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Surgery May 2018

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning all,

Paulus - well firstly good news that the bone scan showed nothing BC related.. phew!   Although not great about the poor old bones suffering so much.   I fully get that you want to carry on with everything you enjoy and I think you should.. I am suffering with aches and pains and find that I can deal with them better if I get out and about, sitting around just makes me stiff anyway.   You have the right to deny or accept any treatments, its your body and your decision to make.  None of this cancer stuff is straight forward is it, always a decision to make and lots of side effects to consider.   I for one never realised just who much Tamoxifen would affect me, I still remember my BCN at my diagnosis appointment saying "hopefully you can have a lumpectomy and some rads and then some nice hormones".. ha ha who was she kidding.. she's obviously never taken a Tamoxifen in her life!  

Feenix - good on the hooping.. I did some too, still trying to lose some weight and avoiding the biscuits as much as possible but just seems the weight is sticking.   No I don't get any training for being a Community Champ, just a very nice email saying carry on as you are doing and supporting and offering advice.   Just get a nice star next to my name some time soon I think!

Hope everyone else is doing ok out there...sun still shining which always helps

Big Hugs all round

Kip

xx

Member

Re: Surgery May 2018

Hi Paulus

It’s all about swings and roundabouts isn’t it. We can accept or refuse any treatments...it’s all up to us and what we are happy with. Like you I’m on Letrozole and I know I have mild osteopenia from last years dexa scan. I crunch the calcichew/vit d tablets daily, eat/drink  dairy and walk in the hope I may keep off the biphoshonates.... my dentist says we will deal with that if it comes to it. There’s always a decision to make somewhere along the line although we would like to avoid them... I certainly would.I’m due to see my onc in September so I will be doing research into biphosphonates, again, before then just so I can ask questions if he mentions having them. I really need to know what the teams policy is anyway before I have my dexa scan next year ... be prepared and all that. There’s an optimal length of time to have them if I remember and that minimises the risk of major side effect. Lots of info on the NHS site. Might you consider having biphosphonates or having a trial of them?

 

Onto other things...I’m still awaiting a copy of my last clinic appt letter... it’s probably lost in the hospital post room. Looks like I’ll have to phone sec again at the end of the week.

Ive been picking up the hoop again Kip...back not so bad now. Slight weight loss but got to confess I ate chocolate today ... couldn’t resist. Still no biscuits though. Forgot to ask...will you have some training re. Comm champ .... an away day would be good.

 

hope you are all enjoying the good weather

xx

 

Member

Re: Surgery May 2018

Good afternoon ladies. . . . .well I went along for my bone scan results today, and the consultant informed me that the MDT see no problem connected to the BC  -  but my bones are not the greatest these days it seems.  I am 64, and I have 'suffered' with back issues, sciatica, some spine curvature/scoliosis for some years now  -  but the bone scan doubly-confirms last year's DEXA scan that I am bordering osteoporosis . . . .

 

And there is the double-edged sword.  Because I was Grade 3 with one node involvement, I was initially advised neo-adjuvant chemo - I declined.  Surgery was successful, but just about made the margins - and again chemo was advised - and declined.  I had the radiotherapy (20 zaps) last summer, and came through that well.  Then, because of the node involvement and high oestrogen sensitive, the Letrozole was prescribed.  BUT because of my dodgy teeth, I wasn't prepared to risk bisphosphonates  -  so my dodgy bones have been denied the slightest smidge of oestrogen, with no bone strengthening, and that's the new dilemma for me.  It's a continual trade-off?

 

The back pain that caused me to ask for the bone scan was the worst I've ever had - and it's taken 8 weeks to get somewhere back to 'normal' - but made me very aware that I have limitations now.

I'm a 'must get out every day' person  -  I don't drive, I walk everywhere, get bits of shopping, chatter in coffee shops to strangers, lol. . . . .and it has to be the quality of my life?  I could never bear to live my life behind the window, being visited, with TV and radio and newspapers. . . . .. and the emphasis was concern about my femur ( ooh noo, my older sister just had hip op ) . . . . 

 

So I don't know where I'm going with all this info - except to admit to being a self-prescribing dingbat !!! 

Kip Community Champion
Community Champion

Re: Surgery May 2018

That's excellent news Linda.   Its so frustrating having to battle through red tape to get anything done sometimes, I wish everyone just followed the same guidelines.   I was told they would compare this years to last years in regards to density, they haven't mentioned anything though although they did say last years was dense.   I'll have to chase that again I guess.

