Hello everyone, lotsnof talk of courses this week. Claire I cried a lot after treatment finished and I read the article “after the treatment is over what then” by Peter someone. Sorry I can’t remember his name! I found that article really good and relatable. So much of what he said was how I felt. Even if you have read it before it might be worth having another read at this point. I agree with both you and Kip that you need to be in the right headspace to move forward. Crying is good though, I found it felt good to let it all out and I’m sure you will feel better soon.
your xourse does sound good Kip. I know what you mean about it sounding fluffy when you right it down. I used to hate all that “fluffy” stuff but I think now it is exactly what we need, we have been to some dark places so now it’s our time for something lighter.
I feel like I am in the right place mentally for moving forward course but the next one starts in April so I have a little while to wait.
Setting swimming as a target was a good idea Kip, it’s always more motivating when you have others to ‘answer to’ I’m sure it will help with the stiff arm and hopefully the other aches and pains. It appears I’ve been lucky and escaped those, I’m also on TEVA.
Jean your holiday seems to be going well and what was that food photo of that you sent through? Is it normal to come away from reading a BC forum and always feeling hungry?! I agree with you and Kip, I like being here because I feel like I know you all and you are always so supportive with the ups and downs that we go through.
I am back running, you asked what’s next? Well I have a half marathon in 2 weeks that I did last year, just before diagnosis. I’m not ready for it but am going to do it anyway. It’s my way of saying “look what was thrown at me but I’m still here and still running”
Another development on the what’s next front is one of my dog walking friends has decided we are going to do next years charity event for Velindre. It’s walking on the Great Wall of China! So it looks like I need to get fundraising again. It will be harder to raise money this time as my OH isn’t doing it so we won’t have his workforce behind us. However I have a few ideas!
Reddi sorry to hear you are starting to get sore skin. I have to say I found rads the hardest treatment, although it is different for everyone. Keep applying the cream and get gel if the skin breaks. You asked how I feel since returning... On the whole positive and kind of as if I have put it behind me (bc). Obviously I have moments but I try not to dwell on those thoughts. It’s nice not to have the pressure of fundraising but as I’ve just said looks like I’m going to have to start again! I will try to post some pics but I’m not great with the techno!!
My claim to fame today is I ran in Cardiff parkrun against England 10k no1 Charlotte Arter, she was third I was 638 so have a bit of catching up to do!!!
Have a great weekend all xxx
Hi Cdc, seems the forum is acting up again... Lets see if this makes it into the right place.. Macmillan run the Hope course and we have a Macmillan centre at our hospital so I heard there but it's online if/when you feel ready. You do have to be in the right place to do it, ive found today I've been dwelling on things a bit perhaps it stirred things up somewhat. I've been very close to tears of late too, the old what ifs again. I know I am starting to worry about the mammogram in April and the cancerversary!
On a brighter note I've just been swimming and it was great although I hadn't realised just how stiff the arm and shoulder are. It seems to have helped a bit though, but may.not be able to get out of bed tomorrow.
Now having my reward... 🍷🍫
Hi all Sorry for delay in posting- I’m up and about and doing really well. Thanks for your lovely comments with regards to the FB photo Kip. I had my results appointment today and WOOHOO! They removed all the cancer so I’m officially cancer free. Soooo happy! They did actually find further cancer in both breasts only a 4mm of DCIS in the left and 2mm of invasive cancer in the right which the consultant said they hadn’t expected to find but I’m so glad I trusted my instincts and went for the double mastectomy and he agreed it was the right decision. Just thought- does that mean even the chemo didn’t kill it all??? I have to see the clinical oncologist to discuss radiotherapy on the right as the guidelines advise it for any tumours over 5cm and mine was 5.4cm but they may say I don’t need it. I’m also healing really well and have to keep reminding myself not to lift things or bend too much- I forget as I feel so well and then end up in pain! Mainly my abdomen. I was still getting a lot of aches before surgery but they’ve eased off and I’m wondering if they are Tamoxifen related as I had to stop taking it for a few weeks. Start again tonight so will be interesting to see if the aches return. I’ll let you know Kip. Sorry I’m not up to date with everyone’s news but I believe your OH is in India Jean and you will be joining him. Is that right?? If so how exciting! How are the wedding plans going Lisa? Reddi When do you start rads? Take care and hugs to all xxx
Sorry my last reply was from earlier today but it’s only just been posted so doesn’t catch up on other news! Still. Haven’t got the hang of the new forum. But trying to persevere as we’ve been through so much and supported each other for a long time. I solved the signing in issue but it now seems to be saving all my replies as drafts- never knew this was a feature!!
Anyway good to hear from everyone and I do hope Red Rose will try to navigate the forum again xx
So interesting to hear your experience of the Hope course Kip and the Moving On Course Jean. How did you find out about them? I visited a friend who has just started a similar course. She finished active treatment 6 months ago and after she showed me her course handbook I realised i’m not quite ready to go on one. She agreed it was something to do a bit later after i’m Fully recovered from surgery and getting over the sheer enormity of what I’ve been through. I’ve been crying every day and I’m not even sure why. Doesn’t help that my complaint against my hospital still hasn’t been resolved to my satisfaction and I’m now having to complain about the way they’ve handled the complaint!! I think I’d find setting goals and targets an an added pressure at the moment but definitely something to think about in the future. I am thinking of returning to the Maggie’s I went to regularly but I’m just so nervous about going as it’s in the grounds of the hospital where I had my initial treatment. I miss the people there and talking with those who ‘gets it’. they’ve always said they’re independent of the hospital and I’m welcome there anytime so I might just bite the bullet and pick a day next week.
