Support for Cancer Sufferers and their Families

unI want to say a huge thanks to everyone for their wonderful ongoing support. It has meant the world to me. The cards, text messages, messages on social media from Twitter and Facebook to LinkedIn, phone calls, offers of driving me to and from treatment, somewhere to stay and recover (had an awesome three days with dear friends in Mangawhai over New Year’s when I had 3 days off treatment) have been amazing.

One of the things that took a bit of getting my head around was my family and how my cancer affects them. We have lost some of our closest family members and friends to cancer and I didn’t always appreciate how everyone else in my family was feeling. It’s something I noticed at the hospital that it was often the partners that were really struggling. We patients are more focused on how we are feeling and how to cope with side effects, keeping up at work and on my part feeling guilty for falling asleep at 7PM or earlier every night and going to bed early, leaving my wife on her own, evening after evening for months. I’m still doing that and could be for a little while yet.

After I left the radiation clinic for the last time, with instructions from the nurse, not to come back, which I was happy to agree to, I went to the cafe for my last coffee and cheese scone, staple diet to keep me moving.

Then off to the car to head to work for business as usual. I was feeling disoriented.

For 2 months my life had been focused on getting up around 5:30AM every morning and heading across the bridge for treatment and now it was over. The card from the staff may have been a factor, because it was like leaving your job, something that had become routinely normal. I wandered around a little bit as I headed to the car. I sat there for a little while, looking at the card, looking at the smiley face stamps on my appointment. Thinking about the PSA test in 3 weeks time and wondering what the oncologist would have to say to me when we catch up in a month, especially given that my PSA tests had never shown me to have abnormal levels, despite the tumors. Will I be clear or will I need more biopsies. I don’t like the idea of more biopsies because each one increases the risk, even slightly, that cancer material if there is any left, could then be passed into my bloodstream.

Anyway, got to work and got busy, then when I got home, I found a wonderful message on the front door from 7 year old Madison, which cheered me up immensely.

Mads (and all my family) has been tremendous, she is very empathetic but also great and grounding me.

Then it was off for a family dinner at Genghys Mongolian Restaurant with my family. I took it easy on the food, but the taste sensation  was amazing, even though I stayed away from the garlic and spices as instructed.

The piece de resistance was a cake, totally unexpected given that it wasn’t my birthday, which neighboring diners probably assumed. This brought tears to my eyes after a long two months and long day.

So now we wait and life gets a little back to normal. I still woke up at 5 this morning, but i was able to doze off again. They say its all about attitude and I have always felt that I am a survivor. I have also also felt that I have a guardian angel, my Oma, who had a 20 year battle with cancer (after she was told she would probably not live past the first year).

You don’t get through these things on your own. I’m a bit of a loner when it comes to dealing with stressful situations. Cancer has certainly changed that. I now gratefully accept the good wishes, the offers of support, the prayers and constant goodwill from colleagues, friends, family, acquaintances and total strangers. I’m also extremely aware that I am lucky, there are so many people worse off than me that have amazing strength and great attitudes.

I am focusing a little more on what matters. Family, lifestyle, maybe a little self indulgence to come, because you can’t enjoy the fruits of your labors when you are gone.

My immediate focus beyond my next oncologist appointment is the Auckand Relay For Life. As you may know, my daughters have set up a team called Early Birds, which recognizes that if I hadn’t had those PSA tests, we wouldn’t have known I had cancer. My prognosis would be very different.

I don’t know if I will be able to do the marathon distance I did last time, but I will do what I can and have a great team behind me. Our team isn’t just about me, although it is what I asked for when my daughters asked what they could do to help me. It’s about all the people that we and our friends have lost to cancer and those who like me are battling it still. It is to fund raise for the NZ Cancer Society that only survives through donations, sponsors and events like this.

If you would like to help and support us, you can:

1. Join the team. There are no limits and it really is an awesome 24 hour event.
2. You can make a tax deductible donation. If all my friends donated only $5 (the minimum amount that allows you to claim back against income tax) we would be giving the society a real boost in supporting cancer research as well as facilities like Daffodil House, where some of the patients I met in the clinic were staying for free, and the many other free services they provide like booklets, a library, free counseling and much more, without Government support.
3. Come along for a visit. Especially the survivors laps at the beginning and end of the event. I can promise you a very moving experience with hardly a dry eye in sight.

Thanks again to all of you for your amazing support. I can’t tell you what it means, even just to have a ‘like’ or comment on my blogs and my social media.

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GPS Tracking and Navigation for Elderly People

The other day I read about a new invention, which is a GPS enabled walker for elderly patients. Apparently this is a student research product and being tested in Nursing Centres. It uses Wi-Fi communication and helps guide people around a complex such as a hospital or retirement centre. My first reaction was that this was a joke, but the more I think about this navigation for zimmer frames, the more it makes me think about solutions we will see soon.

Firstly, people do get lost in hospitals and large complexes, and the people most likely to lose their way will be elderly patients, perhaps with dementia or simply struggling with stress, pain or under influence of medication that makes them a little dopey and disoriented. If they are in a wheelchair or using some other aid, a mapping or navigation device could well be useful. Hospitals will in future have WiFi networks for their and this could be a device that is supported by it.

I often hear stories about elderly people with dementia getting lost when they go for walks and understand this is quite common. If they remember that they do live in a village or rest home and have a navigation device, it could guide them safely back home.

The other side is far more likely in the near future and that is tracking of people. I had a discussion today with someone from a New Zealand hospital about tracking of staff who visit mental health patients in their homes and the value of being able to locate them if they haven’t checked in within a pre-aranged time. Small pocket GPS tracking devices with GPRS connectivity already exist commercially and some of them also have ‘panic buttons’ that send an urgent alert together with the current GPS co-ordinates. These are typically still quite expensive, i.e. over $500 but with volume the prices will come down.

St Johns and other organisations have solutions such as LifeLink which is a great solution for in and around the home, but what happens when people go further from home. Wouldn’t it be great if there was a solution that would allow you to locate your elderly or ill relative if they don’t return from shopping or a quiet walk. What if they just want to walk a few houses down the road to visit a friend? I would have gladly paid a rental for a service like that for my late grandmother who had a fall one evening and wasn’t found until the following day with a broken hip.

Although it’s not aimed at  elderly people, you will soon find walking directions on portable navigation devices (PND’s). You will be able to download a map that tells you where to park your car and then how to find your way around shopping malls, hospitals and unversity campuses, through parks and arcades. Maps of this nature will be commerically available within the next 12 months. They will also be available on map web sites in the very near future.

Most countries will also very soon have sophisticated navigation software and maps available to run on mobile phones, which will be as impressive as the portable Navigation Devices that are so popular today. Many phones have GPS built in and Bluetooth GPS Receivers abound for much less than $50.

It’s not a big stretch to see software being added that allow your location to be sent to other people on demand (with your permission of course). This isn’t Sci-Fi I’m talking about, it’s 2008 technology.

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)