• Pages

  • comments

    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
  • Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 59 other followers

  • visitors

  • SUSAN’S ARMY

    No Princess Alone button

“Cause I’ve had the time of my life…” – a celebration of Mum’s schooling era

As you will know, if you’ve been reading for a while, three years ago Mum started a Bachelor of Social Work with the University of Auckland. She always knew that there would be a solid chance that she would not finish it – studies show a 25-50% survival rate (and that’s survival, not cure) after diagnosis of IBC. As it turns out, we held her funeral on her fourth cancerversary (did not realise that until I was typing this) and at that stage she was just a few credits short of being able to gain her diploma. Sad, yes, but I know that Mum would not have traded that time for anything in the world.

Her close friends A, N and M from the course, along with her lecturer J and others campaigned to  give her some recognition for what she had managed to achieve in her course. And achieve she did – this is a woman who, during active treatment, was regularly gaining As and A+s. This is the woman who would have liked to gain a PhD and lecture herself. As it got to the end of last semester, however, she knew that she wouldn’t return. So on Wednesday the 27th of July (the week before she passed), Mum had her own little graduation of sorts, where she was declared “QBE” or qualified by experience. She wrote a short post on how much her “Mixed Nuts” classmates had meant to her here.

What I don’t know whether people realise is exactly how much it meant to her. She had photos and film of the event and on Monday the 30th, my first “task” of the day was to sit down and watch them. She was so proud of what she had achieved and really overwhelmed and humbled by all the beautiful things that people had said. We discussed how it is possible for anyone to graduate, and walk across the stage with hundreds of others, but it takes being pretty special for people to throw a “graduation” of your very own. We talked about how much she must have meant to everyone to have a certificate signed by every one of her lecturers.  Why wouldn’t you be proud?

Mum had two goals once her cancer had made it to the “control, not cure” phase: make it to my (OD’s) wedding and make it to her fiftieth birthday. The night before she died, she said that she was satisfied. The uni celebration and the visits she had had from friends had made her feel so loved and appreciated that she didn’t need the big event, especially if she had to plan it to happen in advance of the actual date. As she put it “You don’t usually get to hear the nice things people say about you before your funeral”.

She’d planned to post this second post last week – showing her certificate with blanks on it to protect the privacy of her lecturers. It is the least I can do to post this here and honour that wish.

We are so proud of you Mum.

To ‘Mixed Nuts’

“Mixed Nuts” is the facebook group we created for our year of the BSW degree

To my dear ‘Mixed Nuts’ family

You are all so diverse and I think mixed nuts was a great name for our group representing the unique ‘flavours’ we have all bought to the group

I just want you to know how much yesterday meant to me and I was so glad so many of you turned and said such lovely things about me… I felt so much love in that room.

my lovely gifts and cards

One thing I had wished I had said last night that I didn’t think about until I was talking to V at the end was  that you all indicated that you were all so amazed ‘that I had kept coming  to Uni with  everything else that was going on in my life’.

What you don’t realize is that it was for my own sanity.  I had my oldest daughter when I was 22 and had my youngest when I was 26.  When my youngest (YD) was born with a chromosome deletion my identity became first and foremost ‘YD’s Mum’.   When your child with a disability gets a label so do you… especially if you try to be assertive and get the services for your child that they need.  YD left home 8 months before I was first diagnosed with Inflammatory Breast Cancer, one of the rarest but the most aggressive forms of Breast Cancer so I went from YD’s ‘Mum’ to the new ‘Label’ of ‘ A Cancer Patient’ in very quick succession.  University has been the first time in many years where I have been Jenny, a university student and recognised as myself rather than ‘the Mum’ or ‘ the patient’ and that has saved my sanity in this journey I have been taking.  Thank you all for seeing me as Jenny first and foremost, even though those other labels were still there they were not the most prominent one.

