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
Morning Everyone! And welcome @pinklady2, everyone on this group has been so lovely and supportive and as someone who always says I’m fine this is a great way to talk to people and be really honest!
So I made it to the party in Stratford upon Avon, a bit like @swk1981 i was dreading the cancer comments and wearing the wig etc. A few times I just ended up saying let’s talk about where everyone’s going on holiday as talking about cancer is soooo boring and that seemed to work!
@altoan 5hours at a party amazing! You summed up my thoughts entirely about wanting to tell people to shut up! One of my friends was trying to be supportive about my wig and part of me wanted to scream and shout and say I hate it’s not what I want or have chosen. I have no hair and it sucks! then I feel bad as people are only trying to be nice! I loved your photo too x
@pollyanna1 and @elle16 needing a translator made me laugh! I agree I seem to use the word thingy a lot!
@gromit12 you look lovely x
@ivy-cat , @isthisreal , @ivegotthis01 i hope that you guys are all OK too x
@swk1981 i can understand the appeal of hiding away! Sports Day will be a challenge but hold your head high, there will always be people at school who don’t have anything better in their lives than to gossip which actually is quite sad in its self! You however have a lovely family, a farm a business and have just delivered Mauds piglets get you! I couldn’t do that. So you rock your head scarf (which by the way I still can’t make it look like yours did in your photo!) cheer on your little ones and they will love you even more for it. Sending you an extra big hug xxx
@belle1 OMG Mountain Lion…. I think every forum board should have this pinned at the top! It’s is good. The Kale bit made me laugh! I am going to send it to some of my friends.
I’m really sorry if I have forgotten anyone, if I have you know I’m thinking of everyone on this group and I really appreciate all of you! Here’s to a brighter week for us all.
Oh and here’s a photo of Fraser and I from Saturday! X
@hc1973 wow! You look stunning. Well done on going and smashing it. I have to say at the birthday meal on Saturday I was treated v sensitively- it was basically a family meal with a couple of friends - me being one- and I knew virtually no one. Sarah has told her family I was having treatment but no one brought it up, until I had to say something for some reason, and Sarah’s mum just said yes Sarah had mentioned it to me. Turns out she’d had cancer and chemo about 10 years ago and is still rocking it, but we talked normal stuff. I do appreciated the way it was handled
@hc1973 - you look amazing - well done on making it to the party and managing to look so fabulous!
@pinklady2 - welcome to the forum - it really is such a safe, supportive place and I value it so, so much.
@belle1 - I think you have chemo this week? Fingers crossed it goes well for you
@pollyanna1 - I think you also have your LAST chemo this week? Hope it goes ahead as planned.
I am finally starting to feel ‘normal’ a week out before my next chemo session. I guess I just need to enjoy this week as much as possible and focus on being there for Oscar as he takes his last few GCSEs before finishing on Friday.
I’m off to get my picc line flushed this morning and I’m a bit concerned about it as the line seems have to gone further into my arm and there’s now only a little bit sticking out. Not sure if they can do anything about that but will ask the nurses if it’s something to be concerned about as I don’t want it sticking further into my heart!
@elle16 and @swk1981 - hope you are both fully recovered now ahead of your next round of docetaxel - and @gromit12 - hope you have escaped the ‘taxel trots’ so far!
Hope everyone else is doing well, here’s to another week!
Emma x
Got to go and have an x ray to see what’s going on with my picc line. It’s working fine but they just want to check it’s not kinked or pushing further into my heart. There’s always something!
Hc1973 great photo Shi xx
Yeah I’m due to start Docetaxel on Friday so just a bit behind a few of you on starting it! Strangely enough my 4th round of EC is the best I’ve felt since chemo started so it’s been nice to have more time feeling normal before my next chemo/starting the new one as I was finding getting it every 2 weeks was getting quite challenging. Really feeling grateful for it as it feels like it’s given me a mental reset ahead of the new regime in case that knocks me for six🙈
Hope everything goes ok with your PICC line!
Glad to see folks liked the post I shared - the kale bit made me laugh too😂
@hc1973 you look amazing - great photo of you both!
You look incredible 🩷 hope your X-ray goes ok and it’s nothing serious x