SusieB, my chemo brain is in full flow too as I hadn’t realise your post was to me. 😂😂 sorry the SEs are kicking in and making you feel poop. Keep as cool as possible and hydrated.
Daisydi, Deano, Edinbird I’m thinking of you all and hoping you are all doing ok today. Xxx
Sorry Seaside Sar, addressed last post to Nettienoo instead of you.
Sorry Nettienoo you're probably wondering what the Barry I'm talking about. Chemo brain well and truly established🤔😣😩😩🤤.
Love the lake. At the moment I'm giving Codosyl a try along with Rosina's sesame oil which, unfortunately, I haven't been able to cope with for the past couple of days☹😩. Maybe tomorrow. 13th zapping. Does that put you over 1/2 way now? Take care Susie xx
Phew it's hot!
I'm sorry the T effects are hitting you, Susie. Hope they soon barry off. Have you got any mouthwash for your tongue? I used Benzydamine and Gelclair which seemed to offer a bit of protection at least.
Had my 13th zapping session this morning and am definitely developing a tanned boob. Shame the other one is so white 😂🤣
Took a bike ride around the lake. Lovely and peaceful. Worked out I can do stuff in the morning and then flake by the afternoon.
Hope you're all OK and keeping cool, although that seems impossible at the moment.
Hot and warm again in Somerset and I'm feeling 💩💩🤢🤢. T has thrown up it's side effects this morning, although they did start to kick off yesterday dinner time. After looking forward to my home grown beans I couldn't eat them☹. Anyway woke this morning feeling very tired and aching. Paracetamol took ages to work. Just had to take an anti-sickness tablet as now feeling nauseous🤢. Also tongue is starting to look suspiciously white. Chemo just keeps on giving. Also have had to ask hubby to come home from work and take me for my PICC care as I'm definitely not fit to drive🚗. Intend to chill this afternoon.
Thanks to all of you who have taken the trouble to get back to me regarding Zoledronic acid and clodronate tablets. I'll ask my onco about them at my next appointment.
Hope all of you having rads today get zapped without any delays. It's way too hot to be indoors.
Thinking of you both today Edinbird and Deano. Keep us updated when you feel ready.❤❤.
Will catch up later with everything and everyone when I'm a bit more 'with it'. xxxxxxxx
Implausible /SusieB, I was told about hormones at the start but then never heard anything until late on in chemo my oncologist said we'll talk about them when your well enough and had a rest from treatment so I'm guessing once they see how the rads have gone they'll start you on them, think it all depends on menopause and er + what one you go on. I'm on letrozole and not really sure of side effects due to suffering some from my herceptin injections or chemo possibly although it was stopped in June, most days are still bad with a few good hours unfortunately still not well enough to return to work xx
Susie my doc mentioned both the zolewhatsit acid and hormones in passing right at the beginning (back in January), but nobody has said anything about them since.
I next see my onco in September, presume he will start them then.
Everyone's regime and timings seem very different...
Thanks for popping in to our group, much appreciated. Zoledronic acid hasn't been mentioned at all so I will definitely ask about it when I next see my oncologist. xx
i had zoledronic acid infusion, I’m now due 31st Dec although I am going to change it as day after I felt very flu like, cold then shivering went to bed early and symptoms were all gone in the morning, so would like a few drinks this new year, as hopefully won’t have a chest drain attached.
Susie, I'm from the Oct '17 and like you, TN. My oncologist mentioned Zoldronic Acid to me before I started having chemo. I had infusion of it every other chemo and I go back to the chemo unit every 6mths for it for 3 years. (I've had 3 so far after chemo finished) x
1 zap down, 19 to go.
Much pleasanter experience than chemo therapy.
The R1 gel was lovely to put on after treatment.
Last zap is on my birthday on the 19th.😂
Remembered to take a dressing gown with me today, so I borrowed my son’s ( mine is too fluffy and a pain to pack) quite funny to be standing in it and chatting to the medics 🤡
It is actually cold in the zapping room. My car dashboard was reading 32.5 degrees on the drive home.
