Hi everyone - do hope all are doing ok and feeling much better.
I had my post treatment review and all is fine - was worried as thought I could feel something in other side, so worried unnecessarily , as all ok. Re ‘morning sickness’ / nausea - was told to try and take the Letrozole at night instead of the morning and no problem to taking the Domperidone if I feel I need it. Chest much better - have had a cough for about 8 weeks or so now, but last week felt very unwell and pain on inhalation - saw Dr and got chest infection and Pleurisy - much better now with the antibiotics. Mammogram in November, and appt for BCN in 2 months ( or before if worried on anything ) to discuss any worries / support required. All in all, just excellent customer care . Feeling EPIC after this long journey . Sending hugs, thanks and best wishes to all. Mechele X X X
Hi Everyone
Pleased everything was ok with your review Mechele and Clare sounds like you are doing amazingly well.
I have my last radiotherapy tomorrow and I’ve decided I’m definitely ditching my wig too. I’ve found rads a lot harder than I thought I would, I ended up getting a cold last week and it totally knocked me. I’m feeling a bit deflated too as I had to have a ct scan to recheck a nodule on my lung that was picked up when I was diagnosed, I got the results yesterday and it shows it has grown by 1mm so they have decided to do another scan in 2 months. I feel like my treatment has been extended by 2 months whilst I wait for that. The BCN said it could be that 2 different people reported and measured different, the nodule isn’t a worry because lots of people have them, it’s if it’s growing that it needs investigating.
I’m so looking forward to finishing active treatment and trying to get my body back to feeling ok. I hope everyone else is well. I enquired about doing a stress management course at our local Maggies centre. Has anyone else done one?
Lots of best wishes.
Debbie xxx
Oh Cassy! I’m surprised you managed to hold it together in the doctors surgery!! Honestly it’s bad enough we have to take the rotten tablets let alone have to jump through hoops to get them! It really isn’t silly that you got upset once you got home - I image it was frustration as well as pent up sensitivity still from everything we’ve all gone through, so don’t feel bad!
Yesterday I had an appointment with my kidney consultant as I’ve had chronic kidney disease for a few years now (good news is it’s the best it’s been ?) and he asked me how I was feeling and in telling him I felt pretty bloody rubbish, I very nearly burst into tears!! So don’t be harsh on yourself. It’s great we can drop in on here still for a good rant!!
Love Kim xxx
Hi Everyone, good to hear from you Fiona. I hope the rads go smoothly. Don’t worry too much about the hip and back pain. I have had the same forages ( long before bc) it’s arthritis and was prob due to years of riding and skiing! I’m sure yours will be ok too.
Had my first post treatment follow up with the lovely onc today. All good and she said.l I look really well and I have a very good prognosis! She even said that as my hair is thick and strong I can dye it and even go blonde again!!! I don’t have to see her till December now.
Big relief. I was nervous about seeing her and walking back into the hospital brought it all back!
Love and hugs to all
Claire xxx
Hi! Had my follow up appointment with my oncologist today too - the main one who is lovely and knows her stuff!!!
She’s happy my aches and pains and general stiffness of the joints are Anastrozole related not anything sinister and as I can manage them without any pain relief generally all’s good! On the less good side, the recommended treatment when on Anastrozole is also to take a daily Bisphosphonate (If you’re on Tamoxifen then that protects your bones from pesky rogue cancer cells anyway) so she’s writing to check that my kidney specialist says it’s OK. I’ve been prescribed a weekly one which is for the effects of osteoporosis but doesn’t protect against bone cancer (wasn’t aware this could be an issue until today, but I’ll take anything to help protect myself from anything returning!!). The pain is that apart from the dodgy side effects (irritating my asophocus - how ever that’s spelt!, attacking my jaw and affecting my kidney function) you have to take it first thing in the morning, with a large glass of water and stay sat upright for 30 mins before being allowed to eat or drink anything else and then you can lie down again! I was just coping with doing this in a Sunday, but daily is going to take some planning as my husband has got in the very good habit of waking me by bringing me breakfast in bed every morning - a plus side of having chemotherapy for all those months!
Makes the fact one of my nails split and broke off a 1/4 way down pale into insignificance! I guess I’ll get used to it ?
I’m not brave enough to ditch the wig yet, although I’m happy that my hair is growing back well. Will wait until I can dye it before I do. I don’t wear it around the house and garden, and don’t worry about answering the door without it ? I’m happy in my wig, which I never thought I would be!
