How have you been today Kip? I can imagine it being an emotional time. I’m very interested to hear of the trial. I have a huge list of side-effects associated with mine so unsure of whether to go for it or not. I like the idea of being more closely monitored if I’m honest. Monarch E is an open label trial so I would know whether I would be having the additional drugs or just tamoxifen,
Thinking of you.
Hope everyone is faring well xxx
Yes, I came across this the other day on some US sites (often the best place to look for new ideas).
Thanks for the congrats everyone. Woken up feeling very emotional and a bit adrift but hoping to fend off the worry gremlins until at least after Christmas.
CDC - Good news about the operation, glad you are feeling happier with the nice staff you are meeting, makes such a difference too. Unbelievable the amount of ladies you have met with occult diagnosies. Your option of the trial sounds interesting too, I have been asked to particpate in one called "Add Aspirin". Its for early stage cancer patients to add potentially either 200mg, 100mg or placebo daily to assess whether there is proof that taking this helps to stop reoccurence or lengthen the time before it happens. I have some reading to do before deciding. Anyone heard of this?
Oh well done and congratulations to you, fab xmas present and I am ringing the bell on here for you tonight
I;ve done it and rung the bell, very emotional! Smiling all over my face today...
Good luck to all still on the journey.. love to all
Great you’re booked onto a course Kip. Good you can try out other therapies too. I’ve not booked up for anything else... yet. Have you had chance to look at the dvd? Any useful hints and tips?
Will be thinking of you ringing that bell with your OH and children there ... very emotional.
thanks CDC - I'll be ringing it loud and proud and as have my children and hubby coming too so its a real family affair.
Ooh i really fancy a tunnocks now. I have booked the moving on course today cant get a place until feb tho. Also may sign up for reki and reflexology too. I was also given a dvd for exercises for vdeast cancer patients post op to increase movement and to prevent lymphoedema so ill ill a look and see what thats about. Anythings worth a try.
Well..at least you know Kip now someone has eyeballed your arm/axilla. And you know how to massage. I haven’t done any cording massage in over a week now but might try it today. My thumb was a bit twangy when stretching this morning so Ill have to be good and exercise, exercise and more exercise as don’t want any more probs. Good you know what your follow ups will be... plus you’ll be having an uss..excellent. Definitely get yourself on a moving forward course Kip. They’re really beneficial. I’m meeting bcn on Thursday about follow up. I’ve already met someone from the follow on team at the moving forward course I did.
So fantastic you’re nearly there... one more zap after today then ring that bell 🔔
Well done on hooping. I might try it next week...don’t want to twang anything just yet. Haven’t a biscuit in the house but have had a Tunnocks teacake... hadn’t had one for years and they caught my eye when shopping 😊
have a good day... keep stretching
Hello Feenix, well finally its official... I have cording! Got to see the radiotherapy nurse yesterday for a general catch up and she took a look and yes its cording, from wrist to armpit. She showed me how to gently massage it and confirmed I am on the list for an appintment with lymphodema clinic but haven't got an appointment as yet. I can actually see the cording looking like a vein running along the inside of my wrist. And the lumpy bit under my armpit I thought was a seroma is scarring! So stuck with that for life I guess. She was very nice though and explained what happens once I've finished treatment. I'll have a follow up appointment in about 6 weeks with radio to see how I got on and then she says I'll get a mammograme and an ultrasound around the 1yr anniversary of diagnosis (so April/May) and then be routinly monitored. I also have an open door to radio, ONcs and breast clinic for whenever I want which is nice. I told her about the fear of moving forwrad and she said to try to get on the Hope course and to take up some of the therapies they offer at the hospital as its very common to feel that way and many many people do. As for the aches and pains, still as stiff as a board but she thinks its chemo hangover plus the Tamoxifen but that it should ease over time.
Its the penultimate session of Rads today...cant' wait for a rest from it all. Keep up with the stretches Jean, my arm is so stiff if I miss one day, but did manage to hoop this morning... might just about have burned off 1 of the many biscuits I ate last night!
