Morning lovely ladies
Nettienoo you sound very much like me haha once i get a food idea there's no stopping me, I've put about a stone on over chemo but luckily about the moment its staying level but now I've started letrozole I'll have to wait and see
Well done to England!!
I'm more than a bit lost with who is doing what at the moment don't seem able to take it on board when i read back over, but my thoughts are with you all.
The weather is looking lovely here in the North East at the moment so fingers crossed, hopefully you'll all have a good day xx
Morning beauties, just popping in to say...
wow Rosina H1’s allotment looks amazing. What is growing at the moment?
Imp... thanks for the lovely, newsy update and a much needed smile this morning.
Roids had me awake from 1.30am until 6am the. Went back to sleep until 7 when my husband woke me with a cup of tea. I desperately wanted one in the night and food!!!!! I knew there was a bag of jelly babies in the cupboard (for grandsons) and I couldn’t stop thinking about them all barrying night. I should have got up and just gone and scoffed them down but my son is leaving to work on a survey boat in the Gulf of Mexico today for 6 weeks and has a horrendous 3 stage flight later so I was desperate not to disturb him. My husband has just pointed out that my son has hours of nothing else to do but sleep all he wants coming. Doh!
Anyway (look away Rosina 😂) I’m off downstairs to grab them for breakfast. 🐷🐷🐷. Your fantastic 81bs loss Implausible may end up on my midriff. Yesterday was last roids though so there is hope. Btw, don’t start loitering around gym doorways Imp as we will all know what you are after now! 😉😊 xx
thanks for another interesting and amusingly written post 🤗
Yes, where is Ocean21???
I went for a stroll yesterday around a National Trust Park that I hadn’t been to in 6/7 years lured by the idea of water lilies. Nobody cared to join me so I went by myself.
The hike is this Saturday and the weather forecast for Windsor is clouds with thunder and lightning ( but no rain) 🤪😂 which is making me giggle just thinking about it. The lady I hiked round London with said to me that if rain was due , she would do the 26 miles on an alternative date by herself . Which I found highly amusing.
Anyway we are supposed to go easy this week ( they sent us a training plan but I have never looked at it) .
I am getting a pedicure this morning ( perhaps they can gel down the loosening nail 🤭) then tomorrow and Wednesday I plan to go into work to find out about my new class.
With rads , I have also read that it’s important to stay hydrated and eat lots of fruit and vegetables ( antioxidant and vitamin boosting).
Thankfully I can raid H1s allotment:
The jungle allotment, every thing H1 plants just grows 🤭
Hope you have all had as good a weekend as possible and have been able to enjoy the nice weather.
That is assuming you've all had the same sunshine we've had down here. Edinbird did the rain stop up at your end?
My last recap post started with Rosina's little accident part 1, and this time the first thing I read is volume 2, the trampoline edition
Susie B when you said you'd had a problem with pee urgency in Iceland, at first I thought you meant the frozen food shop not the country But then you mentioned the sound of waterfalls, which made me think that your branch of Iceland must be a lot fancier than mine
Edinbird, really sorry you are having a tough time I wish you could find the magic formula that would help you get a decent night's kip.
Who is the book signing on Tuesday?
MBJ thanks for the link re the exercises, found them, I'll start them tomorrow as they look a little more thorough than the ones I've been doing.
Susie I live just down the road from Fairford airbase where they have a big air show every July, so have had a Vulcan fly directly over my house a few times, as you said, they make a bit of a racket!!
Hope that your sister in law's visit went well.
Remember when my sister came to visit me a while back and criticised my (in her eyes) obscenely messy house? Well my cousin rang today to see how I am, and she said that my sister called her and said I need help cleaning the house (the cheek!!) and they are both (sister and cousin) going to visit me soon to help. Not if I can bloody help it they won't!!! Sigh.
And honestly if you want a tattoo, go for it. A small one barely hurts and is over in no time. It definitely will seem like nothing compared to everything you've been through already this year!
Thanks for the exercise links Rosina
Nettie, hope you are feeling a little better? I was almost jealous reading about your roided up state last night, I really miss the energy from the steroids! I looked forward to them every cycle. Could do with a little energy boost right now for sure!
I got my Aveeno tub online too. Glad you've found it soothing. It definitely seems to have kept the worst effects of the rads at bay for me so far.
And too right we will all still be in touch years down the road. You lot are stuck with me now. Like it or lump it
Sorry to hear about your departing toenail Rosina apparently we can lose nails up to 12 weeks post chemo! Hopefully it will just be that one nail for you.
Hi Daisydi. I had a s7 Edge before the s9 I currently have , they are nice phones. Enjoy!
And yes I got my Aveeno from Amazon. As for the permanent marker on the boobies, I scrubbed mine off with make up remover wipes. Came off fairly easily.
Rosina the original art for my orca tattoo is by a Vancouver based Haida artist called Bill Reid. The Haida are indigenous along that whole stretch of Pacific North West coastline all the way down to Seattle and Portland, so yes your pal in Seattle would be very familiar with the art style. The PNW is my favourite corner of the world.
I have a print of the artwork on my bedroom wall, I'm looking up at it now (no it isn't wonky! I'm wonky )
(It all looks red as the sunlight is bright outside and my closed bedroom curtains are a terracotta colour )
Marlyn I'd not heard about the hormone treatment making people depressed :/ I hope that doesn't happen to any of us. Although after the year we've had, we have all taken at least a little bashing to our mental state I think!
