Christine
Glad to hear all is well and always good when there's not much to report...
Glad the letrozole is not to challenging so far, I get to start mine post surgery.
Hope the knee is behaving and that Archie has been only eating dog food...too much to ask for?  One of my cats (the tom) was in a fight (this happens quite often as he's like me!) and had to spend £110 at the vets as he had a poorly leg a week after the scrap- blummin' animals eh?

Caroline
Hope your Letrozole experience is manageable too.  How's your pottery & prosecco pal getting on, hope she's getting the support she wants/needs

Am now on my 3rd course of antibiotics for the chest infection, it must really, really be attached to me as its proving challenging to shift and needs to have departed by next week as that's when I have pre op for surgery.  Yes after much hokey-cokeying I know what is happening re surgery,

So date is the 6th Feb and will be mastectomy on RHS and wire excision of ADH thingy (pre cancerous lump?) on LHS, given that they have to mess around with LHS still no idea why they can't just whip that one off too.  Luckily (??) my sister is still over from Taiwan then so will prove to be an excellent nurse...and by that I mean angel of death, Harold Shipman would have nothing on her should she have been in the medical profession.

Been told that really, really risky to have the plastic implants so looking like its a DIEP (as long as my stomach plays ball) on the NHS (given waiting lists could take 2 years to do all peripheral tidying up (symmetry, nipples) so am looking into going private plus it will be 3-5 days in hospital and not a fan of wards!  Its only a 6-8 hr operation!!!  Lovely eh?

Apart from many appointments this week have been enjoying having daft sister over and father down from Yorkshire, went into big London for yummy indian and to see Sandy Toksvig...always good when your cheeks ache after seeing a show I find, she was very good! And the seaside beckons today (love it in the winter, NOT in the summer when is full of idiots!).

Sam X

Hi ladies,

How are you all? I'm struggling at the mo, feeling quite low. Not sure why as it's not like me usually. Had a lovely weekend last week, in Dublin with hubby but I did find I felt tired earlier than usual when I'm away. My head seems to be playing ping pong with me at the mo. On one hand I'm happy to not talk or acknowledge the cancer but then on the other hand it's constantly in my head. I met someone at work the other day, who has had breast cancer 3 times! Now I know I should take the positive from the fact she was well and recovered from the third episode but now my brain is constantly thinking about it coming back!! I also went with a friend, to her hospital appointment yesterday. She has a rare cancer in the back of her nose. Even though they didn't really tell her anything bad, that seems to have knocked me. I'm not sure if it's the tamoxifen that is affecting my mood or worrying.   I'm feeling very tired - which then I start worrying about - is it the cancer come back?! I'm sleeping so deeply at night so can't understand why I wake up feeling exhausted. Sorry for the moan - I feel you have more of an understanding than people around me. I don't want them worrying or fussing, so put on my brave, cheerful face. 
Sam, how you feeling about your op next week?

Christine - how are you and how's that knee of yours?

Well, best get back to my housework!!! 
 

xxx

Caroline

Sorry you're feeling down, totally understandable given what you've gone through and what you're going through (hormone tablets and its still early days since treatment, plus you seem to already be supporting others who will be going through similar challenges).

Don't feel that you shouldn't feel like this, some worry about blummin' cancer coming back is totally understandable.  Although my sensible head says that if this is getting too much for you that (as I am sure you know but never take for granted) there is support available either through hospital or MacMillan....

We never know how we'll feel after quite a milestone in our lives and I know a lot of people feel the same as you do so don't feel that you're alone and we're always here to read (listen!) and try & help so don't feel like you can't share/rant/whatever!

All rosy here.  Can't remember where we got to but my surgery may be 6th or it may be 13th...no one knows, and if they know no one is telling me...I mean I'm only the blummin patient after all...

Done my pre op, physio, post care with BCN etc but am missing the crucial surgery date confirmation.  I've bought my bra, pillows (v & heart), drain bag so think I'm all set re equipment.  

I've faced the challenge of dunelm (never use their online offering-you've been warned!), I seem to have just has daily meetings over last 2 wks, I've started investigating what reconstruction may cost me if I go down the private medical insurance route (how naive to assume that the cost of reconstruction of RHS, symmetry on LHS and nipple reconstruction & tattooing would be it) given that on the NHS to get a set of decent knockers could take over 2 yrs (!!) and I've got over the disappointment of my work realising, 5 months after starting my treatment, that I have income protection insurance (and the insurance ceases end March!)...better late than never eh?  So its been quite a roller coaster (what's new?) over the past few weeks but luckily I love a challenge.

