I have thought long and hard about adding to this thread and the following are my thoughts.
I was diagnosed in July 07, had chemo first, then mx with full anc, then rads. I have since developed osteoporosis from the chemo and lymphoedema from the surgery and am retired from work at the grand old age of 44. I have bone mets in spine and ribs and have the joys of a scan on Monday following suspected possible spread in June’s scan and results on the 17th.
I think I can understand where you are coming from Pash in so far as I found the mx itself the ‘easiest’ part of treatment and just wanted rid of the tumours. The subsequent scar has not caused me any problems in terms of looking at it etc. I do agree with an earlier poster in that perhaps the title of the thread should have been phrased differently.
I tried to go back to work last year after 12 months off but only lasted 2 half days a week for 4 weeks and felt such a failure even though I have approached the whole bc thing, including secondaries, with a ‘positive’ (hate that word) attitude. This last summer I have had a lot of family illness and bereavement - I even seemed to be the healthiest person!! - and was in a dark place. Fortunately I now seem to have come through that but it was horrible to be there such a long time after diagnosis and end of major treatment. My onc has always said to me that in many ways it can be the after effects of everything that hit people harder, especially when you feel and look better than you did when on chemo etc,etc, and that this is a much underestimated and misunderstood part of the whole cancer thing (not just bc).
I would say to anyone coming on here, please read postings carefully, don’t reply in haste and say something you may regret and most of all remember we all visit this forum because we have this horrid disease connecting us.I believe the purpose of this forum is after all to help and support others. Everyone has their own opinions with regard to how they approach bc and, like everything else in life, this is very much an individual thing.
I don’t think I’ve expressed myself very well but hope my musings come over a little bit in the way they were meant.
And I’ve always reminded myself there are people so much worse off and struggling far more than me (still have the odd moment of self-pity though!!)
I said i wouldn’t post on this thread again but having read both your post want to say whoop whoop you made me cry and feel like punching the air. thanks for both of you for posting such eliquent words
love rhi xx
everybody experiences things differently… i think some of the posts saying that the title just isnt true have to understand that for some people it is.
for example a lot of women have problems with losing their hair initially and shed a tear or two over losing it… i on the other hand didnt worry about out and me and my sis were in fits of hysterics getting it shaved off…
if somebody posted saying loosing your hair is the hardest part then i wouldnt post saying oh no its not, i would just say for me it wasnt the same experience…
and i would expect people to do the same in return if i posted that losing my hair wasnt an issue, i wouldnt appreciate somebody else posting that it was, but posting that their experience was a major issue is totally ok by me.
we are all very different and have different experiences and different ways of coping and dealing with diagnoses and treatment despite all having breast cancer.
i think everybody should be able to express their own opinions of their own personal experiences without being made to feel guilty including feelings conveying not having such a hard time as others have had.
Hi, i have happy positive times and then i have scared, not so positive times. Thats because i am coming to the end of chemo and will soon, when i have surgery, find out if it worked. I think everyone has the right to express them feelings, good or bad so long as they aint hurting anyone else. I think also sometimes when things are written down here it can be taken in the wrong context.
i have read all this thread…and havent really been on this site long…but i will now be leaving…pash,s original post was a pleasure to read.so positive, so happy, not insulting or demeaning anyone else …yet she was slagged off for it…???..if this is the sort of site where you can only come on and be negative and whinge and moan to gain friends then it sure aint for me…which is sad…because i joined this for positive support
Hi Scousser, It is a shame if you leave the site just because of this one thread. I agree that Pash’s positive post was a refreshing change. But you could avoid this thread completely and just log on to the ones that interest or appeal to you. I often read threads but don’t post on them but I do find the array of different ways of dealing with BC is a good thing. Think about it. Perhaps your posts have helped someone else on the forum and we need all different kinds of people to share their knowledge and experiences and feelings. Honestly when I found out I had secondaries I knew NOT ONE PERSON who was coping with it. Since being on here I have made new friends and contacts and their support is invaluable to me. Love Val X
hi scouser, i agree that pash’s original post was a pleaure to read and that she shouldnt be slated for what she writes. I would also like to add that i dont think people come on here to be negative and gain friends, i think if they appear negative, thats because they are feeling that way, through bad news or worries, and id say its reassurance they are wanting to gain.
Hi Scouser,
I understand how you feel but please dont leave the site as there is a lot of help and support to be gained from the forums.
I joined this site almost 3 yrs ago and have ofen felt a lone voice or mabe i just dont fit in.