Glad you are enjoying your aircon. Sounds lovely! I don't even have a fan and my bedroom is a little toasty this evening. Should be ok when the sun goes to bed though.
Edinbird really sorry that you are struggling so much post surgery To read that you would prefer to have more chemo really drives it home. I would honestly have 100 surgeries in the place of a drop more chemo!
Hope you start to heal up quicker over the next few days, I guess it is fairly early days still.
I'm with the other ladies that it is best to keep your pain relief topped up regularly to stop things building up. My surgeon told me to take paracetamol every 4 hours for the first week. Although I think I stopped after 4 or 5 days.
MBJ glad you had a good day with the rock choir, but please train your hubby up on taking better photos so we can actually see you!
I only ever wore my wig once way back in Feb/March and found it waaaay too hot and itchy even then (could only stand it for a couple of hours), so I can imagine it must be unbearable in the summer! Totally don't blame you for ditching it.
Lovely photo of the waterlilies Rosina.
Makes me think of our lovely Ocean .... hope all is ok over there in France x
That's me caught up, now I can share my super exciting news:
I've got new hair growing!!!!! It's barely perceptible at the moment, 1mm long if that, and only at the back and sides of my head so far, not yet on the crown, but it has been independently verified by my other half and 2 teenagers I am so relieved you wouldn't believe!!!! The longer I went with no sign of new hair the more I was convinced that my onco had cursed me with his repeated insistence that "hair loss might be permanent". I'm so so happy!!!
So I now have about 1cm regrowth of the hair that the cold cap saved (which is all over my head but patchy and sparse), and then in between those hairs, little tiny baby hairs filling in the gaps
I don't yet feel confident to walk around bare headed as I still look a tad like a crazy white nationalist with it being so short.... but soon I can ditch the hats I did flash my head at a few friends at the comic book event I went to yesterday in Bath, though, and they all got a kick out of stroking my little stubbly head as it is so soft!
Talking of the comic event I went to, some of you might have seen this already on Facebook, but this really made me laugh yesterday. One of the exhibiting artists specialises in drawing comical death portraits, and he had this ready for me when I got there He tried to give it to me as a gift but I insisted on paying for it, he is a starving artist after all.
Other good news, I've now lost 8lb of the almost 3 stone I put on during chemo. Hooray.
As for side effects round up, I'm still finding it difficult to walk far at all, at least without very regular rest stops, my legs are achey and I get worn out so quickly. And you definitely don't want to be stuck behind me going up a flight of stairs, as I am so slow like a little old lady!
But other than that I'm ok. And I'm hoping that the lethargy and slow walking pace etc (all of which I blame on the Docetaxel/T) will eventually start to improve once the rads are behind me.
Th-th-th-that's all, folks!
Another weekend ends and a new week begins.
Love to all
This is the exact video I use for the dry brushing. I really think that and the exercise is helping. The SLD does not seem to much to be honest. X
re. Your comment about a specific way of dry brushing if you have had lymph nodes removed.
I just did my research again ( yup it helps)
and found this :
so thanks for correcting me ( as I was pretty much brushing from my legs up and from my hands up , so I will improve my technique).
Re. Headcoverings I am now drooling over silk scarves:
Photo from walk today:
Thinking of joining the Ramblers 🤪
Marie, I’m joining you in the hat/wig off dept. It’s too muggy and I get overheated. I will definitely be baring all for a bit if this weather keeps up when I’m out and about again. I’m past caring now. X
Yes, Edinbird, agree with everyone about regular pain relief. You shouldn’t have to suffer this much. When I fractured my shoulder last year and had to have it plated, I was in agony after op but didn’t do well on codeine or morphine after a couple or days so doc told me to use paracetamol and ibuprofen interspersed so I didn’t go more than two hours without pain relief. Even if I felt ok. It did work. Fingers crossed you get some respite soon honey as I really feel for you. Xxxx
I have been singing in the music festival in Neath our nearest town. I has been a great day. But I was too warm in my wig so I have decided that's it no more, grey very short hair here I come. Here is a picture of us. My husband was in charge of the camera I am nowhere to be seen! I am actually on the very far right of the picture second row behind someone's head.
Well here goes see what I remember.
Edinbird I think you need more regular pain relief as suggested. Co codamol and ibuprofen in between doses. Or just paracetamol and ibuprofen in between doses. Hope you feel better soon.
Rowena with the dry brushing there is a specific one to follow if you have had lymph nodes removed. It's meant to encourage the lymph to other areas of drainage.
Nettienoo sorry I did not realise you had had surgery before, you probably did say right at the start but it's hard to remember with everything going on. I have not had radiotherapy either as I had a mastectomy and ANC. My choice I could have had a lumpectomy but I have really sensitive skin (surprise, surprise) so wanted to avoid it if possible.
I hope everyone else is enjoying a nice sunny afternoon x
Edinbird I dont want chemo ever ever ever ever again. I think with the pain relief you have to take it regularly even if you are not in pain to keep it topped up. I just took paracetomol every 4 hours, pain or not and really didnt suffer. Also took ibruprofen when required but always kept up with the paracetomol and this is from someone who never took tablets!
PS couldn't take codeine as it makes you constipated!
