[@WickedAngel]‍ [@Babs56]‍ 

Hey ladies,

its been a while so thought i would say halloo!  How you ladies doing with treatment?  Are you managing ok with the lock down.

I finished chemo 8 weeks ago today and had my mastectomy and lymph clearance a month ago. So recovering at the mo and doing my arm exercises so can get mobility back.  I'm waiting on news on radiotherapy, I may find out more next week.

The lock down has been a strange time but i'm glad we have had good weather as I have been doing quite a bit in the garden and faffing with a paint brush.

Hope you are ok and sending healing hugs

xx

Hiya [@Mich8]‍ and [@Babs56]‍ 

Great to hear from you Mich :)

Sounds like your mastectomy has gone well and that you are being a model patient :) 

I've been a bit up and down. The EC chemo didn't yield any shrinkage, but may have held things at bay so to speak. The carbo/pax I have found quite hard and they brought my scans forward due to the whole Covid thing. There has been a bit of shrinkage, 10-15%, which is not a  lot, but better than nothing. Due to this, they decided to pull my surgery forward to this Monday (May 4th or International Star Wars day lol). But they will only do the 'essential' mastectomy at this time. Partly due to limited theatre time (Covid again) and partly due to my heightened blood pressure & risk under anaesthetic. I've actually found this decision really difficult to accept. I am totally happy with going 'flat' but I so don't want to be lopsided. I have a huge bust (F cup) and I just feel it will cause me no end of additional back problems / I don't want to faff with a prosthesis / I don't want any additional and/ or reconstruction surgery. They have said they will 'eventually' do it, but depending on how long the Covid situatuon lasts, I should prepare myself for a 1-3 yr wait. I know I'm lucky to be getting any surgery at this time, and I don't wish to sound ungrateful, but ffs up to 3yrs ? That's a long time to feel unhappy about your body.,The very thought of it makes me feel anxious & depressed. Sorry to moan, but you know how it is, we each know what is 'right' for us, and this just isn't right for me. But I've got to have the surgery as it's my best chance at curing this sh*tty disease (72% according to the oncologists algorithm programme).  
 

Right, moan over lol

Can we talk about mastectomy bras ? Is it really essential to gave a front fastening one ? They seem to involve more arm stretching to put them on, than my normal one that I just fasten and twist round ? How is your scar looking ? Have you got a straight line or a smiley face ? Any 'dog ears' ? Did you have drain tubes ? How were they ? Sorry, that is a lot of questions. 
 

How are you doing Babs ? I hope your treatment is going well and that you are happy & feeling healthy. 
 

Sending hugs, love and prayers to you both, and all our warrior sisters.

Marie x 
 

Marie

Wow - I really feel for you.. Sounds like you are having a really rough time and it should not be like that.. I too need further surgery but I think reconstruction is out of the question at the moment due to this Covid..

I finish my treatment next week and it has been hard but have coped as much as I can and can't wait for it to be over... 

I was halfway through a mastectomy and reconstruction with enhancer so will have to wait to see what happens as I understand it hasn't worked so they going have to take it out at some point.  I need a full mastectomy as I have the Brca gene and already had Breast Cancer 3 times..   So I have one partially flat with enhancer in and the other is part breast tissue / part implant.. I see my surgeon in 6 weeks so will have to see what he says..

I really wish you all the best for Monday and hope your surgery goes well... Please keep in touch and keep safe... I think keeping safe is as much as we can all do at the moment..

Lots of love, Big hugs and positive thoughts come your way 

Barb x x x x x

Hi.. Lovely to hear you have finished your treatment and you are on the road to recovery.. 

I finish my chemo next Tuesday. 5th May and can't wait.. Its been rough at times but I can see the end now so I am grateful for that.. 

I too have to have more surgery but not sure what they will do as I was halfway through the reconstruction and with Covid not sure if they will continue at this difficult time.. 