Everyones situation is different and everyone is at different stages of DX and treatments so it is natural that tensions run high on the forums. However, haveing said that its not the different views that upset me it is the comments and the way they are expressed, ,to be told you have polorized views, in denial, or reminded that positivity wont save you, or that your somehow on another planet because at this moment in time you are coping , is intended to me to be patronizing and is unkind. Someone who posts in a good frame of mind can quickly be brought down and feel low again as has happened to me before after reading these kind of posts.
Yes ,we can choose to skip over posts and keep quiet, but WHY Should WE? ,Are we not allowed to talk about such things? Are we somehow letting the side down if we do?. Ive always had a positive attitude throughout my life , im not naive enough to think that being positive will somehow save me, that would be stupid, but it helps me cope in my day to day life.I am what i am and i feel what i feel and wont apoligise for it certainly not here on the forums,
If someone is haveing a good day or expierence amist all the S**t that is BC shouldnt we rejoice and be happy for them and allow then to feel good if only for that moment in time?.
I hope people will be allowed to post freely without judgement and critisium ,after all none of us would be here if we didnt need some help and support .
Best wishes x
I don’t post very often but have found this thread interesting.
I agree with the previous poster who said she thought that
Pash was talking about the operation itself, not the consequences.
I was very scared going in for my Mx and was relieved to find
that there was little pain afterwards (nurses insisted on giving
me pain killers but I didn’t need them) and I had good movement.
I would have to say that I was ‘buzzing’ the next day and for some
days afterwards. I don’t know why, perhaps it was just relief
that it had all gone so much better than I expected or natural endorphins kicking in. I was in hopital for less than 24 hours.
I have to say, however, that I am very sad to have lost my breast
and am slowly coming to terms with it, but the operation itself
was far less traumatic than I expected. This is what I assumed
Pash was referring to - how well the surgery could go, not that it is easy living without a breast.
I’m glad she’s feeling so well, it’s nice to hear some good news.
I do understand why the word ‘doddle’ might upset some, but perhaps
taking the post as a whole explains the meaning.
I hate it when this happens. Simplistically, we are all different and so are our experiences.
For me, nearly 10 years ago the physical act of having a double mastectomy was a doddle. The emotional reprocussions of the whole experience did not hit until some time later. Then by golly did they hit.
Such a title is provocative and you must have realised that. That is not to take issue with what you are saying, the esscence of it that it was not as bad as you thought. That is good, great to read but I am sure you must have realised it is not like that for everyone.
Thank your lucky stars, keep posting but maybe dont generalise. As someone said, perhaps even ‘For me, mx a doddle’ would be better.
If and when you have chemo you will become aware people react differently. For some its a walk in the park, for others its a life threatening puke fest!
People would love to read ‘For me chemo was a doddle’ and would look for tips and encouragement. To write ‘chemo was a doddle’ could be said to be inflammatory and would undermine the experiences of those who have been really poorly.
If you think of a non cancer comparison. If you post ‘Giving birth is a doddle’ on a public forum, it would get a response.
We are all different but are all in this shit together.
Just wanted to say I agree with Julie and Rhian in that a more appropriate title would have been ‘MX - a doddle, FOR ME’.
As previous posters have written, this is Pash’s experience and I for one am chuffed for you Pash that all’s going well … and sincerely hope that lasts a very long time for you. I also want to send love to those who are not having/or have not had such an ‘easy’ (for want of a better word) experience.
I don’t think other posters on here should be kicked for finding the title offensive as they, too, are expressing what THEY feel. I also agree with Jane and Snow’s posts in that negativity is not always a bad thing. I’ve learnt that to try and fight negative thoughts etc, only makes it stronger. Best to ‘go with it’ and let it pass.
I had a DIEP operation and was thrilled with the initial ‘pain free’ (just discomfort) period and have remained relatively pain free. I felt at one stage like shouting from the rooftops ‘easy peasy’, but this was because the operation and recovery were not as bad as difficult as I had expected, however, a good friend of mine has had a very different experience with re-operating being necessary. My difficulties (I’m in the same camp as Jane with trying to forge new relationships) are with my ‘post op body’ even though I’m grateful to, hopefully, have had the BC removed. I think it’s the post op issues that crop up that can leave you needing longer term support and as Jane says, if others think you’ve coped really well, they can then find it difficult to be there further down the line when they assume you’ll be ‘over it’.
Sorry to labour this point, I just think that in using the title ‘MX -a Doddle’ (which also could read as a statement of ‘fact’ rather than just an individual’s experience), there’s a danger in making those for whom this operation is a struggle, whether emotionally or physically, feel grossly inadequate, as if they’re somehow failing by not embracing the whole ‘positive’ thing.
Well I guess I am glad to see so much activity here, though not in the manner I meant to generate. I hope it has meant that many people can air their views openly. For me, there is nothing personal about all of this. We all visit this forum for different reasons I guess, but mostly for sharing experiences and support.
