I love your posts implausible! Congrats on becoming a grandmother ( lol.sounds so old for a funky chic like you) oskar is a super name too xx
I've had a super busy couple of days (so much for my relaxing, recuperative fortnight off work!) but no big plans for this morning so I'm taking the opportunity to have a bit of a lie in and catch up with my gals.
Big news first.... I'm kind of sort of almost a grandma!!!! My other half has a son who is technically not his biological son but he raised him from the age of 2 so Kieran sees him as dad. And he had a baby yesterday! Well, his girlfriend did
All a bit unexpectedly quick as she wasn't due for another few weeks but she couldn't feel the baby moving and was understandably worried, went in for a check up yesterday morning, and there was a problem so they gave mum a general anaesthetic and gave her an emergency c-section.
Happy to report all well and good now, baby is doing well, he is moving out of the special care baby unit today and hopefully they will all be home soon.
They brought baby through to meet dad when mum was still out cold, and Kieran was adamant that he mustn't find out the gender of the baby before his girlfriend did, so the nurses swaddled the baby tight and he had to promise not to peek He was so convinced they were having a girl that in that first cuddle he assumed he was hugging his daughter
I get to see him at the weekend, in the meantime, meet Oskar :
Now catch up time, so much has been happening in here!
Rosina.... that Wandering Wild weekend looks great. I do admire your willingness to camp! I'd do the walking bit (once my legs have recovered) but I would want to be airlifted each night to a nice hotel with a comfy bed and good shower I used to camp a lot as a youngster, at festivals and for short holidays, but I have become more of a creature of comfort in my old age.
My middle son used to be really into the old wild hiking stuff, camping for ages in the more deserted terrain like Dartmoor and Northumberland. He used to occasionally catch a rabbit to eat and get all his water from streams. All very Bear Grylls. Although he did also partially live off Mars bars, he would always pack a ton of them I always worried about him out in the wild on his own but he always survived somehow.
He still enjoys a good rambling trip with his girlfriend but I don't think she is quite so into the survivalist stuff...
As for your trip to Norwich after rads, surely if it is *your* celebration trip, for once this doesn't get to be up for debate, you should be able to choose what you do and where you stay? Tell your man to pipe down!!! (And this is perhaps why I've never managed the marriage thing )
I booked my own celebration trip this week (I'm heading over to New York for a week in October just before my op), and not only am I going on my own and leaving my fella at home, but I'm going to miss his 50th birthday as I'll be flying home that day and not landing till the next morning because of the time difference. I really am the worst girlfriend in existence!! Although he assures me he doesn't mind, and he was the one who was most encouraging me to go.
(Maybe he has a side chick lined up to celebrate his birthday with so he needed me out of the way )
Nettie your son must be doing well, house prices in Bristol are eye wateringly high! I plan to move there myself once my remaining kids have flown the nest as I won't exactly still need this big house just for little old me. But I'll barely be able to get a 2 bed flat in Bristol for the same price as I can sell my big 4 bed detached house in Swindon... whereabouts in the city is he buying?
If you want me to make you up a little map of where the best street art is, just ask. It's not always in the most obvious places.
MBJ I just googled Craig Y Nos castle, it looks lovely. Looks like you can stay there too. Fancy!
And there is no such thing as a stupid question as far as I'm concerned, ask away! Yes the paintings are sprayed directly onto the building walls, and yes it is permanent. Modern spray paint will stay looking fresh for years and years, it doesn't fade like it used to.
These particular paintings (from my previous post) are predominantly on "invitation only" walls. Not ones that are open for anyone to paint on. So these should and probably will stay up and unmolested until next year's Upfest festival when new nominated artists will overpaint them with something new.
On public walls, where anybody can paint freely, a design is lucky to last a week! There is an unspoken rule in graffiti that you only overpaint someone's work if you can do something at least as good if not better. It is considered very disrespectful to paint something of lesser quality over the top. There is a whole etiquette thing
That's why I don't paint in public very often, I'm not good enough!
Edinbird, have been chatting to you offline about the problem with your friend, but didn't want to ignore it on here in case the other ladies thought I was being insensitive! But yes you know my thoughts and they are roughly in line with everyone else's, I really do admire how much effort you have put into the friendship and trying to help him become a more grounded person, but right now there is not much you can do for him and you really do need to put yourself first right now. The justice system will do its thing and hopefully for your sake and his there will be a positive outcome. Until then, put some of that effort into your own self care , you need it and deserve it x Time to lean a bit more on your family and other friends (like us! We are all here for you!)
Trixielady really glad that you are feeling a little better and able to get out and about. The "forbidden garden" sounds good, hope you didn't get caught in the act!!
All this talk of zoledronic acid reminds me I have to make a big scary dentist appointment I have always been terrified of the dentist and subsequently my teeth are not in the best shape. Before I can commence the Z A stuff I have to have 2 to 4 (he hasn't decided yet) dead teeth removed at the back of my mouth. Not looking forward to that at all! Onco said I should get it sorted once recovered from chemo and rads, so I guess that is about now. But selfishly I just want a month without any medical intervention after so much of it throughout the rest of this year, so I just can't quite face making the call!
Must do it this week. Must be a big brave girl.
Also interesting reading about all the trials. None of my docs have ever mentioned any trials to me.... so I assume I'm not doing any (I figure I'd know??)
Sonia, glad to hear that your rads are going well so far bar the tiredness. Have fun at your caravan!
Daisydi, really sorry they are messing you around so much with your rads! And leaving you stuck in uncomfortable positions for so long
To answer your qu about whether i could have driven myself, I reckon I probably could have managed for the first fortnight, as my tiredness didn't really kick in hard until weeks 3 and 4. Although that said I remember being really wiped by the Friday even in the first 2 weeks, and overjoyed that it was nearly the weekend. Part of that was down to having to get up so early (they picked me up at 8ish every morning, sometimes earlier, and I'm really not a morning person!), so I think if I was driving myself I probably would have asked to move to slightly later appts.