Thank you again for showing the love and being my family the past 2-3 years.  Go well and I am sure you are all going to be absolutely amazing Social Workers

Love to you all

Jenny

bits and bobs

A couple of things that didnt fit with the topics of the last two blog posts – not sure they deserve a blog post of their own but if I dont write them now I will forget.  Damn that chemo brain!

Firstly – I got my results back for my semester 1 papers.  I got an A for  my ‘Law’ paper that was all internally assessed, and a B- for the ‘Family’ paper which I will take as my Drs advice had been not to sit the exam for that paper (because of having a chest infection on top of chemo side effects), I didn’t finish all the questions as the Xeloda made my hand sensitive to the pen rubbing against my hand and fingers and I could only manage to write for 2 out of the 3 hours allocated for the exam and ended up leaving one whole question unanswered.  As I said in previous post discussing this,  I could have gone for compassionate marking but I didn’t want to go through the stress of organising that, so I’ll take my B- and less stress – it is still a pass.

I start Uni again this coming week but miss the first class for one of my papers and the second of the other due to YD’s trip.  Having to fit it round chemoscans and uni made this the only time we could go as any later would start impinging on assignments and exams

….and wouldn’t you know it when I started writing I forgot what the other things were that I wanted to write about.  This just shows how insidious chemobrain/brain fog is – I will edit this post later if I remember the other topics

Not doing what I’m told

I got another cold this week.  My blood counts are falling slightly but my infection fighting white blood cells are still within the normal level so thank goodness I didn’t end up having to go to my old haunts Acute Oncology and ward 64.  It started off as a head cold earlier in the week and by Wednesday had moved to my chest, OH and MD have now caught the same bug so are not happy with me.

Because I had my exam on Thursday I thought it best to go to the doctors on Wednesday,  Dr BC, our GP, was not happy with me still intending to go and do my exam the next day.  The hassle of trying to get an aeggrotat pass or compassionate marking though meant going to the exam was the less stressful thing to do.  I didn’t remember a lot of details from my studying but think I have done enough to pass the paper.  The exam was worth 50 marks with 1 compulsory question and then a choice of any 4 out of 6 optional questions.  Looking at the exam I knew enough to answer 3 of the optional questions and thought if I had time I would come back and hope that the answers to a fourth question would come to me.  I didnt do a fourth question.  Not only would my brain not cooperate but the sensitivity from the xeloda made my hand susceptible to being rubbed by the constant writing from the pen.   Writing constantly for 2 hours had actually created a very sore spot on the web of skin between my thumb and index finger and I knew if I kept writing it would  actually blister – it is still sore today (2 days later).  I feel like I let myself down a bit by not finishing the exam properly and I know if I asked for compassionate marking they would give it but I am hopeful I will get enough marks to pass the paper regardless.  I will have to wait a couple of weeks for the marks so it will be interesting to see what I got.

After the exam I had the choice of making my way home or staying and hanging out with my classmates to celebrate the end of semester.  The judicious use of ‘cold and flu tablets’ meant my head although fuzzy was still functional  Again I did what I probably shouldn’t have and decided to spend some time with my friends.  After a shared afternoon tea we went 10 pin bowling, another something I probably shouldn’t have done, as it is using my lymphodema affected right arm.  I was wearing my lymphodema sleeve so I decided to risk it, knowing that I would have to do extra lymphodema treatment to my arm to make up for it.  Sometimes you just have to do things, knowing the risks and being prepared for them.  Bowling also exacerbated the sensitivity on the fingertips of my index and middle fingers and they are still a bit tender today.  The other issue is that because of the stance you take for bowling my xeloda sensitive feet also decided to play up.  I was wearing my comfortable shoes not the bowling ones but I still got blisters on the balls of my feet and have been barely able to walk the last two days.

Such was the price I paid for being naughty – but if I had the choice I would make the same decision again.  It was a fun afternoon doing something that I have not done for a number of years and one thing that dealing with ‘Gertrude’ has made me realise is that I need to grasp those opportunites when they present themselves.

