Lila’s story: When cancer hit

We have invited YourLifeChoices members to share their stories in our new(ish) Sunday eNewsletter. Lila wrote about her recent challenges, saying: “I think my story is interesting, hope you do too.” We did. Lila tells her story:

The one and only love of my life since we were both 16-year-olds (I reckon I was the love of his life too for 41 years), was diagnosed with bladder cancer a few months after his Sydney Olympics torch run in Melbourne in 2000. Very gratefully, it was all good and hadn’t travelled to his lymph nodes. He got the ‘all-clear’ about 20 months later.

Most sadly, my beloved saw blood in his faeces a few months later in August 2002, after his weekly energetic doubles tennis game with mates. He was diagnosed with advanced, stage three, colorectal cancer in October.

He had three months of radiotherapy and chemotherapy to reduce the large tumour before an operation on 2 January to remove about 45 centimetres of his sigmoid colon and insert a loop ileostomy – although he insisted we still have our usual New Year’s party with family and friends.

After the operation – and four more in the following few years – we were very sadly informed by Pete’s chief oncologist, after my hubby insisted on knowing, that the diagnosis wasn’t good as the cancer had spread to his lymph nodes. We were told he had 12 to 18 months max to live.

My hubby continued to work as product manager at Brivis, in between continuing chemo, MRIs, CTs, PET scans and consultations with his GP and oncologist until April 2004. He insisted on using up all his accumulated annual and sick leave – he averaged one day’s sick leave annually for 14 and a half years – and long service leave until he had to have a couple more operations as the cancer had spread quite widely through his body.

In between all of the above, we both did lots of Googling to research anything that may help and did the Gawler Foundation 12-week course together and, after recuperating, started to fulfill his ‘bucket list’.

Most gratefully, the love of my life (no one could ever replace him and will not) and I shared many happy times almost fulfilling his bucket list. We did this both after and in between recovering from chemotherapy and another two very nasty operations, including re-opening his long abdominal wound when it became infected in September 2003 after post-op haemorrhaging to remove his ileostomy bag.

There was a very sad setback when none of my Pete’s four younger siblings were available/free to respond to their dad’s urgent phone calls for help when their mum fell out of bed and their dad was too frail to lift her up. We did. My gorgeous Pete insisted – against both his specialist’s and my advice not to do any heavy lifting. I thought I could do it myself but very sadly couldn’t. Anyway, Pete got his mum back in bed.

The best news is that my beloved, against all predictions and pain and suffering, stayed very positive. Neither of us, most gratefully, has ever suffered from clinical depression. I still don’t, although I miss him daily. We managed to almost fulfill Pete’s bucket list before his passing on 30 August 2009 – long after all predictions.

The second best news was when I rang Pete’s oncologist (he had given us his home phone number about 12 months earlier) and he told me very simply, “It’s time”. My beloved had not eaten anything but half a sandwich for two days, was totally incontinent and could no longer speak or move. The incredibly caring Professor Joe told me to ring a paramedic ambulance asap and “tell ‘em that I insisted on it”. He met me at the hospital after arranging a large room for Pete and our large families.

Pete actually passed away at home. The magnificent paramedics managed to revive him after about 30 minutes so we could hug and tell him how much we loved him. Our youngest son, who was visiting, rang all relevant family members and we followed the ambulance.

The nurses were ready for us and Prof. Joe was there to meet us on arrival, dressed in paint-dried old trakkie daks and a T-shirt as he was continuing his home renos that day. He apologised – unnecessarily. I can’t express how much he really cared.

He took both myself and our youngest son into an unoccupied room next door and held our hands, telling us how incredibly amazing Pete was to battle for so much longer than most. He added that he only included the extra six months (in his prediction of a 12 to 18 months survival) because he knew how very determined our beloved was to stay alive. He also told us it was ‘time’ and assured us that Pete would be kept alive and  pain-free until all immediate family members arrived; which he did.

So many people loved him – 300-plus signed his Life Celebration booklets on 30 August 2009.

Just a little aside, when my Pete finally stopped work in early 2004 and applied for a Disability Pension, it was approved as Prof. Joe crossed the ‘reason’ section with two large diagonal lines, wrote ‘Terminal cancer’ and signed it.

About six months later – after I had recovered from the shock – I applied for a carer’s pension as I had to stop working to drive Pete to various medical appointments. I was refused and told to ‘job seek’ weekly! I didn’t apply again as I was far too busy with my beloved Pete, my disabled widowed Mum, and doing a bit of babysitting for our then four grandkids (we now very happily have six).

Nurses visited Pete twice weekly in the last 12 months of his life. I usually did any shopping while they were there, but one nurse waited for me to return one day, wanting to check on my own mental health. She cursed when she learnt I had been refused a carer’s pension, and asked if I had a form she could sign. I found one, she completed it and I was finally accepted as a carer 11 months prior to my husband’s death – about six years after my beloved was approved for the disability pension!

Most happily, we managed to fulfill about 90 per cent of my beloved’s bucket list, although we depleted all our savings and, when both over 55,  my superannuation and much of my husband’s as he wanted to go back to Ireland, visit the UK, much of Europe, the US, visit cousins scattered all over Australia, and go on hot air balloon rides …. Can’t remember all we did, although I vividly remember our visit to theUSwhen Pete insisted on driving up theCaliforniacoast. Had to shout a few times when he insisted on driving and drove on wrong side of the road and I was in the ‘firing line’!

Still love him. It’s almost nine years since his passing – far too young at 61.

I’m now 71 and struggling to survive on the Age Pension with very minimal savings to upkeep our dear 50-year-old home on a sloping corner block. It needs work, old appliances need replacing, including 30-year-old ducted heating and cooling, and the car is 20 years old, though travelling well to date.

However, don’t think for a minute that I’m not happy. I have my family, a home (no mortgage) and super special sons and their families. I hope this long rant of mine may be of assistance to others.

Do you have a story to share with YourLifeChoices? Or any other observations? Know any amazing characters? Do you have a milestone birthday or anniversary coming up? We’d like to hear from you.

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Written by Janelle Ward

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