All excellent points. I think I'm still at the keeping people away point. Offers of coming around to see me send me into a panic. No. I'm busy. I'm in recovery mode. I just don't feel like seeing people. I see my family every day and that's more than enough for me to be dealing with. My husband is working tomorrow -- on a Saturday - he's asked our kids to call in. Just in case I'm lonely! FFS! I love the weekends because there's no radiotherapy. I'm usually sick to death of every day going in for treatment. I really look forward to the weekend and stay in my pj's to remind myself I'm recovering. I am really happy on weekends. I'm nearly through it. Eight more treatments to go. I then want it to be over. Done with.
Today is the first day I've ventured to the butcher. As my mouth is askew until I get new bottom dentures which will hopefully straighten my mouth out a little, I really don't like people seeing me like this. I wear a scarf to hide my neck but I can't hide my mouth. I feel a bit fragile out in the world. A bit raw. A bit changed. I know that in the scheme of life it's all good. Just a minor hiccup. I'm hoping it will get easier.
Claire - I hve to confess that I get 10 hours sleep every night and can attribute my good resilience with the treatment to that partially. I have 50mg of Endep each night and it is bliss. Before surgery I hated those times when I would wake in the middle of the night which is the worst time for people with this diagnosis of the big C. It's cold, dark and makes you feel very alone. It is a bad time for those dark thoughts and worries. I'm very grateful I no longer have that problem. Endep is an anti depressant that miraculously fixes osteoarthritis, strengthens the bladder and gives you good sleep. It is also excellent for nerve pain which is particularly important with an AAC tumour. I don't take any other pain relief.
What else have I learned? That we are traumatised. The diagnosis tips our world upside down. All our thoughts and plans go onto a diversionary path. I think we do get to a point eventually, hopefully for most of us, that we know we have come through it. We're not quite there yet but can now see the finish line. That's where I think I am right now. The worst is over. There is hope for a future. That's a good space to be in.
Take care. Be well. You're doing great!
Hi Ginger Rogers
It sounds like you need to slip on those taps again. I get the barrel of nothing. I hate it. That line describes my darkest times on my journey. Our journeys may be different but cross over on many points.
Vouchie is correct. Cheese. It's a winner. In fact, I could just append your list to mine. I'll wait until you're up on the dance floor and I'll pinch them while you're not looking 😈
But.... but... seriously... I can't have soft cheese while on chemo. The second darkest tragedy on my journey. No brie. Only hard cheese until November. 🧀🧀🧀🧀🧀🧀🧀🧀🧀🧀🧀🧀
And no wine! Until November. But then... Only wine that doesn't set off my anaphylaxis.
Talk about a snow flake. ❄❄❄❄❄❄❄❄❄❄❄❄
It would be nice to go out for a meal and order anything from the menu, but reality bites.
#3. Still going with the Clexane injections? I'm glad mine were in the thighs, but I've got a few lumps and blood spots that don't seem to be healing. Never mind. I tend to wear longer shorts these days. I left the Warrick Capper look behind in high school. Good thing rather. A mankini is more tastefull than Warrick's shorts.
But don't give up on the abs. I have some wierd bumps and scars, but i'm doing some exercise therapy to try to rejuvenate my core so I don't pop a hernia out. Geez! I made it sound like child birth. Bad enough I've got Pepper there as my unwanted appendage. Can't wait for December, when they lock the little bugger away again. Strange thought... I wonder if I'll miss him.
Now... here is a funny thought. Pepper is somewhat gender neutral. Sometimes I refer to Pepper as "her". I think i've seen too many Ironman movies.
Strange segue... no? Back to abs... I'm trying to keep my weight on, but make it muscle weight. I've only lost 4kg overall, but it is fluctuating down and back up over my treatment. If I make it down to 84, i'll be my ideal weight, but with my new outlook on life, I need it to be muscle. Live a healthier life moving forward. Not too bad so far, as my love handles have receded somewhat.
So don't give up on the abs. Us special people, with that wonderful gift of cancer (intense sarcasm intended), deserve to be wise and have a rockin' bod. Or a one piece swim suit in case it's just a pipe dream.
Interesting about sleeping with the light on. I've had to do it sometimes if feeling nausea or pepper's needing extra attention. Just want to make sure I don't encounter the jutting corner that comes adjacent to the ensuite door. But let me quote your words from your first response to me. "Am I nuts? I bloody well hope so! Everyone has their own way to process this I suppose". Leave the lights on and enjoy seeing the light when you wake up. And I'll leave the lights on so I don't end up with a nasty big bruise down my face and a big lump on the back of my head. People will be calling spousal abuse and I'll say I just walked into the door.
Here is some irony. I've not worn singlets under my shirt since childhood, but they are keeping the chemo cold away and helps hide Peppers so it doesn't look like I'm shoplifting. My wife started calling them my wife-beaters. If I run into the door, we can call them husband-beaters instead.
