Hi

i had a similar visit 5 days ago, except I've never been through this before, I'm still waiting on CT as my lymph nodes were also affected 

I don't know how I'm meant to feel, I just feel like I need all the results now and the wait is excruciating 

I have a 3 week wait for CT due to coronavirus although I am on an emergency cancellation list

i would welcome any advice at all on how best to deal with this, I'm 43 and have 3 young children 

xxx

Hi AMil,

I am sorry to hear you are joining the club no one wants to join!! I think my advice would be to always try and remain positive. Medicine has moved on so much that breast cancer has a really high survival rate - in the 90%'s. Talk to people - friends/family or even us. I found that people who had been through/were going through BC had a better understanding of what I was going through but my friends and family were still amazing. Try and keep busy, between appointments. Waiting for scans/results is definitely one of the hardest parts!!! 
Remember, this is just a 'blip' The 3 of us all had very different journeys but we were there to talk about it and share worries and advice. Happy to do the same for you.

Caroline

Bionic Christine & Cool Caroline

Good to hear you are both doing well with Christine's new abilities to not ache and vault over buildings and Caroline's now frosty bedroom and husband who now resembles an Inuit.

I finally had an "event"!  Whoop, whoop.  It wasn't quite the event I wanted but still got out of the house somewhere nice, went to Wisley (RHS) which is near me down here, terribly middle class dahling but the plants are sooo lovely and the lovely Adrian made us all some scrummy sarnies (why do they always taste so much better when someone else makes them?  Probably as Adrian is not a tight ar5e who overloads them with fillings & butter..).  But of course it was Saturday when it rained all day, my hands were sooo cold, luckily I'd taken a scarf (more for if the sun came out to protect radiated skin!) so didn't get hypothermia but not being dressed for a Yorkshire summer didn't dint my enjoyment.  But by heck was I absolutely jiggered after 2 hrs of just aimless wandering!

So arm pit is still annoyingly red & sore (my friend says its my baboon's ar5e) still...its got to calm down at some point surely?  I never realised what a sensitive soul I am (ha!!), I blame those darn emotions (again).

I've also discovered this morning that some evil insect has bitten all over my neck, looks like a vampire tried to induct me into the clan last night...think I may have to de-flea them cats...

Am glad that your kids are so overly protective Christine, they'll have you living till 100+ whether you like it or not! Admittedly it may involve literally wrapping you in bubble wrap for a number of years in an oxygen tent! How many face masks have they bought for you?  Adrian bought me one but haven't needed it yet, doesn't mix well with my lip gloss!  Its so disgusting when I take the ones off that are given by hospital and they're covered in foundation...they're like a mini Turin shroud after I've done with them.

Can I ask - do you both still do the post surgery arm exercises you were given? My BCN tells me I still should do them 3 times a day which sounds a tad excessive as my mobility is great, she tells me its more the higher risk of lymphodema (given ANC) but 3 times a day! 

Just as well I chased those bisphosphonates as had slipped through the net, chemo ward was waiting for BCN referral and BCN were sending me to chemo ward...love going round in circles!  Anyway hopefully should have first one with zolodex at beginning July (think my veins are ok now thankfully) so that will put me out of action for a week or so and then should be fit to go back to work in some capacity (boo!).

Christine- like you my sister is very arty and she did some lovely (abstract) big pictures for me about 15 yrs ago but as she has no sense (its a genetic thing) she put on that much oil paint that they took about a year to dry - what an idiot eh?  Anyway they now adorn my living room & bedroom, love the individuality of them...and the fact that I didn't have to pay shop prices for them of course!

You'll also laugh that I entered a raffle recently and won some cushions!!  Still determined...

Alison - if you're still following hope our messages helped and that one of those CT cancellations came through.

Right stay safe ladies.

Sam X

Hi Sam,

I don't know how I missed your latest message. I only came on today to have a whinge!  My appointment for July 8th which was supposed to be my very late six month check up has been relegated to the telephone again! I'm a bit p'd off because this appointment was made after the previous cancellation in April.  
I'm sorry you are still having problems with your underarm, I'm afraid that might last for a while. I'm not sore under there now, but all round the area feels tight and uncomfortable and there is a spot in front, where my swelling starts that is still tender. 

I'm happy about being able to have a support bubble with my daughter now.  She has been bringing my shopping and we have had conversations at the social distance but it was lovely to be able to hug her again.  She came for Sunday lunch and it felt lovely and normal to be able to sit indoors and just relax.  She hasn't bought me a face mask because she has no intention of letting me out into the big scary COVID world!  However, I was very surprised, last week to receive a  hand written letter, who does that any more? It was from the cousin who commissioned the double portrait, she is a very clever sewer (person who sews, not drain pipe!) and she had sent me two masks that she made for me! Her mother who is my friend is already venturing out with her mask on.  I was talking to the mother yesterday and she was really going mad with the lockdown as they live in a very isolated position with no neighbours to chat to over the fence so she was desperate to get out again.

I have to admit I'm not still doing the arm exercises, although I still do the lymphoedema exercises for my boob.  My arm feels tight from underarm halfway down to the elbow but my range of movement is perfect. I still massage the arm sometimes, when I think on.

Good luck with the bisphosphonates, I refused them because the prediction only gave a 1% improvement in my survival rate, which didn't seem worth it for the possible side effects, at my age. Are you having the infusion? My friend had one after she broke her hip, and she felt really ill for a few days afterwards, but she's fine now.

