Dont know what lymphodemia is, but...yeh, I do that. Stuff this cancer business, do what you can, when you can. Forget the body is stuffed sometimes....
Andrew the old hippy
I forget... I try to look after the house, kids & husband like I use to.. But the physical energy & muscle is just not there.. It becomes very frustrating.
Cinamin - Yep, I find the same thing - the loss of physical ability - muscle wastage as a side effect is a really good one, wonder what genius thought of it? (bastard)
I cop it bad after chemo for a few days/week - trouble is, your brains also a bit scrambled so its very hard to recognise whats happening and just sit back and let it pass.
And in some ways, its almost a personal insult - what do you mean, I CANT do that anymore - and this is normal, everyday type things, not climbing Mt Everest...
Andrew
I understand Cinamin. I felt like this for years. Have decided to just do what I can do when I can do. But this sometimes gets me into trouble.. Baby steps and when you want to say no, you can say no.
This I find is the biggest hurdle for me.
Take care Cinamin
Annie
Hi there Andrew,
I felt like that too. I found Chemo was worse than radiation with the nausea too. Being an active person it was almost like please kill me now...
As for the personal insult bit, more like a shovel to the face. What do you mean I can't lift more than 5kg. There isn't much left in the world that weighs less. My second born was at this stage almost 9 months old and definately weighed more than 5kg.
I understand there are things we are not able to do anymore but sometimes I just wish I could go back in time and change things and take more chances. Appreciate the lifting of a heavy mop bucket of water where as now it's a little bucket with a squeegee type mop thing. They don't clean like the heavy duty ones...lols...
I guess I just forget sometimes. Having a double mastectomy, I know what I have had done to my body since cancer, but when someone looks at me, they just assume I can carry heavy things like the norm.
Today was no different. In the shop, my partner carried about five bags and also attempted to grab a new box of dinner plates we just bought. i suggested to him I will take some of the bags and the lady at the register said to me, you can carry this box. My partner god bless him said to her, no she can't, I will. The lady just looked at me stupendously as if to say, what, she isn't carrying anythin. I just said, I hurt my back. I do feel a little guilty sometimes. What about you?
Annie - yep, spot on. Same things, different way of saying it. Miss it, miss being able to, well, do ordinary things.....
Being older and sneakier than the young uns gives me a sporting chance I reckon. Bloody hope so.
Hey - personal question - do you find your reacting to chemicals more - regular soap powder is toxic, cant go near it. Switched to the "low allergy" stuff some time ago.... drying paint, cant go in the same room. Cheap teen chemical body stuff that smells like, well, a product from an oil refinery (which it is...I remember basic organic chemistry). I used to live in Balmain, in Sydney, across from the soap factory. A sensory experience, indeed. Get the same thing now by walking down the wrong aisle in the supermarket ....
So. Does ya good to have a good whinge occasionally, stuff the onlookers. Saw it once in a shopping centre, this lady was paying out on her (partner) really big time, voice like a concrete saw, mouth like a sewer. Spectacular, it was. The whole place was in stunned silence as she regally ascended on the escalator, abusing the living daylights out of him. No idea what it was about, dont want to know either.
Take Care Annie Girl
Andrew the oldhippy.
Yes definately react to certain soaps, deodorants, foods etc...
Have changed my eating patterns too. No dairy. I do cheat though. Love cream. Changed my environment too. Am now living on the top of a hill. The kids love it. We have two cabins which I hope will be run of it's feet with people wanting a piece of this paradise for a weekend.
No pollution now where I used to live in the heart of Melbourne.
This I believe has helped immensely. Am now on anti histamines where before I was able to smell the roses literally. Jasmine is the devil now. Can smell it for miles away and then the reactions...
Moo Goo soaps are fantastic. I buy them online. Also, anything baby soaps. No chemicals are a must. I can spot cheap perfumes too.
They make me gag.. or is this something I tell my partner so he has to get the more expensive 🙂
Omo sensitive is fantastic for clothing. If I use anything different it can be devastating. A rash appears.
Lymphodeima is the swelling of limbs where fluid becomes trapped. This is mainly due to the removal of the lymph nodes. Only adding this as I noticed the question earlier if still interested.
October I plan to have a big Fundraiser bbq get together on one of our hills here. It's the least I can do for the wonderful care the RMH has given us. Do you find you do more for charities now?