Sorry to hear it is making you tearful exhaustion really is the pits
Trixielady I finished my rads last Friday, and all in all they went well. I seem to have (so far, they can still build and occur in the 2 weeks post treatment) got away with very minimal side effects and I didn't find the whole process too gruelling (other than the early mornings already mentioned). As the others have said, it is a little relentless heading to hospital every day for a month, but I found that the time zoomed by and it was soon over.
MBJ so sorry to hear what your mother in law went through at her advanced age Honestly if I get cancer again at 93 and a doctor comes at me with anything but morphine I shall hit him over the head with my walking stick! Why do they put someone through such gruelling treatment at the end of their life, instead of just making them comfortable, it makes no sense
My dad was going through similar when he was 92. He had lung cancer right at the end and they were making him have CT scans which terrified him and taking blood and giving him infusions and generally making him miserable and one doc started talking about chemo! Can you imagine luckily a different, far more compassionate doc took over and agreed to give only gentle palliative care.
They still wouldn't let him out of the hospital though so he spent his last few months on a loud, discordant ward which was definitely not what he would have wanted at least he was sufficiently drugged up he had little idea what was going on :/ so sad.
As for your implant, how long have you had it now? Can't remember when you had your op. I went for a nice walk on Monday with my chemo buddy t'other Sarah, she had her mastectomy and implant a fortnight ago now. They've done a great job visually matching to her other boob but the implant is super hard and firm and unnatural feeling. They have told her it will soften up over time and become more naturalistic and comfortable. Has that happened in your case? She was wondering how long it takes if so...
Rosina, sounds like you had a good old emotional vent the other day to the radiologists and macmillan nurse. It is so good to let it all out, I hope you feel better for it?
(On a side note I haven't cried for months, not even in my counselling sessions last month, only time I can think of was when I saw the Apollo 11 documentary in Glasgow! But that was more a happy cry at the magnificence of space travel I must be well overdue for a good weep!!!)
(And I LOVE rollercoasters )
As for couples counselling. If there exists a man on earth who would enthusiastically agree to that under any circumstances, I'm yet to meet him. I think you would need to trick him into going, somehow, like when you tell a kid they are going to Disneyland but don't mention it is via the dentist's.... in all seriousness, if it is required, then I hope you can eventually persuade him.
MBJ!!! I adore your hairrrrrr!!!!! But that will come as no surprise that shade of subtle pink suits you SO much!!!!
And good job granddaughter with the vaseline at the hairline
Sounds like you have a great weekend coming up with all those parties, enjoy!!
Susie I'm glad you have gotten through your side effects for this round of the CT, it will be easier next time as you will know what to expect and roughly when it will hit and when it will subside again. That helps a lot.
As for editing photos to crop them and resize them for uploading, I use a free app called picsaypro. It is fab, you can also enhance the pics and add effects and captions etc if you feel so inclined.
A trip to see the northern lights at Iceland-the-country-not-the-shop sounds amazing! Lucky you!
Thanks for the reminder re travel insurance. Before I go to New York I had better phone mine and see how much extra they want from me to cover any potential complications while I am away from my "pre existing condition" (not that hopefully there should be any).
I also love lazy rivers
Re "normal bras", I haven't worn one since January! I've only worn my post surgery bras since, in fact I chucked out all my old bras so I have no choice! As I am DD on the left and C on the right until end October when the surgeon is going to even me up, I can't really find a normal bra to fit, so it is post surgery bra time for a few more months yet, and then I will go on a big underwear buying spree in November!
Hopefully I'll have lost some more weight by then too so I'll actually look half decent in them too!
Oh that's a point - I've now lost 13lb since I finished chemo. Nearly a stone down. Go me!!! 1 stone 9lb to go to get back to my previous weight.
I start back at the gym tomorrow (I will be in that pool first thing in the morning!!!), so that will help.
Daidydi, really glad to hear that yesterday's rads sesh was a lot easier. Here's hoping they carry on like that.
Ocean, glad to hear you are surviving the heat over there on the mainland. I was thinking if you last week when it got really hot here as I know it is even more so there!
Also good that they are finally pulling their finger out with your rads. The first session can be a bit of a faff but hopefully after that you will settle into a rhythm with it, and before you know it it will all be over. Definitely use that free taxi.
My sis just got home from this year's WOMAD, she said it was great as ever. It would be great if you and Rosina go next year. I would pop down for the day to see you both (if they do day tickets?) as it is not far from where I live. Don't know that I'd fancy the whole weekend though....
Ooooh we just passed 6000 posts!!!!
Oh one more bit of news from me, my youngest passed his driving theory test yesterday, first attempt too, so he is delighted with that. He will be driving before I know it! (Which will be handy as it means I won't have to be his taxi any more )
Right, I think I had better get out of bed
I started a HUGE sort out of my arts and crafts supplies yesterday as I have a ton of stuff I know I'll never use and my craft corner looks like a particularly untidy branch of Hobbycraft Going to sell some bits and give a lot away, and then hopefully have more space to actually use the bits I keep. That's the plan.
But it is going to be one of those jobs, I can already tell, where you get 2 days in and you are sat on the floor surrounded with mountains of cr*p and you wish you had never started
Going back in , wish me luck! If you never hear from me again, I was probably crushed under a falling pile of patterned papers and beads....