Will you be able to go back to work, or will you work from home?  My daughter is an accountant in an educational trust and has been working from home since lockdown and they may decide to continue this after normality comes back because the central office building they use costs a lot of money and the CEO is conscious of the cost while no one is working there. As the adaptations to the schools in the trust will be very expensive to ensure the children's safety, he may decide to lose the central office.  My daughter is hoping they do because her migraines have reduced considerably since she doesn't have to drive in to work every day and she gets far more work done now there aren't all the interruptions you get in an office. 

I did laugh when I read about your raffle prize! Determined? Ha! No chance!

i think I'm going to try and change my profile picture, if I can remember what to do.  I am really happy with my painting of the Heeland Coo, so I want to share it. Everyone who has seen it says they love it, and I love it, not for the fact I painted it, but because it's a happy scene.  I can't remember where I got the reference photo from, but it made me smile. I'm working on a new portrait of the dogs, only the two now, not two and a half! I have found the wonderful Alkyd oil paints that dry quickly, so I won't have to wait forever for the paint to dry.

Hi Caroline, if you see this! Hope you are ok.

Christine xxx

Christine
You didn't miss it as you've just answered!! You'll be glad to know my armpit is a bazillion times better, although the lack of skin soreness means that the underlying discomfort is now noticeable again!  Ha!! This could partly be due to the fact that I may have (!!) overdone it on Monday's barre session with tricep exercises (no blummin weights though- how rubbish is my duff arm??). I do however think that the area below my armpit and seroma below are still creating some discomfort which is annoying but does not stop me doing things (though am still tentative about lifting heavy stuff, like a big bag of compost).

Its so annoying when these after effects hang around isn't it?  If things like the above & your lymphodema would bugg4r off we'd all be much better for it eh?

All splendid here, even went to visit my old dear near Caroline, in the New Forest, last week, told her she wasn't allowed any hugs ( I don't want to get all Typhoid Mary on her) but I was more than happy for her to feed me - did I mention that I am an accomplished glutton? Good to see her, and abviously made her week by talking at her for 3 hrs (think she needed a lie down afterwards, never mind my needs).  I must say it was a delight to see the M25 so well behaved, I don't think I've seen it like that even on a Sunday for over a decade.  I'm glad your bubbling with your daughter, makes like better and easier all round, I have 50% of bubble with mother now sort of and 50% with the boyfriend...am not sure that's how its supposed to work but that's my take on it!

I do think that hospitals are using the cv 19 impact as an "excuse" to do what they want to to make life easier for them without any thought of what the patient may want or need, can you request a (masked) face to face meeting?  May be worth a go...

Just noticed your new pic (even before I read about your foray into figuring out how to do it - and well done!) and determined that either Archie has been eating things he shouldn't have (again!) or that's one of your new creations, looks very impressive...and this from someone who has never had an artistic cell in her body...I like!  I used to live near some highland coos and they used to scare the pants off the boyfriend at the time...and that was why the great idiot had to go...

Year re the bisph's its the infusion, am mainly doing it to save my osteopenic bones from the naughty letrozole but also good that it can prevent bone cancer, if I have any bad ongoing side effects will re-think things.  Am planning to feel poo afterwards with flu like side effects and then am actually planning to get my lazy bum back to work...about time too!  Am "lucky" in that my office is old and rammed full of people so will be closed for remainder of this year as no chance of achieving any sort of social distancing so makes my very phased return to work even better so hurrah for that!  Will miss some human interaction with work pals though, and the chances of technology not proving to be a real pain in the missing boob are mimimal!
Suspect that thoughts at my work are very similar to those in your daughters office...time will tell, I don't really mind either way as long as I can pay bills and ensure those cats remain overweight.

Managed this morning to book some National Trust tickets for weekend after next - what an annoying system, the RHS one is far easier...looking forward to getting out & about some more. Am amazed that I wasn't too bad with the daft weather today, I think being nuked recently and having stupid hot flushes has acclimatised me to 30+ degree temps, I do hope I'll be able to get some quality sleep later...

Hope all is fine with you & Caroline (Caroline - don't work too hard, its too hot!!).

Sam X

Hi ladies,

Good to hear from you both!! All good here. I had a 6 month "holistic" follow up call yesterday. When I had the first one, after my radiotherapy I poo pooed it and told them I was fine. This time I really appreciated the call. They had sent me a sheet to fill in, highlighting any thing I was worried/distressed about - practically, family, emotionally, spiritually and physically. Call lasted 30 min and she has recommended that I make use of some of the local charities that offer therapies like reiki, massage, aromatherapy etc. She is also going to contact the breast unit to see if I can go for a physical check up before my next appointment, which isn't until October.  
Life is carrying on as normal - I've got a hair appointment for next Saturday at 9am and I can't wait!! I have my hair really short and usually have it cut every 5 weeks so it's desperately in need of a trim!!

Work is work. Our holiday in August has been cancelled. I wasn't surprised. We were due to go to Florida but their COVID rates are very high at the moment so probably best we wait until next year. Hubby wants us to go away in a camper van - can't say I'm thrilled about that as I hate camping of any kind!! 
I'm interested to see if opening bars etc is going to push the Covid infection rates back up. I for one, won't be going out and visiting them!! Cheaper and nicer in my garden!! 
Anyway, off to see a friend, in her garden so hoping the rain holds off!! 
Take care and stay safe xx

Caroline

Good to hear from you.  Is your holistic call part of the OAFU (open access follow up) program?  People talk about this as if its a nationwide "scheme" we're all in but I'm not convinced until I have collected evidence! So do you get a chat/meeting every 6 months? I guess that makes sense as my first OAFU meeting is 6 months post surgery, hadn't thought about how often they'd be after that though.