 

We've just had the biggest hail storm here and now the sun is shining crazily and the washing is back on the line... hope its nice for everyone to travel tomorrow...

Looking forward to seeing you.. 12.30 Birmingham here I come!

Kip

x

Member

Re: Surgery May 2018

Good news Linda. I would have expected they would review your previous mammogram if diagnosed within 3 years of having it. I mentioned my previous mammogram as I had it 8 months prior although I can’t remember getting a definitive answer about comparison...was told it would be looked at though and got the impression it would be at MDT meeting.

 

Weather rubbish again today.

xx

Member

Re: Surgery May 2018

Just found out my mammogram was ok too! I hoped to get my mammogram from 2016 double checked but it has been refused twice by my local hospital. I have a leaflet that says you are entitled to have it independently reviewd so not sure why they refused. xx

Member

Re: Surgery May 2018

Hey Ladies,

Thanks for all the good luck messages. It is so reassuring to hear all the positive outcomes with your mammograms. Completely illogically I think, if you are ok, then I will be too!

Love Jane xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Ooh Linda a 3D mammogram.. how interesting... must fill us in on Saturday!

Kip

x

Member

Re: Surgery May 2018

Not really different equipment but wasn't painful like my first which was at a mobile unit. I will ask the surgeon re 3D mammograms. There was an error and she got someone in but that just cleared on its own. I had it sitting down and she had to do an extra one but I got the impression it was ok as she said the surgeon would reassure me when I asked about having an ultrasound too.

I have asked the surgeon's PA to look out for it so I can book the hotel for the night before the op.

Xx

Member

Re: Surgery May 2018

Fingers crossed for your mammogram results Jane and Linda. 3D mammogram sounds interesting ...is the equipment different?.... less squishing would be good.

Ive just remembered to request a copy of my last clinic appointment letter and I’m hoping it may have written confirmation about my mammogram results in it as we are told verbally on the day. 

Xx

 

Member

Re: Surgery May 2018

Hey,

Just had a 3D mammogram on both sides which I get the impression is the best type of mammogram? Get results today or tomorrow.

Waiting for pre op now.

See you on Saturday!

Love Linda xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Glad you got your letter Michelle, although it is a bit of a disappointment with the one liner isn't it.  I was hoping confetti was going to shoot out or trumpets sounding... hee hee.

 

Member

Re: Surgery May 2018

Hi Janie, Keeping everything crossed you have a short wait and good results!

I eventually received the letter from the hospital this week. It almost wasn’t worth the wait, one line to say all ok and that was it. I don’t know what I expected really, perhaps some party poppers and a bit more detail to show how thorough they have been at checking! X 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Got everything crossed for you Jane,  it's hard waiting isn't it.   I tried to read the lady's face as she did mine too... She must wondered why I was staring at her 😳

Member

Re: Surgery May 2018

Sending hugs and keeping everything crossed for you that all is clear Janie xx

Member

Re: Surgery May 2018

Well, I had the mammogram yesterday. It was the same lady as last year. I had been fast-tracked last year, and, even though she has a very good poker face, I could tell it wasn't good news last time, as she kept saying last year, ' I just want another image of your left breast' ( which had the lump).

Anyway she just took the two images of the right breast, but I don't know if that means she didn't see anything. My friend who was diagnosed eighteen months before me, had her images checked at the time of her follow up mammogram, and was told immediately that it was clear, but there were no suitable staff working yesterday, and the radiographer said they don't inform on the day, and  it had to be checked by two people, prior to my being informed of the results. So please keep everything crossed for me, ladies!

Best wishes, Jane xxx

Member

Re: Surgery May 2018

Pleased you got your results letter Kip. I’ve done a bit of hooping, some walking and wiifit when the weather has been rubbish. I doubt my weight will be budging even an ounce as I had a yen for ice cream over the weekend .... not good.

Hope your run went well yesterday Michelle.

Hope everyone had a good weekend. 

xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Oh grrrrr... Weight loss this week 2 ounces... I'm sure losing weight was never this hard before... Oh well onwards and upwards 

Highlighted
Kip Community Champion
Community Champion

Re: Surgery May 2018

Thanks everyone, yes in black and which is definitely good.   Michelle I know what you mean, that's why I rang up yesterday just to double check it was all ok.. began to think I had dreamt it all.   Good news on just the one chocolate day, its so hard isn't it.   I could eat a whole chocolate shop at the moment, am hoping a Gin and Slimline tonic will steady the crave this evening.

I am really looking forward to seeing you all, just look out for the pair of curtains walking in the restaurant!

