To all you ladies worried about the chemo, don’t! I had my first session last Monday and it wasn’t bad at all. Had a banging headache that night and thought heart was going to beat its own way out of my chest. But - reading between the lines of the side effects - I’m quite a chubster, so had to have more of the drug than a slimmer person which thus affects the way the heart beats for a while. (Wish they told you these things before they actually happen.) Anyway, it all settled down overnight and have been ok all week - so I’m sure you’ll all be just fine. As for loss of appetite - I wished! I too have had to pack up work for the foreseeable future and food and tv have taken on a whole new meaning to me. As soon as this weather warms up I must start going for walks - feel like I’m vegetating and just can’t put on any more weight - and besides my wig won’t fit me if head swells like waist is! Good luck - you’ll all cope with it wonderfully - there really is no need to panic. x Jackie x
Hi all - this must be one of the busiest threads in the forum at the moment!
Really want to send all my best wishes to Bikerbabe, you have been through so much and I can totally understand your apprehension at starting chemo. I’ve had two different lots of chemo, found one a breeze and the other less so, but still doable, but as everyone says, we are all different and you just have to wait and see - and Jackie seems to be doing really well. The great thing about my experience with chemo is that the staff are all brilliant, very caring and concerned, and they really have seen it all before, so any worries or concerns you may have, they can give lots of good advice.
I’m managing to steer clear of most of the daytime tv (don’t want to get hooked), but do have quite a thing about grand designs and Kevin McCloud!
And for all of us who have had insensitive comments aimed our way, here is a fantastic poem by Susan Frisius. I’ve posted it once before, but figured most of you would not have seen it - apologies that it is quite long!
Julie
x
I Could Get Hit by a Bus Too
by Susan Frisius
“You never know when you’re going to die, after all, I could get hit by a bus."
Since I’ve never known anyone who has been hit by a bus, I don’t understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.
“You’re lucky you have a treatable disease.”
Don’t get me wrong. I’m thankful I wasn’t told, “There’s nothing we can do,” but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn’t exactly make me feel lucky.
“You’ll be fine because you have a great attitude.”
If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?
“Don’t worry, if your time’s not up, it’s not up.”
If that’s true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, “if my time’s up,” treatments won’t help.
“I’ve read that anger and stress lead to cancer.”
Great! Now I caused my own cancer.
“You should simplify your life.”
It’s pretty simple now, all I seem to do is go to medical appointments.
“I’ve read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn’t keep you from getting cancer. That’s why I watch everything I eat.”
The person who tells me this knows I only eat natural foods, cook everything from scratch, don’t eat junk foods and rarely eat meat. “You eat white pasta,” she says when she sees my puzzled look. Of course, she eats white pasta too, but calls the flour “semolina.” Does she really think if I had eaten pasta with “semolina” on the label I wouldn’t now have cancer?
One person says, “If you really want to live, you will. Just never give up. When people give up, they die.”
If I were hit and killed by a bus would she think I died because I gave up?
Another person tells me to visualize the cancer shrinking. She says, “If you really work at it, you can eliminate it.”
Most conversations end with “call if you need anything.” I don’t have the energy to call anyone - I can hardly feed myself and get to my medical appointments.
Why do intelligent and sensitive people who care about me say such things? Can they really believe I’m responsible both for my cancer and the outcome of my treatments?
I think these people want to believe cancers are caused by a person’s poor emotional state or diet. This lets them think they won’t get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they’re afraid they’ll find out their attitudes and diets are no better than mine. So I hear, “How can you be so cheerful?” and “All that yogurt can’t be good for you,” and “Put your daughters in foster care, they’re too stressful for you.”
I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I’m sure they were sincere when they said, “I’d like to have you over for dinner sometime, but I know everything makes you sick,” or “It’s good to see you out grocery shopping, I was worried because I hadn’t seen you for a while.”
I’m sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn’t visit or call “so I could rest.” I think they just didn’t know what to do or say.
So what would help me while I’m being treated for cancer?
Drop in or call. The only way you’ll know what I need is if you keep in touch. Remember, if I’m out in the community, I’m well enough to be out. It’s when you don’t see me that I need your support.
