Hi ladies, apologies for jumping in on your post.
I am starting chemo tomorrow. I am having acc EC only because my trust do not use the F part anymore.
My chemo nurse at the unit seemed surprised I wasn’t having the T bit afterwards though.
Is anyone in the same position and does anyone know what the T bit is for as it seems most have that too?
I’m just worried that if I’m putting myself through this that is worth it if there are bits I’m not actually having.
Thank you Jackie.
Just popping on to say hi,
Went for my 1st mammogram this afternoon, results will come through post in a month. I've also switched brands of tamoxifen for this month and am now trying Relonchem, took 1st tonight so will see whether my pain and fatigue levels change and what new joys it brings.
Hope everyone else is hanging on in there xx
Nice to hear from you both again. I've not been on here for a while either. Great minds think alike eh..
Good to hear from you guys again,
Carmen, hope you enjoyed Centerparcs & fab to hear your feeling positive but I know what you mean about the lack motivation as I feel the same but guess it's still early days. Im sure your boys will get you motivated over the hols.
I finally mustered up the energy for a swim last night and managed 30 lengths .... yep I felt pretty flipping amazing afterwards. Another milestone for me actually getting to the fitness centre, had a few tears on the way home as NEVER thought I would get to this point.
Sorry your both suffering with the SE from the hormone tabs wonder how long we have to wait for them to settle. Im still having fatigue moments, well more like hours and pain in my arms & hands. I saw my GP about this & am going to have some nerve conduction exploration (this week) & if everything is working as it should be, I will be having a break from arimidex and if the pain goes away (and I know it will!) they going to switch me onto tamoxifen......oh joy
Im still phasing in at work and its kind of good to be back but Im feeling tired at the end of the day.
Ive totally lost my passion for the job tho. Everyone running around and stressed out and Im just not allowing that to happen to me. Feel like Im in slow motion...... how strange....
Funny how cancer has changed my priorities.
Hello to everyone out there & look after yourselves.
Lots of love xx
Just had my 2nd acupuncture session, so far not that much difference but these things are cummulative. Been back on tamoxifen for 3 weeks now and the pain in my hips is returning along with the fatigue, here's hoping it doesn't get as bad as first time around.
Hope everyone else is getting on ok, and work isn't too stressfull for you Caroline x
Carmen, enjoy centre parcs i'm sure it will do you the world of good and just intime for the heatwave.
Caroline I guess i'm just lucky as apparently there are only 3 centres in the whole of UK to offer this service.
I have just swollowed my first tamoxifen in 21 days so watch this space. I made the most of my break yesterday and was out of the house for 12hrs, drove for 2 hours at a time walked miles and enjoyed the sun with my hat on.
Hope we all have a good week x
Hopalong its great to hear you are feeling so good and sounds like your energy levels have returned.
Im wondering which hospital you are with as the alternative treatments for SE of tamoxifen sound amazing.
I haven't been offered anything like that by my hospital. Haven have been really good tho but no time to go now as back at work. Pity ..... Good look when you re start the tabs x
Carmen, work seem to want my phased return to last for 4 weeks but I think I need longer to get up to my usual hours so im going to stick to my guns and drag it out a bit longer than then want me to.
I should be able to make up the difference with annual leave.
I saw the surgeon today and she re assured me that the swelling above the scar is my pectoral muscle firming up as I become more active. Yikes! She told me that I wouldn't usually notice it as its hidden behind the breast. Makes sense I suppose. Also, the change in skin colour is just my previously radiated skin protesting to the onslaught of surgery & chemo.
Phew .... just glad it's nothing to worry about ..... panic over.
Have a great time at Center parcs Carmen probably just what you need.
