thanks CDC - I’ll be ringing it loud and proud and as have my children and hubby coming too so its a real family affair.
I;ve done it and rung the bell, very emotional! Smiling all over my face today…
Good luck to all still on the journey… love to all
Kip
xx
Great news Kip! Well done and I love the picture, beautiful kids and your hair is looking great, very trendy! X
Hi everyone
Such good news Kip!
Sorry I’ve been off the radar. It’s taken a lot of mental energy to get over the response to my complaint. Thankfully talking with my therapist has helped and feeling stronger now. Im determined to fight on for recognition that alternative screening options should have been offered to me over the last 8 years as my very dense breast tissue was noted from the start and I have a high familial risk. I also want to see a change in policy for others who are also mammographically occult. Interestingly I Spent all day at the Marsden today and got talking to a woman in the general oncology outpatient waiting room. We discovered that she too is mammographically occult, then another lady overhead us and joined in and incredibly a fourth!! All of whom had not had their tumours picked up on mammogram!! It was incredibly sobering as all 3 now have secondaries. Very upsetting but as one said,’ I just consider it as a chronic condition and get on with my life’.
One lady will be having her op 4 days before mine. I’ll be having a double MX with DIEP reconstruction on the 14th Jan. plastic surgeon helped me decide that a DIEP using tummy would be more suitable than the thigh TUG as the latter has more chance of delays in healing due to the scars being in the groin becoming sweaty and risking infection when you go to the loo! The team I met today are lovely. Can’t get over the difference friendly and caring staff have made. They even fitted me in to have my pre-op assessment today so I don’t have to go in so much over Christmas. I still need to sign consent form and mèet with the surgeon doing the mastectomy part but I feel like I’m on the home stretch. I have been asked to take part in either the Monarch E trial or a new one called the Natalee(?). I would continue on tamoxifen but would also take a class of drug called a cdk4/6 inhibitor currently used for treating advanced stage ER+, HER2- BC. I’d be part of the trial for those with early stage BC but with a high familial risk. It means a lot more monitoring over the next 8 years but could potentially reduce my risk of getting a local recurrence or another BC again.
I really do need to get some sleep but I have been thinking of everyone and sending hugs. Xxx
Thanks for the congrats everyone. Woken up feeling very emotional and a bit adrift but hoping to fend off the worry gremlins until at least after Christmas.
CDC - Good news about the operation, glad you are feeling happier with the nice staff you are meeting, makes such a difference too. Unbelievable the amount of ladies you have met with occult diagnosies. Your option of the trial sounds interesting too, I have been asked to particpate in one called “Add Aspirin”. Its for early stage cancer patients to add potentially either 200mg, 100mg or placebo daily to assess whether there is proof that taking this helps to stop reoccurence or lengthen the time before it happens. I have some reading to do before deciding. Anyone heard of this?
Kip
xx
Thanks Kathy, the more information the better before making a decision I find.
Kip
x
CDC glad you have got everything planned now for your op. I think you are very brave! Have a fab xmas. I am on day 5 of 20 rads sessions. I hope you are not offended by my messages but was just trying to help. Love Linda xx
Hi CDC, the Add Aspirin trial sounds like something I would like to do. I have to read up a bit first, but you get given a low dose of Aspirin for about 8 weeks to see if you are compatible with it and have no problems, if thats ok then you get randomised for either 100mg 200mg or placebo. You have to have 12 extra appointmnents at the hospital over the next 5 years I think, they like to monitor urine, bloods and if it is stored, a piece of the original tumour. They have done some research by using a group of over 70 year olds and monitored them but they were not previoius cancer patients so they are now looking to see how the effects of aspirin could reduce the possible reoccurrence or delay it so they need hormone positive breast, bowel, prostrate and oesophagus patients. The listed side effects are those of taking aspiring, so bruising, blood thinning, indigestion… so not too many. I will do some more research and let you know what I find.
After the exuberance of finishing active treatment on Wednesday its been a funny old time. Not sure how to feel. Had a quite restless night with the achey hips and back and kept worrying about bones… made the mistake of googling yesterday… never good and I should know by now not to. Its hard when everyone around me is saying “oh you must be so pleased its over with”… and inside I’m thinking… its never over with though. Just hope time will make it easier… that and some relief from these aches and pains. How are you knees now CDC? Enjoy those biscuits, chocs and tunnocks… musn’t let that tummy go to waste!
Feenix - glad you are feeling a bit better now and getting the exercises going agaiin.
Kip
xx
Hello everyone, I’ve just been catching up with everyone’s news.
Glad you are feeling better after you fall Jean, keep up the stretching and hopefully you’ll be hooping again soon!