Kip ... so ironic that the radiotherapy table is the only comfortable place for you.. but good that you get some relief from your aches and pains. I can empathise with the seizing up if sitting for too long but I put that down to age (I’m older than you) and the added letrozole effect. I remember meeting a friend about a month after starting the Letrozole. After having lunch I could hardly get up and hobbled until I ‘got going’. It’s definitely improved since then. Although still sore (post diving out of car last week) I’ve stopped my night time codeine and I’ve only had a dose of para and brufen this evening. Starting to feel like me again. I’ve also started doing week 2 bc exercises ... it’s like being post op again with really tight chest/side/axilla. Thought my upper arm was a bit ‘bigger’ today but hoping exercising and not sleeping so upright might help...I’ve appt with Bcn Thursday so will run it past her in case I need to see lymph nurse. I’ve also put on a huge amount of weight so need to push myself to get rid of it. Went out for my first real walk...I was slow and really cold. Going to get some thermals 😃
Hows your seroma and cording Kip?
Michelle ... how are you? How’s the training going?
Clare ... see you got a reply to your complaint. Saying it was disappointing is a gross understatement but I’m sure you will persevere with it ... wish you didn’t have to though ... that they had got it ‘right’. So pleased you’ve got a date for your surgery too. Not long to go really. Hope your scan results make it easy deciding which op to go for. How are you feeling?
sending hugs to all
How are you we all today?
Michelle how are you fairing on the different brand of Tamoxifen - still ok? I feel the same as the other one so far, hots sweats etc but my achey body is awful. It was improving last week but yesterday every single joint in my body ached.. from my toes to my fingers. Its awful and I don't know if its the docetaxol chemo hangover (as mentioned by my Onc. nurse), the Tamoxifen, the menopause or all three plus a dose of radio stiffness too? Its dreadful, I could have cried yesterday. This morning my knees ache and so does my lower back but a bit better than yesterday but I get so stiff if I sit still for too long. Anyone else suffering like this? Ironically the only place i can find to lay down and not be in pain is in the bloomin' radiotherapy machine.. for some reason that horrible bed/board really stretches me out and I have no pain! The radiographer found that hilarious and said I am the first person he's met who finds it comfortable. Looking forward to session 13 today just for the stretch. So far that's going fine, no burning as yet.. I finish on Wednesday so hoping nothing major happens to my skin over christmas.
Feenix - how are you today, managing better sleep?
I googled Maggies last night and it said beginning of 2019. I was at Velindre last week and thought the same as couldn't see anything. It would be good to have one/or something so close to home though as I feel we don't have much in our area as far as support goes.It would be lovely to meet up. If I'm honest I've never pm'd before so not entirely sure I'd do it correctly! You can pm me by all means.
Yes I too am at Velindre. I finished my radiotherapy at the end of February. I was offered to be referred by the radiotherapy team too but I thought I would wait. I wish I hadn't. I seemed to have slipped through so many nets since. Hopefully now though I will have things sorted by/in the new year.
Would love an Epsom salt soak Kip but worried I wouldn’t get out 🛀 🚒 😂 Warm shower has to suffice. Sounds as though your aches and pains are still problematic. Not long to go before you’re ringing that bell.
Lovely surprise for you Michelle, having your daughter home sooner than expected. Pleased your skin has greatly improved and that your counselling is under way, and sounds very helpful. I’m sure you could request to have the supervisor. Congratulations on your fund raising event ... excellent amount raised. I hope you get running tomorrow although it’s going to be nithering ... brrrr
Wrap up warm gals
Oh Jean that must be a nightmare sleeping sitting up.. you'll end up with a stiff back like me. Can you have a soak in the bath.. good ole Epsom salts?
Hi Kip ... good your arm is a bit better. Whatever you’re doing is working. I’m still trying to sleep upright ... need superglue on bum tho. I take codeine at night which helps a bit. I’m better at managing movement without making things worse. It is gradually improving. I’ve noticed I’m expanding/weight going up ... good job there’s no biscuits around. Shame I can’t hoop ☹️
have a good weekend
Hi Jean, sounds like you are having a week of it. Must be difficult to keep up the arm exercises when you are in pain. Its bad enough without extra things to deal with. How are you sleeping? Ironically my arm feels a bit better today, still haven't seen anyone so will still continue with that (whenever the appointment comes).
Hope you can get some pain free rest today.