Morning, just! So experiment number who know what went like this - two codeine, one of mine one of husband’s. Arm/pit was really sore yesterday had a heat pack on it and everything. I was so hot in bed all night but the painkillers made me fuzzy, it was easier to get comfy but still needed a bit of manually moving about so I was awake more than I wanted. Ended up with bad boob out of the bra and good boob in! Woke up after husband had gone off to training and still felt tired so was on my phone and then went back to sleep, he was back early and expected me to be up! So the painkillers were good but didn’t help the feeling hot, so I probably do need the combination with the sleeping pills at the moment.
My nails are a little stripy but more with ridges, yours don’t look that way Rosina. They’ve grown really well they don’t seem like they’re flaky anymore but the white part is quite yellow underneath and my skin seems stuck to them, normally if I have a shower I can just run tweezers underneath and clean any dead skin away but it’s stuck fast! Maybe I need to soak them.
My scalp is 100% back to normal... my hair is getting greasy super quick like it used to, to think I could wash once a week with chemo! Still using the conditioner since I’m still losing some hair but it’s definitely slowed down. Less came out last wash - next one scheduled for tomorrow! Since I’m going nowhere it can be as greasy as it likes 😝
I know everyone keeps saying they’d never want chemo again - at the moment I’d rather have that than the surgery and its after effects! I can’t drive, it’s uncomfortable and hurts, I can’t lie down how I want, I can’t wear what I want, I can’t move properly. T was pretty horrible for a few days each time but I’d happily take more FEC! Not that it did my lump that much good. If I have to have another op I’ll be really annoyed. Appreciate the chemo has caused my sleep issues and that on top of the surgery is making it worse, but at least with the chemo the worst days seemed to pass and there were more good than bad. The discomfort from the surgery seems to be getting worse and has lasted longer so I’m firmly on the chemo side right now!
Better get up now. I could just doze here all day but I need to take my heart pills and move my stupid arm. And drink!
Just popping in to catch up with the posts. Thanks for the links regarding lymphodeama prevention excercises and massage techniques. 5 days since my last lymphatic draining and no signs of growing another tennis ball yet but the area is a little lumpy.
Have a good day everyone xxxxxxx
chemo made me a bit flushy but herceptin stepped it up a gear and now with anastrozole I'm virtually a walking furnace! My air con unit has been a god send, I also have the fan on all night and when I'm on my travels I have my " Spanish fan" . I've also noticed the bone pain more since anastrozole but it's manageable ( at the mo) if this is "all" I'm getting I shall be very grateful as iv been reading some women get very depressed on these wee things. I also take it in the evening, as suggested by my nurse....
rosina....your nails! I could be looking at my own....odd isn't it?
Netti, yes, thank goodness you were getting the yearly mammograms...doesn't bare thinking of! Hope you get through the day as best you can.....I loved killing eve....
im off to Tesco ( seem to live there at the mo) love you all to infinity and beyond xxxxxx
Ah thanks Rosina, my stupid fuddled head again..... Imp it’s you I need to thank for the Aveeno tub post. Looking forward to another slathering when I can finally get my lazy butt out of bed and have a shower. Also great tattoo. Brave though, mine is much smaller and I had to bite the back of the chair I was straddled on throughout. It was 20 years ago. I’ve wanted another one since but it would have to be quick and minute. 😂
Daisydi, just read about your faff with transport issues. What an absolute pain. The main reason I chose the place where I had my chemo was better parking as the main hospital in Wolverhampton is an utter pain (even though the small unit didn’t do cold capping). I always get dropped off when I have appts there and my lift then spends about half an hour trying to park. It makes me feel so bad and it makes visiting me in hospital there really stressful for people. Xx
Hi Marie, thank you. I got back to sleep at 5 and slept until gone 8. Unfortunately, it wasn’t a typo as I had DCIS 5 years ago, sorted with a lumpectomy and small implant. I was told I didn’t need any further treatment at the time, but unfortunately there must have been something left to grow into a tumour. 5 years on same boob but thankfully I was still having yearly mammograms so it was caught before it got too big.
I’m slightly worried that I am not having rads ( must be mad I know) but I suppose I’ve got to carry on trusting the professionals who say there is nowhere to target as full mastectomy this time and lymph nodes clear.
Going to try and stay positive moving forward.
Much love. Xxxx
Morning Daisydi, glad to hear that you have some solution for travelling to hospital and back. All my nails are have stripes. Will tape my toenail for the hike 😬
I have found this YouTube clip for lymphatic drain massage this morning, always good to add tools to the prevention kit.
MBJ I have a body brush too. It’s great. I don’t use it daily but definitely x3 a week. I brush up ,
towards the heart.
Implausible my friend in Seattle sent me a birthday card with that Native American whale design - just like your tattoo- must have taken ages but it is striking. Not for me though I don’t do needles except the WBC ones (and they are done).
Anything else??? That’s it for now 💕
Rosina all my finger nails have a line going across the middle but I dont think they will come off. They just look really strange as below the line looks normal and above the line is yellow/white. My toenails on the other hand look awful and my big toes especially are still very sore. I think I will tape them down if they show signs of falling off! They were bruised like someone has stamped on them
Morning all, hope everyone is having a good weekend.