Hope you enjoy your swimming session Kip. Do you think it might help the aches and pains? I could do with a spell in a hot tub but still not allowed a bath so it will be a while yet!!
Jean, I think you are right about the stitch. I didn’t realise that some take longer to dissolve. I have a meeting with my PS in a couple of weeks so I’ll see what he says.
Im shocked to hear the Flat Friends group is so militant about people leaving immediately if they decide to have recon. I’m part of a closed group for people who’ve had or are thinking about DIEP. Some of the people decide they want to go down that route years and years after they’ve beem flat. It’s such a personal decision and neither is right or wrong. I also stopped participating in another BC forum as many people were getting diagnosed with secondaries and I found it difficult.
Reddi, how are you getting on? Hope you are not too sore. When do you finish rads? I should be starting my trial by the end of March as you are right it has to be within a certain timescale of starting hormone therapy. I still keep thinking they’ll find a reason I shouldn’t be on it or I’ll be on the no additional drug arm of the trial.
Michelle, how are you now you’re back home?
Take Care eveeyone
ps can you please say Hi to Sally from
Looks like RedRose beat me to it.. and posted on the June chemo thread.. yayyyy!!
CDC - just been to pick up my next month's Tamoxifen and its Teva again.. should be interesting to compare the next month to this one and see what happens!
For all those desperate for a "dress update".. I've messaged RedRose and she's going to attempt the forum again.. I think she had problems with the new design but I've told her its behaving (mostly now).. so we wait with baited breath!
So much news!
@Feenix No more food photos! (What I really mean: More food photos, please! Gah, that looks yummy.) I'm incredibly envious of the weather, too -- I love it when it's hot. How long are you there?
@Kip Your course sounds really interesting. I heard one of the BCNs in my department chatting with another patient about a Moving Forward course in May -- but they haven't mentioned it to me yet. I'm hoping my Herceptin injections don't count as active treatment; waiting til October for a course will feel interminable. I'm ready to start shifting my mindset -- and I'd love to have a goal-setting group help me on the exercise front!
@Michelle21 I'm in awe of your trek. What an experience. I wonder if the transition back to everyday life feels like a less pressurized relief or a somewhat boring letdown or a combination of both or something else altogether. I expect I'll have some combination of the two once I stop trekking to the hospital every day -- without the huge accomplishment or the amazing experience you've had. Are there any photos from the trip that you might share with us armchair travellers?
@cdc How is your stitch? I had one that seemed to be making its way to the skin, but then finally dissolved, so no need for the nurses to pull it out -- though it sounds like it's relatively simple for them to deal with, if necessary. And I also hope the little open wound on your belly heals soon -- it's being a bit obstinate! Otherwise, it sounds as though you're healing very well. For endocrine therapy, are you on tamoxifen only?
For me: 4 more rads to go! (As I said, I'm more than ready to be done with these daily hospital visits.)
Well yesterday was day 1 of the Hope Course and I have to say I really enjoyed it. On arrival I was a bit apprehensive (not helped by the fact I went to the wrong church hall.. I thought the attendees all looked to be over 70 but realised they were playing bingo). 7 of us attending Hope, a mixture of different cancer types (1 chap bless him). This week was mostly introducing ourselves and explainign a bit about our types of diagnosis, treatment and what we were hoping to get from the course.. mostly all want some help with the worry gremlins! It was so good to be in a room with 7 people who all "get it" It was lead by 2 invigilators, 1 had neck/head cancer 13 years ago and the other's husband had had bowel cancer 10 years ago so quite well placed to help us. We all shed tears, had a rant but most of all laughed and sympathised with each other. We spent time learning diaphragmatic breathing, talked about setting Smart Goals.. each of us had to set one (course invigilators too) so that we can see how we get on for next week. Has to be something small and achievable and something measurable and also have to set a reward for doing it and a date/time that it will be done. This is supposed to help us begin to plan and feel good about doing things again. I decided that its time to hit the swimming pool.. so tonights the night.. swimming cossie is ready.. and actually I feel really motivated to go so that I can report back next week that I did it. Some set small things, picking the paint for the bedroom they've been wanting to do, taking back a faulty water softener or cleaning the car, sounds silly but we were all really enthused to take on a task. Also they suggested when you go to bed to think of one thing that you are grateful for from the day or days previously, not something that you feel you have to repay in anyway, one lady was grateful for receiving a photo of her granddaughter in her first shoes that day, another was grateful for the sunshine and seeing her guinea pigs enjoying it. All sounds a bit fluffy when I write it down, but a nice way to spend 2 and half hours.. oh and there was cake too always a bonus. In the following weeks we will be looking at diet, exercise, fear for the future, self esteem, dealing with fatigue etc so I think things may get tougher as we approach those "scary" subjects but overall I came away feeling lighter so definately enjoyed it.
Also learned that out of the 4 of us there who have had breast cancer... 3 on hormone therapy all suffering with aches and pains... good to know but still annoying!!
