Anyone from East Kilbride/Glasgow area?

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541

Hi everyone

Wowo glad your first chemo went ok, it’s good to get it over with. My onc advised me not to drink at all during chemo and i really missed my odd glass of wine.

Fiona glad you had a nice birthday, how was the muscle inn?

Sharon it’s great that you’re back in your flat its good to get looked after but eventually you want your own space.

Pauline, no advice re bras as i had to wear these huge support bras day and night for 6 weeks after my op yuck

Helen, don’t know how you are finding the energy to cope with a one year old. They do keep you going though when you are feeling a bit down.

Pauline glad you are starting to feel better. take it easy and be kind to yourself.

Helen, it is really hard going into work i completely understand how you are feeling. On the other hand its good to keep in touch it makes getting back a bit easier.

Shelia, good for you having an undie clean out, I am really overdue in doing this, gray seems to be a default colour in my undie drawer.

Annie, loved the jokes, shared them with my kids as we have a bad joke competition.

Jo, at least the weather is a bit better today, I can relate to feeling like you are biting the kids head off. I think we are sometimes to hard on ourselves though, kids are really resilient. Can’t remember what age are your children?

Everyone else hope you’re all ok.

I met with work on Friday and have kicked off the ill health retirement procedures, felt a bit strange i have worked ever since i left uni and have put a lot of effort into getting where i am. However i need to be realistic and the kids and hubby come first. Work is being very supportive and don’t foresee any problems. Haven’t had the greatest weekend as i have been in a bit of pain and my hip has started hurting. My mets are currently in my spine but i can’t help but worry that the new pain is a further spread Seeing the onc next week but i don’t want to say too much as i need him to declare me fit to travel. The family would be devastated if the holiday got cancelled. Still need to work this one out.

Off to south-side festival this afternoon as the kids are helping their ballet teacher on a stall for a bit, hope it stays sunny.

Take care everyone

Lesley xxx

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Hi girls

What a lovely day, pitty I can’t drive yet!

I was told it was ok to have a drink as long as you didn’t end up leggless. Kept me saine.

I wish this sorness and tighness would go away, feels like its getting worse instead better, it’s driving me mad!! After all it’s been 4 weeks now surely it must be getting better? Pauline how are you coping?
All last week exercises were easy now they are hard. Whats going on!!

Hope you all had good weekend
Sharon xxx

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Afternoon everyone…

I think I am obsessed with the weather.You wake up with the sun streaming through the windows and then when I eventually get up what happens? Sun is just about toddling off.The scottish weather is interesting to say the least.Looks like its going to rain now.Ach well water is good for the plants.
Lesley…I am sure you will get that pain sorted out…better you get it fixed now before going on holiday.Get some stronger medication anyway…its crap you have been suffering over the weekend.

Sharon, my armpit is still sore …have kept taking some painkillers.I am not that good at doing the exercises…rather exercise my hand up to my mouth with a wee drink in it.Up to see docs on wed…wish there was a quick fix with the healing process…alas I think its just time and sticking with the regime the physio gave us.

Yvonne…glad you chemo is going well.Thats one down anyway…way to go.
Well girls that Jeeves just called me for dinner.
Take care and luv to you all
P XXXX

544

hi girls

sorry iv not been on for a while… loads of catching up to do.

went for my appt on wed 20th and confirmed new primary invasive breast cancer grade 3 but was small sized - 10mm approx… had to attend pre assessment in afternoon as was booked in next day for surgery… had WLE plus SNB and radioactivity… 2 nodes removed… was really crap after surgery and only got out yesterday… but now glad to be home.

its all happened so fast i cant quite get my head round it… its not even 2 weeks since they first told me my mammo was suspicious.

go back on the second for histology results and find out what the next plan of action is.

im getting referred to genetics as both the radiology and breast consultant think i have a mutated gene… which may involve more surgery in the future… short term looks like chemo and rads but not sure yet as will need to make sure margins are clear… they werent after my first cancer.

annie you have really cheered me up with you one liners.

hope everyone is keeping well… glad you had a good birthday fiona.

sharon glad to see you are back in your flat and hope you and pauline get the pain under control and keep the exercises.

hope everybody else is doing ok.

