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
Hope you are all having as nice a weekend as possible.
Sonia, what remaining surgery are you waiting for? And how come you have to wait another 6 months yet?
Trixielady, it sounds like your hair is a bit like mine, I'm 2-tone too, darker brown around the back and sides and silvery on top. Wish mine would grow quicker too! But to be honest I'm just delighted it is growing at all
I'm guessing re the radiotherapy that you aren't having it because after a mastectomy and full node clearance there is nothing left to zap?
Rosina I've been following your amazing hike on Facebook - at least until your phone ran out of battery! All looked great - if exhausting! So many steps! I only just got to my 10k today and that was enough for me
Edinbird, hope you enjoyed your own giant hike around Sainsburys
Curious as to why won't you take a sleeping pill at the weekend? You need a good night's kip whatever day of the week it is....
Daisydi, and others wondering about eligibility for the oncotype dx test, I found this:
Who is eligible for the Oncotype DX test?
You may be a candidate for the Oncotype DX test if:
you’ve recently been diagnosed with stage I or II invasive breast cancer
the cancer is estrogen-receptor-positive
there is no cancer in your lymph nodes (lymph-node-negative breast cancer)
you and your doctor are making decisions about chemotherapy.
Some research also suggests the test may help postmenopausal women with estrogen-receptor-positive breast cancer that has spread to the lymph nodes make chemotherapy decisions. Talk to your doctor if you are in this group.
I had nothing showing up on the original scans re lymph nodes but they did find something in one node when they did my sentinel node biopsy. So I guess I must have just snuck in on eligibility based on that last paragraph....?
Ocean, amazing pics as ever, that sunflower field is spectacular! You didn't say how you are getting on....do you have a date for rads yet? I hope you are enjoying the break between treatments (that is assuming you have finished chemo)
Marlyn your hair looks great!!! Growing in thick and fast. And you have such a pretty, elegant neck.... you should show that off a bit while you can before the hair grows back in and hides it away
Susie I feel bad that you spent so much of last night awake, but how flattering that you had us on your mind I wonder what you wrote to each of us?
Hope you had fun at the Range. It used to be one of my favourite shops until they fined me £100 for marginally outstaying the mandated 2 hour limit in their car park (was having lunch with pals in their cafe and lost track of time, only over ran by 5 mins). They rejected my appeal against the fine and I've never shopped there since!
Good news that you won't have to do the tummy jabs this time around.
Nope I never took painkillers before the symptoms kicked in. Although that might help. Hopefully you still have a few days before you need to worry about that though. My "T" side effects never started until day 4 or 5 after chemo. Although maybe mixing the "C" in with the "T" will make it come in sooner? Whenever they arrive, I hope your side effects aren't overly harsh.
Can't wait to see your pink streaks when you get them.
As for me, I've had a fairly chill day. Had a long lie in to get over the past 2 tiring days, woke up quite early but just stayed in bed reading until about 11am.
Then in the afternoon me and my other half went for a little walk around Lydiard Park (local stately home type place with nice grounds):
Then I finished the day off with a couple of episodes of Stranger Things, and now (just after 8pm) I'm ready for my bed again!
Catch you all again tomorrow
Love to all
Well, what an interesting broken night's sleep I had. I know I think about each and everyone of you on a daily basis, but last night I was writing to you all individually in my head. Really long posts which I am sure would have taken me hours to compose in real life⌛⏳🕧🕐🕜🕑🕑📃📃📃📃📃🖊🖊🖊. Wonder how steroids will effect tonight's sleep🤔🤔🤔😴😴? I am feeling a little tired at the moment but have just returned from a trip to our recently opened The Range Store and Wickes. We know how to live it up!! Yesterday's chemo was longer than expected as the nurse didn't know if I was cold capping or not so hadn't started the machine beforehand. The nurses seem to rotate their days around every so many months so I've never met the ones on duty yesterday, but they were all lovely😚😚☺. The good news is that the onco thinks I should be able to manage without the Filisgram injections as my bloods and general health was all good on FEC. Bit apprehensive about it but willing to give it a go. Don't want any delays as final session due just 5 days after our 41st wedding anniversary, so we may get a meal out🥗🍝🍝🍽🍾🥂. Just started to get early signs of indigestion. Prepared for start of aches and pains tomorrow onwards - nurse has warned me. Did any of you pre-empt things and start to take painkillers before symptoms started? Sister-in-law and her husband are coming for a short visit tomorrow so don't want to be seen as sick cancer patient if you know what I mean🤒🤢😔😪.