Hi CDC, yes they did call me before I left so I didn't waste a journey thankfully. They have 2 machines and both out of order yesterday. I know I wish somebody would just look at my arm and tell what to do with it, I keep massaging and stretching but am worried I'm doing it wrong. I should finish my rads on 19th December so all done for Christmas, although expecting the tiredness to kick in once its done. So far feeling fine. Have you started your Tamoxifen yet? If so how's it going. I started a new pack yesteray (2 month) and its a different brand so bit worried it may make me feel different.. will have to wait and see.
Oh and managed to update the profile picture... its a bit of a cheese one.. I hate my photo being taken!
It’s incredible nobody has actually looked at your arm Kip! Good you are being referred to the lymphodema clinic. A friend of mine has a specialist nurse who comes once a month to do a therapeutic massage. Did you find out about the broken machine before travelling all that way for radio yesterday? Hope not! Annouomgro go in on a Sat but I’d probably do the same. Will you finish next Friday? Hope you’ll get a good break over Christmas.
Hope you’re getting better after your nasty fall Jean. Xx
Morning, now being referred to the lymphodema clinic for some physio and help with my posible cording. Still nobody has actually looked at my arm, hope I don't have to wait too long for an appointment.
Didn't get the radio therapy yesterday as the machine was broken so have to go on Saturday. They did offer to add it on to the end of my treatments but I don't want any more days disrupted next week as have so much to do.
Feenix - how are you now? Still sore?
Well no further forward with the arm issues. Asked at radio yesterday and the lady I saw was very short with me (I could see in her face she was thinking "why would we be looking at it for you") and she said they were too busy to look and that I should just gently massage it and if it doesn't improve self refer to physio. No luck there then! I don't know what type of massage and how hard etc to be doing, and whether its cording or not. So this morning I called my BCN again, she was off but spoken to another who has said I may get an appointment quicker via the physio department rather than the breast clinic so have to call them in a minute to see what they say... more chasing but I really want sometone to take a look.
Michelle interesting you said your arm aches, I've been messaging someone who has just finished (well about 2 weeks ago) and she said her arm aches and she couldn't work out why either. I still ache all over so another arm won't make much difference to me.
CDC - Sounds like your counsellor is doing you the world of good, deffinately think thats on the cards for me after xmas. Its my daughters birthday today and I so wished I could give her the ultimate present, i.e.. the old me back... bless her.
Anyway ladies, Rads No. 10 today so 5 more to go... so far so good, no soreness as yet.
I've read through some of the threads on here and I think we may have had treatment at the same Cancer hospital. I was just wondering have you contacted them again regarding Counselling etc? I only contacted them a couple of weeks ago as I heard other ladies were having advice/help from there. I spoke to some lovely people there and they are arranging one to one Couselling and other things for me. I was just wondering if it would help at all. I took it upon myself to ring them rather than being referred by a professional.
Oh dear Feenix, sounds so painful. I have finally spoken to my BC nurse today about my possible cording and seroma which seems to be getting bigger again. My arm is definately twanging all the way down to my wrist when I reach out, may need physio she thinks or some more instruction on how to twang the cording away! Got to ask the radiotherapist today to take a look and then see whether I need to see the breast clinic, the lymphodeoma clinic or the physio.. or possible all 3.. more appointments.. grrrr.
Hope the mini mince pies were good!
If only there was a biscuit to be had Kip. Might have a mini mince pie instead. Ended up in A&E this evening to be checked over as had horrendous pain. As bruised ribs and rib fracture are treated the same I didn’t need an X-ray... no heavy lifting but I don’t do that anyway. Will have to take it easy as my side/chest doesn’t half twang when I move certain ways. Trying not to shallow breath as don’t want to develop chest infection. Takes up to 4 weeks to settle. I’d just started to do hooping as well. OH is still traumatised... bless him.
Oh no Feenix you poor thjnk, look after that arm and the rest of the sore bits.. better have a biscuit to cheer yourself up!
Kip ... I booked on through BCC direct as my Bcn was off sick at that time. Bcn will book you on I’m sure.
Well.... I took a dive out of the car this morning. My foot caught on bag strap and out I flew. Landed badly on my ‘bad’ side... scrape on hand, face and knee but really clattered my ribs/ chest area where had mastectomy although don’t think I’ve broken anything. (OH had a look and did exam) . Really sore but can do exercises. Put myself on anti inflammatories and have cleaned and dressed wounds.... fingers crossed. Really tearful after as first thing I thought about was lymphoedema, just because I’ve heard of it developing after injury to arm although there are those that have had ops on arm and have been ok. So I tell myself that I’ll be ok and as OH tells me it’s mainly to do with infection. I’ll be using a tube of salon over next few days !!!
