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,

Well it looks like you are one of the family now. The rules are you use us to sound off when you're feeling scared/angry/fed up and you tell us how you are getting on. In return we will continue to keep each other going. If you plough through this thread you will find out how similar yet different your own experiences will be and, hopefully, it will make your journey a bit easier. Sam has had a harder time of it than Caroline or me, and I've had it easiest of all, but you will never hear a word of self pity from either of them. You might from me, I'm claiming old age as my excuse for acting like a two year old sometimes and sounding off. Bl**dy speeding tickets Grrr!
You are the same age as my daughter and my cancer has been harder for her than for me. I think it gets easier to deal with life's nastier surprises as you get older, except for speeding tickets, that is. 
I forgot to say, the other rule is you can just pop in as you wish. There is no rule demanding continuous communication, we will enjoy hearing from you whenever.

Christine xxx

Hi Sam and Christine, 

Lovely to hear from you! Am currently in not sunny Cornwall, on our motorhome holiday road trip!! Left hot and sunny Hampshire on Friday last week. Spent 2 nights in Wareham and the day in Swanage. Then drove to Brean Sands. Another lovely and hot site. Came to Portreath on Tuesday to mist and fog. Yesterday was a miserable foggy day so was very jealous of all my friends telling me how hot and sunny it was at home! Sunshining today but only weakly. Tomorrow we head off to West Bay for the last 2 nights so hoping for an improvement!! 
My oldest son came back home in June - following an incident with girl friends neighbours involving a bit of road rage. He was very frightened and was happy for his dad to pick him up so that does seem to have resolved but he has soon slipped back into arrogant ways. 
Appointment wise - very quiet! Next appointment on the 7th Oct. it's to see the consultant so not sure if the mammogram will be the same day or before then.

Hope you are both managing ok with the heat - come to Cornwall - a lot cooler! Xx

Hi girls,

I would be sorry for you having miserable weather in Cornwall , Caroline, if I wasn't melting in front of a fan waiting for the heat to break.  Poor Archie can't understand why I won't take him for a walk, doesn't realise his feet would burn! 
Sam, I've just checked the weather "darn sarf" and it says thunder and lightening
 so I'll stop complaining about the heat. My daughter has air con in her house as well as her car. I just have it in the car. If it gets unbearable I can pop round to hers.

Re. the laser treatment, I had four sessions and go back in a few weeks for follow up. The seroma has flattened somewhat, but there are still thick areas of scar tissue that are tethered to the chest wall and we are trying to get them to move so the fluid will have somewhere to go.  Don't get your hopes up about the ultrasound guided seroma draining, all my doctor got was blood, despite being guided.  
I'm envious of you being in Edinburgh, my favourite city in the world and I usually get up there for the fringe. Glasgow is having quite a high Covid count at the moment so I don't think I would be visiting.  Every borough surrounding us has been going into further lockdown measures because of the Covid count but we seem to have quite a low count, for now.  I suspect it will change in the future, the virus seems to be running rings round the scientists. 
Is your arm still so bad that you can't carry things?  Mine still feels like it has a tight strap around the shoulder and underarm but it isn't painful and I have had full movement from the start.  I wouldn't be able to keep up with the hair cutting otherwise, there is a lot of stretching and twisting involved in that, I hold the hair in my left hand and my scissors in the other. It's at a very short but not scalped looking length at the moment, as I went to town on it a couple of weeks ago. As soon as I look in the mirror again and think it looks nice it will scream "Cut me" again.

I am supposed to have a mammogram in September but haven't been given a date yet, so it could end up not happening, so my only appointment is the 17th at the lymphoedema clinic, but who knows what will be happening so far away. If the kids going back to school doesn't cause a huge spike it should be fine. 
I hope the weather settles for the rest of your holiday, Caroline. From the happy position of having children older than yours, or even older than you, I can say hang in there. The older they get the more human they become!  Then when you are a grandma you can get your own back and spoil their kids rotten and leave the parenting to them. I was waiting for that for thirty years, but alas, we went from me being their parent to them becoming mine! Ah well!  
I had a lovely day two weeks ago when my son paid a flying visit. I hadn't seen him since January, and after spending so much time together in the few months before then I was really missing him.  My daughter came to the pub with us and we had a lovely catch up and a meal I didn't have to cook, myself, in the beer garden. It felt so normal, it was lovely!  
The next day, I broke my glasses, got an appointment to get them mended at the opticians, then fell flat on my face in the car park in my hurry to keep it. Cost me £40 to fix the specs and am still sore from the bruised ribs. C'est la vie!  Payback's a female dog!!! I haven't been out since!!
Tomorrow I am taking my speed awareness course via Zoom. I hate Zoom, so I hope it works ok. It cost less than the fine and no points so it's worth doing. 
Take care, 

Christine xxx

Hi ladies

Having a very exciting week here.  It started with a voicemail asking me to call re a 9am appointment on Tues...that I knew nothing about and when I tried phone number left didn't work!  Spent quite a while honing my sleuth abilities and after about 10 calls finally gathered it was re the trial that I'm supposed to be part of (tenacity one of my key strengths, that and eating) that I had been chasing onc about.  Great I thought, I'm on the trial, onc had told me they'd sped up recruitment re CV19 but obviously felt guilty that I'd slipped through the net.  Then 30 mins later got a call from onc that I'm excluded as have crohns so there's a risk I won't digest the tablet they are trialling!!!  So near yet so far...ah well.