Catch everyone later, love to all
Daisydi glad to hear rads went much better yesterday and your scan is getting arranged hopefully they'll also change some of your late appointments fingers crossed for you xx
Ocean21,pleased your rads are in hand at least getting a taxi will take the stress of parking away and driving there and back away. I really love the photos beautiful colours. It will be lovely for you to have your son and grandson stay (unfortunately I have no grandchildren yet) xx
Sonia28, Nettienoo, Marlyn, Sar, Implausible, SusieB, MBJ, Edinbird, Rosina, think about you all the time ladies, never heard from Stargazer1 and Sandra lately hope all is well xx Lovely support still from the other forum xx
Beautiful photos of flowers as always Ocean21🌺🌻🌼🌼☺. Glad they've sorted out the rads for you. Onwards and upwards as they say. Take care, Susie B xx.
Hey lovely ones,
The fierce hot weather we had a few days ago has cooled down a bit and we’ve actually had some rain. Don’t think we’ll get through summer without a ban of some kind.
The sunflowers in the fields are are completely frazzled already and they’re really tough plants.
Sarah, well done on finishing your rads. Great news about your skin too. I’m hoping my will cope with it. Hoping also that I miss the fatigue too.My first session is on Thursday morning. My son and grandchildren arrive on the 10th for 2 weeks so I really don’t want to be knackered while they’re here.
You post some fab photos of the art that you see. The scale detail of artwork is stunning.
MBJ , your landscaping is really taking shape. I’m sure it’s going to look beautiful when it’s done. Shame about the tarmac,but, it’ll last a good while and by the time you’ve driven over it a few times the hardness of the colour will get knocked back a bit. Id love to get our drive sorted but it’d cost a small fortune so I’ll leave that for my lottery win That blush pink on you hair looks lovely, great contrast with your eye colour.I hope that you keep doing it.
Edinbird, sorry to hear about your bestie but as others have mentioned focus on yourself now. Doesn’t mean that you care any less for him but you do seem to pour a lot of energy into him. Time to use some of that on yourself.
Daisydi, your travels for your rads sound draining. Not surprised that your energy stores are in your boots. The radiologist gave me a form that allows me to get a taxi to take me to me session and bring me back. Its about a 45 minute drive from our house to the department. It’s covered by my healthcare so It’ll be interesting to see how it works.
Susieb , cardboard dinners . I remember them! My tastebud were completely knocked out during chemo. They’re much better since finishing thank goodness. Funnily enough like you , I found any meaty fleshy food tasted horrid.
Rosina, if we lived closer to each other I’d join you on your walks and trips. Definitely be up for going to WOMAD by the way. Went years ago with my eldest when he was a baby , he’s now 32
After chasing the radiotherapy dept and getting nowhere, I contacted the nurse coordinator in the oncology dept to see if she could find out what was going on. I should have started having rads this this week and all the secretaries kept telling me was that my file wasn’t ready.
The oncology nurse said that the truth is the radiotherapy dept is well behind with appointments. She had a meeting with them on Friday obvs you can’t have oncology patients waiting until whenever radiotherapy get their act together. She rang me early Friday evening and said radiotherapy would ring at the end of this week to give me a start date next week .
As I was worried about not starting a month after chemo like I’d been told she’d checked with the oncologists and they said it’s fine to wait up to weeks before starting rads. Naturally, I relaxed then out if the blue late this morning I get a phone call ‘ can you come in today to start to have your first session?’ Honest to goodness,how ridiculous is that. The oncology nurse did warn me that they sometimes they ring one day for you to start treatment the next. I didn’t even get that !
I couldn’t go today as I’d made appointments with a builder and heating engineer to come to the house . Other half doesn’t speak French so I had to be here. Anyway , Thursday it is. I’m a bit anxious, I guess it’s a new thing and I just have to get into the routine of it.
Right , bed time. Some photos for you.
Im done and home. Much better tonight. quickest its been for treatment so I feel much better now. Still want to try and change some of the late ones though. Spoke to breast care team today and they are sorting my DEXA scan and said I should really start on the Anastrazole so will get prescription tomorrow hopefully. Much go and cream up now. Thanks for all your support and MJB your hair does look fab xxx
Rocking the new look MBJ,
thanks for the hugs SusieB.
I asked H1 again about the 3rd ingredient for acidifying soil and he said ‘peat’ . The wood clippings are very important though. Off to walk, feed the ducks and eat some blueberries. A friend came round this afternoon and H1 made sure she was fed and watered, as I said practical. I do appreciate this.
Re. the hiking in Dartmoor it is a guided group of 6 of us.
Sorry I forgot to say you can crop your photos on your phone if you go into edit mode, mine then save in edited photos in my file. I have to do this every time I post one.
Firstly thanks for liking my hair. Susie B the colour I used washes out and has no bleach in it so hopefully won't harm my new hair. Will be a while before I use anything more harsh if ever to be honest. As for the bras I think you might find that you will need to wear a good support if you have had your lymph nodes cleared as I find that's where I get most of the swelling and discomfort on my bra line under my arm, the firmer bra seems to keep it in control a bit more. But of course this might also be due to me having an implant.
Hope you are all having a reasonable day. I am off out in a bit to take Isabel (granddaughter) to have her nails done, we are all off to an engagement party on Friday and my sister is having a big party on Saturday for her Pearl anniversary, retirement and birthday WAW.
Firstly quick post surgery/chemo update. My swelling from surgery has definitely reduced since I can now wear my normal size 34c post surgery bra without an extender☺ and my size 36 ones are are at the smallest they can go. Just wondering when I can wear my normal bras again🤔. As for any lasting chemo effects, food still doesn't taste quite normal but otherwise everything else seems to have settled down☺ until the next round☹. I went out for a walk around our village yesterday and took some photos on my phone. Unfortunately I can't post them as they are too big - I forgot to reduce the number of pixels - so I'll try again when the weather improves. Didn't feel as tired following my walk as I did 11 days after FEC. Hubby has suggested taking me to Iceland, the country not the shop Implausible😅😅, when all this is over with the aim of seeing the Nothern Lights. I've today been looking at the website of the company we've used in the past and ordered a brochure for inspiration. Talking of holidays I've also taken out a new multi trip policy. Our current one expires next month. I used one of the brokers recommended by Macmillan. They came up with fairly reasonable quotes and the questions asked online weren't too bad so it wasn't quite as traumatic as I was expecting. That's enough about me. Onto the posts.
