I can do this while OH is at work but it is a little more uncomfortable than being curled up on the couch like I usually am.

We are left with several dilemma’s

Do we go out and buy a new laptop and load all my stuff on it to allow for a smooth transition? Do we wait for it to die and then do it? Do we buy a new one and then find out the hard drive on my old one lasts a lot longer than expected?  I had thought to buy a tablet (Ipad or similar to complement my laptop) but they don’t do everything I need so I have  to let the idea of a tablet go.

My laptop has been my lifeline for the last 3 and a half years since initial diagnosis and will continue to be so.  Whether it is writing blog posts for ‘Get Out Gertrude’  doing my Breast Cancer Aotearoa Coalition  committee work, Uni study and assignments, or using Facebook for many purposes: – keeping up with friends and family, being part of IBC groups, or just playing games to ‘vege out’,  etc and so many other activities I do on my laptop, it has allowed me the freedom to be on the sofa or even lying on my bed and being comfortable while I am keeping my mind actively engaged.  I need a laptop to retain my sanity or what passes as the resemblance of sanity for me

How does this equate to my life?

I have sat at home all day waiting for some news from my oncologist as to what my scan showed.  Although he was not going to have the official report he had hoped to look at it and make some decisions before he went away for a couple of weeks.  If he hadn’t been going away I would have just seen him next week to discuss possible treatment plan changes.

Not knowing when my computer is going to fail is similar to not knowing what I am dealing with in regards to ‘Gertrude and her spawn’. As I have said in the past it is the not knowing that does my head in. It is so hard to make plans and decisions – either short term or longterm when timeframes are so indeterminate.

The not knowing doesnt just affect me – it affects my family too and their plans.  Even when we get the news of my scan results and what the short term treatment options are there is still the bigger ‘what ifs’ and whens’ hanging over all our heads.  What do I and they make as our priorities changes if I have got a shorter versus longer time to live.

And one thing that I have learnt along this journey making friends with other women with IBC or metastatic cancer is that the situation can change very fast and the end can come sooner than expected.  My friend Susan (@whymommy) is entering that phase now.  Say a prayer for her and her family-  you can read her latest blog post here

January

I’ve been a bit missing in action on the blog front in January.

I have struggled to find balance.

I have been either too tired or too busy to write any blog updates.

The new chemo (Adriamycin) and pain medication has  been affecting me a lot more than the last two chemos, (vinorelbine and xeloda – oh not to forget the top up of herceptin) that I have had over the past two years, have and I have struggled finding a ‘new normal’, a new equilibrium where I can do the things I need and want to do without wearing myself out too much.

What have I been doing?

my column of our calendar for the last few weeks

 

I spent a day and a half in Christchurch for K’s Funeral, meeting up with CR and CM and spending the night with nieceB and nephew S and his lovely fiance J.

I have carried on with the ‘Cancer Wellfit’ programme.  My trainer was away for 3 weeks over Christmas but I kept up with the cardio part of the exercises on a Tuesday and a Thursday,  while this made me tired it also I think  conversely gave me a little more energy or ability to deal with being busy.

I have helped OD find her wedding dress and bridesmaid dresses

I have had blood tests every Wednesday and Chemo every Thursday.

I have spent a few moments catching up with friends.

I have indulged myself by having High tea at the Langham and Yum cha

high tea

I have helped C our French daughter acclimitise and helped her sort out her uni enrollment

I spent time with N (another exchange student) that was in New Zealand for a month. (and bought beads for my bead bracelets to commemorate their visits)

I have been to the beach once or twice

beautiful day at the beach

I have had a bone scan which required me to be in Auckland most of last Wednesday.

I have had a nap most afternoons.

and when I haven’t had a nap I have gone to bed early.

That has been my January 2012 up to now.