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

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

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

    No Princess Alone button

Am I capable?

I had to ask the university for a dispensation to do a ‘Michael Jackson impersonation’ for my exams that are coming up.

Due to the friction causing problems because of my chemo side-effects: redness, blisters and pain, I can’t write holding a pen for long periods of time. My oncologist has suggested putting protective tap across the fingertips that hold the pen and wearing a white cotton glove over the top to cut down on the friction to other parts of my hand so that I can withstand three hours of writing.

I didn’t want to turn up to the exam and the exam supervisors make a fuss about it so I broached the subject with my lecturers and emailed the  chief examiner to explain the situation.  They now have my details and I will carry the letter from the oncologist confirming what I have told them to the exam so there wont be any problem.

While I was discussing this with my lecturers I explained that I had walked out of one of my first semester exams due to not being able to write and that I needed to wear the glove to prevent the same happening this time and they pressed me to consider going for aeggrotat  passes if I still have difficulties with the exam.

In the first semester exams I only got a B- as my mark for that paper. and I know if I had gone for impaired performance I would have got a much higher mark.  But I decided not to.

Why,  because I need to know what I am capable of now.  I need to know what I am capable of under the influence of painkillers, suffering the side-effects of chemo, fatigue etc.  I want assignment and exam marks based on what I am actually capable of at that moment in time, not what I may or may not have been capable of, if I wasn’t sick or tired or whatever.  If my luck holds and I somehow manage to finish this degree – a four year degree which will take me another 5 years including practicums to finish,  what I need to know is whether or not I am capable of doing the job regardless of what medication, or limitations I have got.

I am not going to get special allowances for being sick, being allowed to make more mistakes than others or whatever when I am actually working in the social work field, so I need to know what I am actually capable of and get the marks I actually earned.

Its the reason I have tried to not ask for extensions for assignments too.  Do I think I have got the marks I could have got if I wasn’t in treatment? No, but they are a reflection of what I am capable of right now.  And when most of my marks have been around the A- or B+ mark I’m happy that I have tried my best regardless.

 

Husbands and rabbit holes

More than slightly morbid blog post.

After hearing my tumor markers had gone back up, thoughts of death have reared their ugly heads again.  Most of the time as I go about my day-to day business, as much as we are looking at control rather than cure and that control will probably have a limited time frame, I push the thoughts of my death to the back of my mind and close the door after them.

Likewise it is a time that OH and I have some very honest discussions about the likely timeframes and what will happen closer to the end.

As much as I hold out some hope for a spontaneous miraculous remission I also acknowledge the reality of the situation and the chances of that remission happening are not as high as the less desirable outcome we are all facing.

I’m glad OH and I can talk about it, both seriously and with touches of very dark humor, and OD and MD are the same.

But one of the things I love about OH is  that he is also opening up to some of his work-mates about the emotional toll it has on him.  He relayed to me that when he was telling one of his work-mates our latest news, she asked him how he felt.  He had replied ” It’s like we are falling down a rabbit hole, with each piece of bad news we fall a bit further down. And we both know that eventually only one of us is going to make it back up”

When he told me that I envisaged us roped together down a hole – me a little further down than him, and I said that to him and I said there will probably come a time when he has to untie the rope and let me go. And climb back to the surface alone.

It’s not that I think it is going to necessarily happen any time soon but with chemo options starting to be in shorter supply and knowing the reality of my situation – I know we have to acknowledge it will happen eventually.  And our family believes it is better to talk about things, even down to things I might like for my funeral while I am able to make those decisions.  If my condition was to deteriorate rapidly and we hadn’t had those discussions, my family wouldn’t know my wishes.  It’s not like I am sitting down and planning my funeral, but more just having the odd conversation when I find a song I might like to be played or so on.  I can express that wish, they go OK, and we move back to more everyday matters.