And talking of challenges had fun with my sister (over from Taiwan) and father (down from the north), am glad to say my sister seems to have avoided the coronavirus when in Shanghai en route to UK!  That would have been interesting on top of my chest infection (think the 3rd set of antibiotics finished earlier this week finally got rid of it once & for all...and about time).

Anyhoo enough babbling about me, Hope you're well Christine ( & that very naughty eating machine Archie) and knee is now bionic.

Enjoy (!!) the housework - am leaving mine for now so others do it for me post surgery (daft not to take advantage of my imminent predicament).

Sam X

Christine,

Sorry to hear you're finding post cancer treatment life a bit poo too!  Not being in this place yet I would imagine me to be swinging from the chandeliers as well as drinking copious amounts of alcohol but suspect things may be a little different when I get there. Anyway, like Caroline I hope this gets resolved one way or another.

I can't believe you've still got lymphedema still, it sounds that its relented somewhat but is still there, why are your support team not doing anything?  Having had my meeting re post surgery maintenance they were at odds to convince me that all fluid build up would be reabsorbed by the body...what they didn't state was how long it would take!  Do you just have to wait & keep your fingers crossed?  Can they not syringe it off (or whatever the term is)?  Interested to see of the exercises work and over what time.

And your knee is still pants too...you are not having a good time and am spending you internet hugs (timely as won't be doing that soon as will be too painful for me!!), bring on the pain meds eh.  Hopefully when that starts working then you can work on getting knee better?  As you can tell I'm not a knee specialist and only just about know where mine are.

How's the painting?  Seem to recall you'd be commissioned to do a picture for someone local...how's it going/gone?  I hope this is helping your state of mind although may be tricky given knee issue??

Yes insurance will be backdated, it could however take a couple of months to sort, and I am assuming I'll be covered, I mean how could they not cover a cancer sufferer? (I really don't trust insurance companies at all).  Yeah my hospital should provide shoulder bag & heart shaped pillow but my BCN is not the best at being organised, despite my nags so have ordered these on line rather than wait for her to maybe bring them to me on the day of my op (which she may not be there for depending on which date it is).

DIEP is lovely isn't it?  A 6-8 hr op, lengthy recovery and all those body bits used...am resigned to it now as want 2 boobs but can understand why only 17% of those having mastectomy choose to have delayed reconstruction...the additional op, the waiting times...there's a lot of compelling reasons why.  On the plus side I'd rather have the tummy used (and resulting tummy tuck - will miss my rolls as have been close to them for sooo many years) than things, bum, back etc.  If I wasn't so well endowed stomach-wise it would be a very different kettle of fish.

Are you sure your ear wax doesn't taste like roast beef as that dog obviously loves them, or maybe he just doesn't want you to hear, I suspect he'd be pretty rubbish at being an effective hearing dog given his passion in life is eating (things he shouldn't).  How sheepish was he when you sent him to Coventry?Love that your daughter has realised Archie is past it but you still have potential on the training front.

Glad we're still all in this together!  Have good weekends, mine will be dull and trying hard not to clean the house (not difficult!) so that my nurses/skivvies do all the hard work when here looking after me....cruel but I'm worth it!

Sam X

Hi ladies,

Thank you for making me smile and feel that I'm not going mad!! Like you, Christine, I do suspect the tamoxifen is playing a big part in my low mood and tiredness. Just hoping that once our bodies get used to them, things start to plateau off. 
Sam, the lady I met the other day had a reconstruction using her belly. I had the tissue from my back used. Apparently I didn't have enough fat on my belly!!! (Not sure she looked in the right place). But we are here to support you through the next stage. Milk the help!!

Christine, the hearing aid story did make me laugh!! And agree with Sam - earwax must taste amazing to dogs!! Sorry to hear that the knee is still no better but hopefully the injection will help. Also sad to hear about your friend. No wonder we worry about every ache and pain. I find myself googling my worries all the time, looking for the bad stuff so need to knock that on the head! 
Should have the joy of house jobs again today - washing, ironing etc. Hubby off out to watch rugby and all the boys have their plans, so just me and the dog left.

