Scotty - I hope your wound starts to settle down soon. Did you still have dressings on from surgery? I’m wondering how you knew it was infected? I have had my drain out now and occasionally when I move quickly, I hear an internal sloshing! I’m not too worried about it though - I’m hoping my body will reabsorb it. My arm movement is improving and the exercises are easier, but my armpit it very tender and maybe more painful than it was initially even though I’m taking brufen 3 times a day and codeine inbetween. My dressings are still on and will be til Thursday, so I can’t see what’s going on! Or examine the surgeons handy work!
WTP - I had those biopsies under mammogram at my initial diagnosis - they took 6 - i remember it was uncomfortable and traumatic but I was in such a daze so I think didn’t grasp the full extent of what was going on at the time. I hope the results are OK and you get some answers quickly. I think when we don’t know what’s going on, we automatically think the worst and worry and the drs don’t tell us everything as think we already know what they’re going on about/thinking, or sometimes, they don’t actually know themselves!. Maybe they want to repeat the mri and use contrast or something different to your last one, to see how the ghosty/calcification area shows up? I feel that I get those looks from my team sometimes too - like they know/suspect something but aren’t telling me - but i think its really my anxiety and not having all the facts that is putting a spin on things. I’ve even considered requesting copies of my medical notes more than once throughout all this, so I can get all the information, rather than it being given to me in dribs and drabs. And I’d absolutely love to be a fly on the wall during the MDT meetings about me!
I am hoping to get my surgery pathology results back this week…Gulp.
Hope everyone is OK?
X
Egg/Lighthouse, thanks for the info re hormone therapy etc - I will certainly look into it and ask for an appointment with my onc/surgeon to discuss it once I’m through this surgery stage and onboard with radiotherapy. I worry sometimes as think I know much of what I know only through everyone on this site, not from the people caring for me! My team have usually been OK when I have asked them about things I have learnt on here, however they never volunteer anything so I wonder what else I’m missing?!!
Blue - like you my team never volunteers things either - I had to ask them about the hormone stuff and had googled various trials etc to ask them about. I don’t think I will be seeing them now until after the rads and I haven’t had an appointment for that yet either - but I won’t be starting rads until Sept! It seems so long away!
Blue - thanks for your message. It’s good to know I’m not the only one projecting my anxieties onto everything the docs say ? He gave me a massive hug at the end which I guess was because he knows it’s such a horrible procedure but I kept thinking it was because he knew something sinister about my situation… good luck with your results this wk - I’ll be thinking of you! ?
Egg - that’s what I thought too ? I’m booked in for the 6th July with guidewires going in on the 5th. I checked that it’s ok to fly after so booked a trip to Sweden on the 12th… then get a random call from my BCN asking for me to come in for this biopsy - she didn’t tell me it would be a series of biopsies or any different to the initial one. She was quite clueless about it to be honest. I quizzed the radiographer and he said if it turns out to be cancerous or precancerous cells then I’d need to change op to mastectomy as it’s a large area. But as the team all expected mx the whole way along, in their eyes it doesn’t really matter - however, to me they gave me a glimmer of hope in having the smaller op so now I’ll be really disappointed. Not to mention missing my trip (visiting a very good friend just before her baby arrives!). I know in the long run it is all to be safe and obvs preventing recurrence is so much more important than saving a breast or a trip but it’s the constant curveballs that this stupid disease keeps throwing - doesn’t help with the anxiety ?
Egg - try not to worry. In the words of both radiographer and onc, mine is " not a straightforward case" (which are? ?) so I think it’s not normal to need this after chemo xxxx
Hi Suze - which hospital are you at? You could phone your BCN and ask her about the trial perhaps?
Where did you find your personal trainer? I really want to start some fitness but slightly anxious about doing it myself after months of doing nothing and having all the chemo.
Egg x
Ahh thanks Suze! ?? spoke to my BCN earlier and she’s going to push for the results by weds ?
Egg - if you’re based in London, this is the personal trainer who did a talk at the Younger Women course - oomph.london/ she also did a demo of Nordic walking and said it’s particularly good for cancer peeps. She also does a free running session in Hyde park on Tuesdays - couch to 5k. I might try to go along at some point (although with surgery and rads coming up, I’m not sure when ?).
Xxx
Thanks wtp ive just looked it up and may give it a go
Thanks Wtp have looked it up and will give it a go
Sorry posted twice! Thought it hadn’t gone through he first time. You’d think by now I would know how to use the forum! Chemo brain strikes again! It’s getting really bad now?
Suze you mention Nordic walking and penny brohn are you doing this as their national centre near Bristol?
