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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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    No Princess Alone button

Merry Christmas

Merry Christmas Everyone!!

our Christmas tree

We had a smaller immediate family Christmas Day yesterday with OH, myself OD, MD, YD, OD’s R, MD’s boyfriend A, and our ‘French daughter’ (our AFS exchange student from 2006 ) C.  So our smaller family Christmas was bigger than it usually is. 🙂 This included bacon sandwiches for breakfast and  a more formal sitdown dinner in the early afternoon.

We have an extended family get together this afternoon/ evening with Sis M and her family, R’s family, and Niece S’s in laws as well.  This is more informal, with everyone bringing some Christmas dinner leftovers and is a very relaxed time.

I could have dwelt on the fact that this year I am metastatic and we dont know how many more Christmases I have got but  C and another exchange student N both arrived on the 20th of December.  (N is staying with her host family but visiting us often – just the same as it was when she was here in 2006.) N dropped in to see us last evening as well to exchange presents.

With C and N arriving so close to Christmas – C is staying with us until the end of July 2012 – It has added a new dimension to our Christmas preparation and celebration and has been exciting for us all.  I have chosen to concentrate on these and the other more positive aspects of Christmas instead of feeling down at all.

YD is home for a few days over Christmas as well so we are fairly busy.

Although it is not necessarily good for my health, I did not have my chemo that was due on Thursday because my neutrophil and white blood cell count was too low.  But the upside of that was that I have not had to deal with the side effects – nausea and suchlike – for the Christmas period.  So it is quite a positive thing in my book

I hope everyone else has had a good Christmas too

Several mini-posts

I have quite a bit to tell you but none of the following topics warrant a long enough blog post to themselves so I will break it up under headings

‘Chemo chauffeurs’

With my chemo being weekly and if the Adriamycin works I will be on it till April so if any of my more local friends want to book a Thursday to keep me company at Auckland Hospital  – its only a very quick chemo takes about an hour or so and the appointments mean I’m at the hospital about 11, 11.30 – 1ish – let me know so I can add you to the roster of chemo chauffeurs.  We are all good until mid January at the moment, MD, OD, OH and JMJ have all had turns, and the girls and OH can take me if no other volunteers but just thought I would put it out there to see if anyone else wanted to volunteer. Ring or text me if you are interested.

Guess my Neutrophils

As the Adriamycin is another chemo like Taxotere and Vinorelbine that can affect my immune system I have to keep an eye on my neutrophil (new white blood cells) count.  Above 2 is normal (around 4 is usual) and if it drops below 1 I can’t have chemo.  With the past experience I have had I am getting pretty good at gauging what level I’m at but I realised just how good yesterday.  Since I’ve started Adriamycin my blood counts on a Wednesday before next chemo on Thursday have been 4.5 after the first chemo and 1.7 after the 2nd.  When talking to RI (Cancer Society Liaison Nurse) when she rang to check on me on Wednesday afternoon I said that I felt they were possibly a fraction lower than the week before from the way I was feeling and that I thought they would be about 1.5  – Official result yesterday: 1.49 – how good am I at gauging it???!!!

Other Chemo side-effects

As the toxicity builds the nausea and other side effects are becoming a little harder to ignore  – We are experimenting this cycle with adding another med to the mix and seeing how it goes. I have to take steroids the day of chemo and the 2 days following to counteract allergic reaction and they do tend to help with the other side effects.  I actually feel more fatigue, nausea etc Sunday Monday.  Afternoon naps have become my friends.  I am still doing my Cancer Wellfit gym program and I know that is helping keep my fitness levels up and helping me cope.