Daisydi sending you ❤❤❤❤❤ as you sound as though you could do with a few. All that travelling, having rads and getting home late is bound to reduce you, and let's face it, any one of us to tears. I know I was feeling guilty about my hubby driving me when it comes to my rad sessions but as I hear how tiring it can be I'm not so bad now.
Love the hair colour MBJ. Might try that before I commit to something a little more permanent in pink once all this nonsense is over and I can start to colour my hair again, which won't be for ages yet😭😭.
Rosina, hugs coming your way too❤❤❤❤❤. This Barrying bc seems to catch us out emotionally when we least expect it. Wise advice from the nurses about doing the things you enjoy. As for couples counselling I don't think many men would contemplate it. I think it's in our nature to talk about anything and everything but men don't seem to be so open. From what I glean from what my hubby tells me there are 3 of them whose wives have been diagnosed with bc, one recently diagnosed and the one who passed away last year (not bc related) and me. They will ask after the wives but not ask each other directly how they're (the men) coping. Men, in general, just don't seem to talk about personal stuff. Glad your Tamoxifen meds have been sorted.
Hope all of you out there having a rough time at the moment see some improvement soon. Think of each and everyone of you in this Feb group all the time. We will get off this rollercoaster eventually and enjoy a ride on the Lazy River. xxxxxxx
We used L'ORÉAL Colo Rista this is light pink lasts a few washed but just bought medium wear now as it looks brighter. But I did not need all the tube as not enough locks yet. Easy to do just squeeze the tube and rub it in. Isabel knew to put vaseline on my forehead and around my neck though. 15 year olds know all the beauty tricks.😃
This is aimed mainly at you but girls I hope it cheers you up. My granddaughter gave me a colour makeover yesterday. It's lighter than we thought but I like it!
totally empathize with you on the crying.
I am on rad #6 (today) yesterday when the radiologists (lovely girls) asked me how I was I welled up and told them my life history !!! They were excellent, didn't leave yesterday till 1pm (more off loading at the Macmillan Cancer Centre). I didn't feel like posting as it was all too much.
Much better today , a better night's sleep - I am sleeping in our spare room, nurses checked in with me again today. I was told to do things that I enjoy, spend about 30 minutes per day on school prep and continue to prioritise myself as even though it does not look like radiotherapy has an impact on the body it does.
In my review today , I discovered that I should have started on tamoxifen 3 weeks post last chemo.
So I got my tablets today and have taken one. H1 has been warned that I could get even more emotional so he thinks its best that he does not talk to me at all
I did suggest couples counselling but he is not having any of it. He does practical.
Re. driving I have driven myself up today and yesterday. Twice last week, 1 bus, 1 with H1.
It's OK Daisydi, hang in there on the rollercoaster (I HATE rollercoasters). We are all with you.
I can imagine how relentless having radiotherapy every day is. It was a big factor for me when deciding between a lumpectomy or mastectomy as I did not need it with the mastectomy choice. When I had to make up my mind it was only 6 months since I had cared for my 93 year old mother in law who had had radiotherapy for a cancer in her neck. They kept her in hospital for eight weeks for daily treatment. At her age it was cruel, and I think she would have been better off spending her last few months at home. Which never happened. So I made a decision mainly from the heart rather than head. But whatever we choose has its sideffects. The implant is not the most comfortable thing to live with. Why anyone would have them for vanity I will never know. Hope you feel better now. Get some ready meals from M and S in for after treatment and bu..er the cooking.
Hi Trixielady, I have 17 sessions left! I am not a good passenger in a car as I get car sick so I thought I would be better driving myself if I was able to. I will go on for as long as I can manage. I am currently chasing up my DEXA scan before I start those hormone tablets.
Love to all x
Morning lovely ladies
Daisydi, I feel for you its still so emotional and obviously the rads carry side effects having a good cry really helps , is there no chance of any company to make the visits easier how many apps do you have left?? Xx go girl you can do it xx
Implausible how it going with your rads?? Xx
can totally empathise with you on the emotional front, although rads is nothing like chemo I found it unrelenting....it all just builds and builds.....in the first week I managed to drive myself twice...after that I just didn't have it in me, driving needs too much concentration and I wasn't capable.....I would sit there in a zombie state.....on the last day ( had to go in twice) I cried all the way home......
do you have anyone that can drive you? Xxx
So Ive had my 3rd rads. Left home about 5.20 and got back just before 9 and then had to cook dinner! Was on table for about 40mins again. They had trouble setting me up. Different room, different machine. They were running 40 mins late which I was told doesnt happen for the evening appts. Lets see what today brings appt is a bit earlier at 5.45, yesterday it was 6.30. I am driving myself and not sure if I will be able to continue if I get too tired. Sarah would you have been able to drive yourself every day? When I came out last night I was texting my sister to let her know I was leaving, walked into a wooden post, got to my car and then couldnt find the ticket. Thought I must have dropped it when I hit the post so went back and luckily found it on the floor. I was laughing with 2 ladies who were watching me then I burst into tears and ended up crying all the way home. Dont know what is happening to me. I am an emotional wreck!
The immunotherapy trial sounds promising Edinburd. I don't think I could have done that because I had surgery before chemo and I responded well. (I was meant to have 8 at first, but it was reduced to 6) I suppose they can't just tell us to take asprin as a matter of course yet, but as you say, you don't want to take a placebo if there's a chance of asprin making a difference xx
I have had the one infusion, I felt flu like for less than 24 hrs a fine after that. Then every 6 months for 3 years.
I have just started the aspirin trial, I was told it have to be started within 6 weeks of my radiotherapy finishing.
