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
Posted by jaydub26 on October 22, 2009
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.
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
Posted by jaydub26 on October 17, 2009
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.
Posted by jaydub26 on October 14, 2009
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 ….
Posted by jaydub26 on October 14, 2009
“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.
Posted by jaydub26 on October 6, 2009
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”
Posted by jaydub26 on October 4, 2009