Walking this evening ⭐️
we we were in Nicosia....with the United Nations, 92. To 94. Lol we also hired the fridge, and washing machine ...it was the thing to do...we visited the sovereign base areas quite a lot, odd to think we overlapped....did you ever go to the fish n chip shop in dekalia? Sp?? I think it was something like cessi's bar??? Xx
SusieB, yes indeed yummy.
Marlyn, forgive me if I have asked this already at some point but when and where were you in Cyprus? We were in Episkopi from 91 to 93. Those hot summer days were pretty unbearable sometimes. You’ve brought back a memory of a really dodgy fridge freezer we hired from a back street shop in Limassol whilst we were there and used it as a beer and wine fridge. I’m sure it wouldn’t have passed a safety check in this country. 😂 x
You lot make me laugh! Tongues in yoghurt pots and freezers along with an over zealous moderator 😂🤣
Nettie, you hang in there. Keep cool, eat ice creams and hopefully you'll avoid any troubles. Before long you can tell FEC to F*** off!
Susie, I don't blame you for taking paracetamol. Like you say, why suffer? Hope you can enjoy the sunshine (in small doses).
Daisy, enjoy your dip in the sea. I'm well jell. That's one of my favourite things to do. Hopefully in a few weeks (skin permitting). Hope your skin behaves itself with the rads. I'm finding aloe vera gel a lovely relief when mine feels a bit tingly. No more squeezing 'blackheads' now 😂🤣
Was wondering about Sandra and Veronica too. It's been a long time since we've heard anything.
Hope everyone else is having a good day.
Nettienoo I think you need to stick to a spoon 😃.
I had my first bone infusion with my one and only chemo, apparently I am due another one in August. Everywhere seems to do things slightly differently. I have no idea what the side effects might be as I was so ill anyway. Let you know in August (drum roll please) like a soap opera, the next thrilling episode.
Oh nettienoo...you filthy beast!!!
But it reminded me of when we lived in Cyprus, that first summer was unbearable and for some reason I thought it was a good idea to pop my head in the freezer ( don't ask) I needed relief from the vile humid heat, I then ( without thinking) licked the ice...can you guess the rest? Yes! My tongue stuck to the freezer....it was like something out of laurel and hardy sketch....hubby thought it was hilarious and grabbed a camera....still haven't forgiven him! Xx
Just in the middle of dyeing some sandals and saw your post. At least the moderators can make us laugh on occasion🤣🤣🤣😂. Now if it had been another similar word I'd have understood as that means something completely different. Now go wash your mouth out with soap!!!!☺
Nettie that made me laugh. I used to suck on a lot of ice lollies. Wouldnt have liked to have put my tongue in frozen yoghurt!
PS just glimpsed down at my chest and thought I had a huge blackhead that I was about to squeeze, then realised it was my tattoo!
PPS you are obviously on their radar Nettie x
Hi Nettie Im back on the antihistamines so itchiness has gone but feeling very worried about starting rads tomorrow and what it will do to my already damaged and sensitive skin.
Susie I dont remember my team talking about biphosphonates at all but my friend started the infusions when she started on the hormone treatment so I am assuming I will do the same.
Enjoy the sunshine x
a very good question ref bone meds. My oncologist mentioned these at the very beginning of my treatment plan ( back in January) I had a bio phosphate clinic during rads where the nurse gave me my options..i.e. Infusion or tablets, in the end we decided on clodronate tablets , she said if I were to have any side effects ( although she is confident I won't and the worse thing would be possible heart burn/stomach acid) I could immediately stop and go onto infusions...so it kinda made sense to me....