Enjoy your weekend ladies xx

Hello again, so soon, too.

Sam, the lymphoedema is not the same as a seroma, which is fluid filling up the empty space between the chest wall and skin, where your breast tissue used to be.  Apparently this does eventually re-absorb and can be drained off if not absorbing. The lymphoedema is fluid that is trapped inside the tissues like a sponge, which can't escape so can't be absorbed or drained off.  Mine is trapped in the scar tissue from the mastectomy.  I have seen a specialist lymphoedema nurse, who has given me special exercises to do that should help. I have to roll a wallpaper seam roller along the scar for a few minutes to soften it, then do stroking exercises to push the fluid to the other side, to drain into the lymph vessels there.  So far I feel it's a bit of a waste of time but I'm very obedient and will do them religiously!  My next appointment isn't until April.  However, I still have the seroma, too, which sometimes feels bigger than ever.

I am painting!  The portrait is coming along.  I have done an under painting, with no detail, in acrylic paints and then I will go over everything in oils and finally give them both facial features. At the moment I can see the likenesses, just based on shadow and highlights but it could all go horribly wrong when I start painting in the features.  Oils take a long time to dry so I am having to wait between layers or I end up with a muddy mess. I am pacing myself, too, so I don't get too tired.

Caroline, I am in awe of you not having enough fat on your belly!  I have a surfeit!  I have actually lost a couple of kilos, not just the missing boob, an additional couple.  I think it is because I have been off my food a bit. I can't think what I want to eat and then when I do cook, I can only eat half. I will be a long time before weight loss becomes a problem for me, though!

I have my appointment for the DEXA bone test, the week after next. I got a letter telling me my Vitamin D was low, so I have to see my GP about getting supplements. It can wait until I go for my cortisone injection on Thursday. I attended the gym session at the hospital last Monday, and am going again next week.  I can have six sessions, by which time I hope to remember what I'm supposed to do. At the moment I can't even remember what to do for the warm up.

Have fun, just you and the dog, Caroline, Sam make sure you don't do any housework!!

Christine xxx

Caroline
Hope the housework went well...lucky you!  Think I'll just capitulate to changing the bed pre my "I'm so pathetic I can't do anything" phase...

Christine 
Seroma eh?  There is so much to learn re this pesky disease isn't there and am sure I've been told but it obviously didn't register.  Anyway hope the regular massaging helps the L.
Your story of drying oils reminds me when my sister (who is arty, quite the opposite of me - in so many ways) did me some pictures before she went to Taiwan 15 yrs ago, she used that much oil paint they took about a year to dry - she's such an idiot!
This is also the woman who, when she's over here hires a car and when went to pick up car this time was told her license expired 6 yrs ago!  I ask you, and funnily enough she's hired cars in that period.  How can anyone be that badly organised?  I definitely got all the logical & planning genes.  So she's having to resort to the mega bus (not sure how its "mega" myself) whilst travelling up north and down to Southampton....might give her an incentive to be more like her sister!
What necessitated the DEXA bone test?  Given all the stuff in me am sure my bones are worsening (was osteopenic before cancer) - based on nothing of course!  But am keen to have some test to see whether that is indeed the case so can do something about it.  

Can't say I'm that chuffed about not being able to ride bike or go to gym for 6 weeks post op but don't want any (more) bits falling off or damage the sticky plasters that will be holding what's left together.  Walking it is I guess.  As long as am ready for Paris in 2024 then all will be fine...not sure which sport I'll be excelling at yet...decisions, decisions eh?

Oh and finally found out that op is (lucky) 13th!

Sam X

Hi Sam,

Dday approaching fast,eh.?  You'll be fine, if an old mare like me can bounce back, a fit young filly like you should be up and running, biking, etc in no time.  I started normal activities after three weeks, but your surgery may be more invasive than just lopping off a boob!

The DEXA scan was automatically ordered when I agreed to take the Letrozole, and the reason is that the medication can cause osteoporosis and they need a baseline scan to keep an eye on things. I don't think Tamoxifen has the same unwanted effects as it works in a different way although to the same end. I have refused to take the bisphosphonates to protect the bones because they only offer 1% extra chance of longevity and can cause serious side effects and I can't see the value. If you already have bone strength problems, however, you might be encouraged to take them.  I was surprised, yesterday as I returned from lunch out with my friend, to find a note from the pharmacy saying they had tried to deliver something to me and to call to rearrange  I was quite confused as I hadn't requested anything, so I phoned and was told it was my Vitamin D tablets!!! The health centre must have automatically ordered them when they got the blood test results- very efficient!!!