Love Lynda xxxxx

545

Hi girls

My goodness, lots to catch up on. Will write more later.

Sharon, I really like Mr Yusef too. The Head of District Nurses, Ruth (WONDERFUL lady, I want to find out how we can go about getting someone nominated for an OBE/MBE - she has kept me going through all the tuff times and called me every day she wasn’t in to check on how I was doing, especially with the infections etc) Anyway, she has heaps of time for him, apparently he is really shy. We are lucky to have someone of his talent treating us.

Your hair has started to grow back already! You must be thrilled. I held on to about 1/4 of my lashes till last week, Fiona, the BCN last Monday thought they were false (!), but they have all fallen out now, apart from some mutant strays sticking out in strange directions. I look so odd now, and my wee nieces are upset. Apparently that can happen with FEC, when the chemo stops you can lose all your hair, so I kinda expected it. Just makes it hard to look ‘normal’; know what I mean?

Anyway, I am waiting for admission date for Local Wide insision, they are taking a mass of 2mm, which is less than half the size of the original tumour, and total lymph removal (I have had 5 removed so far and 2 out of 5 were involved) I recovered from that in about 2 days, so will it be much worse when they take the rest out? Mind you, that was pre FEC and I was a good healer. I have had a wee cut on a finger that hasn’t healed for a month! A wait then for about a week for the histology results to see if they need to do a full mastectomy. Had my assessment on Friday and I think my heart trace was dodgy, tech would not give me any info. Heart was strong as an ox before, now I can’t walk up a flight of stairs without being out of puff!

Pauline, does my case sound like yours in any way? I would love if you could advise me as I don’t really know what to expect. My fear is that my arm will be useless, because I had a terrible shoulder injury to the other arm, so there is loads that I can’t do with my right arm. Nothing in my life is simple, girls!

Waiting too for the results of DLA, can take up to 11 weeks - disgraceful!! AND that’s after the 3 month ‘trial’ cancer period. I already get DLA (lowest rate) for my right shoulder, I got that in a couple of weeks and backdated! And that was me filling in the form. I think the x-ray the consultant sent sealed it. He told me to apply for it as it was never going to get any better and that they had done all that they could to give me as much movement as they could.That’s why I am so shocked that the wait is so long for something so much more serious. Again, my blood is boiling on behalf of ALL OF US!!

It never ceases to amaze me that despite what we are all experiencing, the lack of self pity and bravery in this site is wonderful!

Went to the cinema to see ‘Angels and Demons’ - after lunch at … yes … The Mussel Inn!! One of my fave places too (my brother who lives in Blackpool) and I head straight there from Glasgow Central when he visits!!! Great being able to eat mussels again now that chemo is done. Had mine with leeks and cider, Theresa (eldest niece) had Moroccan. TOOOOOOOOOO good. Great being able to go to the pics too, now that FEC is becoming a memory!!! The walk from The Mussel Inn to the cinema pooped me out though, hope I get some strength back soon. Hate feeling feeble!!!

I am off now to buy some sunglasses, need to make appt to see dentist, filling fell out a month ago, also need to get glasses changed. Is there anything chemo doesn’t affect? Or have I just been unlucky? Everyone was telling how well I was tolerating it, but I think, like so many of you probably, that I was putting the best spin on it?

Any advice on the WLI and Node clearance would be gratefully accepted!!

Hugs to all

Annie x

546

Hello Girls,

Boy have I been busy!! Been very nice to be back to normal for a week, I’m shattered but in a nice way!! all geared up for tomorrow… Last Tax and Herceptin…half way, YeeHaa!! Then I become a FEC babe!!

I Looooved the Muscle Inn, gosh I could have eaten everything in there, I’ll certainly be going back. I shared a kilo of muscles with tomato and chorizio sausage and a grilled platter with my friend Tina… Tiger prawns in tempura to start!! LOVELY!!! I have partaken in a few glasses of wine this week it has to be said, but more in a marathon kind of a way and not a binge one. Hope my liver forgives me!!