I'm feeling really well off the meds. I'm nordic walking twice a week and for the last 3 weeks have been going to aqua zumba. Went this afternoon and then popped to the hospice for a cuppa and a chat and indulged in a guided meditation. (Trying to wean myself off cake lol)
I have not needed an afternoon nap, and my pain has reduced not being woken up or the need for morphine. Still getting a few night sweats but they are not disturbing me, and back to flushing/power surges during the day but only about 3 or 4. I am so not looking forward to the restart on Monday. I need to start a flush diary both day and night again next week to see if I can have some NHS acupuncture, go again in 2 weeks. Couldn't have it when I went before because I was on my tamoxifen break. The physio said that if the tamoxifen is exacerbating the sweats they will restart within a couple of days. I will be fitter than pre BC if I get on the programme as part of the acupuncture is a commitment to 20mins of cardio vascular exercise daily and 40 mins of mindfulness breathing in addition to the 6 acupuncture sessions. The physio actualy explained things quite well saying that the body has had a big shock life threatening episode which then causes it to produce excess adrenaline and stress hormones which prepare us for the nervous response of flight or fight and that these excess hormones send lots of blood to the skin and irritate the area of the brain which regulates temperature so even a slight change in ambient temp which we wouldn't have noticed pre BC causes us to heat up and sweat. So I'm guessing the cardio is to get the body used to being hot and the mindfullness to help the mind to switch off even if we/I dont feel overly stressed.
Glad works going well Caroline can't remember if I said but I've been to occupational health followed by a meeting at work with HR and union and it looks like I won't be back to work untill October dependent on me being stable on some form of hormone treatment. I'm feeling abit of a fraud at the moment because I feel so well, and I'm also starting to get a little bored.
Carmen take things easy and I'm glad your not having too many problems hope it stays that way. Marli nice to hear from you too. We all seem to have pulled ourselves through the chemo fog and are now getting used to the new version of ourselves and all that brings.
Take care xx
You're not moaning Caroline, this is the best place to talk about your worries. Your doing really well with being back at work. How long are they allowing you to get back up to full hours? I hope they can sort out your hormone medication, I haven't been too bad on tamoxifen so far, it's been about a month, I've had a few hot flushes and a bit of an ache in my hip. Hope the surgeon can reassure you about your scar changes.
I'm struggling with tiredness/fatigue, I usually manage about 2 hours of activity each day, which wipes me out. Today I did some gardening, just potting up some new plants and a bit of light tidying and I was exhausted afterwards, so I had a long soak in the bath and haven't done much else since but still feel tired now. Feel like I could go to bed for a few hours! I haven't even felt remotely inclined to go to any exercise classes yet but it's early days... I'll stick to walking for now.
We're going to Center Parcs at the weekend, can't wait! 🙂
How are you all?
Carmen .... great the chemo weight dropping off & still enjoying cake. Ive not been on the scales for a while but my weight does feels back to normalish. I just need to get myself to some exercise classes and sort out the toning issues. We are going on a beach holiday in August eek ........ oh well think will just be happy to have made it to my hols this year. lol. Have you made it back to the gym yet Carmen?
Hopalong.... how are you and are you still off the tamoxifen and are you going to be trying another drug?
Im getting shocking carpol tunnel type pain on arimadex and this keeps me awake most nights which is becoming a problem but Im getting things checked out and there has been mention of switching me to tamoxifen.......mmmm
This is my third week in a phased return to work. Just worked mornings the last two weeks but managed a full day yesterday and yep im quite knackered today!
Carnt believe how tired I am but struggling to sleep. Still awake at 4am! Anyway, happy its my day off today.
Think will bake a cake Carmen......
Ive got an appmt with my surgeon later today as noticed some swelling above my MX scar eeeek ....... .... also bit of discolour at one end of the scar. Looks bit like a bruise but definitely is not.
Has anyone else has anything like this.
Feel like my post is a bit of a moan so sorry girls but just needed to vent.
Hopalong, I was wondering how you're feeling now, I guess you've been off tamoxifen for a couple of weeks or so?
Ps went for a walk with a friend today than went for cake, but despite all the cake I have managed to lose half of my stone of chemo weight!
Your sounding perky Carmen. Glad your feeling better and getting out with friends. Thats the kind of therapy we all need. I met with a close friend this afternoon for tea and the obligatory cake of course.
