Daisy, I tried a scarf on Sunday, I was so hot, it make me really uncomfortable.
A rash vest usually goes under a wetsuit, but they have a uva factor in some, just been checking them out on mountain warehouse, they have some on sale, I saw a really nice roxy one but it did have the roll neck, they are very fitted but I think It might be my best bet on the beach, I’ve bought a small sun umbrella too, roll on next year XX
Well done Sonia for making it into the sea🌊🌊🏖☺. You look as though you enjoyed the experience. Oh to be without my PICC line☹xxx
Sonia what's a rash vest and where do I get one. Im having real trouble trying to keep my neck out of the sun. A scarf was mentioned but I just cant bear it with the heat
Well I had another med review after radiotherapy today and asked about sea swimming, she said I could try it, I said I would have wet suit, rash vest and will shower as soon as I leave water.
Never enjoyed the water so much, jumping waves, well being drowned by waves more like it 😂😂
No soreness yet, showered and dreamed up.
Also thought my rash vest is good at protecting my neck area from the sun, so am going to get another one, as not sure the sun factor hasn’t been worn out in this one. I’ve only got 3 more rads to go 🎉🎉
hope everyone one else is doing okay 😘😘😘
Nettie such a good look but needs must hey?
Just returned from my no 2 rads. Bit quicker today and I took painkillers before I went in. Had a review also. Have got them all discussing about whether to go in the sea or not. They agreed I could go in as long as moisturised well beforehand kept my skin covered up and showered straight after as the sea water does dry your skin out. Cant be bothered to go today as its too hot. Yesterday got back and we had a power cut and today got back put the fan on and it fused the whole house but I thought it was another power cut so now grumpy as too hot and have no fan. So looking forward to some cooler weather.
Hope everyone is coping ok in this hot weather. Not the best time to be having rads!
Love to all x
I am still getting issues too Trixielady, mainly under my arm not exactly my arm pit but more where the bra fits sort of extension of the boob area. My reconstructed breast often feels swollen too. I must say it's not the most comfortable of feelings. I think mine must be down to some lymphodema now as my last surgery was December. I am exercising and dry brushing daily, and my friend who is a qualified reflexologist is giving me four days of intensive treatment just for lymphatic drainage. After that I will have weekly sessions. Also thinking of doing aqua aerobics and possibly Tai Chi as I have read that it's really good. Can't do stuff like yoga or pilates as I have had a knee replacement and I am not allowed to kneel on it.
Deano your underarm must be so uncomfortable why don't you try them again and say how much discomfort you are in. I had a drain too but mine blocked after about three days so had to come out. Hope you feel better soon.
I have escaped the workmen and the dust outside my house. Will take some pictures of the progress when I get home. X
Hot and sunny again🌞. I'm feeling much better today. I have a couple of aches and pains in my back and legs but not too bad. A couple of paracetamol soon sorted it. Generally feel better than yesterday, may even take a little walk later so long as it's not too hot.
Edinbird, I'm glad to hear that your surgeon has come up with the best case scenario. It's such a shame that she made you feel bad about the questions you asked. No matter what she thought about them they were obviously important to you. I must admit when I go for appointments I go armed with a piece of paper with trigger words on so if something isn't covered I'll ask. Never done that before. As for the armpit scar I was shocked when I first saw it as it was about 3 inches (8cm) long, then logic took hold and in reality when the arm is relaxed it's less than 2 inches (4-5cm) long and well hidden. My scar, although still red is relatively flat and I'm currently happily wearing a sleeveless top.
Daisydi, hope you have a better rads day today. I wonder if I'll have boosters too as I was lumpectomy and full ANC. On the plus side my rads won't be until Oct/Nov so should be much cooler weather.
