Hi ladies,

How are you all getting on?

Sorry I've not been posting for a while but with the 3 kids at home and homeschooling its completely taking up most of my day at the moment on top of everything else.

I will be glad when September comes and they are all back to school hopefully.

Claire I fully empathize with you and the lack of sleep because I think the maximum sleep hours I am getting is only 4 too!

Sue, you asked if I'd had any news regarding my ops, well I'm afraid to say I've not heard anything at all and getting increasingly anxious with the wait.

The ovarian surgery was provisionally 5th August but they said it was just provisional and could change but either way they would be in touch 3 weeks before that date to let me know.

Are you still manage to get out for a walk everyday?

it's so good for both your mental and physical health but I know you were finding it tiring.

Davia you are always in my thoughts,

I'm so glad you've got such a great team who seem to be very efficient at getting things moving for you with the plasma trial.

You're so strong and courageous and a true warrior.

You will beat this again and get through this testing time I know Davia so keep being strong ok.

Mich I'm glad rads are all done for you, keep slapping on that moisturizer on those pink areas to help prevent any dryness.

You mentioned issues with your wrists and some pain when lifting a kettle.

I have been having these rsi type pains in my hands and wrists and think its Peripheral neuropathy which I think is another effect from the docetaxel we've had so I am told.

I know its strange not having many appointments once treatment has finished but you should be seen within 6 weeks of finishing radiotherapy and then discharged to bd then followed up every 6 months for a year and then once yearly.

Carla I'm pleased you are seeing physio regarding your shoulder, you can do without any further discomfort so hopefully it will help.

Linda how are you?

Big hugs to you all and anyone I may have forgotten. 

Xxxxxx

Stay safe

Love Karyn xxxxx

Hi ladies,

Ah thanks, yeah my skin is managing ok.  Its no longer pink but a lovely shade of dirty brown. I had a catch up call with the radiologist on Tuesday and she is happy with my progress.  I'm peeling a bit in my arm pitt, which apparently is dry peeling so all ok. My shoulder is also a little stiff not as supple as it was before rads so I'll continue to stretch it. 

Yeah I think you're right Karen about the neuropathy as i know i did struggle with that after chemo  and rads has made it worse.  My bones do feel more fragile, esp when i wake up in the morning.  Everything goes click click click and I'm going ouch ouch as i get my hips and knees working. 

Aww homeschooling must be tough at the mo especially has it has been going on for a while now and all kids are out of a routine. Not easy eh.  roll on September!

I'm still faffing in the garden and keeping myself busy pottering.  I have some annual leave to use up then I'm due back at work on the 12th August.  I was diagnosed on the 13th August last year!!  Work will arrange a phased return and I will work from home as no one is in the office at the mo.

Ah I have another appointment next week, prosethic fitting on Monday.  So back to where i had my rads. Quite exciting to have a purpose to leave the house lol!  And get my fake boob which i guess is a foob :p

Hows everyone else doing?  I have felt a little loss and not in the mood for chatting to friends, just been in my own little world, which i guess is normal after what we have been through.

Davia, always thinking of you and hope you managing ok and getting support.  Big hugs

xxx

Hey Sue,

I know where has the year gone!  I remember you were having your first chemo and I had just been diagnosed and we were both feeling lost.  And here we are, out at the other end.

Thanks, I've been feeling ok after rads and skin is all healed and no longer red, yay!  I can feel my shoulder is still a bit stiff but getting better with the exercises.  How you doing?  

Karyn, thats annoying they cant give you a date.  I know services are slowly returning so hope they wont keep you waiting too long.  

I had my fitting yesterday, was strange being back at the hospital after rads as its busier now with other department open.  Luckily no delays like rads so in and out in 10 mins.  So now i have a silicon chicken fillet to wear yay!  Just need to get a decent masectomy bra so it doesn't pop up to say halloo like the softie.  Carla, cant remember did you say you had a mastectomy? 

Ladies, how are you all doing?  Hope you all managing ok.

Hugs xxx

Hiya Mich...

Do you still have the stiff shoulder? I do...the physio has given me some exercises and it's improving slowly.

I had a bilateral mastectomy so I need two chicken fillets lol...I did have an appointment for the fitting but I still have a seroma swelling and the appointment clashed with a radiotherapy session so I've postponed it...I am symetrical and I am quite happy without a bra at the moment so i'm going to give it a few months for the seroma to settle further...

On the bra front, I've noticed that lots of bras that arent labelled as 'surgery' ones still have lilttle pockets in them...and marks and spencers do some lovely ones...I couldn't have had one with a single mastectomy as their surgery ones dont go up to GG/H lol...but now i'm spoilt for choice..

Davia, I hope the trial is going well, you're an inspiration to us all with your positivity.

Karyn, Linda, Claire, Sue Bea and anyone i've missed.....stay safe warriors xxxxx

Hi Ladies, hope your all doing well. 

Sorry for the long silence, I have been up and down to the hospital having scans, CT and Bone, then bloods, enough for Draculas dinner, they send 2 files to America and the other 3 go to Marsden hospital, oh I have 3 ecg to, so full on   and coming to terms with grade 4 diagnosis. It's been a massive roller coaster but it is what it is,

I started my chemo treatment this morning, 4 tablets, you have to take them on empy stomach and not eat anything until hour after, it's chemo drug and the side effects read the same but I'm praying it's going to be kind to me, I had a hell of a time on EC/PC.

