shrinkage

[shoot]

I am very sorry to hear that your treatment isnt working as well as hoped. I can totally understand the emotional roller coaster you are riding today. I was diagnosed with lymphoma when I was 21,that was 20 years ago. Like you I went through the chemo,mine was AVBD:Adriamycin(a really pretty shade of red that burned like hell when it was pumping in),Velban(derived from the periwinkle flower and a compound that my father actually worked on at Lillys,he told me that when it was his turn to drive me to treatment),Bleomycin(clear solution didnt hurt anymore than the saline)and Dacarbazine((milky white and freezing cold would bring on chills and a blanket from the nurse). Its a very rough road you are on and I wouldnt wish it on my worst enemy. I remember my first treatment I came out and felt fine even stopped at a hotdog cart and had a dog,a couple hours later and I was on the floor by the toilet generally for 12-14 hours. I guess by my third treatment I was gagging and nauseous halfway through the treatment. Towards the end of the regiment just the smell of rubbing alchohol would make me sweat and gag. Bald, not a hair left on my body. Weight loss 25 pounds from a slim 180 that to this very day I have yet to see again. The hair grows back soft like a babys hair its really nice and will start returning right about the time you lose all of your hair,its very fine so you may not even notice it at first but it will grow back while you are still taking treatments. I only took the Ativan one time and I thought it made me sicker sure as hell didnt help. You need to hook up some good weed its the only thing that ever made me feel better. Try some maybe 36 hours after treatment when your head is starting to clear a bit but you feel like death warmed over. You live in Ohio and have maybe the most liberal pot laws in the lower 48,up to 96 grams is equivalent to a traffic ticket. I always had a big fat bottle of Percocet and if you dont have the same or eqivalent you need a new doctor,life is sucking bad enough no sense in you enduring unnecessary pain. If the chemo does fail you there are many other options for treatment that you can seek out. I know how hard it is to eat,nothing ever sounds good,nothing tastes good but you really have to force yourself to eat. If nothing else eat junk,ice cream pie cake cookies whatever it is its better than nothing. Its so awful I feel so bad for you,sometimes its like every inch of you hurts,brushing your teeth and any sort of bold taste can be a very painful experience,use that sensodyne toothpaste if you dont allready,it helps alot. I know that strong smells would really bother me with perfume being the worst along with strong smelling food. Baby soap and baby shampoo have very mild smells you might try some of those.Basically they are pumping drano mixed with clorox into your veins every week or so and you have to ride it out. Its so hard to go anywhere because you feel like crap almost all the time,you may feel good for an hour or two and get ready to go out and lay on the bed for a second then its tomorrow. Its a very strange existence the slow poisoning. I mean here this may be the end of your life and you want to do so many things to try and live it but your are being poisoned and can hardly pull yourself off the floor or the bed most days. I wish I could do more to help you feel better,just dont lose hope and give up,thats just what it wants. You need not look to others who have it worse to find comfort,think of how many have lived much shorter lives even if they live one day less than you,you have had a better life. Try and do things that create wonderful memories new things that you will never forget. If when we die we can take anything with us the only things they could possibly be are memories.

[Aliantha]

I'm not sure if it's for me to say this, but that post was one of the best I've ever seen on this site shoot.

Thankyou for sharing.

[Trilby]

that was an excellent post----you said it all, shoot.

thanks.

[classicman]

wow - just wow - awesome...

[monster]

Originally Posted by shoot

If when we die we can take anything with us the only things they could possibly be are memories.

:tears:


Our school lost a mom to cancer yesterday. This helped, thanks.

[monster]

Bri, I feel so helpless. Just coming here to tell us you're having a really shitty time requires a strength I'm not sure I possess. I can't even begin to imagine how much more strength it needs to cope with all you are dealing with. You rock and you are winning and you will continue to win every moment you fight and you ask for help to fight. We may not be able to provide the help you need, but please don't stop asking. I'm sure this makes no sense at all, but given all the other bullshit () in this thread, I reckon I can get away with it. I just wanted to let you know ....well..... something, anything. That I'm here and I'm thinking of you and if thoughts were any use that cancer would be dead meat on a dull stick.

