Hi and welcome to Get Out Gertrude – this is my main page and as such will have all my posts on any subject. If you are looking for posts I have posted in specific catergories you can click the menu above the header picture – for example if you are looking for stories purely to do with Inflammatory Breast Cancer click on that heading – or want to read about trips/ travel click that heading. My twitterstream to the right will both contain mini blogs in between my larger posts but also give you an insight into some of the other things I am interested in. Medical info on inflammatory breast cancer can be found in the links to the side of this page and so on. Thanks for stopping by!!
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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 likeAll 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 etcBlogs I follow
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Posted by jaydub26 on September 13, 2010
http://getoutgertrude.wordpress.com/2010/09/13/welcome/
Getting on my nerves
This chemo (Taxol) is literally getting on my nerves.
One of the major side-effects of chemotherapy treatment with Taxanes – Taxol (Paclitaxel) or Taxotere (Docitaxel) – is that as well as hair loss, nausea and all the other usual side effects you hear about, they cause peripheral neuropathy which is that they damage the nerves in your extremities such as your fingers, feet and toes.
It builds up gradually and at first you dont notice it other than the occasional little tingly feeling in your fingers or toes.
How much peripheral neuropathy I get will be one of the deciding factors on how long I stay on Taxol.
It has been getting worse over the last month and especially in the last couple of weeks. I lie awake at night with a tingling burning feeling in my toes and the balls of my feet – its ‘tingly burning’ to the point of being painful. I can feel it in my fingers as I type these blog posts with each key stroke feeling simutaneously slightly numb and slightly more painful.
Holding a pen to make notes at uni on Tuesday was another time when I realised it was getting worse, and it made me wonder how well I am going to be able to write in my upcoming exam (middle of June), as well as having quite a lot of work on an assignment to type up in the next week.
I struggled to do buttons up on OH’s work shirts after I washed them – I dont tend to wear things with a lot of buttons myself – thank goodness.
What it comes down to is whether I am getting enough benefit from the Taxol versus the quality of life while I am on it.
My next oncologist assessment appointment will be the first week of June, and I know it is going to come up for discussion then. Ordinarily my next appointment would be on the 30th May but because of OD’s wedding on the 1st of June we have delayed the oncologist appointment and taken that week off chemo as well so we can concentrate on the wedding and family.
Posted by jaydub26 on May 19, 2012
http://getoutgertrude.wordpress.com/2012/05/19/getting-on-my-nerves/
In case of emergency
While I have been in treatment for the last 4 years I have carried a business card holder in my purse with all the hospital contact cards such as this one
as well as the contacts for the appointment scheduler, my oncologist, my nurse specialist, my cancer society liason nurse…etc…etc…etc
On Tuesday I had an appointment for counselling at the Cancer Society in the afternoon after attending my uni class in the morning. I had taken the train up to uni and AW dropped me in Newmarket on her way home after we had attended class and had lunch, so that I could kill time until my appointment at 2pm. I decided I would be ‘good’ and not tire myself out by wandering around the shops too much before catching the bus for the short trip to my appointment so I bought a magazine and went to the mall foodcourt and ordered a ‘Tank’ Juice and sat and read at one of the tables. As I sat there I started having one of my ‘cold & clammy’ dizzy spells. Dr H says they are caused by the large tumour in my liver -according to him as it has got bigger the inside of the tumour has started being starved of blood supply and has started to break down and every so often it releases the toxins from this cell breakdown into my blood stream which causes the ‘cold clammy spells’
Now usually when I have them when I am sittting down they pass very quickly and I feel capable, even if still feeling a little off colour, of doing what I need to do. Tuesday was not like that… As I sat there over a period of quite a few minutes the dizziness got worse and even putting my head down on the table did not remedy the situation. I had to end up asking the man sitting a couple of tables away from me to go and get someone to help me. He got one of the foodcourt cleaners to get hold of the centre management who come to help. I was lucky I was still coherent enough to tell them I didn’t need to go to the hospital I just needed to lie down and help them find OH’s number on my cell phone so they could ring him. He had to leave work and come and pick me up. The centre staff were very kind and took me to the management offices where I lay down until OH came.