Sarah that tattoo! No way! My new phone is a Samsung S7 Edge. I know its not the latest but I am not on a contract and have to buy my phone and expect them to last a while. The latest version is about £800 so that is a definite no no! My sister has this one and so has one of my friends and they both really like it and it has a really good camera. I might even be able to post some pics when I work out how to use it properly. I will definitely get that tub of Aveeno although I have not seen it in the shops. Did you get it on line. Hope your skin continues to hold out for you. Before they did my permanent tattoos they drew all over me with permanent markers and I cant get if off. Any suggestions? Take it easy at work. Your health is more important!
I have a plan for the journey to r/t. If parking is a major problem I have found a park and ride which is only 10 minutes from the hospital. I do have to drive further away down the A47 to get there though so I will see what happens. At least its an option and they run every 15 mins but seems a bit of a faff when I am hopefully not going to be there that long. My first session is on 24th July so 3 that week, every day for the next 2 weeks and then the last 2. Will cost a fortune in petrol!
Nettie hope you are not feeling too bad. At least your skin is soft. Are you not having r/t?
Rosina thank you for all the links. You are super efficient!
Edinbird you take it easy as well and hope you're feeling a bit better today.
Maryln are the hot flushes caused by the Anastrazole to you think? If so will need to prepare myself.
Hope everyone else is ok.
Speak to you all later x
That was Implausible that posted the pic of the Aveeno cream in a tub.
Good to know that you can get it on Amazon.
The toenail on my big toe ( left) is coming off, just noticed this morning during my stretches. It had looked a bit purplish down the inner left side. I am sure it’s due to chemotherapy as I don’t remember bashing it anywhere .
I am managing 7 hours of sleep every night and I have a nap in the afternoons on most days.
Hope everyone has a relaxing Sunday.
I hope you eventually got some sleep. Yes you have had a tough time with all your side effects. Let's hope they will be over soon.
I really hope what you wrote about a 3rd reoccurrence is a typo!!! Not sure what's been happening if it's not. Do you expect to be on one of the hormone therapies. I f so I am coping well with Letrozole. Hope you have a better day today xx
Yes those are my exercises + a few more I found on an American site that involve 🐔 wing arm exercises 😀. Gosh the yoga lady is flexible I don't think my arms would do that. Good idea using a scarf though. I have got a stress ball and a lovely shaped handle dry body brush.
Have a good day x
Hi all, bit wired on the old roids tonight. Been awake since 1.30am and now 4am. Binge watching Killing Eve so time passing ok. Just don’t feel at all sleepy.
Rosina, thanks so much for posting about the tub of Aveeno. Although, I’m not having rads, I thought I’d try some for my ultra dry, sore skin everywhere. Got it via Amazon Prime yesterday morning, and slathered it on. Bliss.
SusieB I’m happy to hear that you are trying to get into the holiday spirit in your garden. It does sound rather nice.
I’ve decided that my body has just decided it’s wants no more toxins, roids, wbc injections, antibiotics or even pain relief. I seem to be reacting to everything badly. Thank goodness this is the last one. I’m with you other ladies who think “never, never again” as far as chemo. I am hoping whatever carry on treatment I get put on will stop a 3rd reoccurrence until more targeted and less aggressive bc treatments are available. Even then, I may just take my chances. Who knows how we will all feel about everything that has gone on in 5/10 years time. I hope will will all still be in touch and have met more than once by then.
Love you all. Xxxx
Re, arm exercises I do all of these ( apart from the Nordic Walking)
This is an American site. No I don’t wear a compression sleeve ( don’t require one and you only need one if you do develop symptoms).
I think this is what you used
I do this with a scarf :
Can't believe the skies have finally cleared🌫🌫☁️🌤⛅☀️☀️ this evening. Bit of a shame as RNSA Yeovilton had their air day today so displays would have been limited to what they could do as the cloud was pretty low. We've been a few times, the last was going to see the Vulcan fly as our son had heard all about them, seen them on static displays but never seen or heard how noisy they were. Quite an experience. Hubby and me are having a bit of 'us' time today and part of tomorrow (empty house)😊😙💑 as Chris has gone down to the coast today, then staying with his mate overnight, then they're off to Taunton with a larger group to do the 10k Race for Life. My sister- in- law is popping in tomorrow afternoon on their way back from an antiques fair down this way. We haven't seen her since we told her about my bc. As I think I've mentioned before we didn't tell anybody until after Xmas about this Barrying bc. Preparing myself for the inevitable questions, you all know what I'm talking about.
MBJ, happy to hear that the exercises appear to be helping. I may start doing some myself, along with the ANC excercises, as that should give me more incentive to get more active as did quite a bit before I got my bc diagnosis🚶♀️🚶♀️🏃♀️🏃♀️💃💃🚴♀️🚴♀️. Then it all stopped☹☹.
Implausible, that's some piece of artwork you've got there. I would love to have a butterfly or something on the back of my right shoulder but am too chicken to get it done. Maybe after this is all over I'll think about it. Let's face it, if I can do chemo, undergo surgery and have rads I can manage a small, discreet tattoo🦋🌸?
I hope you're ok Trixielady, Sandra and Veronica, and Ocean 21, we haven't heard from you for a while. Deano I guess you're taking it easy after your surgery. Let us know how things are going when you feel able. I think everybody else has been on here in the last day or so. Appoglies I've forgotten anyone.