Hair today, gone tomorrow

I bit the bullet and got my hair shaved at my hairdressers on Tuesday, it is just starting to thin in patches and should be all gone by Christmas.  This time is way less traumatic than losing my long curly hair I had all my adult life was the first time, and I actually went by myself to the hairdressers on Tuesday.  As I was saying to A, the hairdresser, part of that was purely psychological.  I am in control of so little at the moment as far as ‘Gertrude’ and her spawn in my liver go, that this was one thing I could control and could decide when to shave my hair and go and have it done  by myself.  It was very empowering in a way.

the shaved heair look - its all the fashion 🙂

apolgies for the typo in  the pic caption it won’t let me edit it and change at the moment

one of my favourite hats 🙂

Goodbye Judy

Yesterday I learnt that my fellow IBC ‘sister’ Judy had died. I shed some tears for her because even though we had never met we had shared our stories and lives with each other through our blogs then twitter and facebook. It happended very fast after she found out she had more progression in her liver tumours a few short weeks ago.   She wrote her story at ‘Just enjoy him’.  I have other IBC sisters also going through very rough times at the moment, Susan (@whymommy at ‘Toddler Planet’) and one of my New Zealand IBC ‘sister’ K in Christchurch (who by a stange twist of fate has my niece as her nurse who pops in to see her at home) .  I also know other women with BC who are facing bigger hurdles than I am, Ann (http://www.butdoctorihatepink.com/) and Natalie ( http://www.helpnat.com/).

Judy and Susan and Natalie all have younger children and that breaks my heart a little for them and their children.  One thing I am grateful for is that I got to see my children grow to adulthood – I may not live long enough to meet all the grandchildren but I know that I have done my best to leave my girls well prepared to bring up their own children, and I am content with that.  Even YD is in a place and stage that I feel ok about it.

Reading about these women and/or having them in my life puts my own position in perspective and makes me more determined to make the most of every moment I have left.  When talking to LW last night I actually invited her to my 50th birthday party – still over a year away – late December 2012, and I am setting goals like that and ODs wedding June 2012 as  dates to still be around for.  Any of you that can make it  are invited to my 50th.

I will miss Judy who was the same age as me – she had a wicked sense of humour which shone through on her blog and facebook, and my thoughts at this time are with her family  – RIP Judy

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

Other peoples words

I read two different blogs this week that dealt with the feelings of cancer patients – one was a poem about what its like at diagnosis

This is an excerpt from Slouchy’s poem which you can find here on her blog Slouching past 40

“On x-ray
The shadow is
Unexpected —
Starker by far
Than shadows
Should be, and
Then, there,
The fear is sown,
As insidious
As the cluster
Of confused cells
That inspired it.”

Please go to her post to see the rest of it – its beautiful

The other blog I read was by someone in remission – in the States they call it NED and she was writing about how “NED’ lives with them and impacts on their lives.  You can find Clerygirl’s post  here at Mothers with Cancer

 Both of these pieces are great ways of showing both the good and the bad, the highs and the lows of being a cancer patient. 

I found out today that an aquaintence – another women with a special needs child – has been diagnosed with metastases to her bones only a few short months after original diagnosis of breast cancer and it made me reflect on these two bits of writing . 

I hope to be living with NED shortly but with the news about A today I am torn between feeling grateful and relieved mine was only a regional recurrence and the fact that my concerns about further recurrences are justifiable and real.

As I said to a mutual friend quite frankly “CANCER SUCKS @#$&%$!#$!

Not too bad so far

I am feeling quite good at the moment – I haven’t had too many side effects from the chemo as yet and the queasiness only lasted through Friday.  I didn’t feel very hungry until yesterday (Monday) but did feel quite good otherwise.  I am hoping that this pattern will repeat itself for the following cycles – I am also wondering how much of the queasiness was caused by the loading dose of herceptin.  I am very interested to see what this weeks dose of vinorelbine on its own dose to me. 

I had a quiet Friday and Saturday but Sunday saw me decorating the tree with YDs help and then helping her with wrapping her Christmas presents and organising cards for all her house mates and classmates.  This is getting an easier job as she is getting much better at staying on task and she also could tell me all the names of her classmates and how to spell them when we were making the list of all the cards  she had to write. 

Monday I had an counselling session at the Cancer Society and I did some shopping at Newmarket and at Sylvia Park on the way home  – I took the train up as it is so much more relaxing than driving and cost less money as well. 

Most of the week is fairly booked up with things so I probably wont do another blog til Friday at the earliest.  Today I have a waxing appointment and I am also going to pick up the ham for Christmas dinner. 

