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 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

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