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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

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

Results or lack thereof

I had my usual 3 weekly oncology assessment yesterday and got my bonescan results from last week which showed absolutely nothing of cancer interest. Which is what we had hoped for…but….

Along with the good news came a touch of bad.  My tumour markers which have always been low have shot up by 60 points from 91 to 155 in the last 3 weeks.  Dr H was very proactive and when he heard I hadn’t heard anything about my CT scan be scheduled – it was supposed to take place before my next oncologist assessment appointment on February 17th – he jumped on the phone to Middlemore and demanded they schedule it then and there while I was in the office.  so I have a CT next Wednesday at 10am.  He is away the following week and even thought he is unlikely to have the official report – he meets with the tumour review team on Thursday afternoon and will be able to access and discuss with the radiologists whether or not things have progressed further.  He only approved the Adriamycin chemo for today and next week and will let me know the new plan before he goes away.

The tumour markers combined with more pain over the last couple of weeks tend to make us believe that at best the tumours have not shrunk and stayed the same size but we think there has probably been progression/growth for them to jump that much.

We always knew Adriamycin was more of a stop gap measure that was unlikely to work for very long but I am disappointed that only after 3 cycles (9 weeks) it looks like it hasnt worked at all.  We are starting to run out of chemo options and I had hoped for a little longer on this one.

We should know more by the end of next week – I promise to do another blog post then

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.

Chemo et al

Well my neutrophil count was finally above 1 this week – 1.26 to be exact, so chemo was given yesterday (Thursday) ,thank goodness!!,  without any further need for blood test to confirm yesterday or checking with my oncologist to decide whether to proceed.

I saw Dr H on Wednesday and he decided to cut the dose by 20% from 50 mg to 40mg which will hopefully keep my counts a little more stable and closer to the 1 mark but he has also said that if they are stable and I am not feeling sick that he wants me to have chemo if my count is above 0.5 because I cant keep missing two in a row like I did over Christmas and New Year.  Usually the nurse specailist make the call but he has said in future if there is any doubt of whether or not to give me chemo with low blood counts it needs to be discussed with him and he will make the call.

Good news is my tumour markers have fallen slightly with the little I have had so we are hopeful that more consistent doses at 40mg will continue this downward trend at least for the moment.

Dr H has scheduled a CT scan for the middle of my next cycle (beginning of February) to see what is happening and he has also aksed for a bone scan to be done within the next month just to confirm the pain I am experiencing in my back is just all from the tumour pressing on nerves and no cancer in the ribs themselves.  Nothing showed up in the CT scan but it is not sensetive to smaller bone metastases so we are just doing a Bone Scan to confirm.

The new regime of 3 long release painkillers seem to be working well to make me comfortable most of the time, and my gym work is paying off with my blood pressure while never really high has to returned to its more normal and healthy (for me) reading of 120/80 so I am feeling pretty good about things at the moment.

We have a plan and its seems to be working so we will stick with it till  it doesn’t anymore 🙂

A phone call

In early December I received a phone call from my friend K.  It is a phone call I will always remember.  She was ringing me to talk about the latest events in her journey with Inflammatory Breast Cancer.  The metastases in her liver were growing out of control and there was no longer any chemo they could try.  She was now in palliative care only.  She had reached some acceptance of what was going to happen and had made her peace with it.

As I listened to her talk I couldn’t help but feel privileged and honoured that she had rung me to talk – We only got to know each other originally through Sweet Louise when she wrote a forum post asking if anyone else had Inflammatory Breast Cancer.  She had liver mets at diagnosis June 2010.

Like me, she wanted to be proactive in spreading awareness of IBC, and was very supportive of me setting up the Australasian IBC network with our other New Zealand and Australia ‘IBC sisters’.  We call each other ‘IBC sisters’ because we are part of a sisterhood none of us wanted to belong to, but we have that bond to support each other through shared experiences.

I put her in touch with other IBC sisters internationally too though our mailing lists and Facebook group

K and I spoke often, on the phone and through Facebook chat, and when she came up to Auckland in September, for some Rugby World Cup games, I got to meet her face to face for the first time.  She felt guilty that she hadn’t done more in the name of IBC awareness but her treatments made her too fatigued a lot of the time.

Ever since the phone call in December I have been waiting for another phone call, we had exchanged a couple of text messages when she felt up to it but she has been absent from Facebook, I knew it was  only a matter of time.  My niece B has been one of K’s home care nurses, and K gave her permission to keep me informed (without going into details and breaking patient confidentiality) Though our New Zealand IBC sisters in the Australian IBC network I had also put her in touch with another woman, C who also lives in Christchurch and C was able to pop in and see her on Christmas Eve. So between C and B I was kept informed.

B informed me on Tuesday night that K had started to deteriorate more rapidly and when I got a text from B yesterday morning, without even opening it, I knew what it would read.