Presumably you've had your annual mammogram by now?  Got mine at end July, comes round quickly.

I encourage you to take advantage of the complimentary therapies on offer, during chemo I had all of them via MacMillan and their were all really welcome, I particularly enjoyed the reflexology (love having my feet pampered) and also the reiki (enjoyed it as the woman doing it actually told me to shut up so had a rare opportunity to stop gabbing and relax!).

Crikey, how did you manage to be first in the hairdressers, that is very impressive or your hairdresser has decided you are most in need - either way well done! I'm thinking of going silver as I wouldn't mind my grey if it wasn't so salt & peppery and silver will be beneficial when roots start showing...prior to losing hair was strawberry blond and am bored with that now, want something fierce!  Pity the poor hairdresser with all these curls though...he'll be earning his money..see him the 9th so not far behind you.

So that's at least 2 holidays that I know of that you've missed so far...hope you got refunds for both of them. 

I have 2 holidays planned so far. In July plan A is to visit a pal in Southern Ireland but as there's still 14 day quarantine there if things don't change plan B is a trip to the motherland to see pals & family and then August had planned to go to the Edinburgh fringe, think we'll still do Edinburgh (drive up with stop off in Yorkshire) but no fringe unfortunately, got a lovely apartment booked so should be fun.  Don't think I'll be going "abroad" any time soon, the flying set up doesn't fill me with joy plus if I was a local and heard an English accent I'd avoid me, we've not got a good reputation in terms of the lurgi have we?  Like you say it will be really interesting to see what happens in pubs & restaurants the following week, like you I'll sit on the sidelines till we see how things play out...I do still think a lot of people will be doing gardening entertainment like yourself.

Busy week this week with blood test Tues and zolodex and bisphosphonate gunk Weds, don't think I've been so busy since radiotherapy, how will I fit all my usual fannying around in the week??

Am getting more annoyed that my under arm is still quite sore and is worse when lift arm overhead and am not sure if BCN is fobbing me off telling me that's normal, Christine any thoughts?  Its not stopping me doing anything, am not yet lifting heavy stuff or weights as don't think I should but that's about it.  Never do much hoovering or ironing so deffo not overdoing either of those, in fact one of the doors in my house has that many clothes awaiting ironing on it they now have cat hair on the bottom of them and there's a risk the hinges may fail!

Had a good day out yesterday (and making the most of the boyfriends national Trust membership) at a local arboretum, love a good tree collection!  Not too rainy and not too hot or sunny - ideal, and did't even mind a wet bum post picnic (delish corned beef sarnies with lashing of horseradish...only the quality meats for this northerner)!

On the subject of work have my occ health meeting tomorrow, know what I want so let's see how we get on eh?  Very keen not to work too hard!  Wouldn't class myself as lazy at all but need time to fit all the stuff I want to do into my day and will be putting me first from now on, well that's the plan anyway....

Have a good week

Sam X

Hi Girls,

i was interested to read about the holistic telephone call and the open access follow up programme because I have never been told anything abou them  or about complimentary therapies.  I imagine that the call I am expecting at 8.45 next Wednesday morning must be part of this but it has never been given a name.  

 I had good news last week in the form of a phone call from the lymphoedema nurse to say my laser treatment appointments had been arranged, starting on the 13th of this month - how the heck has it got to July already? - four sessions of 45 minutes each, Mon/Thursday for two weeks. 

Sam, my arm isn't really sore and it certainly doesn't stop me doing anything, although if I do something very strenuous I do get pain in the muscle, I think the pectoral, which tightens right up into my armpit and feels like I'm trying to get into a sleeve that's three sizes too small for me! The tightness is noticeable sometimes more than others.   It is still early days for you, though, and you had more nodes taken than I did so I suppose it's going to take longer to heal properly. It's a good job mine's not too bad, now, because last week my bed collapsed and I had to lift the whole weight of it up with my bad arm so I could push it back together with the other.  Yesterday I built a flat pack kitchen unit, too and it wasn't painful at all. Although I am right handed so did most of the work with the good hand.

I hope you're feeling ok after your bisphosphonates infusion today. Are you ok with the Zolodex? It feels like a long time since I had to keep all those hospital appointments, My mammogram is in September but I forget what date. I'm just assuming everything will be ok. 

I feel quite smug when it comes to hair because I do my own. I have cut my own and my family's hair since the 1970's when a girlfriend who trained with Vidal Sassoon taught me the basics of keeping short hair neatly trimmed.  My kids didn't like me cutting their hair as they got older but both my exes were very happy to save money on going to the barber. When we lived in Jeddah, Saudi Arabia, all the barber shops were closed down for a while as one was caught out, acting as a cover for a brothel, so I had a regular line of my husband's colleagues popping in for a trim.  I should have charged for my services but didn't.  I wear mine very short, too, Caroline, and it does need trimming very often, so I just set up mirrors at various angles in the bathroom and hack away. My premise is that hair grows so if I make a mistake it won't show for long!  I went grey very early, in my twenties, so I coloured it for years and years, going from my natural, dark, brown in my twenties and thirties, to an ash blond in my forties and then at 56, I decided to stop colouring it and it has been pure white for the last 17 years. I have never thought of using a silver colour, Sam, although I've just seen an advert for a silver shampoo!

