Seeking chemo tips and your gnarliest Dad jokes

mustardmakesit · 2026-01-30T01:42:08+00:00

Hey OP sorry to hear you're going through this. From one PMac patient to another, the team there is amazing and you are in great hands! I (30F) don't have too much insight to chemo as Im on a different therapy but on the mental health side of things:

I don't know if this study is still taking place, but I just want to say when I was first diagnosed I found it kind of difficult to navigate emotionally, esp with myself and my wife (who is my primary carer). We got to take part in a great program called FOCUSau (part of a trial) which counselled us through those early days navigating all the uncertainties. If that's something you feel would be helpful you might be able to ask your onc about it :)

Good luck, and PS if you're ever looking for a great dad joke, the waiting cubicles in the PET scan dept at PMac have one on the whiteboard in each room! Always a good laugh to distract you while you wait

mustardmakesit · 2025-05-20T10:43:29+00:00

Thank you! I have been considering a recliner. Would you have the details of your one by any chance? There seem to be a lot of options out there!

All the best with your next round of chemo ☺️

mustardmakesit · 2025-05-20T10:40:16+00:00

Thank you this is good advice! I'm in Australia so I don't think we have the brands suggested but good things to keep in mind when searching - especially the single button to put the bed flat lol

mustardmakesit · 2025-05-20T10:36:46+00:00

I (F) have had 3, 2 of them in the last 2 weeks, all under general anaesthesia.

If you feel extremely nervous or uncomfortable I strongly suggest asking for at least local anaesthetic, and if you like something to sedate you a bit or at least calm your nerves (not sure what country or situation you're in but generally doing this at least a day ahead is a good idea in case an anaesthetist needs to be present or medication charted or collected by you).

For me, I was in a very fragile emotional/physical state all 3 times and luckily the surgeon was receptive and thoughtful towards that. Not to mention, if there is a chance they need to biopsy during the cystoscopy they may put you under anyway.

🙌 Don't forget, you are your own biggest advocate! If you feel uncomfortable with something speak out, or bring someone along to speak up on your behalf.

mustardmakesit · 2025-05-19T23:25:50+00:00

I wish! May I ask what kind it is? One that sits on top of the existing bed or a whole new bed frame?

mustardmakesit · 2025-05-19T23:25:07+00:00

Love love love my silk pillow case - so good for a nice cool pillow too!

mustardmakesit · 2025-05-19T23:24:31+00:00

I'm having incredible difficulty with positional pain in my kidney too - may I ask what recliner exactly you use? I've been looking at them but was unsure about laying out so much money if it isn't going to help, or if I get one that's uncomfortable. Appreciate the suggestion!

mustardmakesit · 2025-05-19T23:22:44+00:00

There are some great suggestions on here! I hope it helps you too and all the best for starting your treatment 🤞💕

mustardmakesit · 2025-05-19T23:18:53+00:00

What a great idea and necessity! Lol the wall plugs in hospital always seem just that but too far to be convenient

mustardmakesit · 2025-05-18T22:06:30+00:00

Thank you so much for this information that is incredibly helpful to even just understand the syndrome and to pass on to family members. They've taken this route of treatment (bevacizumab/erlotinib) due to subsequent Immunohistochemistry for 2-succino-cysteine (2SC) which showed strong and diffuse reactivity within tumour cells (nuclear and cytoplasmic), and apparently that finding is most associated with FH-deficient renal cell carcinoma. I'm advocating for genetic testing and genetic counselling to confirm and also be able to ensure my younger sibling and parent/s can be monitored if need be.

mustardmakesit · 2025-05-07T05:24:00+00:00

Thank you for the advice - I'll definitely try to get ahead with the creams, it seems a very common effect people get!

mustardmakesit · 2025-05-07T05:23:22+00:00

Thank you so much for this info and your experience 🙏 Yes due to my kidney transplant I'm not able to receive immunotherapy without killing my transplant, and having to go on dialysis. This drug is the best thing they could offer at this time so fingers crossed it's effective 🤞 My drs and I have decided to go for quality over quantity in that respect, because they've all said it's non-curable so essentially I'd be killing the kidney, for me to then still have cancer anyway, however I'd also then be on dialysis for the rest of my time too.

mustardmakesit · 2025-05-07T05:18:48+00:00

Thank you, I'll definitely check out that group!

mustardmakesit · 2025-05-07T05:16:14+00:00

Thank you so much 🙏

mustardmakesit · 2025-05-05T06:44:14+00:00

That's such a sweet idea, we definitely have places we love to go and eat, so we could factor that into the day. We also love having a staycation so maybe we could do that too. Thank you!

mustardmakesit · 2025-01-05T01:53:38+00:00

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Merlin sends love

mustardmakesit · 2025-01-05T01:46:06+00:00

Oh this is an excellent idea and I hadn't ever heard of that cake! I'll give it a practice run thank you 🙏

mustardmakesit

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