Take care my warrior sister you seem to be good and have fought this.. Good luck with your recovery you seem to be doing well and that is great news xx

Lots of love and big hugs... Keep safe 

Barb x x x x

Hey Marie

Sorry to hear you had a tough time on chemo, its not always easy eh.  I did struggle with EC but so relieved it was finished esp after weekly treatments.

Ah may the 4th ;)  I had mine on April fools haha!  I was also rushed foward for the opp so just lest than 4 weeks after finishing chemo.  Like you only the masectomy, however the reconstruction wouldnt be done at my hospital anyways I would have to go to a different hospital.  As it was i went to a local private hospital as was covid free and had the opp there and stayed one night. 

The opp went a lot better than i expected and tbh quite surprised i only needed one night in hospital.  Most of it was numb for the first few days just odd shooting pains and weird feelings in my chest arm pit and down my arm.  I kept up with pain meds as they suggested, paracetomol every 4 hours and ibuprofen 3 times a day.  I took pain meds for week and half.

I was dishcharged with drains, which kinda freaked me out a bit.  Nothing wrong with them, just the fact this fluid was coming out of me. I walked around the house with a handbag in the end as the drain bag was quite big. I had no pain with the drain, as most of my side was numb.  I went back 6 days later to my local hospital to have it out and they litterally yanked it.  All was fine, again no pain just a strange sensation.  I'm quite gald i had the drain for so long as i did have a lot of fluid and i still have a lump of fluid under my arm pitt and around to my back.  This is normal and your body will drain it over time.  I know some people only have the drain in for 1 night.  My consultant said the other doctor at the hospital would of taken it out the next day.

I had all my lymph nodes taken out, all 27 of them!! so thats probably why there is loads of fluid.

My scar is actually quite neat, better than i thought.  It is one straight scar for the mastectomy and lymph nodes, sometimes they do two. Hmm dog ears, you mean the skin folding over?  It is a bit odd around my arm as initially i had a lump that was very hard next to the scar, this has now softened with my exercises, so i guess scar tissue. I've been putting moisturiser on and bio oil.  I kept the dressing on for 10 days as advised and my sterri strips came off 14 days after opp. i'm glad i kept them on that long as all seemed to heal nicely underneath.

That's really tough for you, with the decision taken out of your control.  Have you spoke to your breast care nurse or consultant for advice.  I'm a 36B so my chicken fillet doesn't need a bra at the mo.  TBH i haven't worn one yet as too uncomfortable with swelling and numbness.  I did get vest tops from M & S with the support elastic.  So i've worn them a few times with the softie they gave me.

I tried to look for post opp bras but hasn't been easy as no mooching around the shops at the mo.  M & S had a crap selection on line so i went to ASDA as recommended by another warrior and found quite a few.  I ordered them about 3 weeks ago and coming this week.  I'll let you know what they are like when they arrive.  I did try on a sports bra i had a couple of weeks ago, its quite a bit size and thought hey sure i cant get it on, err but no!  I got stuck and was extrememly painful!  So wont be doing that again.

Have they given you a softie, your exercise booklet and a heart pillow for support?  Start your exercises the day after the opp, take it easy but just get going with the movement. I can now almost lift my arm right up.  As i was advised stretch just until before the pain, do not push yourself through any pain.  For the first 2 weeks i felt it wasn't doing anything and now the last week it seems to be coming together. 

Have you also been looking at the Breast Cancer Now site.  They have some good advice on their and blogs from other ladies.  I downloaded the app BECCA.  I have also used the 'someone like me' and they match you up with a lady who has gone through all of this and is now trained to listen and give advice. 

I'll be thinking of you tomorrow.  Let me know if there is anything else you want to know.

Big hugs

xxx

Hey Barb,

Lovely to hear from you too! Not easy time for us warriors but we'll get there. That's great your chemo is finishing next week yay!  gosh it does sound like you have been through quite a bit with your opp.  I sill think you could right a book of your experiences ;)

Do you need radiotherapy or just more opps now?

Thank you and hope you are having a relaxing weekend.