I actually ventured out to the shops last weekend!  I needed petrol, which was my excuse for going out and the impetus for actually going, was my neighbour offered to get something from Aldi for me but by the time I had listed all the things I wanted I couldn't bring myself to ask anyone to seek all those things out.  I went fairly early on Saturday morning and there were no queues and few shoppers at first, but as I had a real good mooch, buying things I didn't even know I wanted, there were lots of people queuing to get in as I was leaving. 

Take care, stay safe

Christine xxx

Hi Girls,

i was interested to read about the holistic telephone call and the open access follow up programme because I have never been told anything abou them  or about complimentary therapies.  I imagine that the call I am expecting at 8.45 next Wednesday morning must be part of this but it has never been given a name.  

 I had good news last week in the form of a phone call from the lymphoedema nurse to say my laser treatment appointments had been arranged, starting on the 13th of this month - how the heck has it got to July already? - four sessions of 45 minutes each, Mon/Thursday for two weeks. 

Sam, my arm isn't really sore and it certainly doesn't stop me doing anything, although if I do something very strenuous I do get pain in the muscle, I think the pectoral, which tightens right up into my armpit and feels like I'm trying to get into a sleeve that's three sizes too small for me! The tightness is noticeable sometimes more than others.   It is still early days for you, though, and you had more nodes taken than I did so I suppose it's going to take longer to heal properly. It's a good job mine's not too bad, now, because last week my bed collapsed and I had to lift the whole weight of it up with my bad arm so I could push it back together with the other.  Yesterday I built a flat pack kitchen unit, too and it wasn't painful at all. Although I am right handed so did most of the work with the good hand.

I hope you're feeling ok after your bisphosphonates infusion today. Are you ok with the Zolodex? It feels like a long time since I had to keep all those hospital appointments, My mammogram is in September but I forget what date. I'm just assuming everything will be ok. 

I feel quite smug when it comes to hair because I do my own. I have cut my own and my family's hair since the 1970's when a girlfriend who trained with Vidal Sassoon taught me the basics of keeping short hair neatly trimmed.  My kids didn't like me cutting their hair as they got older but both my exes were very happy to save money on going to the barber. When we lived in Jeddah, Saudi Arabia, all the barber shops were closed down for a while as one was caught out, acting as a cover for a brothel, so I had a regular line of my husband's colleagues popping in for a trim.  I should have charged for my services but didn't.  I wear mine very short, too, Caroline, and it does need trimming very often, so I just set up mirrors at various angles in the bathroom and hack away. My premise is that hair grows so if I make a mistake it won't show for long!  I went grey very early, in my twenties, so I coloured it for years and years, going from my natural, dark, brown in my twenties and thirties, to an ash blond in my forties and then at 56, I decided to stop colouring it and it has been pure white for the last 17 years. I have never thought of using a silver colour, Sam, although I've just seen an advert for a silver shampoo!

I actually ventured out to the shops last weekend!  I needed petrol, which was my excuse for going out and the impetus for actually going, was my neighbour offered to get something from Aldi for me but by the time I had listed all the things I wanted I couldn't bring myself to ask anyone to seek all those things out.  I went fairly early on Saturday morning and there were no queues and few shoppers at first, but as I had a real good mooch, buying things I didn't even know I wanted, there were lots of people queuing to get in as I was leaving. 

Take care, stay safe

Christine xxx

Hi ladies!!

A holistic assessment should be part of your recovery programme - www.macmillan.org.uk/.../recovery-package

Christine - I am very impressed with the fact you had to reassemble your bed!! And your hair colour journey sounds just like mine!! Found my first grey hair at 21, dyed it red/auburn/red black throughout my 20's and 30's. I decided to go lighter in my mid 40's as was sick of my badger stripe needing regular attention, so gradually went blonde. I dyed it the other week and it is currently a very white/blonde!! I have attempted to cut it - mostly around my ears but am worried about making too much of a bodge up!! Only 3 days to go!! I did cut my kids hair when they were younger and have been barber for kids and hubby during lock down. 
Just been out for a run but seem to have surcome to a hip/knee pain so ended up having to walk home. I feel like I'm a barrel of aches and pains at the moment!! 
I don't have my 1st annual mammogram until October so quite a wait!  I am hoping, after my assessment, they try and fit me in a bit earlier, especially as I was actually diagnosed in July/op in August.  Not sure if I have any more holistic assessments - but she did give me her contact details and said I can contact her whenever I wanted.