[ZenGum]

Great post, Shoot.
I've been wanting to post here but I was at a total loss for what to say. So can I just add ... "what he said!"
Maybe you can contact some other survivors in your local area that you can meet in person. You're walking through a really horrible tunnel, maybe the best thing is to hear a voice from up ahead - from someone who has been through this and who can reassure you that the tunnel really does have a way through and out into the light (and may have useful practical advice too).
All I can offer is: be strong, keep visualizing your future healed life.

[shoot]

Thank you guys for the comments,Ive been thinking of her and this thread all day. Its a really crappy hand of cards shes been dealt. I just wanted her to feel no quite so alone. Its a very personal experience and quite difficult to share with others when you are going through it. I hadnt even thought to suggest she contact a support group of some sort. When I was in treatment I met 2 other people via my Dr. One was a girl who was only a couple of years older than me and was in her second round of chemo or had just finished. It was really great being able to talk to her when she allready knew all the angles,she even went to a treatment with me. The second person was a man in his early fourties who had taken chemo in his early 20s for it and had a recurrence right around 20 years later. One of the drawbacks to chemo is that it makes you more susceptible to many different things later in life,so Ive always had that to look forward too. No regrets though if I go tomorrow Ill be very happy with my life and very grateful for the extra time given me. I was also told that the chemo would make me sterile,I wound up having twin boys on down the road a few years,they are almost 15 now so the doctors dont have all the right answers. Not being able to eat is what does a lot of people in I think. The chemo targets areas of rapidly dividing cells which describes a lotof different cancers. Unfortunately this also describes cells in your mouth,stomach,hair follicles. So you go bald,all your hair eyebrows eyelashes you name it. You throw up then feel like crap for days on end and just when you start feeling a bit better,perking up some...its time for another treatment. Your mouth will hurt so bad sometimes even the saliva makes it hurt,tastes make your eyes water from the pain especially the first bite. Your friends and family sort of shun you. They dont know what to say,you know they feel bad but uncomfortable I guess it seems.Sorry to run on.

[Trilby]

shoot, thanks for putting words together so nicely and describing what is going on with me. I"ve never been very good telling my side of things--i just get all frustrated and figure people should just KNOW--ha! I'm delusional, I know that! Your posts have kept me company these past two days and i thank you and alll the other dwellars who have posted or just had a thought of me at some point. I am going to go see a psychologist who works with cancer pts. and see what we can do about gettting me a new oncologist. I HATE my oncologist. We have a failure to communicate....well, it's not so much that it's that he can't BELIEVE i'm in pain and miserable and I can't believe he can't believe it! He doesn't see what the fuss is all about.

Good lord,the skin on my hands looks like gnarled wood. oh, this stuff ages you.

[Sundae]

Thank you shoot, for giving us a hand with what this is physically doing to Bri.
And the mental effects - I for one forget that the brain is just an organ, susceptible to side effects and poisoning, because it contains my "me-ness" so I think everything it tells me is valid.

(Just one polite request? Could you break your posts up a little - they are so important and can be a little hard to read on a small screen)

Bri, do you have any cancer societies or charities?
In the UK we have Macmillan, who cover everything from specialist nursing to helping you deal with finances. I've linked their site just because they have some useful cancer info.

Mum's friend used them as a shoulder to cry on when her husband had cancer. Literally, the woman would turn up, Jean would make them both tea, then she would cry for practically the whole appointment. She felt miles better afterwards. Her husband made a full recovery btw, he's run the London Marathon for Macmillan.

I know you don't feel like reaching out, but if it's a specialist cancer charity they will at least understand.

Anyway, you have us and we only see the important part - words on screen as a direct insight into your brain. And I really appreciate you coming here, even when you're being dragged through medical hell, to give us news of how you are. I wish I was closer. I'd do what my friend did when I had depression - put a note through your door to say I was going to the pub and would be back in 30 minutes, and if you didn't answer the door then I was calling your Mum. It worked - she even got me out of the flat.

Keep going C, lots of love.

[Trilby]

hey sg---i wish you could pop by, too coz you're not going to the pub without me!

there are groups here---all sorts of Cancer groups. I"m hooking up with one called PALS (breast ca chickies) and they are paying for me to see this psych so i can figure out if this is 'normal' sadness/depression or abnormal or whatever. they do meet once a month,too, for a group chat/share time and ususally have a guest speaker, too. they seem really nice. I just am feeling so---unbeautiful. I am afraid I won't get resconstructive surgery....my oncologist is unsympathetic....oh, just miles of junk. I cry every single day and i feel very very lonely. the loneliness is the worst of it.

