More reflections....warning...is very long!

Well, here I am with another reflective post.  So, as you know, the trial I have been on for the last 6 months has stopped working it would seem.  I have come to the realization since my news this week, and the fact I have been offered to participate in another trial, that my own perception about how trials should work and the actual reality are quite different.  I feel I am somewhat qualified to make some general comments and observations as I work in healthcare myself.  As a bit of background, I am an Occupational therapist and our aim in general terms is to use occupation, or activity to develop, restore, maintain or increase people's abilities to complete activities of daily living.  In my area of expertise, community health, I also consider the person as a whole, unique person, with differing physical, social and psychological needs.  So in the context of my own world, it is that I make these observations.   Firstly, from the outset, this is not a criticism of the treatment I have received....the staff where I attend are the most delightful, friendly and caring people....in fact, I have joked occasionally that I have a little crush on them!  But this week being given the news that I am unable to continue on the trial has also made me aware of another aspect which I had previously not really considered.  And this people, is the reality that I am a human guinea pig.   Without these trials, many new drugs would not be able to get to the point where they are released for general human use...  It was a shock to be told that you are coming off a drug trial immediately because it is no longer working....there is no grace period, or we'll give it another three weeks to see what happens...BAM....that is it....and if I am really honest, I think had there not been another option to trial, then I would have most likely been sent from the clinic and back to the general hospital system for palliative care....and the fact is, if the next trial is unsuccessful, then this will be my reality.  I have said all along to friends that I want to be placing my trust in my God, not in doctors, trials and drugs...though sometimes it is easier said than done.   Then I think of all the people who have travelled this clinical trial road before me and how they manage to deal with the reality of one day on a trial, the next day, not....I'm not sure if there are counsellors or or people within the clinic I attend to help the patients through this transition...because the other brutal fact, is that the clinical trials are a last resort....I have had to come to terms with this...even though I am fairly early in my cancer diagnosis, the fact that the chemo didn't work, and that more surgery and radiation also weren't options, meant that I too am in a last resort situation...and that, to be honest, is very scary...as I have said previously, I'm not ready to die, I feel I have much more living to do....plus, I really don't want to die before my Dad!  So the purpose of this massive tome is to bring awareness to others that whilst clinical trials are a fantastic opportunity in themselves to hopefully slow down or halt the disease process, they are still ultimately big business (pharmaceutical companies), trying to develop drugs which will also potentially bring them big profits, and by a trial ceasing to be effective on an individual, then this individual is no longer any use to them....and probably to keep them on a trial, will skew their results...I am sure the people running these trials, might be shocked at these comments, however I think that perhaps this might be an area where they consider these implications on the actual human who is hoping in maybe a miracle.
I started writing the first part of this just under two weeks ago, when I got the news that the trial wasn't working....I have since had a couple of chats with the staff at the Clinical trial centre....I think they were a bit shocked at my thoughts, as one of the staff obviously chatted with the doctor whom I see.  Today I had my appointment to discuss the next trial and he asked me if I was OK...he went on to say that he had been talking with the other staff member who I had told some of my thoughts to last week...it was good to have an open and honest discussion and that I wasn't unhappy with any of the treatment, but just that I was being reflective and very pragmatic....he also commented about how hard it is for people to be told they have to cease a trial and has wondered himself if it is too abrupt....the great thing about my Doctor is that he only works as a clinical trial doctor a few days a week, the rest of the time he is an oncologist seeing people from the start to the end of their cancer journey...so I am reassured he has some understanding of where I was coming from.  So, the outcome from today is that I have some more blood tests on the weekend, an echocardiograph and then start the new trial on Monday....the big thing for this will be the need for regular infusions...which means the insertion of a cannula into my veins...so all, prayers for my veins are much appreciated!  That they will be able to find a vein, and that the vein will actually work!
If you have read this far, I thank you from the bottom of my heart as it has been VERY looooong!  Will keep you updated as things progress...

New Challenges

Hi friends and readers, since my last post and the good news, I have since had another CT scan.  Unfortunately my news this time around isn't so great!  It seems that whilst the trial I have been on was successful in eliminating and reducing two of the tumours, it hasn't been so successful in preventing others from growing.  They have discovered the growth of more tumours, as well as an enlarged lymph node.  So now I am off the trial.  I have however been offered to participate on a different trial, an immunotherapy trial.  So, should I choose to go ahead with this, it will mean more intensive hospital visits and a different drug...not tablets, but an infusion of some sort.  I must admit, this has been a huge shock to me...possibly more than my initial diagnosis....I got home after my appointment yesterday and went straight to bed, feeling absolutely sick to my stomach...so much so that I couldn't eat....which is a rarity for me!  This latest news just presents a whole lot more uncertainty and an acute awareness of how fragile and precious life is, and how we really don't know how long we have on this earth.  Well, if you've read this far, I thank you and would ask for your continued prayers, good thoughts or whatever you think might help with my latest challenge.  I continue to know that I am in the palm of God's hand and that He is in control and will continue to carry me on this journey, no matter the ultimate outcome.

