Wednesday, September 13, 2017

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 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 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 was great fun!

Tuesday, August 15, 2017

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!...

Wednesday, July 12, 2017

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 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

Wednesday, May 31, 2017

Next steps

Since my last  post, I have been accepted onto a clinical trial at the Alfred'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 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

Tuesday, May 16, 2017

Post Chemo update

Hi friends and readers...sorry it has taken me a while to write an update after my final chemotherapy and stint in hospital.  After Easter, I had another blood test and appointment with my oncologist.  At this appointment I had hoped to hear the news that the chemotherapy had done its job and my CA125 levels had been reduced to their normal low numbers....disappointingly, this was not the case and they had actually gone up to well above their levels when I was first diagnosed...I was shocked to say the least!!!!  What next I thought?  The doctor said that sometimes this test is not always the most accurate, so I was sent off for CT and PET scans....and at the end of April I returned for the results.  These too were not what I had hoped and prayed for....they showed I had more tumours growing, and not just one, but quite a few.  I had already gone through in my head that I didn't really want radiotherapy or more surgery, however had also made a decision in my head that I would of course do whatever was suggested by the doctors!  Well, I needn't have been too concerned about either of these options as because I had more than one tumour, the radiation could do more damage to surrounding organs, and I likely have too much scar tissue/adhesions from my surgery last year, so surgery was also not an option.  Yikes!  What next then?  Go home to die I'm automatically thinking.  No, the doctor suggested referral to be considered for clinical trials....they were to make a referral to the Alfred for potential trials there.  Well, a few days later, I received a call from the Alfred inviting me to come in for a chat about the possibilities.  The short story is that there may be a potential option, however my tumours aren't "bad enough", and also the type of Ovarian Cancer I have is a lot rarer, and also, I have come to discover, much more aggressive and often resistant to chemotherapy...the upshot of all of this is that I am needing to rely more and more on God and not so much on my own strength, the skills of the surgeons and the effectiveness of chemotherapy.  My mind goes from thinking the worst case scenario to being positive.  So I have contacted the doctors at the Alfred today to ask to be considered for their trials...hopefully I will have a screening appointment next week and then be able to start shortly after.  I have to say though, that through all of this, I continue to feel God's amazing peace, which really is the peace which passes all understanding!  I don't know what the future holds, but I do know that whatever the outcome, I can only win!  If you have managed to read this far, I thank you for listening to my ramblings and ask that you might be praying for me and my continued journey.  Will continue to keep you posted.  Lisa xx

Sunday, April 9, 2017

Last One!!

I completed my final chemotherapy Wednesday A week and half ago.  I had planned to write an update earlier, however things don't always go to plan.  I had a busy weekend after my final chemo, with our church camp happening at Phillip Island.  I was able to get to this thankfully.  It was quite a tiring weekend, in so far as I drove to and from, but I was able to rest up quite a bit and ha d a lovely time learning, connecting and socialising.  This past week has been a bit more of a challenge.  Towards the end of the week, I had high temperatures and having had chemo, this usually means one needs to seek medical attention,  given that I had a temperature of 38C two days running, and was chastised by a nurse I phoned who basically told me that if I didn't wish to end up in intensive care, that I should get to hospital pronto.  So, unusual for me, I did as I was told!!!  I headed off to the local emergency department and was basically admitted and had a plethora of tests including blood which the result was that my Neutrophils, or white blood cells, the ones which fight off infection, were down to zero!  I know!!!  So up to the wards I headed....and onto strong IV antibiotics.  The biggest issue for me having to be in hospital is leaving my kitties and not being able to visit my Dad where he is now.  Plus the added thing of actually feeling reasonably well, and not being able to hang at home doing stuff!  Oh well.  The great thing is that the staff have been lovely, I've got some magazines and a small amount of craft to complete.  In some ways it is probably good to have then forced rest as I quite likely may have overdone things this weekend.  Anyway...hope everyone is enjoying their weekend.   Chat soon.
This photo was taken from my hospital window yesterday afternoon