Anyway, that's enough about me. Ocean 21 thank you for the georgeous photos. First fields of poppies and now sun flowers🌻🌻🌻🌻.
Hope your hike went well Rosina. I wish I had half your energy.
Marlyn your hair looks great, all the same length too, not like my random hair style. And with the added wicked, wonderful sense if humour you have😅😅😅.
There was some talk about onco tests but I didn't have one. I asked my hospital about them but they don't seem to use them. Think they must go on previous results, experience, knowledge, etc. Plus the fact I think when I had my first scan and examination it may have been apparent that my nodes were perhaps in a bad way as I was told at my results meeting it would be full ANC removal. For me these decisions were made at both Taunto and Yeovil so I sort of had a second opinion.
Implausible, I've seen a couple of pink hair swatches at my hairdressers so very tempted to go for it, maybe just a few high-lights though. As for the steroids you're welcome to mine!!
So I'm going to love you and leave you for now. Will catch up with you all tomorrow, or perhaps in my sweet dreams tonight😴😴😴😴. I know some of you are not in a very good place at the moment, you know who you are, so sending special virtual hugs ❤❤❤❤❤❤❤❤ xxxxxxx
Ocean21 what beautiful colours, the weather here today in the North East is awful its raining heavily xx
How are you feeling has your chemo finished?? were you HER2 +? Xx
Ocean, oh my....such beautiful photos.....simply lovely!
posting a pic of latest hair growth, I seem to have had a spurt ( of hair that is....not a tenna lady moment)
Ocean, oh my word those glorious sunflowers. It would be impossible not to see those and not feel uplifted. Stunning. 🌻🌻🌻🌻 Love the plaited Hibiscus too. Xx
Hey lovely ones,
Goodness , it’s been an emotional rollercoaster week for some of us.
Edinbird, so sorry to hear that you have to back for more surgery. This bc business is certainly a challenge, throws spanner’s in the works for all of us one way or another. You’ve always had a great mental attitude so keep with that. More surgery is a pain in the bottom but we’re all with you .
MBJ, funky chick Keeping rocking that short hair , you look great. Fab that you’ve finally got the diggers in. It’ll really lift your spirits when the garden is properly landscaped around your lovely house.
Susieb, great that the scan showed all clear.
Sarah, I’m tired reading about your travelling for your rads!
Rosina, good luck to you our resident Olympian power walker. Wonderful that you exceeded your fundraising target.
To the rest of my swollen boobed, swollen legged, fruit sized swelling under the armpits, sweating and randomly knackered , when’s my hair growing back sisters you’re all fabulous 😘😘😘
As always some photos for you.
Good luck Rosina, I'm with you in spirit! Don't know how you do, you certainly are a machine.....my day will mainly consist of....Tesco....home...coffee.....walk dog....home...collapse! I might indulge in some midsummer murders....I think I'm all carried on out...
Morning all, good luck for today Rosina. Its just started pouring with rain here. Hope the weather behaves for you.
Edinbird at least you dont have to wait too long, only a few more days and then you can make a plan. I have very large boobs and even after all those surgeries my bad one is still large which is why I chose to have a third surgery. Its almost easier if you are not given a choice and just told what needs to happen and then you can deal with it which you will.
Hope everyone has a good weekend even though the weather is pants!
PS MJB I agree with everyone else. You really suit short hair x
MBJ, that's a gorgeous picture of you with your daughter and grandaughter. You look great with the short hair. Sarah's right, you've got such a feminine face so you can definitely rock that look. Very pretty.
