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

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 

Hi Jen,

Lovely to hear from you. These 2 lovely ladies kept me sane during my cancer journey, last summer. We all have Northern roots, a sense of humour and each other, and that has proven to be invaluable. So Hello from our little family. I also had lobular bc, stage 2, grade 2. Wide exertion with a flap from my underarm/back used for reconstruction. Oestrogen and progesterone 8/8. No chemo but had 15 sessions of RT and tamoxifen. Good to hear you are "surviving". I'm off down to Cornwall in a couple of weeks!!

Caroline x
 

Hi Jen

Ah the wise words of Christine - as you can read that's not my forte...

Your diagnosis not a million miles away from mine though I'm team letrozole.

Used to have a motorbike, loved it but kept forgetting to steer so had a few close shaves with cars! In the end swapped it for a rug...far safer with me on it. Also have memories of losing balance at petrol station and being pinned under it and feeling like an upturned tortoise, surprisingly it took quite a while & few words before anyone came to my rescue.

I have my next zolodex weds, you're the first I've come across who is (sort of) self administering, I actually enjoy the trip out to the hospital to have the lovely nurses stab me...am usually there for quite a while having a good chin wag.

It took cancer to get me exercising (again, we're like old pals that sometimes go for a while without acknowledging one another!) and am loving it - cycling is my speciality, I'm a right dawdler, love interrogating people (especially those with binoculars), talking to dogs and saving the wildlife (caterpillars and stag Beatles my speciality)...so a 10 mile bike ride can actually take most of the day!  But being osteopenic and having the letrozole try & destroy my bones try and get out walking too.

Intrigued as to how you gained a 20 yr olds boob....ha!

Welcome!

Sam

Hi Jen

Ah the wise words of Christine - as you can read that's not my forte...

Your diagnosis not a million miles away from mine though I'm team letrozole.

Used to have a motorbike, loved it but kept forgetting to steer so had a few close shaves with cars! In the end swapped it for a rug...far safer with me on it. Also have memories of losing balance at petrol station and being pinned under it and feeling like an upturned tortoise, surprisingly it took quite a while & few words before anyone came to my rescue.

I have my next zolodex weds, you're the first I've come across who is (sort of) self administering, I actually enjoy the trip out to the hospital to have the lovely nurses stab me...am usually there for quite a while having a good chin wag.

It took cancer to get me exercising (again, we're like old pals that sometimes go for a while without acknowledging one another!) and am loving it - cycling is my speciality, I'm a right dawdler, love interrogating people (especially those with binoculars), talking to dogs and saving the wildlife (caterpillars and stag Beatles my speciality)...so a 10 mile bike ride can actually take most of the day!  But being osteopenic and having the letrozole try & destroy my bones try and get out walking too.

Intrigued as to how you gained a 20 yr olds boob....ha!

Welcome!

Sam