Clare ... I found the moving forward course beneficial and still meet up with some who did it with me. Hopefully that little area on your abdo wound will sort itself out..might need that stitch trimming. Sometimes you get the odd stitch poking through .. depending on the type of stitch material it may be one that has a longer length of time needed to dissolve. Sounds as though you’re not doing too bad on the Tamoxifen. I think good and bad days are the norm as I find my joints are ok then I have a day when they are more cranky. I sometimes think they are worse if I’ve not been so active. Youll have had an enjoyable lunch with your friend. I’m probably chilling too much but it’s too hot during the day to do anything else... plus being post viral = tired. I’m not active as I would be at home and the most strenuous things I’ve done here is do some washing and peel/chop veg lol.
Kip ... you’re doing well with the hooping. I kinda miss mine as it’s so easy to pick up and twirl...feel as though I’ve done something then. I did a bit of spot jogging and hiit yesterday...and that’s it !! I’ll have to get back to regular walking etc when I get back home. It’ll be interesting to hear what the Hope course is like. My bcn said some women who had done it found it to be beneficial. Good to hear you had a positive couple of weeks. It’s near impossible to avoid the adverts back home...there’s nothing like that over here. I’m on the closed FF Facebook. I don’t have FB open so there’s no pinging going on all the time .. it would drive me mad. I dip in every now and then. SallyG is on there too. Like you, I’m on here the most regularly...feel like I ‘know’ you all.
Just remembered I did have a bit of a dip when first on the moving forward course. I think it was with talking about things and listening to others, sharing etc...but I still found it beneficial to do that.
Youve definitely got a busy April. I’m going to go back to foob fitter sometime as I’d like to try a lighter foob.... only used mine on two days so far. Travelling... I’ve got a softie and KK with me.
Reddi... good to see you are getting through your rads and nearly finished... not so good about the se’s.
Michelle.... hope you’re recovered enough to get some walking or even running in... or are you having a bit of a break? I was disappointed that I missed a good rugby match last weekend...my two fave teams playing. I knew by following the online scores that at half time Wales would trounce England. I’m not sure when the next matches are on....hopefully after I get home.
have a good day
Morning CDC , glad you are feeling a bit brighter today. Its a funny old business isn't it. I have had 2 really positive weeks, managed to put the worry gremlin to bed pretty much but suddenly last night there it was again. I seem to be seeing cancer adverts everywhere and sad stories. I joined the Flat Friends facebook page over the weekend and, sadly have had to unfriend myself from the private groups as everytime I opened my phone another sad story popped up and I just cant handle that right now. I felt so guilty doing it but just couldn't cope with it. It was a very strange page to join, you had to accept a friend request from a "robot person" and then the list of dos and don'ts was quite strict.. they said "if at any point in the future you decide to have reconstruction you must leave this group straight away" almost felt a bit cloak and daggers and not very supportive! Decided I would stick with this forum as I feel I know you all and feel safe here.
I'm glad you are feeling less aches and pains on the Teva pill, mine are not consistant either. I can feel pretty good and then go for a little walk and then ache like crazy. Some nights are worse than others too. I haven't braved the pool yet, must check the times in a minute and make the effort. Just hoping I can climb out once I'm in! Have you started the trial yet? I've had about 11 days of 100mg of aspirin so far and no side effects as yet.
I start my Hope course tomorrow so I'll let you know how that goes, just hoping it doesn't open up old wounds and start the stressing again.
Feenix - I hooped again today.. yipppeee!
Michelle - hope you are recovering from the big trek!
The trek does sound very tough for all sorts of reasons Michelle but what an a achievement and well done for raising all that money! I’m feeling a bit brighter today and going to catch up with a friend for lunch. Even my post-op fact sheet warns that being tearful is to be expected! Glad your emotions settled down fairly quickly, that’s encouraging to know so thanks for sharing your experience.
It is hard not to think about the ‘What ifs’ especially as you’ve been amongst people who have lost loved ones. I agree though, we have to try and remain positive. I know some people have been on various Moving On courses. Did anyone find them helpful? I’m going to see what available locally.
So sorry to hear all about your continuing aches and pains Kip. I’m doing better on the TEVA tamoxifen but last night I had to take painkillers as I ached all over. I seem to have good and bad days. Did you get to go swimming?! I’m so looking forward to being fully healed so I can go swimming or at least have a bath. I have a tiny area (less than a cm) on my abdomen wound which just will not close. I noticed there is part of a stitch that has come to the surface. I was told my stitches would just dissolve but this one show no signs of going anywhere so I’ll ring the BCN from the plastics team and see whether she thinks I’ll need to have it removed.
Jean, how amazing does that food look?! I loved the meals I holidayed in India in 2000. The food tasted so different to the curries etc... I’ve had in the UK. Much lighter. Hope you are having a restful time and not too hot!
About to press post, fingers crossed. I’ve logged in first - great tip!
Michelle - well done on the trek.. sounds like a wonderful event if a bit emotional at times. That is an amazing amount to raise too... inspiring! I agree with the positivity .. I'm trying really hard to look forwards.. not looking forward to April as thats the year anniversary and first mammogram.. but hopefully get past that and move on and enjoy the Summer this year without the chemo head to deal with!
