Hi Mich

My dietician recommended Higher nature Osteofood tablets which contain calcium and vitamin D and itsxa great bone strengthening supplement and you take up to 3 daily.

I think its generally the hormone cancer ladies that need the supplements more because they take various hormones for 10 years after finishing treatment which affect their bones.

Karyn xxx

Hi Michelle,

Just been catching up here.  Well, Sacha appears to be very much like you regarding symptoms, large lump and small boobs. 

She is going to ask for a new drug tomorrow Trikafta (gene therapy for cystic fibrosis), Only a few people are prescribed it and for special reasons only.  She's currently on one symkevi, but Trikafta is far better. If she isn't approved, she will have to go public maybe?  The drug will boost her lung function which will help her with the chemo.  

She has joined the fb group, but not sure how to interact with anyone. 

She already has a portacath used for iv antibiotics, so they will use this for chemo. 

Regarding arm swelling, Sacha had this before Xmas as she had a faulty portacath which caused swelling when she used it in any way. It was removed and another one fitted other side. Will she get the swelling back?  She couldn't lift her arm, the arm swelled up when she did this. 

How do you all manage with friends who have been through breast cancer?  A very good friend of mine survived breast cancer many years ago.  ( I am 61, shes the same age and was early 40's) I do not know if I should approach her as she had a really tough time with it, had rehab etc. I do not think she had breast care nurses for help.   Do you think it would stir up bad  memories? She had everything you girls are having, no reconstruction though, not so bothered.

What I am amazed about is how amazing her friends have been with her.  I never thought that age group would be so caring.  What she does really need though, is  some friends who have had this rotton bug@@, as she just wants to chat about things she will go through.

Anyway, have a lovely day, take care, thinking of you all.

Jan xx

Hi Jan, 

Your daughter sounds like a beautiful courageous young woman and with family and such kind friends she'll get through this. I personally found it easier once the treatment actually started. I'm sending her a massive hug.

Karyn, Mich, Claire, Davia, Sue and Linda - I hope you've all got glorious sunshine to get on your bones and have a lovely bank holiday.

love and prayers to all

xxxxxx stay safe xxxxxx

Hi Ladies,

I am sorry to read that so many of you are still having a tough time. It is true that once treatment starts you will feel better as it's something else to focus on and you know that you are being treated for this horrible disease.

On the subject of vitamins, I was told not to take vitamin C tablets as it could stop the radiotherapy from working. I have researched this and some studies show this is the case and some say it can't be confirmed but is a possibility.

I too have been suffering from really bad back and bone aches and pains. Although I am sad to hear it is pretty common, I was a bit worried that the cancer had come back in my bones. I will now stop being such a hypochondriac.

Tuesday next week is D-day when I tell the Oncologist that I will not be having the oral chemo. I am having sleepless nights worring if this is the right decision but as he told me, whatever I decide won't be wrong.

Stay stong Ladies and enjoy the sunshine. All that vitamin D can't be bad.

Love to all,

Sue xx

Hi Karyn

Thank you for your posative post, it made me feel better  

Wonder why it takes them so long to get MRI results, I don't think they realise what it does to our mental health but it's not long now, and I always think, no news is good news, I would think if anything looked out of place they would let you know sooner. 

With your reconstruction are you having that done at same hospital as you've been having your treatment in? I think in Kent you have to go to East Grinstead for reconstruction

I hope your bable to get out in sunshine and have a calm day, big hugs

Hi ladies,

Thanks for the advice on the vitamins.  I've made a note and will discuss with oncologist when i finish treatment.  Weird, i was also told not to take vitamins when having chemo.  i eat healthly, loads of fruit and veg err and cake lol!  But always good i think to supplement with what we have been through.

Davia, your sister sounds lovely and i'm glad she is doing ok.  My friend had BC 10 years ago and didn't have chemo, actually there are 4 ladies at the office that have had it and just 2 had chemo as the others were caught early and not in lymph nodes.  I'm the 5th one now in the office, the only TNBC.  At this point you do start wondering if there is something in the water lol!

It was a lovely day here in Kent, how was everyones day? I managed a walk, stroll for 6km but avoided the beaches as they would of been packed!  Margate has been all over the news with everyone cramming on!  Sue, I bet southend on sea was just the same. 