Nettie, those hairstyle pics are great. Love the fact you got lashes thrown in as well. I need some of those! Hope you manage to stay infection free. Cuddle up with the dogs and a good series xx
Trixielady, I know what you mean about decisions being made for you. Mine was similar. I had to have chemo because it's proven to work with Herceptin so I didn't even qualify for the oncotype dx test. I decided against the POSNOC trial because the doctor recommended anc and rads for me.
Hope everyone is doing OK this morning.
I'm soooo tired, I will definitely need a nap.
Good luck for the hike Rosina!! No way I could even think about walking all that way! I’m going to do a walk round Sainsbury’s in support! 😁
Didn't want to take any pills on a weekend so just sweated through the night instead. Been looking up mastectomies and all the fun they entail - I can’t see that being great when I have small boobs to start with so reconstruction is awkward. No point worrying when that might not be recommended but it’s hard not to think about it. I’m back in that don’t know what’s happening limbo and I hate it. Thanks for all your kind words, I know some of us have had a clearance and some a mastectomy so I always have you to turn to xx
I know how you feel, I had terrible pains on WBC injections that's why they changed my chemo regime.
Trixie is doing really good at the moment but I still can't walk to far by myself so unfortunately its only a short walk around the green in front of our home. Fingers crossed you stay infection free and the headache and pains ease xx
Marie, what a good looking family you are. You look so glamorous and super cool with your short hair. Very rock chick. I think you should keep it short. X
I was offered to take part in a research trial called POSNOC, in it 50% of the participants have ANC and the other half do not. No choice it was randomised by computer. Then both groups got chemo and hormone tablets. I decided I did not want to risk it so declined and had all my nodes removed (2 were found positive). I am now so glad I had them out as I failed to complete the chemo . I did have the ONCO test done mine was 27 which was why they recommended chemo. I think not completing my course will haunt me for ever.
Trixielady, I’m here and Ok thank you. I’ve got a lot of back and hip pain and headache at the moment from the wbc injections but I never mind it as I feel it’s showing they are doing their job. Painkillers are helping a bit so all fine. Next week is usually my danger zone for infection so I just need to plod on and hope I remain infection free. I’ve got my appt with Onco on 29th to discuss what Oestrogen suppressant I’ll be taking. I’m post menopausal so maybe Letrozole or the other one beginning with A?
How’s little Trixie dog doing? My dogs have been an absolute godsend the final 2 cycles as I’ve been mainly housebound trying to keep infection free. They have been such good company bless them. Xx
I must say due to the uncertainty of this barry bc I'm really glad after reading on here I didn't really have to decide on my surgery and treatment, I was more or less advised on the need for a mastectomy (skin sparing) then on a full node clearance although still having issues from under neath of arm, feels numb and slightly swollen at times but exercises help and massage, I was told i didn't need oncotype tests because chemo was a must followed by herceptin and tablets, so I'm really pleased i suppose but still wounder why i didn't need rads!! Thinking about you all and the difference in treatment and the awful choices you may need to make xx
Has Nettienoo had a post lately?? not sure if I've missed her posting hope shes ok, sure the last thing I read her temperature was high and she was suffering headaches?? Xx
MBJ, loving the hair wish mine would grow at bit faster its browny /grey at the back and grey /white on the sides. Looks like you have a great time at your right rock choir, i haven't a musical note in my body, my bestie is in a choir and finds it uplifting. I Love hearing people singing xx
Not sure if I said but I've started on letrozole to not sure if the heavy legs are from tablets or the herceptin injection are you suffering any side effects?? Xx
Edinbird sorry to hear things aren't going to plan but hopefully once you get your head around it you'll be able to plod on, hopefully you'll see the bigger picture and and if needed you'll feel better about more surgery just try and remain positive, its so difficult to say the right thing but we're all with you, keep fighting girl and do whatever is needed xxx
Sonia ...you'll be starting hormone stuff while still halfway through rads then? Weird how different all our regimes are. I've been told I won't see the oncologist again until 6 weeks after rads, and he hasn't even started to discuss hormones with me yet. In fact I only know I'll be having them because my surgeon said so right back at the start of all this.... so I figure I won't be starting until at the earliest mid September
yep I’ll have another 6 rads to go when I get the first hormone injection.
