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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

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.

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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

I’m not a star

I named my previous post about the web video series “Video Stars” and have publicised the videos on facebook, twitter and in our local paper.  You can read the online version of the article here – Papakura Courier

I have had a lot of praise as well as people joke that I am famous, and to tell you the truth it makes me feel a little uncomfortable.  I don’t do this sort of thing to build myself up and make myself look good but just because I think it needs to be done.  People need to know that all breast cancer isnt the same, and I am passionate about making that happen.

If you are on Facebook or Google+ you will have seen my update :-                         “Nobody who knows me well is going to be that surprised that I joined the committee of Breast Cancer Aotearoa Coalition last night – these are the people who organised the videos I was in.  They are willing to support me in stuff I want  to do around IBC in New Zealand and I am also doing something constructive for the wider breast cancer community in New Zealand”.

They are a national organisation of volunteers doing things around breast cancer that I really believe in , such as the webvideos.  They act as an umbrella group for  a lot of different breast cancer organisations and are very pro-active.  I feel like I have found a bunch of like-minded people and that with working with them I can achieve some of my own objectives as well around publicizing IBC.

Some people worry about me over-committing myself especially with the level of fatigue I am feeling under treatment, but getting involved with this sort of endeavour, and  likewise my uni studies, makes me feel like I am doing something worthwhile and not just sitting around being a “cancer patient”

The BCAC (Breast Cancer Aotearoa Coalition) committee is aware of my limitations and are just happy to have me onboard with whatever I can give them.  They are particularly interested in the fact I am an avid user of Social Media (Facebook, Twitter, Blogging,  and now Google+)  and even though I still think of myself as somewhat of an amatuer they are interested in my input in those areas.

I am not a star – but I do plan on continuing to be a starter.

 

Empathy vs Sympathy

Subtitle: What I need from my friends and other people

Sub-sub-title: or am I just a stroppy independent b***h?

This post has come about due to discussions I have had with various friends and aquaintances.  As I’ve said in previous posts, I dont like pity or sympathy and think true empathy of my situation only comes from tuning in to how I feel and how I want people to react to me.  I found this quote which sums it up for me

We recognize others as empathic when we feel that they have accurately acted on or somehow acknowledged in stated or unstated fashion our values or motivations, our knowledge, and our skills or competence, but especially as they appear to recognize the significance of our actions in a manner that we can tolerate their being recognized – Wynn Schwartz:

 I need people to recognise that I will be talking a lot to my closer friends and family about my hopes and fears.  I am still getting my head around the whole ‘metastatic cancer’ scenario and what it means for me and I will talk to help me process this.  It does not mean I need anyone to try and jump in and fix it.  Just let me talk and process. 

Maybe I’m selfish but I can’t handle well meaning hands on my arms saying ‘”how are you?” in ‘that’ concerned tone of voice.  I also dont know how to respond to “but  you are looking great” – that one I think is getting to OH as well.  We bumped into a workmate of his who said it and OH’s reply was “yeah, apart from the tumour growing inside her”

My emotions are going all over the place sometimes happy, sometimes sad, sometimes nervous and sometimes annoyed.  I have less patience with percieved ineptitude, or people who aren’t being sincere or people who express overt pity and sympathy.  If they were truly empathetic they would pick up that I really hate that.  I am getting angry easier.  I know this will calm down to a certain extent once I’ve got my head round the situation more, but I can’t guarantee not to bite someone’s head off in the meantime.

I don’t need people to tell me to go try alternative therapies instead of starting on this next chemo regime, which a stranger did the other day. 

 I need my friends and family to just be my friends and family, allowing for my mood swings and wanting to spend time with me.  I want to just have fun spending time with people and not make it all cancer, all the time. 

Most of my class mates at Uni have picked up on the fact that my health has got worse and most of them are judging correctly how I want them to react.  That I need Uni to be a ‘normal’ place for me.  Somewhere I am not a cancer patient.