Don’t wait for me or my immediate family to ask you for help. It takes too much energy and I don’t like admitting I can no longer cope with everyday living. When you want to help, don’t ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.
Don’t minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I’ve held important has been touched by it - my ability to raise my children, my work, my independence, my social life.
Don’t let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it’s not my whole existence and I am able to converse on other subjects.
Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends’ support now more than they ever did.
If I let you know your company is too much for me at the time, come back. If I don’t answer the phone, call again. I need to know I can count on you because I’m temporarily unable to count on myself.
If you’re feeling helpless because someone you know has cancer, don’t. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.
Both of you will feel better when you take action.
Hi Julie,
and thanks for that! After reading the poem I think I can go to my bed and sleep! Night all. Lyn xx
Aw thanks for ur support Jackie - if it’s anything like the surgery, the waiting and wondering part was definately the worse bit of that and ultimately it was fine and not half as bad as I imagined.
My hubby keeps suggesting we go for a walk so I can get some fresh air, but I’m not a walky person, never have been. I’ve done cycling and swimming and even had a go at jogging in the past to keep fit but I find walking dead boring - it’s just so …slow!!!
Guess the more vigorous exercises will have to go on hold for a while (not done any for ages anyway) and will have to make the effort to go for a blimmin walk … zzzzzz!
Did u have any probs with constipation Jackie? Sorry to be blunt but had a bit of a trauma in that department, post op so would rather be prepared !!
Thanks again Jackie and love to everyone else
Sue x
Damn Julie, that hit the spot! Every word is so true. I am sick to death of being surrounded by these so-called ‘experts’ and have fallen out (forever, I think) with a couple of people that I thought were good friends - the biggest disappointment being my one and only sister. Who - despite living only 40 miles away, and being Iabsolutely loaded told me that she couldn’t afford the £28 rail fare (she’d looked it up on the internet) whilst I was in hospital for 12 days recovering from a mastectomy.Strangers on this website have given me more kind words. Sod it, now I can’t see to type anymore - having one of those moments. x Jackie x
U have ur moment Jackie - it’ll do u good chuck.
Hope you feel better after it - big hug x
Sue x
Ok, moment over! Back to normal - sleep always straightens out the wobblies (and your hug!). In answer to your poo query, Sue, I did get bunged up for a few days, best tip … 5/6 fat, dried apricots from any supermarket pack (I can vouch for Tesco’s), with a hot drink … and you’ll find that the eagle will soon land! x Jackie x
Hi,Sue,Jackie and bikerbabe and everyone else!
Hope your all not feeling to under the weather today? I personally feel as sick as a pig, just can’t get rid of that feeling even though i’m all ‘pilled’ up.
Sue, prunes in the self sealed foild bags work wonders! I eat a whole bag one evening when we were camping in Cornwall last year, needless to say,i nearly broke my neck and the tent trying to get out!!!
Jackie, even those closest to us can be sooooo damn insensitive.I’m sorry that your sister hasn’t had the thought to come and visit you,it almost seems unbelievable that she could be that way.
My mum is the same - we haven’t spoken at all (she’s made no contact whatsoever with her only grandchild either) for 2 years - she doesn’t send birthday cards or Christmas cards to any of us- not even a card when my Grandad (My dad’s dad!!!) died nor did she come to the funeral ’ for fear of causing a scene’ - what kind of person does she think i am?
Anyway, we just have to accept sometimes people don’t always do what we expect, and were lucky we have wonderful friends on sites like this! Her loss i say!
Rant over, ringing the white coats now for a further sicknote,
Love to all
Lou xxxx
So glad you feel better Jackie after ur wobble - I know exactly how u feel, it’s weird how these wobbles just grab you without any warning, but strangely you feel better after them!