As usual I am still waiting for scans to be scheduled – I get so frustrated with the scheduling department of Middlemore radiology.  they jsut dont seem to get their act together to give timely appointments.  Dr H has given them a time frame that ends next Friday so if I dont hear anything by Monday or Tuesday i will be ringing up.  I resent the fact that on top of dealing with my treatment I have to chase up appoointments that should have already been scheduled.  I know they are a busy department but their scheduling system leaves a lot to be desired.

Editted: the scan appointment came in the post today – scan on Tuesday. Glad Ive got appointment but still dont like that they leave it so long to schedule and then give you virtually no notice.  Just as well I havent got exam or anything else on Tuesday

My cold is gradually getting better, I can feel it lifting off my chest with the help of the antibiotics and if it wasnt for my feet I would probably be much more active today.  Hopefully in a couple of days both my cold and my blisters will have resolved themselves and I’ll be able to get out and enjoy myself.  Although I am getting out tomorrow to visit niece S.  I think I will have to get OD to drive though.

P.S I had thought about wearing my ‘ I have chemobrain what’s your excuse?’ tshirt ( as shown in my  blog header) to my exam to psych out all my classmates but decided to be nice 😀

Bobbling

That was actually the term my oncologist used at my appointment on Wednesday to check my progress and give me the next round of xeloda tablets. You’ve got to love it when they use real ‘medical’ terms like that.

It was in reference to my CA 15-3 tumour markers in my blood – with the first two cycles my tumour markers dropped rapidly – the blood test for my third cycle shows it has basically stayed the same.  Dr H. says that as we get closer to the normal range (<30 – I’m currently in the 40s) it is quite often the case that the results will start ‘bobbling’ – i.e go up and down but not fall further than below 40.

He says that is why it is so important to do another scan, because even though my tumour markers are low they are not a true indication necessarily of what is happening.  My tumour markers have always been low even with widespread cancer in my lymph nodes the first time. 

So we live in hope that this next scan – which was ordered after my second round but still not scheduled ( which he has now given them a specific time frame – that it must be done in the next two weeks) will show that the xeloda is working on the tumour in my liver and that nothing else is showing up anywhere else.

He has given the go-ahead for us to book the Dreamworld trip but has warned that depending on what the scan shows I may have to cancel my ticket at the last minute.  but he agreed that it was better to get everything booked now.  He was pleased that I had thought things through and tried to arrange it for the week I am off Xeloda at the end of July.  So all going to plan we, (Myself, OH, MD and YD) will be in Queensland from 19th – 26th of July arriving back just in time for my next oncology appointment on the 27th to start my 6th cycle of xeloda. 

If the scan shows something that necessitates a possible change of chemo we will do that in August.

Going at this time does mean I miss the 1st class for one of my second semester papers and the 2nd class of the other but I can afford to miss a class then, where as later in the semester it becomes harder when assignment due dates etc have to be taken into account.

Bobbling sort of describes my life in general at the moment too.  I have some good days where I feel ‘normal’ and energetic and get things done like Wednesday (onc appointment then staying in to do some study at Uni and pick up an assignment -B+ for the ‘family violence’ assignment I had struggled with in this post) Thursday (doing 3 loads of laundry before going out to lunch with a friend – thanks JMJ) Friday (visiting travel agents and getting this trip organised) and some days where I struggle (Tuesday tired and forgot completely about a lunch date with AW after her exam) Yesterday after sleeping 11 hours of fractured sleep between 8.30pm Friday and 11.30am Saturday (got woken up by MD at 10pm and didn’t get back to sleep til 1am, then had to get up for tablets but only stayed up for an hour – long enough to eat breakfast and have tablets and went straight back to sleep) all I wanted to do was sleep the rest of the day too – it’s quite scary being that tired/chemo-fatigued.