Take care Andrew
Annie
Mmm, this could turn into an episode of Dave and Mabel if we are not careful...the big questions....where does the electricity go, after it leaves the toaster?
ALDI sensitive powder (clothes washing type) works OK for me - I have always thrown in the powder, set the machine to its lowest water level, fire it up and let ALL the powder dissolve. Then, crank up the water level and throw in clothes..my lovely wife got the wrong powder one day, did it the traditional way, and she got the rashes this time.... if you can find chunks of undissolved powder in the clothes, you aint doing it right.....arrr, you young buggers, what would you know etc etc...
body soap - so far, Pears transparent has no ill effects.
shampoo - your spot on there, ANY "extra" ingredients are a NO NO. So its plain baby shampoo.
Understood now re lymphodemia - glad I havent got that one!(sorry, gallows humour again)
Andrew the oldhippy.
Annie, It's not that I forget cause every step is filled with pain but I refuse to go from a healthy fit active and strong person to a virtual cripple. If what is left of my bones break along the way at least I can feel a little bit normal for a short time. I am not going without a fight. The doctors say there is no cure for multiple myeloma and my time is soon over but I dont believe them. At least there is no more Chemo or Bone Marrow Transplants so there is always SOME good news!!
I get really angry when everyone thinks you are OK just because you have gone back to work. Nobody asks how you are feeling anymore,all the sympathy has gone, I sometimes feel like screaming,I have terminal cancer I am not OK,but I dont.I am so sick of this, every day is an effort.
Hi Dolly,
I am so sorry to hear this. I know how you feel about the sympathy bit. You are amazing to be going back to work. Is this a job you enjoy?
Hoping you are as best as can be
Annie
Hi,
I just read your comments of 5th Sept 2011 and agree with you entirely. Just because we are functioning in the world again every one assumes we feel fine.
I replied to the last message I had from you but it seems it and your last message have gone astray and we have lost contact.
I understand from your comments that all is not OK and I am thinking of you.
I find that as I have returned to some of my old activities and interests my friends expect me to be able to do all that I used to.
I just can't and get very very tired to the point of exhaustion.
I am learning to be very blunt with them, and it is obvious that they just can't comprehend how bad you feel at times.
Hope to hear from you soon. Jenny
Hi Jenny
Sorry for the delay in replying. Have not been well. I will never understand why people - family and friends and strangers - think that MM is contageous. I hate being treated like a leper.
Like you, I try to hide the pain and discomfort as much as possible from everyone but as a result they think I am normal.
They wont accept any other explanation. I get exhausted going from the bed to the toilet - 15 feet away.
I thought about being blunt with people but that doesnt help at all. They just dont understand. At least you can do a litte of your pre cancerous activities. Only you know how much to push yourself. Dont let others stray you. Its your body!
As a result of all this I get very lonely and sad. Just something else I have to hide from everyone except those- like you- in the same situation. Its nice to be able to talk to someone as it helps greatly. I hope it help you too. You can contact me.
The worse part for me is that my body is destroyed. I was strong fit and healthy and had a very good body if I do say so myself. Not that I'm blowing my own horn but now I am just a withered shadow. This causes deep depression and my wife has started to distance herself from me. I cant blame her really but i feel like a big NOTHING. Thanks for listening and hope to hear from you soon.
Best wishes
Ash x
Annie333 thank you for this. It has been almost 2 years and every time I tell someone when I was finished treatment I know they look at me and think, so why are you not back at work, doing what you did before, etc.
I have to stay home this weekend from my son's hockey tourney because I have been breaking out with shingles so badly I was hospitalized last week for a rash that the doctors are stumped by. They don't think it is shingles yet my gp who saw it in the beginning swears it was. I think it just manifested more than they have ever seen.
My husband told me to just think about 'next year' and the sad thing is is that is what I've been saying for 2 years now. I thought I'd be so much further ahead then I am.
I know I have to be grateful there are worse things and people worse off but it get tough to be grateful for only being a little sick.
I think I'm doing baby steps because compared to what I used to do they are minuscule but they still I guess are too much.
What to do?
Survivorsays thanks you!
Just read what you wrote some time ago about lifting and fatigue etc. I have been assessed tentatively at smouldering MM, but have had three fractured ribs and a fractured spine. Am starting to come out in weird spotty bruises and am exhausted to tears while I try to maintain a full time teaching job.
I am starting to listen to my body and finally learning to say 'no' but it is a difficult thing to do at work which I love, and am at home with a teenage son who is not the most nurturing kind (and I don't want his life to be obsessed by this anyway).