But take back your wish. You don't want to feel chemo. Honestly, surgery hurts more and you've experienced that. I don't get a lot of pain. Most of my chemo pain is manageable via avoidance. You know... don't pick up the frozen food from the freezer... don't go outside in light clothing on a cold day. Only other pain is in my jaw when I start chewing, but subsides in about 30 seconds; or when I'm having pain in the tummy from gastro issues. The worst parts are fatigue, making you feel useless and allowing depression to kick in; and nausea and lack of appetite, which contributes to fatigue, weight loss and reluctance to take medication. Essentially, it makes you feel shite for a few weeks, starting with side effects that fade eventually over the cycle, only to have new ones kick in and fade later. Thankfully the rest period in the final week is awesome by comparison, but you still feel it. I can only sum it up by saying that chemo sucks balls.
🙋♂️well wishes for you 🤦♀️
🙍♀️my dark mortality 😷🤢🤮🧟♀️☠👻
Satisfaction 🚶♂️🤺 (Sorry. No karate emoticon)
Alternative 👫(Sorry. No hugging emoticon)
Ginger, I wish you well. Please don't stab me. Send me a virtual hug. At least I'm on the same side of the cancer coin.
Don't be a stranger. Slip on those taps and dance on, one step at a time. No time for being a wall flower.
I am having your weekend this weekend. I've asked for no visitors. It's my chemo doldrums, but it's started early. I will be in my pajamas mostly, but I am planning to try harder to exercise and fight the fatigue. I let it beat me last time. I'm determined to be stronger, despite the side effects being stronger this time around.
I get your reluctance to go out in public. I am quite embarrassed to go out since I have an ostomy bag. I've researched with my personal psychologists, Dr Google and Dr YouTube. I've found a lot of people who are out and proud. They don't let it get them down. They own it and flaunt it. That's not me. I hide it. I'm embarrassed. I go to public disabled toilets to have more privacy. I have taken to wearing a pregnancy belly band, covered by a singlet (aka a wife-beater), then my shirt, then a vest (which has sort have become my trademark recently). It flattens my bag and other unnatural post-surgery shapes. Then the vest breaks up my shape just a bit more. Is it too much? It allows me to face public life with a little face saving dignity. Should I be braver? I'm reasonably making an effort.
And speaking of hiccups, chemo causes me to have frequent hiccups. Weird?
I'm jealous, and probably Claire is too. 10 hours sleep is divine. Unfortunately, Pepper needs attention through the night. Sometimes 2 to 3 times a night. I've gotten a little use to waking to a soft alarm and working out if I can drift off or if I have to force myself out of bed. I actually have some nausea drugs. I can only have them at breakfast and lunch to avoid insomnia. It probably wouldn't hurt me.
Trauma? I guess. It's not a word I'd thought of. Well done. Yes. I can see the finish line ahead and I'm clinging to it.
But wouldn't you know it... I just got the hiccups again.
Take care. Keep the finish line in sight. Send some more puppy photos 🐶
Good evening! I spoke too soon. I'm up because I couldn't get to sleep tonight. Jinxed myself!
Phil, I don't think you need to be braver. You are brave enough already. I absolutely understand your feelings about going out in public. Do whatever you are comfortable with. I'm pleased to know the ostomy is temporary and will be removed in November. That's pretty good! Very strange about your hiccups. Uncomfortable too.
I think I'm awake because I'm worried about my hair. Vanity. Sheer vanity. I guess I thought it wouldn't fall out as I wasn't having chemotherapy so am a bit distressed right now. I've been looking up wig places and for some reason that really frightens me even more.
I'm glad you're sharing the weekend with me. To pass the time this week I have been watching a series about hoarders and am morbidly fascinated with the condition. The mess and detritis of it makes me pull up my nose at the horror of it all and it's really good at getting my mind off other things. There's not much else around to watch that actually takes my mind away from the reality of life. I will hopefully work on my quilt and cook lots of chicken broth.
Speaking of abs - I have a story for you. One of my daughters has been practising Kung Fu for the past 8 years. She is hoping to go for her black belt at the end of this year. She runs with her German Shepherds every morning at 6.00a.m. She has two daughters who also run and do Kung Fu (plus ballet and music) so she's a pretty busy mum and works. To prepare her body she trains really hard on her fitness. She is now up to 250 sit ups every morning and she has abs of stainless steel! Sheer determination and willpower that is. I am in awe of her. You too can have these abs. Maybe just start off slowly and work your way up.
Thank you. I have the finish line in sight and will either run to the finish line, fall over just before it or stagger over the line and collapse. Doesn't matter. As long as I make it through to the finish.
Goodnight and sleep as well as you possibly can.
250 sit ups? There goes my manhood. I'm not allowed to do one in case I pop out that hernia. I should give my wife-beaters to her. Sounds like she'd easily hand me my arse on a silver platter.
250 sit ups! OMG!
I was reading Rick's comments on hair loss. He has taken that path and took the shave. I may not have to but I got my haircut recently. I was growing my hair and beard as a coping mechanism for my cancer journey. However, if I got a job interview along the way, I would cut my hair short... and I did.