I am still waiting on an appointment to get me started on these...she said it should be August. I finished chemo end may and rads ....must be coming up 4 weeks now....so there's obviously no rush ....xxxx
In fits of giggles here....the moderator obviously doesn’t like the phrase “tongue in” in last post. Ooooh errrr missus! 🙊😂😂😂
Ps Susie, I have been sucking on ice cubes and even resorted to sticking my **bleep** pot of cold Greek yoghurt the other day. I haven’t really suffered too much in the mouth dept in previous cycles so can’t complain too much. Swilling with Difflam 2 hourly and improving today. Xxx
SusieB, I’m glad you are coping so far with the CT side effects. Thank goodness for paracetamol eh? I can’t even begin to count how many packets I’ve got through since last November. I can’t think of anything nicer than freshly picked runner beans. My Nan always grew runner beans and peas.
Daisydi, did I read you were still having problems with skin issues? I think the hot weather doesn’t help at all does it? I hope it’s not getting you down too much. Xxx
Hot and sunny down here in Somerset this morning🌡🌡☀️☀️☀️. Slapped on plenty of suntan lotion but won't be sitting in the sun too much. Bit achy this morning from CT so taken paracetamol, why suffer?
Nettienoo, hope the tongue/mouth issues clear up soon. Do ice cubes help at all? I've been wondering about Sandra and Veronica too.
Deano, have you got your post surgery follow up appointment tomorrow? Like Nettienoo I'm forgetting who's doing what when. At least I can start to blame chemo brain again🤔☹😩😔☹😃.
Can I ask a quick question? I've been reading about meds for post menopausal women to help support the bones and maybe reduce risk of bone cancer but my medics haven't mentioned them at all yet. Am I being too impatient as this may be discussed after chemo ect. For those of you involved when was the use of bisphosphonates - zoledronic acid or sodium clodronate - mentioned? I seem to meet the criteria on age and triple negative.
Have a lovely day, if you can, everyone and enjoy the good weather🌞. Storms tonight though⛈⚡🌩☹☹. Should be able to pick some home grown runner beans later for dinner tonight. Love to each and everyone of you❤❤❤
Morning all , Nettie I do hope you keep well. I have a fan too. It was so hot overnight. Didnt get below 25 in my bedroom. My poor dogs are black. Just cant imagine how hot they must feel but its too hot to walk to the beach and they dont travel so no sea swimming for them! Hopefully I will manage a dip in the sea today but it is so hot already. Ive left all the curtains and blinds drawn today to try and keep the house a bit cooler.
Seaside my nails look exactly like yours and a couple of my toenails are really brown. Looks horrible.
Have a good day everyone x
Morning lovelies, I’m suffering with the heat too here in Stafford. I spent most of the day in a shaded room with a fan on me, trying to keep my temp down. Every time I left the fan my temp went up. Probably the same today. Apart from a very ulcerated tongue/mouth making it hard to drink/talk/eat and the temp issue, I’m doing ok so far. I reckon 10 more days to stay infection free and then I will breathe easy and FEC will no longer be ruling my life. I hate it so much, I reckon hearing the word in the future will cause awful flashbacks.
So sorry the rads are making everyone feel so exhausted. That combined with the heat must be so hard for you all. You must all try and nap when you can.
Swimming in the sea sounds so amazing to me at the moment. I can’t think of anything nicer. Being well and truly landlocked here I will just have to make do with sitting with my feet in a bowl of cold water. 😂.
Apart from the rads and Edinbird’s appt tomorrow, what else have people going on this week? I feel someone else has something really important happening soon but can’t think who or what.
Has anyone heard anything at all from Sandra and Veronica? I know they haven’t been on the forum but I’m hoping someone has had contact somehow.
Implausible, my husband was in a meeting in Swindon yesterday. I told him to give you a wave.
Keep cool all. Up your water input today. It’s so easy to get dehydrated.
Love you lots. Xx
just had to pop by and say.......I'm with you on that!!!! The rads blew me away too, in fact I'm still feeling it....I only said this morning to hubby no matter how I sleep I always feel in a fug....last night I went to bed 9 pm and got up 7am and by some sheer miracle actually slept....today? Feel well and truly buggered! Oh boy!! Xx
I am literally just popping in to say I am utterly exhausted. I'm so shocked at the effects of the rads. No matter how much sleep I get, I still need a nap during the day and I feel completely drained most of the time. I've still got 9 sessions to go and they say the SEs peak during the 2 weeks after finishing. Can't imagine being any more tired than I already am.