Hubby and me about to have drinks🍷🍹🍹🥃🥂 in the summerhouse since we're supposed to be on our holidays🌍🏖🌡🌓🌞. Have a good evening xxx
Yes girls I do think it's better since doing the exercises. I have also been doing a dry brushing.
I will try to set up a link but not sure if I am doing it right. www.cancerresearchuk.org
It seems to work but it's a bit complicated to find. I think it would be easier if you just searched for exercise, positioning and lymphodema it came up as one of my searches and took me straight to the page instead of having to go through about 7 stages to find it from the link above.
Edinbird, I was told not to drive for two weeks, then do short journeys to start with. From what I can remember you're a lefty like me so make sure you can change gear, use the handbrake and steer comfortably before you set off anywhere. On the plus side driving does provide a bit of arm exercise💪💪💪. I've just started to incorporate some arm exercises from a Rosemary Conley DVD to mix things up a bit and doing some leg toning exercises at the same time. Keep an eye on things if your arm is sore. The only pain I had was if I turned over in the night onto my left side. 4 weeks on from surgery and I've finally got rid of the last bit of tightness I felt when 'walking' my arms up the wall. Bit painful in the process but glad I persevered☺. Hopefully you'll make it to the book signing📚🖋🖋.
Thanks Rosina for the information regarding the sesame oil. I'll start swishing on Saturday morning. And as for trampolining with a full bladder, a definite no,no me thinks🤣🤣🤣. Just imagining the scene is making me laugh. On my part, Iceland is where I've had a problem in the wee department. Must have been a mix of the cooler weather and the sound of all those waterfalls, although I didn't have that problem on 2 previous visits so maybe it's my age. Anyway I made sure I took advantage of the loos🚺🚺🚺🚺🚽🚽🚽 whenever we stopped after that little incident. Don't intend to become a Tenna lady just yet.
Implausible stand your ground at work and learn to say the word 'no', politely of course.
Marlyn hope the AC cools you down.
MJB, let us know if the exercises are showing any signs of heading off the lymphodeama.
Hope everybody else is ok. Take care Susie B xxxxx
Slept awful the bra was actually fine but I was so hot and my arm was really sore so I struggled to get comfortable. Stayed in bed until about half an hour ago, got up ate breakfast and now I could sleep again! Need to do my exercises. And this is without work... maybe it will mean I can sleep if I’ll be worn out! Getting apprehensive about driving too, I think I’ll be ok but my arm is so much worse today. At least it’s just numb and sore and doesn’t seem swollen like yours Susie. I’m going into town for a book signing on Tuesday so that will be a test to see how I go being out for longer and on the bus.
Right time to exercise 💪🏻
this is very powerful and worth listening to :
Hope everyone has a good day 🌼
PS. I rarely have accidents as the one described recently although I know that trampolining with a full bladder is a no no (and this is going back at least 3 years, haven’t been on a trampoline since ).
Hi Sarah xx
Not sleepy just now and not wasting sleeping pills on a weekend.
New job starts 9th September but I imagine I’ll be in rads by then fingers crossed for no more surgery... so I’m not sure what I’ll do really. Wait for the dates and then come up with something... I definitely won’t be travelling any days during that, if working at all! I think I want to try to work at first, for a 10 minute zap I’ll feel wrong not to but we’ll see.
Yes I saw there’s a what’s next course they run but it just says pre book on the website not when each cycle starts so again, when I have dates I can speak to them. BCC also do one in Edinburgh looks like November for that. I don’t know if I can get away with taking work time for both or not I may as well try! But they both seem to be midweek which works for my Edinburgh days which will be Tuesday Wednesday and some Mondays.
Now funny I just said I wasn’t tired... got big yawns and sweats on now! Gonna see if I can sleep in the bra or not... might need the fan on though it’s suddenly very warm 🥵
Evening lovely peeps
I thought I'd just try to catch up from my last little post, as I'm not sure I have the energy to go all the way back to my last big comprehensive reply.... but that means I have to start with Rosina's pee accident
But what a great start that is Rosina thanks for sharing, as I've had a largely mirth-free week, yet this made me laugh out loud sorry!!!
Hope for the sake of your laundry routines, that it was a one off!
Seaside, I hope that your bodily functions are behaving too don't want to cause a scene in church!
As for tiredness, to be honest I don't think I can ascribe my sleepiness to the radiotherapy just yet, I think it is more down to the fact I'm up, showered and dressed and out of the house by 8am every morning, and was then working till around 8 at night. 12 hour days are too much for me when I still don't feel fully recovered from chemo. By end of Wednesday this week, after 3 super long days like that I was weeping in frustration from the exhaustion. But yesterday and today I've taken it much easier with the work, finishing up by 6pm both nights, and I now feel much better.
Next week, I don't care how loud the clients shout about their urgent requirements. I won't work past 6.
I'm expecting it to get tougher though as I go into week 3 and 4 of rads and the fortnight after when everything is supposed to really hit you for 6. Might take some time off as holiday seeing as my sick pay has run out.
Talking of sick pay, got a revised contract emailed to me today from the HR department of the company that has bought out the firm I work for. The 8 weeks sick pay we used to have, has now been reduced to 5 weeks. Glad I got mine out of the way before that change came in! It is now even more rubbish compared to the 6 months pay a few of you guys get :/
Sonia28, I do wish they had run that genetics test for you sooner, so that it would be back by now. I read that the gene is pretty rare so fingers crossed you (eventually!) get good news x
(And I would have both my boobs off in a second, rather than go through chemo again! I already said to my other half that if they ever try to give me chemo again they won't see me for dust. Would rather take my chances. Maybe I would think differently in 5 years time or whatever, but right now, no way!)