Today is a better day, what a pity I have to spend some of it studying for my exam on Thursday.  I know I could apply for compassionate marking or an aegrotat pass and get a passmark for the paper as I have already got an A- and a B+ in the two assignments worth 50% of the paper but I feel I should do the exam.  I want to pass the papers and know that even chemo-impaired I gave it my best shot.  I should find out soon what my marks are for my other paper that was totally internally assessed – I’m just waiting on one last assignment mark for that.

I have to say I am looking forward to the time after Thursday.  No worries about Uni or anything until the 18th July.  I might actually have the time and energy to catch up on  a few other things 🙂

 

 

 

Ok – enough of the whining

I admit the last two posts have made me feel like a right ‘moaning minnie’.  I let fatigue, frustration, and ‘female functions’ get the best of me, and I don’t like the person I turn into when I’m like that. 

I don’t like wasting my time and energy feeling like that, but sometimes I’m just too tired to stop myself.

Writing about it on the blog helps me to let it go though, so every so often I am afraid I am going to subject you to some venting of what’s in my head.  (as I wrote that I got a visual of me with my head blowing up -face bright red and steam coming out my ears)

Yesterday was a quiet day, I went out with OH for a short time, but had to cut it short as I felt a little woozy.  I rested the remainder of the day and went to bed at the very early hour (for me) of 8.30pm and slept til 6.30am this morning.  I could have slept longer but I have to get up to have breakfast and my morning chemo pills.

This coming week is the last classes for this semester at Uni and then I have approximately 3 weeks before one exam for one of my papers (Whanau-Family-Aiga Practice). The other is totally internally asssessed by assignments and quizzes (Law and the State in Social Work)  After my exam I have approximately a month before the next semester starts and I know I will make use of this time both resting and also trying to get some gentle exercise to build up my fitness.(and hopefully fitting in that trip to Dreamworld with YD).

The other thing I may be fitting in, in the next couple of months, is around the video interview  I did for Breast Cancer Aotearoa Coalition (BCAC) – they are launching the video series at the  beginning of July where my story will be edited and put with others to tell the stories of diagnoses, treatment, emotional impact etc.  I have been asked if I will be one of the ‘media faces’ for the launch .  And of course I have said ‘YES!’.  I don’t know exactly how much this will entail but you all can say I knew her before she was ‘famous’ LOL!!  😀 ( as I was writng this post – the BCAC comms person has just rung to talk to me about being included  in the press releases she is putting together)

Talking about being famous – not that I am 🙂 – I have satisfied my ‘inner geek’ by adding a couple of different statistic counters to my blog.  WordPress has its own counter but tends to count page visits so gives me an inflated total of actual visitors.  I have added Clustrmap – just because its pretty – and gives me a visual of where my readers come from. If you click on the little map on the right it will  give you a bigger map.  Thanks to my friendships with other IBC or BC people I actually have more American readers than NZers.  Statcounter (the purple numeric  counter under the map ) breaks down the statistics even more and tells me how many repeat visitors and new visitors I have.  All of this intrigues me, I didn’t write to be read by other than my family and friends to start with,  but it is nice knowing that what I write is striking a chord with other people all over the world from me sitting here in New Zealand.

Active achievement

Just so you don’t think I have just been sitting around moping the last two weeks after the last two posts, I thought I would do a quick blog post before getting going on errands and assignments.

Even with the chemo side effects, I have managed to get to Uni every day that I should, I’ve got my assignments all in on time, including working with a group for a ‘Law and the State in Social Work’ in which I took on the task of formatting and finalising the final submission, as well as doing my analysis of an individual Act.  I chose the easier Act as I didn’t know for sure how the chemo would effect me and wanted to make sure I could be a constructive and useful part of the group never-the-less.  So that is why I volunteered to do the wrap up work, also it’s something I have done for years, desktop publishing of newsletters and other things has meant I am good at getting the formatting done fast and making sure it looks good and is cohesive. 

In regards to Uni also, even though studying and assignments wear me out more,  I have kept achieving the sort of marks I can be very proud of.  So far an ‘A-‘ and an ‘A+’ in the two assignments I’ve got back and consistent high marks in the weekly quizzes in our ‘Law’ paper.  So I’m feeling like I am really achieving something other  than ‘just’ being a ‘cancer patient’.