Also a nails update. Mine are discoloured from the chemo as you will see in the photo. So I'm carrying on with dark polish until they look a bit healthier.
Hope you're all doing OK. I'm off to bed 😴😴😴
Night night xxx
I so want to go in the sea, I was told no swimming but I think they talked more about the pool, and if your skin was broken, surely under a wet suit if my skim is good I could try a dip after radio? Im going play it by ear.
It’s very close here, it was cloudy today, meant to be hot tomorrow.
Enjoy your dip in the sea tomorrow Daisydi.
Hope everyone one else is well. Xx
Not particularly hot here in Somerset but very still and cloudy🌫🌫🌫🌫🌫.
Daisydi, I'll add possible skin reactions to my list📄📄📄📄☺. Seriously though I need to be careful as I have had problems with eczema and currently have it on my palms due to sun cream.
All the talk of swimming. I can't go into a swimming pool due to the chlorine and I can't go into the sea due to my PICC line☹☹☹. Knowing my luck if I went for a paddle I'd get knocked over by a wave or something🌊🌊🌊🌊😅😅😅. Have a good evening everyone. xxxx
It hasn't got too hot here yet, but tomorrow the forecast says 32 degrees, wow! I think I shall mainly stay indoors 🙂 my house stays pretty cool thankfully as it is an old house with thick old walls.
I've never really been a sunshine fan. Old goth that I was growing up 🙂
As for swimming, my radiologist says that you can swim for the first couple of weeks of rads but they don't recommend it once your skin starts to get red/sore as treatment goes on as it can dry your skin out more and make things worse....
Annoyingly for me, however, my onco said no swimming for 6 weeks after last chemo. And I started rads just under 4 weeks after last chemo. So the 6 weeks overlapped my 2 ok weeks for swimming!
I'll be back in the pool September 1st ( 1 month after rads end so all skin sensitivities should be fully sorted) and I can't wait 🙂
Evening all,Edinbird it is so hot here. I cant bear it. Drove to a different beach today so I could have a paddle. My sister went right in. Do you think it would be ok to swim in the sea tomorrow? Rads start on Wed so its my last chance. By the way why cant we swim with rads? I can understand swimming pools but surely the sea could do no harm. Maybe I'll ask them. Have been waiting all day to take dogs out and have just managed it but it is still so so hot. I can feel my skin burning and thats with factor 50 which I have never used in my life and used to spend loads of time in Spain. Another gift from chemo. At least I got my scabby spotty legs in the sea. I cant remember whose posted what but I hope everyone is ok. Susie I didnt really get bad pains with the T but got headaches. I think my skin took most of the bashing from that drug. I still have new reactions coming out now and I thought it should have gone away by now. Speak later x
On the bus home from work. It was so hot today and tomorrow is only going to be worse! Driving tomorrow but as my air con is broken I’m not sure if it will be better or not... didn’t do much work and spent around an hour just talking to people I bumped into. I guess that’s what it will be every time I see people, then I’ll need to speak to them again when I get more news on Wednesday...
Helped a colleague with interview prep though so that was productive. Then when I finished I had a wander into the area near work that’s quite upmarket and went to the charity shops... could only tolerate so much in the heat so here I am sweating on the bus again. Feeling quite tired but that’s good so long as it cools enough to sleep. Hope it really cools by Wednesday or the surgeon is going to have some rather disgusting dressings to remove 😝
Sonia - that's a lot of steps - go you!!!! I am struggling just getting up my own stairs at home to bed these days 😄
Susie - glad that you are not too bad yet with side effects. I'll warn you that my T SEs didn't tend to kick in till day 4 or 5, so be prepared for things to possibly get a little tougher, but hopefully that won't happen for you.