Well I feel the tiredness has kicked in, I’m with you Sarah with the difference between the chemo fatigue and chemo tiredness, I slept for an hour this afternoon, and yesterday haven’t done that in a long time.
Only one more to go, I’m slightly red on my scar line, but no broken skin.
I have been reading but we are up and down to the caravan so signal isn’t great, I can read as it loads but then I move the phone and not enough signal to reply 😂 kids hate it 🤪🤪
I can’t get back on the site to catch up with everyone, it keeps taking me back to our first posts.
I’ll try again later,
i did remember Sarah asking what weekend feel
like as not working, they are different as hubby is around, i still look forward to them, it’s strange being off with the kids this year.
hope your all keeping well xx
I’ve been offered the aspirin one and C-TRAK where they monitor your blood for DNA from your lump and if they find any you might be randomised into having an immunotherapy drug every three weeks by IV for a year. You need to have not had a complete response to chemo for that one unless there are samples they hold from biopsy. I won’t go onto them until I finish all the rest of my treatment so I’m not sure why it was too late for aspirin for you since it seems you start that trial after treatment? If I can do both I’m minded to do the monitoring period for aspirin and then pull out as there is a chance you’ll get the placebo and if there is any chance of aspirin helping I’d rather have it since there’s so little else for us. I know that’s not especially fair but bottom line TN is nasty and I’ve got to think of myself.
Hi Edinbird, it sounds like your dad had horrible side effects after the infusions. Personally I've found them to be ok.
No, I wasn't offered any trials. I did mention the asprin trial, but that was near the end of my treatment and my onc said it was too late to do it and she didn't suggest anything else. I don't know if that was also because of my age-I was 58 when I finished chemo. Zoldronic Acid was the only thing that was offered to me. What trials have you been offered?
I thought I was going to be monitored more, but my onc discharged me when I saw her in Dec, so now I just have the yearly mammogram and check up with the consultant.,which I've got next month xx
Re the bone stuff - my dad had infusions for osteopenia. The first one gave him flu symptoms for about 6 weeks! He only needed three infusions though and the other two were much better. No idea if he was offered tablets he never said.
Jencat are there any trials you can do? I’ve been offered two once my surgery, rads and oral chemo are finished. Seems forever away... but I’ll gladly take whatever they can give me for TN
I know Marlyn, I'd rather that they didn't give us a choice!
Assume Clodronate is the same as Zoldronic? Taking the tablets for 3 years is quite a long time. I was told I could only have Zoldronic for 3 years, but if you were told 5, I might enquire about that as I'd rather have it for longer if it's possible-I'm TN, so the Zoldronic Acid is the only thing I can have post-treatment. Someone else I know as had it-not for cancer, but a problem with her bones and she was also told only 3 years, but i can't remember why.
I suppose if you'd prefer to have the infusion, you've got nothing to lose if you can revert back to the tablets if you don't get on with them xx
the tablets are clodronate....2 tablets everyday for 3 years....the nurse told me the infusion would be every 6 months for 5 years...she said it was absolutely up to me but it would be easier to stop the tablets if they didn't agree with me....and when she said if it was her she would be opting for the tablets first...I thought...well so will I then! But I'm now having a fe think.....oh eck!
Marlyn, did the nurse say why you were going to have tablets rather than having the infusion? I'd not heard of the tablets before and wondering if there's any advantage to taking them daily rather than the 6 monthly infusion that I have xx
yes i can, the nurse wanted me to go on the tablets first saying if I couldn't get on with them I could stop immediately have a wee break then infuse....xx
I think you're right Marlyn, the tablets do sound a bit more of a palaver! I'd probably forget to take them half of the time!
The infusion itself only takes about 30mins and then a quick line flush afterwards. If you changed to the infusion, but didn't get on with it, could you change back to the tablets? xxx
Hi Susie, yes I have been reading your posts and so sorry to hear that you've got more chemo to go and surgery still to come. Thank you for your sympathy re mammogram. I've got to wait until I see my consultant on the 20th before I get the results! I must admit I am feeling a bit more anxious about it this year!
When I was told I had TN bc in June '17 I hadn't even heard of it and the two consultants I saw didn't make a big thing about it being TN. It was only my oncologist who seemed a bit more doom and gloom about the TN diagnosis.
However on a positive note, my daughter works with a lady who had TN over 6 years ago and is fine and I've friend who had it about 10 years ago, so I try to remember that when I have a wobble! xx
Am leaving in a minute for number 3. I will ask them today. Not looking forward to it. Im hot and tired ...
yes, I had one during rads....found out I was osteopenia .....said I would be getting another in the next couple of months....
i must admit...the more I ponder it the more appealing infusion sounds....I'm going to be ruled by tablet taking! Just about remember my anastrozole at 7 pm.....
im surprised you haven't had you density scan yet, you need a bench mark at least...xxx
Maryln my friend has the infusions and has no trouble with it. That is what I will opt for whenever they decide to offer it to me. By the way did you have a DEXA scan before you started on the hormones to measure bone density? I have not been offered one although they want me to start Anastrazole now which I am resisting at the minute.
Thank you jencat,
that all sounds promising, the tablet are twice a day and to be honest seem a bit of a faff..i.e. Taking on an empty stomach keeping upright for at least an hour then taking another one in the afternoon (!) imagine going away and having to factor it in? Along with the hormone inhibitors..... the thought of going in and getting it out the way is rather appealing! Xxx
Hi Jencat, thanks for getting in touch re being TN and supplying me with some extra information . Like you I haven't got the BRCA1 or 2 gene either. Don't worry I haven't googled anything since my diagnosis last December. I don't know if you've read any of my posts but it's less than 2 weeks since it was confirmed I was TN. Original biopsies couldn't confirm and my tumour was checked both here and overseas before being confirmed so it's only recently that I've looked into TN. My onco hasn't mentioned bone meds yet but I will be asking at my meeting with him next week. Zolodronic acid is what I'm minded to ask for. As I'm on the ROSCO trial I'm continuing with chemo, 4 rounds of CT, before surgery I had 4 rounds of FEC which shrunk my Gremlin but wasn't so good at destroying the cells in my lymph nodes. I had full ANC which was always on the cards along with a lumpectomy.
