topic Re: Staying home with the Survivorship Team in Living with and beyond cancer

Staying home with the Survivorship Team

KatieT — Wed, 08 Apr 2020 05:20:12 GMT

Hi everyone,

CCNSW’s Survivorship team is delighted to welcome you to the Survivorship Living with and beyond Cancer online community. We’re here to introduce ourselves and get to know you better!

In these short videos we share our favourite ways of staying happy and healthy at home, and offer suggestions for Cancer Council resources that may help you through these challenging times.

We encourage you to post videos of your own so we can all get to know the people in our Living with and beyond Cancer community.

Please leave an introductory video/picture/post below.

Hope you're all staying home and staying safe.

Thank you for your dedication to supporting each other.

🐞

The Survivorship Team

Re: Staying home with the Survivorship Team

Barb_CCNSW — Wed, 08 Apr 2020 05:34:07 GMT

Hi everybody,

To find some of the resources mentioned in our videos please visit the following websites;

Webinars https://www.cancercouncil.com.au/get-support/webinars/

Podcasts https://www.cancercouncil.com.au/podcasts/

Understanding cancer books https://www.cancer.org.au/about-cancer/publications.html

Thanks

Barbora 🙂

Re: Staying home with the Survivorship Team

Lindsay — Wed, 08 Apr 2020 22:48:27 GMT

Hi everyone,

In 2016 I was diagnosed with pNETs. For those who don’t know, NETs is a Neuroendocrine tumour. Mine is located in the pancreas, hence the prefix ‘p’. Neuroendocrine tumours are often referred to as being a rare cancer, but it is more better described as being uncommon.

As detection and understanding of NETs is better known, more people are being diagnosed. That in itself is a great thing. The earlier and the younger the patient is diagnosed, the more likely that patient can be cured.

People in my situation can’t be cured, the best we can hope for is management & smart strategies by even smarter NETs specialist teams to restrict the tumour growth. Various procedures and protocols are deployed, depending where the tumour lives.

I’m very fortunate. I don’t suffer any ill effects from the cancer itself. It is fair to say that if I hadn’t been diagnosed with the tumour, I probably wouldn’t know. I would die from the tumour, probably in excruciating late stage pain, 5~ years premature. However I do know & I have a wonderful team fighting the good fight, behind the scenes.

The effects NETs has had on me is hard to describe. A lot of the issues I deal with, not onerously, are extreme fatigue and weirdly sleep deprivation, brittle bones, an inability to concentrate and aches and pains in places never experienced before. I don’t know if these issues are age, previous lifestyle or as a result of the tumour and the associated medication. No one can tell.

Well I’ve done my bit to put the insomniacs to sleep, thank me when you wake. I’ll sign off, but also make a point. NETs is not a mainstream disease & gets very very little Government funding. It relies on donations to advance clinical trials, research and the like. I ask NOBODY to contribute, I’m just making an observation. Sleep well after reading this.

Lindsay

Re: Staying home with the Survivorship Team

Lindsay — Wed, 08 Apr 2020 23:20:53 GMT

Lack of concentration, I forgot to mention what I do during the lockdown. I talk to my brother in Broken Hill, either on the phone or by zoom. I follow the news, written and electronic and I listen to music. Every second day I call me in-laws to see how they’re going, but that’s not restricted to the lockdown.

thats me done & dusted.....Lindsay

Re: Staying home with the Survivorship Team

Barb_CCNSW — Thu, 09 Apr 2020 02:29:35 GMT

Hi Lindsay,

Thank you for starting the conversation and sharing your story with us. It's great to hear that you've got a wonderful team to help support you.

Sounds like you had a hard time with some of these issues, we have some podcasts available to you which you might like to take a look at https://www.cancercouncil.com.au/topics/managing-side-effects/. I'm not sure if you've also had a chance to read some of our resources on NETs, https://www.cancercouncil.com.au/pancreatic-neuroendocrine-tumours-nets/

Thank you again for sharing with us.

Barbora

Re: Staying home with the Survivorship Team

Barb_CCNSW — Thu, 09 Apr 2020 02:34:29 GMT

Hi Lindsay,

It's great that your keeping connected with family, it's so important during this time. I think most people are using zoom or teams as a way to stay connected. I know I'm glad we've got all these various platforms available to us.

Re: Staying home with the Survivorship Team

Lindsay — Thu, 09 Apr 2020 02:43:40 GMT

It sure is Barb, I am very close to my wife’s family. I think, no I know, we have become closer after her death. We support each other tremendously. My brother & I are very different personalities. We have many arguments, almost daily, but it’s good. An alternative view to keep me interested.

Thank you & the team, I get a lot of inspiration from this site.

Lindsay

Re: Staying home with the Survivorship Team

Barb_CCNSW — Mon, 20 Apr 2020 01:00:21 GMT

Hi Lindsay,

That's great to hear you've got support from your family.

We're glad the forum posts are having a positive impact especially during this time of uncertainty.

Barb 🙂