If I continue down this metastatic track there will come a time when the family and myself may need a lot more ‘hands on’ help but we dont need that right now.  Its part of me needing to feel as independant as possible. 

On the whole people think I am a fairly positive person and that is how I think of myself too.  With metastatic cancer you have a choice – either carry on living your life to the best of your ability around the strictures that treatment may put on you, or curl up in  a corner and wait to die.  I know which one Im choosing.

Thanks to all my family and friends who understand me.  I’ll try not to be too much of a stroppy b***h

 

Real Breast Cancer Awareness Part III

Is Awareness still needed?

Yes, Yes, Yes!!

Although the New Zealand Breast Cancer Foundation includes looking for other symptoms in its breast cancer awareness campaigns now, for many years the message has been “have mammograms and look for lumps.”

As you know if you have been following me on this blog, or facebook, or twitter,  I have used this month to do a little personal breast cancer awareness campaign of my own.  I wore my t-shirts with the captions as seen in my header picture, the ‘no, they’re not real’ and ‘my to-do-list’.  I bought myself another one that said ‘I survived breast cancer and all I got is this lousy t-shirt’  and wore them to my classes and on the train and when I was out and about.  In me doing this it sparked conversations around my journey as a survivor, Inflammatory Breast Cancer,  and Breast Cancer in general and popular misconceptions kept popping up in the conversations.

I am not blaming people because I was guilty of some of these misconceptions myself before being diagnosed.  I’m just saying that I think there needs to be re-education because people aren’t taking any notice of the new awareness campaigns because they think they already know. 

The common misconceptions are as follows:

1) That all breast cancer can be ‘cured’ by finding a lump, having a lumpectomy (or mastectomy if you chose) and chemo and/or radiation and then you’ll be fine.  That if it has spread further than that it’s because you didnt take notice of the lump in time or that it is several years after original diagnosis that it reappears in other organs.

This misconception presumes that all breast cancers are slow growing.  However aggressive breast cancer, IBC included, can grow within weeks and months and by the time a lump, or in the case of IBC – other symptoms, become obvious the cancer has already spread further than the breast.  It is also the case that the lump itself may not grow that big but the cancer will spread to the lymph nodes or further afield. This misconception also places the blame on the breast cancer survivor for their ‘lack of diligence’ in not picking it up sooner.  If you are a fighter/survivor of an aggressive form of Breast Cancer the last thing you need is people making stupid remarks about the fact you should have been more watchful.  When I tell my story of IBC you can just tell perspectives are shifting in peoples minds because I also talk about there are other aggressive forms of breast cancer out there.  “Oh I thought they were all the same!  – that Breast cancer was breast cancer – (and all grew at the same slow speed)” is the general gest of comments from a conversation about this misconception.

2) that it is all about having mammograms and that if you have them when you reach the age of free screening you’ll be fine.

People are making the mistake that mammograms are a preventative tool not a diagnostic tools.  Sorry folks , by the time the mammogram picks up that tiny lump in your breast, you already have cancer.  Having mammograms will not prevent you from having cancer it will just pick it up at an earlier stage than the naked eye or feeling your breast can . 

3) Thats its an older ladies disease.

With all the publicity about the free screening programme for 45 -69 year olds in New Zealand, women are becoming complacent about it not happening to them any younger than that. – I know at 45 I was guilty of that assumption myself ‘that I was just at the early risk stage of having cancer but it happens to ladies much older than me’.  And as I had had a preemptive paid mammogram at the age of 42 – I was going to be fine.  Although 3/4 of the cases of breast cancer occur in women over 50, unfortunately younger premenopausal women’s breast cancer tends to be more aggressive.  Its funny when I tell people that I was 45 at diagnosis, the usual response is “Wow you were really young” but the fact is I am postively ancient compared to those women in their 30’s  I know that have been diagnosed. 

One of the spokespeople that the NZBCF has used this year is Helena McAlpine who was diagnosed at the age of 31, and I think using her as a spokesperson is a good idea as it shows that it doesn’t just happen to older women – our grandmas our aunties our mothers – it can happen to us.