Quite frankly this episode scared the h*** out of me. I realised that I needed to have something on me that people could read and understand the situation if I passed out and couldn’t tell them anything. My solution? to put a bright sticker on my card holder so that as soon as someone looks in my purse they would be able to get the information to be able to help me. I composed a card to add to the others explaining what to do in case of emergency and what was wrong with me and added it to the front of the holder. I know the time is coming when I won’t be able to go out on my own if I continue to get sicker but this at least helps in this interim stage.
MD was angry at me for not going to the hospital to get checked out but I knew that there was notheing else they could have done for me other than let me lie on a bed until the dizziness passed. I checked with doctors on Thursday when I went in for chemo whether I should have gone into the hospital and they said probably not but to ring them the next time it happens. They also checked me out including some motor skills assessment to check that it wasnt anything more sinister.
The one thing they did find that was different from normal was my blood pressure was a lot more elevated than normal and they are wondering whether that contributed to Tuesday’s episode. I have had to go to the GP’s on Friday and Saturday to get it checked to see if it remains elevated or whether it is falling back to more normal levels. So far it is remaining elevated. This shouldnt be a chemo or other medication side effect but if it remains high it will need to be investigated and controlled.
Posted by jaydub26 on May 19, 2012
http://getoutgertrude.wordpress.com/2012/05/19/in-case-of-emergency/
Mixed results
At my oncologist assessment appointment on the 8th of May to get my latest scan results – I burst into tears. Why – because of bad news? No, because there was no official scan report from the radiologists. When you have psyched yourself up to deal with results, good or bad, getting no results is actually worse because you are left in a state of suspended anticipation, ‘ not knowing’ the ‘what ifs’ crowding your mind, which as I have said many times before, does my head in far more than knowing facts and figures even if the facts reveal bad news.
The Radiology department of Middlemore hospital ( the local hospital where I have to have my CT scans vs Auckland Hospital where I receive my cancer treatment) has some major issues around scheduling and reporting. While I can’t fault the technicians and nurses that actually facilitate the scans, I have always had issues getting the scans scheduled within the timeframes that my oncologist wants them and we have always had to wait longer than necessary for the official radiologist report. I do not think this is good enough when you are talking about people’s health.
To make it worse, at my oncology appointment I saw a new registrar Dr KN who didn’t know me at all and so could only go on what she had quickly read in my notes. It was a slightly weird consultation as we were discussing what options I had around continuing chemo without knowing what the scan results would ultimately show. She promised to ring me as soon as the scan report came through and let me know as well as posting a printout of the results out to me.
I got the phone call the next day. My larger tumour in segment 7 of my liver has now grown to be 9.4 cm x 7.1 cm up from 6.7 x 5.2 in my February scan.
Dr KN then went on to talk about the other tumour they had measured which now measured 1.1 cm. I think I surprised her by asking her what segment it was in. My second tumour, in segment 2, had been measuring 2.5 cm so I thought she was saying it had shrunk. But no… this is a third, new, tumour in segment 6. She went on to say that they had not been able to get an accurate measurement of the segment 2 tumour.
I decided not to do a blog post about this until I got the written report so I knew exactly what they said, and I also wanted to get my head around what the results might mean, which is part of the reason this blog post hasn’t been written before now.
I got the printout a couple of days after that. as well as the measurements I have reported above, it says that segment 2 is ‘difficult to define due to perfusional change in the left hepatic lobe’ ( meaning the way blood etc is flowing through that part of my liver is partially obscuring the definitive boundaries on that tumour) they also say ‘ there are other small foci which are indeterminate for liver metastases or focal fatty sparing’ – this means because I have got fatty infiltration of my liver that until tumours grow to be about 0.5- 1 cm it is hard to differentiate them from fatty globules. What this means is at the moment we know that I have 3 definite tumours but possibly quite a few more. We wont know until they start growing a bit more. We actually don’t know for certain where or how many ‘spawn of Gertrude’ there are
To put these measurements in perspective I investigated what an average liver’s dimensions were, – me being my usual investigative ‘facts and figures self’. I know my liver is slightly enlarged and that also my larger tumour is pushing out of my liver by a good couple of centimeters at the least so all of its dimension isn’t taking over within the liver itself but the average adult liver is 20-23 cm transversely and 15-17 vertically and 10-12 front to back. So especially the largest tumour is fairly significant in relation to the size of the liver as a whole.
