I have just been diagnosed with stage 4 secondary liver cancer. I felt I was in free fall whe I was told a few ago. I want to run but I can't.  We are a member of a club we do not want to be in and yet more that a third of people will get cancer. It's terrifying. I'm finding hard it to be the sick one too. I'm the fixer and doer in my family and I can't get used to not being that person any more. 

I wish you good luck with treatment. I also find Maggie's centre invaluable for counseling at the moment they have save me a few times ️

Hello 747, my heart goes out to you, I can feel the free fall you are feeling. Thank you for taking the time to write to me. I wish you the strength to bear this without such anguish and hope you find the support you need. x

Hi Christine,

Wow! Pleased to hear you had a wonderful time at your son's, but more pleased you have decided to give the medication a try! Another part of the process/journey we can do together. I have put my medication in the bathroom and have been taking it when I clean my teeth. Managed so far to do it daily! (Only been 3 days :D)

I am also back to the gym tonight!! Onwards and upwards!!

Caroline XX 

Hi, 

I've been told by a friend that she takes it after her evening meal, as she feels less nauseous in the morning that way.  I'll just have to work out what's best for me!

Congratulations on going back to the gym. It's not my idea of fun but my son's partner lives for that, and running! Actually, I'm going to ask today about an exercise class run by the hospital physio department. My therapist mentioned it at my first visit, and now I'm back to normal, except for the knee I think I should sign up.  I think it's just a six week course to get going after the surgery etc.

Cxx

Hi

Just a quickie to let you know am still in the land of the living though don;t feel like it.  For those who watched Dracula I look and feel like Jonathan Harker post leaving castle!

Will write more when have some enery......soon I hope...

X

Hope you feel better soon. Take it easy until you do! 

Cx

Ok, I'm back!

Someone thankfully flicked a switch overnight Monday so yesterday felt human again and comfortable in my own skin...always a plus I find.  Timing was good as well as had my (please let it be) last MRI, this took 3 hours as had raised with the hospital CEO about radiology depts unwillingness to use ports to deliver contrast.  Both my hands hurt so I refuse to have them cannulated and it always takes at least 3 attempts to find elusive veins, a joy for me and the radiologist (and the consultant they eventually have to call to do it!).

So I was accompanied by the hospital deputy director of nursing who also experienced first hand the refusal ( on no solid grounds other than unwillingness to challenge the norm and invest in some training/education) of the radiology dept to use suitable equipment (my port) and make life just that bit nicer for the patient (crazy eh?).  Anyway feel like I've achieved something as the radiology chief auto-bot (catch phrases "no" and "its policy") promised to review their outdated policy - and I made him look me in the eye & shake on it too.  Luckily the dep dir of nursing is on a similar mission so something will happen for future me's.

So had an uneventful new year (never a big thing for me) as was in zombie mode.

My mission today is to gather the 30-odd (I may have overdone it) questions re surgery into some sort of order, I'll be nothing if informed.  And Christine your experiences have been really useful in this respect so thanks again.

So we'll see whether pesky lumps are still with us at meeting with surgeon next week, am not really sure the implications of whether the lumps have dissipated or not - I mean they're still going to do the mastectomy.  The boyfriend will be with me at meeting, always a challenge as he's not comfortable with anything medical.....am sure he'll be a great help!!!  And as am a terrible partner do quite enjoy watching him squirm, and some of my questions will definitely have that effect...

Christine - how's your Wallee life? (Love that film and do think it will be reflective of our future - in a lot of ways already is!). Is the TENS machine working yet?  Do hope you get some knee relief soon and hopefully its improving now you're free of your son's (still cream??) stairs.
Your plight re hearing is like my mothers (I was amazed at how much hearing aids cost!) but she is quite insistent at having the volume so high so the house shakes & my ears bleed, apparently her hearing aids need their tubes cleared or something and luckily for her unlike your son (who's just like the boyfriend, boys & tech eh) I am far too tight to have such expensive TV equipment....mind you mine is all hand-me-downs form the boyfriend (too tight to invest in something so trivial myself).
Am glad that, despite the naughty stairs, you were very well looked after.  Cream carpets always a bad idea in my book (how impractical?), better to get something more cat sick coloured I find personally.
Interested to hear how you get on with your bone thinning strategy as have early osteoporosis and am keen to keep dem bones in good density and know that the hormone meds that am soon to take will not help, am hopeful that calcium and exercise will help but we'll see.  Back to gym with Caroline and cycling from tomorrow...
Not sure if I mentioned but from Monday will be on Zoladex (to dry up ovaries as not sure whether am in or post menopause, I think post as no periods since March) and sometime soon Letrozole is my hormone drug of choice so am with you both (will however be ensuring that I take a full box on my travels Caroline!!).  

