Travelling My Road

Less than 5 percent of all pleural mesothelioma patients survive for 10 years after being diagnosed, which often reminds me just how fortunate I am. It also is a glowing reminder that survivors can beat the odds.

21 Aug 2018:  PET/CT scan on the 16 Aug - what can I say ......  I know the results....   My body is grasping for breath and I'm wheezy.  Result shows that the Meso is back in the same location as last year (near the heart aorta and pulmonary artery).  Not happy is mild...   Looking on the good side - I have an appointment next week to see an radiation oncologist to see if pin point radiation is an option.  Feeling well today, so will go with that.  If I can stay feeling well, that's all that matters

July 2018:

28 June 2018:  Oh my what a difference a couple of weeks can make.  I'm feeling well.  No more spasms and cramps in my surgery area.   It was my birthday recently and I feel that I am still partying.  Trying to enjoy life each day.  In the morning I am still coughing and bringing up phem, but I am hoping it is the time of year and my body will fight it off.

20 May 2018:

22 April 2018:

20 March 2018:

20 Feb 2018:  Oh what a wonderful day - well now that it is over.  Results from my scan show "all clear !!"  Those words are so great to the ears.  The ones following "for now" aren't so good.  Can admit that I was feeling very anxious prior to getting the results.  Now it's a big relief and I want to experience the world... but ..... not just yet.  The immune injections will continue at the same fortnightly intervals until next scan in 3 months.  Then if all still going well extend the time period.
In the meantime we are going camping and I'm booking a cruise to the pacific islands next month.  Can work the immune vaccines around it and also try out a new house sitter who works in the chemo ward.  Doctors are just as happy as I am :)

29 Jan 2018:  Happy New Year.  I feel happy that I am here and enjoying my life, but I also have a friend who is dying (from Cancer) and it is not nice to watch.  It is like I am looking into my future. It doesn't help that I feel like I am experiencing more pains than previous months and short breath/cold sweats. But then that could also be down to the high humidity and high temp at the moment.  All these thoughts ...  as I keep remembering the Dr saying after chemo..  well this has put you back to this time last year.  I was happy at the time, but this time last year was when I caught an infection and the Meso started to return.  Scan in a 21 days (who's counting) then I will feel better - I hope.

25 Dec 2017:  It's Christmas day and I have bought no presents, not expecting any presents as I received my present last month of being "present"...  Now the aim is to say the same next Christmas.
I went to NZ for a couple of weeks (in between immune injections) and helped my parents move house.  During this time I did housework and lifting that I don't recall doing for some time.  The weather was lovely and my breathing felt "normal". Each day I did some walking.  Since being back in Brisbane I have noticed that the heat/humidity really knocks me around.  Roll on 2018

24 Nov 2017:  I've got the biggest smile I think I've ever had.  The scan shows no change from the last one..... so no Meso visible.  I really feel it is only people that travel down this cancer road that know what it really means to receive the results.  Doctor is also pleased, although I did pick up the wording of "for now".  So I am going to enjoy life as much as I can.  My white blood cell levels have returned to normal and something else that I can't remember.  Anemia better, so I can stop the iron pills and B12 injections.  Gosh I am pill free.....  It is now 5 years since I was first diagnosed and begun this journey of fighting. The time has passed so quickly when I look back.  Hoping I can do it in another 5 years.  Vaccines are going well, (had 3 now) no bad reactions that I can tell. Doctor says it is too early to say if the vaccines are making any impact on the meso.  Time will tell

23 Oct 2017:  What a difference a few weeks make.  I feel more like the me I prefer :).  We went away for a few days and no problems.  Today I commenced my first immune therapy injection.
I have been told that they/me have been able to produce 42 vaccines. I'm still trying to absorb that as when I did this a couple of years ago I had 15 and thought that was good.  Plan is to have them fortnightly to start and see how things go.  Of course there is no guarantee that this will do anything at all, but I am feeling elated and positive at the moment.

