Wow I’m on big catch up time …. It’s been busy! I’m still not ready for Christmas and panic bought a few cards yesterday - today I need to write a list! A long list!! It all feels quite overwhelming but I’m sure it will be fine once we get there.
I had a review with the oncologist this week and I asked if I was in remission - apparently I am cancer free is how they would describe me - I’ve been on letrozole a month now and was determined not to take any more pills but she convinced me to have the biophosphonates - she recommended the infusions too once every 6 months which I think is what @alig1961 has? This has a 2-3% uplift in cancer not going to the bones - for goodness sake! I’m getting very bored with all this. I think @pat its what you were talking about. Loved the Santa pic!! Good to hear your good news about the margin clearance
Also I was due to see the surgeon for a 6 month review but was moved back - disappointed but guessing there are more of us that he needed to see urgently and so I understand. Good luck @jojoh with your appointment and also with the lymphoma swelling - so flipping annoying I’m sure.
Nails …. Shocking! Going to get a manicure today - I think it should be a miracle for them to do much but I just want to feel a bit better about how I look. Im doing ok with drawing eyebrows and eyeliner for lashes - hair growing very slightly but just feel like an old man. I’m also just tired so everything takes longer - I got so cross and frustrated on a call with my boss the other day I just wanted to burst out crying and thought you’re not going to get the better of me. I finish work on Wednesday next week for a few weeks and can’t wait.
@donna_51 i had catch up with friends yesterday and as you say the small talk is so unimportant- as another friend says when you’ve had a tug you think differently.
Anyway it’s Frisky Friday and not going to get down anymore. Have a fab weekend all … xx
@collywobbles That sounds like good news from your Oncologist re being cancer free. I’ve been told I should have the 6 monthly bone drip thing.
I agree that it is now boring. I’m bored of thinking about it. Bored of talking about it and, frankly, bored of myself
I hope the nail lady can do something with your nails. I love having Christmas nails but I’ve chickened out and cancelled the appointment as they’re starting to look a bit dodgy
Hellloooo team… it’s Friday so a happy day. Lots of thoughts and feelings from everyone now we’re at the ‘end’ or near enough at the ‘end’. It’s soooo hard to get your head round what we’ve all been through and all the different regimes and treatments and medication etc… as many of you have said, we need to trust our team and know they’ve done the best for us and that we’ve done everything we can to kick this cancer up the ar@e and far away. My nearly 15 year old wisely bossed me the other day and said ‘you don’t have cancer anymore, stop acting like you do’! Harsh but true. None of us have cancer now… we all have no evidence of disease as they say and we need to focus on that. I’m not particularly worried about it all at the moment and there really is something to be said about keeping busy. Xmas helps with that! I know I’ll have down days but I keep saying to myself that I’ve done all this so I can LIVE and ENJOY not mope and worry… let’s see how that holds up in January, the hardest month of the year but the sentiment is right. Life is for living and all that, no matter how long we all have (we could be killed by Xmas lights at home, it’s a dangerous time of year!!!) Ha ha
My friend sent me this and I thought of all of us … let’s enjoy the chaos … love to all xx
Hi @collywobbles. Yes I will be having bisphosphonate infusions but don’t know when it will start. I’m waiting for an appointment to come through to see the oncologist for my post treatment review. Was told it’s between 6-8 weeks wait but a friend has had to wait 12 weeks for hers. I had my dental check up 4 weeks ago and now I’m the proud owner of a new crown. The dentist said I’m now ready to start the infusions. The bisphosphonates boost my stats by just 1%. I’m going to ask about having a bone density scan.
Hair has grown about an inch but only on sides. I look like a monk. It’s very fine and sparse.
I’m having quite a bit of pain/tenderness under my armpit and I can’t seem to get comfy when sitting on the sofa. Does anyone else have tenderness? I feel meh I don’t like this new normal. Nails look awful but luckily aren’t lifting but neuropathy in my fingers is still there and I drop everything. I’ve become terrified of drinking alcohol and I think of reoccurrence continually. I hope I find a bit of Christmas spirit soon. I think I’ll start to feel a bit better when I look in the mirror and don’t see an old man looking back at me. Sorry everyone I didn’t know I was going to be quite so down when I started the text.