Sorry for giving you flashbacks to your gremlin nightmares! That third drawing is just a normal garden ant, albeit blown up to giant size....
I had my first "boost" radiotherapy session this morning. It took a little longer than usual as they had to do some extra x rays. And then they had to call my surgeon in the middle of it all to double check something about the markers she had left in my boob to show where the tumour used to be. So I was lying there with my arms above my head for a good half an hour, which was a tad uncomfortable by the end. But it should be quicker tomorrow. (Only 4 more to go, yay)
Time to get to work now. yawn . Really not in the mood for it today! At least this is the last week where I will have to work all 5 days. Back to my 3 full days after this, instead of the 5 half days.
Hope everyone has a good Monday.
Well, day 3 after CT chemo and slight aches have just started to kick in. See where you were coming from Rosina on the suit of armour sinario. So popped a couple of paracetamol and see how it goes. Food tastes ok, although fresh coffee tastes more Columbian than Brazilian, which is the stronger of the two. Haven't had the dip from coming off the steroids yet either. 🤞🤞🤞I may escape that one. Yesterday's visit from sister-in-law yesterday went ok. The conversation flowed from bc to general stuff back and forth. She did come out with the classic 'Well it'll all be over by Xmas' to Paul, not me, and apparently he came straight back with 'No, that'll be just the start'. Hopefully you'll know what he means. Yesterday has tired me out a bit so intend to take it steady today.
Rosina, hope you're fully recovered after your hike. The problem with the British weather you often have to expect the unexpected🌡☀️🌝⛅⛈🌨🌧🌦☔🌂🌫.
Sonia, georgeous beach photos and well done on getting there too🏖🏖☺. Swimming in the sea will happen🏊♀️.
Implausible, The third collage postcard gets a bit creepy. The monster on the right is an exact replica of what I was seeing when I closed my eyes for the first few days after my FEC sessions. That, along with a few others, could be seen munching away at Gremlin🐉🐉🐍🐍🐉🐍🐲. Haven't seen anything similar with CT yet.
Have a good day everyone xxxxxxx
Well I’m feeling really pleased with myself today, we went up to out caravan to sort out for our holiday, and I walked up from the toilet block without breathing out my bottom.
I then went down the beach with the kids and made it back up the steps without collapsing.
I really wanted to go in for a swim, hopefully it won’t be long, just paddled today.
I'm on my regular evening walk and have reached my second bench stop (can't do it all without sitting down breaks yet 😕 and to think in the early stages of chemo I could do this whole walk twice without a single stop!)
It's the local fishing hole but nobody ever seems to fish here any more, I guess the kids today aren't into it like they used to be. Or maybe they caught all the fish!
Sonia - gotcha - I guess your doc has his reasons for the wait. I know there is sometimes a long gap - my pal who had the mastectomy last Monday has been told she has to wait 1 year before they can even up her other boob. Not sure why. She was a bit disappointed about that .
Also I'm well impressed that you were able to stay up past midnight last night!!! I feel like I'm up way past bedtime at 9pm! 🙂
I'm so tired all the time now it isn't funny. And I think my family are very bored of me keeping apologising for it.
Rosina I'm still in utter awe of you and that insane hike 🙂 so glad for you that you were able to complete it. Also it sounds like you have made a firm new friendship which is great.
MBJ hope you survived Primarni 🙂
Edinbird sorry you still didn't sleep well last night 😞 I reckon you need to get yourself back into a good sleeping routine however you can, and you can worry about weaning yourself off the sleeping tabs later!
Although as you say, being back at work will probably wear you out enough to help with that.
Other than this walk I haven't done much today other than looking at potential cars in the Autotrader with now 17 year old son (first driving lesson tomorrow!), and starting work on 3 new collage postcards, monsters etc. just sketched in for now:
Catch you all again tomorrow
I didn’t take my sunglasses with me because sun was not on the menu 🤪
I also didn’t take my baseball cap, ditto above.