I don’t know what the solution to the apathy to awareness is.  Is it just a case of no matter what we do younger women will still be oblivious to the risks to them?  The trouble is that is young women in fact need to be more aware of their breasts (in a medical awareness way)  – their cancers tend to be faster growing, they dont have the free screening to find lumps before they are obvious to the feel, and it scares me that they possibly wont get help before its too late.  I know the breast cancer campaigns dont want to worry women unduly but my point of view is I would rather be scared than dead. 

I personally would like to see an ad campaign next year that targets younger women, that says as a slogan ‘its not just about lumps’ and really jolts our complacency and preconception that it is only “slow-growing lumps and breast screening when you reach 45”  I know that it is aimed at only approximately 25 % of the possible breast cancer population but to my mind thats the portion that needs the most awareness done now.

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. 

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.

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

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.

Real Breast Cancer Awareness Part I

I have been so busy getting my last university assignments out of the way that I haven’t had a chance to blog as much as I would like so far this month.  I’ve got a lot to say so have decided to break it up into smaller topics

Part I – What is real breast cancer action and awareness?  How can you help?

In America there has been a bit of a backlash amongst my breast cancer friends about “pinkwashing” and also the idea that just by putting a pink ribbon on it whether you be a person or product you are doing enough for breast cancer awareness and supporting people with breast cancer,   and then of course there are the things that are pinked that are just wrong or misguided bad taste.

It’s interesting that here in New Zealand the breast cancer charities seem to have heard that there is a bit of pink fatigue and actively dialled down their pinking this month.  But in doing so they are not necessarily doing me a service.  All the Breast Cancer Action Month’s events seem to have mainly been at the beginning of the month and not a lot is getting media attention.  It makes me sad that something like the WIMA ride didn’t get much publicity, although they raised a substantial amount of money for the NZBCF.  Like wise the Timtam promotion where instead of getting you to buy biscuits they are actively saying donate and we will match it – the money is going towards Breast Cancer Aotearoa Coalition

From the states we get good campaigns such as Puma’s Project Pink which is rewarding with $1 per tweet towards Breast Cancer charity that is voted on by the people taking part.  This is giving power to the people as to which breast cancer charity they will support and letting people do something to raise money that doesnt necessarily mean buying the product.

While both Puma and Timtams (Arnotts) are getting some advertising media mileage out of the campaigns they are not directly profitting from what people are doing to make a donation (although Puma assumedly will make a profit out of selling Project Pink branded gear) and to me this is the key to getting people to donate wisely.  Although it is an American site “Think before you pink”  has some thought provoking questions about how to intelligently back the cause

I’m not saying don’t buy your pink ribbons or donate on Pink Ribbon day but donate more directly or where a significant amount is going to the cause.

Its finding that balance between enough awareness and getting people to donate to what is still a good cause. or using the pink  ribbon arbitrarily to boost sales and giving a tiny or undisclosed sum to Breast Cancer charities

If you want to donate  in New Zealand consider making a direct donation to one of these charities Breast Cancer Aotearoa Coalition, Sweet Louise, or New Zealand Breast Cancer Foundation

Pink October

I wrote this as a comment on another blog but thought I would reiterate my stand on “Pink October” here

“love your analogy of cookies – I guess my grade 3 Her2+++ IBC would be burnt mouldy crumbs. Like Joanne I am glad you mentioned IBC.
I dont like the over commercialisation of breast cancer awareness but I have noticed that the NZBCF is moving away from calling it awareness and have called this ‘Breast Cancer Action Month’ and are targetting raising money to support women with breast cancer and research for a cure and awareness. That is something I can get more behind.
As an IBC fighter/survivor: first diagnosed Aug 2008 remission April 2009, regional recurrence October 2009, and back to remission May 2010, I will wear my ‘ no they’re not real t-shirt – the real ones tried to kill me’ or other similar survivor shirts and go to events to raise awareness of IBC in particular. I will also wear my shirts to my uni course, and talk to people about my fight – A) to remind them that behind all the pinkness there are real people fighting the disease and B) to educate people that you can get breast cancer that doesn’t show up on mammograms and can develop without a lump as IBC is relatively unknown here in New Zealand. I sure didnt know it existed til I got it.”