funny as when I saw dr yesterday there was nothing in my notes about when I would start. So she was going ask, then next day I see oncologist,
im a bit miffed that I will have no surgery for 6 months, when I know lots of you are having surgery now or before 6 months, but as you say Treatment plans are all so different,
Deano, rant all you like, that’s what we are here for,
sorry your having such a rubbish time, sending you cyber hugs 🤗
Thanks for all your feed back on swelling - I was told my body needs to re route the fluid and I tried the exercises but I cannot do them due to the swelling I’m going to look at the lymph node exercises drainage and see if his helps. They gave me a cushion to put under my arm but again it gets too painful I am back next week for my results so I’m gonna see if I can manage and have it drained again. I can’t even wear a bra due to my big boobs which doesn’t help.
Bloody surgery/cancer/chemo grrrrrrr proper fed up with the lot 🤬🤬🤬🤬 of it....,,,,,
Rant over off to bed tomorrow is a new day 🙃
Sarah I'm not sure why they wouldnt let me do the onco test either. It must be their trust policy? I was even going to pay for it myself (or my sister offered to pay for it) but they were adamant and that was when 1 out of 3 nodes were positive. Its always bothered me in that they have never told me the whole story!
Well I'm proper zonked after 2 trips to the Oxford zapping centre today (4.5 hours travelling and lots of waiting around as the machine is still being a little temperamental), but let's try a quick reply to everyone before I pass out
Nettie, that app looks like fun your heavily filtered face there really reminds me of someone famous, especially in the pic with the fringe, but I can't think who!
Thamks for the podcast link Rosina. I'll have a listen when I'm in the right frame of mind. I tend to avoid reading/watching/listening to "cancer stuff". Not sure why. Don't want to hear anything that might worry me, I guess. Plus I try to spend as much time NOT thinking about cancer as I can. (Bit difficult when I'm at the Genesis Care Cancer Centre every blooming day
Oh and huge good luck for the giant hike tomorrow!!! Hope the weather treats you well, not too hot, not too cold, not too wet.....
Susie yes!!!! Dye your hair pink!!!!! Join me!!!!!
Hooe your chemo went well today. Enjoy those 'roids. You know I'm jealous of that part at least
Daisydi, glad to hear that that your rib/tummy pains are on the mend
Edinbird, I already posted earlier re your onco meeting and disappointing results. Hope you are coming to terms with stuff slowly. I know you are a tough cookie!
Just spotted your earlier post about your legs not being tired any more when you were walking. That's fab news. I hope mine come back to life soon too!
MBJ that's brilliant that your choir raised so much money for BCC! And you genuinely look fantastic with that cropped do! This is going to sound odd, but it works so well because you have such a pretty, feminine face. So you can carry off really short hair without remotely looking like a boy Whereas I think I have quite masculine features..... so I'm not sure I could rock that look so well. Maybe with make up on.
But anyway, yes, you look fabulous and I LOVE that 3 generations photo too. Beaming smiles all round
Rosina, congrats on smashing your funding target just in time for your hike. And hopefully you and H1 will make up in time to enjoy your alone time without the kids
Glad you get an extra recovery day before starting rads
Sonia ...you'll be starting hormone stuff while still halfway through rads then? Weird how different all our regimes are. I've been told I won't see the oncologist again until 6 weeks after rads, and he hasn't even started to discuss hormones with me yet. In fact I only know I'll be having them because my surgeon said so right back at the start of all this.... so I figure I won't be starting until at the earliest mid september....
Daisydi, I did have the oncotype dx test (and I also had one positive node so I'm not sure why that stopped you having it?), and my result was fairly high (34) which was why I had to have chemo (anything under 20 and I wouldn't have, apparently).