I am slightly surpised by all the posts that say I should have chosen a different title Of course, everyone is entitled to their opinion, but I don’t agree. If you only read titles on a forum, you are bound to go wrong. If you read what I actually wrote, you will see I said this was MY experience and I particularly said I didn’t want to rub salt in the wounds for those who it wasn’t and hoped I could inspire people who had it coming up that it was possible, not guaranteed, but possible.
I have (fortunately) already done the chemo and it was a mixed bag. The first 3 lots of FEC was a DODDLE (there I go again) for ME, and the Docetaxel was not so bright. I know there are other people who have had way different experiences to that on both drugs, but that was MY experience.
For those of you who would like to take the opportunity to say ‘I told you so’, I cried like a baby for over an hour today - snot bubbles, the works. A million reasons, and nothing at the same time. Still no pain from the MX but some discomfort as the fluid fills me up instead of draining. Wonder about whether it is the other side. Wonder about whether the flashing lights in my eyes are cancer in my head. The the frustration of having to leave my home and ‘squat’ with a friend because running your own business and not being able to work so much means drastically less income. Knowing at 35 it may be possible that I never have children as my periods have not returned after chemo. Tiredness - yes, that bit could have been because I was out on the razz last night, but in a moment of doom and gloom, it’s a reminder of the tiredness of chemo.
Anyway, as I do, I had a hug with my man, cooked a roast and now I’m back to my normal, jolly, slightly annoying self
hi Pash, sooo sorry to hear the discomfort and upset you have had, if only we could wave a magic wand. I hope it improves fast for you. Wow you had a night out? how many days post op is that? My op for mastectomy is 5th january and your thread has certainly made interesting reading, well for me anyway. Its good for me to know all the different ways in which i may feel. When do you get your results?
good luck and take care
anna
Hi Anna
Glad you’ve found it interesting!
The night out on the razz was a week and a day post op. However, more importantly I did a day out shopping 5 days post op!!! I don’t need to tell you that everyone is different, but if I can send some good vibes over the net, then here they come…!
No idea when I get my results - it may sound weird but they are a bit irrelevant to me…whatever they found in what they chopped orf is gone for good! It was the CT scan at the start of the journey that had me holding my breath. It was in my breast and my lymph but nowhere else thank goodness!
Have a fabulous Christmas and New Year and try not to worry too much about the op (easier said than done, I’m sure!)
Pash x
thats good going, i hope it wasnt all presents for everyone else! I having my brother coming to stay over from Germany for christmas so it will be a lovely chritmas, i hope yours is good too,
take care
anna
I don’t think anyone would want to say “I told you so”, no-one would be that unkind.It’s good that you can cry and let your feelings out -I did not do that because i was too busy being positive, carrying on working, convincing everyone I was over it before the steri-strips were off etc. I know it was another poster who made the comment re denial and I am surprised they see my comments on denial as an insult.To say someone is in a denial stage is not meant to hurt, insult or upset - it’s a perfectly normal stage of grief, according to counsellors,there are a lot of studies out there that support that view. Denial got me through some tough stuff!
We all are in similar boats and I for one only posted because I had a message from someone who was being made to feel like a wimp by her family, who also use the forum, as she was emotionally down after an “easy” recovery physically from mx. Like Diep and Sno I have found that just going with the feelings and allowing myself and others to experience them is probably best for me in the long run.
HI Jane,
Not sure if it was my post you were refering to regarding the denial comment(apoligies if it wasnt) but there is a huge difference between Denial and Acceptance and i think that is what some find hard to understand. Also, it wasnt your post i was commenting on nor did it upset me.
I think the point is still being missed that people should not be judged or critisised for posting how they feel.
Pash,
Sorry to hear you were a bit upset yesterday, it is perfectly understandable and its good sometimes to have a good cry and let it all out. Hope you had a great night out on the Razz lol and realy pleased to hear that you are back to your Normal Jolly self You Go Girl !!.
All the best to all
Lindiloo
Thanks for your comments and I’m glad that at least you were not upset by my comments! It seems a few folk were and for that I am extremely sorry,I certainly would never weant to hurt anyone, though I think that what I said was true.
You are right there is a world of difference between acceptance and denial; to get to acceptance you have to experience the loss, whatever it is and work through the feelings, denial stops you getting to that point. I guess I just always worry about people who appear to cope too well now as I know that there is no bypassing the pain, whether it is physical or emotional.I also think that in carrying on as normal and being Superwoman we cut ourselves off from support by being too strong and actually, our loved ones can probably take the pain of supporting us if we let them.
So sorry for Pash and everyone who is feeling sad today but it’s better out than in and like She’s psych says, tears are healing.
