1998
Pain in my back, Put this down to computer use. After 3 months it settled down. I did have an Xray but my GP thought it was wear and tear.
Had terrible chest pain in Spain, thought it was Food poisoning.
1999
Terrible chest pains towards the end of the year.
One attack of lung feeling stuck to ribs.
2000
Miscarriage in January - was it caused by Meso?
Pleurisy early part of year then in October really bad. I was unable to breath and again thought my rib was stuck to my lung, I collapsed at work and taken to hospital. Doctors put it down to Viral pleurisy. Checked for a blood clot due to hysterectomy in the April.
2001
Energy levels were lower and I hated having to go up and down the stairs when we were renovating the house. I was breathless.
2002
April - Terrible time with lung feeling like stuck to my ribs. Iron bar constantly felt like being pushed into my back. After 2 weeks I went to hospital where they did oxygen tests and found nothing. Two weeks later admitted again to hospital and had a CT Scan of my back bone. Obviously nothing was found, but when I went for an Ultra Scan the woman sent me for a Chest Xray. Nothing was done and I was discharged from hospital as a time waster.
These events happened again, July, October and December - Temperature would be around 35 - 35.5, told this was impossible.
2003
Asked to see a gyni as the pain was similar to endometrisis, ie when your overy sticks to your bladder, and after looking into this there were cases of endo on the lung.
June: CT Scan results not given until September where the Doc said there was something odd! Had ultra scan - nothing.
October: Ultra Scan requested - chest full of fluid.
November: Introduced to a Chest Physician at Middlesbrough. They also thought it could be Endo.
Walk in clinic offered to find cause. I also started monitoring my temperature instead of just when it happened, onset of session usually brought my temp down between 34.5 and 35.5, my normal is 36.5.
2004
December 2003 , January, February, March, April, May, June
lung kept filling up but stopped emptying of fluid
July
On my birthday told I was to see a Surgeon, On the 29th met surgeon Andrew Owens
August
First Operation. Tumour Removed and chest wall cleared of all that could be seen.
26th August told the news I had mesothelioma, and life expectancy less than 1 year. My lung had filled with more fluid and blood so had 2nd Operation to remove fluid and do pleurodesis.
November
3 lots of radiotherapy to drain sites
December to May 2005
Alimta chemotherapy with carboplatin.
2006
Enjoyed Life till December.
Heart attack pains started back.
2007
February
Gall bladder removed incase this was causing pain, and to prove a point.
June
Kidney really painful
August
Xray showed cancer growth upto 2 cm
September to January 2008
Alimta and carboplatin, then just Alimta
May 2008
Pains starting again
August
Cryo -ablation to kidney\aorta. Removed all pain from my Kidney but I knew I had to find something else to keep alive.
November
Cryo -ablation to chestwall (left breast) - advised to have surgery by Dr Abtin to save my life.
December
Met John Edwards to discuss surgery
2009
January
Removal of left lung lining, diaphragm and heart sac at Sheffield Hospital by John Edwards. 11 days in hospital and came home with chest drain.
February
Speech at Mick Knighton Meso Action Day - suffered heart failure
August
Still in pain - more importantly still alive
2010
January
One year on and Still in remission, reducing MST
May
My first holiday - possible cause of air leak? Cancer holding stable although not disease free.
2011
January
Scan shows reoccurence of the disease and several nodules.
March
Cryo-ablation of 4 tumours at UCLA. Sizes 1.4cm, 1.3cm and 2 at 1.2cm. Also told that I have 15 pin heads on left lung (is this defined thickening?) and 3 nodules on right lung - could be mesothelioma but hard to say.
Still deciding next step of treatment - will have an idea after scan end of June.
August
Noticed a lump on my chest- thought it was an inflamed lymph node.
September
4 sessions of radiotherapy to the growth - the meso is growing out over with possible tracking from a needle mark.
October
Lump hasn't shrunk and still causing discomfort.
2012
Ignoring the fact the mesothelioma is growing, I want a year off treatment.
September
Scan not good, fluid back around the heart and mesothelioma on the heart sac (pericardium). New growth more aggressive than last years.
November 1st
First Dose of Cycle 3 - Alimta and Carboplatin at 50% ratio to weight or bmi?
November 22nd
Reaction as receiving chemo, didn't know this could happen and cost you your life. Made me grateful I didn't have it at home, as a 999 may have been too late.
December
One radiotherapy session to my 3rd boob.
2013
Feb
After my first Scan in January since the chemotherapy and radiotherapy my oncologist has told me I have shrinkage everywhere. I am so thrilled, never before have I felt this relief.
June
The mesothelioma out of remission, right lung activity increased as well. It seems my chemo of 50% worked but only for the 4 months. No other treatments available at the moment apart from Trials and they are hard to get on unless Phase I, which I don't want to do. Will wait till September in the hope something may be offered.
I don't want to have to fight oncologist for treatments as I don't have the energy to fight him and meso together.
July
Have ascites, which is fluid in the abdomen. I have to hope the meso hasn't spread here. It could be the fluid now in the right lung dripping down or caused by the meso in the diaphragm annoying the stomach. It isn't pleasant and have had 3 attempts in two days to remove it. Only drew a small amount out.
August
Had another go at removing the fluid in abdomen. 3.85 litres removed.
Unfortunately, I think due to flying, my abdomen swelled back up. Awaiting treatment.
September
Drained again 5.2 litres drained, advised to have permanent drain fitted but declined as I thought it was due to flying.
Read I have multiple tumours in my stomach and pelvic area. I haven't had the report told to me by an oncologist, just from the written report.
A Permanent Drain fitted into the stomach.
November
Started Chemotherapy - Regime Vinorelbine at 60mg day 1 and day 8. Low Dose to test tolerance.
This is my journey through treatments for Mesothelioma and daily life. I hope you can share the frustration, laughter and tears with me through this battle of living with mesothelioma. Janet Egerton