To reiterate, when I got diagnosed there was no lump in my breast – just threads all through my breast and the nodes in my armpit and above my collarbone were involved .  The only warning I got was an itchy breast 2 weeks before my breast blew up with the course of a day (it looked fine in the morning) to be big red and funny looking very similar to the second picture on this page except even redder and more puffy looking.  I had a slight ache a couple of days before but had put it down to being ‘that time of the month’.  I was stage IIIc at diagnosis which is the closest you can be to metastatic without being Stage IV and I could not have got diagnosed any sooner than I did – unlike a slow growing lump IBC is fast growing and undetectable until you get the physical appearance of symptoms.

No lump , Doesn’t show up on mammograms, still  Breast Cancer!!

I’m a geek!

Some of you may already have known that LOL!!

The title of my blog is “Get Out Gertrude” the subtitle is “My battle with Inflammatory Breast Cancer and rediscovering normality” and I thought I would do a series of little posts about what normality means to me – although as I write this I remember a card OH once gave me that was along the line of ‘front of card’ – “I dont want a nice normal relationship” ‘inside’ “I like ours so much better.”

All this quake business really bought out the inner science geek in me.  I spent hours looking at the data at Geonet and plotting them on Google Earth. At first it was just trying to figure out where the quake and aftershocks were in relation to MD, SB, Bro, etc but along the way I actually realised how much I enjoyed the science side of it and it reminded me how interested I was in the whole earthquake/volcano natural sciences field.  I started following Sciblogs on twitter and generally embraced my inner science geek.  I was showing one of my uni friends S the work I had done tracking the aftershocks and was saying that I am interested in that sort of thing anyway and she turned round and said why on earth was I doing a Social Work degree but  I already know my science geekdom has already been invaluable in navigating my way through the medical jargon that surrounded both YD’s diagnosis of chromosome deletion but my own of Inflammatory Breast Cancer, and I know that is one of the strengths I’ve always brought into my work with other people – that I can understand the jargon and break it down into layman’s terms.

But wait there’s more – that is not my only claim to geekdom – I am also a bit of a language geek.  My children were made fun of at primary school by their peers for knowing big words like facetious and pedantic and using them appropriately – it became a bit of a running joke in our house for a while about whether they were being facetious or pedantic.  I love people who are clever with words such as xkcd .  My love of language hasn’t always shown through on this blog as chemobrain, stress , time constraints and so on often stop me from being as eloquent as I know I can be.

I am also in a small part a computer geek especially around the internet although by true internet/computer geeks I would be considered but a newbie.  But for my age (women of a certain age, hehehehe) and stage in life I am an oddity amongst my real life friends embracing such things as blogging and twitter.  Blank looks are the usual response I get to some comment I make about it.  I was also considered unusual for enjoying computer games from the first time I got a computer, my favourite games turnbased role playing strategy games such as CIV 3 or Heroes of Might and Magic 2.

But all this geekiness is part of who I am and part of the normality of  my past and present and future.  I embrace it and acknowledge that I am and forever will be a Geek.

Sweet Louise

I’ve just joined Sweet Louise this week.  This is a support network and services for woman with secondary or metastatic cancer.  I am both extremely happy and extremely sad to join this group. 