Shopping is almost impossible without him to lift things into the trolley, onto the counter and into and out of the car. I worry how I will cope without him but he has to live his life and will be travelling next year. I wonder how long the 'smouldering' will last as I seem to have a lot of Stage 1 symptoms. I have been a single parent for 18 years and am very independent and used to having battles which I get through - but not this one. Still I am not letting this disease define me and while I can I am going to be as normal as I can - and feeling lousy!!
I understand your predicament, I went from a vibrant, fun person to alsmosy a cripple within 4 weeks! Hate it! Just had 2 weeks of radiation to ease the pain from tumours in my pelvis, did bugger all, now just waiting on the chemo, what do we do, we have no choice! Been knocking back chemo for 4 years but then it comes a time with this pain that nobody even mentioned to me with MM.
I understand your predicament, I went from a vibrant, fun person to alsmosy a cripple within 4 weeks! Hate it! Just had 2 weeks of radiation to ease the pain from tumours in my pelvis, did bugger all, now just waiting on the chemo, what do we do, we have no choice! Been knocking back chemo for 4 years but then it comes a time with this pain that nobody even mentioned to me with MM.
Hi Maureen. I have tagged on to a conversation between Annie333 and Andrew the Old Hippy (I am 59 and sitting here burning my incense while I write if you read this Andrew). I wonder how you two are going as you both write so well and I totally love your comments despite the black humour and 'painfully' relevant comments. This is such a new experience for me and other than this site there is no-one else to compare with or talk to. If I had breast cancer or one of the more common ones others would understand. If I had scars from operations they would sympathise, but at the moment other than some weight loss and a painful limp as I recover from a fractured spine, there is little to remind people that I can't deal with stuff like I used to. I still have a son at home who thinks I am infallible and can come home and cook every night. My garden and lawns look terrible. You say Maureen that you didn't know about the pain to come, which I also found, and I didn't even know until I read the comments on this site that I will get tumours!! I sort of get now why my specialist was so sympathetic when he tod me what I had, and at the moment with the fewer symptoms I have perhaps ignorance is bliss. However I am one of those people who need to know what's coming in order to plan ahead. The big questions like how long can I live teaching in a country town with no family in sight and on my own? Should I sell up and move to live near my sister and buy a small house - or should I move into a retirement/nursing home instead? I don't want to be a burden but I don't want to be on my own either. Well I guess I just sit back and hang on for the ride! Hope the chemo works for you Maureen. I have read some positive stories about how it has given some people a break from the disease for a while to be normal for a while.
Chalky, I
again, I get where you are coming from, especially the nursing home versas the sell up bit. I am very lucky to have 4 daughters, they are there for support but in saying that I feel very much like a burden to them, its seems to be going on for so long now. I was diagnosed with smouldering 5 years ago and just tested every 3 months, bloods kept changing, were always up and down but refused chemo because like an idiot I thought, this is not happening to me, I will beat this, which I have up to date but as you know here I am getting ready for chemo. I was told right from the start that this would happen and was prepared to deal with it when it happened, if it had of been made clearer about the pain, maybe would have started sooner but in hindsight doesnt really matter now, hey? Guess we just continue our battle and keep smiling through the pain, not much other choice, thanks for your concern and encouragement for the chemo. I am scared sh........! I hated most of all when each haemo told me its a relatively easy chemo to do and I won't lose my hair. Who cares!!!!!!! Not really a priority when you feel like this, in fact one less burden when you shower hey lmao. In saying that the radiation was a breeze, can only hope that the chemo will be the same but very much doubt it! I have had a crap time after being diagnosed with MM, a year later was lucky enough to get bowel cancer as well. That was also fun, now its has spread to my liver and I sort of feel like I may have been put in the too hard basket or at least the too many, surely!!!!!!!!!!!! lol Good luck and keep in touch. Maureen
Oh! I sympathise with the perfume bit! Or the aftershave that men wear, usually real estate agents or car salesman, phewwww, can smell them in my nose for two hours later! Funny how we all react differently, I cannot stand the smell of Omo washing powder. And I have found the best soap is the QV body wash, no smell and the after shower cream is great too for dry skin. No, I am not an Avon respresentative or anything lmao. Just find it helps me. And what about the hearing, anybody noticed how loud people talk nowadays or is that just my radiation treatment lol