Feenix - that photo looks scrummy.. glad you're having a good time. I did get the hoop out this morning and didn't get stuck in it! Did 10 minutes and a 10 minute quick doggie walk.. might even try to go swimming this week. Hoping more exercise might loosen the old joints a bit. Still aching like crazy, every joint.. but otherwise feeling quite well. The lady in teh bakers this mornign said "wow you look really well"... not sure what they expect but I guess thats a compliment! The alternative isn't great... although she then followed it up with "you've put on weight... oh but it suits you"... hmmm tell me something I don't know.
CDC - how are you feeling now... hope the post treatment feelings are abating.. its a tough one. I'm starting the Hope moving forward course this week, and although I'm looking forward to it, its just another reminder but hopefully will be a rewarding experience... I'll let you know.
Also had a call yesterday from BC Nurse to arrange a date for fitting of prosthetic boob... haven't got a date yet but have plenty of up coming dates at the hospital... mammogram, follow up appointment, follow up for aspirin trial...all in April.. eek.
Red Rose where are you.. we all want to know about THE dress!
Reddi - how are you doing, glad the Rads are ticking off...soon be done!
Michelle ... sounds a very emotional trip at times... but great you did it and raised so much money. Very well done.... to your OH too. I hope you are recovered from the physicality of the trek now you’re back. Like the positivity 👍 Whats next on the agenda 😊
Kip ... tried the hoop yet?
Clare ... hope you had a good weekend
Im having a chill out time here... too hot to be out and about during the day. I did go out for a walk last evening though... to the shops. Out for a meal the night before. Today ... washing...it’s great to get clothes dry quickly. The simple things are so good 😂
Hello all!The trek was
Its been lovely reading through and catching up on everyone’s news.
Jean glad you have arrived safely, I find jet lag a real pain, I love my sleep! I hope it settles soon and you have a lovely time with your OH and family.
Kip good to hear the aspirin trial is going ok so far. Interesting what the nurse at the wedding said about recovery after chemo. I guess it shouldn’t surprise us really considering what the treatment is plus surgery and rads!
Reddi, I’m pleased rads are going ok for you so far, fingers crossed it continues. I also hope you OH is sorted soon, I don’t envy you having to do the laundrette trudge!
Claire I was very emotional when my treatment finished. I cried so much, butbit did settle down fairly quickly. I hope your emotions are stabilising and good news no rads!
The trek was tough, emotionally and physically. There were several people there who had been affected by cancer either themselves or their families. Breast cancer seemed to be the most prevalent with two of the men having lost their wives to BC which I found very emotionally confronting. One of those poor ladies didn’t go to the doctor when she found a lump until it was too late, she has left a lovely husband and 10 year old daughter. It’s so sad. On a brighter note there was a lady who was a year clear and a husband whose wife was a year clear. OH and I raised about £20,000 and the trek itself raised about £250,000!!
Back home and back to reality. I intend to look forward from here on and try (very hard) to stay positive and not think of the ‘what if’s’
Here’s to positivity! X
Morning. Managed to get up early and go for a walk. Only did 1.1 miles and I was whacked afterwards....probably a combination of post viral and jet lag. All I wanted to do was sleep this morning. I also thought the warm weather might do the joints some good ... not!!! My knees are as cranky as ever, and the rest...definitely the little pill effect (+ age of course). It’s a bit too hot for me tbh. How are your aches today Kip? Clare and Reddi and Michelle .. hope you’re all good.
Hi Feenix glad you are having a lovely time... I haven't tried the fit of the hula hoop yet... Might end up like Winnie the Pooh stick in the hole.
Reddi... Cheek hooping would be so funny... I get what u mean about the trials I was wondering if I would be offered anything as Ipswich quite a small affair really. Hope your OHs bone is mending... And that you were right over which was broken!!!
Kip ... pleased you had a lovely time away in York.... lots of mmm things to eat at a wedding.Interesting picture comes to mind about your hoop 😂 I’ve yet to go out looking for a hoop here ... by the time I find one it’ll be time to go back home. I might just stick to walking up and down stairs and maybe get out early morning when it’s cool. Out last evening but was a bit tired .. need to eat more carbs for energy.
Reddi ... I’m not on a trial either. Hope your hubby is able to share the chores soon.
I’m hungry 😈
I'm so jealous of everyone's clinical trial options. So frustrating to be HER2+ on the one side (no MonarchE for me), and to be bilateral (no Add Aspirin). I am benefiting from the triallists who came before, however, particulalry the Text and Soft trials (the results of which are why I'm on Zoladex + AIs, rather than tamoxifen). Still, I'm such a science geek that I wanted to take part. 😞
Safe trials, @Feenix. ✈️
@Kip Your hula-fitting comment made me laugh aloud. Why isn't there a hula hoop emoji?!??!
@cdc Congrats on no rads! (In case I haven't said it already.) Separate from the relief of a more imminent transition out of active treatment, I think you're wise to keep that tool in your quiver, just in case. One thing re: MonarchE -- it seems as though they want people who have had no more than 12 weeks of endocrine therapy. I don't know when you started tamoxifen, but you might need to make a decision about starting the trial quite quickly based on that criterion. (It sounds as though you're healing incredibly well, which -- beyond the blood test results -- would be the other factor, from what I've read.)