Right, off to dump my trainers and get my pjs on. 
xx

Hello ladies
All good here and am now pretty much recovered after naughty bisphosphonate gubbins floored me this week.  Strangely enough though, and it has come at the same time as a change in letrozole brand, my aches & pains now seem to be significantly better...am not sure there's generally good side effects of any drug so will just put myself down as being a medical miracle.
I did have a lovely time though at the chemo unit on Weds, and though the zolodex & bisph's only take 30 mins was there for 90 mins as was having so much fun with (poor) fellow patients and the very funny nurses.  I think that all involved are more than happy that they only get to see me once a month! And I don't think I get any side effects from Zolodex Christine but they could get mixed up with letrozole side effects as been taking them for broadly same time.
So its sooper Saturday, I bet Christine was out at 8am at her local Wetherspoon's eh? Ha!  Mind you with your furniture building ability a job helping out Ikea buyers beckons (agree with Caroline very impressive).  I live opposite a quiet boozer (its a well behaved one) and its very quiet though the locals are very good at making believe that 100cms is the same as 100mm ...I won't be popping out to pubs/restaurants any time soon and will be still insisting that the cats place their food orders via post-it note.  I don't know anyone who is planning or who has actually braved the newly open leisure sector today, do you?  Am sure many, like me, are waiting to see what ensues...
So am going to be fighting fit tomorrow (I've decided so it will be so) and go, just for a change, for a bike ride.  And then next week is full on busy, 2 trips to the hairdressers (yep its that bad!  Actually one is a patch test) and 2 meet ups with pals.  Back to work 14th for a few days before a holiday oop north back to the Motherland...hard life for me eh?

Like Caroline I was grey from early 20s ( it could have been worse, my father & brother were bald from late teens!) but I've never, until now, "embraced" my natural hair colour, its been an experience...but one that will be finished next week! 

Glad your laser treatment is but a week and a bit away Christine, reading about it it would appear to be quite straight forward, hope so & obviously hope it works, presumably you'll only know a while after when the build up starts breaking down?  Do let us know how you get on.  Re my arm/pit soreness, probably not a coincidence but not having done ANYTHING for the past few days had resulted in a much improved area...which although I have quite clearly noted there is no stopping my exercise so will just have to stop moaning as its most likely all self induced!  Although I exercise I would not lift a bed though!! Christine-does your daughter know? Mmm?

Christine you do have an interesting past and more than one string to your bow, I was never meant to be anything more than a one trick (and simple ones at that) pony.  Think your hair is like my mothers (the one near Caroline), her's would be pure white if it wasn't tinged with nicotine (nice!).

Caroline - give the mammo dept a ring as seems so odd (and I know there's discrepancies all over re consistency of BC treatments) that we were both diagnosed same time yet you wait.  The worst that can happen is there's a good reason (can't imagine what but you never know) why its later than mine and they can hopefully tell you why.  Impressed with the running, especially late(ish) in the evening, if i don't do exercise by 5pm at the latest it doesn't happen..any impetus I had has departed for the day.

Right time I had my first shower in 3 days (nice!), boyfriend is popping by to check am still in land of living (and to do 3 days washing up...he isn't aware of the latter yet!).

Hope your weeks are as thrilling as mine promises to be!

Sam X

Hi ladies,

Hope you are both well and enjoying a bit more freedom. Wanted to fill you in on my updates. So, following my "holistic" 6 month assessment, the lovely lady reported back to the breast team about my worries that no one had given me a physical check up. I then received a phone call to say I had an appointment on the 9th July, to see the Advanced Nurse Specialist, for a check up!! I was there for around 30min. Long chat about the side effects of the tamoxifen, tiredness etc. She did suggest some medication that could help with the night sweats but I wasn't keen - one is an anti depressant and one is a blood pressure tablet. Said I'd rather manage for the time being.  Then had a physical check up!! All fine. She did say my scar feels quite tight and to keep it moisturised. I think it has helped my worried thoughts but to be honest - there was no feel able lump the first time!! She also booked me in for a blood test, just to check that there isn't any underlying reason why I'm so tired. I'm convinced it's the tamoxifen so I've made the decision to give it a break for a month, to see if my aches and pains/cramps/night sweats and tiredness improve. I've just completed week one of no meds and for the past 2 nights have slept better than I've slept in months!! Hopefully this will then help with the tiredness. I am planning on going back on it in September but might reassess if I feel I've got my life back!!!

Anyway, how you 2 both doing? Any check ups coming up? How you both doing physically and mentally? Good I hope! My hubby has just bought a motor home and we are off to do a week of touring in a few weeks!! Not my idea of a holiday but better than staying at home!!!

caroline xx

Hiya Girls!

Sam, you make me laugh every time I read your messages. I must say I'm glad I refused to have the bisphosphonates if it floored you who takes everything in her stride! I'm glad you seem back on top form.  I have seen a few reports of how changing the brand of Letrozole has helped with the aches and pains. So far I'm coping ok, I get a strange new pain in my back, these days, that I suspect is from the Letrozole. I had a bad back for years but it was always left or right of the spine at pelvis level, caused by loose sacroiliac joints, but I have learned how to be very protective of it and it rarely bothers me now. The new pain feels to be right on my spine at waist level, I get it in the morning but it eases off as the day goes on. Apart from that and feeling very tired some days  I'm doing ok with it I think. 
 

Caroline, I'm so glad you actually got to see someone in person who could examine you. I had my belated 6 monther by telephone again. I was quite boosted by your description of your telephone one and did tell the nurse who called me everything that had been going on, only to be told, "That's quite normal" or " Well, it's early days". I told her I thought it would be comforting if I had been told that after being examined by a person who knew what was what. She then said that wasn't everyone's experience, some people found examinations stressful and in any case, from the sound of things she would have discharged me to the "risk stratified pathway" anyway!  I had to google that later as there was no explanation forthcoming. I told her about baby boob and got the early days platitude again and when I said I was going for the laser treatment she said "Well, you can give that a try, I suppose!  My mammogram is going to be done some time in September ( if I'm lucky ). I just said thank you and hung up feeling very dejected. Thank goodness for my lymphoedema nurses!  I have been given a couple of new ways to massage/ manipulate the hard tissue to move the fluid on, the laser was painless, I hardly noticed it because we were chatting - about my disastrous foray into normal life, which I will relay to both of you, with the understanding that you can stop reading any time when you get bored,