That’s the bad news… the good news is that my tumour markers continue to fall, from 557 to 249 which reassures me there aren’t quite so many cancer cells circulating in my blood looking to ‘set up home’ elsewhere and my liver function tests remain stable.
What does this mean for carrying on treatment. I will discuss more in a following blog post some other factors that have come into play but in the discussion on the 8th and subsequent phone discussion with Dr KN we decided to carry on for at least this cycle and hopefully another couple and then scan again. as we don’t know how much of that growth between the scans on the 1st February and 2nd May happened in the month I was off chemo in February and how much has grown while I’ve been on the Taxol. At most the Taxol is keeping it stable, it isn’t shrinking it at all.
Posted by jaydub26 on May 19, 2012
http://getoutgertrude.wordpress.com/2012/05/19/mixed-results/
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”
Posted by jaydub26 on May 7, 2012
http://getoutgertrude.wordpress.com/2012/05/07/pacing-myself/
Treatment and tumour marker update
In a previous post I talked about how my tumour markers had jumped markedly since the beginning of the year. I had talked about the fact that my count at my last oncology assesment 3 weeks go was 689. Talking more to Dr H this week he explained it wasn’t a new way of testing the CA15-3 but a new way of measuring – semantics I know but important distinction to know. I had gotten confused when he was talking to me last time and I thought the 689 figure was under the new measurement system but in actual fact it was under the old system and my figure under the new measurement system was actually even higher…779…gulp…!!!
The good news is which ever way they count it my tumor markers have fallen again. Not as low as we would like but it is making me hopeful that the CT scan will show improvement too. Under the old measurement system tumor markers have fallen to 465, under new system 557, so you can see the points drop is the same with either system approximately 220 points. My liver function tests are remaining stable as well. They will move to reporting the tumour markers purely under the new system in the next few weeks so from then on I will be reporting ones that line up with the 779 and 557… hopefully in the 300 -400 next time?
I had a bad cold this last week (another reason for lack of blog posts until now) and I thought that might be because my neutrophils were low but they have been holding steady this cycle at between 1.5 and 2 – anything above 2 is normal and anything below 1 is neutropenic – so I’m really pleased about that.
Although my scan was supposed to be done by the 1st of May, the powers that schedule these things at Middlemore decided that meant they could schedule it on May 2nd. This is a major improvement however on the times when the due date has gone by and I havent even received an appointment. ..And this time they have let me know my appointment time 3 weeks out from the scan instead of the 3 days notice they usually give me.
This means the next time I see Dr H on the 9th of May we will have the scan results. If they are good we will continue on with the Taxol for a bit longer then do another scan. If they are not then we are looking at moving to purely palliative care. But with the tumour marker drop I am very hopeful that it will be the former rather than the latter.
Posted by jaydub26 on April 19, 2012
http://getoutgertrude.wordpress.com/2012/04/19/treatment-and-tumour-marker-update/
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
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
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
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
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.

and the wig - only used for very important occasions, looks good but is less comfortable than the rest
Posted by jaydub26 on April 19, 2012
http://getoutgertrude.wordpress.com/2012/04/19/hair/
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.
On Sunday OD took YD to church while I prepared clues for the Easter Egg hunt – family tradition for YD
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
Posted by jaydub26 on April 19, 2012
http://getoutgertrude.wordpress.com/2012/04/19/family-commitments/
Taxol, Tests, and tumour markers
I have just finished my first cycle of Taxol, 3 weekly infusions. We are getting our heads around the side-effects schedule and are starting to know what are my ‘good days’ and what are my days that I really just need to curl up in bed for the day. So far it goes as follows chemo day is pretty good with all the premeds they give you. Following day I get a flushed face and feel a little out of sorts but not actually too bad. , next 3 days nausea, tiredness, headaches, cold and clammy episodes then the 2 days preceding the next chemo I feel fine again. Dr H thinks the cold clammy spells are caused by my liver releasing toxins into my blood stream hopefully from the tumours breaking down. My liver function tests show one liver function elevated but the others fairly normal.
