Wise words Kip, it sounds like the Hope course is really working for you which is excellent. Let us know about the CD.
I have a bit of a dilemma. I had a letter today with an appointment for a mammogram on 12th April (is that the same date as you Kip?) I was diagnosed on 29th March so this mammogram appt is obviously based on that however I have been told by my onc and bc nurse that my mammogram will be 1 year from surgery date, which is Aug 16th.
So do I call the hospital and ask why I have this appt and see if they will move it to Aug or do I just stick with this date?
I’m undecided about this because at the moment I feel relatively ‘safe’ because I’ve not long finished rads and am still having herceptin until May. However I’m thinking if I have the mammogram in April and I continue to feel ‘safe’ May, June, July before I start to worry I will only have to wait until April 2020 for the next one as opposed to August 2020. Sorry if this is a bit garbled but I just wanted to ask everyone’s opinion, and is everyone else having their first mammogram 1 year from diagnosis or surgery?
As always, thanks for listening xx
Brilliant to hear your Mum is doing ok Reddi and that you have now completed Rads!! As Michelle said, its a strange feeling isn't it but a good one once you get your head around it all. I hope the Skype goes well, it will be good just to see her won't it.
I had Week 2 of the Hope course yesterday. Went really well. Yesterday's topics were anxiety, Mindfullness, breathing , being kind to yourself and goal setting/positivity again. Its all about giving you some tools to deal with things, breaking them down into manageable chunks etc, deciding what you can change and trying to accept what you can't. We did an exercise called "the Raisin meditation" which promotes mindfullness. You had to hold a raisin in your hand and then listen to the speaker as she talked you through the process. Firstly, look at the raisin, study its colour, feel it, lift it up, feels its weight, think about how you picked it up, bring it to your nose, sniff it, what does it smell like, put it on your tongue, feel what it feels like, chew it, taste it, swallow it etc.... sounds crazy but wow that raisin tasted good!! Now got to be mindful about the every day things... just been to the shop, took me ages as I was so busy being mindful of everything around me The speaker has such a relaxing voice that when we did some deep breathing exercises I think we all nearly fell asleep! She has given us all a CD to listen to so hoping that may help a bit. Now need to buy raisins as really fancy then .. not sure it was good for my waistline but a nice way to spend a couple of hours. Next week I have to take in my hula hoop for a demo.. me and my big mouth ha ha.
So in the spirit of HOPE... (and to show I was listening!!)
"Show yourself some kindness and compassion and treat yourself as you would treat others"..
That’s great news about your mum Reddi, it must be such a relief to you and your family. Also congratulations on finishing rads. I’m also on herceptin, it’s a strange feeling isn’t it? The big treatments done but still going in every 3 weeks for jab. Most importantly it’s another step closer to moving on x
Jean, Welcome Home! I hope you get a good nights sleep and feel fresh tomorrow morn x
Finally have an update -- and it is good: my mom seems to be stabilizing. Body temperature and blood pressure are up in response to meds, and blood cultures aren't growing anything yet, so it looks like she doesn't have sepsis. Hurrah! She has a fractured rib and a compressed vertebra (lumbar region, don't know which one), one or both of which may have been the result of too-energetic assistance on the part of a carer, as well as pneumonia, and possibly also the flu. The rib will have to heal on its own; they may be able to do some fairly simple repair work on the vertebra. And right now, they're aiming to discharge her home -- though when is still to be settled, and depends on what sort of care plan can be put together with the social worker. I haven't been able to speak with her yet, as the hospital ventilator has exacrebated a sore throat, so she's mostly communicating by writing notes or mouthing things; we're going to try to skype tomorrow, with me doing all the talking. However, I did get a photo by email today, and she looks reasonably well given everything. I could make out her BP on the monitor (perfect) and the fact that the first thing she asked of my dad and sister was how their cat is doing. 🐈 Which is a good sign -- and a great relief. 😺
So OH and I did go out for dinner tonight, and I did a little bell-ringing in my head.
Kip... hope the exercises do the trick for the achey butt... you’ve definitely got a full exercise programme going but I guess it’s becoming routine.
Michelle ... lingerie night sounds really good... I’ll keep a lookout.
Clare ... hope you’re having good days.
Im cream crackered ... no sleep on long flight or trains so hitting the pit...