Think I'll be glad to have hormones dampened (though am not at all sure how these things work) as following the chemo have become alarmingly over emotional (not like me at all), especially when reflecting on lovely things that people do.  Nearly had an episode whilst telling the matron of chemo unit yesterday how fabulous her team had been, she was really worried it had all got too much and I needed someone with me at the MRI...bless her.  Thankfully my (superglued) false eyelashes held in there.

Happy lack of hormones eh??  I hope they're kind to us all.

Caroline -  Your Mum had a go at you about alcohol consumption eh? cos you're only 16 and not a grown lady after all, and after all you've been through I'd be welcoming a week of being legless, never mind a wee bit merry for a day.  Mothers however can be from different generations and am sure she only had your best (liver?) interests at heart.  Thankfully both mine can, and often do, drink me under the table ( am convinced they suffered during prohibition and have been making up for it ever since...).  Bunch of lushes that we are.
I am planning a week (when feeling up to it) of living on copious amounts of alcohol (from breakfast through to night cap time) blue cheese and pate....I will warn the local A&E beforehand to get stomach pumps at the ready.
Hope you're enjoying your "normal" life (often under-rated).

Sangha - Hi and although chemo was quite challenging at the end up till then I had very few side effects, never was sick or felt nauseous.  It was just at the end when I felt the cumulative effect of the treatment and bear in mind everyone is different, I know people who have sailed through it.  I lost a fair bit of my hair but for me that's not important (and I look quite good, as do a lot of people, with very short hair) I just got sick of it falling out and not being able to style/wash so had it shaved off...a good decision for me.  
I certainly second Caroline that having a positive disposition will really help, use it as an opportunity to chat to cancer support staff and patients, I really enjoyed this aspect, especially as am far too gobby for my own good.  Also do use friend and family support, people will amaze you and I hope will support you in challenging times.
Good luck with your treatment.

Right enough from me, time for a lovely shower (oh dear its gone midday).

Sam X
 

Hi All,

Glad to have you back, Sam. Before I forget, for your mother, you can get perfectly good hearing aids on the NHS.  You require a referral from your doctor, first, then you get to choose where to get your hearing tested. You can go to a Specsavers.  Full audiology tests and digital aids tailored to your own hearing.  All free, plus ongoing free batteries and tube cleaning etc. for three years. You get tested again, then and continue. The alternative is to go to your hospital audiology department, paying hospital car park charges and waiting times. My friend's husband went down the hospital route at the same time I went to Specsavers and we have identical aids, plus when he lost his after a drunken dinner party and I had mine chewed to destruction by Archie, we both paid only £68 for each new one.

After all you have gone through so far I am sure you will find the surgery the easiest part of your treatment. Recovery from the initial surgery will be fine.  You might find your reconstruction a bit harder, but just think what you can do with your pert little boobs. Go topless on the beach, be a page three model, (do they still have those?) and buy shirts that button down the front without having to worry about gaping!

If you already have signs of osteoporosis you may be offered something different to Letrozole as that is a bone killer. Or you might have to have the bisphosphonates that will protect them. I've said I don't want the bisphosphonates but if my bones start crumbling I suppose I will have to now I've started on the Letrozole. That's why I want to find other ways of improving bone density.

Zoladex, lovely - instant menopause! Hope it's not as bad for you as my  instant one was.  I was on HRT then I was advised to stop it because of the risk of getting breast cancer (Ha!)  I agreed and stopped it, but I was told later it should have been tapered off, not just stopped. The result was a short but very traumatic menopause. Just have plenty of sheets around as you may be changing your bed every day, I couldn't believe anyone could sweat so much!

That all seemed just for Sam, now for you all, more generally 

I've been to the physiotherapist today for my knee and had the works, ultrasound, TeNS and laser treatments plus massage and exercises. It felt great when I left with orders to go straight home, have a cup of tea and put my feet up. An hour later it's started hurting again  She has suggested I go to the docs and ask for something to keep me going for the six weeks until my NHS physio appointment, possibly a cortisone injection.  The last one I had on the other knee a couple of years ago worked wonders, so I hope I can get one for this knee because there is nothing to make you feel old like not being able to walk!  