Tomorrow I have to put my car in to the panel beaters to get a scratch on its front bumper fixed – someone backed into me in the carpark at a shopping centre  the day I met up with L (IBC “sister”) for  a chat.  They were good about leaving a note on my windscreen about it.  This works in well with me tomorrow because I then have my blood tests (pre-chemo for Thursday) then hop on the train to go up for my bone scan .  I have to be up at Auckland Hospital  at midday for them to do an injection of radio active contrast and then I have to wait around til 3 for the actual scan so I will probably take a book and go and sit in the Domain or something if it is fine. Because my nausea post CT scan, OH is picking me up after the scan.  

On Thursday OD has the day off her Christmas holiday job so is taking me through for my chemo.  Once I know how I am handling things and how long the weekly chemo is likely to go on for I might ask for volunteers to pick me up from chemo each Thursday to take a bit of the strain off  OH. he is off for the two following chemo dates (Christmas Eve and New Years Eve)

missed appointment?

I have just had the wierdest phone message. I got a call to say I had missed an apppointment with my medical oncologist (the one that told me I had a recurrence that sent me to the radiation oncologist, and that I was being referred back to from radiation oncologist) I rung them back and said I would have defintitely been there if I had known but I had had no notification of it – no letter, no phonecall/message, nothing. They said “oh it’s just a review as your under treatment”. I said “no it’s being referred back to him as I can’t have radiation”. “Oh” they said “we will get your appointment rescheduled as soon as possible- we just have to tell the schedulers” – so hopefully I will hear within the next day or two when my new appointment is and it will hopefully be within the next week.  I just wish I had known that I had the appointment today – I haven’t been sleeping well , I get more anxious when I dont know the plan.  Once I have the plan I can handle anything they chuck at me.

In the Pink – Part V – grabbing the moment

This will be my last “in the pink” post as I’m going AWOL for the rest of Breast Cancer awareness month

They had mucked up getting my referral letter from medical oncology to radiation oncology so I haven’t got my initial consult with the Radiation Oncologist until the 6th of November.  As we have this 2 week gap OH and I decided this would be the best time to do the roadtrip to take the carload of MD’s stuff down to her in Christchurch.  For those non-NZrs that read this-  this is a two-day trip down including taking a car ferry from the bottom of the North Island to the top of the South Island and lots of driving.  We are going down in two days, staying for 6 days, and back in 3 days so will be back the 3rd of November (3 days before my rad onc. appointment) .  As we have no idea what treatment plan they are going to prescribe for me, it could be anything from 2 weeks to 5 weeks radiation therapy and  by the time I’ve had the treatment and recovered, there possibly wouldn’t have been time to do the trip between now and Christmas.

I am taking my breast cancer t-shirts and there is a pink ribbon flying from the car aerial so I’m still doing my bit for awareness.  If there is anything happening in Christchurch while I’m there that is a pink ribbon thing I will try to take part.

It feels very weird going on a trip like this at such short notice.  Until YD left home we never had the opportunity to pack up and go at short notice but with OD at home to look after the cats and rabbit we could actually just decide to go.  I’ve been amazed that my 1st choice of accommodation at all the locations we wish to stay haven’t had a problem fitting us in so the last-minute planning has actually gone a lot smoother than I thought it would.  YD was a little surprised to hear we were going on such short notice and that she wouldnt see mum for a couple of weeks but she has got quite a few activities coming up that will keep her busy til we come back.

I remain in a very positive frame of mind although telling people I need more treatment has been hard – most of them are quite shocked and find it hard to hide their dismay when I tell them .  But as I tell them it is nothing too serious it is still contained within my chest area and hasn’t spread anywhere else so that is good news as far as I’m concerned.

When I get back I am also going to press forward with applying for the university social work degree.  I am hopeful that this little flare up will have been successfully treated by the time Uni starts next year and that I can get right into  study.

I have helped create a Facebook group of facebookers that belong to my IBC mailing list and it has been wonderful  seeing their faces and as most of them have added me as a Facebook friend it has been great sharing a little more of their lives with them and them seeing a little more of mine.  We are so much more than we write to the mailing list.