One of the biggest problems with the side effects of Taxol is that it affects the side effects of morphine.
Warning: One for the TMI files:
One of the side effects of morphine is constipation. To keep myself regular, I have had to take medication with a laxative affect. However one of the side effects of Taxol is diarrhea so we are playing a very delicate balancing act between the two extremes, trying to not to overmedicate in either direction. but needing to occcasionally give it a gentle nudge. Such fun!!
Now on to the tests and tumour markers part of this blog post. I mentioned in this post about my tumour markers. Until the beginning of this year my tumour markers, CA 15-3 for those of you in the know, have always been on the low side. They have been under 100 even with me going metastatic and I have realised in the last couple of weeks how much that reassured me things weren’t too bad. They jumped to 155 (26th January) and thats when they decided to scan in February and since then they jumped to 190 (9th February) and in the month I was off chemo they jumped again to 299 (6th March) fairly linear progression of about 20-25 points a week, so far so good.
When I saw Dr H on Wednesday my tumour marker had jumped to 689 (29 March) - Yikes!! This could be for several reasons. Firstly they have bought in a more accurate way of testing it, which could either mean that this is a more realistic reading (or possibly that a technician has made a mistake with this new testing method). The other two explanations are that it is an ‘over-reaction’ of the tumours to the new chemo ( this would be good news as there is a possibility that it might have long term control and shrinkage of the tumours). or that the tumours is growing bigger and more aggressively and that the taxol isnt having any effect on it. The next tumour marker test result will be more truly indicative on what is really going on. If it has dropped or stayed it means the taxol probably is having an effect. This will be backed up by a CT scan I will have by the 1st of May which will show what is actually going on. So until then I am trying not to stress too much.
Deep breaths…. deep breaths…deep breaths…
Posted by jaydub26 on March 29, 2012
http://getoutgertrude.wordpress.com/2012/03/29/taxol-tests-and-tumour-markers/
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.
Posted by jaydub26 on March 29, 2012
http://getoutgertrude.wordpress.com/2012/03/29/a-little-rant/
Busy schedule then disruption
This is what I wrote on my ‘Get out Gertrude’ Facebook page 2 weeks ago:
Posted by jaydub26 on March 22, 2012
http://getoutgertrude.wordpress.com/2012/03/22/busy-schedule-then-disruption/
A break away
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
or while I am having lunch
and then when I have enough energy I can walk down the steps on the harbour side of the motel to this gorgeous beach
Posted by jaydub26 on March 22, 2012
http://getoutgertrude.wordpress.com/2012/03/22/a-break-away/
Whats been happening?
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.
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.
Posted by jaydub26 on February 22, 2012
http://getoutgertrude.wordpress.com/2012/02/22/1574/
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.
Posted by jaydub26 on February 12, 2012
http://getoutgertrude.wordpress.com/2012/02/12/not-normal-words/
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.
Posted by jaydub26 on February 10, 2012
http://getoutgertrude.wordpress.com/2012/02/10/septimana-horribilis/
‘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’
Posted by jaydub26 on February 2, 2012
http://getoutgertrude.wordpress.com/2012/02/02/the-faces-of-inflammatory-breast-cancer/
twitter
- mess cleaned up from soup spill but I dont know how safe outlet board is to use - don't think I will risk it 1 day ago
- oh @#$!#@!.. just spilt soup all over an electrical outlet board,.. and chair .. and carpet...what a mess! 1 day ago
- ok break time from assignment, my peripheral neuropathy affected fingers need a break from typing - think I need to break every 1000 words 1 day ago
- ok need to get to work on uni assignment - isnt due til the 1st but with @ScribblesNZ wedding want to get it finished by class on Tuesday 1 day ago
- nap time Zzzzzz.... 2 days ago
- lucky so hyped up on chemo pre-meds I could handle it & peripheral neuropathy (nervedamage - chemo side effect) stopped me feeling cold much 2 days ago
- sitting on driveway at 5am trying to calm down MD's ex enough that he'd go home &stop harassing her was not way to spend night post chemo 2 days ago
- chemo done for another week - home n time for a nap i think :) 3 days ago
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