June 2019
2 Kudos
Hi @Marjorie You and I share something in common in that Merkel is a neuroendocrine tumour. I have Si NETs. Spookily two weeks ago a red shiny lump came up near my elbow. I thought it was from a mosquito or spider bite as it was itchy. It came up as a hard lump that took a week to flatten a little but now it is a smooth, shiny lump. It looks like images of Merkel cell skin cancer. I’ve also had 2x basel cell lesions removed (eyelid/back). Who picked up your lesion? Did you get it checked straight away? Had a skin check just prior to this lump and next check isn’t until October. Big hugs.
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June 2019
Is it neuroendocrine tumour (NET) of the pancreas, or pancreatic cancer? If a NET, there are support groups here and worldwide that would benefit your hubby. The UK is particularly on top of this.
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June 2019
Hey @CaptainAustrali liked your cancer shoutout initiative :-). Meantime just wondering whether you can point me in the direction of info to access Super early under TPD claim? Is this easy for cancer patients with unknown prognosis to get their hands on their own money? Is there someone you know that can advise? It takes 6 months to process a claim and you need 2x specialists to sign off on this but most doctors won’t as it negates hope. I expect to be around to get my super but while I feel OK I would like to make use if it. Seems while you are unwell they make it difficult to process. Should be automatic in my humble opinion.
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June 2019
1 Kudo
Dear @Katekat ... yes I heard of this charity 12 months after diagnosis and six months post-surgery so too late for it to provide any value. Hence why the Cancer Council needs to be the FIRST go-to place for information on NETs.
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June 2019
3 Kudos
Cancer type: Neuroendocrine Tumour (NETs) of small intestine (locally advanced to 3x lymph nodes). Prognosis: Unknown (incurable but treatable). Stage 3b/Grade 1 well-differentiated/70% chance of recurrence. Survival time: 2.5 years (@2019). Post-surgery on “active surveillance” (annual blood/urine tests and nuclear scans). Word if advice: It is scary to be told you have a rare cancer (approx. 10,000), but it is slow growing and therefore time to get a 2nd-3rd opinion on whether surgery vs PRRT is the best option. Find a MDT that has dealt with NETs. Join NETs support group around the world to get best advice/ support.
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February 2019
I have huge issues with this too since being diagnosed with an incurable but treatable cancer two years ago that has caused me no end of subsequent chronic conditions, most recent heart damage added to the mix, so I use my credit card's automatic travel insurance. I can't afford ANY cover (and like you get refused cover) because of my health issues so I decided all I need are my bags and flight delays covered, which is automatic when you buy a flight via a credit card, or your bank has this as an add-on FREE service. I'm with CBA. All I do is click on the link online saying where I'm travelling to and when, and my bags, my flight, even issues unrelated to my health are covered. Sometimes the carrier you fly with will do this to. I guess what I'm saying is I don't disclose current health condition(s).
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February 2019
Hi @Cathyedu does your husband have neuroendrocine tumours of the Oesophagus? If he does there are a few carer groups for yourself and for your husband online. I ask as NETs of the Oesophagus is rare but treatable. Ridgy, who has NETs of the GI tract
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February 2019
Hi Fay, I think this is the new way forward in communication as I had a similar experience. I was told I had cancer over the phone. I have to co-ordinate all my appointments as GPs don't nor do oncologists. Like you it seems treatment is wait and see post-surgery. I've had enlarged lymph nodes that they say are reactive to the scan. It seems there are so many people with cancer you're lucky to get any kind of support, follow-up that you haven't instigated yourself. Don't let this upset you, just be your own health advocate and read up as much as you can on your cancer, pull questions together, demand appointments with specialists via your GP and find a support group for your cancer! Call the Cancer Council for info and ask them to enrol you in the Enrich program. Big hugs, we can get through this, or live with this, we have to!
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June 2018
2 Kudos
I know it has been a month since your dad's passing but I wanted to reach out and say I am sorry for your loss. I too lost my dad from cancer, as well as two sisters, and I was also in the room when one of my sister's passed away. Be grateful for the time you had and the fact they are no longer in pain. I love to go somewhere quiet and think about all the things they meant to me and tell myself I was blessed to have them in my life for so long. My father had a great innings, my sister's not so long. Big hugs. Your father will never be forgotten.
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June 2018
1 Kudo
As part of my role as a health-care ambassador with Health Storylines, this month's challenge is to highlight the health benefits of drinking water.
Apparently the quantity of water we drink has a direct impact on our immune system as ALL cells and organs of the body need water to function properly, including to:
Lubricate the joints
Form saliva
Deliver oxygen throughout the body
Cushion the brain, spinal cord, and other sensitive tissues
Regulate body temperature
Produce hormones and neurotransmitters
Help food pass through the intestines
Flush body waste
Given water can do great wonders, it only seems logical that we should start monitoring how much water we drink.
As part of this health challenge, take a five-day snapshot of how much you consume. Don’t try to drink more, just track your daily water intake to find out your normal.
There's a really great app called Health Storylines, which makes it easier to track your health. So if you want to join me just click on this link to get started. If you haven’t already, add the Health Routine Builder tool, under the Organisation and Reminder category. Then it is as simple as selecting “Add to your routine”, which allows you to type in the name of the new routine, for example: Drink 8 cups of water daily.
This is a great way to motivate and help you to achieve your goal.
Good luck, I know we will all feel better for drinking more water!
Ridgy, aka RoamingRAVE, has used the Health Storylines app since being diagnosed with neuroendocrine tumours of the small intestine in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health.
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