Hi Everyone,

Just wanted to say hello and see how you all are. Sue I was sad to hear you may need oral chemo, but glad this isn't the case now & radio will suffice. Mich the mastectomy v lumpectomy is tough. I didn't have enough fat to make my own (and I needed two) so had implants. Although they look natural and real, I do wish I could have had my own ones because it's a bit more scarring to begin, but that's them for life then and with implants you're always going for check ups and know they must be replaced at some point so much more faff. I really hope everyone is OK and know we can get through this crazy time. Thinking of you all xx

Hi Roz,

It really is great hearing from you, I've often wondered how you're getting on. I hope you are fully recovered now and back to normality. Can I ask if you're getting regular 3 monthly check-ups? I'm really worried that I won't be getting monitored but maybe that's the norm now.

Loads of love to you,

Sue xx

Hi Sue, I was told chance of recurrence is 20-30% but that drops to 10% with radiotherapy.  Hope that's accurate!

Linda, glad you don't have to have the last one, hope you get confirmation of the date soon.

Rozza, hope you're doing well.

Love to all.

x

Hey ladies,

Lovely to hear from you Rozza! How you doing?  Hope work has been ok :)

I saw the consultant today and have provisional date for my opp, 06th Apr so couple of days before yours Linda!  I'll have a mastectomy and full lymph node clearance.  No reconstruction yet, he advised its not possible at the moment and recommends delayed one as I'll need radiotherapy first.  The reconstruction is also done at East Grinstead.  

the date for my opp can change depending on how things pan out with the virus.  Really scary hey!  Did you ladies all get the texts to advise us to stay indoors?  I did some weeding and gardening today, trying to get my steps in haha!  Not event on 4000 steps! But not venturing out unless hospital appointment.

How you feeling now Sue?  I know its all very scary and a long road we are on, even once treatment has finished. I asked about a body scan but they said i wouldn't have one, unless i have any symtoms. 

Claire, sorry memory like a sieve.  Did you have a mastectomy then? 

Did you guys also watch the Su2C bake off tonight.  I balled my eyes out, so sad when you see younger people suffering with cancer :(  Think my emotions are all over the place with my opp and this virus and staying indoors etc.  

Big hugs all around 

xxx

Hi Mich

Good news you have your op date and that you will get your mx done, I'm just grateful that they have bought mine forward 2 weeks (even though the thought makes me wanna cry lol) God knows what ops will be cancelled in the future if this virus gets as bad as they are estimating!

I had a text yesterday to say stay indoors then a letter from my GP surgery today saying the same. I spent time in the garden today upcycling my mirror, I have painted the frame grey and tomorrow i am gong to give it a few coats with silver glitter paint. I was getting quite angry out there as i have lovely fields and woods over the back of me and it sounded as busy as a summers day!! Why cant people listen and stay in fgs.

I did watch SU2C, always makes me emotional, Cancer sure is ***!

Keep smiling ladies it helps get us through this crap time.

Linda x

Hi Sue, 

Yes I feel back to my old self again now. After I finished the final chemo in September, I did see my oncologist 6months later (just last last week, luckily Monday before the virus caused havoc). She said 1 check up per year now until we reach 5 years with her, and 1 per year with the surgeon as they have to check the implants for ruptures. So that's it and no regular monitoring really - that seems to be the norm. It was hard to get used to at first, having so many appointments and then none...but you get used to it. Hope that helps xx

Hi Ladies,

Mich and Linda, i'm glad you both have your surgery dates, another step nearer to recovery.

I know I sound like a dog with a bone, but the hospitals always used to do 3 monthly check-ups. It's a relatively new thing no follow-up appointment and money saving springs to mind!!! I would feel better being monitored due to the nature of triple negative breast cancer. Moan over.

Roz, how are you coping mentally? This has all taken a huge toll on my mental health and I feel more scared now than I did before surgery.

I am going to the hospital next Wednesday (April Fools Day!!!) for the marker for radiotheraphy. I really hope I get booked in quickly without delays because of the virus.

Load of love and hugs xxx

Hi Sue, 

I think it's very normal to feel this way so you don't sound like a dog with a bone at all! I've never heard of an exact pattern of follow up once we are finished and can only put it down to the fact that perhaps it's because doctors know more now and are more confident with the treatment regimes, more data etc. As every case is different I wonder if follow up is also, and is it that maybe someone with worse odds gets more frequent follow ups? I imagine that just as our treatments are all tailored, follow up is also. 
 

I was out of sorts mentally when I finished, which for me lasted about 2 months. It was only after it finished that the enormity of what happened suddenly hit me, and then I learned how brave I had been and how I now needed to put it to bed and be at peace. I realised that as horrific as it was, it could have been worse. Going to a breast cancer now moving forwards course was really valuable in terms of accepting and moving on. It taught me that we must enjoy life, be breast aware for a while, and try not to worry about the what ifs.

I wouldn't be surprised if you get called back 2-3 months after radiotherapy for a check up and from there the oncologist can shed some light on your future plan and follow up. If not you should definitely ask for guidance xx

Hi Sue

I dont think you're moaning, you have every right to feel like you do. I hope you get booked n quickly for raddiotherapy.

Well Ladies I had a date for surgery ... 22nd April then after my chemo was stopped my BCN called me and said 8th April. Had an appontment come for my pre op for next Friday. 

Today I had a lovely lay in till 9.30, laid there minding my own when the fone rang, was my breast unit asking could I go in today @ 1.30 to have my pre op,I said i think some mistake I have 1 next Fri, she replied with no Friday will be too late your surgery is now Monday as some ops are going to be cancelled in the near future due to coronavirus !!! EKKKK

Anyway had pre op, came home again having a lay down cos i was shattered when the fone goes again, this time its genetics. 

I AM BRCA NEGATIVE!!! I cant describe how shocked and happy i was to hear that! Now I just have to get myself ready mentally for Monday, doesnt help that no 1 can come and wait with me :(

Mich I hope your is still going ahead on the 6th

Stay safe ladies

Hugs to all xxx