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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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Rollercoaster

This past week or so  has been like a rollercoaster ride with no brakes and one of the worst aspects of it is that  I  struggled to be able to articulate what  was going on and my emotions were so jumbled I struggled to not have an anxiety attack.  It’s has taken until now to be able to get my head together enough to write a coherent blog.  – but I warn you now this is going to be long and convoluted.

Rollercoaster down

Fairly gentle slope but downwards all the same – It all started with my medical oncology appointment last week some of which I reported on in my last blog post.  One thing I didn’t report on is that in our discussions  I had mentioned that I wasn’t working next year but intending to go back to University – Dr RB was concerned about the workload this would put on me and even when I said I would look at starting out gradually (part-time doing a couple of papers) he was still very much ” be careful that you dont commit yourself to too much”.  This upset me as I felt he expected me to just be “a cancer patient” but if treatment is going to be ongoing I can’t sit at home not getting on with my life.  Especially if the preventative medication works I am looking at maybe another 20-30 years of life and I have got to do something with them.  This emotional downward slope was accompanied by extreme nausea and dizziness after my CT scan on the Thursday so that  didn’t help matters.

Rollercoaster up

gentle slope up again – By Friday night I was well enough to go out with OH to a champagne wine tasting.  It is something we used to do before ‘Gertrude’ and had hoped to get into again but with the research I have done on my own about the new drugs they are looking at putting me on, Xeloda in particular, can have a bad affect on the liver and kidneys so if I am on that I may have to forgo the alcohol. That is a pity because it was one of the activities that OH and I really enjoy together – the whole wine and food tasting thing.  I feel guilty that he won’t enjoy doing these sort of things because I can’t join in with him.  It was a really good night and thoroughly enjoyable.

Two other things happened in the weekend which also helped me go up emotionally, feel less sorry for myself, although I felt emotionally down for the people involved. 

One was that a friendly acquaintance of mine lost her husband suddenly and unexpectedly and I read a blog about a woman in the US, Anissa, who had nursed her young daughter through leukemia ,   has just  suffered a major stroke and is in a coma at the age of 36.  Compared to these two situations, mine seemed trivial and I started feeling less sorry for myself.

Rollercoaster zooming up and careering wildly

For 20 minutes on Monday I didn’t have cancer

When I had my CT scan done on Thursday they had said that my results would be available to my private breast clinic (the private radiology is next door to them and they work very closely together) at my appointment on Monday.  It wasn’t. 

Because BS had no CT results to go on she was quite dismissive of my pain and tried to convince me that it was just scar tissue or other issues – that a lymph node wouldn’t be giving me the pain I was describing -even though my oncologists were all convinced otherwise. CG who is the breast physician I see there was also “lets look n the positive side until we get the CT results”  they tried to chase up the radiologist but they werent going to be in for another half hour or so.  So they asked me to sit in the waiting room for a little while until they could get hold of the radiologist.

So there I am sitting in the waiting room – mind going a million miles a minute. 

Could it be true that I haven’t had a recurrence? If it was true it meant I had a very real chance of never having a recurrence and life returning to normal compared to the “dont take on to bigger workload outside dealing with your cancer” message I had got the previous week. 

I’d feel ecstatic although a little foolish being able to tell my friends and family that the doctors had decided it wasn’t cancerous after all.

Rollercoaster zooming down

BS called me back into her consulting room.  The first thing I said to her was “I’m really confused Dr H etc have all been convinced that this node is cancerous and I’ve even asked Dr H whether it could be anything else and he has said no.  And now you are telling me that it might not be a recurrence”

BS says “Now that I’ve looked at the CT scan and talked to the radiologist I’m pretty sure that its cancerous too”

BOOM!!!

I literally felt myself come crashing down again.

She went on to say she wasn’t convinced that all my pain is from the node and the radiologist has recommended for me to have a bone scan too.  So I went from not having cancer back to having it in my node and possibly metastasised to my bones. 

She also said that surgically removing the node wasnt really an option a) because it’s a very invasive operation close to the lungs and b) unless they could be absolutely sure that was the only site of cancer and that was unlikely it could cause more problems and that chemo was the better way to go.

I left their offices in a daze – what I had expected to be a straight forward discussion on whether or not surgery was an option – had left me feeling confused and very anxious. Talking to the Cancer Society liaison nurse later on in the week she asked why I hadn’t taken someone with me – but the point was I had expected it to be straight forward and hadn’t thought I needed a support person (OH usually accompanies me to Oncologist visits etc but I like being independent sometimes) 

I felt so worked up I almost thought I was going to have an anxiety attack.

Towards the end of Monday afternoon I had a call from Dr RB – BS had got hold of him and discussed our visit and he was ringing to confirm that we were going ahead with chemo although he wanted to wait till Dr H came back at the end of the week to confer with him about  which chemo I would be going on in the interim and my eligibility for the trial.  He has also put me down to be scheduled for a bone scan as he agrees with BS that  it  should be investigated as well.  I am glad he did that because it relieved some of the anxiety/confusion I was feeling.  I felt a little more certain that we had a plan.