RT no. 11 done and dusted. Still no burns or blisters, but my skin is getting more tender. And the fab bra I bought to get myself out of sports bras is all ruined with marker (didn't come out in the wash despite pre-treating). Bummers. Otherwise, recovered from the bisphosphonates. OH is back at the fracture clinic on Monday to see how his bone is healing. I'm hoping I can get in and out of RT swiftly and sneak in to his appointment -- really curious to see the X-ray, as he and I disagree about which bone is broken. (It was about 3am when we saw the X-ray, so we were both pretty blurry-eyed.) Picking up all the chores he was doing has been wearying -- the launderette hikes, especially -- so fingers crossed the bone is mending well and he can move from the cast to a splint.
One other anecdote: It was my mother-in-law's 87th birthday this week, so I joined my OH for his weekly visit down to South London -- the first time I've seen her since my diagnosis. (I would have gone at Christmas except I didn't want to traipse down there with my buddy, the drain bag.) She kept saying how well I looked -- but also how I'd gained weight, particularly in my face! I need some cheek hula-ing!
Hi all, sorry haven't replied sooner but been away in York, had fab time, beautiful weather and lovely wedding. Managed to put BC almost out of mind for a while. Interestingly I met a senior nurse and he was asking about my chemo etc and he said that it will take 2 years for it to truly leave the system and so should take things easy as it's still early days... Although that's a long while it reassured me that I'm not odd in not feeling like me yet.
Cdc..so glad you have not got to have the rads... And the end of treatment feeling is an odd one. The aspirin trial is to see whether taking a low dose of aspirin prevents reoccurence or slows it by thinning blood so that cells can't stick or something like that... Www.addaspirin has more info if you are interested. So far the aspirin is fine. The aches and pains are still there but easing slightly I think., funnily enough we had quite a firm bed in York and that seems to help😊
Feenix I hope you have a wonderful trip..ive eating so much on York not sure the hoop will fit😂😂
Reddi .. I'm taking glucosamine and chondrin already so hopefully that will help... Thanks for recommendation xxx
It’s great you are pleased with the results of your surgery Clare.... and no rads 👍. It definitely is a strange feeling when you know there’s no active hospital treatment to be had. I hope your recovery remains as smooth as possible ... you’re still early days really considering the surgery you’ve had. I too think of rads as something that’s at hand if needed in the future... but, touch wood, it will not be required. Hand luggage is the only way to travel... I do have access to washing facilities though 😊 BA is pretty good with allowances for hand luggage, certainly on long haul. I’m not so sure about short haul or other airlines like jet2 for example. I’ll have to do some research.
Kip ... hope you’re enjoying your time in York.... and not too achey.
Michelle ... hope you’re ok. I seem to think you’re away for 2 weeks...but I could be wrong.
Reddi ... hope the rads are not causing too much in the way of se’s. How’s your OH doing?
Linda ... hope you get a holiday sorted soon.
This is my third attempt to post. Great news CDC get you are pleased that the treatment has finished and that dads won't effect your boobs. I am in dire need of a holiday. I am hoping to see the surgeon either March or April as he said 2 months after rads but 3 months after rads in a letter. The May chemo thread are hoping to meet up soon. I have said I will tell KTK when we are meeting up and can let you know too Clare if you like. I think a date will be suggested and then whoever can make it can go as it will be hard to arrange for a lot of people.Anyway stay in touch Clare.x
Kip, that’s encouraging news to hear your friend is doing well now despite a blip or two and pleased to hear she’s happy with results. I’m delighted with my surgery and recovering well now I’m over my infection but feeling very emotional. I think it’s the end of active treatment feeling that others have mentioned. The decision as to whether to have rads had been playing on my mind. After talking with the clinical lead consultant at the Marsden yesterday i’ve decided against radiotherapy (Amazing lady who was amongst the original team who worked on finding the BRCA gene mutations). She had the consent form for me to sign if I wanted. However, for me it would have been more of a psychological reason but as I only had micromets in my sentinel lymph node and I’ve had all my breast tissue removed on both sides the current research suggests the chance of recurrence whether I have it or not is the same. There is also a feeling that there has been a tendency to over treat in the past. I also feel if I’m extremely unlucky and BC does come back I’ll be able to have radiotherapy as part of my arsenal if necessary.
Sorry to hear you’re still so achey Kip. I’m on Teva brand tamoxifen now and it seems to be suiting me better than the other I was on (not Wockhart but I forget the name). I do feel wiped out but have to remind myself I’m only 4 weeks post op. I’m interested to hear bout the trial. Can you remind me of the thinking behind adding aspirin? Now I know I won’t be having rads I will have my first blood test for the Monarch E trial (3rd phase) in a few weeks. I still don’t know whether I’ll be able to go ahead or not and whether I’ll be on the additional drug or not. In some ways I’ll be glad of the continued monitoring either way, Having said that I am looking forward to having a break from appointments beforehand. We are off to North Wales on Thursday for a few days for a bit of a break and to see my OHs older children who live near Ruthin.
Good you area over half way through your first lot of rads Reddi. The bisphoshonates SEs sound really grim tho’ especially the fever and headaches. How horrible. Just hope you don’t get a recurrence and your ear bones are ok. Are you managing to get much rest?
Jean, I’m impressed to hear that you’re only taking hand luggage with you! I do hope your cough doesn’t linger and you have a wonderful trip.
Reddi I would love to be 100% rid of the cough but I feel ok and have a supply of cough lozenges. Finishing off packing as we speak... only take hand luggage. Pleased your rads are going ok..hope the bophosphonate effect keeps at bay....and the se’s.