Rosina, you've just made me realise why I'm fat if I accidentally made a double portion meal, there wouldn't be any leftovers in the fridge! And I'd still be hungry
Marlyn I am giggling at the thought of you skipping around in front of the AC unit in your bikini while your other half is wrapped up like an eskimo
Edinbird, when you go back to work next week, is that to your new job with all the travelling? Or to your existing role closer to home? If still the old job, when will the new one kick in?
Also, which of the Maggie's courses are you looking at? If it's the "what next?" one (or whatever it is called, the one that is like the BCC moving forward course), I called my Maggie's centre about that about a month ago and the first one available was September.
Daisydi what new phone did you get? I can't wait till my contract runs out as I smashed my phone screen 11 months ago and have had to put up with it all broken and scruffy ever since :/
Your hospital journey sounds like a nightmare! Are you going to have to do it every day? at least you don't have to do the breath holding.
I asked about that btw, apparently the reason I have to do the breathing thing despite being right boob, is because they are also zapping the nodes that run up my middle between the boobs and that is close enough to the heart that they want me to breathe in to move the heart out of the way just to be on the safe side.
Sorry the tats were painful hopefully they were at least quick. If it makes you feel any better, this one took 9 hours
Good news is that the actual rads appts are over in minutes, waaaaaaay quicker than the planning thing. And compared to chemo, the time flies. I can't believe I'm half way through my 20 days already, seems like I just started.
MBJ, glad you are feeling a little better. Did you find the lymphedema exercises online? If so could you share the link? I'm a little worried since the reflexology lady pointed out to me last week that my right wrist was noticeably larger than my left, I hadn't even spotted it was swollen. Nobody has measured mine like has happened with some of you....
Good luck with the garden! And the rock choir fundraising initiative
Rosina your eyebrows story was funny too I also rarely have "the energy for brows". I only draw them on if I'm doing a full face of make up which is only if I'm going somewhere special.
Edinbird thanks for the map
Sleepy time. Night night everyone xx
the sesame oil was for swishing 1 tablespoon full around the mouth every morning then spitting it out. I am still doing it.
Implausible thanks for the Aveeno information. I have only seen the bottle version in my local chemist. This is what I would have got !!! so thanks for the photo of the tub version 🤗
Aw Daisy I think we all are cancer buddies! I’ve not lived in Beccles since I was 21. I didn’t mark Kenninghall on the map where we lived before we moved up here. If I was still in Kenninghall I’m sure I’d have had all treatment at the N&N but in Beccles I guess I’d have gone to the Paget first? My dad went there when he had a stomach issue a few weeks ago but he goes to Norwich for his prostate cancer appointments. Not sure how it’s decided.
We have typical Edinburgh weather right now very heavy rain! Going to bed shortly the noise will either keep me up or actually be a soothing noise to sleep!
Thanks for the map Edinbird, I totally get it now.
Gorgeous sunsets and beaches where Daisydi lives though, this must somehow compensate for the parking aggravation.
The only other thing I can think of is she asks a friend to help out or finds out if the hospital runs some pick up/drop off minibus scheme.
Apparently mine does ( they keep extremely quiet about it as it is for the very elderly/disabled not sure who else) but another aquaintance of mine had to take her very elderly dad for radiotherapy and she has a walking stick and swollen legs and she used this minibus service for this purpose.
She even gave me the number.
I have never used it and nobody except for this lady has ever mentioned it to me or have I ever seen any posters or information about this service at the hospital.
So it may be worth enquiring as it cannot only be Daisydi that has to deal with this problem.
The numbers she sent me are PTS Sussex and PTS ETA. Am I guessing right that PTS stand for ‘patient transport service ‘ ? Don’t know what ETA stands for but this lady wasn’t making this story up. It was also a door to door service so it really must be for those with limited mobility/ very elderly.
Worth checking out.
Edinbird I am a 32C and I got the ‘medium ‘ most of my swelling ( or whatever it was - felt more like I had a brick under my arm) can’t have been swelling as I had the drain, general numbness and bruising I guess. I bought the bras pre op as I could not imagine doing any kind of underwear shopping post op. The crop tops are soft and stretchy ( pull on pull off) I kept them on continuously in the beginning as I didn’t have great mobility in my right arm ( the operated one) and getting them on / off became part of my exercise routine.
So pleased that my right arm has regained full functionality 7 months down the line ( even switching the shower on had to be done with my left).
Sarah I bought that one first and it wasnt very good for my skin. The one I have been using is in the same kind of bottle but I think its called intense skin relief in a black background instead of green. I have not seen the one you have been using. Will have a look online. Thanks.
Thanks for the map Edinbird. Shame you're not here now! We could be cancer buddies!