I made my friend N at university cry, she is an accomplished musician and singer and one of the things I have thought is that I would like her to sing a song at my funeral.  When I told her that, she was very moved but said she also had been thinking a little along the same lines herself, and although I had made her cry we both agreed that whether it happens in 1, 2 or five years time; it was better for us to talk about it now when it doesn’t weigh so heavily on either of us.

As I think of other little things I tell my family or jot them down or if they are something that I see in a newspaper of magazine I will cut them out and put them in a little file I have started, and yes the label reads ‘Jenny’s funeral ideas’.  Some of them will be dismissed closer to the time, but having that file and that discussion now will definitely make it easier on myself and the family if and when we have to plan my funeral for real.

We still haven’t had these conversations with YD and we won’t until we have a more definite time frame. We will tell her the cancer is not likely to go away again, but unless she brings the subject of me dying up, I would rather not broach it with her while there is such an ephemeral time frame and also when I am not ‘acting’ sick.  I need to find some good children’s books, aimed about a 5-year-old level, to help her cope and process when the time comes for us to tell her.

I did warn you this blog post was morbid, but I firmly believe that it is important to acknowledge the reality of what we are dealing with

I am not actually afraid of death itself, I have faith in an afterlife, and when the time comes I hope to go with grace.

I just hope it doesn’t happen too soon.

I’m not strong

The only way I know how to be strong is to know when to admit I’m not.

As a natural introvert I have retreated into myself to deal with the double whammy of my treatment expectations being changed (see the blog posts entitled a week of it and life and chemo )  and the death of two BC friends in the last month.  I shut myself down and did not engage so much in social media: twitter, Facebook or blogging.  I just needed time to process things internally.  Whereas in the past I may have let myself sink into depression or as my husband used to call them ‘blue funk tail spins’, by beating myself up for feeling weak and for feeling sad, I have learnt to allow myself time to feel the sadness but also know that it will end and that I will be fine again.

I have also been quite sick with the flu and I know that hasn’t helped me weather the emotional storm that well either

Allowing myself that time to recover (both emotionally and physically), and also going to counselling at the Cancer Society on Monday and allowing myself to burst into tears about it really helped.  And it helped me with being able to deal with the news I got at my oncology assessment yesterday.

Given that even on the reduced dose of 4 tablets (2000mg) morning and night I am still having major problems with my feet from the side effects of Xeloda they have decided to reduce the dose to 3 tablets (1500mg).  But the biggest news was that the scan that was going to happen before Christmas has now been bought forward to happen in the next 6 weeks because my tumour markers have started to rise again.  This could mean that the Xeloda has already started to lose its effectiveness and that the cancer is growing again.

My tumour markers have always been on the lower side of what can be expected with aggressive metastatic cancer so there is no immediate cause for concern but the fact they have started to rise does probably mean that they will look at changing my chemo.  I do have very few chemo options left – xeloda is the 3rd chemo treatment I’ve tried in 3 years so what I will probably do is still ask if  can have the summer off chemo and start the next chemo when my tumour markers (and tumours) start really impacting on my health,  At the moment the chemo is making me feel sicker than the actual cancer, and if I can feel good for the next few months and not be on chemo it would be good.

I have an assignment due the end of next week and  my uni exams are the 28th of October and 7 th of November so I am not sure how much time I will get to blog before then.

Emotionally and physically I’m not feeling too bad right now so don’t worry about me too much and I will update you as soon as I can about what the next blood tests / scans show.

Reposting: Real Breast Cancer Awareness Part II

I have decided to repost one of my breast cancer awareness post from last year – the parts in italics are editting I have done to bring it up to date for this year.   I also encourage you to read my other posts from last year

Real Breast Cancer Awareness part I

Real Breast Cancer Awareness part III

Real Breast Cancer Awareness part IV warning: this one is one for the ‘too much information’ files and shows both my IBC affected breast and my mastectomy scar

Real Breast Cancer Awareness Part II

How do Breast Cancer fighters / survivors feel?

So much pink in October is also quite hard to for Breast cancer survivors  to handle at times.  While those that have finished treatment and have a good prognosis for a complete ‘cure’ either embrace it or ignore it, for those with a more complicated relationship with breast cancer  it is quite hard to know how to handle all the reminders.