Linda, I hope you’re starting to pick up after surgery… Rubbish that you have to go through all this again and lets hope they get to the bottom of it whether it be genetic or not. One thing that can be said for the NHS is that they don’t waste time “wheeechin” us in for surgery, Yours has to be the quickest yet!!

Pauline, Sharon… hope you two aren’t stiffening up too much? Just when you think the arm is getting better… Bang…just likes to stiffen up or tighten up a couple of cords!! get stretching with those excercises… one … two … three … four!!! it’ll be at least 6-8 weeks before normality prevails…

Lesley, hope you managed to get the pain thing sorted out?.. will the doc give you plenty of meds to take on holiday? I hope it isn’t further spread and maybe just a bit of refered pain from the spine…Bet you wish you were going on hols right now!!

Yvonne, glad your chemo went ok. they’re really nice in the Beatson.

Hi Helen, Have you been enjoying the bank holiday with the kids being off? it’s great not having to run here there and everywhere…
I really enjoyed the nutrition course at the Maggie’s and I will be going back in 2 weeks… people are really nice. did theory stuff and get to cook in 3 weeks…you also get your lunch there which was delish!!

Annie, hope you get your date for op soon… I had wide local excision too, so did Helen and Yvonne… I only had 5 nodes removed and they were clear… It’s less invasive that a mastectomy so you should have less healing time and depending on the cut you should retain most of your breast shape. I’ve lost about 1/2 a cup size and in a padded bra you don’t notice.
fingers, toes and everything crossed that you won’t need a mastectomy…

well I’m off to have stew for dinner, something to swallow the steroids with so it won’t upset the tummy…

Hugs to all you girls, {{{{{X}}}}}

Fiona xxx

P.S put on another 2 kilos at my weigh in this morning (must have been the muscles!!) the nurse didn’t say anything except “I take it you haven’t been feeling sick?” oh Bugger!!!

547

Hi girls

Still doing exercises but still stiff, think i’ll speak to physiotherapy tomorrow while getting back drained.

Fiona - knew you’d like mussel inn, not heard bad report yet unless you don’t like seafood, haha, but they do do other things.

I applied for DLA begining march, got letter sat saying no decision yet as need report from Doc, thot they would have asked from that at start!!

I think i may have to give up on this web site, was reading threads on IBC site and didn’t like what I read. It was all negative. Started a thread myself and still don’t like what I read, as you know I have been so positive from the start now i’m getting really depressed and fed up, I don’t know what to do except get on with life in front of me and don’t worry if it happens again it happens
:frowning:

I’ll post on this thread but no more!!!

Sharon
xxxxxx

548

Once again just typed in lots and messages to everyone. Can’t start again. Lots to catch up on - hope everyone is OK
I was at hospital today and say Dr Yosef. Bloods rubbish so back again next week. No chemo till then. Says I have to have 2 more then he’ll give me a break over the summer.
Have my niece tomorrow so going with my daughter Fiona to Heads of Ayr park. Looks really good with lots of animals and rides.
Saw someone was having bother with scalp. I used Bio Oil on my head. It is really good and smells better than olive oil.
Mussel Inn sounds fab - could we arrange a wee lunch there it would be good to meet up with everyone.
My BCN says ok to have wee glass of wine when on chemo. We all need something nice in our lives just now.
Take care everyone
Sheila

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Sharon…

Lets just cut too the chase…so you can’t get tamoxifen or arimedex.
Option…Herceptin…FAB ***** DRUG.
Keep fighting and don’t let the b%^&*(S get you down.
When are we going drinking?
Re DLA…I contacted my social worker and he can now take to do with all the wheelings and dealings.The idea is too put the common punter off from trying again.
Take care and big hugs
PX

550

Girls

Just incase anyone took it personal.

Just to claify, I am not getting at you guys, it was the other threads under Inflammatory Breast Cancer.

Pauline - not worried about no tamoxifen.
I got letter on Sat and then again this morning saying no decision yet to my DLA claim!!! I’ve been told to phone them myself incase it just medical reports they are waiting on.
How crap is this awful system, there are other people out there who get money left right and centre we have to struggle to claim.

Got back drained again today, wanted to see physio but girls who deal with breast recon were off, got appointment for next Tues, girl I spoke to told me to ‘give it some welly’, that was her exact words!

