Its just good to hear from you Lynda and know you are doing ok well within reason as well as you can be going through what we are.
Evening JJs
As Piggsy predicted we had Brucey bonus tonight, and he wasn’t funny at all!
BOF thinking of you, hope the aches and pains ease off soon.
Chezz thank god they found out of blood clots before it was too late, hopefully injections work and they will melt away.
Tamsin how frustrating it is to face delays. I know you just want to get on with it. I am also counting days, after speaking to bcn and if they decide I need two further Ts then earliest for my surgery is mid December. I am not sure if I want to risk having surgery so near Xmas. Anyway, I shall keep my fingers crossed for us both.
Deb , enjoy your week off.
Kat, you should go to HK when you can. Is a brilliant city.
Lynda, Nette, whiskers, bumblebee and all JJs hope you are doing ok!
Piggsy, I will arrange for a real person in the next fantasy :smileyvery-happy:
Wishing everyone a peaceful Sunday.
Luv to all,
Mahsa xxxx
HI all
Im not up tomorrow mine is week after but thanks for thinking of me Tamsin
Good luck if Kat up tomorrow
Bumble good grief poor you and the Asda carpark. Hope you are better and the end is so near for you now you must be on countdown
BOF hoping you are coming out of the dark pit now and starting to feel a bit more yourself
Kat, will be thinking of you tomorrow. Hope everything will be OK for you. Hugs & kisses…
To rest of my lovely JJs, I am sending you a huge hug… wishing everyone an uneventful week ahead, only happy and exciting events allowed… :heart:
Take a very good care of yourself.
Luv,
Mahsa xx
FEC-T. FEC finished. T#1 Day 21 Herceptin 2 down 15 to go.
Morning JJ’s.
Early one today for bloods, onc review and cross fingers T #2 and Herceptin. Still on a’biotics but much improved which is probably down to steroids which I started yesterday in prep for the fun. Didn’t sleep but insread of coughing just buzzing brain.
Bumblebee oh poor you, I did that in the garden but thank goodness you had OH to scoop you up, my knees still look scared.
Tamsin did you get a copy of your boods if so check your iron levels, it seems to be way down on onc’s list of priorities and a supplement might buck you up and then you can do more chores!!!??
Chez how are the injections going and how often do they see you?
Hoping evryone enjoying there weekend, welll obviously not Brucie from the sound of it. We have given up on Srictley in this house, it is Downton on the sofa in Pj’s on a Sunday but saying that storyline now a bit distressing. I made 3 batches of soup yesterday with end of produce from the garden with my new wizzy thiing that MIL gave me, bugger to clean, very noisey but does what it is supposed to. Then an apple crumble, that should keep them going. So many pears though they have ripened all at once.
Hope SE keep to a minimum for all and that the last dunkers are OK
Love to all Kat xxx
And guess what I have my 1st Christmas outing I the diary for Dec 14 th : )
Kat I have to get Jose to do the injections every morning cos I cant face doing them myself. Ive got another ultrasound in two weeks to check the clots and Im hoping they keep a close bloody eye on me from now on in fact sod it I will insist. Im always too quiet and go with the flow but not this time. Good luck for today and congratulations for having a chemo free xmas ahead of you. I gotta write it off this year as will be on the weekly chemo til 6th Jan how pants is that???
Dear BoF, I am convinced that T is effecting my mental state last Tuesday T#2 day 8 I sobbed all day, I rang the unit and was told it affects your homones. After the big cry I seemed much better but during the day all the hidden fears from the last two years of double breast cancer came storming out. Most of the tears had to be shed away from OH as he just can’t face the facts. After the big sob the next day I felt much better and seem to improve day by day.
Today is T#2 day 14, we went away for the weekend to stay with daughter in Leicester, it meant that we were looked after and neither I nor OH had to cook all weekend. Lovely. I think the thrush is now settled but I am continuing with the tablets. I still have metal mouth and nothing tastes of anything so no meals out, they are a waste of money. Otherwise strength is returning and I am less worried.
Lots of you have had a really horrid week . Wanted to take notes and reply to you all individually but I think I have waited to long. We are into my week three so I think a number of you are down this week. In truth T#2 has been a little easier than T#1 despite the weeps and being completely legless during days 4 to 8 and still sleeping on and off all day till day 10. Good luck all of you.
Some of you make me a shamed to ever moan but unfortunately we are all fight individual battles as best we can and if someone elses battle is harder it does not make our battle easier. Thank you forum for being here.
One point, is injectable heceptin postcode lottery. I was not given it last year as my HER2 was classed as too small to warrant treatment over the mastectomy, but I am sure my neighbour is having it injected and she has been on heceptin since the beginning of this year. Maybe it is a question you can ask?