Hugs xxx

Hi Mich

Thankfully I don't have to have radiotherapy as I had it both sides over the years and don't think my body would take any more.. 

I can't wait until I finish the chemo as the bone pains have been getting stronger with each treatment... I am really looking forward to trying a glass of wine after months of not having any

Just sitting outside soaking up the nice weather. Hope you are too 

Take care and all the best for the future 

Big hugs from me 

Barb xxx 

Hi Babs,

I came across your story whilst searching for some support regarding the Brca1 gene which I was most distressed to find I was a carrier of a year ago at the age of 48, prior to finding out about Brca I was diagnosed with Triple negative breast cancer grade 3 with 2 lymph nodes affected.

Like you my mother died of ovarian cancer at the age of 53 without ever knowing about the gene and there is no history of breast cancer in my family at all so it was all a complete shock to me and I have found it a very traumatic experience having had little support.

I really admire your strength and positive attitude facing everything you have been through dealing with breast cancer 3 times and pray that after this you will never have to encounter cancer ever again.

You've inspired me with your story to be strong and to look forward with a positive attitude.

I had a complete clearance from my chemotherapy a year ago and clear margins from my bilateral lumpectomy.

When first diagnosed I just had a tumour in my left breast and 2 nodes affected however 2 months into chemotherapy an MRI was requested which showed a tiny area of concern and a biopsy revealed a tiny triple negative tumour in my right breast.

I was devastated but my chemotherapy continued as the treatment remained the same. After all my 6 rounds of chemo which were very grueling I had a further MRI and the cancer was gone; complete response but I still didn't find myself jumping for joy and it was not long after this that it was revealed that I had the  brca 1 gene.

Since finding out I have found it very hard to live with especially as I have 2 daughters age 5 and 6 and a 13 year old son.

I was refused a double mastectomy despite being told by my oncologist that I had up to an 80% risk of a further breast tumour and then she mentioned about Oophorectomy to with regards to my ovaries being removed because the Brca 1 gene increases my risk of ovarian cancer too.

I suffer with severe anxiety so these odds are something I cannot comfortably live with and so I have been on the waiting list now for a double mastectomy with reconstruction which should hopefully be happening in August as I am now listed as urgent because of my anxiety state etc.

I have an Oophorectomy scheduled for 3rd June which was cancelled from 8th April  due to the Coronavirus pandemic, and I have my first mammogram and MRI after my surgery last year coming up on May 12th.

I am terrified about going for the appointment on 12th and again its affecting my mental state as I'm taking diazepam on a daily basis at the moment.

I'm just thinking all the time when will it ever end and despite constantly keeping busy dark thoughts do creep in and often flashbacks to do with thoughts of reoccurrence.

Have you any advice you can give me regarding what your own experiences?

Wishing you all the best with your treatment 

Karyn  x

Hi Barb

Thanks so much for your reply and helpful advice.

It always is good to speak with someone who knows exactly what you're going through having been through it all yourself!

What a difficult decision you are faced with regarding your wait for surgery and reconstruction, I can only imagine how hard the wait is especially with the Covid19 pandemic and so many ops being delayed, you just want a date in mind but I guess it's just a waiting game!

Is there anybody at the hospital who can advise you on how long you will be waiting etc?

I ve had pre ops over the phone for both my Oophorectomy and masectomy and reconstruction but there are still some outstanding tests that they want me to go there for nearer the time.

I have my mammogram and MRI next week as it's a year since my bilateral lumpectomies and axillary node clearance, I'm very anxious but know if has to be done for peace of mind.

I think you are so right saying that once my surgeries are done then I will start to feel better but in the meantime it's like a ticking time bomb feel.

I lead a hectic life with 3 children to care for and am always kept busy which I suppose is a good thing but it means little time to rest and meditate and stuff which is what I need to focus on and making more time for myself.

You are a remarkable woman and a true inspiration with all you have been through Barb.

I hope everything works out ok for you with your surgeries and I will keep you updated about how I get on.

Take care 

Karyn xxxxx