Ponderings

I've been reflecting lately about the last 12 months or so of my life.  I guess Cancer and other "trials" will do that to you!  It has certainly been interesting with what has come up for me.  So here goes with some of my pondering!  I have been overweight for much of my adult life...yo yo dieting, never really losing very much weight, always self conscious of parts of my body which I deemed to be less than adequate and not to be seen in public!  Most particularly my legs....my Mum had what you would call elephant or tree trunk legs, and whilst mine aren't exactly the same as hers, I do have large calves.  Anyway....I recently bought my first pair of jeans in about 40 years!  I have always struggled to find jeans that fitted my legs and backside, but weren't swimming around my waist, because, in comparison to my legs, I have quite a smallish waist!  And also because the jeans would show the shape of my legs!  For many many years, I used to sew my own trousers...which had extra wide legs, to "cover up" my legs...but it's funny you know.  When you wake up from major surgery and discover that you have had a catheter inserted, and certain private areas shaved, some things just don't bother you any longer....also, having poking and prodding every few weeks, blood tests, urine samples and weight taken some things have just stopped bothering me so much....don't get me wrong, you are NOT going to see me swanning on the beach in a bikini any time soon....but I am feeling a new found confidence in my body, with all of its lumps, bumps, scars and other imperfections.  This includes embracing my new, shorter hair and it's colour....from being a shoulder length blonde (with help) to VERY short grey....I'm loving it more than I ever expected....and I think it shows....I have so many people comment on how "well" I look....yes, I have cancer, but I have really not felt unwell as such...this has been a miracle in itself, which I give thanks to God daily for this fact.

I have recently bought this book by a favourite artist, Lisa Congdon, called A Glorious Freedom...which is a collection of stories about women over 40 who are living/have lived amazing lives....the subtitle is "older women leading extraordinary lives". Apart from the fantastic women showcased, it also has Lisa's wonderful illustrations throughout....and it totally inspires me to live my own life to its fullest.  I grew up hoping and expecting to get married, have children, etc etc....now, that didn't happen, and whilst as times I can sometimes wonder why,  I am really thankful to be feeling very content with the way my life is with all its challenges and unforeseen circumstances.
So anyway, I'll provide a bit of an update on the clinical trial....the really good news is that one of the tumours which is being measured has completely disappeared....I asked my Doctor at my last appointment, could it have moved somewhere else around my body...no was his answer.  The not so great news is that there is a spot on my liver, which is showing on the CT scan, however it may well be the same thing which showed on an earlier PET scan and is only now showing up on the CT scan....anyway, the doctor didn't seem to be too concerned as I know they'll be keeping a close watch to that is also reassuring.  The other good news is that my cancer count was under 20 so that was a relief too.

Well, if you have read this far, I am impressed and I thank you...and I hope my words have been an encouragement to you...see what I come up with next time!

Footnote....I started writing this a few weeks ago...since then, I have been suffering from a major cold and cough and have generally been feeling unwell, especially from all of the coughing!  I am due for my next appointment this coming Wednesday so hopefully I'll write an update soon after...thanks xx

An update...what else should I call this?

I really do need to come up with some better post titles don't I???  My creative brain isn't very creative at the moment....anyway....I had my three weekly check up today, as well as an oncologist appointment at Box Hill Hospital yesterday.  Box Hill is my primary care hospital and they are the ones who made the referral for the clinical trial.  I hadn't been to an appointment there since starting on the trial as there really wasn't much they were/are doing treatment wise...but it was good to be able to go yesterday and chat with one of the main specialists who I had seen a couple of times previously...I felt it was good to be able to talk about how positive everything is going with the trial as I am sure it is difficult for the staff working in cancer care seeing people who may often be really unwell.  Today was another lovely visit to the Alfred as well...the main research assistant is on holidays so I saw her colleague who is also a lovely chap....though it sounds like he has been run off his feet being one person down...I also had a lovely chat with the Doctor who is looking after me so all in all was a positive day...my next CT scan is in 3 weeks so will have more of an update then.  After my appointment I visited one of my favourite shops as I had decided to take the afternoon off, instead of rushing back to work...so that was nice too...I popped in to a shop called the Essential Ingredient, which sell wonderful ingredients for all manner of cooking adventures, and then I popped into Zumbo for some macaron to take to work tomorrow as a treat.... Tonight I am going to my niece and nephews school production of Peter Pan so that will be fun....well, that is all I have to report for now...see you again soon.  The photo below was taken at a place called ArtVo...which I took my niece and nephew to the other week...it was great fun!