Jane I'll be keeping my fingers crossed for your mammogram results.. be prepared for the long wait...

Kip

x

Member

Re: Surgery May 2018

I’m pleased your letter has arrived Kip, still no sign of mine! Thankfully my mum was in the car with me when I received the car otherwise I would be questioning if the call ever happened!! 

Looking forward to seeing you all, I’m getting the train too now, ticket all booked. I like the idea of changing your image up now we are the ‘new us!.’ I’ve decided to leave my fringe alone now, I think it is slightly asymmetrical but I’m not cutting any more off! 

Ive only had chocolate once this week so pleased with that although I wish the weight would come off quicker! 

Another bank holiday weekend, hooray! I’m going to collect my youngest daughter tom morn, she’s decided to come back for the weekend which will be lovely! 

Ive got a 10k race on Sunday and I’ve roped in a friend and my youngest daughter to bucket shake, I’m hoping to get a fair amount as there will be a large group of people in one space. We will see! 

I hope everyone else has a good weekend xx

Member

Re: Surgery May 2018

Phew! So pleased that you’ve got the results in black and white. 

C xx

Member

Re: Surgery May 2018

Yayyyy! Very pleased for you. I know you were told verbally, but there's nothing like seeing it in black and white. I have my mammogram this Tuesday. Hoping for good news too. Jane xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hello.... well drum roll...…. the letter arrived... hooray... strange really coz yesterday they said it would be another week and it must have been in the post all the time!  Phew...

Kip

x

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning, 

Well another day without a letter from the hospital.. its becoming my nemesis now... I almost jump on the postman.  Its crazy because I know its ok but still can't quite believe it until I see it.  So I rang the BCN this morning and they put me directly through to the Imaging Dept who looked it up and then gave me a scare as they said "it hasn't been checked by the 2 doctors yet" so may take another week.. which will be 4 weeks!  I panicked thinking perhaps the results weren't clear after all so then so quickly rang the BCN back who checked on line and said "yes it says - no sign of any malignancy"  its just they haven't got round to printing you a letter yet!  Phew.. for a minute there...

Michelle - have you had yours yet?  

I've just remembered to turn my calendar over to May and realised we are meeting next week...how exciting... that's come around quickly hasn't it.   What fun.  Still haven't shown my hubby my new jacket... will keep it as a surprise.. his face will be a picture I can tell  you.. funny how we never like each other's clothes at all... they say opposites attract don't they! 

Hows the hooping going Jean?  I did 10 mins this morning, been upping the walking too, managed 17,000 steps yesterday, all in the hope of shedding another few pounds... unfortunately Easter has got in the way this week I think.. too much temptation about the house at the moment.

Kip

x

 

 

Member

Re: Surgery May 2018

Well done on weight loss Kip. Wear what you like ... good to try something different and charity shops are the place to pick up something you may not otherwise try...without breaking the bank. Good job grey is an in colour for hair .... I started to see grey hairs coming through in my teens...always remember my friend trying to pull them out. It was always interesting putting henna on and seeing how many orange hairs there were 😂 

Michelle ... just have an asymmetrical fringe. It’s much easier than trying to cut one straight.... that’s my experience anyway 😆 Great you’ve only got one more Herceptin to go. Sounds as though you were having a busy day ... but good. How did it go? I’ve been keeping an eye out for volunteering opportunities but nothing that I’m interested is available locally at the moment on BCC/MacM although the local hospice may be looking for volunteers.  Well done for giving up chocolate. I’m with Kip ... I’m still eating dark chocolate but having to watch how much 👀. I used to eat more calories in biscuits so still happy I’ve not bought any. I’ve cut right down on cakes too. Just need to be more active. Good luck for your 10k.

Youve both reminded me that I need to see if my last clinic appointment letter is done and ask secretary for a copy... I always forget to ask for a copy to be sent when I’m in clinic. I think I’ve got copies of everything, even my initial biopsy histology.

Xx 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning everyone, hope you are all doing ok?

I've still had no letter from the hospital confirming the clear mammo.. 3 weeks tomorrow.. still want to see it in black and white.

Went out "charity shop" rummaging yesterday and bought a funky new jacket which I may wear to Birmingham meet up.. decided with my new "grey" hair I need to change my style a bit and this is definitely a new look for me.. think tapestry curtains and you'll have an idea.. doesn't sound nice.. but I thought it was cool...haven't shown hubby yet and am sure he'll hate it..actually does resemble our lounge curtains ..Smiley LOL

Hope the sun is shining for you all.. its finally found its way out down here...hope it stays out today..