I Want it to shrink the tumours  

I hope all you ladies are enjoying the lovely weather, and I think you have all, almost finished treatment, so be kind to yourself give your body time to heal after it's onslaught. Love and hugs to all xxxxx

Hiya Carla

Thanks, shoulder isnt too bad now I'm back onto my exercises.  My skin still feels rather tight under my arm when i stretch but luckily no pain just strange feeling.  all the peeling has gone now, so now it just looks like ive been on a well dodgy sunbed!

Ah yes, i remember you saying now.  Thats quite cool you can choose what size you want to be!  I know my friend is GG and she really struggles.  Me, i was quite chuffed to get a C cup fillet.  Hmm I am thinking its a tad big though. But guess it has to mimic your breast once its pushed up in a bra and not just hanging!  I did weigh it though, 327g.  I know i really must get out more.

Sorry to hear you still have that annoying seroma, hope its not too painful.  I still struggle to sleep on my left.  I roll over on that side in the night and wake up in pain and cant seem to move back very easily as body is so stiff.  Guess chemo side effects too. 

There is a lady on instragram called TittyGritty and she is giving away bras each month, 30 of them.  So I've entered to see if i win a bra lol!  Shes been on ITV with Lorraine, haven't seen it yet but she is quite amsusing and works with local charities after her diagnosis.

Ladies, are you still getting loads of aches and pains?  My knees and hips still ache esp if i sit still and get up.  I'm guessing this is still normal after finishing chemo 4 months ago.  If i squat i still cant get up without hanging onto something and literally dragging myself up.   Sue, are you still walking a lot?  I haven't been out much these past 2 weeks but still pottering outside and painting.

Hugs xxx

Hey Davia,

Lovely to hear from you, no need to apologise you have quite a bit going on esp with all the scans and appointments.  Sounds like you need a p.a ;)  I'm glad to hear they are looking after you and keeping an eye on your body etc.  Why are the bloods sent to the US, is that for testing?

I really hope you dont get bad side effects, hopefully it will milder in tablet form compared to intravenous.  Did they say how long you'll be on these kind of tablets?

Hope you are doing ok otherwise and getting support from the other stage 4 ladies.  Always here for you.

Hugs xxx

Hi Mich

The trial I'm on is a plasma match trial, so they look at DNA in bloods and decide on best treatment, it's all very complicated but in a nutshell that's it. 

If the chemo works to shrink tumour then you stay on it for life, they can lower dose if it gives to many side effects. I'm just keeping it all crossed this shrinks tumour  

The ladies on TNBC stage 4 are lovely, really supportive, like you ladies it's amazing what they can do nowadays..

I think your aches are chemo related and shoulder blade ache is from rads as you had neck area done to, 

Get out and walk as often as you can, but don't over do it, your body is still repairing and needs rest to do that. 

Take care keep well, love and hugs xxx

Hi Ladies,

Hope you are all ok and been enjoying the sunshine.

I'm just catching up with all your posts as it's just been a hectic time with one thing and another so I dont get much time to come on here much especially with the kids around me all the time.

Sue I hope you are managing to get out for your daily walk still and that your aches and pains are getting less frequent.

I'm having good and bad days really and wonder if I will ever feel my old self again sometimes.

As regards my surgeries Sue unfortunately I'm still waiting for news about dates.

My gp rang me and phoned the hospital on my behalf last Friday and they said they would ring me with more information but they didn't so I rang later that day and was told the same that somebody would ring and they never did!

I thought they might have called today but no, nothing again and just left feeling abandoned!

My gp said I'm not being prioritized as they are dealing with ladies with active cancer.

The provisional date for the Oophorectomy was 5th August but I cant see it happening as they still haven't done the preop and also you have to have a Covid test before going in, none of which has been done.

The breast surgery could be 5 months away still to hopefully be reviewed in September but again no timescale.

Its causing me alot of mental stress and I'm finding it hard to sleep with the fear of the risks.

It's the ovarian which scares me the most as my nan and mum died of it st a young age.

Davia I pray your plasma trial works for you in shrinking the tumours.

You are such a brave lady and a true inspiration to us all on here.

I hope you gain increased strength to give this disease your all and beat it as you did before.

It must be so hard for you going through all of this again but you will come out a stronger person I know.

I hope you are being kind to yourself and getting plenty of rest etc.

Mich sorry about all of those aches and pains you are still having, I'm sure it is down to all the treatment you have endured because I'm still suffering myself with my lower back,  legs and as I said before Peripheral neuropathy which can be quite painful at times.

I was told by my gp these pains could last for up to 2 years and hope they will all eventually disappear.

I still have a red blistery rash on my chest from radiotherapy which finished last year for which I'm just putting on moisturizer still to compensate for the dryness.

Carla, Claire and Linda, hope your all ok and for anyone I have missed.

Love and hugs to you all fellow warriors xxxxxx 

Karyn xxxxxxx