CDC I’m pleased to hear you are receiving a better service at the Marsden and that the staff are generally more caring. It’s certainly what is needed in these times. I bet you are pleased to have a date for the op even though you are bound to be apprehensive at least you know what the plan is and you trust your team. That really is surprising the number of women who’s tumours aren’t picked up on mammograms. No one has ever mentioned I have dense tissue so presumably I don’t? It makes me worry about picking up any recurrence. Yours and Kips trial sound interesting, and a real positive being monitored for longer. Obviously SE’s are a consideration although the aspirin trial SE sound quit minimal Kip from what you say. I read a bit on the research and it is ER+ HER- so probably not much benefit to me as low ER+ and HER+.
I find it strange reading some of the things you have written Kip as they are thoughts and feelings that I have also had. I guess we might feel like we are on our own with our feelings but actually are going through very similar emotions. I am 5 weeks post rads now and much more emotionally stable ie crying a lot less! Than I was at weeks 1-3 post rads. I have had 2 counselling sessions now but the second one was a bit of a waste of time as it was just with the trainee and I just don’t think he ‘gets it’ like his more experienced supervisor.
Tamoxifen on the new brand seems to be going ok, but I am going to try and stick with one of the two I have been given so far. Fortunately I’m not suffering with the aches like you are Kip, I hope they ease off for you soon.
I had a bit of a worry the other night when I felt a lump. Fortunately the following day I was at the hospital anyway. They were very good and squeezed me in although I had to wait a while. They said they take everything seriously and I shouldn’t ever hesitate about seeing them which I found very comforting. Anyway the lump it seems is scar tissue thankfully but she said if it has changed at all when I see my onc in January they will US me so I feel ok about it. The nurse also explained it can take quite a while to feel better after rads, my breast has been very tender and bruised feeling.
Well that’s all my news except we are going on holiday on Sunday and guess where we are flying from?! Oh yes Gatwick, so fingers crossed we get there. That would just about top off this year! X
Happy holidays Michelle hope you get away on time! Its good to know im not alone with how i feel too. Im feeling a bit brighter today i think. Just going to enjoy Christmas appointment free! Got an appt for lymphodema clinic forr 18th jan so bit of a wait to get cording sorted but it ok.
Kip
Just wanted to wish everyone a Merry Christmas… May it be SE free and full of peace and relaxation!
kip
Jean it is no wonder you feel off kilter at the moment, I think a fall can do that to you anyway, plus the different feelings that can accompany Christmas and then factor in the emotional rollercoaster that is a BC diagnosis and it really is no surprise. I’ve noticed you can be quite hard on yourself, you are obviously a strong woman who will come through all of this I have no doubt. I hope you feel more yourself soon.
Glad you are feeling a bit brighter Kip, I hope you enjoy Christmas with your family.
Well It was a bit touch and go with the traffic on the M25 but we made it to Gatwick and no drones so arrived last night in Slovenia. It is beautiful and lovely to be somewhere completely different without the usual Christmas associations. I seemed to have started believing in anything and everything nowadays, I am off for a swim in thermal water in a min. Apparently the minerals are good for you and will be getting a boat over to a church where you can ring the bell and make a wish. I will be thinking of us all when I make that wish.
I hope everyone here is able to enjoy the next few days and that we can all look forward to a happy healthy 2019. Big love and hugs to everyone xx
Morning everyone, well thats Christmas been and gone already. Hope you all had a lovely break. i had a lovely time, even managed to put the old demons away at times although had a few tears tn Christmas Eve,. Just the usual old worries. I still have my aches and pains although not so bad, just a muscle ache in buttock and the usual old lady legs… having mega hot sweats at night though. And for good measure i lost 3 finger nails Christmas morning (thankfully not whilst cooking). The dead white end halves just snapped clean away but there is nail underneath and they dont hurt so not all bad.
OH back at work today so im having a chilled day with the children, if and when they decide to surface.
Love Kip
Enjoy the shops Feenix! Just watxhed Wizard of Oz…an oldie but a goodie… reminded me of watching it with my dad and hiding behind the sofa afraid of the witches’ monkeys!
Turkey soup made, turkey curry for tea …?
Hi Jean, Claire and Kip
Nice to hear you all enjoyed Christmas. I haven’t sent the wizard of Oz for years, such a classic! Sorry you are still feeling stiff in parts Jean but it sounds like you are gradually on the mend. Walking will help I’m sure but take it easy.
I’ve been lucky enough not to lose any nails but they aren’t in great shape. I’ve kept them short since chemo but they keep snagging on things and splitting. They used to be very strong. On the plus side I think the last of the chemo nail is at the top now (it’s only taken 5 months!) so hopefully they will start to improve.
Claire I Hope you have enjoyed your Christmas and haven’t beeen thinking too much about your surgery.