I have now passed the cancer crown to my father who found out he's got a tumour on his kidney which has spread to adrenal gland, he's fine about it as am I - we're both stoical northerners! He had his op on Tues, there was a risk he could have a stroke (he's had a few) during it but all went well.  So have been having fun with the whatsapp group of him, my sister, his partner keeping all entertained (another key strength...not many agree).  He's having a blood transfusion today as a bit weak but did manage a stagger out of bed.  I have been trying to speak to him (as he's obviously not allowed any visitors in these annoying times) but he's been ignoring me so had to resort to calling the ward and asking the lovely sister who answered the phone to threaten him with removal of other kidney...worked a treat, actually talking to me may be why he needs the transfusion??!!  Not sure yet when he'll be let out and if he'll need quarantining as immune system compromised but will be seeing him when I can (another trip up north...happy days).

Had initial consultation for DIEP reconstruction Thurs and thinking so far is that it can be done early Dec...so happy...mainly that am going it won't be impacted by any CV19 winter phase 2 as relatively early winter (tho' am still crossing fingers on that one).  I am sooo lucky to have private insurance through work.  So will be going full time at work shortly and then off again for this op in a few months! It takes a lot of time and energy this cancer lark doesn't it?

And finally had seroma looked at, following surgeons inability to aspirate had an ultrasound and turns out its just a load of bl00dy lard!  It's know as a 'lateral dog ear' - nice eh? Always wanted a dog but just part under my arm is not what I had in mind.  It will be sorted during reconstruction.  Have noticed that arm is less annoying as time goes by and exercise really helps, have even started lifting (very light) weights at the gym...get me!

Oh yeah and finally got results of annual mammo...had to chase with OAFU, left them a voicemail after 3 wks and no response so assumed all was well.  When chasing trial appointment spoke to BCN and asked her about mammo results, she told me that OAFU had passed the query to them and they hadn't got around to calling me! Again impressive.  So I only found out officially all clear three and half weeks after mammo...lucky to be someone who doesn't worry about such things and feel for those who aren't like me.

Otherwise all good, been getting out & about (and lost) on the bike, visit the gym too, in fact all I seem to do is work, eat, sleep & exercise...could be a worse mix I guess.

Its my birthday celebrations this weekend so am having a yummy curry cooked by the boyfriend Sat night & off out to this really interesting open air museum near me Sunday (Weald and downs museum - have a look, its amazing!) complete with picnic then round for BBQ at pals Sunday night...so a weekend of gluttony..yay!

Just going to finish by telling you that yesterday evening on way back from gym (cycling) I was the wettest I have ever been in my life...my socks contained not only prune-like feet but also a couple of puddles and the cycle path is at the side of a road so whenever a car went past I was engulfed by waves of surface water.  Now I like rain but when you can't see where you're going as there's too much water in your eyes it gets 'interesting'.  Things are still drying out and could take a while...what fun!!!

Caroline - glad you had a good holiday in Cornwall, love a road trip (not sure if other road users agree).  And good that your son has realised where his bread is buttered!  I always recall post uni assuming I was going to move back home and my mother making quite clear that was not an option!  Thanks Mum...ended up living in a back-to-back (with outside toilet blocks still in situ) terrace in Armley, near the famous Leeds jail, no central heating, 'interesting' neighbours...it was the making of me..

Christine -did the laser treatment work then?  Do hope so. My ultrasound showed that the many lumps & bumps I now have near armpit are also scar tissue ( I have no idea what's going on down there so generally just ignore it...always a good policy!) I am still avoiding lifting heavy things like bags of compost but otherwise its as normal so think we're ok arm-wise, plastic surgeon tells me that DIEP will improve arm pain and reduce risk of lymphodema (he did explain why but it passed me by) which is another plus point. 

Have you got appointment for mammo yet?  Hope you've managed to get out and have fun a few more times despite your face planting the pavement (!!) and good you're seeing wider family too.  I tried to arrange lunch date with my mother who told me that August was out due to the cricket...nice to know where I stand in terms of priorities (1. Cats, 2. cricket, 3. Children?).  Are you now chokka full of knowledge from the Highway Code? Did you pass and are now not a menace to society behind the wheel?  I do actually hear ( as I know quite a few speedster rogues) that they are quite interesting and informative so hopefully the same for you.

Hope all is super good with both of you and you're having nearly as much fun as me!

Sam X
 

Firstly - Happy Birthday Sam!! Glad to hear you have got celebrations planned!!! Hope you get thoroughly spoilt!

Good to hear that your op is in the diary!  And that you are doing well.

Its my 50th in October but have had to cancel/postpone lots of things we had planned. Gutted but can't be helped. 

I got my mammogram appointment through for the 18th September. Then have to wait until the 7th October for my appointment with the consultant, where I expect she will give me the results of the mammogram. I'm not overly worried as feel it's unlikely to have come back in that short amount of time. 
My news is that we are getting a puppy!! We are getting a little grey cockapoo in September, who we have called Eddie!! I have to say I know it's going to be hard work but looking forward to the challenge! 
Sam, I have to say my mum told me the same as you!! When I left uni, I was allowed home for no longer than 2 weeks, for a visit but it was made clear I wasn't welcome to move back home!! 
I have everything crossed that all goes well with your dad. Xxx