Rollercoaster on  the level but still zooming along with no brakes and careering round some scary corners

I was glad that I had already booked a session with the counsellor at the Cancer Society on Tuesday because I really needed it.  She was the first one to call it a rollercoaster and wasn’t at all surprised that I was feeling so stressed and was surprised it wasnt more so. That I wasn’t in her office in a bundle of tears.  It was good to just sit there and go blah blah blah and get it all out including acknowledging for the first time that I was really angry with BS for saying what she said to me initially and giving me false hope –   that it was ok for her to think it but she should never have voiced it out loud to me until she had looked at the CT scan.

Wednesday I met up with L my only  NZ ‘IBC sister’ that I know and it made me acknowledge how alone I feel with all of this.  She is wonderful and I love her for it but she is one of the few people I feel I can be truly honest with and that vaguely understand where I am coming from.  She is a 10 year survivor and I still hope to be one day too.

One of the corners I have had trouble talking to my international IBC support  network about it. The mailing list there lately has become a little over run with concerns about US healthcare reform and policy and there has been some argumentative and derogatory remarks made about other members from opposing sides of the healthcare debate. 

NZ medical care has been used by one of them as an example of “bad” socialised medicine and I felt that anything I wrote would be used to fuel that debate.  My personal view is that if you have good healthcare insurance in the States you do get better care than in NZ, but if you don’t you get worse, and it is not always by choice what health insurance you’ve got.

There has also been discussion and put down of those with negative attitudes and I have felt in such a negative attitude this week I felt that I might be attacked instead of supported.  I  felt that I was worrying only about one node when some on the list are battling a lot more than that.

another corner I had some anonymous person leave a comment on my blog that they thought my response to the “bucket list” flyer was totally overreacting.  I have to approve any comments that are left on my blog and the person had left a fake email address so I have no idea who she is or how she came to read that post.  I chose not to approve the comment.  I acknowledge that I was being very sensitive but that was the whole point to my letter/blog post that they dont know what emotional state of mind someone is going to be in when they receive such a flyer and therefore it is inappropriate.  I acknowledged to the woman who put out the flyer, when she apologised that if it had been any other day I might not have reacted as strongly. I also think that whoever left that comment, unless she is in my shoes, can’t judge me.  The person writing that comment upset me because if I can’t write my feelings on the blog then it isnt a true reflection of my journey.

and yet another corner  With my dyed hair and glasses I look pretty good and I am bumping into people who I haven’t seen since before Gertrude or what is worse bumping into people, who saw me when I was hairless and looking unhealthy during treatment last time, who are ecstatic that I am looking so well.  The former I have to tell the whole “Gertrude” saga to and the latter are actually harder as they are all like “It’s wonderful to see you looking so good – I’m so glad you’re through all the treatment now”  and I’m like “Ah …um…well….”

Some of the people I tell that “Gertrude is back” their reaction is really hard to handle – you can tell by the look on their faces that they think I am going to die.  I end up minimising both the situation and my emotions to stop them thinking the worst. 

The thing is until Monday I had a pretty good handle on my emotions but with that little glimmer of hope my emotions went up then crashing down again and I am redealing with stuff  I thought I already had a handle on.

Do I think I am going to die from Gertrude and her spawn?  The answer is that I acknowledge with this recurrence there is a higher chance of me dieing from cancer than there was before.  The results after surgery were so good there was a very good chance of me living a long ‘normal’  life but that chance has been  reduced with this recurrence.  The long-term effects of the medication I go on to treat this recurrence and hopefully prevent others will also probably shorten my life expectancy.  OH, being 8 years older than me, had always thought he would die first and is struggling to come to terms with the idea that I may die first.

So do I think I am going to die of cancer? Possibly, but I stress to people, that does not mean I am dieing of cancer now. I have a chance of it becoming a terminal illness but it is not a terminal illness at this point in time.

The cancer society counsellor thinks I have got a very healthy attitude to it.

same corner but more of a loop I decided against attending the funeral for my acquaintance’s husband and sent my condolences by sympathy card through my sister who is a closer  friend of this woman’s.  I knew I would bump into many old friends/acquaintances that may or may not have heard about “Gertrude” the first time round and I did not want to be telling them at the funeral.

Rollercoaster slowing

It has taken until now for my emotions to feel more in equilibrium, for me to lose that  tight knot of anxiety that was ever-present in my chest. I am thankful to my friends S and J who I spent time with this week – to L my IBC sister and to SisM for being a listening ear also.

Am I off the roller coaster? No but I am in a section of it where it has slowed down enough for me to look at the scenery surrounding it and not  gripping the rails hanging on for dear life screaming AAAAARRRGGGGHHH!! at the top of my lungs. 

I dont know whether I’ll reach the terminus soon and be able to get off and go enjoy some of the other rides at the park or whether there is still some twists and turns and ups and downs to come but for now I have a reprieve.

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.

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

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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. 

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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. 

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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. 

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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. 

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Old University of Canterbury buildings now the Arts Centre, Christchurch

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

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Lake Rotoiti -Nelson Lakes

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Hot thermal spring at Tokaanu

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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.