I have been using almond oil on scalp since I shaved head at beginning, I like using that.
Meet anytime for lunch/drinks diary pretty empty at moment, Rads start in July.

Hope everyone doing good.

Big hugs
Sharon xxx

551

Hi there,

Well 3 down 3 to go!!! Feeling ok. Just getting settled for britains got talent!! Asked onc on exact type of tumor and it is invasive ductal carcinoma. I wasn’t happy with the description of adenocarcenoma it didn’t seem to mean anything except a general name for breast cancer.

Sharon, I know what you mean by some of the other threads. I completely agree with your decision not to persue it. Maybe you could chat to Joan at maggie’s for info on IBC. She’s very good and will put things in a better picture for you. Or maybe phone the helpline on this site. There are medical advisors on this.
You are a positive person and it has got you through chemo and now surgery. You can get past this stage also. It has been proved that being positive is very beneficial to your health and recovery. Keep your wee chin up and remember we’re all here for you. X hugs X

Love to everyone

Fiona xxx

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Hi Girls
Well I’ve now lost count of the number of people who have told me how lovely my hair looks now I’ve started straightening it! So most of the time I just respond laughing – ‘wish it was my own’ and explain I’m having chemo. But it does make me wonder if my hair really looked crap before this! So, I definitely think I’m going to have to be weaned off my wig as I just love my new hair! My own hair is holding in there, although it has really thinned.

Fiona – I can’t believe you’re already half way through your chemo – thats just fab, you must be really pleased. I get my 4th & final EPi next Tuesday and then move onto the CMF, so I’m quite excited !

Sharon – I think you’re doing great, it’s so important that we all keep positive. Like Fiona has already said, being positive is so important to our recovery. Just focus in on the facts, you’ve responded so well to your chemo, you’ve had surgery and now you’re moving forward – you’re allowed to have a wee wobble – but keep smiling, we’re all here for you.

Pauline – How are you doing, are you getting more mobility in your arm yet? And are you still being waited on?

Yvonne – Glad your 1st chemo went ok, hope you’re still feeling fine, just don’t do too much.

Lynda – Sorry to hear about your new diagnosis, can’t believe they had you in for surgery so quickly, I hope you’re managing to get plenty of rest and are healing well.

Annie – like Fiona said I had a WLE and 5 nodes removed. I had a trace (1/3 of a mm) on my sentinel node. Mine was at the front and the difference in breast size is quite noticeable, but my bra camouflages it. You’ll probably only have to stay in overnight, nowhere near as long as a mastectomy.

Lesley – I hope you’ve now managed to get your pain under control. Did you have a good day out on Sunday?

Sheila – Sorry to hear your chemo got put back, I’m terrified of my bloods not being good enough as I just want to get through this as quickly as poss. Did you have a good day away with your niece and daughter

Well must go, need to go to bed.

Take care and hugs to all

Helen
xx

553

Hi girls Hope your’re all ok today. Sunshine is coming at weekend - can’t wait. Went to Heads of Ayr Farm Park yesterday. We had a great day and the weather was good. It’s a great day out for kids. Lots of animals and trampolines etc.
Helen - pleased you’ve got used to the wig. It’s great not having to spend ages in morning drying and stiling hair. I would like to wash mine but scared it loses its style. Mine was cut quite choppy.
Sharon - Are you getting on OK at home. It’s so difficult at times to just take in all that is happening to us. Try and stay positive. I’ve been doing this for 11 years. I had to wait ages for Dr Y to send report to DLA.
Can we all meet up over next couple of weeks
Look forward to seeing you all
Sheila

554

Hi everyone…

Hope you are all keeping ok.
Implants have been giving me a spot of bother…up to hospital today and now on antibiotics as wounds a bit red and inflammed…joy!!!
Got path report back and its good news.Rads date still to be confirmed.
Mobility with left arm still poor …still doing the workout…as advised by you gals.What a bind!!!
Jeeves is still on call but only at nights now as he had to go back to work.Going to my mums next week for some R &R.
At Yorkhill tomorrow…there is a great wee curry house there for munching after the appointment.
Take care all
PXXX

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Hi Girls,
Been very tired today and slept most of the day.

