In 2001 every day I would experience extreme fatigue, swelling of peritoneal area plus a few other things and had numerous tests that showed up nothing much, so I just lived with this diagnosis of unconfirmed 'you know your own body' feelings. Occassional pain - nothing that a heatpack/light pain meds would not ease, however this was an every day happening.
I could also go back quite a few years prior to this too where I experienced lots of medical symptoms noticeably fatigue/headaches ..... . However in 2001 I knew as did my doctors that something was not quite right. Below are extracts taken from Keith's 2003 diary.
In October 2003 Sunday 26th extreme fatigue/exhaustion and the worst pain imaginable peritoneal/groin area that lasted afternoon and overnight then went.
Tuesday 11 November
Ultra sound test for 'lump' on groin area
Tuesday 13 November
Results from my doctor 'lump still there (from a ultrasound of 18 mths ago), seems okay, nothing to worry about'. I asked for a referral to a specialist.
Monday 8 December
Fine needle biopsy performed on the lump.
Thursday 11 December
I received a phone call from my specialist at 8pm 'further tests needed, tumour biopsy possibly malignant'.
Friday 12 December
Monday 15 December
Keith and myself saw the specialist
'Bad news, tumour malignant, will operate and remove tumour and try to discover where 'cancer' originating'.
Weds 17 December and 18 December.
Admitted private hospital Essendon, Melbourne
Surgery, gynacologist did a laproscopy, then surgeon removed tumour(s). Just over 3 hours and back to ward. Apparently surgeon was looking for ovarian cancer. He said 'not ovarian, still don't know the origin of the primary cancer. Will know more after tomorrow's biopsy results.
Next morning my specialist said to me 'walnut size plus tumour and tumours spread around - very hard to excise and serious. Discharged to home, and come back to see him on Saturday for biopsy results.
Saturday 20 December (THE BAD DAY)
Saw specialist 10am. He said 'Biopsy says most probably mesothelioma'. This specialist looked at us while trying to pronouce mesothelioma, said 'I am so sorry it is very aggressive', I looked at him and pronounced the word mesothelioma for him and said my dad died of this cancer in 1985 aged 54 years. Both Keith and myself were numb/dumbfounded of all the cancers I did not ever expect to get mesothelioma/asbestos cancer as I DID NOT WORK WITH IT like dad had done in the building industry!
This specialist referred us to my current oncologist ' Allan Zimet' and arranged an urgent appointment for Monday with him.
After going home and just feeling totally numb, in shock and hugging each other on the bed not wanting to take in this news, not answering the phone because not wanting to tell family/friends my bad news, the spell was broken when my girlfriend Sue knocked on the bedroom window loudly and said 'Lou open the door, I have your favourite muffins with me' It was her way of saying 'I am here to support you in every way'. While Sue made our cuppa and muffins, Keith returned family/friends phone calls/messages until I was stronger to ring myself later that evening.
Sunday 21 December
(all of this is taken from Keith's 2003 diary) he has written in the diary 'I feel so useless, all that I can do is to make Lou comfortable around the house'. Lou still in a lot of pain but still insisted on visiting the shops to buy Christmas presents for everyone.
Monday 22 December
CT scan and chest xray at John Fawkner hospital 11.30am then home to rest.
6pm saw oncologist 'It is mesothelioma. NOT in lungs, ovaries, major organs, BUT in lining of cavity around stomach/abdominal areas. VERY SERIOUS will start chemotherapy late January.'
Sunday 28 December
Still experiencing fatigue/bad tummy and back pains.
New year's eve
Celebrated with good friends Lyn/John and Maree - a beautiful meal, good company at their lovely home. We left 11.00pm as I was unwell. Watched fireworks on TV and celebrated with a glass of champagne, kiss and hug. Keith has written in his diary 'Please make Louisa have a happy new year'!
We will go out for lunch to celebrate my/our 10 years since treatment day!
Thank you to my medical team, in particular my wonderful oncologist Allan Zimet for believing in me and giving me hope to live with this cancer. Thank you to our family, friends and everyone else who has played a part in the big scheme of things. I love you all and without U I would not be here today and being WELL!
My heart goes out to those doing it tough atm - you know who you are!
I live with this cancer, live in the moment and let the universe take care of the big picture.
I believe I am still here to give hope and support to others, raise awareness, education and advocacy - this is what keeps me alive plus having the wonderful support network!
Merry Christmas to all.