2nd mammogram the day before your 60th I can sympathise with you on that one. I spent my 62nd birthday last December sweating on my biopsy results that were due 2 days later.
All the Best, Susie xx
Hi Marlyn, yes of course. I wasn't offered a choice, so I don't know how the infusions compare to the tablets. The infusions have been fine and I haven't felt any side effects, apart from the last one where I did feel a bit achy afterwards. To be fair though I had it only 10 days after my Dad died, so I think I was already tired and run down before I had them, so it might not have been the infusion at all. The only downside I've found is that I have to go to the chemo unit to have them, which makes me feel a bit emotional. On the plus side, you have to have a blood test a couple of days before you have them,which could be a bit of a pain, but I find it quite reassuring to know I'm still being checked.
You do have to have regular dental check ups as it can affect your jaw, but when I had to see a consultant at the hospital about my teeth, he said that it was better to look at the bigger picture and to have the Zoldronic Acid xxx
can I ask how you're getting on with the infusions? I've opted for the tablets twice a day....but am now actually considering the infusions just to get them out the way xxx
Hi Susie B, I'm from the Oct'17 group. I'm TN and like you, don't fit any of the usual criteria for why I had that type of breast cancer. I also haven't got the BRCA1 or 2 gene. I haven't googled it because I was told the information is now out of date. My oncologist said that the risk of recurrence is higher in years 2&3 and by year 5 the risk of recurrence is the same as other bc's, but the good news is that by year 8 the risk of it recurring is low. I've got my 2nd mammogram since diagnosis next week, the day before my 60th birthday!
I'm having Zoldronic Acid infusions every 6mths for 3 years (I had 3 every other chemo and I've had 3 so far independently-I have to go back to the chemo unit for them) I don't know if your onc has mentioned them to you, but they are bone strengtheners and help to stop bc spreading to the bones. and they're for post-menopausal women x
Loads to catch up on since I was interupted mid-post by the offer of an ice cream🍦 from my hubby.
Deano, great news regarding your post surgery results. I didn't think to ask if I was cancer free but the surgeon and my bc nurse both explained that everything was out and that continuing with chemo CT and rads were both an insurance policy and part of my trial. I wouldn't have minded seeing what was responsible for making 2019 such a 💩 year but my Gremlin and nodes are currently spread around between an NHS laboratory in the UK, Prof. Bartlett's laboratory in Canada, and Edinburgh. My blood samples are held in Cambridge and Edinburgh universities. For me the overriding factor was discovering 9 nodes were positive and that I was highly likely to be triple neg which for me took the wind out of my sails so I couldn't take in that Gremlin and his family had been evicted. Totally understand your initial reaction.
Edinbird, sorry you're having such a tough time at the moment. I know you probably don't want to hear this but please, please, please start to put yourself first. There are times throughout our lives when, much as we love our friends and family we have put their issues to one side and deal with them at a later date when we are strong enough to cope. Lecture over. xx
Daisydi, I'm the same as you in that I don't want to read or know too much, so I just keep to the information within the Breast Cancer Care website. I do know the chances of recurrence during the first 5 years is higher than the other b cancers then it reduces. I also know statically my chances of being trip neg were pretty low, I'm not black, I'm not under 40 and most definitely not pre-menopausal, but that was the final conclusion. So basically even with odds in my favour it didn't help. As you say there is nothing we can do about it and just accept that we will all respond differently to our treatment plans both now and in the future.
Rosina your Biography of Cancer book sounds intriguing. Sorry things don't seem to be going to plan regarding a trip to Norwich. A break in a Boutique hotel is the kind we go for. So, are you going camping and walking by yourself?
Implausible thanks for the warning regarding off the cuff comments to medical staff about putting on weight and diet. I won't mention cheese toasties and pizza again🧀🍕🍕😃. Loving the photos of the Bristol artwork. The one of Greta is a very good likeness. My favourite has to be the girl and tiger.
Trixielady good to hear from you and that things are improving and going well for you.
Right, that's it for now. My tummy is telling me it wants food so I'm going to have some freshly picked lettuce and tomatoes with whatever is lurking in the fridge. Love to you all xxxxx
Edinbird so sorry to hear about whats going on omg unfortunately life is **bleep** at times and sometimes we want to see the best in everyone they always say innocent until proven quality and no smoke without fire, so please think about yourself and try not to worry unfortunately only your friend and his EX will truly know and sometimes we can't see the wood for the trees when its people we love , like always we're here for you sweetheart but please don't make his pain yours, bestie or not xx I know its probably not what you wanted to here xx
Morning ladies , hope this will be a good week for you all xx Wishful thinking xx
I back at the hospital for injections number 6 and bloods waiting for heart scan appointment to check all is as it should be!
Doing well so far remembering to take the letrozole. Still suffering with side effects but learning to unfortunately take regular pain relief.
Lovely photos Implausible ,I've still got limited eyebrows & lashes but hair in coming in on head and legs
MBJ love the sound on the walk & Castle but I think 245 miles is a bit far for a walk haha so we went to Richmond to visit the forbidden garden and enjoying a slow walk and lovely lunch absolutely shattered by the time we arrive back home but it felt lovely.
Stay positive and brave my lovelies for the next moves xx
Morning all xx second week back to work and I’m exhausted. Barely slept maybe 4/5 hours if I’m lucky? Got dentist first so I should stay later too to make up the time but not sure I’ll have the energy.
