Half way through treatment

Hi NannysFanny ,

Firstly welcome to the MacMillan online community although I’m really sorry to hear of your diagnosis & that it’s not your first brush with cancer! 

I’ve heard of varying degrees of hair loss with the IV chemo, I had a short mitomycin infusion on day one of treatment & capecitabine tablets each day of treatment thereafter, my hair thinned a little bit but not that anyone else would notice. I was worried about losing my hair when I realised I would be having chemo, I’m not sure if that was vanity or the fact that it would make it really obvious that I had cancer, probably a mixture of both to be honest! I dealt with my diagnosis very privately with only close family & a handful of close friends knowing about my diagnosis. 

It’s good to hear you’re dealing with the treatment well so far, I hope that this continues for you. Try & stay away from Dr Google, much of the information out there is outdated at best & completely wrong at worst. Feel free to ask anything you want here, we’re an open minded bunch & will try & help however we can. 

Nicola 

Thanks. Dr Google is not my friend anymore. My family and a few friends know my primary site (which is embarrassing) but my wider circle just knows I have a rare GI cancer and need to get treatment and not be around a lot people bc of my immune system. 

I appreciate the support here bc we're all in the same boat and none of us like it or want it,  but will move strongly through and get to the other side.

I lost a ton of hair today so am getting it cut short tomorrow.

Thanks for your kind words and encouragement.

Hi NannysFanny,

Damn it to getting a secondary cancer! It's a fear for all of us, I guess, but to get freakin' anal cancer after your first rodeo is just rude of the universe.

I had some kickass hair if I do say so myself. I didn't start losing mine until the treatment was finished and I was in recovery. Cut it short, then shorter, and finally got a crewcut which I adored and kept until this past winter. I've just started letting it grow again, and after being a long-locks girl my whole life, now I'm bummed that it's long enough to require combing again.

Having no hair was so freeing. One of the few gifts this difficult journey  has brought.

I thought I had hemorrhoid issues too. Then it was a skin tag. Then....oops!

Hang in there, hon. It's a nasty cancer and a challenging treatment, but at least it's very beatable.

Hugs

Suz

My hair is falling out in handfuls. I did just get it cut very short and it looks sort of spiky for now. They say I probably won't lose it all, but I'm resigned if it happens.

Yeah, it was a shock to hear the diagnosis. I was on jury duty and hearing a case when the doctor left a voicemail. I couldn't answer the phone in the court room. I stayed focused on my civic duty for the day (and surprisingly found him not guilty) and then fell apart when I got home.

My family doctor had made me feel like such a whiny baby for not being able to handle hemorrhoid symptoms. At age 71 she thought I shouldn't go through the excision but should be able to deal with it. So I delayed my surgery consult for 6 more months until the itching and bleeding was so extreme I decided to have it excised. 

Now I'm glad I did get the diagnosis before it was worse.

I use a Bible verse over and over to get through. ,"This momentary light affliction is working in me for the eternal weight of glory." I hang onto the idea that this is a momentary and light affliction. It helps keep me out of the rabbit hole.

That's how my gastroenterologist is about anoscopies!

I swear I want to throat punch the next doctor who sneers at any one of us for wanting help with chronic butt pain.

Hugs

Suz

Oh Suz, luckily I haven’t come across any of my doctors sneering but one of them does act a bit miffed when I say about what we can go through after treatment. She as much as said to me that that’s the price we pay I’m afraid. What can you say to that! 

Julie

Yeah, that's actually more prevalent.

"It's better than cancer, isn't it?"

:(

Yes, I have a (close) friend that when I spoke about the side effects, said, well you are here aren't you?  Yes I am but sometimes I feel that I have aged thirty years in the last three  and it makes daily life a struggle.

Same with me.  I went through a really bad experience at the hairdressers couple of years ago and had to have long hair cut short due to the damage they caused and only now have my hair in a good state (grown longer again too)

If I lose my hair then so be it, nothing I can do.  But, like you this is a pride point for me!