Xx
@alig1961 thats exactly how I felt this morning - some days feeling very low and worrying. I’ve been out with great new friends tonight and world looks great again . It is a rollercoaster! Yes bruising under my arm and towards my back - when I saw the onc she believes it is where the nerves are all cut which makes sense - you just wonder and brain goes into overdrive sometimes. Just waiting to see the surgeon in January. Yes to bone density test - I believe that will happen soon.
In the grand scheme of things we are going great - I love @donna_51 saying …. Life is for living and we’ve done so very well. I’m actually starting to feel a little proud of what I e done this year.
To finish off with a laugh …. I happened to look under my arms when applying deodorant this morning and thought good grief I need to shave under my arms before I put my strappy number on tomorrow night meanwhile I will wear a wig and pencil eyebrows and have false eyelashes. I just laughed to myself.
Let’s go and enjoy what we have …… . Hugs to all xx
@alig1961 it’s ok to feel absolutely awful and down and scared and worried… all perfectly normal and we’re all here to listen. We understand the exhausting ups and downs of it all here. You will feel better and brighter days are ahead… we will have hair again and we’ll recognise the women we once were and the fabulous women we are going to continue to be. Be kind to yourself, do some low level nice comforting things. A big virtual hug for you xx
Anyone else stiff and aching all over? I can barely move this morning and I don’t think there’s an inch of my body that doesn’t ache. I’m not sure if its still the chemo, is that possible after 2 months, or if its because I’m doing more than i have for the last 6 months?
Thought I’d share this on here. Someone posted it on a cold cap page I’m on and it did make me well up. People are always saying how strong I’ve been but I tend to brush it off and say I haven’t, you just don’t have a choice but to go through it all. However, maybe we should accept these comments because actually we’ve been through and are still going through a lot so maybe it’s right.xx
@pat
I am on the same drugs as you. Starting in Jan…
Do you think we all need a new group in the new year… like a moving forward group…
my emotions are so mixed… even in the same day. So up and excited for my life to continue one minute and then anxious about cancer coming back the next…
It’s exhausting…
@charley it is all exhausting and actually quite boring now too. I’m quite anxious about the Letrazole as so many people have side effects but I keep telling myself that the people who have bad reactions are more likely to post whereas the ones who have no problems don’t say anything. I’ve already got loads of joint pains and stiffness, no idea why, so I don’t want more!!
I’m awake & up @ 4.00a.m… who knows why… but it’s dark and lonely, even the dog is asleep. It’s hard not to think dark thoughts when it’s dark and you’re on your own. @wjs I get that picture… we have all been strong and all I’ve heard recently is how ‘amazing’ I’ve been. Yes, maybe… but I don’t feel amazing at the moment, a bit broken and not sure how to glue myself back together… Sorry team, clearly being up in the dark before dawn is not good for me!!!
Anyone up for setting up a Whatsapp group? Might be nice over Xmas to send happy pictures and if anyone is struggling/wanting to reach out, it’s easier to respond?
Totally get how you’re feeling @alig1961 and @donna_51 and have been feeling exactly the same. I want to have ‘me’ back and feel ‘normal’ although not sure if I ever will. When I read that you’re all looking at next steps with drugs and infusions etc and 6 month check ups, I feel way behind, only having had my op nearly 4 weeks ago and I’m also really nervous about my post surgery follow up this Friday, maybe I’ll feel more positive then. We put up our Christmas tree and decs yesterday and I still don’t feel Christmassy
I would definitely be up for a WhatsApp group, going forward, @donna51. We’re all in the same boat after all.
@jojoh I’m in the same boat as you. I had my operation 4 weeks ago today and still have radiotherapy to go and also feel as if I’m lagging behind all of a sudden. I felt very stressed about my post op appointment with the surgeon but it turned out ok. Hopefully yours will be too and once that’s behind you maybe you’ll have the headspace to be a bit more christmassy.
Hi everyone… just reading through all messages and I am feeling exactly the same as you all … up, down, and generally just all over the place lately still!! You guys have expressed it all so much better than me so it’s a small comfort we are all pretty much the same at the minute!!