I think I scrubbed up alright for a guy on chemo. At least if my hair thins, I won't have such a drastic change looking like a thinning hippy. (Sorry, I can't smile in selfies when I'm trying not to make it look like a selfie)
I've tried not to stare, but I've been observing the women at the chemo unit with hats and scarves. or is it scarfs? Dr Google says both are acceptable. Now I did say observing, not perving. My wife accompanies me to so I'm on my best behaviour at the chemo unit. Unfortunately, it's Canberra and still winter so none of the girls are out and proud, but I haven't noticed any wigs. Now I am not saying I watch sex in the city, but I saw this episode which I thought was inspiring.
Dawn has arrived now but I've been awake for a while, since Pepper's last alarm went off. If you are not sleeping, this really is our weekend together.
250? Claire probably couldn't tap that many steps in her post surgery state. 💃
Don't feel you have to run to the finishing line. One day at a time, One dance step at a time. Remember How it goes in a marathon. You don't have to be first. Crawl across the line if you must. 🏃♀️
I hope you found some rest time overnight.
250? Take her dogs on your run. They can drag you over the finish line.
Here is a laugh for your weekend.
We have a new robot vacuum cleaner we call Weebo. Sally seems unsure of its purpose.
Watch "Sally and weebo playing" on YouTube
Sally and Weebo
I lost Weebo. She ran away. When her battery is flat, she could be hiding anywhere in the house. Eventually found her under a recliner chair. Hiding from Sally no doubt.
Thanks for reaching out, what a full on story and being 36 too- I keep hearing we’re the young ones. I also had issues with my GP patting me on the back and telling me it was normal even with a history of cysts and high risk markers.
I’d already had one surgery to remove cysts and in less than 12 months I was back with similar symptoms and generally feeling tired and off, but nothing too weird, I just felt that something was amiss. After the second cystectomy is when they found the cancer. Initially they thought it was Stage 2 endometrial cancer, however after a radical hysterectomy (ovaries, fallopian, uterus and cervix removed) they’ve since confirmed it is stage 1B2 cervical cancer. My case got streamlined to head of oncology because at each junction of testing my results didn’t match up. When they opened me up they expected a big mass on the lining but actually found a small mass at the junction of the cervix and uterus. They’ve removed it with clear margins, so good news, but CT scans before the surgery shows a spine legion and I’d also had some thyroid growths that need further investigation. Everything is on hold for healing. I’m 3 weeks into recovery, 2 weeks battling wound infection and losing my mind on hormone patches to deal with surgical menopause. From my second cystectomy to now is just under 6 months- my surgery for hysterectomy was 3 weeks after the first surgery- so it’s been a bit of a whirlwind.
reckon you might be right about finding a few good friends to talk to, I’m also booked in to see a psychologist next week.
The big thing I’ve noticed is that because I’ve got clear margins all my family and friends have defaulted to ‘oh you’re fixed so that’s that’ when clearly it’s not ending.
I’m super positive about the prognosis but im also realistic, that this is a long journey back to a new kind of normal. Anyway that’s where it’s at today, it’s day to day and unfolding. I hope you too are doing well? What’s the prognosis now- and is the action plan okay?
I’m hoping in your top 5 inventions is:
1. All Cheese
2. Gooey cheese - Triple Brie, Camembert
3. Medium soft cheese- Havarti, Swiss, provolone etc
4. Fresh cheeses- mascarpone, mozzarella, cottage cheese, fettas
5. Hard cheeses- grana padano, pecorino, parmigiana Reggiano
All hail to giver of joys- cheese.
So good to hear from you.
re the kids coming over, I reckon if you’re not up to it just answer the door in your PJs. Monosyllabic answers. Have the TV on. Or just tell them you need some ‘me’ time.
It’s hard isn’t it? I tustle between wanting company but then feeling like I need to prepare for company which is exhausting. In our family, you’d never have guests over without offering a bite to eat, and a cuppa- then the visit is a long rambling convo. I’ve had a steady stream of people coming and visiting. There are only 3 people who come over where I know they’ll bring stuff, make tea, and help. Otherwise I’m spent and so tired within an hour.
The weird thing I’m noticing is the ‘soppy eyes’- that’s my lingo for sympathy eyes, I know you will know what I mean. Friends who look at you like there’s no hope. Then I find myself saying ‘oh it’s okay, I’m good’ then they cry and I’m trying to reassure them. I’d just prefer to be alone.
I cant imagine how you must be feeling with your mouth and neck, I just think you’re a powerhouse- so freaking courageous to own your vulnerability and step through it anyway. The only consolation is that people are so wrapped up in themselves that maybe they notice something but it’s just fleeting.
Re the sleep, the trauma, the light and dark- it’s all a process right? I’m so glad you’re getting good rest, it makes a difference. For me, I need to hang all my fears out and talk with raw abandon to my psychologist next week. I’m a bit crap in that I gloss over things and try to be brave, but I know now is the time to be honest about it all so I get all the help I need. There’s something in that. It comes back to honesty. I reckon that’s the biggest gift cancer has given us- cutting through BS to be real.
I hope you’re having a good Saturday xxx
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