No Rads !!!

I am pissed off to say the least.  After waiting all this time for a radiation oncology appointment, I finally went yesterday only to be told that because of the position of the node they can’t do radiation to it. Although the node itself is just adjacent to the radiation field from last time the angle they would have to target it from crosses skin and bone that already has had its lifetime dose of radiation and if they radiate more it is too high a risk of killing off my skin and bone in that area leaving me with tissue that will necrotise and ulcerate.  Ahh no thanks. 

OH has redrawn the diagram that they drew to explain it to us this diagram shows things as if looking up from my stomach

OH's reproduction of sketch they did to explain why no more radiation

I had psyched myself up for radiation and promptly burst into tears when they told me they couldn’t do it.  They are referring me back to Dr H as chemo is my only other option. So I now have to wait to get that appointment. 

What chemo they will put me on – I don’t know

how long for – I don’t know

whether I’ll lose my hair again – I don’t know.

how they are going to administer it when I have only one good arm for IV’s etc - I don’t know

To say this is frustrating is an understatement but as I was saying to OH if it is a choice between chemo and letting the cancer spread by leaving the node alone then I’ll take the chemo thanks.  I would have much preferred the radiation but that isn’t an option! 

Now its again living in limbo until I get the next appointment with Dr H. and he tells me what my options are for chemo. 

I am still going ahead with applying to University - I am hopeful what ever treatment I need will be finished by the start of the University year in March next year.  I’ll apply as a fulltime student but if I have to do a reduced papers workload so be it.  I am not going to sit on my backside doing nothing.  I am working a couple of shifts at my old work this week helping them out so at least I will be keeping myself occupied until I know more of what is going on.

Roadtrip!!

Well – I’m back home again after thoroughly enjoying myself on the roadtrip that OH and I took to take the remainder of MD’s stuff to her.  I think it was just what I needed to take my mind off going back into treatment.  There were lots of times in the past week I was having so much fun I could forget all about it. 

heading down the Marleborough Sounds

OH has never been more south than the middle of the North Island so it was great to show him some of the places that I had visited as a child.  Even though we left on a long holiday weekend OH found the driving relaxing as once we got south of Cambridge, there wasn’t much traffic compared to Auckland. 

travelling down the coast of the South Island towards Kaikoura and Christchurch

 I had problems with my truncal lymphodema, spending a day driving in a car will do that to you and got a bit of pain from my affected nodes but other than that and a persistent headcold I was in good spirits for most of the trip.  We drove to Wellington spent the night then drove straight to Christchurch the next day we spent a few days visiting with MD,SB, Bro and family then headed to Akaroa for a night. 

The Giants House, Akaroa

We returned to Christchurch for 3 more nights including niece B’s lovely birthday dinner and a wonderful evening spent with my old friend A and my new friend C.  I had met A through ante-natal classes 25 years ago with our first babies but when she moved to the South Island we had lost touch over the years.  I had met C on an online forum and become friends as her brother had prostate cancer at the same time I was first diagnosed with IBC.  When I found out A’s new address and talked to C – I realised they knew each other and only lived a few miles from each other.  It was wonderful being able to meet C and have dinner with her and A, and their husbands at A’s house.

We took a day longer to come home from Christchurch breaking our journey at Picton (top of the South Island) and Tokaanu (the southern end of Lake Taupo).  Some of the scenery we saw was spectcular and the photos we took don’t do it justice, both OH and I had taken our cameras and those of you that are my friends on facebook will see a good selection of them there. 

Old University of Canterbury buildings now the Arts Centre, Christchurch

Road into Hamner Springs looking back to the bridge we had just been over

Lake Rotoiti -Nelson Lakes

Hot thermal spring at Tokaanu

peacock at Wairakei Thermal Walk

I have my Radiation Oncology appointment tomorrow which I look forward to with both eagerness and trepidation.  I am eager to start treatment and get on top of Gertrude once more, but nervous as to what they are going to say regarding treatment and ability to target only unradiated areas from before.  I also hope to get  a clearer understanding of exactly what node/s are involved.  I will write a short update on that tomorrow.  YD is coming home for the weekend for Guy Fawkes fun so hopefully I will have enough time after appointment to write a quick update as well as upload my second installment of road trip photos to Facebook.

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

 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

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

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

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

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

hundreds of bikes lined up for the WIMA ride

 

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

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

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

 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”

New look blog

I decided to make my blog reflect me a little more and so changed the ‘theme’ to one where I could customise the photo at the top.  I hope no one is offended by me using my t-shirt slogan but I felt that summed up the blog more than any other picture I could have put up. 

I thoroughly enjoyed my trip to Christchurch to visit MD, also caught up with Bro and his family( in their native habitat, LOL so to speak) all of the times I have caught up with him in the last 30 years have been when he has been up here.

I felt really tired towards the end of it and on Thursday after we arrived home I just succumbed to the weariness.  I wouldn’t have done things any different – had a really busy stay down there but I had forgotten how tiring being with YD 24/7 is.  You have to be constantly “on”. 

When MD and Bro etc were busy YD and I got round the city using a metro bus card.  Good way of seeing the city and if  I fly down again I will probably keep using it and top it up rather than getting myself around by hire car.  Certainly if I am down there with YD - it would be the preferred mode of transport as it allowed me to discuss what we were seeing out the windows of the bus and help her discover Christchurch rather than me getting frazzled by trying to drive myself around unfamiliar streets and talk to her at the same time. 

Armed with a Christchurch street map book and bus time tables we got everywhere we wanted to go.

punting on the Avon

We did all the touristy things – punting on the Avon, riding the tram, going up the Port Hills in the Gondola.  MD also shared her favourite beaches and the weather was really lovely while we were down there.

Taylors Mistake beach

Lyttleton harbor from the top of the Gondola

Southern Alps out the back of Burnham

I found the mountains (Southern Alps) an awesome sight to behold and it reinforced for me how much I love Nature’s beauty (mountains, water, or native bush).  I intend to spend more time out and about enjoying it. 

There is just something about being by the sea or gazing at a mountain that centres me

Bubblegum, Blindness and Busy

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