All posts for the month March, 2011
Posted by jaydub26 on March 25, 2011
Ok, this is the post where I admit that I’m not as sane and as put together as my last post would seem to imply.
My mind jumps from being all gung-ho and ‘once more into the fray, dear friends’ to all sorts of weird thoughts.
Let me tell you of one the thought conversations I had with myself on the train this week. I was going over the phone conversation with Dr H in my head.
And I got into this wierd ‘alternative universe’ where I started to think that I might have misheard him when he called. The way he told me was ” we dont need to schedule a biopsy because its grown” The way I thought I may have misheard him was changing that last word to ‘gone’ instead of ‘grown’. See how that would change things entirely.
I then went over the rest of our conversation trying to make the ‘gone’ fit. I tried really hard because I wanted so much to believe that could have happened. I had to admit defeat and acknowledge the word had been ‘grown’ all along.
I’m struggling when I tell people, the look on their faces, when we talk about control not cure. That’s why I prefer people to read my blog than me tell the same story and answer the same questions and see the same reactions over and over again. That’s not to say I don’t want to talk about it ever but it needs to be on my terms.
OH and I have done a lot of talking, some of it pretty honest and scary, some of it a very dark black humourous take on our situation.
I am looking forward to Wednesday’s oncology assessment appointment, because then we will really know what we are up against. We will be able to make a lot more decisions then.
I have booked myself a ‘Body Shots Photography’ photoshoot for Friday because I dont know what effect the next lot of treatment is going to have on me. I know I look healthy and good (for me) at the moment and I want to preserve this. I don’t photograph well in candid shots so I think this is the way to go.
Posted by jaydub26 on March 25, 2011
Well, the email got results. Not just the one we were hoping for.
On receiving my email, Dr H acted on it immmediately which has affirmed my faith in him as my oncologist. Even though Middlemore radiology staff had still not reported on my scan – they were a little busy when I went on Tuesday…but still…. – he was able to access the scan itself and pull it up and compare it to the December scan, and see that it had grown significantly.
That was enough for him to be able to ring me and tell me that he believed it was definitely a liver metastases. We didn’t go into treatment options on the phone but this is what I do know from our conversation on Friday afternoon.
That he believes that it is metastatic
That because it is metastatic we are looking at control rather than cure.
That he doesn’t blame Middlemore for not picking it up in August because on the August scan it just looks like a tiny smudge or an enlarged blood vessel. It is only when compared to December and March scans that you realise that that spot was the start of something.
That the fact that my CA 15-3 marker, while above normal, is only 60 is good news because once it is a liver met, markers can jump very high even though they have been lower at initial diagnosis. The fact it is lower probably signifies slower growing/ less aggressive.
That we dont know whether Herceptin treatment has slowed down the growth or not. He said with ordinary chemo treatment, it either works or it doesn’t but with things like herceptin which are the targetted therapies there still needs to be more research/study done to know whether they can have a partial effect.
That while I was on the phone to him he was also putting a message through to his scheduler to make an appointment to discuss treatment options. (This was about 4pm on Friday so I didn’t expect to know until today when appointment would be – the scheduler has just rung me (9am Monday) and given me an appointment on the 30th March.
It’s been hard telling everyone – and everyone goes how are you feeling?
…and the truth is I actually feel fine (apart from the residual fatigue and aches and pains I’ve had all along) and psychologically I actually feel better in some ways – now that we know there is something definite we can start dealing with it rather than the maybe, maybe not fog we have been swimming in lately. I have always said the waiting the not knowing is the bit that does my head in.
Yeah we are dealing with control vs cure but that is all it is – I’m not terminal although one day I might be. It means I am probably not ever going to acheive remission long enough to be considered cured but as I have said in other posts you can acheive control for a long time these days.
Officially I was in remission 5 months the first time and 10 months the second time lets go for 15 or 20 months next time LOL
How is the family handling the news. About the same as me actually. Ever since I got diagnosed with IBC we have known it was a possibility so it hasn’t come as a huge shock to us. It is not something we wanted to happen, it is not the way I want to live my life but given the nature of IBC it was always a possibility regardless of how much we hoped otherwise.
