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Wonky
Member
since
27-07-2019
54
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28
Hugs
24-09-2019
10:04
Absolutely Jill, the rows of chairs full of people contemplating their fate are not conducive to wellbeing. I have sent constructive feedback to my health trust today. Envious of the toasted teacakes.
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24-09-2019
09:56
My day. Positive, gentle start. Then what seemed like a passive-aggressive text from a colleague, saying I should be "far more grateful to be alive". Believe me I'm grateful! Conversation with boss next, he's OK. Then guilt trip that I'm off work. Because the myth is once your treatment is over, you are fine. Early night aborted due to hysterical sobbing. Cup of tea has calmed me down, but looks like I'm in for another long night. Thankful there is a pile of books in reach. Thank you Cancer, (not) you have rocked my world!
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24-09-2019
08:32
Hi darling. You do know you are protected by the Disability Discrimination Act, because of you having cancer. X
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23-09-2019
08:27
Totally get this! Thank the lord someone else does too. Thanks for reply. X
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23-09-2019
06:46
1 Hug
I just wanted to share something a physiotherapist told me today. Namely that regular exposure to waiting rooms can cause unneccsary unconscious trauma. Especially if you are doing daily rads, I surmise. I'm aware of huge efforts in NHS to change the 'atmosphere' of/in waiting rooms. Not convinced a form of segregation is appropriate; a clown might help kids and conversely a musician strumming a soothing melody doesn't. And visa versa. If you are awaiting daily treatment my tips are: Ask if you will be given a pager. If so, what is it's range? Can you, without disrupting the NHS staff treating you wander around, rather than being glued to a seat? Small 'community' gestures- my rads dept had a simple wicker basket at 'check in', which was stocked with sweets that patients and staff could help themselves to. This, to me, was the most "human" part of each day. Seating arrangements more conducive to a socially positive experience, than a dehumanising 'production line' .
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23-09-2019
01:18
1 Hug
Hi, not all health trusts operate the same, but you should be able to call in at your radiotherapy unit to be checked by a nurse who will give you appropriate ointments and dressings- there are great cool-gel dressings if the soreness feels 'burny'. And I take it you know no hot baths/ showers, nothing perfumed, no deodorant and no clothing which causes friction. Quite a list but I had problems and stuck to all they advised and it did settle down. Hope this helps and you're not in too much pain.
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21-09-2019
03:37
Hi Naomi, bless you sweetheart. Of course it's OK to post on here, the whole point of the forum is support from other BC ladies. Although I don't have children, I did exactly the same as you, in that I made sure someone knew where my will is and I wrote out an 'essay' of who I bank with etc. I seriously considered appointing a power of attorney and even looked into purchasing a grave. I was petrified and panic stricken as my GP had told me to "prepare for the worst". I was too shocked to question exactly what she meant; I just bolted. Was it an OTT reaction? Looking back now it looks that way, but at the time it seemed completely logical to me. So I fully understand, even though we have come from different perspectives. I hope your treatment is going well, and is not too hard on you. And you are having a lovely weekend with your kiddies. Wonky x
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18-09-2019
11:19
Don't feel guilty; you didn't ask to have cancer; who would!!! You don't give any details, so sorry I can't say anything more but hope a reply is of to comfort you. X
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18-09-2019
09:48
For those interested in this thread. Possibly we can give each other 'Christmas Gifts Of Inspiration'. A kind of an Advent Card ? (I apologise for any offence to anyone of Different Belief; join in to share your thoughts, from your own perspective! ) . Hope and joy to all for this December Wonky. X
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18-09-2019
06:54
I'd recommend looking up the poem Jaybro has referenced, if you feel you are 'wearing a mask' to protect others from your cancer.
