Hi ladies!!

lovely to hear you have come back into the land of the living!! 
I reckon surgery will be a doddle compared to chemo!! In regards to menopause - I think I was peri menopausal before the cancer. I went to the drs in May, just a month before discovering the cancer, as I was constantly tired. My GP said that I maybe was perimenopausal but a blood test probably wouldn't show it as hormone levels would be up and down daily. I've had 2 periods in the past year but I do have a mirena coil in too. My bones show mild thinning so classed as osteopenia so I do have to take the adcal calcium tablets (not picked up yet).  Being back at work after 2 weeks off must of worn me out as the past 2 nights even the night sweats haven't woken me up and today I slept through 5 alarms and over slept!!  Good to hear you stood your ground at your MRI and took the chief nurse!! I think it does management good to see the problems patients face!! Well done!! (I work in a hospital so know how crap things can be.
We are here though, with advice of boob surgery!!

Christine, fingers crossed that the tens machine helps. My hubby has one of those although bought originally for a painful shoulder, he also uses it on his stomach to try and enhance a six pack! Living with pain in any part of your body isn't something we should have to put up with. Normality is going ok - but getting slightly peeved with people still asking me how I am, with the sympathetic tone or look!! I keep telling them that it was all last years problem and this year is a fresh new healthy one!!

Right, time for me to feed the troops so will shoot off!! Then I'm off to the gym again!! 
Caroline xx

Hi Caroline,

You made me smile about people asking how you are with that voice! I am glad to have my knee to complain about so they forget anything else.  

It was interesting to read that you went to your doctor about constant tiredness before you were diagnosed with cancer.  I didn't go to mine, but I sat for a good two months wondering why I was so tired and if I should make an appointment, thinking I must be anaemic or something, then I shrugged it off as old age and didn't bother going. I don't suppose it would have made much difference to the outcome if I had done.

My TENS machine arrived and I have been using it this evening.  It works while it's on but I'm still taking a pain killer before I go to bed rather than try to keep the machine on while I sleep. I can't wait for the knee to get better so I can get back to normality!

Cxx

Christine, if it doesn't work too great on your leg -try on your tummy! Then you will have a lovely 6 pack to go with your new boob!!! ;)

:

Ha! Ha! Which one? The dangly DD or the one that's not supposed to be there ?

I'm enjoying the sensation on my knee far too much to think of moving it. xx

Hi C&C 
Good to hear from both of you.

You'll be glad to know that my surgery (and beyond) question list now exceeds 60!  I have suggested to the BCN that she may want to go through before meeting with surgeon to ensure make full use of their, no doubt, limited time.

Went for my complimentary MacMillan massage this morning...lovely, I do like being pampered and will be missing my annual visit to a spa with girlfriends in Jan (its our Christmas present to ourselves!).  I have reiki next Friday and reflexology at some later date, neither of which have had before so should be fun!

Felt sorry for the poor guy though as all I did was yack on, not sure I got the full benefit but loved it anyway.

Its good that a sense of normality has returned and can do dull household chores and manipulate those exciting spreadsheets again!

Caroline - am impressed at your ability to sleep in, that is impressive.  Do you think you body is rebelling about having to work?

To finish up on my port crusade I sent a follow up note to the hospital CEO stressing disappointment & ignorant policy...I laid it on nice & thick, also that I'd be reflecting the stark contrast in patient care between the chemo dept & MRI dept so there's glowing & defintely not glowing reviews on NHS website appropriately and also I thought it was worth the CQC being aware too!  Think that's it on that one for now, am sure will find a new mission soon...more social injustice to right!

I'll certainly ask my Mother why she chooses not to get hearing aids on NHS, it never occurred to me.  On the plus side good to know for me as my hearing is rubbish, no doubt from years of having to listen to myself ...am not a quiet person!