Lovely day, been out for a walk
Hope it’s a good day where you all are
@Feenix When do you leave? Soon, yes? Here's to being 100% recovered from your cold before your long haul. (I copied and pasted the arm exercises you shared a few weeks ago so that I have them for the future.)
I keep wondering where @Michelle21 is at the moment -- I hope it proves to be a splendid adventure for her. Does anyone know how long the trek is? Two weeks?
Rads continues to be fine. I'm halfway through the first 15, before the booster 5. Exhausted today, however -- the bisphosphonates really did hit me on Friday and Saturday. I even had a fever at one point, plus a weird headache that felt like someone punching me in the side of the skull; it threw me a little off balance on my walk home on Saturday evening. Thankfully, it hasn't recurred, so I'm hoping that means my ear bones are surviving fine. (But, after my experience of chemo, it would be like me to get a serious side effect that's not the serious side effect everybody worries about.)
@cdc Hoping you get to skip rads -- but if not, I highly recommend diprobase. (My hospital gives it to us.)
@Kip Are you on Ad-Cal as well as tamoxifen and your Add-Aspirin? If you aren't opposed to another pill in the routine, I wonder if it might be worth asking about taking glucosamine to help with joints. I know the research is mixed, but it seems the usual dose doesn't have adverse effects. I guess there's a question of how it might affect the trial, though.
Hi Kip.... still got fruity cough...pleased it doesn’t trouble me overnight. I’m about 75% ok by my reckoning. I’ve been out for short walks and pottering. Well done walking 5 miles... and remembering to take your aspirin. Good news about your friend too.
Wonder how Michelle is.
Clare ... hope your appointment goes ok today.
Reddi ... hope rads still going ok.
How are you today Feenix? Hope that troublesome cough is abating? Im remembering the aspin, 4 down so far and no SEs as yet. Still as stiff as a board though... walked 5 miles yesterday and really enjoyed it but felt like I had done a marathon by last night.
CDC - I heard from my friend in London who had the single DIEP recon a couple of weeks before you. She has had a couple of blips, got some necrosis and has a vaccuum type thingy ( sorry not sure of the technical term) to sort it and is now healing really well. She's very pleased with the outcome too, just needs to get strength back. She's also 2 years clear now too!
Hows' everyone else doing?
Feeling better today Kip although cough still troublesome at times ... still getting gunk up (tmi 😨 ). I’ve been a bit off with my exercises, although better today, and chest a bit sore with coughing..might be a bit ‘tighter’ than usual if you know what I mean (on mx side). I have been out to shops today...got more pills and potions 😊Hope you’ve had a good day. 👍 starting the aspirin. The one tablet I sometimes forget is the second calcichew.
CDC - lovely to hear from you and to see you got through the daft forum this time. At least the robot thingy has been disabled for a while.. thats good news. Glad to hear you are getting on well and feeling much better than last week. Also impressed you are not aching so much.. what brand of Tamox are you on? I was on Teva but this month I have had to have Wockhardt as they couldn't get hold of Teva as there is a shortage? Not sure if the aches are any worse but definately not better. Although as I have this stiff butt issue that could be unrelated to Tamox anyway and just an injury I have picked up. The other joint issues I think are due to the Tamox/menopause though... the hot flushes still persist.. as Shi said.. the duvet hokey cokey is in full flow!
I also received my initial 8 week run-in aspirin tablets this morning... so have taken the first one for the trial. 8 weeks of 100mg a day until they know I can tolerate it and then I get to go on the trial properly. Just another tablet to remember to take.. I'll need one of those dosset boxes soon.
Feenix - how are you feeling now?
Kip... the trouble with baking is that you’ve got to eat them while fresh 😈 Enjoy your special wine tonight ❣ I’m a walking advert for vicks vapour rub at the minute. The most exciting thing I’ll be doing today is a lovely steam inhalation 😂
Reddi ... hope you manage your baking although you do have a busy schedule.
Clare ... pleased things are going well, and you feel really good. 🤞 your inflammatory markers are coming down. Keep massaging. Good luck for your appointment on Monday...hope your decision is made easy for you.
I think another warm drink beckons... no biscuits in the house ... maybe that’s a good thing.
Lovely and sunny 🌞
Giving this another go. No robot issues today- hurrah!
Kip All this talk of baking is making me so hungry!
Jean, hope you are feeling brighter today, I was laid low all last week so I sympathise. Hope you’re fully recovered in time for your travels.
Reddi, hope the rads continue to go well and your Zoladex injection is not painful. Definitely worth getting the lipoma checked and hope all is ok.
Wonder how Michelle is getting on?
I had a follow up with my Plastic surgeon yesterday, He’s very happy with how I’m healing. I now have to do very firm massage, including pinching along the scar to prevent scar tissue forming,
He did give me more antibiotics and order more blood tests as my inflammation markers, indicative of infection, were very high -127 when my GP tested them last Thursday. Sure they’ll be fine as I feel great now. Also don’t seem to be having the aches I had now I’ve changed to a different brand of tamoxifen, I have a meeting to discuss whether to go ahead with radiotherapy on Monday, My Mum, OH and friend who has had BC all think I should go for it even if they say the benefit will be minimal. Will see what the specialist says before I decide.