20 Sept 2017:  Starting to feel like the normal me.  Although the anxiety is still high and I have been told that my blood pressure is slightly high.  A frustrating few weeks giving blood and waiting for results to find out if I will be able to go on the immune trial.  At the last appointment the Dr has said that 3/4 of the results have come back and all positive, so we are going ahead and I had my blood harvest procedure.  2 years ago I did the same thing and no problems.  This time I vomited several times and felt unwell the whole day.  I think it was mainly due to very high anxiety, thinking about the cost and also this better work, I don't have many options left........

20 Aug 2017:  What a roll a coaster few months... After round 3 of chemo and feeling rather lousey the whole time I had a PET/CT scan.  All clear :) !!!  I'm feeling elated, but also feeling " for how long?".  Then the oncologist mentioned a 4th chemo.  Ohhh why when the scan is clear.  I can feel my body struggling with some day to day activities, I don't remember the fatigue being this strong.  Also I think I have a bit of depression from not being able to live my normal routine.  On the happy side, my parents and sister came and stayed with me and helped with daily chores and kept my morale up.

1 July 2017:  Round 2 of chemo over with.  Gosh it's hard to prepare knowing that I'm going to feel so ill.  But I've done it.  Now enjoy life for a couple of weeks.    Nearly didn't have round 2 of chemo as my white blood count below level, but consultation with hospital and Dr and done. Now I'm very cautious as so many colds and virus's around. Been hard staying away from everyone.  Dr Horwood mentioned that they haven't been able to locate my tissue, but maybe able to use a genetic vaccine :)  I have an appointment with Dr Nicols 24th July.

20 June 2017: It's my birthday -  Why do I feel - well I've made it to 55yrs but is it going to be a struggle for each year/month from now on.  It has been a very emotional month. Lots of medical appointments and endless waiting.....  Out come is that I can not have surgery due to the location to the Meso (back of heart near arteries) Can not have radiation (already radiated out). Trying to find if there is any tissue from last Meso in storage so I can have another go at the immune trial. Chemo is only option at the moment.  3 chemo at 3 weekly intervals and then a scan to see how I'm travelling. 1st chemo was Fri 2nd June, next in a couple of days.  A week of throwing up and feeling very ill and no energy. Thankfully feeling well now and able to enjoy our birthday.  On a positive feeling,  the annoying cough that I thought was a cold disappeared completely the day after chemo.

19 May 2017:  Meso is back !!  Feeling a bit shattered and devastated at the moment.  As I have been feeling so well, I along with lots of other family and friends thought that I had beaten this rotten cancer.

18 April 2017: Back home, from our big trip to the other side of the world and back again.  Had a lovely time.  Health stayed well apart from a cold on the ship.  Feeling positive.  Sad news that Lou Williams has lost her battle and past away.  She fort her battle for so long and so hard.

26 March 2017:  Have spent the month cruising from Brisbane to Barcelona,Spain.  Enjoyable trip. Did catch a cold along with everyone else, but fought it off quickly and enjoying my self.

17 Feb 2017:  Visit to Dr Horwood.  My recent scan shows a change and possibility of Meso returning.  Although have recently had a bad chest infection and it could be that showing up.  Has requested that I have a PET/CT scan when I return from our holiday.

26 Jan 2017:  Wow this month has gone past so quickly.  Went to NZ and spent time with family for a couple of weeks.  Feeling well.

Sun 25 Dec 2016:  It's Christmas day.  Still feeling well, although constantly having pains/soreness around the surgery area.  New symptom of pains under chest/ high stomarch after eating.  I think it could be the hiatus hernia, so will try and keep note of what I am eating and quantity.  Lou continues to beat the odds and is sending messages to warriors from her hospital bedside.  There have been some mixed comments on the effect of the drug Keytruda on those taking it.  Some are feeling so much better, others it has made no effect.

Fri 25 Nov 2016:  Spring fever has hit.  I'm cleaning out cupboards that haven't seen daylight for 5 - 7yrs.  Amazing how you can forget about a lot of normal chores and items never used, when your health becomes the priority.  I am feeling well and tackling one cupboard at a time, with lots of breaks :)  I know it takes me alot longer than liked, but it's getting done.  Last week I went out and within hours had a sore throat and started coughing.  A week later and I am still getting over it, but I AM getting over it.  Still very sore in the surgery area from all the coughing, but improving daily. Our Warrior leader Lou Williams remains in hospital and appears to be fading. Lots of tributes and well wishes are being sent to her for all the great work she has done for the Asbestos community.

