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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

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

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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.

 

 

‘The Faces of Inflammatory Breast Cancer’

This video was created through the IBC / BCMets facebook group that I am part of. 55 of us contributed pictures and one of our members, Tina, put it together on Vimeo.

As I am a cheapskate and only use  free wordpress features I can’t embed the video into my blog  but I urge you all to click on the link through to the video and feel free to share it.

We are wives, mothers, sisters and friends.

We are ‘The Faces of Inflammatory Breast Cancer’

http://vimeo.com/36101352

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