Going to press ‘Post’ - 🤞🤞🤞
Hugs to everyone
Sorry to hear you're under the weather, but like you said better this week than next.. hopefully you'll be back to normal and ready for your trip. As for hooping, I have been doing it for about 3 years so well practised, just have to pop on some music and dance away. Isn't helping shift the pounds though.. that could be the viennese fingers I baked yesterday and then finished the chocolate too! Oh dear, I must take control... hubby bought me a bottle of my favourite red wine for Valentines.. funnily enough its called "Cupcake"... what else? So will be quaffing a bit of that tonight so that won't help either.. oh well only Valentines once a year I guess.
Reddi - did you get your baking done? Sounded delicious! I may bake some more orange and choc muffins... they were scrummy!
Just wondering... is it me or has the "I am a robot" thingy disappeared? I've posted three times now and not had to do it? Hooray if it has... but whats coming next?
Hello, all! Rads are going well so far -- only day 5 of 20, and just a tad tender. 👍🏼 Got 2.5 miles of walking in this morning, and trying to plan a bit of exercise this afternoon to help move off my post-chemo, post-Christmas pounds. Though still planning on baking some @Feenix & @Kip-inspired pumpkin bread (forgot to buy eggs yesterday).
GP this Friday for my first Zoladex injection out of hospital and I've got a tidy little list for him -- including getting a lipoma on my thigh biopsied (something I'd asked for 3 years ago but which got lost in paperwork and other priorities). Just want to be sure it's benign.
@Kip: Hurrah for good bloods. Go, Add-Aspirin!
Hoping @cdc that you are able to overcome the captcha etc. demons to share an update -- and hoping, too, that you're doing well.
Kip...pleased your bloods are all ok. Really good you’re still hooping... don’t know how you do 10 minutes off the trot. I can only do a minute max before I have to pick hoop up off the floor. After a great start to the week, I was so pleased I got through yoga, I’m now virally with cough and feeling rather rubbish. Good job it’s this week, not next... phew.
I wonder how Michelle is getting on....hope she’s enjoying trekking.
Clare ... how are you doing?
Reddi ... hope rads going ok.
everyone have a good day
Hi Holeinone... oh yes chemo brain.. thats a nightmare isn't it. No wonder you didn't take it all in... I still had to come away and research and read up again. I'm just waiting for the aspirin to come in the post and then I can start. Let me know if you opt in. Perhaps I'll need to do some revision for the next brain test in a year's time!!
Thank you for that information Kip.
I still have chemo brain so my brain function results might be iffy! I'm changing my mind back around to going on the trial so I may be a fellow guinea pig!
HoleinOne... welcome! I signed up for the Add Aspirin Trial yesterday. I was approached towards the end of my radiotherapy and was told I could take part and that they would contact me after Christmas. They actually didn't so I chased them up last week and lucky I did as the closing date was supposed to be end of Jan but they have squeezed me in. This could just the closing date for Ipswich so don't panic. Anyway, the sign up was quite straight forward, form filling and general questions about past health. Then I had to undertake a short memory test.. similar to the test for dementia I think. You don't have to take part they are just interested in measuring brain function over time with aspirin. It was quite easy, she read a list of words, you repeat them, then you have to repeat some numbers, then say them backwards, name 11 things beginning with F, a few math style simple questions, what day of the week is it etc. Then got weighed and height measured and then had a blood test (liver, kidney and bone function). I'm waiting on the results of the tests today and then should be good to go. You initially get put on an 8 week tester trial, so you get given 100mg of aspirin every day for 8 weeks to see if you can (a) tolerate it and (b) remember to take it. Once the 8 weeks are up you see the hospital and they you are entered into the trial proper. The computer generates whether you get placebo, 100mg or 300mg of aspirin. You can come off the trial at any time you want. Here's a link to the information they gave me. www.addaspirintrial.org.
I ummed and arrged about it for a while but as Reddi said below, whats to lose? You get extra monitoring throughout the year too, I think they like to do a blood test every 3 months for the first year.. can't quite remember. Hope that helps.
Feenix - well done with the Yoga, I still haven't been yet. Just walking is tiring at the moment. did hoop this morning though.
CDC - hope you get onto the forum again... I log in before I post and then just click the Im not a robot box before posting. Usually I am on a pc though, although I do use my phone app too?
Reddi - thats for the pep talk... yeah feeling ok about the trial.. just waiting for a phone call to say the bloods were ok. always panic when they have something to check.. .poor old veins were not happy about giving blood either. As I only have the one arm to choose from it didn't help. The chemo has certainly affected the veins in the good arm. Luckily they had an ace nurse on the ward so she got it ok. You do have to be on the ball though, she must have asked twice if she could try the other arm and so did the initial nurse (even though they both work in oncology!!).
Ive not found the new site problematic Kip. Seems ok on an iPad. I don’t mind things changing...it’s always interesting trying new stuff out ... like getting a new gadget. As long as I can meet the robot challenge I’m ok 🙂 I don’t know why but I expected the trial to be over a year or two...duh. 5 years seems to be the minimum for anything bc related on the trial front. I did my first yoga session yesterday. Really good. Pleased I could do it although next week might be a different story 😂. I certainly knew I’d done a workout !!! Must remember to eat something light an hour before so I have a bit of energy in reserve. I’m back to the shops today looking for a reasonably sized cross body bag. I need to get one soon 😟
Reddi ... ‘Tis the season for sharing viruses.... hope it doesn’t develop into a full blown event 😷 🤧 🥵 ... hope your OH is doing ok. 👍 for today’s rad session.