Fri 21 Oct 2016:  Still MESO free!!!!!  What a wonderful feeling.  Hard to describe unless you have been in a similar situation.  Oncologist is happy with my "No Change" and has suggested I go to 6 monthly check ups.  This will be after Feb as I have booked a holiday and will feel more confident with the knowledge of all OK before travelling.  On the 19th Oct 2016 I went into Brisbane City to a Asbestos conference and then attended the "Meso warriors" afternoon tea.  It was great to catch up with a fellow warrior who is battling her Meso by going completely natural and wining.  Was dissapointing that Lou Williams couldn't make it as she is too ill to travel, as she is the wonderful lady who started the group.S

Mon 26 Sept 2016: Back to living life...  Full into my craft (patchwork) - yet to finish the quilt project I started a couple of years ago.  Health has been good.  Not running around doing all that I would like to, but no worse and adapting to my restraints.  I have the 4 month check up soon and feeling confident that all will be well.

Mon 15 Aug 2016:  Reading back a year ago, I could just about write word for word from Aug 2015. While I was away on a cruise -  I went down in a heap a couple of weeks ago.  Fine one day and coughing and in lots of pain the next.  A virus going around.  It took all my energy away.  I kept away from everyone, took antibotics, vitamins, drunk heaps of water etc.  Then each day I started to feel a bit better.  What a great feeling to observe your body actually fighting off the virus and healing :)

Thurs 28 July 2016:  Another month gone by successfully.  A couple of slow days with pain in my side and shortness of breath, but took it easy and next day feeling ok.  I tend to think that maybe I could have been on the brink of catching a winter virus, but my immune system fought it off.  Been taking immune boost/multi vitamins every day (extra when feeling low).  Still tend to wake up early and then feel uncomfortable so get up.  Haven't heard anything from the law firm who came and interviewed me?  Maybe I wasn't interesting enough.  Don't want to think that they are busy with newly diagnosed clients.

Wed 22 June 2016:  Gosh I'm still smiling.  Been celebrating my 54th birthday. A couple of years ago I couldn't think this far in advance.  Now I am planning how to spend next year.  My husband turned 60yrs on the same day and he decided that he wanted to celebrate with a few people at home. Ended up being 56 people.  I have never catered for that many people before, let alone after 2 rounds of Meso....  Well I did it!!!!  Like most days now, I do a little bit and rest.  So a lot more preparation required, but acheivable.  On the 8th June I was interviewed by a lawyer from Turner Freeman.  They want good stories for a brouchure to give newly diagnosed clients.  Looking forward to reading the article.

Tues 24 May 2016:  I'm back and smiling big time....  Had my 4 month check up and I'm still Meso free!!!  Next appointment in another 4 months.  I'm starting to feel rather special.  Dr is hoping to do further trials and I have agreed to volunteer in anyway to help with research.  The pains I was/am getting are more than likely mussel and nerve damage from treatment, and unfortunately have to live with it.  The shortness of breath is also something I will probably have as 3/4 of left lung damaged from surgery/treatment.  Oh well as long as I know it's not Meso returning.

Thurs 21 April 2016: Back to reality.  On a cruise and I catch a flu virus so easy and it knocks me in a big way.  Took antibiotics, vitamins and painkillers, plus lots of resting.  Had some painful spasms in the surgery area of low back/left lung and high rib/chest area.  Also shortness of breath and lots of coughing.  Not much fun being on a ship when unwell.

Wed 23 Mar 2016:  Going so well!  Keeping days full with my craft work, morning teas and lunches with friends.  Also planning next trip.  No time for being ill.

Sat 27 Feb 2016:  Back from a month in NZ.  Had a wonderful time catching up with family and friends.  Health stayed great and no need for any antibiotics.  Panadol only needed a couple of times and I think that was due to over doing the tourist exploring.
Travelling around NZ and feeling great

Tues 12th Jan 2016:   Oncologist appointment - Scan results  -  :)  Still All Clear
Big relief as the past couple of days been feeling a bit sore and breathless.  Now that I know the scan is good, I'm feeling much better. Next scan now in 4 months time.  (Getting Better).
Down side is the Dr's comment of "I am one of two patients doing well".
Now full steam ahead planning a trip to NZ in a couple of weeks.