I was still a bit sweaty but that’s not really the issue. My head is spinning constantly as my bestie is currently in prison 😢 an ex has made various allegations against him, pretty serious stuff. I don’t want to go into it and shouldn’t really. So I’ve been pretty down since Thursday since he was arrested and it’s hard to think of anything else. We’ll find out if he’s getting bail on Friday but if not that means he’s not going to be here for my operation, my birthday, all sorts. Knowing some of the chats we have had on here about domestic issues I feel awful that I’ve to tell you this, but I have to believe he’s innocent and my heart is broken that this has happened. Sorry if I’m quiet but I’m just trying to manage each day without getting too upset. I’ll speak to you when I can xx
I love the street art, can I ask what is probably a silly question but are they actually painted on the buildings and if so are they there for ever or do they wash off.
We have been out walking with our grandchildren in the country park adjacent to Craig y Nos castle made famous by Adelena Patti the famous opera singer and reported mistress of King Edward VII. It's a lovely walk quite wild with a river for the dog to paddle in, and grandson who got his trainers wet. Dog is so tired tonight have not heard him bless him.
Sarah, my son is in the process of buying an apartment in Central Bristol. When I go down there to see it, I’ll check out the street art. Pretty amazing. xx
in answer to your question:
“Have you ever been to the Old Operating Theatre museum near London Bridge? It is well worth a visit.”
No I haven’t and I know exactly where you mean. I will have to add to my ‘ must visit list ‘ .
Re. Weekends , yes everything has blurred a bit into revolving around hospital appointments and I would often ask H1 ‘what day is it ?
Walked again today 9 miles. ( easy for me) , legs good, not puffed out so I decided for my birthday to book this Wandering Wild Weekend
as it really appeals .
H1 annoyed me today on the walk today, we argued about going to Norwich ( where to stay, how to get there , how much time to spend there etc) once rads have finished.
He wanted to drive there, and go to a number of places on the way up and around staying for a night at each place ( premier inns) . We have done this in the past ( all the way to Cornwall with the kids averaging 2 National Trust places each day) and when I suggested a train journey plus staying in a boutique hotel he wasn’t interested (boring) he wasn’t interested in walking and camping either (no soft bed) , so basically it was his way (which I have done in the past) or nothing. I was prepared to pay for the boutique hotel too 🤯. He once left me in the British Museum , to see a special exhibition on Indian Art by myself when he heard the ticket price. He literally ran out of the queue with his arms spinning like windmills. This is what growing up in the East End does to you.
So I have simplified it by going off by myself walking and camping.
He can do what ever he wants.
We met back packing in Thailand and I think he needs reminding that I am quite capable of taking off and doing things myself.
SusieB, I did ask him about the blueberries and acid soil. He said pine wood chippings, sulphur and something else ( can’t remember- will ask again) to acidify the soil.
Good night to all
ps drummer boy is at it next door 😬
Where'd everybody go?? Did my weird eyebrows freak y'all out???
Here's a pic of me and my buddies having fun today in Bristol:
And here's some street art as promised:
I had a really good day today but I've noticed something today and yesterday. Whereas with chemo tiredness you just felt sleepy all day, rads fatigue is different, at least for me. I can feel absolutely fine and lively and awake for a couple of hours and then Boom! I hit a brick wall. No warning. No gradual slipping into tiredness. I'm more like I'm driving along happily at 70mph and then I suddenly do an emergency stop! Weird.
So, yes, I left Bristol about 3 hours after getting there because I just couldn't stand upright for one more second! But until that point I was having a whale of a time
Hope everyone else had a nice Sunday too x
Hope we are all enjoying the weekend
For those of you who have been off work for a long time, do weekends still feel special? Or just like any other day?
Deano thanks for the compliment my eyebrows didn't disappear completely, so what you can see in that photo is what is left of my brows following chemo, there hasn't been any regrowth yet. They are a bit scraggly as you can see from this close up, but it's better than nothing
I do miss my old brows though. They were naturally quite dark and full, I never needed to add pencil to them or anything:
(Best example pic I could find of no make up me with my old brows is this charming post op selfie )
Hopefully they will come back to me one day! At least I have had a welcome couple of months break from plucking them
And my head hair isn't growing back as well as the photo on my previous post would have you believe, either. The hairs you can see in that pic are the ones the cold cap saved which are now over 1cm long. Actual new growth is still barely 1mm long and only happening at all at the back and sides, nothing yet on the crown or the front of my head. But hey, I'll get there eventually
Anyway, much more important than me whinging about slow hair growth, your news from your meeting with the consultant was amazingly fantastic!!! Very happy for you!
Such a wonderful feeling to know that there is nothing malicious left in your body trying to do you harm.
I totally would have wanted to see the lump in the jar though too I always assumed they were sent straight off to the lab to be sliced up and examined, didn't realise they kept them!
I'm also glad that they drained your grapefruit and it is now behaving itself a bit better, and that you got an apology for how you were treated before.
And from a personal point of view it is reassuring to hear that your legs are wanting to walk again now. Gives me hope that eventually mine will liven up a bit! I'm now 8 weeks post chemo and still really struggling to walk long distances and up hills. But I don't know how much of that has been exacerbated by radiotherapy (which I started 4 weeks post chemo) as that also causes fatigue. Hopefully now that that is also behind me things will start to pick back up.
Edinbird, definitely keep on keeping on with those exercises, boring as they are, they will take you healthier into your next op. I still do mine twice a day (it has been over 6 months now so they are just part of my daily routine), only takes 5 mins, and they really do help. I notice increased stiffness in my arm/shoulder almost straight away if I do forget them for a day or two. And they are also good practice for rads because like Daisydi mentioned, you do have to lie there for ages with your arms up...
It is so difficult when you see worrying stories from other people in forums. It's easy to say "just don't look", but I get that you do need extra info about the triple negative stuff so will be drawn to communities where they share more specific and relevant experiences.