I ‘may’ have spent some time on facebook as well.  (Guilty admission – getting slightly addicted to a new ‘hidden object’ game)

I’ve gone out and about doing other activities too.  The latest of which  was a ‘date night’ to the movies with OH to see ‘ Source Code’.  Very good movie and I can recommend watching it if you liked ‘Inception’.

Sometimes what I write here will make out that my life is much more miserable than it actually is.  That is partly because I use this blog to process things so that when I go out into the world I can do so with a smile on my face and a spring in my step.  Which is what I will be doing as soon as I’ve published this post.  😀

Achieving things

 

Following on from my very busy week last week – avoiding the need to do my University assignment by being out and about for most of the week then having a day of rest and recuperation.  I spent most of the rest of the long Easter Weekend reading, researching and writing the assignment that was due yesterday (Wednesday).

Achievement #1: I’m proud to say that for both my assignments due since the news of my metastasis were confirmed, they have been handed on time,  I haven’t needed to ask for extensions although the lecturers would probably have given me one, and I feel I have done a fairly competent job with them both as well.  I know my brain isn’t working as clearly or to the intellectual extent it used to, but then it didn’t last year either, and I managed to pass all my papers.   I am about to get my mark back for the one that was due a few days after I got the definitive news and it will be interesting to see what marks I achieved given that my mind was still darting all over the place.

Achievement #2: I finished my first two week course of Xeloda yesterday – having my last 5 pills last night.  I consider that another achievement as well.  Even though the side effects got a little more pronounced over the weekend and I was up most of Saturday night with abdominal cramps and slight diarrhea, they were still manageable.  If it remains only one night out of the fortnight that it gets so bad I can’t sleep, then that is able to be coped with.   I do recognize  that the second cycle will give me a more realistic idea of the side effects as this cycle was more of a gradual build up of the toxicity.  On a smaller note of achievement I managed to have a slight sleep in this morning and enjoy the luxury of not having to have breakfast by a certain time due to the tablet timetable.  I now have a week off before seeing Dr H again next Wednesday to get the next cycle’s worth – another 140 tablets.

Yay!! an empty box

Achievement #3: Today I submitted two short stories to be included in a collection that is going to be published as a book.  All the contributors are women with secondary (metastatic) breast cancer.  I have until the beginning of June to submit other stories, but they will probably only pick one from each contributor.  I’m quite excited about being a part of this project.  I’ll let you know when and if I am going to be a ‘published author’ as well as a blogger.

Exam results

Just a very quick note to say despite all my fatigue I managed to pass all my university exams went into them with a A+ (Lifespan Development), A (Tongan),  A-(Treaty of Waitangi), and a B- (Professional Communications Skills) and finished up with final grades respectively of 3A and a B so Im happy with that.  I haven’t had much chance to relax yet with everything else that has been going on but the energy I have for other things now shows just how draining doing a full time course at uni was.  Being so mentally active left me with no energy to be physically active.

Decisions

Last week I had my oncology assessment to ok my next few rounds of herceptin.   My heart function is still holding very well (for those of you who know what I’m talking about my LVEF is holding steady at 64) so they have no concerns about continuing with the herceptin at this time.  They still want to do another CT scan before Christmas just to check on things so I am awaiting an appointment for that.

I talked to them about my increasing lethargy and fatigue and they said it wasn’t surprising given to all intents and purposes I have been in treatment for over two years and they said although herceptin doesnt have the same side effects as the more heavyduty chemos it is treatment all the same and even if it isn’t affecting my heart function levels it can still be having an effect on my energy levels.