it was the Fourth of July, freedom for the masses day. I had no plans to take advantage. - no Wetherspoons at 8am or any other time, but I did have to go out earlyish in the morning to pick up some flea treatment for Archie, from the vet. This would be only my second outing since lockdown began so I planned it carefully. I would take a route that allowed me to pop into Aldi and Iceland before carrying on to the vet's. it was a horrible grey morning with very poor visibility but I went anyway. I did a one sector hop on the motorway and did my shopping. I had a good mooch at both shops as they were next to each other. Stocked up on lots of store cupboard essentials and went back to the car. Funny! I couldn't open the doors. I tried a few times then remembered I had a key inside the fob so I could use that to get in. But then I couldn't start the engine. I had only left my lights on and, because it hadn't been driven properly for three months, the battery had died. Aaaagh!  I had recently called the RAC to cancel my membership but, fortunately I was still covered up to July 11th. I phoned my daughter to tell her my tale of woe and she said to ring them and if they were going to be a long time, to call her back and she would dig out some jump leads and come to my rescue. I did call them and they said it could be four or five hours before they could get to me because I was safe on the car park. I was just going to call my daughter back when I remembered I still had Iceland's basket in my hand so I went to put it back - as I did so I caught the eye of a man a few cars down, packing his shopping away and being the kind of person who speaks to everyone I said, "Battery's dead, can't start the car!" and rolled my eyes signalling that I knew I'd been stupid. He immediately said, "I've got jump leads," Five minutes later my engine was purring away. Now I knew the battery would need further charging so instead of going straight to the vet's, I did a ten mile circuit via  the motorway and repeated my original journey but continuing to the vets. All well, life goes on.   Until Tuesday, 14th July, ten days of basic near normality, then the postman came and I got a notification of intent to prosecute me FOR SPEEDING!!! on 4th July AAAAARRRRGH. I couldn't believe it, I had been caught by a mobile camera, hidden under the motorway bridge on my first trip. The real irony of this was that it was only my second speeding ticket ever (in Uk) and the first one was in exactly the same place twenty years before!!!

The only good thing is that I qualify for the speed awareness course as I was caught doing 36 mph, so I won't get points. My kids laughed their heads off!!! My daughter said they will be doing a lot of mobile speed traps now to make up for the months with no revenue because no one was on the roads and, funnily enough, since then I have seen police vehicles tucked away in several places along the road where I've never seen them before.

i posted my Mea culpa form back yesterday, hoping it will all be sorted before my insurance renewal

I am waiting for the third thing to happen now, as my mother always swore these things happened in threes.

Then, yesterday,  I got my copy of the doctor's letter from the nurse making it sound as though I was completely happy with everything, as I said earlier, I think, thank goodness for my lymphoedema nurses. I have two more sessions with them, next week then the mammogram in September, no date for that, yet. 
 

I hope you are both still awake. Caroline, is there no other tablet you could take instead of Tamoxifen- I don't blame u for feeling you don't want to start it again, especially if you are feeling better without it.  I will have no qualms about stopping the Letrozole if I feel it making me ill.

Sam, I hope your week was as thrilling as expected, bet it wasn't as exciting as mine or should I say exasperating!

Take care, it's always nice to hear from you both,

Christine xx

Oh Christine!!!

What a nightmare!!!:laugh: At the point where you couldn't get in your car, I was waiting for you to say you then realised it wasn't your car!!! Thank god for kind people, although I don't have any jump leads in my car, so wouldn't have been of no help!! 
Ive only had one speeding fine - which my hubby checked up on this week and it has now been removed as over 5 years ago. I was going too fast to qualify

for the course so points and a fine :cry:

I have to say, your breast cancer nurse didn't sound the most supportive or empathetic!!! I am very grateful for the lovely team I am under. 
In reference to alternative medication - I suppose they would need to assess what stage of the menopause I would be. If I am post menopause, medication could change but I have a merina coil so that has stopped my periods anyway. But so far, sleeping better and less night sweats!! Might go back to my medication once the weather turns colder - easier to cope with then I reckon!!

I'm sure your 3rd unlucky strike is not going to happen but just watch out for dogs and hearing aids!!! Just saying!! :silly:
Caroline xx

Hi Caroline,

Writing stuff down on here and getting a sympathetic reply makes life's little problems shrink to the size they deserve. Thank you. 
I forgot to say, last time, that my best friend and her husband have a motor home, which I always seem to call a camper van, and they have had some wonderful trips in it, both in UK and Europe. Because of the situation at the moment they are planning a trip for the next two or three weeks discovering the Eastern part of England, going from here in Lancashire down through the Peak District then over to the East coast. She has booked their camp sites and because they are fully self contained, if necessary, it doesn't matter if not all the facilities are open. She says they love stopping over somewhere they don't know and getting their (electric) bikes out and exploring.  I hope you enjoy yours as much!