Clare .. you’re not having much luck posting replies. As Reddi says I log on before posting. Sometimes I can’t tell what’s in the robot checking boxes so I have been rejected on a couple of occasions 😂
@cdc I find that I have to log in before typing -- even if it seems I am already logged in, since the time-out function inevitably boots me and the not-robot thing won't override that. Mostly, though, I have given up on posting via mobile and copy my post to Word before attempting to post via computer. Ridiculous given the vendor was supposed to deliver a mobile friendly site!
I'm from November chemo thread and daisydi pointed me here as I have been asked to go on Add Aspirin trial as I had my latest chemo, I just started a thread about it elsewhere for feedback and advice.
I was in a bit of chemo fog when the nurse was explaining it to me and must admit I'm having second thoughts, if anyone has any info or first hand experience, I'd be happy to hear it.
@Kip I'm so glad you got yourself in to Add-Aspirin! One thing to keep in mind about the trial -- if the evidence is clearly and hugely supportive for adding aspirin, I believe they'll publish and switch all placebo participants to the protocol asap. And if you're assigned placebo, you'll be doing the same thing you'd be doing anyway, since you don't take aspirin regularly, right? So it feels like a win-win to me, since the aspirin dose is pretty low (low chance of SEs) and I suspect you will indeed get extra monitoring. But do ask about what side effects you might get, and how to report them. 💊🏆
@Feenix Your baking is an inspiration. 🧁 I keep meaning to make pumpkin bread, but been too busy with work projects. Maybe tomorrow evening it will finally happen.
Day 3 of radiotherapy done; just 17 to go! 😎😎😎 No SEs yet, but I'm not expecting any until late this week or early next. As I mentioned elsewhere (and @Feenix saw), I do expect some burning based on my intro session -- I use 50+ SPF sunblock whenever I'm out in the sun (not just chemo!), because I burn very easily, and the radiographers said those who burn easily seem more likely to get burns. We'll see. I've got the diprobase they supplied as well as aloe vera gel and Udderly; I'm airing out as much as I can given the chilly weather; and I'm drinking lots of water to help with fatige. Only worry now is that my OH has developed a bad chest/head cold, and I have now got the sore throat he started with. We'll see how well RT goes if I'm hacking and sneezing like he is. 🤧 Especially as the end of this week will be busy -- Thursday: RT + Herceptin injection + Zometa (bisphosphonate) infusion; Friday: Zoladex (ovaries) injection + RT + starting AIs (exemestane).
Hi Feenix, oh dear the scales... I've avoided mine this week.. lemon drizzle is a naughty thing! I had forgotten SallyG said she was leaving..shame, but she may come back now its sorted itself... I think I've got used to the new forum site, keep forgetting to click that I'm not a robot though!
Aspirin trial is for 5 years I believe, either placebo, 100mg or 200mg. I've not really ever taken aspirin so not sure what to expect. You have a low dose for 8 weeks to begin and then they check you can (a) tolerate it and (b) remember to take it every day and then you get ramondly picked by a computer as to what you get. I think I have some extra blood tests during the year and maybe and extra mammogram.. will find out for sure later.
Sun out here too but have electrician in and have had no power so couldn't do the washing.. or any baking thankfully!
It was a big mistake baking... shouldn’t have stepped on the scales this morning...yikes. Anyway I’ve got over a week to repair some of the damage before I fly... don’t want to literally roll off the plane 😂
Well done for doing the aspirin trial.... how long are you on it? The only time I take aspirin is when I fly. I’ve been lucky to get the same brand of letrozole after the first month of starting it.
Sally G said she was leaving the site... that was when it changed recently. I’ve come across her elsewhere so hopefully she is doing ok. I do hope she’s getting sorted with everything. Perhaps she’ll pop back on at some point as it would be good to know she’s doing well.
Hopefully Michelle is enjoying her trekking adventure.
Clare ... hope you’re on the mend.
Hope everyone else is having a good day.
Lovely and sunny here...washing in...cuppa made ... no scones etc but fruit is beckoning 😇
Cheese scones AND rock cakes.. ooh Feenix you devil! and Michelle must be well away now... sounds like a crazy last few hours before departing but isn't it always.
CDC - hope you are feeling ok.
KTK - how you doing?
SallyG - whats up?
Georgie Gee - are you feeling any better now, haven't heard from you in a while.
Everyone a bit quiet at the moment... taking that to mean everyone is moving on and getting back into life... excellent!
Im still stiff as a board, started taking glucosamine and chondrin on Friday so will see if that helps, also had to switch brands of Tamoxifen on Friday too as they can't get the one I usually have, so will monitor that too. I'm off to hospital this afternoon to sign up for the Add Aspirin trial. I nearly missed out as they forgot to ring me after Christmas and you needed to be signed up before end of Jan.. but they called the trial people and they agreed i could participate as long as I signed up before 12 Feb... eek just got in... still feeling a bit unsure.. just scared they'll discover its the new wonder drug for preventing reoccurence and I will have been on the placebo.. but its the only way these things get discovered isn't it.. so hopefully I can help future ladies/men with this horrible thing!