Why did I join when I am in remission again and hoping to stay there? Because I need to meet more women who are living with the same threat level that I am.  I joined the local Breast Cancer support group last year and have not made it to any meetings while I’ve been at Uni this year.  I attended my first meeting in about 8 months last week and was extremely disappointed in the other members attitudes towards me.  The group is a long established group with most of the members having been part of the group for 10 years or so.  They are for the most part early stage survivors.  Some of the group almost seem to actively avoid talking to me – as if aggressiveness of IBC or recurrence is catching or something.  Only three of the ten women that were there actually wanted to know anything about where I was at or even want to talk to me 1 on 1.  One woman that I did talk to  hadn’t known that I had had a recurrence and was still having chemo when I started uni this year.  And as soon as I bought it up she changed the subject… I came away from that meeting feeling more alone than ever. 

 My friends and family are wonderful and the IBC international support network on the internet  I belong to are equally supportive… but I long to meet more women face to face that are in the same place that I am in – that live under the same “threat level”.   And that is what Sweet Louise will bring me…. it doesn’t mean that I need to talk about it all the time or make it all about me… but that if it comes up in conversation I dont need to shy away from it either.  This is the bit that makes me very happy about joining.

The sad bit is that there was no question mark about me joining this group – If you self refer or get referred by the oncology department, you are not accepted unless someone in the medical profession has verified you have metastatic cancer.  Ever since I have had my recurrence I have been psychologically comforting myelf with “it’s just a regional recurrence – it’s not metastatic!”  and when my cancer society nurse suggested that I join ‘Sweet Louise’ at the diagnosis of my recurrence I was very sure I didn’t really fit the criteria for belonging. But deep down I have known that the way they are treating me, herceptin indefinitely – scans every 3 months is exactly the same as if it had spread to my other organs and they had got me back in remission and that medically I was regarded as metastatic  because the nodes that popped up in the recurrence hadnt been involved first time round.

I am going to go to my first meeting next Friday.  I’ll let you know how that goes.

The other interesting group I have been invited to join is ‘Mothers with Cancer’   this is a collective of women mainly in America who blog about their cancer journeys and the impacts it has on their families and their role as mothers.  Most of them have individual blogs like I have ‘Get Out Gertrude’ but they also post on the collective one.  I have followed this blog ever since diagnosis,  although my children are older and have now left home, to see how younger kids have managed or been managed to deal with their mothers illness because although YD is now 21, her functioning age is so much younger, and the same things fit with her that would fit with your average 5-8 year old. 

I haven’t done my first posts over there yet – that will probably happen in the next week or two.  I have to write an introduction to myself and tell my story thus far in a couple of paragraphs for introduction/profile page and my posts (stories)  there will be a mixture of posts that will appear on “Get Out Gertrude” too (cross- posted) and posts that are unique to the Mothers with Cancer blog. 

I’ll post my first post there on here as well so you can see it.

Exasperation vs Aspiration

The last post I wrote was written in exasperation because of the daunting thought of them doing yet more  tests to check whether my latest aches and pains are another recurrence. 

 There were two other occurences this week that I found questioned my levels of exasperation vs aspiration.  I saw our GP (family doctor ) ‘BC’ on Monday for the first time in quite a few months and he heard for the first time that I was going to Uni full-time this year.  He has been my GP since I first moved to this town when I was 19 and he was just starting out in his Dads family practise as a GP so we have known each other for close to 30 years now and he has seen me through all my pregnancies and has seen me when I was my most stressed out when YD was continually sick etc when she was younger.  His attitude was one of disbelief that I wouldn’t be using this time with YD having  left home and myself being in remission to just relax.  I had exactly the same reaction to the news I was at uni from a local shopkeeper whose shop I have frequented and that I have become friendly with for about the same length of time the following day.  These two people have seen me at my most down, most stressed over the past 20-30 years and can’t believe that I want to put my energy into continuing to help others by doing a Bachelor of Social Work (majoring in Health Social Work). 

I didn’t have time to explain it to the shopkeeper as he had other customers waiting but I did go into it with more depth with ‘BC’ and he did see my point of view.  I want to do what I did with other parents on a more informal basis in the past and apply it to the wider health field especially now I have had my own health issues and have seen other people in hospital overwhelmed by the professional jargon and navigating the ‘system’ etc and I see that is where my strength lies as a Social Worker. 