Update time

Hi friends, thought it was time I updated you with my clinical trial.  After I received the great results from the CT scan a few weeks ago, I then received my blood results and unfortunately my red blood cells had gone down as had my liver function.  The upshot was that I had to be taken off the trial tablets for a few weeks, with a blood test every week for about 3 weeks.  Thankfully my red blood cells went up pretty quickly, however the liver has taken a while longer to get back to functioning.  Thankfully last week, I was able to resume the trial drug, but at a lower dose...though the doctor reassured me that the drug is quite potent and can have positive results even on a very small dose.  I was so thankful to be able to continue on the trial...and have my next CT scan next Monday and then blood tests on the Wednesday at my next hospital appointment.  I would appreciate your prayers for the CT scan and the next lot of blood tests that my liver is functioning normally.  One other good piece of news is that my cancer count was down to 20!!!!! Which was wonderful news.  Have a great week....I'm in Sydney for a conference for a couple of days...hence the photo of the Harbour Bridge and sunshine!...

Long overdue update...and good news!

Hi there readers, the last update immade on here was telling you about the clinical trial I had been accepted onto.  It is now 6 weeks since I started on the trial.  Basically it is quite straight forward in that I take tablets with breakfast and dinner.  Initially it was quite time intensive as I had to visit the centre 6 times for the first week and then less frequently.  I am now only needing to go once every three weeks.  The good news is that I had a CT scan on Monday this week and visited the clinic today to get my next supply of tablets and to get the results from the CT scan.  So, drum roll.....one of the tumours has reduced in size by half and the other tumour has remained the same.  The other great thing is that they haven't grown larger, or increased in number.  I am feeling so thankful, especially having felt earlier on that I didn't seem to get any good news and trying to stay positive was a challenge!  It is also so great to be able to give family, friends and work colleagues who have all been so supportive some good news too.  This journey isn't only about me, but those who I love and love me in return.  I was also encouraged today about how pleased one of the research staff who I am primarily dealing with was with my news...she said how it had been a hard week the previous week because some of the other participants on trials had deteriorated and also someone had died.  I a, continually amazed and so thankful for the love and care I am receiving on this trial.

On a completely different note, last week I enjoyed a few days away at a place in northern New South Wales called Halcyon House.  What a wonderfully relaxing and luxurious place it was....and completely done out in the most stunning decor...primarily with lots of blue and white...which for those who know me, I was in seventh heaven!  I have included a couple of my favourite photos for your enjoyment.  Thanks again for reading and for your love, support and prayers. xx

Next steps

Since my last  post, I have been accepted onto a clinical trial at the Alfred Hospital...it's actually with an organisation co-located on the Alfred site.  Basically I was informed about three different trials, however the only one I was really suitable for is this inhibitor study as the tumours I have aren't considered to be solid (they are fluid filled).  Anyway, I was happy to start this trial, as I really had no other treatment options!  The trial started today and part of it relates to the uptake of the tablet with  or without food.  Hence, today I had a high fat breakfast which had to include eggs fried in butter, toast with butter and either bacon or sausage.  I also chose this option because it included an apple.  Thankfully I was also allowed milo in my milk...because I really don't like plain milk.  I will be visiting the clinic for three days in a row, then two days off, then another three days in a row...though next week I have the tablets without food.  After the initial week, I then have a few appointments a week apart, and then eventually, three weeks apart and the drug twice daily.  I will be interested to see    how it all goes.  I had hoped that today they might tell me that I can't go on the trial because the tumours had not reappeared on the CT scan and that my cancer markers were down to nothing!  I am very thankful though that my CA125 had reduced by over a third since my last oncology appointment.  So, that is it for me now...today I am spending the day in bed and having my obs and blood taken every hour, until around 6.00pm.  Then I'm back here for the next two days for further bloods and observations.  Thank you for your continued interest in my journey, for your prayers....I will continue to write updates here as I am finding it very therapeutic to write about my journey.  Cheers