My friend TLA sums it up this way  “I know for myself, I wish I could be on an island the month of Oct and not see anyone. People who wouldn’t even look at me when I was in treatment, let alone do anything to help me, are awash in pink. They care! Really? See I am a care in action person. Now I am the first to say that some care is invisible, like the men and women who told me I was in their daily rosary devotions, something not so visible, but very important. Some care is more visible. But my friends point is that just sticking a ribbon on it, when that is all that is done, only hurts women as it has become a feel good, meaningless symbol of caring.”

I had just been told the cancer had come back at the beginning of  October 2009 and I had to make a conscious decision on how I was going to deal with it.  I chose to take part in some fundraising activities but at the same time it was hard to deal with the advertisements on TV, the pink ribbon sales pitches,  and all the other constant reminders that I had breast cancer.

I am dealing with different news this year having found out in March that my cancer has now gone to my liver which means we are looking at control rather than cure. More about that in my next blog post

Even some of the breast cancer charities themselves get it wrong sometimes.  The  Breast Cancer Research Trust have had two advertising campaigns in recent years that I took offense at.  While I admire their commitment to finding a cure their “Seriously, breast cancer’s not a big deal” in June 2009 really touched a nerve with me and even when they add the tag line “because we are going to find a cure in 10 years “  it didn’t really mollify me.  And then their replacement campaign still pushing the 10 year cure wasn’t much better

You see for people like me, who’s already had one recurrence, or my other friends with recurrent or metastatic breast cancer especially IBC we don’t even know whether we are going to be around in 10 years time   and they also don’t mention that for aggressive breast cancer the ‘cure’ will still involve such life and body altering things as mastectomies and chemotherapy.  No big deal – I think not.

Also they said such things as ‘will find a cure  for 90% of all breast cancers ‘ – ok IBC is less than 5% of breast cancers – do they mean they will find a cure for that or not?

There’s also the ladies that are picked to be the face of breast cancer appeals -always success stories, always so positive about their successful breast cancer journeys so that when people like ‘justenjoyhim’ and ‘whymommy’ try to say something different they are shot down as being cranky or ungrateful when in reality they are dealing with the very real emotions that dealing with a recurrence scare or actual recurrence can bring.

I guess being real isnt a good marketing ploy (yes -I’m being facetious)

I’m usually way more positive than this but its a fact that Breast Cancer (especially if its IBC) is not all cutesy or sexy or  ’happy happy joy joy ‘ as some well meaning fundraisers would portray it. As I was saying to my uni friend AW most of the time I’m positive and try to ignore or play down the more dire possiblities that this disease can mean for me personally but sometimes things happen that make it slap me in the face.

I’m not saying that  Breast Cancer Awareness Month is necessarily a bad thing I’m just saying lets be a little more real with what it actually means

For me personally its turning up to the hospital every three weeks for the foreseeable future to have IV herceptin in the hopes that it will keep me in remission.  And although I was  back  in remission May 2010 I have already had one scare and scans to check recurrence or metastasis – they came back clear – but they want to scan me again in December ‘just to make sure’.  Its having an echocardiogram every few months (next one due the week of my university exams) to make sure that the herceptin that is my ‘cure’ isn’t giving me heart failure.

Its ‘just enjoy him’ worrying about whether elevated tumour markers mean a recurrence, its ‘whymommy’ being too sick and tired from her chemo treatment from her recurrence to play with her young children.

All three of us are now dealing with metastatic disease

Its my friends from Sweet Louise who are all dealing with metastatic cancer.

And especially its my IBC sisters Angela, Roxanne, and Malu who all lost their lives to this disease in the last week

I have lost several more BC sisters in the year in between last October and this, Jen and Michele, being the latest two in the last month.

For all the success stories there are still people suffering and dying from this disease and each one is one too many.

If you see a pink ribbon, remember them – I know I will.