Weekly… really?

I had a really interesting appointment with the Medical Oncologist this morning. Dr H is away so I saw Dr RB again..Wow what a difference from the last time I saw him.  When I saw him back in August he had been pretty certain that I didn’t have a recurrence.  As I discussed with OH afterwards, I think it was because I had such a good response when I had my surgery nobody expected me to have a recurrence quite so soon.  It was one of the things that my radiation oncologist had said as well. 

The best chemo options for me are ones that will both shrink the cancerous node but also stop the cancer progressing elsewhere.  There is a drug called lapatinib that is  a similar drug to herceptin but in works on a wider range of things than just Her2 – at the moment it is not funded by Pharmac ( the NZ drug funding government organisation) and our health insurance will also not cover it.    There is a trial that is starting round about February which is  going through ethics committee processes at the moment that is testing the combination of Lapatanib (also known as Tykerb) plus Capecitabine (xeloda) versus a new experimental drug called neratinib.  I am possibly a very good candidate for this trial but it is not starting straight away, and ideally this is my best shot for long term control of the “spawn of Gertrude”.  Its also oral tablets so that is also great news.

I could start on Capecitabine now but then that would preclude me from the trial.  So I am going on weekly chemo of Vinorelbine (Navelbine)  /Herceptin with view of possibly going on the trial when it gets the go ahead in NZ -probably about February.  If between now and then they decide I am not suitable for the trial I will probably start having capecitabine (xeloda) anyway.  With this node developing so fast after the original treatment -and while I was still on herceptin, we may be looking at me doing some sort of maintenance drugs to stop any more progression as a long term situation.

I will get into the chemo as soon as the schedule has an opening, sometime in the next couple of weeks. It means going up to Auckland hospital once a week for approximately an hour of  IV chemo.  They couldn’t tell me for certain  when I will start but they are also sending me for another CT scan- I am going privately to get it done faster but also they want my breast surgeon – the lovely BS who works in the private sector to look at the situation and check that there is no chance of a surgical option.  She can’t access the last scan becuse it is in the public hospital digital system.  We are pretty sure surgery isn’t an option but as the med Onc said it doesnt hurt to ask the question.  Even if surgery was an option for the node, I would still need chemo as a mopping up measure.  They also want to check there has been no more progression since September – so that they know exactly what they are dealing with going into chemo.  It just shows what an aggressive bitch of a thing Inflammatory Breast Cancer is that they are checking so soon after my last one.

One bit of good news I got today is that I will possibly not lose my hair this time round.  Mind you I wont be able to colour it again so I’ll just have to go for the graying but trendy style look.

I am having my CT scan tomorrow.

On being a “cancer patient”

I am officially a cancer patient again.  I have my new appointment with my medical oncologist this coming Wednesday at 8.30am and they were at pains to tell me this would be at Auckland Hospital.  For those of you unfamiliar with Auckland regional hospitals and where I live in relation to them and how they spread the health funding dollar I will explain in more depth.  I am theoritically under the South Auckland health board’s “jurisdiction” because of where I live and things such as my heart function tests and CT scans are done through them at Middlemore as that is where the funding for me to have them is – however because of the sort of cancer I have got  I am under the teams of oncologists at Auckland Hospital which is run by a different health board. 

My oncologists see their patients at Auckland Hospital when they are in active treatment and at Greenlane Clinical Centre (the other central Auckland hospital) when they are finished and are just under “surveillance” as it were.

Until I had finished my Herceptin treatment all my check ups with the oncologists were at Auckland Hospital because I was still in “active treatment”.  At my August followup before my last herceptin when we had first discussed my”niggles” although the medical oncologist Dr RB had sent me for a CT scan he honestly thought it wouldn’t show anything and so scheduled my next follow-up to be at Greenlane. 

At my one and only visit to Greenlane I saw my head medical oncologist Dr H and was promptly told I was going back into active treatment although at the time he thought it would be radiation.  My radiation oncology appointment was at Auckland as you only see the radiation oncologists when you need active treatment.

I had just got my head around not being a cancer patient when I am one again but due to the timing I can’t decide whether it should be “I am a cancer patient again“  or “I am still a cancer patient”

It really bugs me that I am going into this Christmas season as a “cancer patient”  I had really been looking forward to being able to walk into the end of year functions with the proud title of  ”cancer survivor” and have people look at me that way.  Now the first thing that they are going to see and label me as is “cancer patient” if they know what is going on. 