Reddi...Just got back home this evening so popped on and saw about your mam. I hope there’s some positive news from her tests and that she gets treatment accordingly. I do hope she improves soon and you get to talk to her. Hope your sister has had a safe journey. Sending hugs xx
How disappointing Kip that your physio didn’t know about the affects of chemo and Tamoxifen. I suppose they can’t know about all medication, hopefully the exercises will help you. I know what you mean regarding the morning regime of massage and exercises, there’s a lot to do isnt there?!
I went to a great event last night, it was a lingerie night organised by BCC. It was so informative, obviously there was a lot more info for those that have had a mastectomy, there was also a lady modelling the bras who had had a DIEP. I’ve only had a lumpectomy but with rads my right side is a different shape and a lot firmer than my other side sonit was good to hear all the fitting tips. They had representatives from Truelife, Amonena, Liberty and knitted knockers. If any of you get the opportunity to go I would recommend it whatever your breast ‘status!’ X
Oh Reddi, sending you a big big hug via the airwaves. What a difficult day for you. Hope you get some news soon.
Oh no Reddi
What a worrying time for you and your family.
I do so hope your sister gets there soon and can update you. Also that once the results are back, your Mum gets the treatment she needs and you get a chance to speak to her on the phone. I’m thinking of you and sending hugs.
Hope your last rads go smoothly and there will be reason to celebrate both the end of the rads and your Mum getting better very soon.
Well, no bell ringing or other celebrating for me tomorrow -- my mother was admitted to hospital today, and until my sister gets there (she's on her way to the airport now), I think it's going to be hard to glean just how critically ill she is. When her carer arrived this morning, she was not very responsive, and on admission her body temperature was about 33.8C. Having gone through chemo, many of us know how dangerously low that is. She has some slight pneumonia -- which is also dangerous for her, as she is on a ventilator due to muscular dystrophy -- and seems to have a fractured rib or fractured vertebra or compression injury of the spine or something (neither the carer nor my father, who has some dementia and is clearly shaken based on my phone call with him this afternoon, were able to follow the full contours of the conversation with the doctors). Now waiting for my mom to return from tests to CCU in hopes that there might be an update, or a chance of speaking with her via phone. I've been worried about something like this happening for the past few months, based on my sister's reports and skyping with my parents. An emoji doesn't feel right, but...
Good to hear your last Rad sessions is tomorrow Reddi.. bell or no bell it's a big relief, and good the skin is holding up. Mine got a bit sore about a week after finishing but kept the cream slapped on and it was ok very quickly.
Yesterday I had my physio appointment for the achey butt pain... well actually when he asked what the problem was I didn't know which ache to tell him about. Unfortunately he didn't have any knowledge of chemo or Tamoxifen, in fact had to Google Tamoxifen to see what it was so wasn't able to advise whether this could be the cause. He did have a good old prod and pulled various bits and bobs about to see what was what and he thinks I have damage to my high hamstring. This confused him somewhat as he said its not that usual but it can happen. He also thought it could be related to my back but as he pressed everywhere and it didn't cause any pain probably ruled that out. I have to do hip curls on the poor side every day for 3 weeks then go back to see if it helps. When assessing me he did find I have very weak glutes and hips which doesn't help. My guess is that chemo and Tamoxifen have all paid their price and I've damaged something trying to keep up with the walking etc. Its definately not as bad as it first was (although sore today where he prodded) so I'll give the exercise a try. He advised swimming was fine as long as it doesn't cause pain but not to take up Yoga yet as stretching is the worst thing for hamstring issues, they need strengthening instead. So cant go to Yoga with OH and son just yet.
Quite unexpectedly I found just telling him my cancer journey emotional and had to fight back tears, just seemed so surreal and not sure he knew quite what to say either.. just said... "do you have any other health issues".. crikey that one is enough for anybody!
So this morning I've had a hoola hoop, hip curls, arm stretches and lymphodema massage/exercises... going to have to get up earlier in the morning I think! Good job I work from home and don't have to travel anywhere!
Hi, all! Sorry for the slow reply to all the amazing photos -- particularly when I was hounding for them! Just trying to get myself back into a work routine, and realized that I can easily get waylaid in here when I have pressing deadlines...