Have a good day everyone. xxxx
Glad to hear you managed to get away for a while☺, not such good news about your underarm swelling☹. I can't understand why your nurse was reluctant to carry on draining the site. Where I am it's a case of if it's too uncomfortable give us a call and we'll sort it. They are happy to keep going until your body sorts out what it needs to do. It seems as though each hospital, surgeon, oncologist, etc have their own way if doing things and sometimes it's sheer luck that we are happy with the path they set us on➡️⬆️⬅️⬅️. Hope you receive the news you are hoping for today. Let us know when you feel ready. xx
Deano I'm pleased you enjoyed your few days away where is Skeg Vegas?? I had a drain in after my lymph node clearance for nearly two weeks can't understand why you don't or why the nurse didn't want to drain it can't they even massage the area so it re routes?? Its really important to try and continue with the exercises although the area is painful I'm 7 months down the line and still having issues so please be careful and push for the right help. Xx
Well I made it for a few days away in our trailer tent to chapel st Leonard’s near skeg Vegas!!! Back home tomorrow as I have my results from op. My armpit keeps filling up to the size of a grapefruit it’s very sore/ painful/uncomfortable I’ve had it drained twice and they said they won’t keep doing it as my arm pit won’t get better as my body has to deal with it.....don’t know how nurse very snotty with me as they didn’t want to drain it and I can hardly move it to do the excercises but I’m moving it in other ways I’m not looking forward to the roads but can’t see that happening anytime soon with this arm.
For those in T sorry your all getting side effects I’m just coming out if it now 6 wks in legs are much better still stiff but haviing surgical stockings helped my legs get better maybe you lot can ask for them if your back
Everyone on rads I’ve heard you talk about aveeno and I’ll deffo buy some if it’s any good keep the top tips coming advantages if short hair in hot weather is better small things grab the positives ladies I’ve also started on iron tabs and biotin 5000 for my hair last 3 weeks and my hair is growing back very quick
Anyway take care and keep updating each other xx❤️❤️
Thats sort of good news Edinbird. At least you now have a plan of action.
I had my first rads today. Took ages. Was laying on the table for about 45 mins and my shoulders and neck were killing me. Turns out I am having boosters so I will have 20 sessions. It was awful in this heat and when I got back took my clothes off and sat in front on the fan we had a power cut and it has only just come on. Not looking forward to tomorrow as it will be even hotter. One saving grace is that the car is air conditioned and so is the unit but it was like walking into an oven when I came out. Will have to take some pain killers tomorrow. Oh and I think I can go in the sea unless my skin gets sore. My knee is too painful to get to my beach though! I used Aloe Vera Gel straight after the session and then Aveeno when I got home. She actually said I could use Aveeno before the treatment if I wanted. Oh and I have to wear a scarf in the sun! Yippeedoo!
PS the skin on my boob is already burning hot. Is this normal so quickly???? The other boob is cool so its not the weather
So the surgeons plans are the best case I was hoping for - a clearance and a scrape round the lump hole for want of a better description! She’s a bit blunt and a little patronising and I felt bad asking the questions I did. The lump turned out to be 19mm and she removed 34mm. The margins are above and below with below the one where there is DCIS so further down into the fuller part of the boob which I guess is the best thing it could be. Op is on 8th and I will need to stay overnight because I’ll have a drain in. It’ll be a bigger scar across my armpit and I’ll need longer to recover so need to see what the doctor signs off on. But that might be me off work until September 😬
Rosina, definitely the Jurassic Coast. Not that I'm biased or anything😉, but it is supposed to be a brilliant walk. Interesting fact about babies and I expect many young children having to have GA when having rads. Quite a sobering thought. An ice cream after rads🍦yummy☺. The rate I'm going it'll be mince pies and mulled cider on the way home😃😃🤣xx
Lovely photo of the lake Seasidesar.
How many more rads have you got left.
I am on a count down. 18 more to go. Decided to bus it today. Much better idea as I can move into the shaded seat as required.
Also clocked up some steps walking to the bus stop and back from the town centre (with an ice cream in hand).
Early morning appointment tomorrow (which is what I wanted) the car yesterday was like an oven after sitting in the car park.
Rads are definitely much easier than chemo. Although chatting with the radiologist yesterday she told me that when they have to treat babies with radiotherapy they have to put them under general anaesthetic. I had never, ever thought of this .
I also showed my Thames Hike medal to the Macmillan cancer bods as I went to hang out there for 45 minutes ( bus timetables meant with arriving an hour early or 10 minutes late). Thinking of signing up for another one next year ( South Coast or Jurassic Coast).
Hang in there everyone especially those going through chemotherapy.
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