C rung me last night and we grieved for K together.  And this is what the sisterhood is about.  K rung me on the 10th of December to talk because she knew as someone with IBC with liver mets I was not a total stranger to dealing with what she was going through – although not as far down the path as her – I have faced thoughts of my own mortality and made peace with what ever is going to happen so I could understand and support her in a different way a way that her family and friends, no matter how supportive, could not.

I am flying to Christchurch for K’s funeral and meeting up with C.  We are going to brainstorm how to carry on K’s desire for spreading IBC awareness the breadth and depth of New Zealand.  K’s family is also aware of that desire and want to help and are going to tell funeral goers how important it was to K and ask for their support too.  This will be part of K’s legacy.

Rest in Peace K, you were a gorgeous lady and I am glad to have been your friend and ‘sister’ on this journey.  And whatever I do in IBC support and awareness in New Zealand will be in memory of you.

Downs and Ups

No chemo again for me this week… the strangest thing happened and instead of my neutrophils rebounding as we thought they would with no chemo the week before, instead they actually went lower – sliding from 0.9 to 0.5 which meant definitely no chemo for me this week.  I hadn’t felt like they were down that far, in fact I had been commenting to C about how I had so much more energy with not having chemo.

I have my next oncologist appointment on Wednesday so we will have to discuss where we go to from here.  Do we decrease the dose, carry on with the dose we have got and  hope the neutrophils behave themsleves enough for me to get adequate amounts of the chemo even if we have to miss the odd week or do we switch to the only other chemo I’ve got left to try.

I must admit it worries me a little that if I am not having chemo it is giving the tumours a chance to grow some more,  but hopefully if it is having that much of an effect on my blood count then it will still be knocking the tumours back as well.

My hair is taking longer to fall out than we expected but this week when I have been rubbed my head I have had a palmful of short hairs coming off. My buzz cut is looking very patchy.

my patchy scalp

But I have a variety of hats to cover it up with such as these turbans that I found in a young womens fashions store.  I’m obviously ‘on trend’ for Summer LOL

one of my trendy turbans 🙂

My face is looking a little rounder from the steroids causing water retention but other than that I’m quite happy with the way I look when I am out and about.  Having gone through hair loss before definitely makes it easier this time.

The upside of not having chemo for the last two weeks means I have felt a lot more well and energetic over the Christmas /New Year period.  I have had more energy to go out shopping with YD and C while YD was home for a few days for Christmas.  I travelled to the other side of Auckland to help MH (one of my uni friends) celebrate her 50th birthday on the 30th and celebrated my own 49th birthday with a lunch out with family on the 31st.  Apart from having to take my regular pain killers I have felt rather good.  And to a certain extent you ignore pain and discomfort if you are busy or having fun.

Today is the first day of 2012  – I am both excited and a little concerned about what the next year will bring me.  But I am already starting to plan my 5oth birthday party for 364 days time 🙂

Happy New Year Everyone!!

 

Merry Christmas

Merry Christmas Everyone!!

our Christmas tree

We had a smaller immediate family Christmas Day yesterday with OH, myself OD, MD, YD, OD’s R, MD’s boyfriend A, and our ‘French daughter’ (our AFS exchange student from 2006 ) C.  So our smaller family Christmas was bigger than it usually is. 🙂 This included bacon sandwiches for breakfast and  a more formal sitdown dinner in the early afternoon.

We have an extended family get together this afternoon/ evening with Sis M and her family, R’s family, and Niece S’s in laws as well.  This is more informal, with everyone bringing some Christmas dinner leftovers and is a very relaxed time.

I could have dwelt on the fact that this year I am metastatic and we dont know how many more Christmases I have got but  C and another exchange student N both arrived on the 20th of December.  (N is staying with her host family but visiting us often – just the same as it was when she was here in 2006.) N dropped in to see us last evening as well to exchange presents.

With C and N arriving so close to Christmas – C is staying with us until the end of July 2012 – It has added a new dimension to our Christmas preparation and celebration and has been exciting for us all.  I have chosen to concentrate on these and the other more positive aspects of Christmas instead of feeling down at all.

YD is home for a few days over Christmas as well so we are fairly busy.

Although it is not necessarily good for my health, I did not have my chemo that was due on Thursday because my neutrophil and white blood cell count was too low.  But the upside of that was that I have not had to deal with the side effects – nausea and suchlike – for the Christmas period.  So it is quite a positive thing in my book

I hope everyone else has had a good Christmas too

Several mini-posts

I have quite a bit to tell you but none of the following topics warrant a long enough blog post to themselves so I will break it up under headings

‘Chemo chauffeurs’

With my chemo being weekly and if the Adriamycin works I will be on it till April so if any of my more local friends want to book a Thursday to keep me company at Auckland Hospital  – its only a very quick chemo takes about an hour or so and the appointments mean I’m at the hospital about 11, 11.30 – 1ish – let me know so I can add you to the roster of chemo chauffeurs.  We are all good until mid January at the moment, MD, OD, OH and JMJ have all had turns, and the girls and OH can take me if no other volunteers but just thought I would put it out there to see if anyone else wanted to volunteer. Ring or text me if you are interested.