 The other side of me studying is that in fact I am doing something for myself in doing it,  it gives me a focus, an aspiration, a feeling that I am doing something worthwhile instead of just sitting around waiting for the cancer to come back.  That if I get through the next few years without another recurrence I will come out of my degree with something useful that I can then go on to use in my life because if the cancer doesn’t come back in the next few years the chances of it ever coming back rapidly diminish again so I can get on with having a Social Work career.  Even if the cancer does come back and I need to have regular treatment, it doesn’t necessarily mean I am going to die of it anytime soon and I could be in and out of treatment managing cancer as a more chronic condition for 15-20 years.  I cannot spend all that time just being a ‘cancer patient’.

I have had the good news today that 3 other woman with IBC , two just out of initial treatment, one with a recurrence after 3 years have reached the land of remission (or NED as they call it in the States – No Evidence of Disease) so despite my exasperation I think I’ll stick with my aspirations.

I ASPIRE TO DREAM, I ASPIRE TO HOPE, I ASPIRE TO LIVE !!

I have learnt…..

I’m down to my last two exams of my first semester of my four-year degree (Bachelor of Social Work)

I have been a busy little study bee but thought I would destress by having a break and writing a blog post of what I have learnt in the past few months

I have learnt:  ….

 – that whatever class you take on the day after chemo, you are never going to absorb as much as in your other classes.  You will hear a theory or concept and go: “Was I there for that lecture – I don’t remember anything about it.”

 – that no matter how organised you are at the beginning of the semester if you don’t put some proper structure into the way you organise your readings/notes/time – once the assignment due dates came rolling round everything else falls to pieces

 – if you are in treatment for half the semester with chemo remember from the last time how you crash energy-wise when it finishes.  You stop running on adrenalin and you are tired and more prone to get sick etc

 – that you can achieve regardless of these problems as long as you give yourself enough time and space to concentrate

 – that you are naturally a group organiser – organising a Facebook group and contact list for the class within the first few weeks.

 – that if you put yourself out there, being as authentic as possible people will respond to that and you will make a lot of new friends

 – that you will be so busy with Uni that you will forget to make plans with your other friends – sorry J and S etc, I promise I will try better next semester

 – that you also need to structure some me time into the timetable, and some us time for me and OH.

 – that  its ok to say no to YD and put yourself first

– that you need to make some time for physical exercise – sitting in lecture rooms or in the library, on trains and sitting at home doing assignments does not keep you fit.  Working up and down the stairs at Uni helps but all the sitting doesn’t and not only does it make your general fitness worse but it increases the severity of your lymphodema as well.

 – to remember key phrases for exams make up silly things for them.  Using Hitchhikers Guide to the Galaxy to help remember something about ethics. In the HH2G ’42’ was the answer to the question of life, the universe and everything,  and one of the things I want to use in the exam is that ‘ in order to learn about safe social work practice we need to explore our ideas and beliefs about right and wrong, good and bad, life and death and basically the meaning of life and everything” so if I remember 42 I should be sweet – LOL

– be realistic about study for exam – realise when your eyes are glazing over and you are not absorbing/understanding anything.  Take short breaks when you need them but set time limits to both study and breaks otherwise you can just get sidetracked.

The two main things I have learnt this semester is 

 –  that this semester has just reaffirmed Social Work is what I should be doing

 – and that I am going to be ok whatever happens with Gertrude, that I am now in a place where although the fear of recurrence is still there, it has no place in my everyday life.

 

 

Psychological analysis?

Subtitled:  Stray thoughts from a psyched out psyche!!

Just a collection of thoughts that have popped into my head with doing my study for my Psychology exam that is on this coming Thursday morning

Extroversion vs Introversion – in our little study group N said she would like to meet an introvert and was surprised when I said she was sitting next to one i.e. me!  Just because I’m outwardly seeming to be outgoing and friendly doesnt necessarily mean I’m an extrovert it just means I push myself to make friends and be friendly and both having YD have special  needs and my own IBC battle have made me more assertive.  And we talked about how most people felt like I stated in my post   that I felt at high school – different etc, but I said the difference is that extroverts will seek to make more friends when they feel like that because they need validation from other people where introverts seek it from themselves.