Kip

x

Kip Community Champion
Community Champion

Re: Surgery May 2018

Wow Michelle.. Good going on quitting the choc... I haven't. I build mine into my diet otherwise I go mad and stuff my face..   Its so awe inspiring that u can run... My joints struggle with walking sometimes.   Enjoy the trial session... Its tricky to know what will hinder isn't it... But good for giving it a go.   Enjoy your evening out too.

Kip

Member

Re: Surgery May 2018

I haven’t had a letter yet either Kip, yes it is good we rang the hospital to Chase otherwise like you say the worry would be building up. Well done on the weight loss front, I am impressed and inspired. I’ve quit the chocolate (this is day 4) and already lost 2lbs which along with your reports of weight loss is spurring me on to continue. 

Jean I didn’t get to parkrun on Saturday, storm Hannah scupperred that. We have had a few trees down in the park, I’m glad the weather is calmer today. 

Does everyone know about sawing a bit off a chair leg to even it out well I’ve just done that to my fringe!!! It looks like a 4 year old has had a go! Bits of my fringe didn’t fall out due to the cold cap but lots did so I cut off the wispy bits, then it wasn’t straight so I tried to even it out, oh dear I wish I hadn’t started! 

Got a ‘cancer’ day today but in a good way. I’ve just had y herceptin (only one more to go!) Later I am going to a volunteering open day at a new Maggie’s that has just opened. I don’t know if volunteering there is for me, I’m not sure if I’m ready, if it will help or hinder my progress but I will go along and see. I’m also collecting buckets and t shirts from my cancer centre for my OH and friend to shake when I do a 10k race on Sunday. This evening I’m going to a Rhod Gilbert show called Hoof Cancer Where it Hurts. He raises lots of money for my cancer centre and there will be lots of the Nepal Trekkers there. Busy day, cancer related but in a good way. X

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning all, isn't it typical that the sun comes out on a Monday.. grrr.   Was a miserable weekend here (weather wise at least).  I did celebrate on Friday night, went swimming then had a bottle of champers with the hubby to celebrate the clear Mammogram... interesting still haven't had a letter yet though.. so glad the nurse did ring or I would still be waiting.  Still have this stiff neck business though...trying not to panic about that.. I think I've almost forgotten how it feels to not ache anywhere.. must remember the nurse didn't seem concerned just told me to "keep moving"...  good news on the weight front too.. have now managed to shed 1/2 stone... still got a way to go.. but definitely moving in the right direction.. although champagne won't help will it..Smiley Wink

Member

Re: Surgery May 2018

Fab news Kip ... enjoy the chocolate.

Michelle ... both you and Kip will definitely have a more relaxed weekend ... hope you get to your Parkrun tomorrow. Lovely that you caught up with the April ladies. Pm’s Work both ways. 

Xx

Member

Re: Surgery May 2018

Hey Kip

I am thrilled for you!! That is fab news for you and Michelle. Go and celebrate now!!!! xxx

Member

Re: Surgery May 2018

Thank you Michelle. So do I! Jane xxx

Member

Re: Surgery May 2018

That’s brilliant news Kip! Xx

Member

Re: Surgery May 2018

Kip that is amazing news! Now we can both celebrate, although it sounds like you are doing very well in your diet, 5lbs is great and has motivated me to cut out the chocolate (again!!!) 

Thank you for your message Jane, I know what you mean, we all like to hear good news as it gives us all hope. I hope you get good results in May. 

Jean, I have indeed met up with my chemo thread. We met in Jan and it was good to put faces to names. They were all further on than me, as you know chemo was my first treatment. However some are still having ongoing problems with herceptin/heart. I thank my lucky stars I seem to have faired well. I really appreciated your pm’s whilst I was going through chemo, it’s a lonely time. 

 

Both girls are back in uni now, so back to being empty nesters again. I actually quite like the peace and quiet! Parkrun in the morning providing hurricane Hannah doesn’t hit to harshly! Have a lovely weekend all, hopefully more relaxing now results are in! X

Member

Re: Surgery May 2018

Yay Kip !!!  Happy dance for you - and chocolate. Great news xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi everyone, just a quick update.. hospital just rang....its all clear!   Sooooo relieved, going to have some chocolate tonight for sure!   Thank you for all your support during this long week … you are all amazing..