Fri 25th Dec 2015:  Christmas Day :)  And feeling Great !!!!
A few weeks ago I came down in a crashing heap with a virus, but the immune system fought it off (with the help of some antibiotics) and now I well enough to host a dinner party for Christmas. Bring it on........

Sat 21st Nov 2015:  Big day in Brisbane city meeting other people affected by Meso, either having it or a loved one having/had it.  Was great to meet Lou Williams as she has done so much to bring awareness and also bring together many people afflicted with this horrid cancer. Was a lovely day and totally exhausted by the end of it. Within hours of being home I came down with a rotten cold. Concerned that others may have also have it I sent out emails/text messages.

Fri 23rd Oct 2015:  Anniversary time.  October 2012 was my first diagnosed Meso.  I have been through a lot since then, and now enjoying life.  Around home I have attempted to do spring cleaning and gardening, but run out of puff quickly, also pain creeps in. So doing it in small doses :) Generally - Feeling good physically and mentally.

Fri 25th Sept 2015:  Oncologist appointment to see how I'm travelling.  Feeling the best that I have for a long time, although I still (and always will) encounter moments of breathlessness and pain. Even so, with the positive thoughts, still very anxious about the results.  Scan shows all clear!!!!
Only down side that I still remember is the Dr saying "for now".  Next scan in January  (after the Christmas holidays).  When home and read the CT report, it is noted that I have hiatus hernia.  Maybe that explains my burping and discomfort when eating.  Wonder if that is caused from the radiation or just something that would of happened anyway.

Wed 19th Aug 2015:  Well I went down in a heap a couple of weeks ago.  Fine one day and coughing and in lots of pain the next.  A virus going around.  It took all my energy away. Thank goodness for the internet and good friends and family.  Feeling much better now and we are going on a road trip to the Whitsunday's.  That will be a test to see how I my side/back hold up with the road travel.

Fri 17th July 2015:  Going so well, that I have organised a family gathering at our home.  I haven't done that in years.  Get pains every now and again, but something that I still have to learn to live with.  Mentioned to a friend, it is like a decade or two has been removed from your fitness.  Most people age gradually, but this happens so quick, it's hard to adjust to the knowledge that you aren't going to be the same person again.

Fri 26th June 2015:  Back to reality.  Came down with a virus within 24hrs of arriving back in Australia.  Antibiotics needed.  Took a while to get over it, but I Did!
3 Monthly check up.  All Clear !!!!!
So happy.  It has been 3 months since I stopped the trial injections.  As the doctor said, this is not a cure, but hopefully it stays away a Very Long time.  Next check up in 3 months.

Sat 16th May 2015:  The last day of our 12 day UK tour ending in Warwick.  We have had a brilliant time.  I am feeling So much better.  Get puffed out on a few walks, but have to be sensible and take the lift with the elderly people with their walkers.  It's a shame, but I am constantly thinking that I will be asked why am I using the lift (as you look fine).  It's only when I go white and have trouble getting the words out, that people tend to start to understand.  Love England countryside and the way I am feeling at the moment.

Wed 15th Aril 2015:  I am in Port Elizabeth, South Africa enjoying the Shamwari Game Reserve. This is all part of our journey cruising from Australia to England.  So far I'm battling with virus's and constant sore throat.  I have taken antibiotics and popping vitamin's and starting to feel better. Unfortunately it appears that the whole ship in contagious. On the plus side NO new pains of the Meso kind.

Wed 19th March 2015:  Another clear scan :)  I was so relieved and happy.  As I have been trying to do more and more, I was half expecting a good scan, but there is always the thoughts going on behind the scene (after all most of us meso warriors had no idea that our symptoms in the beginning would lead to this current life). I know that I had said that if it was a bad scan I was still intending on going on my planned holiday, but I was very anxious about the results.  A few people I know are currently battling a virus that is around.  Naturally I am concerned that I don't get it and am trying to be extra careful.  I'm not sure if it is my age (50's), or my history, but I really feel like saying "suck it up - you've only got a cold!!, I wake up (bonus) and cough and spit for a few minutes every day and often have to take pain killers. And you don't hear me moaning and groaning all the time".  I get on with life as much as I can, even if it is only to sit and do a bit of my craft work.