Thanku so much for the poo tip - I like dried apricots so it won’t be a problem … I want to stay away from taking unnecessary drugs if I can help it - think we have enough drugs to contend with! (I’m all for eagles landing on a very regular basis 
So sorry too that ur don’t seem to be getting the support u need from ur sister - people can be so selfish at times like this and the people you’d bet ur bottom dollar u could rely on, let u down … and yet other people you’ve not seen for ages turn out to be marvellous! We’ll support u and try to fill the gap, as much as we can chuck - another big hug x
Big hugs to everyone else today too
Sue x
Hi Lou - Gawd sorry ur feeling so sick, there’s nothing worse than that feeling - that’s the bit I’m dreading when I start! Does it help to eat something? - think I remember you saying you need to eat to take the meds. Also I remember quite a few ladies recommending anthing containing ginger (ginger biscuits, pieces of ginger etc) to settle the ole tum … maybe worth a try?
You made me laugh with ur prune story! I took prunes into hosp but they didn’t seem to work maybe I didn’t eat enought of them. I think it had something to do with the privacy thing, I’m quite choosy about when and where I go to perform the necessary and with nurses bobbing in and out every 2 mins, this wasn’t conducive to my bowels being in a relaxed state of mind so to speak. (Only on this site cud u discuss poo to this extent
Keep ur pecker up Lou - hug to u x
Sue x
Hi, I am starting chemo this Wednesday the 14th January, very apprehensive. I had a mastectomy and ld recon on the 15th December so am now 4 weeks post op. I too have a sister who hasn’t been to see me or even telephoned, my other sister also doesn’t call, only see her if I bump in to her, or I call her to tell her where my treatment is up to. Families eh, at least we get to choose our friends. Not sure how I will be once treatment starts, but I have been offered the cold cap, has anybody used this and did it work for you. I would be grateful for any advice or to hear your experiences. Thanks Jules x
Hi All, There’s been some great posts, the poem was so apt. And families, who’d have 'em! No, most of my family are great and if I need them they’re there, no matter what. It’s very hurtful when some family members turn their back as when you’re feeling so vulnerable, it’s the last thing you need. Anyhow, we’re all here for each other on this site and Sue, yes I totally love that we can discuss poo like that!!! I personally fine a glass of prune juice in the morning, bran flakes, any sort of fruit - fried or fresh, all helps things along. There’s one particular anti-sickness med that causes constipation but because it’s so effective, it’s worth it. Lou, I’m sorry you feel so sick still. I find ginger ale helps, not sure why but it does. and yes, I tend to try and put something in my stomach and that can take the edge off a bit. I feel better today, got up, dressed, did ironing then walked up the shops. It was an effort but I didn’t want to have another ‘do nothing feel c**p’ day. My hair is all but gone but it didn’t make me wince when I looked in the mirror this morning, I guess it’s taken time to accept it but now I do I can move on. Wore a lovely green hat out and my daughter (who would never lie to me?!) said I looked lovely which made me feel better. But my head is soooooo cold! Jules, lots of luck for Wednesday, you’ll be fine. I didn’t try the cold cap but have heard of being helping some people, anything’s worth a go. Also, since using this site, I’ve found that people can have very different experiences while having the same/similar treatment so I’d go for it and see what happens. Jackie, take care and know that we all have a wobble now and again. Once it’s done, you somehow feel a bit stronger and the lovely ladies on this site certainly do help. Well, OH has just taken mour mad dog to the park so I think it’s time for a catnap. Thank goodness for this site, it’s helping me keep sane, and that’s saying something!
Love and loads of hugs, Pat x
Hi all! Well thought I would come home today knowing when everything was kicking off…but…onc has given me a choice, and quite frankly I would rather be told what’s best for me than have to work it out for myself…after all they are the experts! Anyway after that little rant-turns out that the one factor that goes against me is the fact it was a grade 3-everything else was in my favour so from an 83% chance of nonrecurrence after 10 years with no treatment other than rads, with tamoxifen it increases by 4% and another 4% with chemo-I am apparently at the lower end for chemo being beneficial. So I have to decide a) do I want to put myself through the discomfort etc of chemo for a slightly better prognosis or b)give it a body swerve and live with the doubt in the back of my mind that there may have been stray cells…aaaaaarrrrgggghhhh!
OH is a gambler and he thinks I have pretty good odds anyway, but I always err on the side of caution, so I have a bit of a dilemma!
