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.
Oh Jean you poor thing, that sounds painful. I hate falling over ive done it a few times running and I always cry! I would definitely hit the mince pies at least, maybe treat yourself to a tub of hero’s! Hope it’s not too sore and you feel better soon xx
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.
Oh no Kip that sounds awful, although the appointments are annoying you need to sort this out. Although I feel the same as you the appointments are a reminder of it all. My arm got very stiff by the end of rads, and I have to say it’s only just starting to feel as it did before rads. Weirdly im starting to notice the numbness again which had kind of been overridden by the stiffness if that makes sense?! I wish when I’d started rads they’d told me it would take 4 weeks to recover from. Hopefully the radiotherapy dept will refer you today. Almost forgot to say I saw your lovely picture on your chemo thread! You look great and your hair is growing thick and fast!
CDC I agree it is so important to look after our whole selves, head and body. I spoke to the someone like me lady yesterday, she was lovely and I think I feel better having spoken to someone who also has had BC but I guess she can’t tell me what I really want to hear, as no one can. Is your therapist someone who you found privately or through your hospital? Was it someone you have chosen to see because of BC. I have thought if I don’t get referred for counselling then seeking some privately but I don’t know how to go about choosing someone who will understand what I have been through.
I haven’t been told of or heard of any HER2+ trials, presumably this is something your onc suggests?
I am impressed with your no screen time hour, how is it going?
Jean I’ll join you as a Druid, my birthday is 21st June, summer solstice! Last year I climbed Pen y fan at 3am,!it was great. It was pitch black and you could see everyone going up with their torches. There were about 30 people at the top and we watched a beautiful sunrise. Quite different to this years birthday, in chemo. You are right my OH also is probably aware when I am low, but they’ve been through so much too haven’t they? I’m not back running yet, waiting for the last couple of blisters to heal. They aren’t painful now but I don’t want my sports bra to rub on them, basically I’m not taking any chances! I really hope you aren’t aching too much from your fall, it’s the last thing you need on top of everything.
My girls are home at the weekend, I can not wait!!! I’m really so excited! Hopefully they will take my mind off the rubbish stuff.
How everyone has a good day xx
Oh Jean I do hope you’re not feeling so sore today- sounds like a horrible fall. Did the hospital offer any advice? I did something similar years ago, tripped on a rucksack strap as I was getting out of the car. It’s a frightening experience isn’t it? I landed on my elbow!
Michelle glad you got to talk to someone from the someone like me Service. I have had my therapist for some time now as I started seeing her when my Dad was ill. I found her privately via a friend who had just finished working with her so she was highly recommended. I have tried cognitive behavioural therapy as well as other types of counselling but these didn’t work particularly well for me. The lady I see is a ‘traditional’ psychoanalyst. I even lie on a couch! I was surprised that I’ve found this approach the most effective for me. I had very poor self-esteem and on reflection, she helped me realise various experiences during my childhood contributed to this. It’s helped me accept myself. I’m also far more resilient now and this has really helped with coping with my BC diagnosis and treatment. I know talking therapies aren’t for everyone but I feel a sense of relief whenever I’m due to see her as I know she’ll listen without judgement. Do you have the iCope system in your area? In London your GP can refer you to this service and they then help work out which services would be most helpful. I had 6 free counselling sessions before seeing my private therapist and they were helpful but I needed to see someone long-term. What I would say is if you dodecide to see someone, if you don’t feel you ‘gel’ don’t be afraid to walk away and find someone else. I’ve made the mistake in the past of sticking with a counsellor out of guilt and I’ve learned you really need to trust your gut feeling.
Well I’d better head to bed.
Sending good wishes to everyone x
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.
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.
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!
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).
Good evening ladies and druids!
I would ask how you’re all doing but sounds like you are really struggling after your fall Jean, sleeping sitting up sounds very uncomfortable, I hope the pain disappears soon. Is it the boredom so eating more or just not moving that is pushing the weight up? I was doing so well and lost 4 or 5 lbs then I went back to chocolate and have put that back on and more! Still I’m hoping to start running again on Saturday although the forecast isn’t good. I’m sure once you are up and about again you will soon be hooping!
Kip I read you’re on your 2nd box of Tamoxifen, me too and mine is also a different brand to the first even though I deliberately went to the same pharmacy. All ok so far, thankfully. Although flushes are happening thick and fast! I can’t believe no one has looked at your arm, It’s good ou have been referred for physio as I’m sure it will get stiffer in the last week of rads, mine certainly did. Thankfully movement is back to normal now and blisters practically gone, 4 1/2 weeks post rads.
It’s interesting what you say about counselling and counsellors CDC. I had my first session on Tuesday. It was at the cancer centre I go to with a trainee (young male) and his supervisor (mid aged female). The trainee did most of the talking ( well apart from me) but the fee things his supervisor did say really hit the spot. I felt exhausted afterwards but it did feel good to say everything that has been on my mind and that is worrying me, however I wonder if I can ask to just see the supervisor? I have another session on Tuesday so I will see how that goes. It must be good to have have found a therapist that has helped you so much, I quite like the idea of lying back on a couch!
I have had a hectic and stressful couple of days organising our Christmas choir fundraiser which happened last night. Everyone seemed to really enjoy the event, it wad a lovely start to Christmas and we raised over £700! I am sooo pleased! I also had a wonderful surprise when I got home, my eldest daughter is home 2 days early from uni!! ?
Wishing you all a wonderful weekend and hoping you feel better soon Jean xx
Hi juliewulie
Thanks for your message, I was referred by radiotherapy review team to psychology and have had my first session. Are you at Velindre too? What stage are you st of treatment? We might have sat next to each other in the waiting room!
Juliewulie, you were just finishing treatment as I started (March). I’m doing the Velindre trek in Nepal in Feb to raise money which is why I had the fundraising concert last night. As Feb will be 11 months after my diagnosis I wanted to end that year on a positive. I just need to improve my fitness a bit!
Im glad you are now getting the counselling you need. I’m hoping I won’t need too many sessions I just need a rational perspective on some things and a few coping methods for the ‘what if’ moments.
Have you heard there is a Maggie’s centre opening early next year. It’s on the side of the Velindre site. I intend to visit they are supposed to be very good and offer lots of different things. X
Well done Michelle21 for doing the trek and raising so much. It’s a wonderful place. I knew there was a Maggie’s opening there but not when. Do you think you’ll attend? I may if I feel need to. I live further up the " valleys" so not on my doorstep.
Let me know how you get on.
Xx
Sorry Michelle21 just re read your message and you are going to attend. If you hear about opening etc could you let me know? I too have heard they’re very good. I’m willing to give anything a go.
Xx
I’m outside of Cardiff too Juliewulie, if you want to meet up at all send me a pm, no pressure if you don’t want to. Of course I can let you know if I hear anything about Maggie’s, I think it is scheduled for Feb opening although it doesn’t look very ready at the moment! X
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?
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!
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.