OH is stressed but when I commented that I wondered whether I would need another spiral notebook ( I take one to all my appointments in which I write any questions for that appointment – and the answers) – I was referring to having so many questions and treatment that I used up the pages in this one. – His response was “I hope so ” when I looked at him for explanation he explained that he hoped I had several notebooks over many years of appointments/treatment.
OD was here when I got the call so was the first one to find out and after using a couple of expletives said “oh well life goes on” and then looked at me to see if I had taken offense. I reassured her that I knew what she meant. Life does indeed go on. Their lives and my life. Our lives may be changed and constrained by “Gertrude” but she isn’t what defines us. She went home and tweeted “F*** Gertrude… that is all”
MD’s reaction has been much the same – on Facebook she wrote ” Battle number 3 – here we come 😦 ” – I commented “and we will win AGAIN” and she was “yes we will Mum”
YD – well we had the ‘talk’ that the cancer has come back and that I will need to change to a new medicine to make it go away again. That if the medicine makes me sick I might not be able to go out with her every weekend like usual. That we would make a list of things she wanted to do and that by the time she came home for the whole weekend for her birthday (April) we would know a bit more about my new medicine and how it was going to make me feel and we would talk about who was going to take her to Australia etc. With her autistic tendencies/intellectual understanding we tend to give her time frames etc she can relate to – and we also don’t tell her any negative stuff she doesn’t need to know. I spent most of the weekend with her shopping and generally having fun one on one time with her – stocking up on clothes etc that she might need over the next few months. We prefer to do that shopping than get her staff at her residential service house to do it.
So there it is – I won’t know much more until my appointment but will keep you all posted when I find out – and now I’ve got to go and get ready for Uni – Life does indeed go on 🙂
Posted by jaydub26 on March 20, 2011
Today there is a Memorial Service in Christchurch to remember the lives lost in the February 22nd earthquake. I will be there in spirit. As I said in my post I am very aware it is their story not mine and in light of that today I would ask that you click through to the comments on that post by Bro and Cheryl which tells what it was like for them that day
Kia Kaha Christchurch
Posted by jaydub26 on March 17, 2011
My serenity prayer bracelet says ‘God grant me the serenity to accept things I cannot change, the courage to change the things I can, and the wisdom to know the difference.’ Events lately have made me realise that I have been possibly dwelling too much on the Accepting and not enough on the Wisdom and Courage aspects of that saying.
The following is a copy of a letter I sent my oncologist after I had a discussion with one of the clinical nurses before my herceptin appointment yesterday ( I have only replaced or removed names etc to retain privacy)
“Dear …Could you please forward this email to Dr H… as per our conversation, yesterday, 17th March 2011
Dear Dr H and team,
I have had my CT scan on the 15th March 2011,
After the review of the scan by the team at Auckland Hospital I would request that:
- If there is definite evidence of metastasis that an assessment be scheduled as soon as possible to discuss treatment options
- If a biopsy is required, to confirm metastasis, that this be scheduled as soon as possible with an assessment appointment with Dr H deferred until the results have been received. I see little point in an assessment meeting just to be told a biopsy is required, unless parallel planning for treatment is being done. It seems reasonable to delay the assessment if a biopsy is required.
- A quick phone call by Dr H or member of the oncology team, to advise whether it is biopsy or assessment appointment being scheduled, would be appreciated.
- I am making the assumption that the above will occur before my next Herceptin would be scheduled for the 7th April 2011.
The nurse at my Herceptin infusion yesterday,17th March, was able to inform me that my CA 15-3 markers have risen to 60 so I am aware of that.
I am also looking to make a formal request for copies of my scan reports and other relevant clinical notes, due to concerns raised by what I read in the clinical notes included in my CT scan request which I read while they were trying to place the line for the CT contrast.