Gave OH a real fright ...and the woman who thought he’d run me over 😂 Hoping for no more mishaps.
Morning all, thanks for the lovely comments.
CDC - when my daughter said she wanted her old mum back I could have just wept and wept. Like you said, that old Mum is gone, but not necessarily for the worse. Its just so hard explaining everything to her and remainign positive when all I am thinking is what if! My children are coming to my last Radiotherapy so that they can ring the bell with me and I'm hoping they will feel some relief from that. I think I always feel worse when I am physically going to the hopsital. It just brings it all home and when I am going every day and sitting in that waiting area looking around me.. its just so surreal. I am going to see if I can find out about the Moving On Course today whilst there, so I can get that booked.
What an emotional time you are having, but seems par for the course and especially now Christmas is pending.
Kip ... your daughter saying what her Christmas wish is ... so heart wrenching. I hope you are have a good day and rads go ok + no traffic probs 🚗. Just thought ... put a positive mantra on your fridge....I used to do that and probably should do so again. Good you’ve got your tree up.... mine is a foot high, one my mam had ... takes no time at all 😂 Can’t believe Christmas has come round so quick. Tbh honest my favourite day is December 21st, the winter solstice, because I know that once that’s over the nights will be getting gradually longer and spring will be on its way. I should have been a Druid 😂. I’ve now got 2 bras from Asda which are ok. I’m still deciding about which one I’ll order from NJ but really got to decide today. Info .... If you sign up for sale alerts etc with Nicola Jane you’ll get discount off your first order.
Michelle .. hope you have positive contact with the Someone like Me service today and you get input from the psychology team to help you with coping strategies. It’s good you have spoken with your OH about how you are feeling although I know what you mean about not wanting to offload on him. I tend to refrain from saying how I feel when I’m have wobble thoughts even though OH has told me he’d prefer me to... he can probably tell by behaviour/mood changes anyway !!!! I do however mention it “in conversation” after I’ve got my head round it. I don’t have very frequent active wobble thoughts but they are probably there subconsciously just waiting for a chance to pounce. (You can tell I was watching Dynasties last night ... tigers 🐅). It really is good you are planning though and have booked a holiday. Russia will be good. Are you getting out running?
Clare ... pleased you are enjoying prep for Christmas. Dedicated No screen time is a really good strategy for more interactive family time. The Someone like me service will certainly have contacts for you regarding your surgical options and there will be many threads on here. I remember I had a time of very low mood after I started Letrozole but it was the time when I was struggling with the question of recon although it did get better pre op ... might have been a combination of both as I was definitely soooo less stressed after my mastectomy.
As you know I didn’t need chemo but I did get my hair cut short before my first op ‘just in case’, plus it would be easier to manage post op. I’ve kept it short ever since and it’s so much better. I started using lush shampoo bars but yesterday thought I’d use simple shampoo that needs using up but it made my scalp really flaky and itchy. I think I’ll look for some tea tree or aloe Vera shampoo from health shop. Any recommendations?
The apple trees got their cut too... well pollarded.
Got to find the lights to put up today and I may get out into the garden and make that Christmas wreath. Forgot ... need to post overseas cards and get the rest done.
I agree Michelle, time will be the key. I have 3 friends who have been through this and they all said as time goes on it gets easier.
Ive found the tamoxifen ok, just hot flushes, although i have achey jojntj and muscles which could be the tamoxifen or chemo SEs... Otherwise so far its fine.
Hi Michelle, wow what you've written could be me! I am feeling the same. We got a xmas tree yesterday and had a lovely time decorating with the children but all the time at the back of my head is "what if im not here to see this next year" .im too scared to look too far forward to and want to book a holiday but feel scared to tempt fate! Ive been feeling really positive lately but today could cry. My daughter told me the only thing she wants for xmas is me not to have cancer and be her old mum again!! Breaks my heart and i try to brave it out for her but inside ☹️. Must try positive thinking again... Hope you are ok today?
Cdc when your consultant said the 1st year is the hardest he wasn't wrong!!