It also bugs me that we can’t make any plans for Christmas until we know what my treatment plan is and YD is getting worried about me being in hospital like I was last year and all we can say to her questions is “We hope not” – We can’t make her any promises that I won’t be, because we don’t know what treatment I am getting or how it is going to affect me and we don’t want to make promises we can’t keep

I try to keep fairly positive and I got a stainless steel bracelet off “thebreastcancersite.com” that has the serenity prayer on it -”God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference” I wear it everyday and it reminds to think “it is what it is – so just deal with it”
I was writing an email to my IBC support network this morningand in it I used the sentence  This is a new area that had never showed up on previous imaging although the “spawn of Gertrude” were probably hiding out there the whole time. I rather like the term “spawn of Gertrude” so I think I will use it sometimes when I am talking about this recurrence.

I will probably write my next blog post on Wednesday after I know what the plan is

I’m impressed!

After my previous blog post which detailed the email I sent to a Real Estate agent about her use of the term ‘bucket list’ I have to report I am very impressed by her response to it.

She actually had the courage and integrity to actually front up to me in person and apologise for any offense caused by her flyer. 

She had never meant to cause any grief to anyone and had run it past some other people that are in remission from cancer etc and they had said it was ok.  But as I said to her, OH and OD it was because of the circumstance and frame of mind in which I got the flyer that it did affect me and she acknowledges that. 

We had to agree to disagree about the term “bucket list” being overly used but we ended the encounter feeling like we knew where each other were coming from a little better.

Inappropriate use of “bucket list” phrase

 

Last weekend we recieved this flyer in our letter box

the flyer

 

which lists

Overseas travel? retirement to the country or beach? ready to stop and smell the roses? downsizing(children left home)?ready for that single level home? just want to be mortgage free now?

as the things that are appropriate for a bucket list I’m not saying one of them or more aren’t for some people but when it is a marketing ploy by a real estate firm and clearly most of the things on the list have a real estate component I find it offensive.  I wrote the following letter to the real estate consultant involved

 

Dear …,

I thought long and hard before writing this email but in the end decided you needed to know that you had offended at least me with your “my bucket list” flyer drop in the …. area last weekend.

In August 2008 I was diagnosed with Stage IIIC Inflammatory Breast Cancer – Stage IIIC means it has gone to inoperable regional lymph nodes – in my case supraclavicular (above the collar bone) it is the closest you can get to having stage IV (metastatic – spread to other organs) as you can be without actually being Stage IV. 

I underwent treatment, having to have chemo and radiation before having surgery April this year and was declared in remission. 

In late July I started having more pains and in October was told there was a recurrence or progression to more inoperable regional lymph nodes, this time behind my ribcage ( internal mammary nodes) and that I would need more treatment – with this recurrence I am also told there is a very high chance of me going to Stage IV in the future.

I had an appointment with my radiation oncologist on Friday only to be told they can’t give me anymore radiation in that area and that I will have to go back into chemotherapy treatment.

This was the frame of mind with which I received your flyer.  With the threat of Stage IV metastatic cancer looming I am making a theoretical bucket list but it looks nothing like yours – for most people their house isn’t high priority on that list- but what I find truly offensive is that you used it as a marketing ploy/gimmick without any regard for the people whose letterboxes you were putting it into.

If I was offended as was my husband and daughter, imagine how it would have been for people whose partners/family members are in hospice care, or worse have just lost them to cancer, how they would feel.

Having to possibly downsize or sort out finances is all part of dealing with cancer or other terminal disease/illness but it is not appropriate for you to use it as a marketing ploy, especially in letterbox flyer format without any regard for the feelings of those receiving it.

I believe the movie “The Bucket List” although a good movie and well meaning in its intentions has given people the false impression that this phrase can be used for promotional purposes. It has become over used and open to being inappropriately used in my opinion.

All I ask of you is please think a little more before your next promotion

I am pasting a copy of this email to my blog which is about my battle with cancer and my thoughts and feelings in dealing with it.

 

Yours sincerely

…..

 I included on the bottom a link to my blog and other sites with information about IBC

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.

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.