My blog is both a way of me both processing the information for my own benefit and a tool to allow me not to have to constantly tell everyone everything.  Extroverts blog too but they do it to get the validation and input from others.  I think it would be interesting to know where bloggers think they sit on the introversion/extroversion scale.

Was on the phone last night – talking to N and AE about our study and several amusing thoughts popped into my head:-

What is it about the fact that my talking on the phone about psych disturbed OH so he couldnt do his work on his computer and he stopped.  If he had asked me to move to another room that would have negative reinforcement of him being able to work as he would have removed the aversive stimuli (me talking) and got a positive result (being able to work).  As it is he punished himself by stopping working.

Does the fact he threatened to hit me over the head (joking) constitute him punishing me?

When I was talking on the phone to N about psychological disorders and discussing schizophrenia, OH was walking around muttering “I havent got schizophrenia” – was he having auditory hallucinations (voices in his head) suggesting he had?

On facebook I posed the question “wonders is there such a thing as psyched-down – definitely not psyched-up for psychology exam on Thursday” – one of the comment answers was they think the antonym of psyched-up could be psyched-out not psyched-down so thanks RC for the contribution towards the subtitle of this blog post

As much as these stray thoughts have been in fun and amusing I actually think they will help me in the exam

And in the interests of being honest and authentic I will tell you about the “brain fart”  that I had in the sociology exam on Tuesday.

The exam is worth 50% of our final grade and so the marks for the exam are out of 50 – the last section was identifying quotes – author, subject how we understand their viewpoint sociologically… we had to pick 3 out of 11 and each was worth 5 marks – when I looked at that section I thought “oh good i know most of these quotations” – I knew 10 out of 11 of them but could not decide which ones to do so by the time I got to that section I did the first two and then for some stupid reason thought I had finished the exam and did not do the third one – I threw away 5 marks just like that.  I am hoping I still did well enough to pass the  exam but even if I didnt as long as I get the points to pass the course in total then I’ll be ok. I’ve put it down as a learning experience.   I don’t think I will ever make the same mistake in another exam.

Anyway back to errand running and study – trying to balance study with making sure I have things organised for Samoa

being honest and authentic.

Just Enjoy Him on her blog “blogging is powerful” wrote some word that exactly mirrored what I wanted to say this week to and as she expressed better than I could, I have quoted her here –

My latest favorite quote is this one:

If you ask me what I came to life to do, I will tell you: I came to live out loud.
~ Emile Zola

Blogging is, in a sense, living out loud. Being honest about ourselves — our strengths and flaws — is living out loud. Being open to the ideas of others is, I think, living out loud. Stating who we are, even if it’s only at that moment in time, is living out loud.

Living out loud is sometimes scary, but I wouldn’t have it any other way. It’s the only way I know to live an honest, authentic life which is the only way that I know to get some peace in my life.

I find I’m also drawn to people who live out loud, who are honest and authentic and allow themselves to be vulnerable, no matter what others might think of them. I’ve met some of the biggest Live Out Loud people via blogging.

Yes, blogging is powerful. It’s a life — or, part of a life, anyways — lived out loud, the only way I know how to live anymore.

She is another woman who like me has had to face IBC – and there is something about facing one’s own mortality that wakes you up to the fact that you need to live life more authentically.

This blog started as purely a way to let people know what was happening with me and my treatments –  ‘My battle with Gertrude’ but along the way it has become also a way of me being more honest and open about how dealing with ‘Gertrude’ has made me think and feel.