Guess my Neutrophils

As the Adriamycin is another chemo like Taxotere and Vinorelbine that can affect my immune system I have to keep an eye on my neutrophil (new white blood cells) count.  Above 2 is normal (around 4 is usual) and if it drops below 1 I can’t have chemo.  With the past experience I have had I am getting pretty good at gauging what level I’m at but I realised just how good yesterday.  Since I’ve started Adriamycin my blood counts on a Wednesday before next chemo on Thursday have been 4.5 after the first chemo and 1.7 after the 2nd.  When talking to RI (Cancer Society Liaison Nurse) when she rang to check on me on Wednesday afternoon I said that I felt they were possibly a fraction lower than the week before from the way I was feeling and that I thought they would be about 1.5  – Official result yesterday: 1.49 – how good am I at gauging it???!!!

Other Chemo side-effects

As the toxicity builds the nausea and other side effects are becoming a little harder to ignore  – We are experimenting this cycle with adding another med to the mix and seeing how it goes. I have to take steroids the day of chemo and the 2 days following to counteract allergic reaction and they do tend to help with the other side effects.  I actually feel more fatigue, nausea etc Sunday Monday.  Afternoon naps have become my friends.  I am still doing my Cancer Wellfit gym program and I know that is helping keep my fitness levels up and helping me cope.

Hair today, gone tomorrow

I bit the bullet and got my hair shaved at my hairdressers on Tuesday, it is just starting to thin in patches and should be all gone by Christmas.  This time is way less traumatic than losing my long curly hair I had all my adult life was the first time, and I actually went by myself to the hairdressers on Tuesday.  As I was saying to A, the hairdresser, part of that was purely psychological.  I am in control of so little at the moment as far as ‘Gertrude’ and her spawn in my liver go, that this was one thing I could control and could decide when to shave my hair and go and have it done  by myself.  It was very empowering in a way.

the shaved heair look - its all the fashion 🙂

apolgies for the typo in  the pic caption it won’t let me edit it and change at the moment

one of my favourite hats 🙂

Goodbye Judy

Yesterday I learnt that my fellow IBC ‘sister’ Judy had died. I shed some tears for her because even though we had never met we had shared our stories and lives with each other through our blogs then twitter and facebook. It happended very fast after she found out she had more progression in her liver tumours a few short weeks ago.   She wrote her story at ‘Just enjoy him’.  I have other IBC sisters also going through very rough times at the moment, Susan (@whymommy at ‘Toddler Planet’) and one of my New Zealand IBC ‘sister’ K in Christchurch (who by a stange twist of fate has my niece as her nurse who pops in to see her at home) .  I also know other women with BC who are facing bigger hurdles than I am, Ann (http://www.butdoctorihatepink.com/) and Natalie ( http://www.helpnat.com/).

Judy and Susan and Natalie all have younger children and that breaks my heart a little for them and their children.  One thing I am grateful for is that I got to see my children grow to adulthood – I may not live long enough to meet all the grandchildren but I know that I have done my best to leave my girls well prepared to bring up their own children, and I am content with that.  Even YD is in a place and stage that I feel ok about it.

Reading about these women and/or having them in my life puts my own position in perspective and makes me more determined to make the most of every moment I have left.  When talking to LW last night I actually invited her to my 50th birthday party – still over a year away – late December 2012, and I am setting goals like that and ODs wedding June 2012 as  dates to still be around for.  Any of you that can make it  are invited to my 50th.

I will miss Judy who was the same age as me – she had a wicked sense of humour which shone through on her blog and facebook, and my thoughts at this time are with her family  – RIP Judy

Adriamycin – week 1

I started on the Adriamycin a week and a bit ago now so thought I would update on how the first week went.  For most of it I was feeling very tired, sleepy and spaced out.  We don’t know whether it was a combination of the new painkiller regime and the new chemo but it really knocked me for six.  The nausea was kept under control by the steroids and antinausea pills but I do need to carry stuff in my handbag all the time to keep the meds topped up. It has been quite an appetite suppressant as well, my taste buds have started to revolt and I am having to make myself  eat at times. (ah well – I’m classed as overweight so it won’t hurt to lose a few kilos) I had a bit of a weird reaction in that I was actually most nauseous on the Tuesday – 5 days after chemo and also went a bit cold and clammy – so we are wondering whether that was unrelated to chemo.  I was feeling like a box of birds on Wednesday though.  I have to get blood tests every Wednesday before chemo on Thursdays and I am starting to get to recognise if my white blood count is low from my problems when I was on Taxotere and Vinorelbene.  I knew by the way I was feeling on Wednesday that my neutrophil count should be in the normal range and it was.