Friday 13th Feb 2015:  Another month has flown by.  I have been feeling very sore and popping a few painkillers in the evening, but not caring too much as I have been doing stuff that I haven't done in at least 2 yrs. This week I mowed the whole of our 1/2 acre lawn in one go.  Cleaned windows, helped David lift and move stuff.  All chores I haven't done in a long time.  End of this month is my last Immune Trial injection, plus my 3 month PET/CT scan.  Trying to keep busy and not think about it, but the scanxiety is starting to kick in.  Been planning my up and coming holiday to England and still haven't been able to find a health insurance that covers mesothelioma.  Doesn't go down well. Will just have to stay healthy.

Friday 16th Jan 2015:  Wow that month went fast.  I had a lovely Christmas with family and friends, and also with the knowledge that I wasn't recovering from surgery and meeting radiation and chemo appointments.  A couple of days ago I had my 14th Immune Trial injection (1 to go).  Dr seems very happy with my results.  I now have to try and stay positive and not think about what may happen when the injections finish.  The past couple of weeks I have been feeling sore and coughing a bit, but when I mentioned to the Dr that it seems to happen more in the heat (the temps have been in the 30's and humidity high) he agrees that it may be the cause.  Gosh it is hard trying to take note of things.  Today I woke early thinking it is due to a big day planned and now I am remembering that the second day after injection last time I had a unsettled sleep.  I met a man in the waiting room and he is going through the same as me.  It was so nice to speak to someone who appeared to be positive and also beating this nasty cancer.  I keep in touch with a few group via Face Book and it gets so depressing sometimes reading that another warrior has lost their battle.  I have to keep this going, so people know that It Can Be Beaten.

Friday 19th Dec 2014:  Feeling exhausted, but very very happy.  I have just done some lawn mowing around our home.   Also last night I held a little Christmas dinner party for some friends. Both things that I haven't been able or feel able to do in quite some time.  I keep thinking back to this time last year and also the year before.  Both coming out of surgery and commencing radiation and chemo.  This year my scan is showing ALL CLEAR!!  whether that is due to the new trial injection or the surgery, radiation, chemo I suppose we will never know.  The thoughts that are going through my head now are positive and full of hope.  My body still reminds me that I now have limitations, but lots of people have that as we age.  Our cruise went well and I even did a bit of snorkelling :).  Plus came home with antibiotics & heavy painkillers not needed to be taken.  This is one Christmas that I am very happy and thankful.
Enjoying cruise at Mare Island

Wednesday 12th Nov 2014:  Packing for a 12 day cruise and I am a little concerned as getting short breathed quite often.  Trying to not over think and become negative.  Side/Back is achy, and trying to tell myself that it is due to doing more activities and not due to anything else....  Booked health insurance the other day.  filled in lots of questions regarding existing conditions.  I only take pain killers when needed.  My husband takes a heap of medication for diabetes, high blood pressure, cholesterol etc etc and he is fully covered and I am not covered at all.  Not happy.  Brings it all screaming back even when feeling 100%.  Thinking positive and have packed painkillers and antibiotics as a precaution. When I return it will be a full on Meso week with a Ecumenical service, Trial injection, PET scan.  Until then I shall try and live each day to the fullest :)

Wednesday 29th Oct 2014:  
All I can think about is this time last year and the year before that, I was undergoing major surgery and battling to come to terms with having Mesothelioma.  This year I am packing my bags not for surgery but to go on a cruise and enjoy the warmth of the Pacific Islands.  I am still Very aware that I am not over this and I have reminders with every breath, but I am trying to put that aside and enjoy life to the fullest.  One of my hardest things is delegating chores and other minor things that I use to do with ease to others as I now find it either tires me out easy or I end up in pain.  Another new symptom is that I am gaining weight! This I know has a lot to do with coffee & cake and lack of exercise.  At the moment that is the way I am dealing with my life and keeping well and happy, which I think is more important than a couple of kilos.  The immune injection Dr has decided to extend the intervals for the remaining injections.  I am not sure if it is science or Xmas holiday that has influenced the decision, but I am hoping in my case it doesn't matter.