Sheila, good to hear you had a good day at Ayr. My kids loved the farm park when they were little. My dad lives in Ayr and the kids love going down there especially my youngest.

Pauline, sorry to hear implants not behaving themselves!!! Hope the anti-b’s do the trick. Good to hear path results also. Tina has been asking how you’re getting on and has asked me to tell you she’s asking for you.

Helen, good to hear wig going down a treat. I’m getting better with mine and I’m wearing it out a lot more.
Don’t think I’ll be needing weaned off mine though!!!

Sharon, hope you’re doing well.

Lunch, 9-15th June good for me as good week. Don’t know how that fits in with anyone else?

Well back to bed, had dinner and it’s tired me out.

Hugs

Fiona xxx

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Hi girls

Thank you all so much, knew i could count on you guys for support.

Fiona - sorry to hear your so tired, wish i was, not sleeping too good at mo.

Helen - good you’ve bonded with wig, I didn’t. Was going to go for another but think I’ll just pass as hair growing in now.

Pauline - I’m having bad time with arm as can’t get it over my head, stiffening up all the time, sorry to hear your having a worse time than me.

Shiela - great you had good day at ayr, roll on weekend for our good weather, thanks for your support i’m fine at home in my own comforts.

to everyone else hope you are all well

big hugs
Sharon
xxxxxxxxxx

557

Hi All

Sharon / Pauline – if your arm is still giving you problems I think you should ask to be referred back to the Physio. I had surgery on the 5th March and felt my rm was getting progressively worse 2-3 weeks later so the BCN referred me back to the physio and I got seen the following week! – within a fortnight (if not sooner) I had full mobility back. The physio said I needed to hold the stretch for 30secs building up to 1 min as opposed to the 10secs the pysio in the hospital said.

Pauline – Sorry to hear you’re having problems with your implants, hopefully the anti-b’s will sort them out. Glad you didn’t have any surprises with the pathology report and I hope all went well at Yorkhill.

Fiona – I’m totally shattered this week too – its crap isn’t it?. I’m at my worse the week before my next chemo, as opposed to the middle week; when I feel great and full of energy.

Sheila – I’m glad you had a great day at Heads of Ayr farm, sounds like a great place. I’m a bit apprehensive about washing my wig too, I’m going to wait another week or 2 before I’m brave enough to do it. I have to agree it is really great not having to worry about doing your hair in the morning. I just put a couple of curby’s in the back of my own hair before the wig goes on & a quick brush and it looks great, a definite timesaver when you have 3 kids to get ready in the morning. I have my 4th Epi chemo on Tuesday, so hopefully by the time I start my CMF I’ll know for definite how much of my hair has survived. I must remember to ask how long after the chemo that I need to be ‘gentle’ with my own hair for - Fiona, do you know?

I can do lunch Wed 10th of Thursday 11th. I have an appointment on the 9th in the morning with the Lymphoedema Nurse as I’ve got swelling in my thumb and 1st finger and then sports day in the afternoon – will def give the mums race a miss this year! John working that weekend so have kids to look after.

Looking forward to meeting up again - hopefully kids and hubby won’t be ill this time!

Take care all.

Helen

558

Hi
just quick note can do thurs 11th, my arm i just raised above my head when watching tv or lying on the sofa put my arm behind me it stretches the cording but when you do to much (as in use it) it plays up and needs to be exercised more, my wrist has started to get very tight.

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you all seem to talk about your onc Mr Yousf does he not have registrars that you see? Where is he based?
I haven’t met my onc yet my bcn said she would arrange it if i wanted
but i don’t see the point wasting her time.

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Hi YvoYvo

I can’t get my arm up it stops at shoulder level.
Dr. Yosef is based at Beatson but comes through to Hairmyres on Thursdays.
Apparently he is the top Oncologist, he got brought back out of retirement because of his knowledge. I see him when I have appointment at outpatients.

when I was getting back drained on Tues I asked to see a Physio but the 2 girls who deal with breast recon weren’t in, have appointment for this Tues (can’t believe that will be us into June already)

Hope you all enjoy the sun this weekend.

Sharon xx