My story is written to help others going forward, a positive perspective for their own journey.
We will all be different within our own stories, as we all have different issues that we deal with and we all have different organs removed or have different outstanding medical issues besides this cancer, before or after surgery.
When I first started this part of my life, it was in September of 2009 and was caught by fluke as I had gone into emergency at one in the morning for another reason – totally unrelated and minor.
In the bloods the hospital took, they found a high inflammation marker, and did an ultrasound at seven am that morning. After two days in hospital; they finally removed the appendix via key-hole surgery. They had to squeeze me in-between other surgeries. Results came through a few days later, they had found a teeny tiny spot of cancer – Ok where do we go from here?
In November that year, the day before our sons school formal night, I was booked in for a right hemicolectomy to see if there were any more cancer spores. They found one pin-head size in the fatty tissue around the bowel. I was then put on chemo for six months – they were hoping they had caught it all in time as it was all small – at that point.
Name of cancer – Pseudomyxoma Peritonei (PMP) – A rarer cancer – it would have to be wouldn’t it. In Australia, it falls under the Neuroendocrine Cancers (“Unicorn” rare cancers)
Being diagnosed and trying to research what information I could find – there was not much around then. Australia didn’t have the longevity research here that some other places in the world had, and the world information was so confusing and different with drugs used, insurances and procedures used. Back then, I managed to find an easy to read web site through the Basingstoke hospital in the UK. I also discovered that the surgeon that was doing my operation did time as an understudy there. So my research was done.
Still it was not the best end to that year as sadly our younger sister was also in the final stages of her life – for totally different reasons with breast cancer.
I flew back home to New Zealand (Dec 2011) to see her on the afternoon that I had seen my specialist, who confirmed what they were going to try and do for me. A Peritonectomy with HIPEC operation. I had printed out the information from the UK website and took it with me to my specialist to ask him if this was what was going to happen – YEP – FRIG – WOW.
I re-read all the information on the flight back home to NZ. I had not quite absorbed what the whole process was going to be with me at that point. I just needed to see my sister.
Diagnosed with this challenge, PMP, I didn’t know if I would make it passed the ‘maybe five years’ that I was given if I had the surgery and ‘two years’ if I didn’t have it.
Well I wasn’t ready to leave this world yet, I had way too many arses to kick LOL, and we were just moving into our newly built home. What a year – but, I was still able to put two feet on the floor each sun rise, so life was for living.
I returned to Brisbane on New Years Day, and by the time I got all of the required tests done over January and February in 2012, the cancer was now classed as aggressive, spreading rapidly, so I was operated on the 18th of April 2012.
Eleven hours later I was wheeled into intensive care and hopefully, a bit lighter after having had many internal bits either removed, lasered, cauterized or snipped.
I did ask but sadly, the request for a tummy tuck & boob lift at the same time did not happen – I was hoping to get some benefit from it all.
After a free, three week holiday stay in the P.A. Hospital hotel, with food delivered via tubes, beds made, floors toilets and showers cleaned, as well as my washing done, I finally headed home to my lovely family and oh my own comfy bed.
Life after, for a while is up and down.
When you feel great you can overdo it, then you suffer the next day.
But you have to push yourself each and every day to get better and move those muscles.
Walking is always the best thing to do as it is gentle on the body and gets you moving.
Swimming and Pilates are great too, as long as you take it easy at first. You tend to work muscles then really, really feel it the next day.
Walking is also the one thing that helps you speed up your recovery while in hospital and get you back home again. Walk Walk Walk Walk Walk.
It takes time for the body to heal from the procedure and then, time for you to feel like yourself again.
For me; a few months later, I was back teaching three days a week at the Gold Coast institute of TAFE and running my business here.
BUT about every three weeks, I would crash out and sleep whenever I could get thirty minutes, and those sleep weeks would happen to me for about 4 years or so.
Even now, twelve years later, about every six weeks or so, I get so so so tired, I crash out.
So what do I do, I listen to my body and sleep when it needs.
I never wanted to do a bucket list. I just wanted to enjoy what we have here, waking up each morning with family and enjoying friends, all who are supportive and caring. Travel & have holidays when we want to.
Enjoy whatever part of the world you are in, for whatever you can get from it at this time in life.
Best thoughts for your own journey, and support for your helpful family and careers.
Gwenda