I will catch you all up on my adventures when I get back

In the Pink – part IV – pink wings, purple hair!!

No my hair isnt really purple – it just has some dark purple streaks mixed in with dark brown/dark auburn base colour it actually looks pretty cool I think. 

top view of my new hair colour

top view of my new hair colour

 I decided to go a bit silly with my hair colour as a way of cheering myself up in light of needing more radiation.

I feel so much more like the 46 year old I am. The gray streak at the front of my hair just made me feel old every time I looked in the mirror.

On the whole I am feeling really good apart from soreness and I am definitely in a better headspace now I know what we are dealing with.  I was stressing and worrying about whether I was stressing and worrying about nothing.

Waiting for appointments is driving me a little nuts.  I can’t really make any plans until I have my initial radiation oncology appointment (where we discuss treatment details) and I havent heard from the hospital when that is yet.

the guys tshirts for the walk

the guys tshirts for the walk

To keep myself busy I have been unleashing my creative side creating wings and t-shirts for the Dove Pink Star Walk that was on last night.  I really enjoyed doing it and I think I will try to do more creative stuff in the coming months when you are concentrating on creating something you can forget everything else that is going on.

the wings

the wings

There was about 4000 people taking part in the walk last night and as OD said it was neat to be in amongst that many people who were all there for the same thing. The “Get Out Gertrude” team consisted of myself, OH, OD, OD’s R, SisM, SisMOH, and niece S – we are going to make a tradition of it – more members for the G.O.G team are welcome for next years event.

Dove Pink Star Walk - fundraising for NZ Breast Cancer Foundation

Dove Pink Star Walk - fundraising for NZ Breast Cancer Foundation

In the pink – part IIIa

Forgot to write the other thing that kept me busy was MD coming up to visit for her birthday and to pick up her new puppy that my sister had bred. 

When we got the news last Tuesday both MD and us were grateful she had already made plans to come up because it was easier  for us to process the news all together.  Halo (the puppy) kept us busy for the day she was at our place, 

halo the hunter

halo the hunter

YD came home for Sunday and Monday to spend time with MD and Halo and that gave us the time to tell her the news as well.  YD was not happy at the news but only because we told her that me having more treatment might effect how often I see her.  We told her it was a very small amount of cancer that had come back and that it just needed a little zap of radiation to fix it.

In the pink – part III – Busy

I have thrown myself into breast cancer awareness month and I am glad I have this to keep me busy while waiting for appointments etc I did the Pink Ribbon Day street appeal at Drury on Friday and helped out at the WIMA ride on Sunday – hundreds of bikes with Pink ribbons drove through Central Auckland. I helped out at the beginning and the end but next year they have said I can go pillion -passenger on one of the bikes for the actual ride itself. I’m quite looking forward to that.

Pink Ribbon Day

Pink Ribbon Day

hundreds of bikes lined up for the WIMA ride

hundreds of bikes lined up for the WIMA ride

 

my pink ribbon hat with WIMA badge

my pink ribbon hat with WIMA badge

WIMA stands for Women’s International Motorcycling Association but a lot of men took part as well

Last night I went to the local breast cancer support meeting – it was a fun night with a guest showing us how to make homemade Christmas cards with stamps and ribbons.

This afternoon I am getting my hair dyed as I’ve got sick of the grey streak thats stares back at me when I look in the mirror – while not quite going pink for this month my colour choice is a bit out there – I  won’t tell you what it is until I see how it turns out – as I’ve been saying to people with going back into treatment Its time to get my battle colours on LOL

We are doing the Pink Dove Star Walk on Saturday night – hopefully the weathers good.  I’m designing wings for the girls and t-shirts for the guys on “Get Out Gertrude”  team – there are 7 of us

I’ll let every one know when I know about treatment etc – hopefully that won’t take too long

Part IV coming shortly ….

In the Pink – Part II (boohoo)

 “boo hoo or rather Bugger!!!” was my reaction to the news I got at the oncologists yesterday.  Forgive for not updating blog til now  but had a lot of things to do and also wanted to get my head on a bit straighter before writing this post.