@Michelle21 Your photos are spectacular -- the bridge of prayer flags, in particular. I'm not a religious person, but I've always found myself drawn to the ritual of tying flags in the wind, to bless the surrounding landscape and living beings. I especially love the translation of the name for some of the Tibetan flags, lung-ta -- "wind horse." (Is it the same or similar in Nepalese?) Maybe they also remind me of some of the rituals I encountered during a stay with a Lakota family at Pine Ridge, in South Dakota, when I was finishing university, a visit that came at a time of a lot of soul-searching. But I think my favorite photo of yours is the one of the toilet facilities. It really gives a sense of the trek.
@Feenix You're coming home so soon! Home-cooked food sounds marvellous -- a fine accompaniment to your healthier fare. I'm making mental photographs for myself. I'm so glad that you're finally feeling recovered, too.
@Kip Scrunchie for the win! You are a swimming, hooping, flossing fitness inspiration.
@cdc How are you these days? During my radiotherapy review meeting today, I teared up. I can't even remember what triggered it -- I think it was when she asked if I had "any other worries" after going through the basic contours of the holistic needs assessment, and I mentioned losing the support system of frequent appointments. It is a big change.
Last rads for me is Thursday, 7 March. I don't think there is a bell on our unit, but in a way I'm glad: since I've got to go up to the chemo day unit for my Herceptin injection about 2.5 hours after I finish rads (too short a gap to go home), it would feel a tad bit farcical to me to ring a bell at that particular moment. I'll find another way to mark the occasion in the evening -- almost certainly involving 🥂. Apparently, my skin is holding up remarkably well, despite how pink it is and how tender it feels. I've had some swelling and two pinprick blisters, which healed quickly over the weekend, but no other wounds thus far. 🤞
I've now got my trip to the US booked (thanks to my sister) -- heading over right after Easter and returning after the Early May bank holiday, squeezed between Herceptin and Zoladex injections. Of course, today I found out that the Moving Forward course is held at my hospital in May and November, and the first session of the next course is 2 May -- when I'll still be visiting my parents. I suspect I won't be allowed to crash into the second session, but boy, I'm going to try.
Glad you both like the photo’s! Yes the toilets left a lot to be desired! Kip nothing I’ve done outshines your swim, we all have our own targets and I’m pleased you went for your swim! The main thing is we set set ourselves goals and achieve them whether big or small. Anything that makes us feel better is a good thing. A few weeks ago I was chatting with someone I know who has been through the mill with cancer (not BC) and she is well now. She said to me to harness this feeling and make the most of life. I think the further away I get from it all this should be easier to do.
Re fundraising we were lucky in that OH’s work organised 2 big events but somethings I have thought to do if China goes ahead are an afternoon tea (hire a church/community hall and charge £15 per person), organise a quiz night, someone I spoke to on the trek had an auction night where people bid on items donated by companies. She said she emailed hundreds of companies and had lots of things donated to auction off. I will let you know if I have any other ideas.
Jean those photo’s look lovely, What a shame your trip is coming to an end already. But it seems like you have enjoyed yourself and that it has been good for you. Lucky you to be going back again later in the year, how many times a year do you normally visit? Does your OH miss his family a lot? Are they all in India or does he have some in the UK? I’m very envious of the temperature there, it’s not so warm here!
I’m so impressed by you and Kip learning to floss!!! I have no coordination and any attempts of mine have been totally useless! Your car analogy is good, I feel as though I’ve had an mot so hopefully I’m good for a few more years!
Claire how are you feeling now?
Reddi as Kip says ring that bell loud!
Ive just said goodbye to a friend who came up to stay the night. It was lovely seeing her but now I’ve waved goodbye the house feels empty and I’m out of my routine. This is one of those times it would be easy for me to drift about and let my mind wonder. So I’m going to give myself a shake and get busy, try and keep those thoughts at bay.
Have a safe trip home Jean and everyone else have a good day, keep hooping and flossing! Xx
Morning Feenix (or evening possibly where you are?), thanks for the photos, all looks great.. even the health photo made me want to eat.. although not healthy food unfortunately. You also made me laugh about learning to floss.. funnily enough I did the same thing whilst in York. Had the help of an 11 year old so that I could impress my daughter when I got home.. not that she was very impressed.. she thought it was very embarrassing.. so I do it a lot to annoy her!! I like your car analogy...my chassis is definately in need of some work.. I'm off to the first physio session this afternoon to see if that helps the creaks and groans. I think they are slowly getting better, still very stiff when I get up, every joint and the ache which shoots up to the buttock is there but not as bad as before, I'm trying to up the exercise slowly to see if it helps, been hooping every morning and walking the dog too. My swimming costume is from Asda and its post op one but its a one piece with a little skirt and has the pocket for the KK. I used the KK that my mum made and filled it with a shower scrunchy so that when you get out of the pool you can wring it out and it doesn't absorb the water... must say its bloomin' marvellous! Did worry it might get loose and float to the surface of the pool.. but it all stayed put in the pocket and nobody would know!