We got back from Slovenia a couple of days ago, it was fantastic, so beautiful and a great distraction. It stopped me thinking about previous christmases and this year to an extent but I have realised there is no real mental escape from all of this, it sits at the back of my mind casting a small shadow on things. I have noticed I am more open to superstitions/beliefs and not my usual cynical self. On holiday I have rang a wishing bell, thrown a coin in a lake and made a wish, sat in churches saying little prayers and seen ‘signs’ in things I wouldn’t normally have paid any attention to. Maybe this is what’s meant by ‘a new me after cancer.’
Physically I think the herceptin is starting to take it’s toll, I am more breathless than usual. I’m hoping that young my running in Jan will strengthen it. Also I am more tired than my usual me. Holidays can be tiring I know but I feel like I have to pick either have a busy day or go out in the evening, I struggle with both. I’m not falling asleep all of the time but just find I can’t be bothered to do stuff. Which will be interesting as I have my mum and dad coming to stay today for a few days. In my head I am my normal ‘rushing around’ self but then it comes to it and I flag! It’s my mums birthday today so we are going out for lunch when they arrive.
Happy New Year to you all and thank you for being such a great support xx
Hi all, just wanted to wish you all a Happy New Year!! Heres to a muxh better 2019 for us all. I would also like to say a big thanks to uou all foe being there feom the early dsys, through surgery, chemo and every up and down… You are all truly amazing…
Fingers crossed for more ups than downs this year
kip
Just put up the new calendar and had a flick back through the 2018 one… Full of horrendous reminders… Especially the one back in March… I’d marked it as `shopping’ so that the children didn’t know anything… Seems a different lifetime and I guess it was… Oh well no looking backwards got to look to the futures.
Back to work tomorrow and time to shed this weight… Still go a shed load of chocolate though ?
Hello all you lovely ladies and here is hoping to many, many more ups this year. It was March last year when I had my fateful shower and felt the thickening which heralded the start of a tumultuous year. I’m sorry I’ve been a bit quiet but been struggling with my emotions. I didn’t feel nervous before my last two ops but there is just something so final about a mastectomy- However, you all give me hope and in many ways ‘final’ is good. Hopefully I’ll feel more relaxed knowing I’ve ensured my chances of getting BC again are minimal. Thank you so much for your honesty and openness in sharing your experiences.
Linda, so good to hear you’ll hopefully be finishing treatment very soon. Fingers crossed you’ll soon be holidaying in the sun! We all deserve a b***dy good holiday this year!!
Kip hope your return to work goes smoothly. You’ll have to share any weight loss tips- I’ve put on a stone over the holidays so my plastic surgeon will be happy I definitely have enough tummy for two reconstructions now!!! Only trouble the weight has also gone too my hips. I’ll be a complete pear by the end of treatment. ?
Jean I hope you’re not feeling as sore. Good you got out for a walk but definitely agree going with the flow is the right way to approach things. I was so down a couple of days ago but realised it was my body’s way of saying ‘’enough’s enough. You need to rest’. It’s been lovely catching up with my family over Christmas but it’s akso been exhausting. Not sleeping properly either which doesn’t help. On a positive note, apart from my dodgy knees and some hot flushes, I seem to be doing ok on the tamoxifen. I will be interested to see if the joint pain lessens over the next couple of weeks as I have to stop taking it before my op.
Take care everyone. Sending hugs to you all ???xxx
I was also diagnosed in March, what a horrible time that was. I still find it difficult to think back to, the feelings are still very raw. However this is a new year, onwards and upwards with lots of up hopefully!
Writing diaries, calendars and planning ahead things we really want to do seems to be a theme. The saying dont’t put off till tomorrow what you can do today really chimes with me now! Just do it! I’ve set myself a few challenges for next year, you already know of the trek I’m doing in February but I have also signed up to 4 10k’s and 2 half marathons! Training started yesterday with a beautiful 5k along the seafront. I’ve also put on lbs so hopefully getting back to running will help with that aswell as giving me the feel good factor.
Claire I was terrified before my surgery but I think the apprehension is worse than the reality. Sending lots of positive vibes to you, after surgery you are closer to the end of this horrible process.
Thanks for your kind words Jean. We did have a good time for my mums birthday, are you a Capricorn too? When is your birthday and do you have something nice planned?
I know my mum will go home feeling like she has her daughter back and I am definitely in a much better place now however I do feel I have made a decision to project that I am back to ‘normal’ when in reality there are still so many worries. Perhaps if I carry on like this I will believe my own hype!! ?
I used to be such a great sleeper but now find if I am often lying awake in the early hours. Not always worrying but just going over stuff in my head.
Kip good luck with work, I think getting back into some sort of routine can do wonders.
Have a good day all xx