Joking aside re chemo brain Egg, how is it really for you?! I am starting to get really concerned as my vocabulary, concentration and conversation are still way behind what they were pre chemo and I’m now nearly 6 weeks post final treatment. Yesterday, I couldn’t say ‘blue’ when directing my husband to something! It went like, ’ next to that…(hesitate, stumble, nothing come out of my mouth for 10 seconds)…red…purple…green…blue pot’!!! On one hand it’s slightly amusing, but on another, very concerning, upsetting and frustrating! I’m hoping to go back to work in a couple of weeks but really don’t see how I can perform my role like this?! Plus, the hot flushes are still as severe - I was hoping they would settle a little post chemo - and i become burning hot and break out in a sweat every hour or so. Not very professional! It makes me want to hide myself away!
Are you back at work Suze? I’m hoping by going back I can become more like myself again, have a focus and distraction and not be consumed by this disease anymore. My friend who is 11 years clear and was triple negative stresses that piece of mind does come, but that its slow and builds up as time moves on. She understands when I say I’ll never be the same or have piece of mind again and she also understands that I can’t understand that concept at the moment as she was once in the same place!
X
I AM DONE!!! No more chemo! Went to the ward today as I’ve been having a lot of side effects of numb fingers and toes, plus palpitations. Anyway my oncologist decided it would be safer not to give me the last cycle, as she said after 13 cycles it wouldn’t make a difference to miss it! I will still go for 3 weekly herceptin injections, so it doesn’t really feel like I’ll be away from the chemo unit, but at least no more cannulations and steroids!
Blue - my chemo brain is awful. I am swoppping words all the time (my sentences make no sense) and also forgetting people’s names - and these are people who I know really well! I introduced a really good friend of mine the other day as Prunella! I have NO idea where that came from. A friend of mine who finished her chemo 3 months ago said it does start to get a bit better as time goes on, so I’m holding onto that. Like you I also have the hot flushes so am slightly dreading starting the hormone treatment which I can only imagine would make it worse?
Jackie how are you getting on? I think this may be your last week of radio so hopefully the journey is not too tiring for you.
Big hugs to all
Egg x
Whoop whoop, hooray, yippee Egg!
Our final ‘chemo Jan 17’ member is done with chemo!
X
To EggG
I am more delighted than I can say to award our final teddy warrior chemo badge and certificate to you.
For bravery and fortitude, well done!
Well done Egg! So pleased for you. I know what you mean about the herceptin. It doesn’t feel quite over does it?
Egg - hooray! Well done! At last our chemo party is complete!
Suze I would definitely be up for joining a private Facebook group.
My brain is still in chemo brain mode too!
Reading about other people’s experiences of having biopsies taken while in the mammogram squashy machine reminded me of when that was done to me pre mastectomy ten years ago. The nurse helpfully said to me beforehand we keep taking biopsies until you cant stand the pain any longer. Great.
I have lost or am losing six finger nails now. So I now have more short raggedy ones than proper ones.
My hair has reached the stage somewhere between Sinead o Connor and a baby hedgehog. But I got offered a seat on the tube again today so I think I am still recognizably a baldy.
Radiation redness getting a bit better but I still have to visit the nurse.
Following all your stories and wishing you all well. R x
Thank you everyone for your kind messages and also to jackie for my certificate. Finally I got one and I can join the party! I hope there’s still some sausage rolls left and you haven’t all gobbled them! ?
Suze I’m not on FB so can’t join you all. Have resisted joining for many years!
Congratulations Egg! What a great feeling, all of us across the line and ready to party.
I’m not on Facebook either although I keep meaning to join. In the past I’ve partly resisted on the basis that I didnt want to be notified every time someone washed their hair but actually I am very interested in the progress of this group’s hair!
Robin, I am also interested in your fingernails - did they come off completely? I can see that a few of mine are on the way but they seem to have a few mm of normal growth at the bottom so I don’t think they are starting again underneath yet.
Suze, I like the idea of Nordic walking, I have been swinging my arms when out walking with OH and the dog because it feels like good exercise so it makes sense. Re the add aspirin trial, I am tempted to self medicate on the basis of what I read about the previous studies, no one has yet mentioned it at the hospital although it is apparently participating. One of the radiographers asked me today what I do for a living because she said I ask so many questions, so maybe they dont want me in it!
Hugs to all, Beedot x
Egg,
Well done, gold medal for endurance!
I love the idea of having a private group but I’m not on Facebook either. Am completely ignorant about it - is it possible to join and just be in that group?
Beedot, ROFL at hair comment !
Well done Egg!! Welcome to the party - There’s a fresh batch of sausage rolls for you!
I’d be up for a Facebook group and I’m pretty sure for those of us that aren’t regular facebookers you could join and just sign up to the group.
I picked up my prescription for tamoxifen today. I have to say my gp has been so very supportive through this. I don’t see her very often but she really is great - always has the tissues at the ready! She has suggested that counseling may help with my fears and anxiety, so am going to investigate that.
Xx