I can't wait for tomorrow and getting my knee injected. I take two codeine tablets at bedtime which help me to sleep, but I always wake up in pain when the heating comes on. Stupidly, though, rather than just getting up and taking more pills, I lie there, in pain, waiting for my alarm to go off. .???

I go for new hearing aids tomorrow, too.  I was delighted to get a phone call offering me an appointment only a week from my chat with the doc. I have been watching TV with subtitles, which is ok for pre-recorded programmes but live discussions bring some very peculiar sub-titles.  My little boxes are already in place in the spots where I have been known to leave my hearing aids for Archie to chew.

Enjoy your extra week pre-surgery, get your cycling and gym work done. 
 

Christine xxx
 

Thanks Christine,
Will ask my BCN re the DEXA scan and heads up re biphosphates noted as they have been mentioned.  My BCN nurse also mentioned oral chemo...great!  But often she's quite off the mark so am not getting too excited at this stage.

I can't imagine my surgery will be any different, its a mastectomy RHS and wire excision LHS (just found out they put the wires in the day before so will achieve my life goal of joining the Borg).  I will be taking it easy but will be looking to do a little more than just blummin' walk after 3/4 weeks...I'll go crazy otherwise.

So got my v pillow, my front fastening bra, a softie, a knitted knocker (great charity), shoulder bag for drain and small heart pillow so we're all good to go!

My main challenge this week has been trying to get sister back to Taiwan without going via China, as most flights do.  She was booked on a flight which meant she'd have to travel from one Chinese airport to another...best avoided I think, plus if she goes near China she has to be in self imposed quarantine for 14 days.  We tried to get her some masks (that her employers are insisting all workers wear) and the pharmacies over here are already cashing in, the cheapest work out at £1.50 each, in Taiwan they are now government controlled and charge a max of 3p!  Anyway the boyfriend managed to get some on (although I hate using it) Amazon so she'll be fine, although he did point out that she may as well just get some string and strap a tenner to her face...
So yesterday we went, whilst in London, to the airline she's flying back with (as they're not answering mails or phone calls) to cancel return leg via china to be told they've changed her flight anyway, still via different Chinese airports but now she can cancel as they've changed flight which makes life easier.

So fairly dull rest of week in run up to operation, am hoping at some point that they'll let me know the time and also when to be in day before for radiation injection though no doubt that will also be very late in the day too.

Was thinking of your dicky knees yesterday when on bike and could definitely feel mine...need to up my physio exercises (that I am rubbish at remembering to do except when at gym).  However given will be needing to to arm exercises for a while could add them on I guess...every cloud and all that!  Hope the knee injection helped.

I also think it's important not to disrupt the fabric of the universe by not getting up before the alarm...not had any toilet related accidents yet but its been close...

And I want to hear that the new hearing aids have no Archie dribble on them.

How are the oil features progressing?  Can't recall if I told you but in the sprinting of trying to be "creative" (well as creative as I can be - its got to have a practical edge) I have some cushions that need creating, this will be a job post surgery...lets see how many failed attempts it takes eh?  Zip or no zip is the question given only machine sewed 30 years ago and that was to put patches on jeans (that I was exceptionally good at!).

Caroline & Christine

How are you both doing re low moods? How long will you give the Tamoxifen if things are not/don't improve - as presumably there's other hormone tablets available?

Got, as well as insertion of wire & injection of radiation on Weds my 2nd zolodex which other than mad sweats doesn't appear (thankfully) to be giving me any problems...the Letrozole will need to be taken at some point soon I guess,  when were you supposed to start taking your hormone tablets?

Joined a facebook DIEP group but think I need to stop reading all the posts (some horror stories!) and just read one how you shouldn't/can't do any abdominal exercises for 18 months post DIEP surgery! Seems a long time and I like my pathetic attempts at building a none-pack!  Some good photos though of what's to come on the other side.

Need to make an effort to clean house before op but that said, think I'll have a sofa day today - its a little blowy outside....watch out Archie doesn't take off (what type of dog is yours Caroline?).

Sam X