I told them what decision I had come to about my university studies.  My degree is a four year full time degree and I have done the first year full time but have gradually been getting more and more fatigued as the year goes on – some of which is natural study fatigue but is compounded by treatment fatigue.  What I have decided to do is  drop back to part time for the next two years – that is do my 2nd year papers over a period of two years and concentrate a little bit more on my physical health, fitness and energy levels.  I have been using all my energy this year us on mental, intellectual energy and have had no energy left to try and get exercise etc.  My oncology registrar summed it up by saying by dropping back to part time I will be giving my body both time to rest and time to exercise.  She said trying to add more exercise on top of a fulltime schedule was just going to make me more fatigued.  She also agreed with my assessment that even if I worked on my health and fitness over the summer break (3 months) it wasnt going to give me the long term fitness that I need, where as working on it slowly over the next two years will set me up much better for being fitter and healthy going into the 3rd and 4th year full time study including 2 3-month full time practicuums. 

We also discussed that the next two years are the danger time for another recurrence but if I am doing only part time study  then even if something does pop back up I can probably do both study and treatment.

I also had a meeting with the lecturer that was acting as our academic advisor for our first year.  He said the university staff see a lot of potential in me as a Social Worker and anything they can do to help me achieve my degree, they will do.  That was lovely to hear but I did end up bursting into tears when talking to him because in some ways I do feel like I’m letting myself down by dropping back to part-time and frustrated that, even though I know I am making the right decision for me that I can’t do it full-time and even though I am in remission, ‘Gertrude’ is still putting limits on my life.

One of the things that really made me realise that I needed to drop back to part-time was my relationship with YD.  Even though she no longer lives at home I usually spent Sundays with her, usually  every second Sunday.  As the year has gone on and the fatigue got worse I started resenting having to spend time with her because I was so tired.  When I spend time with YD I need to be constantly ‘On’ and I started dreading spending time and feeling even more tired.  I love YD and don’t want to feel that spending time with her is such a chore.  Last weekend having had a week off after exams I spent the day with her , having fish and chips at a regional park and going for a walk around the park and sitting on the beach after.  Here are some of the views on our perimeter walk around the park.  they were taken with the camera on my phone so aren’t great quality

view from the clifftop walk

YD on one of the flatter parts of the bush walk

view when sitting on the beach afterwards

It was a lovely day and I want more of those,  where it’s a joy rather than a chore.

Dropping back to part-time study for the next two years has been a hard decision for me to make but ultimately everyone, family, friends, hospital and university think it is a lot healthier for me in the long run and the best decision I could make for myself at the moment

Disconnection

I realised today it was three weeks since my last blog post and I have to admit some of that was deliberate.  I had an absolutely mad week the first week of November with all four of my university papers scheduling their exams for that week.  I definitely had very little time for blogging that week. 

The following week I made a deliberate decision to not be online as much as usual (no blogging, no tweeting and very little facebook)- I just felt I needed some “me” time – I read several light chick-lit books, I got my hair cut and recoloured.  Most of my grey hairs seem to be at the front so when I look in the mirror all I see is grey and at 47 (nearly 48 ) I’m so not ready to look that old.  I even treated myself to a facial .  There was a few other things -such as oncology assessment and herceptin –  I had to fit in that week but by and large it was a “me” week and I really appreciated how much I needed it.

This week I have been more active and on track and due partly to another major disconnection that has happened in our family’s life.  MD and SB , after 6 years together, decided to break up the last week of October.  He has just been deployed on a 6 month peacekeeping mission this week (Pacific, thank goodness, not Middle East) The breakup has been reasonably amicable and I am very proud of both of them for handling it as well as they did.  SB even came to see us last Sunday when he was up saying farewell to his family before he left which I think shows a great deal of mutual respect between he and us.  I won’t tell anymore of their story as it is not my story to tell. 

The only trouble with not blogging for a few weeks is that you end up with lots of things to tell so I am breaking it down to more manageable slices  this will be one of my “D” series of blogs over the next couple of days – ‘Decisions’ and ‘Destinations’ to follow as time allows

The rest of October

This is more of a journal entry of the things I did in October.  A month ago I wrote that I felt like I was juggling a lot of balls in the air and that feeling hasn’t changed.  I managed to get all my assignments done although I don’t feel I did them well and the first mark from them that I got back yesterday (a B-) shows that I have been not quite on top of my game.  However I said at the beginning of the year my goal was to just pass the papers this year even if I only got a ‘C’ so I am not going to beat myself up about it.