Wednesday 01st Oct 2014: Appointment for my first remaining immune injection.  Felt like a bit of a reality hit as what I remember the Dr saying is that they will continue with the remaining injections to help keep the immune system up for as long as possible to keep the cancer away.  Does he think it will come back :(.  Or is my mind over thinking due to battling a cold and feeling a bit weak and flat at the moment.  Decision made to have them at 3 weekly intervals starting from today.  I forgot how #### sore the injection is and nearly kneed the nurse in the head with a reaction from my other leg when needle inserted.  Then we laughed as she held my leg down while continuing.

Tuesday 16th Sept 2014:  The wait is over - Good news.  It's like I knew it, but don't believe it.
Big smiles for the rest of the day.  Decision made that I will continue with the remaining 5 immune injections and use them up.
Big smiles when news received of a clear scan
Sunday 14th Sept 2014:  The waiting time once again.  You would think that after a while you would get use to it - but you don't!  Maybe people around you and care for you may get use to the routine and waiting, but I certainly don't.  Trying to keep busy and have positive thoughts, but then I get sore or short breathed and then my mind starts thinking...  Tuesday I find out results of PET/CT scan done on Friday.  I am so fortunate to have such caring family and friends who keep a constant eye on me and keep me grounded.  For anyone who has recently become ill, try and keep a record as when you go for tests/treatment you will need to complete pages of questions that you have already advised, but constantly asked...  and me well I'm anxious enough on the day, I don't want to keep a mental record of when I got what done. Would rather live by the "been there done that - now getting on with a bright future".  So when asked name and date of all surgery etc....... #!#!  I can remember the pain, and the nice brown eyes of the surgeon, not how to spell the bloody procedure name.  Please just fix me so I live a long and healthy life.

Wednesday 6th Aug 2014: Today I completed my 10th injection in the immune trial.  Decision made to not continue with any more of my remaining 5 vaccines until after my next PET/CT scan due in Sept.  Back to the waiting game.  I won't know what to do with my self if my health stays OK and I don't have any doctors/hospital appointments until then.  I'm still blowing blood, but hoping it is hay fever.  The cramp spasms, not sure, could still be from the surgery healing.  More monitoring......  Even though things are appearing very positive at the moment, I am still very anxious and question my future.  Constantly looking up articles, blogs etc on the internet and there is so much negatively about life span.  I'm going to show people that with early detection I live long and eventually finish my patchwork quilt.

Tuesday 17th June 2014:  The feelings that go through your mind while waiting for results must be the same for everyone I reckon.  You try and be as normal and positive as you can, but your mind it going over all sorts of weird thoughts.  Well today was MY positive day. The scan came back with "no hot spots".  Still scaring, possible tumor, but NO current cancer.  Best birthday present ever......

Friday 13th June 2014 and I am just about to head to Mater for a PET/CT scan.  Don't mind sharing that I am s**t scared, as this is the test that really shows how it is!  It is not the scans that I worry about, it is the anxiety that kicks in and with every little pain or twinge I start questioning whether it is a good or a bad sign. I know that on Tues when I see my Dr with the results I will know more, but I hate all this waiting.  It is like your life is on hold, but you don't want it to be, as you may not have that extended life.  All the thoughts keep creeping into my head that I read on the net about being " incurable, terminal, 9 months etc etc".  Then I say to my self "hey self! - you did a bit of mowing last weekend - first time in 2 yrs, think positive!"

Yesterday I found out through the internet that there is a lady who is living with Meso for 10yrs and defied the odds.  Then when I read into her story more, I have found out that she lives in the next suburb to me and her birthday is the day before mine.  Go figure....

The Beginning:-

It has taken me some time to start this blog, and for several reasons.

  • Should I keep my private life private?
  • Would expressing my feelings be in vain?
  • I am not an academic, so my grammar and spelling is not the best
  • Am I going to be well enough to continue this?
  • I want a happy outcome :)

1 comment:

  1. Suzanne, I am happy that you chose to share your journey and inner most feelings in this blog. Sometimes I think it is easier to write it all down. I know that I am learning more about how this awful thing is impacting on you by reading your journal. Thank you.