So I think its just my feet that are still a little odd, my taste buds that have yet to recover their full flourish and skin that it still very dry in relation to how it was (as a teen used to get bad acne and until start of chemo still got the odd spot as have really oily skin, which as got older was v glad for as kept lines at bay but now skin is far from oily and apart from one odd chemo related breakout have had no spots at all...I miss them!).
So given taste buds still challenging and don't like convenience food (plus supermarket prepared food is so tasteless & often unhealthy) am going to endeavour to cook lentil daal & Bombay potatoes next week.  My spice rack will be looking very full indeed!  Will be freezing some for post op easy nosh too (I like to give the impression of being well organised...).  Wish me & my taste buds well as am not a natural born cooker (far too lazy and disinterested and would much rather others do the hard work and I feast on the output!).

Christine- am hoping that the TENS machine is having the desired effect (knee or 6 pack, maybe both eh) and that your pain is subsiding somewhat.  And was I surprised to read that that blummin' Archie had scoffed a hearing aid...not at all.

And snap with both of you, prior to my diagnosis I was really tired and also felt quite depressed (which is most unlike me) and I put this down to the cancer, there has been studies that show that as your body rallies around the cancerous area trying to sort it out it depletes your mental reserves and can cause these unwelcome effects, it was quite a relief to get the diagnosis to be honest!

Whilst Christine is on her TENS I will be brushing my feet this evening, was told earlier (by masseuse) that this will help stimulate nerve endings and help speed feet recovery!

Right bike ride tomorrow although am disappointed in this weather, it is far too blummin mild, when will we actually get some frost?  B****y ridiculous.

Sam X

So yesterday's meeting was very frustrating, had been told would get results of final MRI and date for surgery, was always under the impression that would have delayed reconstruction (as have inflammatory breast cancer) following mastectomy on RHS, also want LHS removed (it does have a benign pre cancerous abnormality which will need removal after all).

So was told
- MRI showed minimal residual enhancement...did ask several times but no wiser what this means other than its positive
- I may be able to have immediate reconstruction but it would need to be DIEP which, although I hadn't totally ruled out, is a much bigger op
-may be able to remove LHS at later date, but as DIEP is one time only offer (as can only remove stomach once) that messes up any future reconstruction on LHS
- surgeon needs to speak to radiologist about the mastectomy (again not sure why)
- given may be immediate reconstruction will be meeting with plastic surgeon
- still deffo having radiology which will damage tissue which is why can't have the plastic implants I was veering towards (bye bye dreams of being Sam Fox...)
- they're not sure whether I have inflammatory BC!

- there's now a rush-on as they aim to get surgery done within 31 days of last chemo which would be 27th Jan - only 10 days away!

On the positive side this surgeon does a frozen section allowing the sentinel nodes to be biopsies during the op so if need be the ANC can be done at same time.  

Left the meeting exhausted at trying to get my points over as to what I wanted and why, all I heard was well if its of no clinical benefit.  So it would appear that my options as far as the surgeon is concerned are....none!  And as for breast symmetry who knows!

Am going to call my private medical provider to see if can't get a second opinion as really feel that am being corralled into what the surgeon wants and am not sure I trust her to tell me what I should know that would enable me to challenge her further (she's very South African!).

The boyfriend (after I had a "chat" with him) was very good yesterday at backing me up and has offered (as he's a lovely idiot) to pay for what ever plastic/other surgery following all this!  Lovely man but shouldn't be necessary.

So the cancer merry-go-round shows no slowing for this northern lass yet...

Hope the knee is doing well Christine and that Archie has only been eating dog food (for a change).  Didn't get out for bike ride as chest was getting worse , was in A&E (again!, 4th time) Monday so now on even better and longer course of antibiotics, think they are are doing their thing (??) but still very out of breath doing everything.

Caroline - I'm supposed to be on adcal (for crohns) but was too tight to pay repeat prescription fee so got cheaper ones elsewhere but now have free prescription am going to go crazy and get them again.  Mine are the chewable and very natural tasting (I jest!).  Enjoy those!