Hope you enjoy the end of your stay and have a safe journey home again. The sun is shining here although a bit fresh.. you'll feel the difference!!
CDC - how are you feeling? Hope the tears are drying, but if they aren't.. go with it.. good to let it out. I've had a couple of wobbly days recently but trying to ride them out in hope of better to come. Just want April over and done with and the mammogram done. Also have a smear test booked for next week as had to cancel that when having chemo so now having that to worry over... its like having a full MOT!!
Reddi - hopefully you are having the last rads today? Or tomorrow maybe. Ring that bell loud and proud if you can.. if not strutt out of there like John Travolta!
Michelle .... Fab pics of your trek experience... definitely wild camping. Toilet facilities bring to mind going to Knebworth in the 70’s (LED Zep) and loos were au naturalle... a trench with a bench and sack cloth for doors over each cubicle. Of course you could see through said door .. ‘twas fun. You and OH must be really chuffed with what you’ve achieved. Walking on the Great Wall of China will be a great experience ... it’s quite steep in parts and is a good climb. Like your mindset since getting back. Good luck for your half marathon. The food pic was Channa Batura... huge poori with chickpea curry...the rest of the time is mainly home cooking.
Kip ... the Hope course sounds really good. Well done for going swimming and achieving your goal. Did you wear your Asda tankini top? The mud challenge in June sounds interesting.... football match is a good idea too...you’ll get plenty of fund raising advice from Michelle I’m sure. The only things that come to mind are raffles, car boot sales. In lieu of not having a hoop here I taught myself how to do the flossing dance ... gets the hips moving nicely, and the arms too 😂
Clare ... I applied for the moving forward course myself. My bcn was off sick so I searched on bc site, found out when the course was on locally and applied online. Your emotions are natural.... it’s all catching up and as you say the enormity of what you’ve been through.... a big emotional release valve. Plus you’re still bogged down with complaining about your complaint handling ☹️
Im ok with FF and I guess the clues in the title ... flat 😂 They’re up front in the guidelines and if it’s not helpful no problem in unfriending. I do know they are going to have a forum platform like this so it’ll be easier to be anonymous and ask questions/chat about mx and no recon. I’m not keen on the Facebook format ... ive gone off Facebook big time since before my diagnosis. I actually have a separate FB account for the closed FF group. I’ve not made myself known to SallyG just because it’s a different ‘place’ and not like being on here. I only tend to dip in now and then.
I know what you mean about others being/getting diagnosed with 2° and how difficult that can be. In an odd way it has helped me knowing that they are living their lives in spite of it all. Maybe being a nurse for decades helps .. and having a pragmatic outlook.... plus my mental attitude has improved since last year. Things do pop into my mind now and then, mainly about 2°, the fear of the unknown, but I talk myself through it and put that thought back in the box and out of the way.
I still like the car analogy.... when I was young I didnt need any work doing, sailed through an mot, now I’m needing major work ... but I’m still chugging along although my body is no longer as it used to be and it creaks a lot more... I’m not ready for the scrap heap yet...remember lasses I’m an older model than you too 😂
Reddi ... Is it your last rads tomorrow, or Thursday? Do you get to ring a bell? 🔔 🔔 🔔I haven’t got any more food photos....I’ll find something else. It’s still in the lower 30’s here, in the 20’s overnight. I’m pleased to say I started to feel better over the weekend ...I’ve been out for longer walks and went to the shops last evening with my sis in law. Stopped off for Indian coffee and vada but didn’t take a pic. It’s typical I’m feeling ok now and am getting ready to head back home ... washing today and packing tomorrow. Anyway, will be back over later in the year...when it’s cooler 😊
Omg Michelle those photos are awesome!! That's so amazing, not sure of the toilet facilities tho 😀. Next a half marathon and then the Great Wall of China... You are bloomin' amazing.. Puts my little swim to shame but I am hoping to take part in the mud challenge race for life along with my daughter, its in June and my OH is arranging a charity football tournament to raise money for the breast clinic's new unit t Ipswich hospital so I may need some tips on raising money.
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.