@pat i am the same ache wise … my whole body feels so old and worn. I put it down to doing too much last week?!? But honestly just getting up from the sofa takes so much effort at the minute!! And like you also so uncomfortable in bed, sat down, just whenever I’m still … so then I find myself pottering around which is probably not helping in the long run!!
I’ve been up at the hospital today as my scar has burst a little … woke up last night and boob was leaking everywhere … quite scary as I was on my own with my little boy! But the surgeon didn’t seem too concerned and said it can happen, didn’t restich but just covered again with a clean dressing (the one I put on had soaked through and into my bralet) and gave me some antibiotics… which is a good job as my boob is now red raw!! So just when I think this week will go smooth here comes another smack in the face!! I have my follow up appointment on Wednesday to discuss results from surgery … although why he couldn’t tell me today when I saw him god only knows!! I did ask about some chaffing feeling under my arm where lymph nodes removed … he said it was my nerve endings not actually chaffing, which makes sense as it’s not red and when I put some cream on it made no difference whatsoever!!
On a funny note we went out to a Santa experience/ meal yesterday and where we were was so hot I ended up whipping my wig off mid meal … Much to the surprise/shock of lots of other children and staff!! my child and nephews didn’t bat an eyelid!! Ha!!
A small win is I am semi organised for Christmas … all presents wrapped and ready to go! Just the most important bit to do now … the food shop Also mum is home … and feeling loads better so that’s been another positive!!
I am trying to rest a bit this week before the kids break up but we will see … there always seems to be something to do!!
Oh wow @charlie22, that sounds scary! So glad it’s okay now and good news about your mum being home, that must be a huge relief.
Funny about the chaffing feeling, I have exactly the same, almost feels like it’s burning when I’m in bed and I’ve been moisturising it too and I suppose these are things from our new normal that we need to get used to.
Hi everyone, ive just been catching up as hadnt been on for the weekend. I too am with all the ups and downs …my hair is a few mm now on my head , had to shave one armpit, the legs probably need doing soon but my most bleugh bit is white fluff over my face…ive never had facial hair before and am now feeling like a bearded lady!! Anyone else? And how do we get rid of this?!
I went to an epilepsy charity do sat night, made a change from breast cancer things!, a woman next to me, I didn’t know, actually stroked my cheek fluff! Pretty sure thats not ok??!!
Hoping everyones aches, leaking scars and moods are improving…lets try to get festive?! (Yho not feeling it myself!)
Yes im up for a WhatsApp group…
Shall we start sharing numbers? Ill go …07584090822…
@nicd I’m sure stroking cheek fluff is not acceptable I’ve attached a pic of what you need - I speak from experience
Re the WhatsApp group. Would it be easier to send mobiles to one person who can then set up a group and add everyone? I’m happy to try and sort it. Is it easier to post numbers in here or just send them to me to add to the group? We also need a group name - any thoughts?
I will reply properly another time, just caught up from days away but was chuckling to myself about potential WhatsApp group names (which I’d love to join)!
A couple of suggestions from me to start with…how about ‘The Titty Committee’ or ‘Breast Friends’…
I don’t like this new normal. Nails look awful but luckily aren’t lifting but neuropathy in my fingers is still there and I drop everything. I’ve become terrified of drinking alcohol and I think of reoccurrence continually. I hope I find a bit of Christmas spirit soon. I think I’ll start to feel a bit better when I look in the mirror and don’t see an old man looking back at me. Sorry everyone I didn’t know I was going to be quite so down when I started the text.
meanwhile I will wear a wig and pencil eyebrows and have false eyelashes. I just laughed to myself.
. Hugs to all xx
for you xx
Very grumpy too.
People are always saying how strong I’ve been but I tend to brush it off and say I haven’t, you just don’t have a choice but to go through it all. However, maybe we should accept these comments because actually we’ve been through and are still going through a lot so maybe it’s right.xx
I’ve already got loads of joint pains and stiffness, no idea why, so I don’t want more!!
I did ask about some chaffing feeling under my arm where lymph nodes removed … he said it was my nerve endings not actually chaffing, which makes sense as it’s not red and when I put some cream on it made no difference whatsoever!!
I’ve attached a pic of what you need - I speak from experience 