Techapilla’s back!

Been a while.

In the time it took to say 3 words, in regard to the Younger Techapillan – “it’s probably cancer” – the Techapillan world turned upside down.

A life filled with mundane worries, such as chauffering Young Techapillans to school and footy training, wondering what to cook for tea and how to keep Techapillan fans entertained, suddenly became filled with matters of life and death. What is osteosarcoma? Has it spread? Will the Younger Techapillan survive? Will he walk again?

So, life in turmoil, things changing from one hour to the next, and worried family and friends all keen to keep up with the news. Only sporadic access to computers in the first few weeks, so the Techapillan SMS-only phone bill scooted from $5/month to $126 in the first 2 weeks after diagnosis.

Months in hospital, isolated from family and friends, and technology and social media became a lifeline during the long year of treatment. Here’s how.

The Younger Techapillan’s main treating hospital offers wi-fi for patients, so web-based social media services were freely available there. Not so at the regional hospital, where the Younger Techapillan spent many weeks recovering from chemo after-effects. SMS/phone was the only means of outside communication there, so much frustration ensued from that.

Techapilla’s main communication method with family and friends was via an email list, but it soon became apparent that these emails weren’t reaching one very important group – the Younger Techapillan’s mates.

The Younger Techapillan’s main means of communication with his mates was via SMS and MSN, but he was often too sick to bother, which sometimes caused a lot of worry among the mates. After various failed strategies to keep the mates and family/friends more informed about what was happening, such as leveraging vacation emails and MSN’s “quick message” feature, Techapilla gave up and set up a blog to show the Younger Techapillan’s whereabouts at any point in time.

Techapilla, on the whole, did a pretty good job of keeping the blog up to date, although it was sometimes a day or two behind due to various medical emergencies. And Techapilla is pretty confident that it was the parents of the mates (as well as family and friends) rather than the mates themselves who made most use of the blog – the mates mostly preferred to rely on SMS and MSN.

While Techapilla choose to use a WordPress blog for convenience, there are sites such as Caring Bridge and Care Pages which have been set up for just such situations as this.

As the Younger Techapillan’s preferred means of communication was MSN, Techapillan family and friends quickly became familiar with MSN and sites such as Meebo so they could communicate directly with him. Bandwidth wasn’t always good enough to use MSN’s webcam feature, but those who did manage to communicate with the Young Techapillan this way were always highly delighted at being able to see and hear him, even if very jerkily.

The Younger Techapillan was too sick – or too at risk of becoming sick – to attend school for more than a handful of days, so the school set up MSN and a webcam at their end. Technical and bandwidth issues caused a few problems, and it was a bit difficult for the Younger Techapillan to really feel part of the class under these circumstances, but it was better than nothing.

Anyone who has had a child with cancer will know that medical emergencies – fevers, uncontrolled bleeding, mouth and throat ulcers – can crop up expectedly. One moment, all will be well. Ten minutes later, you know a visit to Casaulty is inevitable, and any plans for the next few days must be put on hold.  A complication in the Techapillan household is the little matter of hearing problems. Here is where the National Relay Service was a lifeline, enabling Techapilla to contact the hospital directly to seek advice or to warn them that the Techapillan family would shortly be turning up in Casaulty.

There are lots of online support groups out there, for both parents and young patients. Techapilla was a bit worried at first about the kind of environment online groups would provide for young patients, but the most reputable require doctor/hospital referrals for membership.

Support groups for parents, like most other forums or newsgroups, can produce spats from time to time, especially among the larger groups. However, the smaller, disease-specific groups can be a fantastic source of support, with active membership including doctors specialising in the field.

The Web is a wonderful source of information, but you do need to be careful to determine what’s trustworthy and what’s not. Of course, if you’re reading Techapilla, you’ll know that already. There are a lot of sites out there, medical sites especially, which are covers for quackery and charlatans. Here’s a bit of an eye-opener – set up a Google Alert for a rare disease. You’ll be surprised at the number of spam sites which appear on alerts. Some of them quite sickening in the tactics they use to encourage the reader to click on their links.

And the good news? The Younger Techapillan is in remission.