Pleased all went well with you today Claire, I have a phone consultation with my oncologist in 4-6 weeks once she’s chatted to the kidney specialist to sort out my new tablets, then I see her again in 12 mths time. Was surprised because I assumed I’d be signed off from oncology (don’t know why) and just have appointments with the surgeon and yearly mammograms …
It’s great to hear from you all still ? Sorry if I’ve rambled on!!
Take care xxx
Hello all, sorry I haven’t checked in for a while, have been busy back at work trying to get back to my new normal and spent a week in Spain on a family holiday. I see a few of you have also had a holiday, very much needed after what we’ve all been through!
Five of my fingernails have broken so far, though there’s new nail coming through underneath, eyebrows are back and my eyelashes are growing really well, my head hear has thickened and is no longer patchy so I’ve now started to go out without wearing a scarf, a bit daunting at first, but now I’m used to it!
I was doing well with being positive for my future prognosis, however last week there was some sad news on one of the FB forums I’m on, which has lowered my mood and positivity and my anxiety has increased. I’m now hyper aware of every ache and pain and keep imagining the worst, so much so that I’m now worried to have my bloods taken tomorrow at my pre-op for my mx next Thursday. A lot of my worry also stems from the time when one of my liver bloods were high after I was admitted to hospital after my first docetaxel, even though all bloods were fine for the remaining two treatments and the oncologist said that the high reading would have been my body reacting to the chemicals and that she wasn’t concerned, also the liver u/s was clear, I can’t help but wonder what if they’re wrong. Sorry to be so negative, my husband is losing his patience with my anxiety over it all. I’ve had a chat with the Bcn and she says its normal to worry like this and that nothing I’ve told her gives her cause for concern, however I feel as if I’m driving myself mad and the thought of worrying like this forever is draining.
How are you all coping with the moving on? Sorry again to be so depressing xx
Hi Sissy, I think we can all relate to what you are saying and coping with the fear of it returning is going to be so hard for us all. I’m in a fb group too ( the same as you I think) and every time I read about someone with secondaries it lowers my mood and makes me very anxious. I am thinking about leaving the group so it doesn’t come up on my news feed. I keep thinking if it has happened to these other people then it might happen to me too.
I’m hoping the moving forward course will help too.
On a positive note we are all getting better everyday and I certainly feel really really well.
Good luck with your next op. That can’t help the anxiety either.
This is the place to find others who understand. It’s difficult for family members to really get it.
Lots of love
Claire xxx
Thank you Ellie and Claire for your replies. When I’m at work or busy out doing things I’m a lot better. Last night I went out and had some fun and didn’t think about aches and pains at all. I think once I have the pre op done tomorrow I’ll feel better about things.
Ellie, It’s interesting what you said about doing what we can to prevent it coming back. I’m starting back with exercise again as I need to get my fitness back on track for work, and I’m continuing to eat the fruit and veg etc. Next weeks mx will reduce the chance of it returning in my remaining breast and then next year I’ll probably have my ovaries removed.
My husband keeps saying that I need to just trust what the Bcn, oncologist and surgeon have told me. whenever I’ve asked them they just say that all cancer was removed during my first mx and ANC, that the pet/ct showed no rogue cells or spread, that the chemo and rads was belt and braces, and that as far as they’re concerned all the cancer has gone.
I’m strangely looking forward to my second mx as I’m fed up with being lop sided, I’m worried that something will go wrong in my pre op and I won’t be able to have the op.
You’re the only people who really understand these feelings xx
Thank you for all of your supportive replies, it helps to know that it’s not just me who has these worries and dark thoughts.
My pre-op was fine. Ecg all good, guess my bloods were okay as no one has called to say they weren’t. It would seem I’m still first on the list for tomorrow’s op, and in theatre 5, which is my lucky number! I feel no where near as anxious as I did before my first mx, as at least I now know what to expect operation wise, and I’m hoping it’ll all be much the same as before, though as I’m not having ANC this time, hopefully the arm won’t be so sore. This may sound strange, but I feel a little excited to be fully flat.
My bag is packed, have bought some new lightweight button up pj’s, slippers and a new lightweight dressing gown, iPad is fully charged as is the kindle. Just thinking of what to wear home as need something that I can button up. Last time I wore a tracksuit, however it was in the winter and a lot colder. Fingers crossed that the drain will be removed before I get home like before. I’ve spent today giving the house a good clean in readiness as well.
Met with the Bcn last week and tried on some new prosthetics. I’m currently a gg cup which has been a pain with trying to find bras suitable for prosthetics, so have decided to go a few cup sizes smaller and am looking at a d or dd cup size.