Christine xx

Hi both,
Just catching up on comms as have just been on my jollies...a week back in the motherland...ooo it was soooper great.  Haven't been up there since November, far too long ago.  Saw all my northern pals & parents - not bad for a week, absolutely knackering but well worth it.  Did some National trust gardens, ate lots (did I tell you my middle name was glutton?), walked 15 miles on one day (I was more tired than my pals little dog) at Bridlington (fish & chips helped restore energy levels).  Just what I needed.
We did have an interesting "scare" that the pal I was with on day 2 got tested as she was going to visit elderly relatives and tested positive! Don't care about having it but do care if it puts paid to my plans of the rest of my Yorkshire holiday...anyway got tested with the pal I was with (as did a few others that she'd been in touch with) and everyone else is negative (so glad).  Odd that she's the only positive out of 10 tested and she only had a headache as a possible symptom, but its not like you can question the result.
Anyway if you fancy an interesting experience get yourself tested!  Very odd but a bit like having the chemo to round off my cancer experience and glad I'm getting more of the CV experience, I'll stop short of a hospital visit though thank you.
And am loving the CV impacted M25 & M1, best journeys I've had up north for over 15 years! I think the M62 was actually worse than the M25...bonkers.  So got back down south last night...boo!  Cats enjoyed their "spa" visit while I enjoyed not bad weather up north (not too much of the wet stuff amazingly).

Caroline
Really glad you got your concerns listened to...its doesn't happen enough from messages I've seen from many others, not at all good for physical & mental health, especially with all the other nonsense that's going on.
I do wonder at what point (and its a question for my 1st follow up mid Sept) they test to determine you're post menopausal as I'm sure I won't be getting the ovary killing monthly zolodex injection thingys forever....will see what they say.
I'm with you re the hormone tablets, am lucky that the current brand gives very few side effects but if it did, and despite the 15% improvement in survival rates over 15 yrs, I'd ditch them no problem...quality of life tip top priority for me.  And not being able to sleep would only just beat (in terms of the worst things that could happen to me physically) problems with feet....I do think that interrupted  sleep is a justifiable defence for murder (if you had noisy neighbours for example) so get your pain re not being able to get a good nights kip, glad its got better and hope it improves even more.
Ooo a motor home, I suspect that wasn't as cheap as it would have been had we not got this bl00dy lurgi eh?  My father used to have one and used to clear off (by himself - my family are such a sociable bunch) to Morocco, Norway and many other places, far better than a caravan in my opinion and you'll be getting out & about.  Where are you planning to go?  I heartily recommend Northumberland, bit of a trek from you but soooo beautiful, with obviously a stop off in Yorkshire (goes without saying).  The 2nd mother (my father is working in no. 3 currently!) has a campervan with boyfriend but did have a holiday in Anglesey cancelled as the toilet block couldn't cope with social distancing - odd but be warned.

Christine
Hiyaaaa right back at ya!  Yeah, my letrozole pains were predominately morning based, I guess its as bodies haven't been used overnight?
Good lord a "risk stratified pathway" sounds very Orwellian...nice!  Think I'll be taking another path if its all the same with the NHS....bridlepath most suits.
I presume that its a breast cancer nurse doing these 6 monthly follow up calls?  It just doesn't sound like they have any power or authority to make any decisions or take any decisive action...lots of platitudes not at all helpful...and actually have a negative impact.
Had to laugh at the "understanding that you'll stop reading where you get bored" part...never! The only thing I've ever stopped reading was Jane Austen's Persuasion, persevered to page 24 before admitting defeat...the classics just don't have enough serial killers in for my liking, will stick with more modern rubbish for my reading material.
Fancy leaving the car lights on!  Had a boyfriend that did that on the last leg of European car trip in Amsterdam, good excuse to stay on and sample more delights of that fair city.
My mother has an electric car and as it was sat in the drive doing nowt during lockdown got drained...and as there was no power she couldn't get in it!  The AA man showed that there was a way round this involving a special handshake and some incantations so she's good next time.
So its speedy Christine now eh?  You renegade.  And no doubt you'll be doing your speed awareness course by zoom or whatever ( I know lots of speeders!) which is daft, if you don't do video (not sure whether they can "make" you do this) how do they know you're actually there?  Archie could do it for you...Like Caroline when I last got done for speeding (bl00dy M25) I did it in style and was too fast for the awareness course (typical!).

So has the laser/massage helped your lymphodema?  And is your knee now turbo charged?  Hope both are behaving....

So hair is looking sooo much better, rather than being salt & pepper grey its now sort of silvery/ash grey, I no longer resemble my (years since dead) 95 yr old grandmother.  I have a £5 bet with my hairdresser who think the chemo curls are permanent (I give them 18 months), it was very funny as we were chatting about what had changed re chemo and he commented that my boobs were bigger - had to tell him a) there's only the one and b) was wearing a bigger/sturdier bra as comfy!  He is now focussed on what they'll look like post reconstruction!!  We luckily do have a good relationship. 
My first week back at work ( back 1 week then on my holiday!) was ok but knackering and am only doing 4 days/3 hours a day, am taking it VERY easy...and still finding time to get out on the bike and do my 3 times a day arm exercises (had a week off last week).
Next week quite busy as have monthly zolodex thingy and first mammogram (in the gynae unit which seems odd)...so very exciting!
Its funny that all my pals are really surprised at how well I look, people do expect cancer sufferers to be wizened, emaciated and generally ill looking I think...even if they're free of the demon!  My father (who saw me in Nov during chemo) still thinks I'm a fake..ha! Mind you I am a million times healthier than I was in July 2019 when diagnosed, eating healthily & doing exercise has done me well...and shifted 5 stone! I have however over the course of my life lost more than my body weight, am a real Oprah type in that respect....did I mention I am naturally a glutton?
So after my hectic week I have a sore throat, the (hypochondriac) boyfriend is convinced I have CV so a very quiet weekend will ensue ...and he gets to do my shopping chores...great!

