Hi
Fi Millin
Have you had an mri since diagnosis
I have had one to check the good boob and because of my age
My other breast was fine ?
I found it bearable noisy
But the dye they used made me feel as though I had wet my knickers ?? I hadn’t but apparently this command and they didn’t tell me about this xx
Oh Aneeebel, I’m so sorry to hear you ended up in hospital with an infection! How rubbish! Good to hear that it is now sorted and you’re feeling a little better. It’s so hard to know whether or not to call the chemo line! Fingers crossed the rest of the cycle is kind to you. One down already! ??
Regarding timing of chemo starting after meeting with the oncologist, I think it can be very variable. I was scheduled to start within a week, but then had a fortnight of delays due to post-surgery complications. I had surgery (mastectomy) first - invasive tumour didn’t show up well on imaging scans and they already knew I had two separate sections of widespread DCIS so no other alternative for me, surgery wise - and was advised to have an immediate implant recon. Unfortunately, this subsequently became infected, resulting in the need for further surgery to remove the implant. Lack of clear margins, lymph node involvement and ER-/HER2+ status meant they wanted to start chemo quickly. However, it was explained to me that it was far more important that I be fighting fit and free from infection before chemo started - otherwise the risks of complications are too high. What I am trying to say, in a very ineloquent and convoluted way, is that there is no one best approach to dealing with all of this. We will all have slightly different treatment plans and will react to things a little differently too. As long as we are receiving excellent care and support throughout, we can get through it. I was told that, despite them wanting to start chemo ASAP, a week or two wouldn’t make any real difference. I hope that provides a little reassurance!
I hope everyone who has started this month is feeling ok, and I wish those who are about to start the best of luck. We can do this! ???
Hi Mai7i have just been onto your blog and wow you really hit the nail on the head with how you feel after diagnosis
This forum is truly amazing , makes you know your not alone xx
Hi all, OH Yes, forgot to mention the feeling of wetting yourself when having the MRI… nobody warned me… I I lay there thinking how embarrasing it will be when I get out of the machine dripping wet… only to find I hadn’t but be prepared you really feel like you have!
As for those of you possibly facing a masectomy… I had one in May (before chemo) I opted to remain flat (not everyones choice I know) and the surgery was so straight forward, I had the masectomy (single side) and SNB done at the same time, was in surgery at 9am and home again by 3pm on same day. Very little pain, no stitches to remove, just glued and one long strip of dressing. I did have a drain for 3 days but was painless and easily removed at home by nurse. By 2 weeks post op I was back driving, working and had pretty much full movement of arm, keep doing the exercises. I now wear a “knitted knocker” prosthesis, which you can get online for free and are lovely and soft and look really good. I am very small chested anyway (only an A cup) so not to difficult to match my knitted side to the real one and I have to say I don’t feel strange at all. You can get some lovely underwear, I get mine from Asda online but M&S do some lovely stuff too. When making a choice over surgery, look at all the options and ask lots of questions… only you know what is right for you.
Kip
xx
Hi
I’m doing ok
Awoke at four
Nerves do funny things to us
Meet oncogist this morning , for me it’s the in known I deal better when I know
Having a rough time and feeling very angry with my sister
She has always been quite selfish and life has always been about her
Unfortunately the rest of my family stopped speaking with her , but I keep thinking she will change
I’m wrong
Not even a call or a message to see how I am or how my results were last week
And all though my family say what did you expect it still hurts
I wish she would change , she is like it with her own children so I shouldn’t expect anything better
Yet I’m still the one sat thinking if I walk away and stop caring she will have no one xx
Katyday it is al about you at the moment. You need to concentrate on yourself and your own recovery. There will be lots of time for you sister in the future, and it is her loss not to be involved with her family, not yours. Don’t waste your energy on her when you need it for the bigger battle ahead.
Good luck with your appointment today. You will feel much better when you know the plan. Lots of love, Kxxxx
Thank you and I know your right xx
Thanks Fiona
My husband is coming
We lost both our parents and for me it’s about only having my brothers and sisters
But I agree it has to be about me now
Xx
Morning - I’ve been reading through this thread and found it really useful. Thought I would share my journey so far.
Having had two lumpectomies and lymph nodes removed over the summer, my first chemo session was on the 5th October - I am due to get 4*EC and then 4*T, one every three weeks, and once that’s over a mastectomy and radiotherapy. If anyone is still to start a couple of things that I thought made the first session easier for me .
Visit the chemo suite before you start, it is good to know where you will be. The nurses really put me at ease.
On the day of my first chemo, I arrived at the suite and was so surprised at how calm everything was - everyone already started treatment looked relaxed, reading, listening to music, chatting to friends…it really calmed me down.