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18-09-2019
03:41
Hi, I really admire your tenacity and courage, but a couple of thoughts on what you asked. Your body has been through a lot and I'd suggest you need to watch you aren't pushing yourself too hard. The rads are killing good cells in your body, as well as any stray cancer cells, so you'll not have the normal physical reserves and you are possibly 'running on adrenalin'. Also,you are covered by the Disability Discrimination Act, so you have rights, work-wise. Your boss sounds very empathetic and supportive and possibly is concerned you are pushing yourself too hard, so rather than be seen to be 'trying to prove a point' maybe you should accept what help he is offering? He may also be concerned that you could take ill at work, pass out or such like, which wouldn't be a good thing for you, or him. Also, just bear in mind if you gave the impression of being stubborn, inflexible or irresponsible, it could actually go against you, more than accepting the help he's offered. I'd say give him a bell and have a candid chat to come to a compromise. I'd also add that if your rads team have shown any concern, rather than passing surprise, that you are working, you should heed that they have broached the subject with you. as chances are they are discretely monitoring your general health and well-being, not just your boob. All this said, a lot possibly hangs on how you feel emotionally; if you are coping that's great, but you need to be honest with yourself. That's not giving in, it's just being pragmatic. Hug, Wonky
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17-09-2019
05:52
1 Hug
Hey Mini M. Thank you for such a frank and interesting post, the more the better! Just what the doctor ordered! Had messages from friends today on lines of 'bikini time girl" ....um, no not allowed for a year. You mention Christmas, ooh, do you know what girl, you may have given a gift to many with that. Going to have a think about a Christmas thread which perhaps like-minded will enjoy. Salute you Mini. Wonks. X @jaybro as she will appreciate.
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17-09-2019
02:55
4 Hugs
So ladies, this seems to be the term used for life afterwards. My outcome is a very lucky one; I realise that isn't the case for everyone, so I hope I don't inadvertently upset anyone. I understand that I'm very tired. What I don't understand is that society seems to consider the matter closed once you have "kicked it's butt". You are seemingly supposed to be celebrating. People mean well, but the reality is far from the ethos, as I see things. I'm not advocating we all go around ringing a handbell, saying " woe is me I've just been through a hellish experience", but are we expected to draw a line under it all and pretend life is great, when it was a lot better before those cells in my breast decided to mutate. Wear an emotional mask for friends, colleagues, acquaintances? I'm going to need a whole load of acting lessons, if that I'd the case ( Colin Firth free this month anyone happen to know?) . Or do you have a sort of a preprepared mantra. Something like, yes I'm well enough now to work, drive, not be emotionally attached to my PJs, however I am still recovering, so please bear with, as I might have my moments in the months ahead. Time to transition back into the real world, but it's like growing a new personality?
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16-09-2019
09:10
3 Hugs
Wise words from Jaybro and Evie. We are all experiencing our own versions of 'a living hell'. With greatest respect for and thanks for their posts love to all. Wonky.
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16-09-2019
08:24
Thanks Anniej. You talk so much sense. Books are such great solice, for sure. Very grateful. PM ? Wonky x
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15-09-2019
08:06
Hi, so I'm through op and rads. Rads were tough for me.. It's pretty standard patter that you should feel exhausted after treatment, but what exactly is a 'standard' reaction'? I just want to go to bed with a mountain of books, preferably for a about a year! Does this make sense to anyone? Am I suffering 'survivor guilt'? Is it the Tamoxifen?
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13-09-2019
09:07
Hi Sharon, I hope you got there in one piece! Two weeks post-rads I can report things are settling down really well. It looks like a pickled walnut, but not bothered about that! Was advised to go without a bra as no friction and as very small in the boob dept, took that advise and think it was useful. Weening off diprobase now and upping the Aveeno which smells lovely and is on offer in Tesco ( it's amongst the baby stuff). Hope this helps.
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04-09-2019
09:37
1 Hug
Hi Simi, it's so tough; I know. I'm through 'active treatment' now, but the rads have wiped me out and yes, we all have minds needing healing also! That's possibly harder than the physical treatment as it does seem we are 'dispatched' from the system, to get on with it! Awful that your kiddies can't cuddle you without you fliching; we all get used to giving these 'half-hugs' don't we. Jaybro is very astute in these matters; I'm a bit of a lightweight, but if PMing helps, that's fine. I'd be interested to read other replies to your thread, but sadly majority scan the forum, but don't actively participate. I think your raising the psychological after -effects is very valid and welcome. I just wish more ladies would share their thoughts. Best wishes, Wonky x
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03-09-2019
11:59
Hi Leonie. Could you explain a little bit more about these NICE guidelines please? I was under the impression I had no chance of NHS surgery to even me up and would be so costly to go private.
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01-09-2019
03:38
I should be happy, no? Through op, through rads. Yet feel worse now than the day the surgeon told me I had BC. I cannot make sense it.
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