Tell us a little about yourself
My name is Gwendolyn Ewing and my husband is Eric Ewing.
We are both retired and live in Toowoomba, Queensland. We have 2 sons, 1 daughter-in-law, 1 grandson and 4 granddaughters.
When and how did you first find out you had melanoma?
Eric had pain in his back (above the waist) and we thought he had developed another kidney stone. We asked a locum GP for a referral to his Urologist, Dr Yap. Eric had an x-ray taken and when we went to see the Urologist, he said there was no sign of a kidney stone and that he should go back to our GP. Dr Cormac Carey had returned to work and following an ultrasound, he told us that there was a mass on Eric’s adrenal gland and that he wanted Eric to have a chest x-ray and a brain scan. As soon as I heard this I just knew that it was cancer. It took about 2 days once further tests were completed, and our GP confirmed that it was very bad news and it was indeed cancer. For such an emergency, and as most of the Oncologists were away at that time at a conference in China (I think), Eric was referred to Dr Adam Stirling, from Icon in Brisbane. Eric was in hospital at Wesley in Brisbane the following Tuesday, underwent a PET scan that afternoon, and the diagnosis was given to him the next day:- 6 months to live with no treatment, but with new treatment being researched, it could extend his life to 1-2 years. At that time it was unknown if the treatment would be as successful as it has proved to be.
Tell us about your treatment
The next day, he underwent numerous x-rays, scans etc and was recommended to start with brain radiation for 3 tumours – 10 doses in total.
He underwent the radiation as an outpatient of Wesley Hospital in Brisbane. It was devastating as we had not long retired, barely 2 years, and had plans of becoming grey nomads. Instead of the 3-4 days at the Wesley Hospital (Brisbane), it was over 3 weeks before we even looked like getting home. Our sons were wonderful, driving us down to the Wesley (and home eventually), visiting us when their work commitments allowed, and our daughter-in-law provided us with a range of meals and bikkies. All this was a great help and I don’t know how we would have managed without their help. Even to this day we will be provided with a Meat Loaf, Curry, or such. They are wonderful to us. The brain scan was very challenging for Eric as a face mask had to be made and he was “fastened” to the bed whilst the radiation was being delivered to the tumours. Dr Adam Stirling, Eric’s oncologist at that time, referred us to a social worker, plus other numerous services whilst he was in Wesley. Eric was discharged as an inpatient after 4-5 days, and underwent the brain radiation as an outpatient. Eric had a melanoma removed from his (R) upper arm in 1992 and the excision lines were all clear. I still have a copy of this report. We returned to Toowoomba at the end of May 2016 where Eric commenced Nivolumab (Opdivo) fortnightly at St Andrew’s Hospital. Eric is now under the care of Dr Natacha Sorour. Dr Stirling ceased consulting in Toowoomba in 2017. A proposal for Opdivo to be dispensed 4-weekly is currently waiting approval to be included on the PBS. This will make it much more easier for us rather than having to attend St Andrews fortnightly.
What challenges did you and your family and/or friends face after your diagnosis?
The challenge meant our lives were changed forever. Our caravan travel plans were no longer possible, and we sold the van to concentrate on Eric’s future and treatment. He has had some health issues which required hospitalisation, such as a kidney stone which was removed, and a gall bladder infection. He had his gall bladder removed in June 2018, and pathology showed a melanoma in his gall bladder. This never showed up in any scans, ultrasounds, or PET scans. Eric commenced immunotherapy (Opdivo) at the end of May 2016 and to this day, we are still going to St Andrews Hospital in Toowoomba for his fortnightly treatment. Eric was very ill for some considerable time til his body adjusted to the treatment. He had lost a huge amount of weight, had no appetite, and could not eat certain foods due to the smell or taste. This all started during the administration of the brain radiation. To date this still is affecting him, and there are food types he cannot tolerate. One is lamb, which I love, but no longer cook. Our family has been a wonderful support to us, as has that of our friends. Our boys are always helping with numerous chores around our home and nothing is too much for them. One of the major challenges I had, was that I am now the main car driver. I had never driven much on the highway, so had to learn how to do that and drive distances of 3-4 hours when necessary. Oh how I would love to become a passenger again! I find now that as time progresses, Eric cannot do much due to weakness and I am called upon for most things in our life. It is very hard for him too, to acknowledge that he has to delegate the tasks he once used to do. Having a partner in reasonably good health as one ages, is something that should never be taken for granted. We cannot plan too much ahead these days, as we never know what the next day will bring. We did manage to accomplish a train trip to Longreach on the Spirit of the Outback in April this year, after we had to cancel it the previous year due to Eric’s health issues concerning his gall bladder on doctor’s orders. Of course, we no longer qualify for travel insurance, as no insurance company will cover cancer. I also cannot be covered either, as they deem that if Eric cannot go, then neither will I.
Tell us about your involvement with MPA
I think it was during treatment at St Andrews that we were advised of the MPA and that a monthly meeting was held locally for patients and their carers. We have been along to 2 meetings, but Eric is a very private person, and felt uncomfortable talking about his issues to a group of people unknown to him. We have not been to another meeting, but I keep in touch through the MPA closed facebook page. I pass on to Eric anything I think he may like to learn or hear.
How has melanoma cancer affected your outlook on life?
It has been very traumatic to say the least, but I try and take one day at a time. The only disappointment would have been our dream of seeing our own country via caravan dashed, and of course, the fact that Eric is now facing his own mortality. It is very difficult to stay positive, and some days can be very emotional for me. I am in my 70s too, and was never expecting to have to take on the role of my husband’s health issues, let alone take over most of his daily responsibilities too, and have more added in caring for him. Unfortunately the ravages of the brain radiation are now becoming evident and the early stages of dementia are appearing. Here again, there is nothing that can be done to prevent this. In our marriage vows taken over 51 years ago, it was for better or worse, and that is what we are now doing
Do you have a motto or personal mantra?
Never never take anything in life for granted. You never know what tomorrow will bring. This is so true as one ages.
I’m happiest when…
We get home again after the treatment and all is ok. ….We have managed to steal some time to go and see a movie. …We have been over to one our son’s home for a family roast and catch up with the grandkids. ….When we meet up with old and dear friends for lunch every week. The conversations are so diverse and really give the grey matter a workout. This exercise involves much laughing. It puts things into perspective, and one can forget real life, for just a little while.