Daisydi, I'm fine thank you. As for your journey to Norwich it's about 30 mins longer than ours to Taunton hospital, which is for us on the other side of Taunton itself. We don't have a bus service there either☹.The good thing is they do have free parking in an allocated area for people having rad treatment. My problem is with the driving. Although I am in no way a nervous driver I just can't do long journeys and have to stay on familiar roads. So I'm ok around Yeovil, although I will only drive in on certain roads. I have read that this is a fairly common thing, but sometimes difficult for me to explain and people to understand. So upshot is, unless my local hospital can arrange transport Paul will have to take me there everyday and possibly work from home. One of his work colleagues will have the same problem since his wife has recently been diagnosed with bc.
Edinbird on the bra front, still, I bought an m&s post surgery tee shirt bra which is the most comfortable of the 4 that I've bought. Rightly or wrongly I gave up wearing a bra at night. It was too uncomfortable and things kept digging in. Also as I've said before I wear my birthday suit to bed so not used to wearing anything. Although I do wear a PICC line cover.
Implausible thanks for the extra information regarding the Aveena, I'd have bought what you originally did. What has everybody else tried?
Rosina you mentioned sesame oil when on T. How did you use it and was it for prevention rather than cure?
As you've probably guessed I'm getting armed and ready for CT and rads🔫🔫🏹🏹🗡🗡🔨🔨⛏.
Will catch up more tomorrow. Take care and have a lovely evening everybody xxxxxxxx
Just popping in super quick re Aveeno
I bought this one at first, as I didn't realise there are a ton of different things called Aveeno:
That turned out to be the wrong stuff
The right stuff looks like this and costs about £15 for an 11oz tub:
Hard to tell from the pic but I've so far used about a third of it, which is about right as I'm 2 weeks into rads now and I will need to continue applying it twice a day for the next 4 weeks (remaining 2 weeks of rads plus the following 2 weeks)
That is applying it *very* liberally everywhere, all over and around the boob, right up to the neck, over into the armpit etc.
Absolutely no redness or soreness anywhere yet. Just a little tingle on the skin which feels a little like the early warning signs of sunburn
I have created a helpful map to show Daisy’s predicament!
Blue arrow is where Daisy lives
Red arrow is the hospital
Yellow arrow is where I’m from if anyone is remotely interested 😂
Thanks for the link Rosina, I’d normally be a small in these but at the moment I think I’d be a medium... don’t really want to end up with something that’s too big in the long run. The bras that seem uncomfortable in bed are my normal size but I have put one of those extender things on the back so I have a wider band for now. It’s been fine all day. There’s an M&S near work so when I’m driving again I could go in and look.
Your eyebrows experience sounds good. I’m having to pluck mine plenty they really don’t seem to have changed at all! Considering I spent £225 on them before this all started... I don’t really feel like spending the further £50 to have them topped up. My eyelashes continue to be sparse but I don’t think it’s very noticeable... my eyelids seem to be constantly puffy though is that because of that? I guess with my glasses on you don’t focus on them. Was also looking at my nails, they’ve grown back to a decent length now and don’t seem to be flaking anymore. Even my rogue toenail isn’t falling off it just looks a bit grotty. Don’t want to speak too soon but hoping they’re all ok. Need to try some walking I’ve only been out once this week see if my legs have magically got some strength back too!
Rosina I live in a small village at the end of the universe or you would think. No bus service to Norwich as I cant go to my local hospital for radiotherapy. There may be a bus an hour but they dont go very far!
Me again, my dupe for not being able to swim in the sea :
Although, it will have to be before rads start and once they are over. Hello bath 🛀 time 🤗
Daisydi is there no bus service to your hospital???? I have one that takes an hour (stops every where) another that does it in 30 minutes .
Ocean21 and Implausible hope you’re ok.
Marlyn here is another funny story ( well both I and the girl at the Benefit counter in Boots were laughing) I went looking for a darker eyebrow pencil so I described what the LGFB had given me ( too light ‘auburn’ but better than nothing). So she removes my fake brows and takes as long as I take to do 2 eyebrows to draw one back on. When she gets me to look at myself in the mirror I tell her that the brow was ‘too perfect ‘ and could she ‘ mess it up a bit ‘ ? Which she did - and then she did my other brow ( dark brown) and it was lovely to see my old self again. I said if I took that long to do my brows I would never leave the house !
Which she found hilarious as I said some days I just didn’t have the energy for brows , and I also said ‘perfect’ is a word that doesn’t exist in my vocabulary anymore.
For some reason we were both laughing and she admitted that some mornings even getting up was hard work.
Laughter is the best medicine.
Link For Edinbird:
After coming out of my sports bra ( which I wore continuously after surgery round the clock- can’t remember for how long at least 3 days as drain was in and I didn’t want to move anything 😬) I switched to these which are fab. Still use them so not a waste of money.
Daisy I think I’m just being tight not wanting to spend any money on bras and also not wanting to buy any more clothes as I already get moaned at for what I have!
I guess at least you’ll be ok getting home after rads as it will be quieter then. I’m so lucky where my hospital is, even if I don’t drive to work it’s so easy by bus. Just want to know what’s next now so I can work out how it fits with the new job. Want to get signed up to the Maggie’s course too, don’t know what the waiting list is like.
Edinbird there were no disabled spaces free either! Its not so bad if I have someone with me as I can jump out if it gets too late and leave them looking for a space but I expect most of the time I will be one my own so will just have to deal with it. I agree about getting sports bras on but I bought a couple that were bigger sizes and found it much easier. Also had a couple with zips which really helped. Yes to keeping an eye out for Aveeno. Its £7 at the moment but goes down to 4 or 5 when on offer. Will need an industrial size bottle.