The notes referred to in retrospect the ? on my liver had been since August 2010. I am concerned that the radiologist reading the CT scans and preparing reports for Middlemore appears to have missed this twice and that it was only picked up in the review by the tumour review panel at Auckland hospital after my assessment appointment on 13th January 2011 for both my August 2010 and December 2010 scans.
I have no issues with the standard of care I am getting from the Oncology team at Auckland Hospital but I am concerned about peripheral services. This especially when I had to chase up the CT scheduling at Middlemore,as of the 10th of March they had logged my request at Middlemore but nothing was flagging it as urgent on their system. They had not even looked at it and and had still not scheduled a CT appointment more than 2 weeks from when it was requested. I achieved a CT appointment by ringing the patient complaint line and they chased it up for me.
This concern has made me realise I have become a little complacent and I intend to be a little more proactive and ask more questions and be more informed and aware about my ongoing surveillance and/ or treatment.
Can you please expedite review and scheduling of appointments as soon as possible. Thank you for my ongoing care
I will hopefully know for certain within the next week or so whether I indeed have a metastasis to my liver but it is looking increasingly more likely.
Although my CA 15-3 marker isn’t extremely high it is high for me. The normal range is 0-30. Some people’s marker jump up into the 100’s. When I was first diagnosed in August 2008 my marker was only 70 and with my first recurrence Ocotboer 2009 it only went up to 45 so the fact it is 60 now – to me, that indicates that it is a probable metastasis we are looking at.
On thinking why I have been more passive lately and only thinking about the acceptance part of my serenity prayer bracelet, I have come to these conclusions. I think I was trying so hard to be positive and tell myself it was nothing that I didn’t ask enough questions or push for answers because I was scared about what the answer might be. I have also realised that OH has had the same problem – he doesn’t want to face the fact that my next step is to go truelly metastatic. He has been very quiet in the last two appointments with Dr H and I think that he is struggling to handle it.
I need to take back more control of my treatment whether ‘Gertrude’ be metastatic or not.
So as this post title says – No more Mrs Passive Patient!
Posted by jaydub26 on March 17, 2011
With Uni starting and us trying to get away for our wedding anniversary and then being sick and sleeping off a virus for my next ‘long weekend’ (Uni is only on Monday and Wednesdays on my part-time paper timetable so Thursday and Friday give us a long weekend each week this semester) I have been off-line a lot over the last two weeks.
I mentioned in this post that they had booked me for an urgent scan to be done as they were worried about something on my liver. That visit to my oncologist was on the 23rd of February and they requested that my CT Scan be done within two weeks. If you look at a calendar that means we would have a reasonable expectation that it would have been done by last Wednesday (9th March).
With us planning to go away (from 3rd-6th March) we had tried to find out when they would schedule it. We rang on the Monday after my oncologists to my local hospital (where I have to have my CT scans done) and my request wasn’t in their system then, leaving more messages before we went away got no response. I had hoped to come back to some notification of an appointment. I didn’t.
By last Thursday, post the timeframe that the scan should have been done by, I decided to ring again. They could tell me that the request had been logged but had nothing scheduled. “But it was marked as urgent, it was supposed to been done by yesterday”, said I. “OH” they said “we might be able to schedule it to be done on the 21st”. I was so frustrated by their lack of concern about ‘urgent’ scheduling led me to ring the patient complaint line – they went down and chased up my request and after looking at my file managed to get my scan pushed up to the 15th (today). I hated the fact that I had to chase it up and wonder if I hadn’t rung up just how long I would have had to wait for an appointment. There seems to be a major problem with how requests are logged into the system with nothing flagging them up as urgent.
Which leads me to today. I turned up to have my CT scan and they couldn’t find the vein properly in my left arm (my right one can’t be used due to the axillary node removal) to put a line in, this is where they inject the contrast during the CT. They ended up having to use an ultrasound machine to make sure they got the line in properly.
