Swk1981, do phone the number and speak to a nurse or the someone like me option about how to navigate the sports day from experience you are probably always going to get people who share their experience of cancer be it themselves or some they know/knew, I’ve always used it as an opportunity to raise awareness about breast cancer and remind them that men and women and gender fluid/ neutral can get breast cancer and what to look out for and to get seen straight away and not leave it. You will probably get people ask ‘did it change you’ in my experience that’s been a question I’ve most have asked. It’s your call how you deal with any questions, I think most of the time people don’t know what to say or can be awkward and avoid you because they really don’t know what to say which again can make you feel like shouting “im still me” at the world because remember you are still you, still amazing and still awesome your just processing and take by it step by step and day by day but your still there don’t forget who you are do also look at the moving forward courses, you might find it helpful going forward hope the sports day goes well your doing it for your girls because your an amazing mum and any gossips that might use you at tge coffee morning then shame on them they should be saying there before the grace of God go I. And always remember todays gossip is tomorrows chip paper you will find as you find your feet you won’t care less what anyone who gossips has to say because you will be too busy living your life Shi xx
That’s amazing!!! Well done, you!
Thanks @Shi. The funny thing is that I’m not still me. The thing I’ve realised is that it’s changed me exponentially and I’m patiently sitting with that to figure out the ‘what next?’ bit because I don’t want life to go back to where it was because it obviously wasn’t working for me physiologically to run around like a headless chicken. My perspective on so many things has changed. I was always the lighting technician at plays at school and never on the stage. This feels like a repeat of that desire to not be stared at. I’ve found that often you end up dealing with other people’s fear rather than them being supportive and it takes you back a little to those early days of “what if’s”.
THIS is why I’ve kept myself hidden on the farm for 4 months. Eek!
@altoan I think that comment is just bonkers. They would know the answer is scans or recurrence. That’s a perfect example of having to deal with other people’s fear.
Xx
do everything your own way in your own time concentrate on you and do plan things to look forward to, little treats and then when your through treatments do the things you’ve wanted to do but either put off or never felt confident enough to try you can achieve anything and be whoever you want do look at the moving forward course for when treatments finished hope sports day goes well and hope you get compassion and gentle understanding from people anyone who oversteps the mark and speaks before engaging brain, remember that’s their problem not yours Shi xx
OMG you are so good, I’ve just read through the link and that’s exactly what I have !! I will order some cream and speak to the doctor at my next chemo on Friday, thank you x
I understand how you feel regarding the sports day event, it must be very difficult, I also like to hide away , I’ve got what I call a dog walking wig that I bought off Amazon that I wear with a cap and when I want to blend in I pop it on and keep my head down, but it wouldn’t work in a situation where everyone knows everyone. The only advice I can give you is to remember how strong, beautiful, courageous, kind and important you are, and any small minded people that want to make you their gossip should be ashamed,
10 piglets congratulations, what a fabulous way to enjoy a weekend, fingers crossed mamma maud doesn’t squash any
I think it’s mad this day and age that people with disabilities and illnesses are still made to feel that they’re the talking point/odd. That might be the Scottish in me though😂 you’re being a great mum in going to support your daughter irrespective of anxieties surrounding it and if people want to make a thing out of you visibly having cancer that says more about them. It honestly baffles me how grown adults can be so insensitive and gossipy🙈
I know this may be awkward for you or you might not want to do this, but personally I have been correcting people (gently) if they come out with extra stupid cancer bingo stuff as mostly it’s ignorance or old stuff they maybe heard years ago and tbh I’m fed up hearing stupid things. My husband actually told someone at his work that it wasn’t helpful when he got a strange ‘relative that had cancer story’ too as he’s fed up with it (he’s more direct than me😂). Another thing is if anyone starts quizzing you or going on about it then just remember you don’t need to tell them anything. Quite frankly your health and treatment is no one else’s business and it doesn’t need to be… people may be curious, trying to be helpful or just be trying to make convo as they don’t know what else to talk about but if I’ve on a couple of occasions now just said yeah I’m doing ok all things considered thanks then followed up with I’d rather not keep talking about it as I’m here for (whatever other reason) and it’s nice to be doing something unrelated…. I’ve found people have respected this and conversations have moved on. Generally people mean well but I feel like I’m having the same conversation with people over and over again or getting the same silly ‘don’t eat sugar as it feeds cancer’ type comments so I politely redirect now if people keep coming with their questions.