So tomorrow D day for you Sue. Sorry you are having sleepless nights, I'm sure you will feel better and a sense of relief once you have the appointment.   I was reading on the FB group that Linda recommended and it seems that some Trusts are offering cape to patients when not all trusts have the drug for primary as it is not per NICE guidlines.  So it seems some are offering it as an added extra but not essential.  Hope you sleep better tonight, will be thinking of you tomorrow.

Linda, Carla, you starting your rads tomorrow?  Hope all goes well :)

Karyn, sorry to hear your breast care nurse hasn't been supportive.  Could you speak to another nurse?  I have a number to call and its not always my nurse that calls back , as depends on which shift they have.  Hope you got to get out in the sun today with your kids.

Yeah, I'll have to go to East Grinstead hospital for reconstruction. I have my appointment for next May, which feels odd, to meet up with the consultant.  

Hope you all doing ok.  My hot flushes are fab in this heat!

xxx

Hi Mich,

My phone consultation is next Tuesday not tomorrow so still another week of worrying.

We went to Burnham on Crouch today as Leigh on sea beach and Southend would be packed as you said. It was lovely walking around and forgetting my troubles for a couple of hours.

Like you I am also having hot flushes, not great in this heat. 

I bet you're be glad to get the radiotherapy done and dusted. I can't believe how far we've all come.

How's everyone? All good I hope.

Love to all,

Sue xx

Hi Jan,

I know it does make my laugh sometimes, i've always wanted larger breasts as I'm tall with a broad back and now i have one.  Just call my wonky! haha!

Good luck with the new drug, hope they do prescribe it as keeping her CF under control will be important with chemo and immune systems. 

I'm sorry to hear she had swelling with her poracath, doesn't sound pleasant at all.  Perhaps one of those anomalies. I would ask about it.  I had a port fitted and glad i did as after 2 chemo's my veins are rubish and my port doesn't bleed, which freaked the nurses out each time i had chemo.  But was told all was fine as it flushed just didn't bleed back.  its on my right side so far away luckily from my left and dodgy arm.

When i was first diagnosed, actually before i got the confirmation i joined the forum.  I read a lot of stories as i was trying to process what was happening and treatment i had coming up.  its quite a bit to take in, in the beginning.  I was numb for ages, went back to work the next day after being diagnosed like everything was normal.  Once my chemo started it sunk in and tbh a sense of relief that i was on the treatment path.  The nurses are really lovely and were so supportive, i actually enjoyed going to the unit, it was my safe place and had a laugh with the nurses and got well looked after. 

Have you mentioned Sacha's diagnosis to your friend?  If not I would let her know and leave the ball in her court, so to speak.  As its been a while ago for her she may be in a better position to support you now.  I've had a couple of friends go through BC and at the time i also was worried about upsetting them and let them take the lead.  What i have realised now being on the other side is that being there as a sounding board is important.  We always want to fix things when our loved ones are not well, however sometimes its better to let them talk and be an ear to listen when going through BC  Does that make sense?

I also wanted to know everything that was coming up in the beginning.  I ready every brochure i was given, cover to cover and went on so many websites that i went into overdrive!  Once i started treatment i felt better and as Sue and Davia recommended just take one step at a time, so going through chemo i didn't look at anything relating to mastectomy or radiotherapy until i was near treatment.  it did keep me focused and helped not worrying about the next step. 

She is more than welcome to join us here or send private messages if she prefers. 

Breast cancer now offers the 'someone like me' where they will match you up with someone who would benefit you to talk to.  I've used this a couple of times, when i was due to finish chemo and before my opp.  it is a really good service and as the ladies have been through BC they know how you are feeling. breastcancernow.org/.../someone-me

Big hugs to you both

xx

Hi ladies 

Yes Mich tomorrow is the start of my rads 3.50 app, 8.30 wed, 4.40 thurs then the rest are all morning ones before 9.15, cant believe I am on this last stretch!!

Hope you are all well and enjoying this fabulous weather. 

Good luck for tomorrow Carla.

Lots of love ladies xx

Hey Sue,

Ah ***, sorry! :p  Ok, next week then.  I'm surprised I remember what day of the week today is lol!

Ah glad you enjoyed the walk, it really helps clearing the mind.  i enjoyed todays walk, had to have a shower when i got home to acclimatise.  its so weird as im normally a person that feels the cold more than heat!  I have one of those little battery operated fans i carry around with me. 

Yeah , glad I'm on the home stretch soon.  8 week wait after chemo so close to yours haha!

I know, to think 9 months ago we joined this forum and are kicking cancers ***!

xx