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”

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

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

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

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.