Any thoughts girls would be good?
Lyn xx
Bugger, just typed bundles and lost the lot. Try again. Thanks for all your support ladies. You’re so right about being able to pick our friends but not our family. Lots of other stuff has gone on with her over the years, but I’ll never forgive her for the non-visits and other recent episodes. Even her two lovely sons have gone on the warpath with her, but - as you say - her loss. And I have my 2 lovely girls, what more could I ask for. Lyn, personally I couldn’t live with myself without having tried everything to get rid of this crap disease, couldn’t bear to be in that situation where the sentences start “if only I’d …”, but it’s a personal thing. Lou, we used to go camping every weekend when the girls were little, and I can picture the ‘prune scene’ all too well - lol! We used to have an empty (to start with!) jellied eel bowl - pilfered from the fish man - which served a use as an emergency night-time toilet. Our friends always used to camp right next to us and one morning - knowing that I have the weakest stomach in the world - topped it up with a load of uneaten sausages. I’ll never forget gagging and whooping my way across that camping field to try and empty it down the loo - even though I knew they were only sausages! x Jackie x
hi Lyn, can you explain about the numbers you mention as I haven’t been told any of that and am worried now as I too am grade 3 but they haven’t said what stage or mentioned odds or anything. To be fair, I haven’t asked… Is the 4% on top of the 83% if you have chemo and tamoxifen? I totally agree with you about being given a choice - they’re the experts and surely they should be able to say what is best, what they recommend. If you go ahead with chemo, when do you start? Pat x
Hi Pat,
Apparently they put all the info they have about you into a computer programme which then throws out these percentages-the 83% is my best prognosis with no chemo or tamoxifen-t on it’s own as it inhibits oestrogen increases my prog to nearly 87% and adding chemo into equation increases it again to nearly 91%, so the chemo with all it’s SE only slightly increases my 10 year prognosis. However having thought about it , I will probs go ahead as I don’t think I could live with the nagging doubt that there were still nasty little cells circulating somewhere in my body, and even if it did recur later at least I would have given it my best shot! I have to contact my onc in the next few days and if I agree it will start in 10 days or so after I have a heart scan.
Met my older daughter for lunch and without telling her how I felt her immediate reaction was “you have to have it mum!”
So guess it will be another sleepless night tonight…!
hugz Lyn xx
Hi Jules1958, I’m having my first chemo treatment on wednesday the 15th January too. Where will you be going for your chemo. I’m going to Broomfield Hospital in Chelmsford?
Bikerbabe
xx
Hi everyone
Lyn - If I had a choice like yours, I would definatley go ahead and have the chemo. Like you said you can then be safe in the knowledge that you did everything you possibly could, should it re-occur (hopefully it doesn’t). The very best of luck to you no matter what you decide chuck x
You made me laugh Jackie with your sausage story!!! I remember a few years ago, a crowd of us went to a motorbike rally and camped for the week-end. (I have a bit of a phobia about where I go for a poo - sorry Pat on this again). Anyway about 4 of us girls went to one of the many portaloos dotted around and knowing my phobia the other 3 girls obligingly stood guard whilst I had a number 2. When I emerged I shouted QUICK RUN !!! as a joke and they all ran off in different directions screeching!!! They thought something really horrendous had happened to me in the loo, well I was helpless for hours afterwards. Sorry ladies, I have a very lavatorial sense of humour!
Here here Pat - thank goodness for this site !!
Hope everyone else is feeling ok, keep strong friends.
Love
Sue x
Ok peoples - listen up! Forget everything I said about dried apricots - take them at your peril. Because after being clogged up for most of my 1st week of chemo, I now have eagles nesting on every sodding roof tile of my house! Sorry to end the night on this note, but be warned! lol. x Jackie x
Does this mean you’ve gone from one extreme to another then Jackie? If so, how many did u take?
Flippin 'eck, don’t know which is worse … but … having carried out extensive studies on this my favourite subject I think I’d rather have too much movement than none at all !!! (Had a bit of a trauma in this department post op)
Happy Tuesday chums !
Take care everyone
Sue x