[Sundae]

You can always get me here darlin'

If I could change the world I would, and I'd be two doors down from you and you'd send me away with a flea in my ear for bothering you all the bleedin time with my Baileys flavoured ice cream and just one mouthful of my roast veggies and here are pictures of my cats, why don't you come and see them etc etc

Or ideally you'd be here in the UK and I'd drag you out. To a quiz night. And I mean DRAG. So you could prove your mind is still strong and damn your sick body.

But I can't, and it hurts me. And I know you are living in total fuck-uppery, so I am not for a second trying to trump that. Well, there you go. After all our conversations about similar experiences at least you know you win now.

I think about you every day. PM me your address again - I can't send you a cure, or anything with real value, but if I can send you some words it will help me. Selfish to the end

[Trilby]

Hi, ya'll.

Just finished treatment number four (and my last treatment with taxotere---the drug made from the pine needles of the European Yew tree) and three weeks from today (or, actually, from yesterday) I start four treatments with this stuff called Adriamycin--a different sort of chemo drug made from--well, I'm not sure. I still get the neulasta shot after the chemo and that is the thing that causes the pain. the chemo just makes me tired but as the weeks have gone on the symptoms have become less severe. The worst thing now is the menopause symptoms. Menopause can make you nuts and I am pretty close to nuts anyway. It has the strang effect of making me cry everyday for very little--or no--reason. I look at the street or the houses or the christmas lights and i think how sad they are and i start to cry. I have spoken to other women and they have said similar things about meno symptoms---one woman said she would just go into her room every day for an hour and just cry and then try to get on with her day. Sometimes it comes out of nowhere and is very embarrassing to start crying in line at the market.

This is the first year I have no decorated for christmas---i see no point. The boys never cared anyway--never said, "oh, nice tree, mom" or helped with any of it so I don't feel too bad about that except that it points to some real lack of spirit on my part. I never really cared if the boys wanted the tree and all the trimings, I did it for me. Now, I don't even care.

I am trying to pay my shoebox full of medical bills, and to be honest, most billing agencies really are bending over backwards to help me and I am grateful for that. Very grateful.

Things that concern me are the little things: I've stopped wearing earrings, painting on my eyebrows, cleaning the house, cooking. sounds stupid about the earrings but I've worn them all my life, everydday, even if i was just hanging about the house or running to Mcdonalds or watching Oprah. Now i'm thinking of giving them all away. And,no, this is no pathetic cry for help, pre-suicide planning, etc. it's just how this has effected me. I have never been strong---well, i USED to be a strong person, back until I was about 30. Now I'm a slow train wreck.

I don't want sympathy (so, if you don't want sympathy, why write this, right?) I don't know. I just want SOMEONE to know what I'm feeling. and yes, i've been to my psych three times in the past three months with three med adjustments, I've been to my primary, my surgeon, my oncol and talked to the cancer research nurse. I'm doing everything they are telling me to do. mostly, I look out my living room window, I miss school, I miss the work. I miss you guys--a LOT. I'm usually too tired to fight this damn computer to even write (though I'm certainly long winded tonight, eh?) I don't feel, look or think like myself (something called 'chemo brain').

get your mammograms, get your tests, go see your doctor. NO inconvenience is worth the total clusterf_ck of cancer---even the 'easy' cancer that I have. I would be willing to have a worse cancer if I had a better brain---- one that wasn't so committed to being my enemy, one that didn't hate me quite so much.

god bless you for listening to what must sound like the worst kind of self-pitying treacle this side of Danielle Steele.

kiss to you-----claudette

[Trilby]

Ps--the computer thing. I got a new computer and i really hate the keyboard. it feels so funny to me and even the type looks different. I had a pro set it up for me (yes, I am that computer-unsavvy) and he couldn't get the speakers to work and it's just messed up even though i paid 106 dollars for him to do this for me. I've used this guy before ("HOme Computer Helpers) and he seems really decent enough, I just don't know why it's not as good as the last one---i went from a crappy emachine to a HP vista home premium but to tell you the truth, I was happier with the emachine. do you guys have any advice? I sure hate to spend another 106 dollars. can I just switch the keyboard back and do you have any ideas why my speakers won't work now?

[monster]

Call him back to fix the damn speakers -he hasn't done the job you paid him for.


...then see if he's switch the keyboards over as a compensation job.