I have some stock answers if I don’t want to talk about it:
I’m having an “ignore it” day, tell me what’s happening for you?
Don’t be nice, I’ll cry (and please no head tilt - if I’m feeling feisty)
I don’t feel like talking about it right now
My initial choice was to minimise numbers, but now loads of people know and if they ask how I am, sometimes I vent my feelings (healthy) and sometimes I keep it vague and ask them a q about how they are ( haven’t had many head tilts, but might do an exaggerated one to make them think - without confrontation). It also depends on the particular relationship.
I did find that for some people I ended up having to set some really firm boundaries. I asked people to trust me to ask for help if I needed it and gave some people some practical, little jobs that needed doing that I was struggling with because of surgery.
Thank you @rbf, @buggeringon. I tried to speak to my step-mum today, as she kindly chauffeured me around to the LGFB make-up session and wig fitting. But, she didn’t get me either.
@rbf It’s like the theoretical side of my head and the emotional side of my head do not align. I’m still stubbornly at that stage of feeling like my body has failed me. @buggeringon that’s is really helpful to think of stock answers to give. The 5 friends I’ve told all lead by what I need, but not everyone is like that as you say.
I’ll call my BCNurse tomorrow, she has been wonderful throughout. I’m sure she won’t mind me popping in for a cry again.
On a positive note, the LGFB make-up session was wonderful! There were 8 ladies there who were all lovely and two ladies delivering the session. They take you through a skin care routine with the products in your goodie bag, and then how to apply all the makeup products. Whilst chatting, I was also able to ask the other ladies about how they had shared their diagnosis. That has helped feel less manic today. I know it stems from Monday’s meeting, and I really hope the new drug suits me @nib32 thank you
Not much luck on the wig however, the one the lady had ordered in looked wiggy, so got to wait for the others to come in.
Feeling better than I did this morning, thank you for listening
@tigress42 It looks great. I have the LGFB workshop next week.
I went into the office today. The last time I was in the office was actually the day I got diagnosed so that felt a bit weird, and although it was nice seeing people, I found it quite overwhelming knowing that I won’t be back in the office until after chemo now due to the risk of infection etc. Then got home and husband has been poorly for days, really suffering with this horrible cold going around. So I’m sleeping downstairs to try and steer clear of the germs. So having bedding in the living room, the sound of husbands coughing and spluttering, and the general overwhelm of the office day have me shouting fuck off fuck off fuck off internally on a very regular basis
I also booked a wig appointment for 2 weeks time so that was weird. Like wtf is my life now that I have to find a wig in case I lose my hair - probably not the best day to sort it today.
Sorry, I’m too over it to respond properly to all your great posts, but I agree with it all.
@mair_read49 Oh lovely. I’m sorry to hear today is a rough one for you. Thinking of you xx this will pass. We get through this one day and one moment at a time.
Not sure what your music taste is, but ages ago when I was having an off day, a friend introduced me to “a little bit off” by five finger death punch - it helps me on some of my off days xx
Night owl hellooooos … finished steroids today so ping still awake. 1 day post TC / 1 and it’s been no bother at all. Taking nausea tablets breakfast, dinner and bedtime regardless for 7 days - pre emptive rather than wait and get nausea, heeded by previous drug reactions.
A little rose pink to cheeks and a bit poofy but nothing to ‘tick the book’ for. Dreading the slump Wednesday- Friday but have pre warned family, beware, lol. Eating and drinking normally at the moment and bottom end being grand TMI … BFF came over for chat and cake - socially distanced like covid days - I’ve a box of face masks and hand gel prepped at the front door. Not hoarding loo roll or pasta - yet! Left window of livingroom ajar and door open. Think ‘big shop’ bill will be funding Domestos bleach, wipes and spray for several months going forward.
***I’ve read about some of you ladies having heavy emotions about this shit show. Nearly 7mths post diagnosis I do still hit walls of stupid, unfortunately. I love the standard response answers - nicking that idea.
I’ve a group of friends on FB, small and mighty, but spread from local, national and international. I outed myself to everyone in a oner as i believed it to be private group of friends and wanted it out and done to those I actually know. However, a person within the group believed this meant it was ok that they could share my diagnosis … they did so in a very public group meeting and organised a whip round - didnt think i’d mind, i’d spread it on FB - 50 ppl, small and mighty. I did mind. A lot.
By location alone cancer is ours. We couldn’t control it becoming part of us. We have little control of the medical side or even getting full information about what is happening to us at times. We own ‘we say who, we say when’ sic Pretty Woman. Choice. It is incredibly frustrating to become spotlighted when you arent ready, wanting or needing. Over the last few months I have howled in anguish with cries so guttural I didn’t think I could stop, raged, screamed and quietened. All of it is ok. It is not ok to be discussed, boundaries.
@lumpybyebye glad to read you are so far bearing up well after your first session… Particularly as I lie here awake feeling anxious as my first one is in 5 hours time !!
Hope the slump after steroids isn’t too bad
Those who have now had a chemo session, when did you take steroids? Is it a daily thing, just for a few days for each cycle etc? I know it’s impacted sleep so just wondering how ling thatcwill last and how often. Thanks x
Afternoon @Mairead_49 im still in bed - think i slept eventually but weird awake thinking type dreams so pooped! My chemo cocktail is Docetaxel 1hr followed by 1hr Cyclophosphamide… steroids day before and two days after. Today is day 3 so no new steroids. Feels like that trippy tiredness you have with newborns. Awake ish, functional but checked out!
I took my steroids at 7am and 12pm (ish) this meant when i started my cold cap cool down for my first session i took paracetamol, steroids and anti sickness ( unit gave me those) one after the other as it started.
