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

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

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

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

Hi,

You are impressively organised, although you have been waiting for this for a long time. I certainly had it easy just going straight for the surgery.  They wanted me to start the Letrozole two weeks after my second op, but I managed to avoid it for another six weeks or so.  Now I think I might be getting away easily with that, too, as my side effect symptoms are minor compared to the pain I had in my knee.   Pain, which I am delighted to say, is considerably diminished since Thursday. My wonderful doctor injected both knees and I woke up on Friday morning pain free!!! It still hurts a bit now and then but nothing like it was before. I think my knees are going to send him a valentine card!  In the afternoon I had to go for the new hearing aids and do some shopping so I didn't rest the knees as much as I was supposed to, but I am 90% better than I was so I'm not complaining.  I am so much better that yesterday Archie and I went for a long walk up the lane at the end of our cul de sac, leading to two fisheries, several fields of sheep and ending up at the deer farm.The horses have been taken indoors for the winter and there were only six deer outside, the rest were probably in their covered shelter, sensible creatures.

My new hearing aids are amazing, I can now hear myself saying words beginning with 's' whereas before I had lost all such high frequency sounds.  I don't need subtitles on the telly and the volume is down to normal!  The aids are being put away, religiously, at night and stashed on top of the wardrobe, way out of Archie's reach. I hope I remember to do that every time I remove them.

I had to go to a different hospital the day before the surgery to get my radioactive injection.  It was nothing, I didn't even go blue!  I had a letter telling me to phone the ward at 6pm the night before surgery to find out when I needed to go in. I was quite surprised the first time when they said come in at 8o'clock, we were in the pub!  By the time I went for the second op it was old hat. 

It was lucky that your sister came over when she did, she or she could be languishing in quarantine in China already. What a palaver getting her flight cancelled.  What are her plans now then?

My painting still has very vague features, in fact the man's have been wiped out as I realised I hadn't made his face quite long enough. He's wearing a smart jacket now, a decent shirt and a half done tie. It has a pattern on it that will need a small brush and steady hand to get even a rough likeness, so I will wait until everything else is finished and dry before doing that. The lady still has orange hair and vaguely recognisable features, not that they are hers, necessarily. Her jacket now looks ok but her dress has a pattern that I'm going to struggle with.  I might use artistic license and give her a different dress altogether. I'm only going to start her face and hair after her husband is done because he is easier to get a decent likeness as he has strong features, whereas she is quite pretty, not what an artist wants to paint, at all! I have to wait another day or two to see if today's efforts are dry.

Today I thought I was going to get away without walking Archie as every time I opened the door and offered him out he gave me a look and went back in. However, there was a window in the cloud for about half an hour and we went for a short walk. There was a lot of debris on the main road from old trees that border one side but the rain held off until we got blown back indoors. He looks funny in the wind with all his hair blowing in all directions.

Enjoy the next couple of days, and I hope all your preparation makes things easier for you come d-day.  If we don't hear from you before, all the best for your surgery and hope to hear from you after the event all bright eyed and bushy tailed.

Christine xxx

Hi ladies,

So my mood has lifted and feel ok again, just constantly tired but I can live with that. Might mention it at my 6 month check up in April, if still happening then.

Sam, count down now!! Are you feel a bit apprehensive? They were going to do the wire insertion before my surgery, which I was worried about but then there was no need as the surgeon was confident that the lump was big enough for her to find. 
My dog is a springer spaniel. He is 9 years old and quite a lazy but intelligent dog! He's a proper mummy's boy. 

Keep us informed with how it goes on Thursday! The day after my surgery I felt like pants, but due more to the anaesthetic I think. By the second day I was out walking the dog and making jam! I joined a fb breast cancer group but left after a week as I found it too depressive!!! I didn't want to hear all the awful stories and wanted to stay positive, so left. 
Christine, how wonderful to hear that your knee is so much better!! And that your painting is going well!! Good news about the new hearing aids too - just make sure you remember to put them away!! 
My hubby is taking my 3 boys away next week, snow boarding until next Sunday. I don't do snowboarding as broke my arm at the local practise dome!! I will miss them all terribly but will be in bed very early I reckon.  Then I'm off to Iceland in a couple of weeks, for a friend's 50th. So busy times ahead!! 
Take care lovely ladies and look forward to hearing your news soon.

Caroline xx
 

Hi Caroline, 

I find my mood has lifted since my knee stopped hurting so much, but, like you, I feel desperately tired. If I can get my *** into gear and start doing something, I'm ok but I could sit on it all day before it can move. I am sleeping very well, so that's a positive. I'm using a Fitbit that my daughter passed on to me when she got an upgrade. I only use it to see how much exercise I am getting in a day and how much sleep I get at night. My daily step count isn't fantastic but it is improving every week.

i am shocked to hear your Springer is lazy, is it just his age? When I had one I couldn't tire him out. I never knew such an active dog. They are smart though, not like my dozy bones Archie, who isn't interested if it isn't edible or expensive to replace.

You'll be able to rest a bit more when the family are off on their jollies. It sounds like you are really getting your life back together and it's good to hear.  I'm getting there, too. Now my knee is less troublesome I shall be doing far more then I have been.

Christine xx

Hi Sam,

Just wanted to send my love in preparation of tomorrow's surgery! Have everything crossed it all goes according to plan!! Hope the wire thingie went ok today!! Let us know how it all goes and how you are.

caroline xx

Hi Sam, 

Just wanted to send my best wishes for tomorrow, You might already be in hospital as I write this, so get your eye blinds on and earplugs in or you won't get any sleep, as you know. 

Look forward to hearing that everything has gone ok and you are facing the world in your own inimitable way!

Christine xxx