Fiona, glad you’re nearly done with rads. I was quite tearful on my last one, and it’ll be nice for you to not have to visit hospital every day.
I hope everyone else is well any enjoying the nice weather we’ve been having. I’ll message tomorrow once I’m back on the ward. Sissy xx
All done ladies. managed to hold It together until the pre theatre anaesthetic room where I had a few tears asking them to make sure I didn’t wake up during the op, lol, but I was out after around an hour and I to recovery. Recovery area didn’t go to plan though, ended up spending 6hrs in there as the bed I was allocated wasn’t ready because the person who was in it was reluctant to vacate. Felt sorry for the nurses where I was as they felt bad for me. Because I was in recovery they still had me hooked up to things so if I wanted a wee it had to be in a bed pan, not very dignified. They also had to put the cannulater in my node free arm as they couldn’t use left arm as that’s where the mx was taking place and they didn’t want to use my feet. I did query this with anaesthetist but she said the needle wouldn’t be an issue as it was sterile etc, and that it’s the pressure of taking blood pressure that would cause problems, so they’ve been taking that from my leg instead.
Well done Elizabeth with getting through rads! Regarding bucket list, I haven’t written anything down officially but i do have a list in my head of things I want to experience and places I want to go, also want to be more spontaneous with plans so have booked to go to Spain for three nights in October!
I’m feeling very well at the moment. Left hospital at 1pm on Friday having had both drains removed. Haven’t really been using many pain meds, just a couple of paracetamols here and there. I feel a lot more capable compared to how I did after the last mx which also included ANC. Managed to get dressed today and sat in garden with family when they visited. Have been doing a bit of online shopping for some new clothes as some of my tops will now be too big as I’ll be having smaller prosthetics and sometimes will be going out fully flat.
How is everyone else? Ellie, I’m glad you’re getting your energy back but sad to hear works not been good. Xx
Well done Fiona! It’s a nice feeling to have it all done, enjoy and make sure you take it easy still for a bit. I’d started exercising a couple of weeks after finishing rads, getting the motivation to do it is the hardest part I think!
I need to lose a few pounds and sort my stomach area out, since my second mx my belly looks to big against the flatness of where my breasts were!
I hope everyone is well and getting on with things. I’m recovering well and itching to get back to work! Have been researching things for my Vegas holiday in November and today booked for James and I to renew our wedding vows at one of the chapels, something else off the bucket list, lol. Need to go wedding dress shopping! Xx
Hi everyone!
I’ve been reading your updates but not listed for a while so not sure if I’ve congratulated Elizabeth and Fiona for finishing rads - well done ??
Have been on holiday to the Greek island of Santorini for a week - it was wonderful! Sunny, breezy and very relaxing. The wig stayed at home which was very liberating especially as I wasn’t having to style and straighten my hair every day which is what would have happened pre chemo! Just wash and go!! Still don’t like seeing myself with white/grey hair so now I’m home to wig goes on when I go out! But I’m giving it until half term then surely it will be long enough to be dyed and vaguely styled?
Had my appointment with my breast surgeon last Thurs and I’ll be having my implant changed to a smaller one probably in a years time (to suit me) as it doesn’t sit right and had possibly twisted. She said she wouldn’t want to do it for at least 4 months because of having radiotherapy and I’m happy with that, I’d like to get a full year in at school if possible before I’m off for another 6 weeks on sick leave!
Seeing her again end of December plus my first mammogram is coming up in November …
Hope you’re continuing to recover well Sissy, and Ellie, I hope job hunting is also going well ?
And everyone else, hope you’re all happy and doing well too!
Love Kim xxx
My hair is similar length and colour to yours Cassy but curly which it was before but I always straightened it. Need to charge up my iPad to see if I can post photos using that - can’t seem to on my phone even tho it’s an iPhone.
Well I’m struggling a bit mentally, feeling a bit teary and low which I’m hoping will pass. Trouble is even though I’m back at work (school) which is nice and busy so my mind is occupied, it’s the daily looking at my grey hair, reconstructed breast, lymphoedema arm and daily medication and achey side effects, which means it’s impossible not to think about the implications of having breast cancer. Tomorrow is the anniversary of the first routine mammogram appointment Ivwas given but rearranged because we were on a school trip. ( I know the delay didn’t make any difference and infact it meant I wasn’t having chemo over Christmas and I got to be a Jan chemo starter with you guys which has been good ? ) but I do wish I could go a while without thinking about it!! I’m sure this will pass but just needed a bit of a moan right now before I head off to bed - might help me sleep getting it off my chest!
Hope you’re all in a good place at the moment tho ?
Xxx