Even taking steroids midday goofs up sleep but they are to lessen side effects from chemo infusion. So good, Bad Medicine! Youve got this.
@rbf hope you relaxed into it. I managed to go to the loo a few times during 5.5hrs pushing my meds, lol. Beware of cold cap tubes though - mine nearly had a mishap in the loo pan, wore them like a side ponytail after that.
@lumpybyebye thank you for sharing about your journey, I’m not sure what other drugs I will be given now and waiting on oncNurse appointment to discuss what’s what now.
My new HR contacted me today as a well being check, the lady contacts me each week however I feel is supportive. Ended up crying down the phone… she was lovely and reassured me what you mention @lumpybyebye ‘we say who, we say when’.
Thank you for everyone’s support
I feel less like I’m loosing my marbles today. So decided to be productive and did both kids birthday present shopping online and Christmas shopping; I can keep myself busy wrap it all (however wrapping Christmas presents in October sounds like I’m loosing it ).
Thank you so much ladies.
It was a strange experience, but ok!
I had infusion of steroids before chemo and sent home with oral steroids for 3 days.
Cyclophosphamide made me feel like I’d eaten a big lump of wasabi for a little while! Nose was really sore and stinging and my eyes were watering. Short lived though.
No reaction to docetaxel during infusion.
Sent home with a goody bag from a volunteer, which was very sweet.
Pharmaceutical good bag of the steroids, ondansetron, metoclopramide, filgastram injections, sharps bin and a forehead thermometer!
Had a bit of an iffy hour earlier once I was home, but I was due metoclop so took that and not too bad since. Fingers crossed!!!
I just feel mentally drained I think and in that weird anticipatory waiting period wondering what / how bad side effects will hit.
But have been out for a stroll with the dog this evening, and now in my PJs on the sofa!
I’ve opted not to cold cap, so can’t comment on that - another lady in the unit seemed to be coping ok with it though.
I will say all the nurses in the unit were absolutely lovely and made me feel very safe. They also stressed repeatedly that I am to ring them if I have ANY concerns at all, any time of day or night, which was reassuring.
I’ve now made a meds chart to keep track as my memory is awful at the best of times! And going to track my side effects too.
And @tigress42 I think we’ve all felt we’re losing our marbles at some point during this, so you’re in good company! We can only ride out the rough days, in whatever way helps, and enjoy the good days.
I was less overwhelmed yesterday which was good, but I feel like more should be happening and its not. I’ve got my port fitting booked in for Monday, but Oncology have not made other appointments to prepare for starting chemo which I find a bit strange but I’ll wait until I go in for the port fitting to ask why. It’s bloody hard having to advocate for yourself when this is already so hard.
@lumpybyebye I hope you are feeling ok with the steroids etc.
I struggled so much with constantly feeling like I’m having to chase everything and advocate for myself when I was feeling mentally exhausted enough!
I had my PICC line insertion 6 days before I started chemo and I did find the lady placing the PICC had a long chat with me about the chemotherapy, so maybe that will happen for you at port fitting?
Hi, I felt the same as you, I had an appointment with the oncologist to sign the consent form which was 5 minutes, a brief chat with the nurse and started chemo 12 days later. I didn’t get a prep for chemo chat so I emailed the oncologists secretary with a question about the side effects e.g. if I needed help, what to do, how will I get any meds if I got a side effect and the nurse did call back but just said we wont know what side effects you’ll be getting as everyone is different so just call the helpline. I didn’t want to make a fuss so didnt ask any more. What happened was it all collapsed last weekend. My side effects started Friday, at my trust you cant actually speak to a nurse, you leave a message and they call back. So when things escalated, day 4, it was a weekend, I felt alone and vulnerable, and my side effects meant I wasn’t well enough to help myself. The advice they gave was to go to see my GP which I wasn’t well enough to do. I think I called 3 times. So I struggled on in a black hole and managed to get the treatment I needed from 111 on Monday (I had oral thrush in the end). The good news is, it’s day 10, and I’m so much better. So my advice would be to call the BCNs or email them with a list of your questions and I think you mentioned you’re starting in 2-3 weeks so you’ll have time to get all the answers you need. I totally get it being hard to advocate for yourself so please use the next 2 weeks getting as much info from them as possible to be prepared. The bad days only lasted 4-5 days but when you’re going through it, you don’t know when it will come to an end, and it will, days will be brighter again x
Thanks @rbf that’s good to know. I ask questions of any medical person I come into contact with so I get as much detail as possible
I’m just writing myself out a set of detailed instructions for cold capping so I can take that with me to make sure it’s fitted correctly according to all the Paxman info. I think it’s the one area where I will be probably asking to do it myself so that I can do it all exactly as directed by Paxman, but taking their advice too rather than just trusting them implicitly - wonderful people as they are, it’s not their hair.
@healed I’m sorry you had that rubbish experience! You should have been able to talk to someone very quickly so that’s rather poor that you weren’t given the opportunity. Especially when you already feel rubbish, it’s nigh on impossible to advocate for yourself. Glad you are feeling better now.
@healed so sorry to hear you had that bad experience , sounds really scary, and of course things always go wrong at weekend. Have had that experience (post surgery, not with chemo) of being told to contact GP or go to A&E and it just didn’t work. So was that a special chemo helpline you were told to call, and they just told you to call the GP? I was hoping would be more organised, but maybe all trusts are different. They said something to me about giving me a red card with a chemo helpline number on it, but haven’t got to that stage yet.
@Mairead_49 good idea about asking everyone you meet, I will try to do that too. Am compiling a list of questions all the time …
Good tip about taking all the cold capping instructions too.
Hope everything starts coming together for you soon and you can get started
!!
).
x