Kip

xx

Member

Re: Surgery May 2018

Fingers crossed for tomorrow’s post Kip 

xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hello Jane, thanks for the good wishes.. still no post today!   My poor brain is trying to decide whether no news is good news or they are busy arranging further appointments before sending them out....I know that is completely irrational.. just gremlins taking over...Its a strange feeling to be thinking.. "this time last year" isn't it.

Kip

x

Member

Re: Surgery May 2018

Hi Michelle,

I have been checking in on these messages and was thrilled to hear your good news! I hope you get good news too, Kip. I just got an invitation to my mammogram for next month. I can't believe it will be a year on 1st May since I found the lump when showering. I hadn't even had my first mammogram. When we read good news like yours, Michelle, it gives us all a boost!

Best wishes

Jane xx

Member

Re: Surgery May 2018

That is fantastic news! Fingers crossed for you too Kip xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Brilliant news Michelle... Hope mine follows suit.   Go celebrate 🍾

 

Member

Re: Surgery May 2018

So relieved for you Michelle - good news day for you x  

Member

Re: Surgery May 2018

Excellent news Michelle x

Member

Re: Surgery May 2018

Just a quick post to say hospital rang and I have the all clear, such a relief as I’m sure you all understand. 🤞for you now Kip I hope they arrive tom. Girls going back to uni today and tom so lots to do will pop in for a chat soon. Thanks once more for your support xx

Member

Re: Surgery May 2018

Well done on your weight loss Kip. My weight has stuck even though I’ve still not bought biscuits ... have had other things though ...oops. If I can get a stone off I’ll be happy. It’s time I got myself looking at swimming gear too. Hope you get swimming ... I can imagine it helps with stiffness/arm. Your neighbours will be well impressed with your hooping ability.

Raining now .... going to do wiifit and hooping.

xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning... 2 big white envelopes arrived this morning.. heart palpitations... both from the Bank!!!  Nothing else to report.   Another day goes by....

I check in on the other chemo pages , I find it quite emotional seeing those just starting out as, like you said, it really brings it all back and its just so upsetting to think so many people get diagnosed every day.  I often pop into the "just diagnosed" page as well to offer help if I can... and that just reminders of the sheer blind panic at the beginning and how I first ventured onto this forum and met you all...thank goodness for that I say.  Its particularly sad when I see the "when will I lose my hair" posts.. that really hits home and I can quite believe that all happened..although looking in the mirror at my crazy mad hair at the moment I can well believe it.

I'm still managing to hang on to the diet.. its going slowly... 5lbs lost so far...another 12 to go...going to try swimming again this week I think.  Hooped today too Feenix...whilst standing at the window looking for the postman.. what will the neighbours think!

Hope everyone else is doing ok...

Kip

x

 

Member

Re: Surgery May 2018

I have to laugh Michelle because I thought I was going to end up in all the surgery threads last year. Managed to be in April,May,and August .... did pop into July too but I delayed my last surgery hence August. I did have a lot of support from the April lasses too but then gravitated to May. Wonder how they’re getting on. Sally G was on that thread. I hope everyone from your April chemo thread are doing ok....I used to pop on there just to see how things were going for you. Have you managed to meet up with them?

Well, it’s a bit dull this morning, and cooler as the heating has been on. I need to get out and walk as have been a tad lazy the past few days although I did hoop a bit last night. Back to yoga next week so I need to limber up before then. I saw the foob lady yesterday and she gave me a lighter one to try although I think I’ll be sticking to my original one as it’s a better shape for me. I can keep both if I want to. Wore the Boudicca bra and foob for the first time since last November. It set off a bit of nerve pain under arm/ side but I’ll keep going. Prob keep it for ‘best’ 😂... after my trial of both. I’ve ordered an Amoena bra from their sale ... much better price plus used discount code. 

Fingers crossed for your results ... by phone or post.

xx

 

Member

Re: Surgery May 2018

Thanks all, it is so frustrating. A simple thing that can cause so much extra unnecessary stress. I want to get off this ride too Kip! 

Paulus its good your appointment has arrived swiftly I hope your results do too and are good. 

Funny you saying you had a look at this years May thread I have had a look in on April chemo 19, it takes you back doesn’t it. Still I suppose that is a good thing, shows how far we have come xx

Member

Re: Surgery May 2018

Paulus ... good you’ve got your scan date so promptly... will be hoping for good results for you.

Kip and Michelle ... hope your results get a move on.

Ive just seen the May 19 thread ... took me back to ours last year, in the beginning.

xx

 

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Thanks Paulus... Good to hear you have a date, hope u won't wait long for results

Kip