As the chemo toxicity levels build up over the next few weeks I am going to have to keep an eye on my blood counts though.

I must admit with feeling so spaced out  I started to cut back on the dose of the painkillers.  Even though they are the smallest dose I have a bit of a psychological block to being on morphine.  I don’t want to admit that’s where I am at. Combined with that  is the knowledge that within a couple of weeks I am going to noticeably look like a cancer patient again (losing my hair) and the fact that when the Cancer Society Liaison Nurse visited and checked up on me on Monday,  she brought up the subject of Hospice.  It is not that I need it right now but she thinks it would be a good idea for me to meet with them and find out what they offer so if I decide I do need their services further down the track some of the groundwork will already be done.  All of this was making me look very squarely down the barrel of something I don’t like contemplating too much day-to-day, and it did get me down.

MD took me to Chemo on Thursday and when I was talking to KS, my assigned oncology nurse specialist at the hospital, (she’s not the chemo nurse – she just checks up on me and she’s the person that helps the doctors co-ordinate my care) they both told me off for trying to be a martyr to the pain, KS said that if I keep taking the painkillers regularly my body will adapt to them better.  So I’ve been doing that since Thursday and haven’t had the same reaction as last week.  Thank goodness!!

Here we go again

Now that we are all caught up with my activities over the last few weeks I can update you on my oncology assessment appointment (Wednesday) and my first Adriamycin chemo yesterday.

I had to go in early on Wednesday to get an ECG done to check heart function before the Oncologist signed off on me receiving Adriamycin – like Herceptin Adriamycin can affect the heart.  With Hercptin the damage is reversible, with Adriamycin its permanent.  I am pleased to say that I passed my ECG with flying colours.  With being off any chemo for the past month my tumoour markers have jumped another 30 points so it does make me wonder how much bigger the tumors have grown in that time, although my liver function are still fairly normal (Note: blood tests were done before champagne tasting – liver results could have been possibly worse after LOL)

I have been having some pain in my back and although the the CT report did not show any tumors/lesions in my ribs they did take another look as I was getting very localised pain around one rib.  What they have realised is that the tumour that is section 7 is actually extruding out of the surface of my liver and compressing the capsule around my liver that has nerves and blood supply up against my ribs in that area.  Because the nerves are getting pinched between the tumour and my rib that is why I am getting so much localised pain there.  I have also been having intermittent pain in my shoulder blade which I had put down to stress but they think that is also referred pain from the nerves around the liver as they share the same trunk nerve.  This makes sense to me as I have not had anywhere near the same amount of neck tension pain you would expect if the shoulder blade was purely tension related. 

I have been trying to get by with just standard pain medication, panadol and the like but have not been sleeping well as my back tends to hurt more when I am lying down so we have decided to start me on the opiod drugs – a slow release one just to help me sleep at night and some quick release ones for break through pain during the day.

I struggled on Wednesday night taking the first one,  I had hoped to avoid going down this path – and part of me didn’t want to admit I was in enough pain to need them.  I was also struggling with the fact that once I had my first Adriamycin on Thursday I was on the slippery track to losing my hair again.

While I am relatively OK with losing my hair – it isn’t anywhere near as bad the second time round, the fact is I have managed to get through the last two years although I’ve been on Vinorelbine and Xeloda neither of them have made me lose my hair so I haven’t obviously been a cancer patient.

The combination of the certainty that I am going to lose my hair again and the upgrading of my pain medication makes it harder for me to forget that that is what I am, and it also makes it more obvious to others.

I had an interesting discussion in the chemo room yesterday with the young woman in the lazyboy next to me – she has  metastatic breast cancer (triple negative- both hormone and her2- negative ) to her bones, diagnosed just a few months ago while brest feeding her baby who is now 7 months old – she has a 2 year old as well.  She is frustrated by peoples misconceptions that all breast cancer if detected early enough is curable.  Her tumour in her breast was less that a couple of centimeters but it had already spread to her lymph nodes, after her surgery when they realised how many nodes were cancerous they did a bone scan and realised it had gone to her bones as well in the chest area.  Now that the shock has worn off she is starting to realise that she needs more info so I am putting her in touch with some other people and sites that she might find useful.   ‘practising my Social Work skills in the chemo lazyboy’

Just remember  folks not all breast cancer is the same and while breast cancer screening catches a lot of early stage cancer – there is about 25% of us that fall outside either the usual age range or in my case have a cancer that cant be picked up on mammograms and those are the ones that are usually more aggressive.  We doing everything we can to fight this thing but through no fault of our own we may not have a “pretty pink perky survivor” ending