Keep you arms and hands warm - chemo can be given in a number of differnent ways…if it is going to be through the veins in your hand make sure they are warm so the veins stand out more, this makes it easier.
I was told to expect to ‘feel’ the treatment going through my body, so I was ready for a bit of a strange feeling which quickly subsided.
I know we are all different but I expect most of us will have been giving plenty of medicines to take home. I must admit I wasn’t expecting to be given so much and I think it can be a little daunting as you are given the instructions whilst still being given the chemo. I ended up with steroids, two anti-sickness tablets and injections to boost white cell count…all to be taken on different days and at different times…plus learning to inject yourself. The lady next to me had the same and more. I decided to make a chart at home to keep track of everything which now includes - date of blood test, date to see consultant, chemo date, medicines to take. As well as keeping me on track I want to use it as a countdown to getting through all of this.
Went home from first session and felt great and decided to go back to work. By the 12th though I started to feel really tired and on Saturday I was running a temperature and was admitted to hospital. White blood cell count is really low and there are signs of an infection. So they have given me lots of antibiotics and they want my blood levels to be above a certain level before I get home. Been here three nights so far but hoping they will discharge me this afternoon. I’ve got to say being admitted on Saturday really threw me as I had been feeling so good up until that point.
So now a bit worried about cycle 2 and what that will bring - any advice?
Hi Murphy. Welcome and thanks for your input! I would say take each session as it comes. Just because you have had the pleasure of Casa NHS this time doesn’t mean you will next time! Perhaps you should avoid coming into contact with sources of infection during the danger days (5-12 I think). I don’t know what your work involves, but you are better off limiting the germs to those you are familiar with if you can.
Well done for getting through so far, and remaining so upbeat!! Lots of love to you. Kxx
Hi all
Well it went ok I know I will sart within two weeks just not sure when in that two weeks
I will have four e-c then four t then four and half’s weeks radio
On top of that
My job nursing home manager and I had cqc inspection and got told it’s one of the best homes they have been in
So that was the best pick me up xxx
Kateday, it sounds like youve actually had a good day. You know where you are with your treatment plan and CQC is amazing. My stepdaughter has her own care business and has just achieved CQC registration, so well done, tremendous effort.
? Fiona xxx
It has given me the pick me up I needed
The care sector is a very difficult carer but well worth it cx
I can understand what you’re saying. My stepdaughter has been in the business about 10 years and still wants to do it. I couldn’t but fair play to you all who do. ?
Hi Lennie, just to confirm reddi’s comments. It is probably best to avoid crowds and sources of infection between days 5 and 14. ‘Familiar’ germs should be ok, but do be careful with the little ones as they are exposed to multiple germs, which is good for them but not you! I am a teacher, so have been unable to work st all on chemo! Enjoy the babes the rest of the time!!! Kxx
Sorry lebbie. Autocorrect!!
Morning Murphy. I was on FEC, but I found the SEs pretty consistent on each cycle. If anything a bit easier as you knew what to expect.
Sorry to hear about your scalp, but it is time to say goodbye?. You will find that you lose strands st first, and this will increase to handfuls at a time. After a few days I had a shower and left what looked like a small animal in the tray!! Although there was still reasonable coverage on my head I decided to brave the shave at that point as I couldn’t put up with the sheddding. Good luck with whatever you decide to do. Some of us June ladies posted picks of our new bald look!! Kxxx
Loosing my hair wasn’t as bad as loosing eyebrows and lashes! But that didn’t happen until T2. Have you booked a Look Good Feel Better course yet? Great fun and well worth it!! Kxx
Hello Ladies
Well I’ve finally got to the chemo stage, which starts on Wednesday, seeing the nurse tomorrow (Saturday).
It’s been 11 weeks since surgery and apart from a minor infection 3 weeks after surgery in the lymph node scar, I’ve not been too bad, even the slight discomfort under my arm is hardly noticeable now.
I’m having a pick line and know I’m on Taxol and anti sickness drugs, until tomorrow I won’t know much else. I’m a bit confused about the sessions, I don’t think I took in all the oncologist said and my hubby clearly got it wrong, according to my nurse on the phone, the treatments will be 21 days apart, which makes it a Wednesday and that includes boxing day by the looks of it.
I’ve kept busy decorating and sorting the garden, but I am apprehensive and even the thought of seeing the nurse for all the pre-chemo stuff tomorrow, is making me nervous.
Thank goodness for all you lovely ladies, it’s only me and hubby and I have a couple of close friends, but I would be lost if it was not for you all and the help and advise.
Thank you Reddit
I’ve tried to keep busy so my mind does not think about the chemo, but of course, it’s always at the back just tinkering with me enough so I can’t completely forget.
Could you tell me what fec is please?
Can you ask to see the chemo unit before treatment do you know?