Apparently I'll get a bone density test a couple of months after being on letrozole to see what impact it is having.  Still awaiting confirmation from BCN that I should wait till after surgery (despite what oncologist said) to start taking it...nice to know everyone is so joined up eh?

Had my first zolodex yesterday, despite a large needle it was fine so lets hope no side effects from that (still have tropical sweats from chemo so wouldn't notice anyway most likely).  Have a feeling that when I change bed there will be a human outline on the mattress topper where I have been sweating like a pig...nice eh?  Closest I'll ever get to anything like the turin shroud.

Did manage to do some "cooking", made some tarka daal which I think was ok, wasn't quite as nice as in indian restaurants but suspect that's because it didn't have 5 tonnes of ghee in it.  So my freezer is now chokka and still needs badly defrosting!

Sam X

Hi Sam,

Your meeting sounds as satisfying as the one I had with the oncologist! It seems like they only want to do things one way - their way!  Apparently, every surgeon / oncologist is God and what they say goes. 

Just looked up the minimal residual enhancement thing and it is sort of saying that your tumour hasn't got any bigger, it is something they test after chemo, but don't quote me!

Good that the sentinel nodes can be tested while you are under, that second op was harder for me than the mastectomy, as I have said before.

That thing about not removing the second breast until later is a Crock!  I was told that when I tried to get a double done. Now I have read that lobular cancer quite often returns in the other breast!  So if it does, I'll definitely punch him, even if I have to seek him out! To be honest, though, the symmetry thing doesn't bother me as much now I've got decent bras, although I'm still using softies as my non boob is still too large to be measured for a permanent prosthesis 

What is DIEP? Remove the stomach???? Dear dog! I have so got away with it as far as treatment is concerned!

I was told the bone density test should be done before starting Letrozole, but my friend who has stopped taking it because she felt so ill, has still not had it, and she's been on Letrozole since October, so I don't expect to get mine any time soon. I've been taking the demon drug for ten days now with no apparent ill effects, except that last night I was getting a new pain in my belly, above the navel, slightly to the left and my temperature spiked!  I couldn't find the new thermometer I bought last week so used a forehead film thing that registered 101.5F.  I took a codeine tablet as I went to bed and slept like a log.  My Fitbit showed no periods of wakefulness at all, which I suspected would be the case as I usually need to pee a couple of times but not last night! This morning I'm fine. Go figure! ( as my Californian great-niece and nephew would say)

I have just had a phone call from the Lymphoedema nurse with an appointment for next week. I have been getting feelings of tightness around my upper arm so I'm getting it checked out.  Also a big crease has appeared just where my armpit and non boob meet that wasn't there before, I think it's fluid but where it's supposed to be is a mystery!

My knee is much the same. I can walk fairly well some days, without too much pain, but then it is agony when at rest, other days I struggle to walk for the pain. I had some good news the day before yesterday, that Benenden had authorised another four sessions with the physiotherapist to take me up to the date of my NHS assessment.  The bad news was, my lovey therapist has broken her leg so I won't see her again. I saw a guy yesterday who only did ultrasound, whereas Mary used to give me the works, ultrasound,laser beam and TENS. However, he did show me how I should use my vibration board to help my knees, which is really good to know. There has been quite a lot of research that shows it can be very effective for knee arthritis!

Archie has had another go at a hearing aid.  I was making my bed the other morning and realised he wasn't in the room with me.  This is always a sign he's up to no good because Shelties are like superglue for sticking close when you move from room to room.  I immediately went looking for him and saw one of my hearing aids on the floor. Fortunately he hadn't damaged the actual aid, but had chewed through the plastic tube that goes in the ear. It was my fault for taking them out while reading, leaving them on the windowsill near my chair and forgetting he could reach them.  I need to phone Specsavers to see if I can just pop in and get a new one when I get my next batteries, or if I will need to make an appointment.  I am so, so, sick and fed up of appointments!!!