Glad you're both well and long may it last!

X

Hi Sam,

so lovely to hear all the stuff you have been up to!! Firstly, well done on getting back into work. Glad it's all going well and you are doing it slowly. 
Sounds like your trip up norf was eventful but fun!! I had to do a CV test a few weeks ago, as was asked by the Covid app, if I would do one, as a volunteer. I opted to do it myself - really not a pleasant experience! Hopefully it was a true negative and you aren't coming down with the lurgy. 
Our motor home is now all kitted out and hubby is raring to take it on a test run, so we have managed to get booked into a camp site in the cotswolds, next weekend, for a couple of nights. Luckily it has a shower and toilet so shouldn't be a problem if shower blocks are closed. No plans yet about taking it up to the lovely North, but I'm sure we will go up there in time.

I can't believe you have lost 5 stone!! What an amazing achievement!! Well done!! I've got a couple of sessions booked in at the gym next week!! Feeling quite excited!! 

Still not taking my meds and my sleep is soooo much better!!! Still got a few aches and pains and do still feel tired but not as exhausted. I know I need to start back on it but for the moment I'm enjoying some normality.

Well, off to get on with my Sunday duties. Take care ladies xx

Hi Sam,

I was just thinking it had been a while since we had heard from you, then I remembered you were going on holiday, then lo and behold you were back!

I'm glad you had a good time and the weather was kind to you. I wish I could say the same for this side of the Pennines, we seem to get every bit of rain coming in from the West. When they do the visuals during the weather forecast on BBC1 there always seems to be a blue blot over my part of the world. We get the odd beautiful day that keeps us from suicidal thoughts, but then you have to rush to get in all the gardening that needs doing before the rain starts again. I am very much a fair weather gardener.  It is outdoor housework to me, keeping what's there tidy, no interest in planting more stuff to grow wild!

I would just like to explain that the morning when I left my lights on was a very grey drizzly day with poor visibility, hence lights on and missing the police car under the motorway bridge aiming its speed camera at me.  However, it was only my second foray into the world post lockdown, so, being a very obedient and probably vulnerable to Covid person I was wearing a face covering to go into the shops. Said face covering was attached by elastic round my ears.  I am telling you now, for future reference, that glasses and hearing aids plus elastic round the ears is not an easy wear, as I'm not well endowed in that area. I decided, as I needed the glasses to see to drive, to leave the hearing aids at home, so....when I turned off my engine, I didn't hear the beep to remind me to turn off the lights, and as it was daylight, well, supposed to be, I didn't see the beam from them hitting anything within my vision.  That's my defence, your 'onour! 

I think the phrase "open access follow up" is probably just a more friendly sounding title for the "risk stratified pathway" they are selling up here. They are brutal Northerners up here, after all. It was a breast cancer nurse, and, as you so rightly put it, all she could offer were platitudes. My laser treatment has finished now. I have an appointment for three months time, which will be after my next mammogram.  It does feel to have softened the ridge above my scar which was quite hard. The baby boob seems to have changed shape a little, too, less protruding. Of course I now have yet another exercise to do in the morning before I can start my day. I know none of them are aerobic, but they do bring me out in a sweat so I can't even get a shower until they are all done.  The knee exercises are keeping me mobile, thank goodness. I am starting to get twinges of pain in both the knees, occasionally, as the injections wear off, but nothing like before and I've started taking a pain killer as I go to bed so I haven't been awakened with the pain recently. In fact when I went for a walk with my daughter and the dogs the other day she told me to stop racing, so I must be back to walking normally, as I've always been told to slow down when walking with other people - I blame my long legs!

I think you will be keeping your curls, everyone I know whose regrowth came back curly has kept them. Strangely enough, my sister's came back straight, but was a result of having her head shaved for her brain tumour surgery, rather than the chemo which didn't cause her to lose any hair. Your relationship with your hairdresser sounds as though he fancies you or he's gay. I suspect the latter in view of his career but I may be wrong and he's *** after you and your new silhouette!
In view of the latest government guide lines on COVID-19 your losing 5 stone will guarantee that even if you get it, you will only have a mild version.  My half stone that I lost when I first started taking the Letrozole came back with my appetite after a few weeks, and has stayed and possibly increased, since then. I have decided that as a crumbly who's already had cancer my quality of life demands being able to eat what I want and as I'm still wearing the same size clothes for the last ten years I am quite happy the way I am. I spent several decades fighting the weight battle, but no more! What's a couple of stones overweight anyway? 

Have a good week, Zolodex etc., permitting xxx

Dear All

Christine picked me up and saved my despair from a post that just said "scared of everything"

Grade 2, stage 2b ILC with one Axilla LN. ER8 PR8 Her2 neg. I'm 53, a bit overweight but a motorbike riding, scuba diving,sax playing midwifery sister so am in ok health mostly.

just started zoladex (hubby gave the injection on friday) and tamoxifen. I'm scared of the side effects but am going to get out and do some exercise and start living a bit. Live in Cornwall and boy is it full down here ATM.

I have one massive boob and one that I think belongs to a 20 year old. Apparently she will fix the other one next year. Covid permitting.

so, so good to read your chats and realise that there is hope.

Jen