Both my surgeon and my oncologist independently (unless there was some off screen collusion I'm unaware of) recommended that I NOT have a full node clearance, despite my one positive sentinel node (out of only 2 removed). They both assured me that chemo and radio targeted to my nodes as well as breast, gives the exact same results as full clearance plus chemo plus breast-only rads, which was the alternative.
So I took their advice and didn't have the clearance.
Got to say I'm a little nervy about that decision now given that 2 people out of our little group still have node involvement after chemo.... I just need to hope that all these rads have taken care of anything that the chemo might not have fixed.... fingers crossed eh??
I had my swelling drained twice after surgery, 5 weeks ago today. 1st one about 10 days after the 2nd 8 days after. I still have sme swelling but I think this is general post op bruising plus a bit of fluid. It was painful Tuesday to Thursday this week as every time I put my arm doen staight it made the area bulge and tighten, sorry that's the only way I can describe it. Today it was a lot better so hopefully yours will improve too. To help things along I still do the arm exercises along with gentle massage around the lymph nodes in the upper chest/neck area, run my hand along the outside of my arm, do breast stroke movement and roll ups, pretend you're lifting a dumbbell. Basically do anything to keep the arm moving, it may be coincidence but my tennis ball hasn't reappeared since.🤞🤞🤞🤞. If it gets too uncomfortable then get it drained agained. Hopefully that will be for the last time. Hope this helps. Take care xxxxxx
Sorry you're still suffering with swelling in your armpit. I know how comfortable it is. I always described it as having a golf ball under my arm. Mine cleared without the need for draining by just keeping my arm moving as much as possible without causing pain of course. I hope it clears soon for you. Xxx
Hope you're all done and back home resting by now. Well done for getting back on that chemo bus- you can tick this one off now. Hope you have a restful weekend. Xxx
Edinbird, so sorry to hear your news. I can only imagine how gutted you must be feeling. We are all here for you every step of the way. Big hugs xxx
Deano I had a drain in after my anc for 6 days. When it was removed I got a bit of swelling but my bcn said it just needs to find another route to drain. It was never that bad. I think I found specific exercises on You Tube but it all just settled down in the end.
Ive just got to get this off my chest as it is really playing on my mind. Sorry it it is not what you want to read. When my team "forgot" to do my anc after all the apologies and taking full responsibility etc. etc. my surgeon said that in the US they dont do the anc any more as they proceed straight on to chemo as the chemo kills all the remaining cancer cells and the radiotherapy will deal with the DCIS. I was seriously considering this as I really did not want to have a third surgery, let alone a full clearance if there was a choice. I didn't want chemo either but suspected that I would have to have it anyway. I really wanted an oncotype test to see if my tumour would respond to chemo but that wasn't available as at the time I had one positive node. When I went back to get a further follow up my case had been discussed at the MDT meeting and my surgeon said they insisted on me having the clearance as chemo alone was not approved by NICE at the time. Reading up on Susie and Edinbird's experience now I am so pleased that this was done as there are no guarantees that chemo alone will kill all cancer cells which is what I truly believed. It just goes to show how important the oncotype test is to see whether chemo is beneficial. Just wish they would do it for everyone. Sorry rant over!
Edinbird, thinking of you, bit what you wanted to hear. As you know I had the mastectomy, I wasn’t give a choice, and although it wasn’t what I wanted they got all the tumour and DCIS, fingers crossed it will become clearer on Wednesday. Xx
Well after my blast session today they said oh the Dr wants to see you, panic set in as only had med review yesterday, it ended up being my oncology consultant who went through all the hormone treatments with me, injection and pellet are booked in for Monday, going to take part in aspirin trial, he then tried to book bone infusion which I told him I’d already had, he explained the letters are behind, glad I take notice of what I’m having. No surgery for 6 months 😥 so this black cloud will hang over me until next year.