I had a surprise the other day, I have been commissioned to paint a double portrait for a birthday gift for the grandson of the  'sitters'. I say that loosely as one is dead and I am using a photo as my source.  It has actually sparked interest in me for the first time in ages and I am already thinking of composition and materials etc. 

Caroline, in the nicest possible way, it is good not to be hearing from you as it means you are living your normality!!! Yay!! I wish humdrum and normal for everyone, rather than the drama of the big c.

Take care, ladies,

Christine xxx

Hi ladies!

Sam, what a ***!!! I had a partial reconstruction but they used a flap of tissue from my side/back. My scar now has faded so well!! - bio oil gel and moisturising cream - Aveeno.  But good re testing your lymph nodes during surgery - I had that. Luckily I only had micro metastases so hence no chemo needed.  Hopefully they can all come together with a plan that suits you!! I've finally picked up my adcal. Loving the fact that we don't have to pay for medication! But to be fair - I've never had regular medication to take before!! But you've smashed the chemo - I think that must be harder than surgery!!! My friend has just had her third chemo and said one of the strange side effects is a type of vertigo!! Apparently it's due to the loss of hairs in your inner ear! 

Chris - funny what you said re lobular cancer as that's the type I had. I didn't realise that it was quite common that it comes back in the other side!! My worry is also that it doesn't show up on a mammogram. I'm assuming when I go back in April, that they will do a mammogram but I might ask if they can also do an ultra sound too.  We asume that consultants/oncologists/surgeons all know what they are doing and to be fair, they do a wonderful job but I know it all comes down to money - so mimimum procedures. 
 

Ive just been to my youngest son's parents evening. Had quite a few parents, who I know but haven't seen recently, all ask how I am, that I'm looking well!! That's because I am well!!! I went out with my breast cancer buddy on Saturday. We went pottery painting but drank Prosecco while doing it! It was absolutely lovely and when we chat, she knows exactly what i mean in relation to feeling/worries etc. We said how we are only now really processing everything. She is struggling at the mo, so I've told her to contact her bc nurse to ask about the Moving Forward after breast cancer course.  Think I'm still doing ok mentally. 
But we are all a lot further down the road and syill surviving and living so cheers to that!!! 
Caroline xx

Both

So good to hear from you both and Christine you're a much better googler than i am...don't think am patient enough and generally assume that most results are rubbish so thanks for the MRI results (we'll make a surgeon of you yet!).

Good that knee is no worse (always focus on the positives) and had forgotten your original picture of the painting of the 2.5 shelties, great your getting back into it ,I do often think that something arty would be nice and then I remember that a) I have no talent b) I have no patience and c) I'm an accountant.  I'll stick with painting my face and trying to achieve eyebrows that don't look too daft (usually they achieve no more than a 7/10).

I've been reflecting on yesterday and though still blummin annoyed (and much worse non CR swear words) think maybe most of it is as I can't get my way, and life doesn't always work like that...will still however carry on trying of course! Have a meeting with plastic surgeon next Thurs and am thinking as there's too much going on (and too much change and potentially rushed decisions) may well delay reconstruction anyway, it does mean the reconstruction won't be quite a good as if done immediately but will get them to explain how if differs, also if I get it delayed may be able to get both done using my own tissue (yep, stomach...yuck!), only downside is that I want to get healthy and get back to my normal weight which would mean belly roll will be a lot less....argghh!!  And really wouldn't want/can't bear the thought of being marmalised anywhere else...may change mind of course.

Love the pottery & prosecco (well thought of anyway, still can't face alcohol), think its great that you keep in touch and provide much needed support.  Its funny that you just don't know how you'll feel when all treatment is done, guess I'll see in due course eh?  I'Ve seen the course you mention on the MacMillan board, do wish your pal the best.

Sam X