I have ordered a TENs machine that is due to be delivered this afternoon - that, at least,  will stop the pain and I've ordered one that I can move around with, that might be enough to keep me going. The physio said I can keep it on all the time if I want, you can't overdo it, apparently. I hope I'll get some housework done then, I am just doing the bare minimum at the moment and I made such good plans to start clearing out the clutter I've accumulated over the few years I've lived in this house. 

Day three of the Letrozole, so far so good, but I expect it takes a few days to kick in, I'll keep you posted re side effects as I notice them.

C xx

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

:

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

Hi Sam, Hi Caroline

 I have nothing much to report, just like to check in with you both. 

i have recently had a few of the temperature spikes I mentioned, and I now realise they are hot flushes, from the Letrozole. I was telling my daughter about the first one and how my temp had gone up to 101.5 and she was quite worried because she had read that hot flushes don't mean a rise in core temperatures- just skin temperature that can rise by up to 5 degrees.  That's when I remembered it hadn't been a thermometer I had used, but one of those forehead strips, so it was my skin temp, Next time it happened I used a thermometer and the rise was only slight, so I am just going through my second menopause.  Actually, if I only get hot flushes I can cope!

Caroline, you sound to be getting on with life - good on ya, girl!

Sam, keep us informed as you take the next step. I'm sure with your strong constitution and fortitude ( aka bloody mindedness ) you will be fine.

Christine xxx

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

Hi ladies,

I'm sorry to hear you are down in the dumps, Caroline, I think I'm going through something very similar. It doesn't matter how hard I try not to think about cancer,it is there in front of me at every turn.  I am blaming the medication, though. Anything that can screw your hormones to the extent that these effing things do has got to be to blame for messing up your head, too.  I am also very fatigued, all the time, which is no biggie for me as I only have myself and the dog to look after but it must be really horrible for you with a job and family to think of.  So far the tiredness and some hot flushes, slight headaches and tummy troubles  have been the only physical side effects of the Letrozole, I think so, anyway. Fingers crossed it stays that way. Having said that, my pert little A cup non breast has lymphoedema in the scar tissue, so I now have another set of exercises to do every day, and I may never get a permanent  prosthesis to fit me.

 Whinge time, so you can skip the next paragraph if you wish. I'm still suffering with my knee, and this week the physiotherapist refused to treat it because it was so warm and swollen.  He called my doctor and got me an appointment for the same day ( something I couldn't have done) and I now have a referral for an X-ray on it, and an appointment to have a cortisone injection next week. The last injection I had, on the other knee was miraculous in killing the pain  I had been to the doc on Monday because of the pain and just got a prescription for codeine, which blows my mind, so I only take them at bedtime so I can sleep, but last night I was wakened by the pain and took two more at 3am.

Sam, will you get back dated insurance? I hope so!  It must be very frustrating not to know the date of your surgery, you are certainly well prepared. All I took was a huggy pillow and pj's. The hospital provided the drain bag. I'm glad the chest infection is gone, they could postpone your surgery yet again if it hadn't.  I had a residual cough and the anaesthetist made a special concession to allow mine after examining me very carefully.  Apparently they don't like us coughing when we are unconscious!

i found out what the DIEP (?) is, YEEEEUK!  I'd rather have a flat lumpy chest any day!

Archie has blotted his copy book again. Again with my hearing aid. I have now asked my doc for a new referral as they are not giving out the same model any more, and rather than have them rooting around in the different stores to find me an unused obsolete one, I would prefer the new model.  My daughter has bought me a set of little plastic lidded pots, to keep one in every room, so that whenever and wherever I take out the hearing aids I will have a sealed container to hand, to keep them in. She says it's no good trying to train Archie, so she's training me! I was so upset when I found what he'd done I couldn't speak to him for hours, that's definitely the Letrozole!

I was sad to hear, yesterday that my friend, Gladys, the lovely lady who had her mastectomy the same day as me, who resembled my mother at that age, has been called for more bone scans since her Dexa test, as they think her cancer may have spread to her bones.  She has had terrible trouble with her hip since her surgery, and also had to stop taking the Letrozole as it made her feel,so ill. I'm really sad for her. 

Take care, both of you. Sam, we'll be keeping everything crossed that you don't have any more messing about, and get your surgery over and done with ASAP.

Caroline, I hope you feel better, soon. And please feel free to whinge and rant as much as you need to, it does help, having someone who knows exactly what you are going through, you and Sam certainly help me. 

C xxx