The lethargy I have been feeling since the middle of September is still there and I am struggling with study for my exams next week.  I also have an echocardiogram for my heart function next week, and I can’t help wondering whether the lethargy is related to that.

I managed to both do my assignments and take part in the Breast Cancer Action Month activities that I wanted to.  I surprised myself by managing the 5km Dove Pink Star Walk around the domain quite well and even managing to walk the couple of kilometres back to the car afterwards.

Dove Pink Star Walk

I helped with the WIMA Ride, selling raffle tickets and other behind the scenes organisation on the day

Over 500 bikes with pink ribbons at the start of the WIMA ride

 

And MD and Halo (her dog) helped me with a 3-4 hr shift with the Pink Ribbon Street Appeal

Even the dog wore pink for the Pink Ribbon appeal

Oh well I had better get back to study LOL

Juggling

I feel I’m juggling several balls in the air at the moment – I want to be involved with Pink Ribbon Breast Cancer  awareness in October but I also have several assignments due at the beginning of October too.  What to do? … what to do?

Unfortunately they all occur in the first half of the month too.  On the 2nd we have the Dove Pink Starwalk which also coincides with YDs ball night so have to juggle helping with preparations for that – she is adament she wants to get her nails done at a proper nail salon so I am taking her to that in the morning and then her house staff will finish getting her ready and take her to the ball.  We sorted out what dress she was going to wear yesterday – I managed to talk her out of a 80’s bridesmaids dress that one of the staff had given her as a hand-me-down from one of the other housemates – not really appropriate for a 21 year old in 2010. 

I have assignments due 6th (2000 word essay + interview transcription on Professional Communication Skills) and 8th (1000  in tongan about customs) then MD is up for the weekend 6th -10th (as its the closest to her birthday and SB will be away training).  She and I will take part volunteering in the Pink Ribbon appeal day on the 8th.  We also have to fit in a birthday lunch or dinner with the family while she is up.  I also want to volunteer for the WIMA ride on the morning of Sunday 10th.  On the 15th I have a 20 page assignment due for my ‘Treaty of Waitangi’ paper.  My plan is to really put my nose down , bum up and try to get as much done as possible before the 2nd (a week away) as I possibly can so that I can acheive both objectives. 

Then there is appointments with my breast surgeon on the 5th and my second Sweet Louise meeting (12th).  The first one went well with most people making me feel welcome –  but then I had to spoil it by having a dizzy spell in the middle of it – I joked that it was just to make sure they wouldn’t forget me as one of the newbies.  Ever since that last dizzy spell (17th) I have had an overwhelming feeling of lethargy which I am only just getting on top of now hence the rush now to get my assignments done.

I plan to do the same as last October and wear Breast Cancer survivor t-shirts every day to remind people that behind all the hype around Pink Ribbon there are individual lives forever changed by this life-threatening illness and I hope to spread the word about IBC (inflammatory breast cancer) – thats its not all about lumps while I’m doing it.

You probably wont see another post on here for the next couple of weeks

Head Games

Subtitled: S.A.D., L.A.C.A.D., Life and laughter.  I am a definite believer and think I’m a sufferer of S.A.D. (Seasonal Affective Disorder) I’ve had a very bad case of the winter ‘Blahs’.  The weather is starting to improve now with a few more sunny days so I’m hoping that my mood will lift along with the weather.  I also hope to stop the cravings for starchy carbohydrates and sugar.