Tuesday, March 14, 2017

5 down, one to go

Yes readers, I had my fifth Chemotherapy treatment last Wednesday and hopefully only have one to go.  I haven't asked the doctors what the next steps are beyond my final chemo session.  Partly because they probably won't know until I have tests to see what the cancer is doing, but also because I can only process so much information at any one time.  Anyway, my last treatment went reasonably well....I still had high blood pressure, but I think that was due to the fact that I had driven to the hospital and had a difficult time finding a parking spot....but thankfully the pressure went down when the nurse took it with the manual reader and the treatment proceeded without incident.  I have noticed a pattern afterwards in that the first couple of days I feel reasonably well and then after three to four days, I feel the effects of being fatigued, tired and with reduced sensation in my feet and hands.  So it is now Tuesday and I am meant to be back at work today, however I have such a sore throats and dry mouth and sensitive fingers that I probably need to take today off.  Thankfully my work has been very understanding.  I am also beyond thankful that I have generally been able to work full time throughout my treatment.  I have already made the decision for my next treatment that I will arrange to have a few more days off afterwards in order not to disrupt my work too much.  Th other biggish thing happening this coming week is that my parents home is being sold.  Dad moved into residential Aged Care back in January following Mum's death last year and he has settled in well, however we do need to sell their home.  I am a little sad as it is the end of an era, but know that it has to happen.  Well, that is about all I have to report on today....once again, thanks for reading my blog and have a great week.

Sunday, February 19, 2017

A chemo update

So, I've not done an update on my last Chemotherapy as I was meant to have it over a week ago...yes, I said Meant!.  I arrived all ready for the day, however with the checking of my blood pressure and other vitals, my blood,pressure was apparently very high, as was my heart rate.  This meant a host of other tests including an ECG, CTBscan, urine tests and more blood tests!  All the while the doctors and nurses kept asking me if I was in pain and so,on....I felt,fine....I was just feeling quite stressed because I was due to try a new chemo drug and was obviously very anxious about it!  Thanksfully I had a dear friend come and spend most of the day with was an extremely long day....I arrived at the hospital around 8.30am and didn't leave until after 5.30pm....all without Chemo!  I was extremely disappointed....I'm on a schedule don't you know!   I was all ready for number four to be done and dusted!  Well, the upshot of the day was that there was nothing wrong with me...apart from the blood pressure, so I have been put on tablets (which my GP had already done, however these are different), and I just need to minotor myself. So they had booked me in the following week, the Wednesday just passed for my number 4 chemo...again my BP was high.....however they went ahead with the treatment anyway....thankfully!  Again I had two dear friends spent some of the time with me...which was such a blessing and a distraction.  The day went smoothly, with the new drug going ahead without incident!  I felt pretty exhausted that night, but was fine the next day, however the past few days have seen me tired I have just been trying to take things easy....I must say, i,am EVER so thankful for how I am being sustained and strengthened....people are totally amazed that I am able to work throughout this whole thing (apart from the treatment day's and doctors appointments, I have really had to take very little sick leave....).  May this continue.....I thank God daily for this provision!  So I now have only two chemo treatments (God willing), and then we'll see what happens next.  This coming week I am attending a workshop called "Look Good, Feel Better" run by volunteers to help people going through Cancer treatment apply make up and hair things to help them feel more "normal".... I did actually debate whether or not to go as I rarely wear make up and have been managing reasonably well with my hair loss and wearing a wig....the main challenge is how itchy it sometimes is!  Anyway, it might be nice to connect with others on a similar journey.  Will keep you posted.  Thanks again for reading my ramblings!  Hope you're having a great weekend.  Lisa

Sunday, January 22, 2017

Half Way...let's hope so...Chemo Number 3

I had my third chemo treatment this last week....and I'm halfway through my I won't know until all 6 treatments are completed.  Because of the side effects of my 2nd treatment, I was only given two of the three drugs...which I was quite relieved about as the side effects from the Taxol drug were severe....and I am still feeling their effects surprisingly enough.    The strange thing is, is that even from this weeks treatment, I am now experiencing more side effects....including an incredible tiredness...and over the past week my hair has been falling started off ever so slightly, with me noticing a lot more hair in my hairbrush than usual...then whenever I tugged on my hair it would come out in several hairs and then towards the end of the week my hair was coming out without me even needing to touch it was time.....I had actually booked a visit to my hairdresser earlier in the week so Friday I took myself off and she basically gave my hair a very short cut, and then got out her clippers and shaved my hair very short.  I must admit, I have been struggling with what to put on my head.  I had bought a wig recently as well as a turban head covering, but everything feels weird.  I have been reluctant to leave the house too, feeling very self conscious.  But tomorrow I have to go to work so will have to suck it up!  One thing I found difficult was when I saw a family member and was brave enough to show my head and all they wanted to do was take a photo!  Really!  I know I seem to coping with all of this reasonably well, but I did find this quite insensitive...oh well....all of this is teaching me a great deal about myself and others!  Well, that is my latest...I do pray that the tiredness I'm feeling will subside very soon and I can continue to go to work taking minimal leave.  Thanks for reading my ramblings.  I hope my frankness and honesty is a blessing.