While they were fussing around they happened to leave me alone in the room with my clinical notes where I could see them. I glanced at them to see what was written about me in ‘medical speak’.
I sort of wish I hadn’t…
All the past history stuff I knew but the last couple of sentences had me rereading over and over to make sure I had read it right. It looks like my CT scans when initially read the radiologists have missed things. – now don’t worry it’s not that bad but what those sentences basically said was that in retrospect (on review) there has been a ‘?’ on my liver since the CT I had in August last year. That there was something on there then that wasn’t initial reported. It was still there in my December scan. but the phrase that really stopped me in my tracks differed in just one word from what I had been told verbally. I had been told there was a ‘possible’ metastasis. What I read today that word had changed to ‘probable’.
It’s just a semantic difference but to me probable has a lot more definiteness vs possible. Pollyanna Jaydub was merrily going ‘its nothing’ as it has been when I have got the results from other scans that has been born out. Now it looks like I am definitely heading for either a biopsy or if it has grown straight into treatment.
If I am lucky it could still be nothing but I am not as confident as I was.
Due to the muck-up in scheduling I have had to postpone my Oncologist assessment appointment that would have been tomorrow. The results from today would not have been through and especially he would not have had time to review them with the radiologist on the multi-disciplinary tumour review panel at Auckland Hospital ( where I get my cancer treatment) – this is where this ‘?’ has been picked up. I see a clinical nurse on Thursday before I see my chemo nurse and she and I will discuss how we handle setting up my next appointment. I personally don’t think I should wait for another assessment appointment before they schedule the biopsy if I need one. I would just rather they rung and said they were scheduling a biopsy and then me see the oncologist once that is done or if the ‘?’ has grown I won’t need the biopsy and they can schedule an appointment to just discuss the results of biopsy/scan or possible changes to my treatment.
I’m still hoping like hell that they have got that ‘probable’ wrong but I just need to wait now to find out. And we all know how good I am at waiting…
Posted by jaydub26 on March 14, 2011
OH and I celebrated 27 years of marriage on the 3rd of March. Yes, I married young, just a couple of months after my 21st birthday LOL. 27 years ago we sure didn’t imagine our lives would be where they are now, but we are still here – together.
We honeymooned all those years ago in a lovely part of New Zealand called Tutukaka at a motel that is out on a headland so the views are spectacular and it was always my goal to spend one of our wedding anniversaries back there. While the kids were growing up and YD was at home it wasn’t so much of a priority but when she had left home and I realised our 25th wedding anniversary was coming up I thought it would be an ideal time to go.
Unfortunately ‘Gertrude’ intervened – in March 2009 I was nearing the end of radiation treatment my skin was extremely raw from radiation as they had targetted it as well as underlying tissue due to the IBC cancer cells being in my skin as well. I was also having still having trouble with my ongoing portacath site infection. Not condusive to planning a trip
March 2010 – our 26th wedding aniversary. I had just started uni and I was also having problems with my white blood cell count being low from the weekly vinorelbine chemo treatments. Again we decided it would be a little to risky to go away (especially with my history of hospital admissions).
March 2011 – we made it!!
We didnt get to stay in the same unit but we both think the unit we stayed in this time was even better than the last time – this unit had the lounge downstairs and bedroom upstairs with balcony – what a way to start the day with breakfast on the balcony
The atmosphere is just so relaxing there – the only rush hour traffic is the fishing and diving boats returning to the harbour from their trips out to the Poor Knights and other islands
I even managed to walk the steep path down to the sheltered harbour beach – my fitness at the moment seems to be getting worse rather than better – admittedly I haven’t kept up my New Years resolution of trying to walk every night. But since Uni started I am trying to increase my incidental exercise.
- And I did and the effort was worth it.
- OH and I have decided we are definitely not letting another 27 years or even 27 months go by before we go back there again. As I have said over and over again in this blog being by the sea restores my spirit and I have to remember to not get so caught up with everyday life that I forget I need that.
Posted by jaydub26 on March 14, 2011