As you have been aware if you have been reading this blog I have been having a few niggles – one of which was creating swelling and tenderness in the area circled in the following picture.  Unfortunately the CT scan showed I have an enlarged node (internal mammary lymph node under my rib cage)  This node was not enlarged in the CT scan done at my primary diagnosis August 2008. 

area circled is the area I have swelling and tenderness

area circled is the area I have swelling and tenderness

I saw Dr H yesterday (my head oncologist – sometimes I see his underlings)  and unfortunately just by his physical exam of me coupled with the CT findings he is pretty sure it is cancerous and he is referring me to the radiation oncologists for more radiation to that particular spot.  This spot was not targetted in previous radiation as it had not been shown to be affected at that time. 

I asked him if there was any chance that it was something else and he said no.  And as I have said to people – he has “been there seen that” so I trust his judgement.  He wouldn’t have been so adamant if there was a possibility of it being anything else.  And he also said if I was going to have problems this is one of the first places he would expect to see something.

The good news is that it hasn’t spread anywhere else and while I  am not ecstatically happy about this recurrence it is manageable and treatable.

my "diagnosed with recurrence" bead

my "diagnosed with recurrence" bead

I had bought myself a bead for my “cancer beads” bracelet which I was intending to put on yesterday as a ” getting through the first recurrence scare” bead but now it is a ” getting diagnosed with recurrance” bead and I will not be adding my NED anniversary bead in April but adding at least another “radiation” bead and then hopefully “acheiving NED again” bead.

 To some people this may sound silly but it is these little rituals that have helped me to get through this psychologically.

In other news I am definitely helping out on Friday with the local Pink Ribbon street appeal and at the motorcycle fundraising ride in Auckland on Sunday

MD is flying up for her birthday this weekend as SB is away on exercises and now with this news I am really glad she had already made those plans.  We haven’t told YD as yet but will probably tell her this weekend.

In the Pink – Part I

October is Breast Cancer Awareness month and I am doing my bit.  Because of the recurrence scare I had  and planning for YD and my trip to Christchurch I didn’t really think too much about  doing anything but the last week or so I have really been trying to figure out how best to use my time and energy to do my bit.

I went to counselling at the Cancer Society today and the counsellor is really pleased with the headspace I am now in.  One of things we discussed was because I am who I am (with my background in special needs awareness and advocacy) I feel the need to be actively involved in the same sort of thing for Breast Cancer awarenesss especially around IBC or breast changes that dont involve a lump.  I had thought on my way up to see her of popping in to the NZ Breast Cancer Foundation and she thought that was a really good idea to see if there was any other activities that I could be involved in.  I hope to be involved in the Pink Ribbon Day on Friday in someway,  but there are also other events that I am taking part in this month.  I may volunteer as a marshall for the WIMA Pink Ribbon Motorcycle Charity Ride
Auckland Branch – 11 October 2009,  I am doing the Dove Pink Star Walk  at the Auckland Domain on the 17th  and taking part in a bid to create the worlds longest conga line on the 31st at Sylvia Park.

I spoke to the events volunteer co-ordinator today at the Breast Cancer Foundation but we also talked about my willingness to get up and tell people my story and she introduced me to the communications director. I mentioned my breast cancer story for the NZ Womans Weekly and the communications director said “You’re ‘Get Out Gertrude’ aren’t you?” and I said “Yes , indeed I am” LOL – the NZBCF was one of the sponsors of the story competition I won.

The other thing I’ve decided to do is buy some tshirts from the warehouse – They in conjunction with NZBCF are selling fundraising t-shirts and most have the pink ribbon imagery on them. $5 goes to the NZBCF. Make sure you pick up yours!!

 I have decided to wear one every day when I go out of the house. So thought I better have more than the t-shirt that I am wearing in my blog header.  I wore that one today and lots of people loved it – although some people were not sure what to make of it.

the three t-shirts I picked up today from the Warehouse

the three t-shirts I picked up today from the Warehouse

 I have also ordered anothert-shirt from gotcancer.org and more pink ribbon merchandise from “the breast cancer site” which sells all sorts of pink ribbon merchandise fundraising for breast cancer support and research.