Susie hope the chemistry session went okay xx
Rosina good luck for tomorrow 🍀at least you’ll have some piece and quite if H1’ and you are still not speaking xx
Edinbird, nothing much to add to what has already been said darling. I hope you can take some comfort from the posts. You can and you will do this but for now go and have a good cry/rant/swear....whatever you need to do. Things won’t seem quite so bad when you have a clear plan of action sorted after Wednesday. We love you. Xxxx
I have had lymph node clearance back in December but I had a drain in following surgery. I did get a it of swelling once it came out felt uncomfortable and a bit hard. That went after a while. But I still have swelling not right in my armpit but under my arm where my bra sits. Some days it is very uncomfortable but mostly it's manageable. I also have a reconstructed breast so this might make a difference too. I need to always wear a supportive bra, but not to bed anymore. I am not sure how much mine will improve, another lifetime gift from BC but I am exercising every day and doing the dry skin brushing. To try to keep the lymphodema under check.
Really sorry to hear your news as reiterated by some you are strong and you’ve come this far and you can battle through another surgery we have so many hoops to jump through and this is another one if we can get through chemo we can get through anything....
can I ask if anyone had lymph node clearance how long for the swelling under armpit to go down had mine drained this week but it’s the size of a grapefruit again so bloody painful as well.
Any tips on how to reduce this without drainage would be appreciated
Susie good luck with T
Also loving the photos and stories you are putting on
hang in there with the chemo.
I am flopped on my bed, resting.
Got a call from the Hospital, rads are now due to start on Tuesday instead of Monday as they haven’t got a consent form from me for the Booster week. I get to see the oncologist though too and another CT scan to get marked up for the booster zap. I was verbally told about the booster but no paperwork was given to me to sign so the oncologist assistant has probably missed a trick there. Anyway it’s better for me. More recovery time from the Hike. 😊
So from one 1pm on Tuesday I am hanging out at the hospital.
Have a good weekend everyone.
Hi Rosina, enjoy the peace and quiet while you can
even if it's not the way you expected. Hope H1 gets over his hump. Well done on the fundraising collection. Hope your hike goes well tomorrow. I'm currently sat here in the unit having just had my T now about to have the C. xxx
Edinbird so sorry to hear your news. Do must feel devastated at the moment, but you are a very strong lady and you will get through this. Take heart on Daisydi's experience. If possible and you have the choice then I would take the slowly, slowly approach and try and get clear margins. Full ANC is fine and the scar will be the same you have already. As the others have said we're all here for you so talk to us when you feel ready. Sending you virtual hugs, just wish they could be real ones❤❤❤❤❤❤❤❤❤❤
Hang in there Edinbird,
I will be thinking of all of you on my hike tomorrow.
I went into to school today ( without any head covering) I am quite liking my mad Einstein look when I am in the mood.
I was supposed to meet up with a colleague re. Some of my students for next year and she had forgotten that she had training to do instead. Anyway, there was plenty of stuff to keep me occupied ( just familiarising myself with the new upgraded computers for a start 😳).
Best bit , pat on the shoulder from an ex- student ( we got on , he has a wacky sense of humour, ADHD and loves dancing to BoneyM 🤗 his peers couldn’t get him 🙃) he asked me how I was and whether my treatment was over . My reply was this is going to be chronic but I am dealing with it 🙂
Breakfast this morning was a ‘green smoothie ‘ : 1/2 avocado, fistful of kale, fistful of parsley, 1 banana, coconut milk 2 tablespoons, water. It tasted alright ( my concoction).
H1 has got the hump and isn’t talking to me ( good , peace and quiet).
The kids are off to my brother and his lot for 3 weeks on Sunday.
Anthony (k2) quips so are you to going to have some quality time together 😂
Got to laugh, seriously, life is nuts.
On the fundraising side , the decorated shoe box on my desk had £78.30 in cash when I opened it at home. It has been added to my Just giving page and I have now broken my £500 target.
Oh Edinbird, it must feel like life kicking you when you're down
I know you are a practical person and once you know exactly what's going on you will rally and take it all on board and cope brilliantly.
But until that point, allow yourself to be disappointed, be upset, be angry with the world. They are all natural reactions to news that wasn't as positive as you were hoping.
We are all here for you x