On May 18th 2011 I was diagnosed with endometrial malaria-like bladder encarcinoma. It is rare and it was very difficult to diagnose due to my symptoms. I was very fortunate to have a new GP who actually listened to me and took tests to work out why I was so unwell. After numerous types of tests, a gynaecological examination and two ultrasounds I was referred to see an Urologist. The Urologist aft
er seeing me had to have a roundtable discussion with other specialists in the Westmead Specialists Group. I was then referred to a Gynaecologist. I was treated by both Specialists at Westmead Private Hospital and Westmead Public Hospital. After having a cystoscopy I was then referred to have Radiotherapy on my abdominal area. After radiotherapy I had routine cystoscopies every six months. In June 2012, after my final cystoscopy and biopsy, I was told that everything was fine and I was all clear. I just had to continue taking oral HRT to manage the cancer. Within three months, I was already feeling unwell, bleeding and having more strange symptoms. I went to see my oncologist who sent me for a CT Scan, which showed I had more nodules, plus a bilateral hernia where the right one was bigger than the left. I was then referred to a Cholorectal Surgeon. So I was now seeing three specialists plus my GP. After vigorous testing and PET Scans I was told my endometrial bladder cancer had returned and I had now secondary bowel cancer too! I was shocked! I now had to have major surgery involving two teams – Urologists and Cholorectal Surgeons – my bladder would be reconstructed removing the affected area, my bowel would be reconstructed – my sigmoid colon would be repaired, I would also have a temporary Ileostomy bag – while my bowel healed, a bilateral hernia repair. I was worried and scared! I was booked in for 1st March 2013. On the day, they found more cancer, so my 6-8 hour operation took 10 hours. My family were devastated ! I came out of it alive and a wreck! I couldn’t move! I was lucky to be alive! After two weeks I was able to go home! I had help with housework, as I was able to look after myself. After more testing, they found the cancer was back with a vengeance! More shocks! I had to have 6 sessions of chemotherapy! I commenced Chemotherapy on 23rd May 2013, I had 3 sessions and my weight was dropping rapidly, I had already lost 20 kilos since January 2013. I was so weak, and then my liver started to malfunction, I was told no more chemo, although I had already decided I couldn’t go on like this any longer. I couldn’t even stand up. I was 45 and living at my mother’s place, using a walking stick to get around, and had to have bedbaths as I kept fainting if I stood up for more than a few minutes. I was hospitalised and told there was nothing they could do but to try this oral chemo. It was my last chance. I was scared and didn’t want to take it, but eventually decided to go ahead with it. I was then allowed to go home – back to Mum’s. My main focus was to get better so I could go back to my home and regain my independence. When I went back to see my oncologist – he told me I shouldn’t go back to work. I should make the most of the good times.....I was so scared. After crying for two weeks, having family discussions, updating my will and Power of Attorney, I decided to have my ileostomy bag removed. My surgeon was against it, I said I want to be normal, if I’m on my way out. He finally relented. October 2013, I went to have my op...and I was so dehydrated I had to stay in hospital for five days on fluids to prepare my body for the operation. Then they did the surgery and my body recovered amazingly! After a few months life got easier, my bowels were working normally, I was having normal sensations, and knew the signs – I had to relearn. During this time I was still on the oral chemo drug. I had started to recover, the rest of the nodules had disappeared and there was only one left on my liver – the last one that had appeared during Chemo. This nodule had shrunk from 44mm to 11mm! In October 2013, I was terminal. Today, two years later I am still here and very grateful. Thanks to my wonderful family, friends , colleagues, Doctors, Professors, nurses and strangers who were so generous to help me when fundraising was being conducted on my behalf.