@altoan it sounds like ignorance again and it’s unfortunate that people don’t understand the impact of their questions!
Go the Scottish! It was such a breath of fresh air in Glasgow. Empowering rather than pitying.
I’ve found men are better than women in their response. I had a very old gentleman at Badminton Horse Trials smile at me and clench his fist in the air like “You’ve got this!” and it was so sweet. Meanwhile 60% of women gave me the “You hurt my heart” look. I like to disarm them all by smiling right at them and making eye contact to defy their belief that I’m pitiful.
I think your approach of “I’m soooo bored of talking about cancer!” is probably the best approach because it shuts it down nicely.
Naughty confession though…a group renting a holiday rental through my company were being very princessy and rang through yesterday complaining that they’d run out of shower gel (the other 5 bathrooms had 500ml shower gels in them but they didn’t want to share them between bathrooms). I drove half an hour to the house and dropped off a fresh Cowshed shower gel for them and purposely took my scarf off before going in to make them feel bad for wasting an hour of someone’s day. They’d apparently been very shirty on the phone about it but they backtracked very hard saying “Oh, we didn’t need you to do that!” when they’d made it very clear they expected it! It was the first time I’ve used the cancer guilt trip card and it felt weirdly good to make them feel bad . Yes, I’m a bad person but I couldn’t help myself after the same group insisted we go on Friday night to swap batteries in the remote control for them, despite there being spares they. They didn’t think they should have to do it themselves.
Good on you!
@belle1 what a perfect response, I will also take your advice on board, thank you
Lol I actually love that…. And they totally deserved the guilt trip😂 some folk are so high maintenance it’s unreal!
Just been catching up - @gromit12 and @altoan you both look great and I’m so pleased you had a good time. I know how you feel about wearing a wig - I always worry that people will know it’s a wig but genuinely, looking at your photos, you can’t tell!
@swk1981 - I have fully sympathy regarding the school event. I hate being the subject of gossip or interest. Initially I wouldn’t tell anyone at work except a few key colleagues as I couldn’t bear the pitying looks or knowing people were talking about me. Over time, I’ve told more people but I would still be anxious about a social gathering of people I don’t know. A friend gave me a piece of advice and said ‘play the cancer card when you need to’ it can get you out of things when you don’t want to do them or don’t want to talk to people about it. I’ve used it a couple of times now - and like you with the shower gel, I’ve absolutely made it clear when people are expecting too much! Hopefully you’ll find a way of navigating the sports day that won’t be too emotionally draining for you, Emma x
First of all, I absolutely love this amazing group!!! You have made smile, laugh or wanting to give you a hug. You have all got this.
I first logged on around the time this topic came up, and sort of skimmed through briefly and went offline due to worrying that either I may not be quite in the same boat or come across myself well.
I am Deaf, and I am never ashamed to say so. Don’t get me wrong, it can be hard at times mostly because of the communication barrier, whether trying to get hold of the interpreter in person for appointments or the next best solution is an online interpreter (if the wifi connection is okay). Then grammar is not my forte as I was born deaf. I am lucky that my BCN has been very supportive in that she sorted all this out for me from letting everyone at the hospital communicate with me via text/email as well as having an interpreter with me for various appointments. The only time, I don’t interpreter with me for any of my chemo treatments apart from my first Chemo on Easter Sunday. I do feel like my human rights were stripped away there and then because I wore a cooling cap for the first two so it was for me to lipread without my cochlear implant. Another thing, I couldn’t exactly call up to support groups whenever I could or attend any of the groups in person.
Not to put a downer here, with the said above. I have been relatively lucky with my treatments so far. Except I didn’t like the first Phesgo being injected into me on Friday.