Big big hugs to everyone being dunked this week. Warm hugs to everyone with colds and flu. To everyone struggling with bloods check, I think all you can do is eat more veggies particularly dark green and bright colours and get plenty of rest. Everyone seeing onc, consultants, bn, having tests get in there take written down questions and give a copy to person you are seeing so they can read your concerns it does work.
Nette x
I hadnt thought of the chemo attacking the neural pathways too but thats a good point
I have already established that Im gonna feel more anxious when treatment is over. As I tried to explain I feel like when someone close has died and you go on autopilot because you have to arrange funeral, clear house out etc that you dont get time to grieve. Its when the funeral etc is over and people are expecting you to go back to normal that the grief and meltdowns set in. That is how I feel with this on auto pilot just making it through til next appointment, crossing chemo dates off the calender etc when it all finishes gonna be a wreck
Tamsin you made a very good point, and Chezz your example is spot on. I do believe our emotions will get worse before it gets better.
Unfortunately, I have no date for surgery, nor I know what type of surgery I will have. Most likely will be a mastectomy, what they tried to avoid and hence put me through neo adjuvant chemo. I will find out on weds whether they will want to go ahead with remaining two Tax or refer me back to surgical team. What amazes me is when you go through chemo b4 surgery, surgeons don’t even check your progress! Well, at least not at Royal Marsden. Once I know what’s gonna happen, I would need all your advise and experiences regarding surgery. I am quite anxious.
Anyway, I am happy to have you with me on this journey. :heart:
Wishing everyone lots of positive energy.
Luv,
M. Xxx
Tamsin, you are a superwoman too… :heart:
Take a sleeping pill tonight, you need to get some sleep.
Xx
Take the sleeping tab.
If it helps my sister had a mastectomy and after chemo and radio a reconstruction taken from her back 6 years ago.
I had an immediate pedicle tram reconstrustion after my left breast mastectomy last June.
And a right breast mastectomy this May. I am not going for a reconstruction on the right side.
So I have quite a bit of surgical experience.
If anyone wants more details I am happy to be as honest as I can.
Nette x
Crikey you sound like me Kat, I only had 2 EC, now having to see a cardio doc for further tests on my heart. Just hoping I can tolerate herceptin xx xx
Gosh Kat, I am speachless in admiration of you. Chin forward you a quite obviously a brilliant, kind and resourceful woman.
Sending hugs to get you through the rest of the week.
Nette x
Kat you are a true warrior princess! Im gonna call you Xena from now on!
I start weekly paclitaxel on Monday. I know 2 other women on it who say its so much better. The SE are meant to be much better tolerated than Taxotere. If you have a line in it may be worth asking if you can have weekly instead of every three weeks as they give a third of the dose each time so SE meant to be less extreme especially if you are known to react badly.
Hope you have a lovely day and they find a way to continue with the herceptin
FEC done - T 1 day 26 (due to delay)
Hi all
Just checking in to send hugs to Kat - you really are going through it girl! The good thing is that the docs have so much experience of this awful disease that they have options these days. Stay positive 
Froggy - this treatment definitely messes with your neural pathways and hormones. I am usually upbeat and disgustingly positive (that’s how a friend describes me lol). But when my hands and feet were playing up I cried any time someone asked me how I was and I blubbed all over my onc and her assistant. That is definitely not me. I have also started to have the nightime worries and dark thoughts, which again is not me. Just remembering that it is my hormones and not me helps
Had my clinic appointment today and have agreed to do the reduced tax and see how the hands and feet go this time. ONC also asked me if i would take part in student doctor training to help them understand the chemo/surgery/rads process from a patients perspective. They get to come to appointments with me and ask for my feelings/worries and point of view so they have a better understanding of what a patient has to go through. Should be interesting. I guess I could do without a bunch of students asking me lots of questions but it could provide me with a distraction and I also think it is good to give something back to the system that is working so hard to keep me alive
I am back in Thursday now for my next dunking. Good luck to anyone going in this week, hope all goes well and your se’s are minimal.
Deb x
Tamsin
ASk them what the monitoring process is for detecting clots witht he portacath
Im like a dog with a bone now since this happened with mine
It does seem that not that many people are trained to access them. I have to have blood done at Christies cos nobody at Salford Royal knows how to access them! Even at Christies its few and far between
Also on all the literature I got it said it can go for 4 weeks without being flushed so you dont have to have it flushed between each cycle and yet your guy is saying weekly flushing. Why is there not a standard answer all across country??
Cardio appt over, heart ventricles ok but heart rate is very slow. Cardio doc has said the decision of whether I can have herceptin is to be decided between me and my onc on tues. She said if I do have herceptin I will have to have a muga scan after just 1 dose and will have to be watched very carefully. Jeez never easy with me is it xxxx Anyone else been through similar??? Xx
wonder if thats why Ive got blood clots then cos I only had it flushed evry 3 weeks when having chemo?
Good luck with the herceptin Julie