I had a raincoat and 4 spare pairs of socks packed in sandwich bags ( for waterproofing them) plus a spare pair of knickers ( Liz’s idea , which after my terrible sneeze/bladder fiasco at home seemed appropriate).
Apart from a sudden, short , sharp shower that was it ( enough to get rain jacket out and then tie it to my rucksack).
I bet if I had packed for sun it would have poured down 😂
Have had a lovely bath and nap .
H1 got over his hump by Friday afternoon. 🤡
It really has been a good weekend.
ps my friend Liz is a teacher too. Great sense of humour.
No better sleep 😞 although I actually slept a few hours yesterday afternoon. I didn’t want to take tablets to try and sleep every single day so I thought it best to not at the weekend when I can rest more. Means the weekend is pretty rubbish though! Maybe I’ll be more tired in a good way from work so I’ll sleep better in the week (until I have to be off again).
Need to get up anyway not sit in bed. Husband has gone to an American Football tournament so I could go out for a walk whilst he’s away. I hope you have a good rest Rosina you deserve it! xx
Very well done on your hike, you are one awesome woman.
Were you not allowed to were sunglasses to protect your eyes in the sun?
I think you deserve a rest today.
I have to face Primark with my 15 year old granddaughter help!!
Well done Rosina for completing your walk, the weather looked lovely. Hope you enjoyed breakfast and your eyes have recovered now.
Marilyn your hair looks fab.
Daisy, No onco type test for me either.
Sarah, I’m am waiting to have my ovaries removed and reconstruction, after disaster with infection with the implant last time. They would have tried again but I wanted to get on with the treatment which they advised was a wise choice.
consultant oncologist said I have to wait 6 months for body to recover from chemo and radiotherapy for reconstruction (which I know isn’t always the case from you ladies) and have to wait 6 months to check I can cope with the steroids which stop ovaries producing before taking them out.
Gives me more time to
loose weight but again I’ll need more time off work, so not happy about that, I was also promised that all treatment would be done and dusted in 12 months. 😞
Ocean your pictures are fab once again, always make me smile, they just feel tranquil.
Susie, i didn’t take anything to preempt the pains but had pain killer on the side and took them as soon as they started, I felt why suffer.
Hope your not In too much pain and enjoy your visitors.
Edinbird, hope you had a better sleep.
Sarah, your day yesterday looked lush, I was dragged round dive and boat shops, I had to
come home for a little nap as we had a 21st birthday party to go too. Good job I did as we didn't leave till 12.30am. I was driver so no wait for taxi
which was nice.
Trixielady, I hope you’ve had a good weekend, the rain made another appearance over night after hubby saying it wouldn’t and my washing was
MJB, hope your enjoying having your family home. 💕
Nettinoo, you still keeping that temperature at bay,
Seaside Sar, How are you coping with your tiredness, mine has definitely hit this weekend.
hope everyone one else is enjoying the weekend xx
Well done on completing the hike. The weather looked fab🌞🌞, glad the storms never occured🌩🌩. Hope your eyes recover soon. As for the Prosecco, you totally deserved that treat🍾🍾🍾🥂. xx
It was a fabulous walking day yesterday. I had blood shot eyes by the end of it ( sun in our faces all the way for the last part , and no sunglasses, eyebrows or eyelashes 🙃).
I am looking forward to breakfast!!! Couldn’t face dinner after the 4 jelly babies I had 1 mile before the end.
I did sip my glass of Prosecco though 🤗
Hi Maryln it sucks doesnt it? I know it wont change anything but I would just like to know that this chemo hell was worth doing and not just a box ticking exercise. x
Daisy....I didn't get an onco type test either, and I think it was more of a financial matter....my nodes were clear and I had clear margins.......I must admit, I did feel cheated not having one xxx
Hi, very quickly Sarah thanks for that about the onco type test. My lymph nodes were always thought to be normal and nothing showed up on scans. I only had 1 positive out of 4 before they did the clearance so I think I should have qualified too. I really think it was a financial decision unless as I said before they know more than I do x