I guess all you can do is remember that the more people in a group, the more likely you are to see sad stories. But that doesn't mean that you are any more likely than before to *become* one of the sad stories. Eg if there is, say, a 2 percent chance of recurrence within 12 months of treatment (I've totally made that statistic up!!!!). Then if you are in a group with 500 members, you'll see 10 people pop up in that first year with early recurrence and it will suddenly feel super common or inevitable. That's just how the human brain works, it is very quick to panic when presented with even a small amount of anecdotal evidence. But your own odds are still 98% likely - ie almost certain - to NOT get a recurrence within one year.
So yes, the bigger the group, the higher the chances of enough bad news to become worrisome. Just try to count all the people who are happily in remission too, to balance out the fears a little....if you can. I know it is hard
You can tell I have a masters in statistics when I start ranting on about odds and psychology
I really hope that your sweaty nights will start to ease up soon, it has been so long since you got a decent night's sleep Have you asked the doc if there is anything they can do re the hot flushes? Or if they can at least give you a clue how long they might drag on for? If it was chemo that brought them on, then I'm sure the onco has seen it happen before with other patients so should have a view? Sleep deprivation is the worst
Daisydi, hopefully you will get through rads with minimum side effects. They said the same to me about how the boob might harden or swell - that hasn't happened. And I've had no soreness on the skin at all. Just a slightly stiff shoulder and a little tingling on the skin that I can only describe as the feeling you get when you've caught the sun a bit, but before it actually hurts...
As for the arm positions, you do get used to it. I reckon yours is so uncomfortable now because they kept you there for so long on day 1. 45 mins is a LOT of time to stay in position. Once you settle into a rhythm with it it is just 10 to 15 mins a day which is much more manageable. So fingers crossed it will get better for you over the remainder of your treatment.
Like you I try not to read toooooo much outside of this group. So many horror stories out there. But sometimes I do wonder if I ought to try to be better informed!
Susie I like your relaxed attitude to chemo this time around. I guess you have the wisdom of a veteran by now! Sorry to hear that the side effects have picked back up though. Must admit with T mine lasted a fair while too, especially the taste bud thing. Hope you can find some food that still work for you. Mine were cheese and fruit.
Talking of my love of cheese toasties throughout chemo, I mentioned this as an aside to my surgeon as I was trying to explain why I had put on so much weight, and she ratted on me to my GP be careful what you say out loud to doctors
As for Bristol, you can reassure your son, I'm there all the time! It's only 40 minutes down the road from me. And it is kind of equidistant from my house and my other half's house (we don't live together), so we often meet in Bristol at the weekend. Much nicer than hanging out here in Swindon
I'm very familiar with all the street art there. In fact I may have contributed to a few walls there myself
Daidydi, snakes in the sand dunes?? Is that a thing??? Eeeek! Hiw often do you see them??
Rosina - on my last rads appt they gave me permission to swim as soon as I want as long as my skin is still behaving. I'm hoping to reactivate my gym membership for August and be in the pool on August 1st!!! (Next Thursday). Can't wait!
And totally agree that we are very lucky to be going through treatment nowadays! My onco told me that even fairly recently (1950s or so) a mastectomy was incredibly painful, they would remove everything right back to and including part of the ribcage. He said women never really fully recovered. And rads were so much more dangerous before they had modern computers to precision aim.... they would often "miss" and cause serious heart and lung damage.
Having said that I am sure that they will eventually cure cancer with a pill and do away with all the stress and discomfort of chemo etc. And then people will look back to our times with horror too
I will have to check out that book, I find the history of medical technology fascinating. Have you ever been to the Old Operating Theatre museum near London Bridge? It is well worth a visit. Ditto the Surgeons' Hall museum in Edinburgh. I love all that stuff
Right, I'd better get up and showered and off to Bristol!
Catch up with you all later. No doubt I will bore you all with street art photos!
Take care all
Good afternoon Ladies,
Deano , very happy for your good news. Re. Tamoxifen I have been prescribed it once rads are done.
Which brings me to Edinbird, I read up on the drug and got myself into such a state it affected my sleep that night. So I agree with Daisydi, the medics are doing their best to help us so winding ourselves up is counterproductive. Keep doing those arm exercises. Rads can also lead to shoulder stiffness so it’s not a waste of effort.
It’s a month on from my last chemo and I am checking my hair, eyebrows, eyelashes- and then I say stuff it.
Implausible you make me laugh, I had two men for one of my rads sessions and there I was standing in my son’s dressing gown ( the story continued as the female radiotherapist said yesterday ‘oh, you have remembered your sons dressing gown ‘ she remembered it 🤪) which is then used to keep my legs warm . They all look so young in the radiotherapy Center. I feel like something out of ‘Alice in Wonderland’ they all seem amused with me especially as I chatter on about how nice the place is ( it’s only 5 years old).
So far no reactions from being zapped and the cooling gel was fab in the heat. Cold showers too.
Seasidesar bike riding!!!! I must drag my bike out.
Swimming , oh boy , hope that I can go as soon as rads are over.
I feel like I have turned into a donkey with the walking and just keep going head down one foot in front of of the other.
Left the car door open on Friday night so H1 sat in a wet drivers seat this morning, he patiently listened to me say ‘ not guilty - haven’t used the car’. Completely forgot about yesterday.
As I said , through the rabbit hole.
Seeing bunnies on my walks 🐇
Also have gone back to reading my ‘Biography of Cancer ‘ book - I couldn’t during chemotherapy- we are really lucky to be living now and not in the 19th century. The chapter on ‘radical surgery ‘ used to treat breast cancer meant that the whole of the chest cavity would cave inwards as major pectoral muscle was cut and complete loss of movement in the arm 😱 I am on the use of X-rays now . It is an excellent read.
As I said we are lucky.