Night Howls
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My body clock has decided that 2.30am is wake up time this week.
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A bit of that going around, @Kiwi Angel0
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Got a decent sleep last night for the first time in a while, with the help of 15mg Serepax, one Endone, and two Panadeine Extras. After a couple of hours of alternating cold/hot packs under foob. The mesh panel has been digging into me SO painfully the past few days. I don't know whether it's continued swelling from radiation or from my lymphedema or because of the 50ml reinflation (post-radiation) of the expander a couple of weeks ago. I was blaming my fat state, but in fact when I weighed myself first thing this morning I've actually lost a wee bit of weight. Anyway, the pain-killers eased it to allow me to sleep and it's not too bad this morning.
@arpie So glad for you that your hand has come good. My pre-surgery top-to-toe bone scan revealed that I have arthritis in my hands, feet, lower back and knees. Well, I already knew about the knees. The nurse said "In the scan your feet look like a bag of little chicken bones". I have a can opening gadget too but it doesn't work on everything. A few years ago there was a building site around the corner and one day I went around and asked, "Which one of you guys has the biggest muscles?" Caused great hilarity (and a result).
As I had a decent sleep, I'm going to take my car for a big drive towards the north coast this morning, as instructed by the garage. It cost me $400 a few weeks ago to repair the damage caused by it not having been driven enough this year (short trips only while I've been under treatment). These are the "little out-of-pockets" that are invisible to other people!
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Yep, A LOT of that going on just now,@Kiwi Angel, @Sister .... I am SO sleep deprived just now it isn't funny! Took a temase at midnight & read for 2hrs & eventually dropped off, but don't feel refreshed at all. The night before there was NO sleep ... and same the nights before.
I am so SICK of sitting by the phone .... as my mobile is unreliable & playing up, so now only got the landline to rely on! THANK GOD FOR LANDLINES! Not everyone still HAS a landline! I rang the radiology clinic yesterday and asked again about an appointment - there were no nurses there at all, which would indicate they are not operating at all. I should have asked. I am less upset now than downright ANGRY, which is good!I've written a letter to my Rad Onc (she should get it today) - suggesting that she (and everyone at the Cancer Clinic there) read Liz O'Riordan's blog to get a 'professional's view of her story' from Detection to Recurrence over the last 3 years and everything in between. She is honest enough to admit that most professionals 'get it wrong' from Day 1, including her. So even tho my Rad Onc isn't responsible for the total fuck up in my getting a biopsy appointment (still waiting!) - she will be more enlightened about the emotional toll & fears that the word 'biopsy' brings - particularly after you've already had the surgery & rads etc. And the total lack of communication and incompetence that has occurred to date.
So I am going fishing this morning & hope that Keith will keep the phone near him to take any call - and remember to write down any details - assuming I get a call today (which deep down, I doubt.)
Weird that the Port Cancer Clinic won't give you the phone number of the BC Nurse!
Had a WONDERFUL night with my uke buddies last night as our final 'get together' for the year - 1hr singalong at the local RSL Club in the restaurant with everyone else joining in & then dinner. We ROCKED!!
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@arpie Glad your night last night was good.
All the stuff you're going through is just shitty.
With the problems I've had re the mesh under my expander, I've been thinking - this is yet another thing the surgeon didn't mention before surgery as a possibility, and what the implications would be. She barely looked at my boobs before surgery - didn't touch them. Surely it might have been good pre-surgery communication to say "Sometimes with older women (I was 74 then) the skin left after mastectomy can be so fragile as to not support and implant and then we use medical mesh. If that happens, it will be uncomfortable, like a big underwiring. It's a factor to consider in making your decision about reconstruction." Or something like that. But hey - communication - woohoo - ?!
Hope you catch some fish.
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SO Sorry to hear about your discomfort, @Flaneuse . Are you able to get checked out before Xmas? Is that amount of pain 'normal'?
Yes, arthritis is SUCH a pain - and then the AI meds can make it worse still!! I have it pretty well everywhere too.
Enjoy your ride to the coast .... take a picnic lunch & make a day of it!
take care xx0 -
Contact her, @Flaneuse and give her the Liz O'Riordan link to read!
http://liz.oriordan.co.uk
Yes - the lack of communication is just disgraceful. And not explaining that to you is shocking. You may have made a different decision if you'd been told the truth.
In my case - All they need is a standard message - like 'you are progressing in the queue' .....
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I know the feeling! xxxx I was amazed I didn't howl again yesterday on the phone!0
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I had arthritis in my hands and fluked on something that works for me. It stops the stiffness and swelling and pain. I am not saying it will work for everyone but it is worth a try to stop that debilitation. It is called Natures Way Joint Restore Triple Action. It has Glucosamine, Chondroitin and MSM. I have tried a variation of these but this is the only one that works, none of the ingredients worked on their own. You can pick it up at Coles, Woolies, Chemist Warehouse, etc. Coles and Woolies quite often have them on special so I always buy two or three bottles when they are more than 40% off.2
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I can't use anything with regular Glucosamine because it's based on shellfish and I'm allergic. There's a vegetarian glucosamine and I take that with MSM, ginger & Devil's Claw (Blooms). I used to take high-strength fish oil as well, but because I'm on Xarelto I don't dare risk taking the fish oil too. If I get a scratch I might spurt !
I've been using Voltaren gel as hand-cream on my hands and it helps a bit - especially at bedtime.0 -
@Flaneuse Sometimes It is really hard When we have allergies or intolerances. We think we get it under control, then bam, something else crops up. Hopefully you are able to find something that works well for you. Ongoing niggly pain is very tiresome Especially when you have to load up on drugs etc just to get it to the manageable tiresome stage. I hope that makes sense. Not much I say nowadays does.0
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@Blossom1961 Thanks. I think the hand pain is mostly from Letrozole. The oncology nurse says so. I've been on it for 9 weeks now. I'll have a review meeting with the oncologist late in January.0
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Hello Howlers
Just have to get it out.
I am hard of hearing (tinitus). I have repeatedly asked my husband to look me in the face when talking to me. Not from another room. Not through a door. Not while he is walking away. I hear his noise not his words.
Well this morning I said that we will have crumpets for breakfast and I will make a mango smoothie, but I will get dressed first.
I go back into the bedroom and close the door (you know a little bit of privacy ). He talks to me through the door. I think, typical man he can't find the crumpets in the freezer.
So, clad only in my black knickers I step out of the bedroom only to find that what he said was -
"Ann Rick is here".
Yep you guessed it.
Rick got an eyeful of a mangled scarred dented boob with a nipple that looks over my right arm and is much smaller than her sister.
I was mortified. How am I ever going to look Rick in the eye again. How will I ever sit with Rick and his wife over morning tea on their verandah again.
When I chipped my husband about it and how upsetting the incident was all he said was
"Well I didn't know you were going to come out half dressed to ask what
I had said ".
Men!2