So even if I am not doing anything that is actively promoting breast cancer awareness people will still be being made aware by my tshirt or bag etc

I have my follow up with the oncologists tomorrow and I am assuming that as it has been 3 weeks since my scan they would have got in touch with me to come in sooner if anything had shown up.  I am assuming that no news is good news on that front.

I will report the outcome of my oncology visit etc in “In the Pink – part II”

Bubblegum, Blindness and Busy

my two new sets of glasses

my two new sets of glasses

BUBBLEGUM!

 

One of my new mantras I say to myself when I am worried is “It’s just bubblegum”

Weird but it’s based on a story by one of the IBC survivors on the support mailing list I belong to.  As most of you know I had my CT scan yesterday and although the drs are pretty sure I’ve got nothing to worry about , it doesn’t stop a case of the “what ifs” setting in.  Then I remind myself of the story that DJ told to the group about thinking every little thing was metastasis. 

Shortly after her initial treatment she got a severe pain behind and below her right ear. They did MRIs to rule out recurrence and as she was at the oncologist discussing the results – that was nothing showing on the MRI – the oncologist noticed she was chewing gum and suggested she didnt chew it until they had sorted out what was causing the pain. Lo and behold the pain went away and it was concluded that it was her chewing very vigorously on her gum that had caused stress in her jaw and the muscles working it.  She often refers to it when she is helping those of us that are just out of treatment when we re not sure what niggles to worry about.

So folks I hope that no news is good news as far as my CT scan is concerned and that on my followup oncology appointment on 6th October that they will be able to say that my niggles are just scar tissue or lymphodemas related issues (my version of bubblegum)

BLINDNESS

As I have written before, before chemo I didn’t need glasses but shortly after starting chemo I found I needed glasses for reading.  I found out later from my oncologist this is because the steroid we take to counteract having allergic reactions to the toxins in Taxotere can harden the corneas.  I went to an optometrist and they said they would not test me until I got the go-ahead from the oncologist. The oncologist advised to wait at least 6 months from the end of the taxotere treatment and said to wait until I had finished the herceptin too.

So I went 2 weeks ago and got my eyes tested, and boy I was blinder than I thought!  He tested my distance vision as well and found that I have a slight decrease in distance vision.  I also have astigmatism, light sensitivity and bad short range eyesight.  I have had to wear sunglasses all the time in sunny weather so the light sensitivity was something i had already self-diagnosed. 

With all these issues I ended up spending more on glasses than I intended but did get the two for one deal at Specsavers.  my glasses are both progressive (see distance up the top, reading down the bottom and working on computer screens in the middle) and transitional they go dark out doors in strong light but are clear under inside lights.

I am hoping this will stop me getting so many headaches from eyestrain and because I will wear them all the time it will stop me needing to have both sunglasses and reading glasses on me at all times.

The optometrist did say given my age (46) some of the eyesight degeneration was just age-related but I believe the chemo just accelerated the process.

BUSY!!

 I worked longer shifts than I should have a week and a half ago due to our manager’s dad dying and me  covering her shifts then one of the other girls T being sick on the Saturday so I worked longer and A (another girl) taking the Friday afternoon on short notice off so on the Friday I worked all day in the shop by myself. from 8.30 in the morning to 6.30 at night and was very busy (biggest friday sales for a long time )- due to the nature of the terminals it is very repetitious movements of the right arm and although I was wearing my sleeve I ended up with lymphodema related problems and also fatigue and my shoulder muscles etc just seized up it took me several days off before things settled back down. 

It has really reinforced my decision to go to Uni next year as I cant see myself being able to work the same amount at my old job as I did before.  The manager’s back and we were discussing that we have two casual staff leaving. If I was back to normal I would have grabbed those hours to get me back to working more the hours I used to, but it’s just not possible at the moment.  However I am going to  train the replacement that she is advertising for at  the moment, because that means the trainee does all the actual work and I just need to sit or stand there and tell them what to do. I will continue being their casual fill in person as needed once this new person is trained.

I am off to visit MD in Christchurch for the next week. Taking YD for her first trip on a plane so that is exciting for her.  Will post another blog post on return