In replying to some of you, I apologise in advance for remembering all of your names: Well done for the half marathon or even for a short walk and for going out to parties/events in your glorious outfits!!
I personally don’t like picking up my youngest child from the school grounds, as I feel I am not being included especially with the year group parents. (There has been one time when I cried outright, and then later took my sunglasses incase I ever cried quietly.) Some of them knew earlier on about my cancer as I felt it was important for my child to talk about it with her friends. I bravely went all bare with my head, pretending I was Demi Moore out of G.I. Jane.
Don’t want to drag on here but I thought I should introduce myself here.
I am using this to protect my nails, seems to be doing it job so far. In case anyone would like to know.
Hi - Welcome to the chat☺️ I’m glad you decided to introduce yourself! At first I didn’t think I’d be interested in a forum but I had a wee look and seen the messages on here too before I joined and have found it useful and also nice to speak to others going through the same. I can only imagine having the additional stress of trying to sort out interpreters but it sounds like you’re doing great and glad to hear your treatment is going well so far. Thats really rubbish that you’re made to feel like that by the other parents! We’re all here and will get through this together…. And we’re a chatty bunch😉
On a random note I just found this and thought I’d share as I quite liked how it was summed up!
Thank you. I will try and keep logging in.
Hello @pinklady2!!!
That sucks about parents at the school gates! I’m so sorry that happened but am slightly in awe that you went full GI Jane!
I cannot even imagine how hard it is to do this deaf. There’s so much information to digest aurally and to go into chemo so alone would be terrifying.
On a side note, I learnt about deaf names last night and how it’s a unique sign for each person and normal represents a quality of that person. That person was called Eden and so it was the sign for E and then a circle around the face meaning ‘pretty’. Her deaf brother chose it for her. Do you have a signed name like that or do different people give you different names depending on how they view you?
So pleased your treatment is going well. How far into it are you now?
Sarah x
When my hair first started falling out, I had both my daughters cut my hair as it was as much their journey as it is mine. My little one loves to rub my hair daily and I think that gives me a boost to not hide it from the world for her.
Yes, I was given a signed name at a Deaf boarding school as my name is Katrina and it’s not easy for many people to pronounce my name. So you put two hands up sideways on each cheek and gently make clawing action like a cat. Kat = cat.
I was first diagnosed in February, I had completed with three rounds of EC. And then started on Phesgo + Docetaxel two days ago, and three more rounds to go but will know after the next one whether the lumps have shrunk. If it is not, then they go ahead and have surgery in the summer. So will hopefully know better sometime in July.
Don’t get me wrong, EC have left me very nauseous and out of breath if climbing up anywhere and a terrible brain fog, that I couldn’t read, watch anything or communicate much with my family. I do get blurry eyes and lightheaded but that is down to low blood pressure. 99/60, the last few ones were. But I typically have low blood pressure, anyway. I am always aware of this and try to them notified.
With this new chemo round, my tummy feels odd as if my stomach is on fire of some sort. Not quite had it before. Going to the loo a few times a day for .
Welcome @pinklady2, so glad you decided to join us and I’m in awe of your story 🩷 I’m not a typical social media type of girl, don’t do Facebook and that type of things and I’ve never chatted on a forum before, I do have instagram but mainly for the cleaning tips and to be nosy at peoples houses school run sounds awful why are some people so thoughtless? My youngest is at senior school which is just round the corner from me but my lovely friend comes every morning to drop my daughter off or she walks with her daughter so I haven’t got that pressure,
Hope you find this group as supportive as I do, the ladies on here are incredible, make me laugh, cry, share there stories and make you realise your not alone in the journey, hope this will be the same for you 🩷 ps beautiful photos x
@belle1 Mountain lion in my fridge…… brilliant analysis xx
Oh my goodness @belle1, this made my day but especially this quote and the part at the end about not being sure the lion is dead. It describes this all so perfectly!
I sent it to everyone in my family in the hope it would help them see it a little from my viewpoint as I often put an overly positive spin on it to protect them or I use humour to dismiss it. Xx