Good news about the job!
Forgot to mention Susie B in previous post. Hope you are ok x
Daisy wish I had a magic answer to the N&N parking situation... I don’t suppose even a blue badge would help? Have you considered one? Given that you’ve been using the mobility scooter. Shame you can’t run that along the Acle Straight, you’d probably get there in about the same amount of time!
I have some sports bras but I think they would be too tight and tricky to get off in particular, I always needed to be a bit of a contortionist to remove them. I’m sure they’d squash my swollen areas too much. I’ll see what it’s like tonight, it’s been fine all day. I also think my mattress might need turning.
Finally work have announced a lot of the people who’ve got jobs as I was anxious having had nothing in writing. But I now have an email asking me to revise my flexible working plan ASAP... have told them it will have to wait until Friday when I’m back to work. I’ve been told the parameters so it won’t take long. They can’t do the contracts without it but I’m sick so tough! Waiting to talk to my boss about my phased return, I have an idea but as usual he’s not got back to me which is frustrating but there we go.
I’ll keep an eye out for offers on Aveeno and stock up now!
I hope everyone of you is having an ok day. I am getting used to my exercise plan I found to do for the lymphodema I think I do feel better but my muscles are aching a bit ( just shows how out of condition I am). But it feels good to be doing something active and positive.
We have a friends and family night in Rock Choir next Thursday to raise money for charity, guess what it's going to be for breast cancer fair play to them all. So I shall be asking for the money to go to Breast Cancer Care who run this forum and also the moving forward course I did and the Becca app. I am also going to do the bucket collection in our local Asda in October.
Edinbird,bras were my main source of pain and discomfort. I think I spent a fortune on them. I think a sports bra is the best, tight but good but get one that you can do up in the back as some have to go over your head, I could not have managed that, but then I had a mastectomy and reconstruction. If you have some swelling maybe go up a size and reduce the cup size that's what I did. I found the Wings of Love from Amazon the most comfortable and they come up nice and high at the front so don't push your boobs into that cleavage shape which gets to feel uncomfortable.
Hopefully we have our ground workers coming back on Monday (at last) so been outside with hubby going through what we are having. I really hope they turn up.
Have a good evening girls x
Hi all, Ive treated myself to a new phone so have had all kinds of problems logging in to everything but I think I am sorted now.
Implausible you dont have to apologise for not writing long posts. We only want to know if you're ok and anything else is a bonus.
Edinbird maybe try wearing a sports bra, thats what I did. There's nothing to dig in and no clips or anything to worry about.
Rosina you did make me laugh last night. Been there done that especially at the moment as I seem to have developed a really annoying cough!
Nettie hope you are managing ok.
Maryln glad you have no nasty side effects from Anastazole. Makes a change!
Sonia sorry to hear you have to wait so long for answers. Must be torture for you and your family.
Seaside hope you got your tooth sorted.
Yesterday I had my hair cut as it was really breaking at the ends every time I combed it. Still losing so much but in strands and I can really see my scalp but I am lucky so I am not complaining.
Today I went for my radiotherapy planning, as expected traffic was awful and there was nowhere to park and had to drive around for ages. Lucky I went early. Have to give myself at least an hour and a half to get there and park. Just know I am going to get really fed up by the end of my treatment. I will not have to do the breath holding. Quite surprised how uncomfortable it was and I was laying there for ages with my arms up but hopefully wont take that long for treatment. Those tattoos hurt! Well the one in the middle of my chest did. They said Aveeno was good to use but I can have a good chat before my first treatment. I asked about the area to moisturise and it really needs doing from armpit all across chest up to neck and down under breast. Shall be using gallons of the stuff.
Hope everyone is well x
PS as I was checking out my tattoos I noticed my armpit hair is growing. Didnt realise, have been flashing my pits around to everyone today!
Finding it so hard to keep up these days as everyone is having different treatments and issues, there’s always something new! Hope we are all feeling ok today.
Well I didn’t sleep well last night because I changed bras to another non wired one but where there is instead extra material to replace the wire dug into me! So I had to take it off and then kept waking up to turn over as it wasn’t that comfortable and I had to keep holding my boob to do it! At 34b that’s not something I’d ever contemplated having to do! Put it back on now and I can try it again tonight but I don’t hold out much hope. I also have two of these bras in different colours as they came in a pack so doubly annoying 😕
Sonia try not to worry about the genetics test, nothing you can do until it’s back, 3 months is the normal timeframe. I had mine fast tracked because of my age, being triple negative and just about to start chemo (in case it affected the treatment plan). Mine came back in a month and was clear. I don’t know why it takes so long I never asked because mine was being pushed through. Ultimately I thought it was a good thing if there was something I can do to stop this happening again but I understand the extra concern with your children. I was concerned for my sister who had found out both her sister and dad had cancer in the space of a week. I’d be interested to know why they suddenly wanted to test you now though.
This time next week I’ll be back at work! Eek! Waiting to talk to my boss about a return to work plan, I also need to revise my flexible working plan for my new role but they’ll have to wait until I’m back for that. Given how tired people seem to be with rads I’m wondering if I’ll need that time off plus weeks after... getting to the impatient part again when I want to know what’s happening next and when. I want to book some leave but don’t want to until I know some timescales.