It may surprise some of you to know that at high school I was very quiet, shy and reserved.  I felt very much an outsider – that I didnt fit the mold of all the other girls.  Some people thought I was aloof or a bit stand-offish but in reality it was because I didnt think I fitted in… and I spent a lot of years beating myself up for being ‘different’.  My family tagged me the emotional/temperamental one and so for many years I was very wary about letting my feelings out.  It took a long time for me to realise that by talking about my feelings and acknowledging them instead of bottling them up was the way to live a better life.

Two things happened since I last wrote a post that very much validated this new view of life I have.  One of them is  the very strange coincidence that one of the people I was quoting for one of my University assignments turned out to be one of my first boyfriends -as I explained to him “it was all a bit of innocent fun – procrastinating over doing my assignment and having seen your name in the text book – thinking to myself “wouldn’t it be hilarious if it was the same  person  I knew” – oh just for shits and giggles I’ll type in “____  _____ health social work” and see what happens – oh my god it is the one I know!!”   This guy I “went round” with when I was 14 – it was all very sweet and innocent but I felt like we had had a real connection.  I wouldn’t necessarily say he was my first love but he was someone really special to me, but all of a sudden he didn’t want to hang out with me anymore and I never knew why.  We became friends ‘sort of’ again when we were in our last year of school (when I was 17 – by then I had had other boyfriends and was with what could be termed my first more serious one). Now I hadn’t seen him for approximately 30 years when I made contact with him last week by email.  I had debated whether or not to email him because I would have to explain why I starting to do a Bachelor of Social Work at this stage of my life – i.e “oh by the way my youngest daughters got special needs and I’ve just been dealing with breast cancer” is not something you want to write in an initial email.  Oh and just in case you are wondering OH knows all about this correspondence.  Anyway he wrote back so I bit the bullet and told him why I was doing social work and what had been going on in my life and I admitted that I had thought about not telling him or not emailing him because I knew I would have to tell him – anyway the upshot of the fact that I had been honest with him was that he was honest with me back and said “oh by the way this is what was happening with me in highschool”.  So its a bit weird but I’ve got closure on something that happened over 30 years ago and I have my friend again.  The old me would never have been bold enough to email him but I am so glad I did. Thank you D!

The other thing that happened was that Bro was up visiting this weekend.  We had gone out to dinner with him and his wife, SisM and SisMOH, and niece S and her partner J, OD and her R and over dinner I had a conversation with SisMOH about how sometimes he has read my blog and thought that I have been very honest and authentic and at times he’s thought “hey yeah she’s right about that” and it is stuff people dont tend to say out loud too often.  The honesty theme carried over into today when we went out for a coffee/lunch with Bro and wife R.  We started talking about family and we got onto the subject of how we got on with our father (who died in 2001).  I loved my dad but I didn’t like/respect  him very much and for the first time today I actually said to one of the family how much I resented being labelled the temperamental one etc growing up when Dad had more problems than I did.  Its the first time I have said that out loud to someone other than OH .

Its really is liberating living a more honest, authentic life – I just wish I hadn’t needed Gertrude to come into it to fully realise it.

Stalker update

Although it appeared for a while that my pulling the ‘big C’ card had made the guy back off – after a few days I started getting the odd “heya”s and “how are u?”s. I ignored all of them although the one he sent two weekends ago that said “hi beautiful” had me and OH in hysterics as at the time I got it I was in bed with the flu, looking sick with my flannelette pjs  on – only one boob and without my top partial dental plate in (i.e. missing my four front teeth).  I was tempted to send him a pxt of just how unbeautiful I was at that particular point in time but didnt want a photo of me out there looking like that. 

I had hoped by continuing to ignore he would eventually lose interest and get bored enough to leave me alone. However this last week he sent me a more explicit text that I am not going to repeat on here and I thought I can ignore the “heya”s and the “how are u” and the “good mornings” but I do not want to look at my phone and read stuff like that so I rung my cell phone provider and got them to deal with it – they have given him a warning and if he continues to get in touch with me they will report him to the police and disconnect him.

All in all this has been a very weird experience and has made me realise there are some very sad people out there.