Coupled with this I have also been dealing with L.A.C.A.D. (Life after cancer affective disorder) a self made up term for the phychological minefield you are left to navigate after dealing with cancer.  In my first post about our cat Gemma’s near-death experience I mentioned my own hip and head pain.  I was awaiting a CT scan on my hip to rule out bone metastases.  And I also mentioned a headache that I had that I was reluctant to tell the drs about because I knew they would do a head scan as well.  After having two dizzy spells on the train (while sitting down) and having continued pressure to the left of the back of my skull I reluctantly told them at my last herceptin appointment (19th August). After talking to the nurse and them talking to the Drs – I got told to report to ‘Acute Oncology’  – those of you that have read my blog from the beginning will know that I have had several visit to ‘acute oncology’ most of them ending up with me being admitted to hospital.  Thankfully this was not one of these times –  after testing my reflexes and getting me to do some finger tracking and balance tests – I got told that I could go home but they were definitely going to book me in for a head scan. 

 I have just had my CT scan for my hip yesterday and an MRI on my head today.  I get the results at my next oncology assessment next Tuesday 7th September.  Here’s hoping for the all clear. 

This is where the L.A.C.A.D comes in – having pain and lack of sleep because of pain gives you a lot of time to dwell on the ‘what ifs’ and also as I mentioned in my Post-Gertrude paranoia post it is hard to let go of your worries when your oncologist are more paranoid than you are.  I know they have to check every unexplained pain but I hate …Hate …HATE living my life with the possibility of Gertrude coming back hanging over me.  I have found it really hard to concentrate on my uni studies outside of actual lecture times and have neglected my study at home.  Its hard to motivate yourself to read dry academic wordy articles when you are tired and headachy.   I did manage to write a 1000 word essay in Tongan for an assignment due last week though.

And then of course two weeks ago I tripped and sprained my left wrist  so more pain ensues.  This when I had been proactive and convinced my Uni friends we should walk round the block on Wednesdays between lectures to get some exercise  – wouldn’t you know it?

I am on Uni semester break now and I am still trying to get the motivation to start studying I have decided I would give myself until tomorrow to rest and then get into it.  Tomorrow we are meeting at uni in  a group to work on taping ourselves  – for individual assignments and I am hoping once that is done I will feel more like concentrating at the job at hand.  I have one essay assignment due on the 13th of September and then two bigger report type assignments due at the beginning of October (- while that seems to be a fair amount of time away I know I cant afford to not get started on them during this semester break.)

Life hasn’t been all doom and gloom for the last month though.  OH and I have made the effort to go out more regularly.  We had always thought when YD left home that we would go out more but with treatment for Gertrude often intruding we haven’t made use of weekends etc for having ‘datenights’.  We found (thanks to OD and her R) that a restaurant in our town which is under new management now serves food of fine dining standard with a wine list to match.  If you are wanting a nice night out I can definitely recommend Element Restaurant and I also found a new favourite wine  there.  Last week I felt even more spoilt as I had three nights out – two dinners (both OH work related) one here and the other here and a trip to the movies to see ‘Inception’.

I’m trying to not feel guilty for not seeing YD some weekends,  After my primary role being her mother/caregiver for 18 years I am still not used to putting myself first.

I also have been finding joy in things along the way – a niece’s engagement, SB’s achievements, to name a couple of things that have made me happy in the last month.  One of the contrary things about this last month is at the same time I have been feeling down a lot I have also laughed a lot.  I have had two Uni friends on completely seperate occasions say they can find me by my laugh (across the cafe or in a classroom down a hall)  that’s not saying that I have a loud or a weird laugh, which I was a bit selfconscious of when they told me, but that they can recognise it.  I talked to OH about it and we came to the conclusion I laugh more and and less selfconsciously than I used to.  I guess I find more joy and laughter in the ordinary things of life than I used to and that I laugh possibly more freely than someone who hasnt had the same life-altering experience.

Oh well – roll on next Tuesday where hopefully I will get the results of all these scans – although if they are negative for metastases I may still need to see other doctors about the headaches and hipaches. I will keep you posted.

Even when I don’t write a post for a while you can keep an eye on the twitter feed at the top of the page for things that happen in between posts

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 !!