Kia ora e hoa ma, some of you on X may already be up with this news. Mr Me has been diagnosed with Stage 3 AL Amyloidosis. It isn't a blood cancer, but is like a blood cancer, and is treated the same way - with chemo. It's affecting his heart and kidneys, so the best we can hope for is remission - 2 - ThreadSky

auntyfeeble.bsky.social • 271 days ago

Kia ora e hoa ma, some of you on X may already be up with this news. Mr Me has been diagnosed with Stage 3 AL Amyloidosis. It isn't a blood cancer, but is like a blood cancer, and is treated the same way - with chemo. It's affecting his heart and kidneys, so the best we can hope for is remission - 2

Comments

cyncharron.bsky.social•271 days ago

I’m so sorry to hear this news. Sending aroha to you both.

tonywelly.bsky.social•271 days ago

❤️

dissentra.bsky.social•86 days ago

💔Sending good vibes across the miles to you. I'm in the same boat. Recently diagnosed with small cell lung cancer that's already spread. Chemo starts Monday, but the best I can hope for is remission. Even then it will return anywhere from 2 months to a year or so after remission. It always does.

emeraldro.bsky.social•271 days ago

Sending love and strength to you both ❤️‍🩹

auntyfeeble.bsky.social•271 days ago

But given how much his heart is affected, we can't assume this will happen. There are some pretty stark statistics here: 40% of people with Stage 3 AL don't get past 12 months, and only 40 % don't get past 24 months. So we are going to have to make the most of it now. - 3

auntyfeeble.bsky.social•271 days ago

We are very fortunate that we are able to afford an extra chemo drug that is unfunded, and that we are able to afford extra help around the home, around the garden, and generally. We thank Mr Me's parents for their foresight and hard work that has us in this position. As for our plans? -4

auntyfeeble.bsky.social•271 days ago

Once again, we are fortunate that we can throw money at some things, and will be fast tracking the landscaping of Mt Somers so that he will be able to sit on the deck there and enjoy seeing his vision come to fruition. Any planned trips will hopefully happen, but we have to be realistic. -5

auntyfeeble.bsky.social•271 days ago

As you can imagine, this is a bit of a shock. The lessons - be a hypochondriac and go to the Dr when you can't shake the fatigue. Don't assume your weight loss is all down to hard work. Don't put off your happy plans. Do actively love your loved ones. -6

auntyfeeble.bsky.social•271 days ago

I'm struggling with the knowledge that I've lost the energetic, incredibly physically strong, practical husband. I've still got his love, humour, kindness, compassion, but the physical stuff has gone. And almost certainly won't be back. The chemo will extend his life, not improve it. Xxx

eloquentsonia.bsky.social•271 days ago

Oh Fi, that’s awful. I’m so sorry.

carenwilton.bsky.social•271 days ago

So sorry to hear this

sarah4ilam.bsky.social•271 days ago

Oh Fi 😭 I’m so very sorry. Bloody bloody hell.
And yes, enjoy everything when you can is great advice ❤️

mlbkiwi.bsky.social•86 days ago

dissentra.bsky.social•86 days ago

And hopefully reduce pain? My best pal lost her husband to cancer this year after 30 yrs of happy marriage. Saddest bit for me was to watch him change rapidly from being her rock into bring frail, helpless, almost childlike and totally dependent on her for everything. ❤️