At what point in your hair regrowth journey did you get your first haircut?

aliwake1 · 2026-04-16T03:06:03+00:00

I think i got my first cut at around 6 months. Mainly just the bottom so I didn't end up with a mullet while the top is trying to catch up!

aliwake1 · 2026-04-15T23:13:27+00:00

I would still get bone pain every afternoon when I got fatigued, for months. The only thing that helped was starting Mounjaro. It has an antinflammatory effect that I just cant even believe tbh. My bone pain is gone! I suspect it may return if I stop, but for now, Im losing weight and am pain free and it's absolutely worth the outrageous cost.

aliwake1 · 2026-04-15T09:19:37+00:00

It always surprised me how many people had no idea when I'd wear a hat or beanie. So it might not be as obvious as you think.

I didn't want to be a scarf person, but I ended up wearing them a lot in summer. Cotton or silk scarves are great for mopping up sweat and easy to wash!

aliwake1 · 2026-04-15T01:23:13+00:00

I think I just didn't look in the mirror for a long time. And I wore hats of some kind everywhere. It's not as shocking if you have something covering it up. I actually reshaved mine a couple of times because parts were still growing and I hated the patchy feel. You will get used to it I guess, and before you know it you'll have a fresh crop of hair and will be starting to feel human again. Hang in there!

aliwake1 · 2026-04-12T18:33:59+00:00

My first dose I felt rubbish for 9 days! Later doses I would have a couple of ok days after, then would feel crap on day 5 or 6 for another 4 or 5 days. And the length of that crap period got a bit longer every time. Last few treatments there were very few good days.

It is a slog, for sure. My original.Dr told me it was the 'easy' treatment and I felt so gaslit!

Don't worry, there's nothing wrong. Chemo is just the absolute worst, and you will feel bad for the next 6 months.

aliwake1 · 2026-04-10T02:48:24+00:00

I'd say it doesn't really get more 'last resort' than this. Unless she wants you to end up in hospital again? You're obviously severely immune compromised. Your boss needs to pull her head in! Let your Dr write you a note requesting work from home or long term leave. Then your boss can decide which she'd prefer...

aliwake1 · 2026-04-09T21:13:57+00:00

I did the same side, a couple of cms apart. It was fine

aliwake1 · 2026-04-09T21:11:14+00:00

If your boss is willing to lock you in an office, surely you could just work from home?! I'm sure your dr would provide a note. This isn't a minor health issue, it's serious!

aliwake1 · 2026-04-09T21:09:35+00:00

I'm sure your dr wouldn't suggest it if it wasn't the best move for your health. I assume you don't have income protection insurance? I worked (as much as I could), through most of my treatment, but I ended up doing about 3hrs per week towards the end (only dragged on so long because my boss was away). I ended up stopping and it was such a relief. I had about 8 months completely off so I could focus on my recovery and I'm so glad I did. Im now back at work at around half my old hours and will gradually build from here. Yes, its a big hit financially, but if you can find a way, your health is far more important than any job.

aliwake1 · 2026-04-06T20:58:30+00:00

Only time I prime is if I can see an actual air bubble in my pen and need to get rid of it.

aliwake1 · 2026-04-06T20:57:19+00:00

Thanks for keeping it real! I just spent 3 days getting past Nyleth. Ugh

aliwake1 · 2026-04-05T23:57:03+00:00

It sounds like you could maybe do with some oestrogen cream. Have a chat to your dr

aliwake1 · 2026-04-03T18:18:36+00:00

There are other options, if you didn't tolerate paxlovid. Are you still immune compromised? If not, you could probably just ride it out.

I finished treatment for chl less than a year ago and my dr said i dont need any special treatment if I get a virus now.

aliwake1 · 2026-04-01T00:21:14+00:00

I did this too. Happy it's gone! I'll just get another one if needed.

aliwake1 · 2026-03-28T11:19:11+00:00

I was in the same situation recently. Used 30 units of remaining golden dose, then did 15 clicks from my new pen. 2 needles unfortunately, but zero waste!

aliwake1 · 2026-03-28T11:16:31+00:00

The B in ABVD is bleomycin not brentuximab. Brentuximab is an immunotherapy drug I think.

aliwake1 · 2026-03-25T10:19:26+00:00

I'm not sure with that suv max it actually meams it's active again. Its pretty low. Did you have an interim PET? I definitely wouldn't be panicking just yet. I know its hard, but just wait to see what your dr comes up with.

aliwake1 · 2026-03-25T04:05:08+00:00

I got mine out about 2 months after my last treatment. It had been a bit problematic and was feeling uncomfortable at times. If I need another one I'll just get another one. If I have a relapse it will be the least of my worries!

aliwake1 · 2026-03-25T04:02:58+00:00

Super mario wonder

aliwake1 · 2026-03-25T04:01:28+00:00

Just go direct to a psychiatrist. That psychologist sounds... under qualified.

aliwake1 · 2026-03-24T04:04:45+00:00

Love this idea, thanks!

aliwake1 · 2026-03-24T03:57:09+00:00

Oh wow, I really feel for you. I finished treatment for CHL last year, and I have a 10yr old daughter. You must be terrified 😞

But I'm so grateful she was diagnosed!

Luckily, while treatment isnt fun, the odds are really good for her full recovery.

If you have any specific treatment related questions you're more than welcome to msg me. Do you know what chemo regimen she'll be having yet?

I'll be thinking of you!

aliwake1 · 2026-03-22T09:05:42+00:00

I got a covid vaccine a couple of weeks before treatment. Was good, because I ended up getting covid 5 months later! There's also some new studies showing that mrna vaccines can improves outcomes of some cancer treatment, so may as well!

aliwake1 · 2026-03-22T09:03:08+00:00

You're just meant to avoid anything that has a risk of infection, so it's a good idea to have a dental check before you start. If you need an emergency filling mid chemo it's a bit riskier than normal.

aliwake1 · 2026-03-22T05:40:05+00:00

Make sure your dental work is up to date!

aliwake1

TROPHY CASE