Sorry but I need a rant and writing things down is so therapuetic!
I know it’s a normal thing to ask but I’m fed up with people asking how I am and me not really being able to say exactly what I want. If I actually told people all the things that are wrong and which are side effects of chemotherapy and not just general things I want to moan about, they wouldn’t believe me. (unless of course they have been through it themselves)
What I really want to say when I get the “Well you look well” comment is…
“Well I may look well thanks to the wonder of modern makeup but actually, my feet and hands are sore, I have constipation and what feels like a razor blade cork up my b**. My legs sometimes ache so much I can hardly walk as the chemo destroys my bone marrow. I can’t taste any of my food, I have a permanent dry mouth and sore gums. I’m permanently tired and thanks to losing one breast and my hair and gaining over 2 stone in the last 6 months I have serious self esteem issues now. But thanks for the compliment!”
Now of course I would never dream of venting this on any poor unsuspecting friends, thats why I’m doing it here. I haven’t even told my nearest and dearest the full extent of everything I’m going through because I don’t think most people really want to know. And I know I’m not the first to rant about these things and I certainly won’t be the last but I feel so much better now.
Thanks for listening!
Debs
X
It is amazing how people feel obigd to tell you how great you look when you are on chemo. Not sure why they do that - maybe cos they expect us to be like the little girl in the cancer ad, pasty and on a drip…Rant away though! I think that it is just another one of those things we have to bear for the sake of our friends and families…It does get a bit better when you get your hair back and it’s amazing how quickly it comes through when you finish chemo. I’m two years past chemo now, almost three from diagnosis and physically fine with hair etc back to normal. I’m fatter than I was and still under reconstruction but I must look normal enough cos everyone has stopped with the “Oooh, don’t you look well”
Hang on in there and rant away!
xx
I’m with you, rant away cos we protect our nearest and dearest cos thats what is expected of us, however we have this site to support us thankyou all for being out there. Chris
People who ask are often quite happy to hear the truth - and so I give it to them (OK - edited highlights!), but I really do feel that the more we explain what is going on and how we really feel, the more cancer becomes more understood.
I had to earn some money (am sole wage earner and freelance, so no income), and went to a meeting in a swanky city office today. It was sweltering, but a suit is compulsory so went with no hair or hat. I was worried that I looked a bit shocking - and as they were new clients no one had met me before. Everyone was lovely and actually I realised that so many other people have so much going on in their lives that they never mention, and once I had explained the lack of hair, they opened up to me at the coffee break. Out of 10 people, one lost a 6 week old baby last year, one’s son had just finished chemo (aged 4), one’s wife was very ill - and none of their colleagues knew any of this as we all keep things quiet (they were all men)
So, if someone comments or asks I really think it is fine to say how you feel as one day, they will know they can say the truth to you. Also, with 1 in 3 getting cancer, they are unlikely to get through their lives without someone close getting it, and maybe having some idea might help.
Buzzy, I know what you mean. People expect you to be a pallid walking skeleton with hollow eyes, because they have images of someone in the terminal stages. I’ve seen people at that stage, come to that.
I have pointed out to people that I had to stay home on the really bad days (dizzy spells), or I joked about the amount of make up I was wearing and what I looked like first thing in the morning. If they commented on my ‘good colour’ I told them plainly that it was the steroids. What about working up a line about one or two of the symptoms? Not being able to taste your food but being bloated up by the steroids is something people might understand, or the pains, if you compare it to flu. You could tell them that one of the difficulties of breast cancer, even when it’s caught in time, is that you started out as a healthy person and the treatment makes you ill.
Isn’t it crazy that you can feel absolutely rotten and still be made to feel almost guilty for not feeling or at least looking worse?
But you’re right, a good moan and a good rant are very therapeutic.
Rant away Buzzy - we often do! I agree with Annie though - many of my friends get “the truth” because they really care… to people that don’t want the real answer I just say “this week’s better than last” or something bland… and smile while they say “get better soon” - nay idea… none at all… not their fault necessarily… I knew chemo was hard, I didn’t know it was THIS hard before I had it though…how would they? Yet, some manage to walk alongside, thankfully… Jane
And isn’t this the second time in not very long that you’ve lost your hair through chemo? That must be an even bigger smack in the chops than first time round. When people ask, I’m afraid they get the truth from me (on timescales at least), that I have another 5 years of treatment to go if it doesn’t come back in the meantime. A bit shocking for them, I know, but it gets the truth out there. And I usually follow it with encouragement to check themselves (and their other halves).
I won’t say “chin up” or anything like that, you feel free to let it all out on here, you know you’re talking to people who understand where you’re coming from.
you know buzzy wot you have said would be word for word for me cos that how i feel but i too dont say a thing just a thanks infact i did try to say something to my oh only this morning and ended up in tears cos i couldnt get it across he just tells me to stop feeling sorry for myself which is a joke if only he knew wot it was like
you keep ranting i may just have to pinch your words and email them to him then he may just understand wot im feeling
maz xxx
Thanks everyone. I knew I wouldn’t be the only one feeling like that. I was having a particularly down day yesterday. I did end up telling one of my best friends about how I felt and my son heard it all as well so now he knows too.
You’re right Choccie it is second time round for me and it was more stressful losing my hair this time as it was just growing back lovely. This also gives rise to the “Well at least you know it grows back quickly” comments. As if knowing that makes it any easier to lose! Oh don’t get me started again!
I’m finding TAX much harder than FEC and feeling guilty that I’m having so much more time off work. I know that is silly but before cancer I had hardly had any time off sick in years. I’m really trying hard to care less about what other people think and more about what’s good for me.
Anyway, today is a better day than yesterday. Just. Onwards and upwards.
Debs
xx
Yep - think we put on such a “brave face” that others just don’t know the reality - last weekend busy with siblings sprucing up parent home for sale - I did all the cooking and even painted a wardrobe - lost count how many cups of tea I made for everyone that day and at the end of the day my energetic sister (does triathlons!) just put the mugs in the sink leaving them for me to find and wash… at least my brother told me to have a rest in the afternoon and this coveyed a sensitive understanding of what chemo does to us.
rant over!!!
One question - hair is growing back after second time of losing it but it’s mostly on the back of my head with hardly any on the front (which is what I see the most…) Is this “normal”?
Personally, I think you should tell the truth. When people tell you how well you look, and you feel differently, why not tell them. I think some people deliver these platitudes for good reasons(they think a white lie will give us comfort), but others deliver platitudes as a way of avoiding involvement (they think if they can avoid discussing how you feel, they won’t have to make any emotional effort).
I know we all worry about what others think of us, but if as human beings we cannot empathise or deal with each other on an emotional level, why should we bother.