Spoke with my olcologist today about the pain in my chemo arm. Ive been referred for nerve exploration to assess what it is exactly.Then may possibly change the hormone tabs if it doesn't settle down.
Hope everyone else having a good week xx
Wow Carmen , you are keeping busy. Sounds like you are really getting back to your old self. Just returned from an afternoon at the Plant Nursery with my son's girlfriend's mum where cake also played a part.
Cake as a treatment for BC should be on the NHS me thinks !!
Oh I dunno Carmen I could get quite excited about a new Dyson. I also love shopping for soft furnishing very sad I know ha ha.....
Well done to your boy for getting the braces fitted. It's so painful. Very brave boy and you for holding his hand.
Hope your feeling a better this week Carmen and the sunshine has been able to lift you. I felt very tearful for quite a while when I finished the chemo and it still doesn't take much and Im bubbling all over the place.
We've been through such a lot and it's going to take time. Try be kind to yourself.
Hay and Im impressed with your weight loss already. Go Girl!
Hopalong ... your weekend sounds hectic! Guess the break from the tablets just what you needed. It must been great getting back to your old self ..... for a bit anyway.
My weekend has been quite busy too. I actually went out to a 50th birthday party on Saturday night without headgear! It was soooo fab to be out with friends again. Even strutting my stuff on the dance floor ...... well, was more like a bit of a shuffle lol.....anyway way great to enjoy a night out.
Can definitively see the light at the end of the tunnel.
Take Care Everyone and have a good week xx
Had a lovely weekend, hope everyone else has. I had a hair appointment on Friday and decided to bite the bullet and have had all my crappy thin hair chopped off to try and blend with the new friar tuck growth, so I now have the regulation post-chemo cut. I also went to a concert with my parents and sister on Friday and got home early hours of Saturday morning with a 7am alarm call to go to the Horse Trials. Absolutley tipping it down so made the decision to not go. Spent the day at parents and helped mum to bake a large fruit/christmas cake the house smelt lovely. Had another early alarm call to try to go to see horses again and as it was only light drizzle decided to go for it. I had 5 layers on got soaked and cold but really enjoyed it.
I'm making the most of my tamoxifen break, its only been a week but I feel so much better both from a pain and energy viewpoint. could never have done everything i've done this weekend and drive 2 weeks ago I could'nt even manage a 2hr coffee and cake session without nearly falling asleep at the wheel driving home on the motorway. My hot sweats have also reduced. Going to the NHS acupuncture physio tomorrow so see if it is as beneficial as I found the Haven sessions.
Hopalong .... I would just make the most of your time off and get yourself 100% before you go back.
It sounds like that what your occupational health are expecting....
Ive been back to work for just 2 mornings this week and your right I am a bit drained but it has been good to get back to a little normality. It felt good to switch my focus away from BC an all the negative stuff that goes with it. I am very lucky to work with a group of very nurturing women and they gave me a warm welcome.
Planning on building my hours back up to the usual 30 over the next few weeks but will be taking it real slow as dont want to end up back on sickness leave. I do feel this could easily happen if I try to rush my return.
Carmen ..... I agree with you about the 10 hour surgery I dont fancy it either. My BCN told me that delayed recon is a long process and of course not a priority, so there is a waiting list, (imagine that, a waiting list for 10 hours on the chopping board!) and they will only go ahead when the patient is emotionally ready.
So, taking all this into account, it will probably never happen for me lol .......
Hope your hands are starting to feel better. Keep us posted if your do try acupuncture as would be interested in how it works for you. Im experiencing some joint & carpal tunnel type pain due to the hormone drugs I think and Im wondering if I sound give it a try. I've seen my GP about the pain and he is sending me for some nerve testing thing at the hospital. Not sure what that will prove but hay ......
Looking forward to being at home tomorrow in the sunshine (with luck)
Love to everyone xx
Wow your driving challenge sounded thrilling. Think your very brave.
Hopalong, thanks for telling me about your stick on boob. I like the sound of it but I'm still a bit tender around my MX scar & couldn't imagine a prossy that close just yet. I find the normal one uncomfortable after a while and always a relief to take it off.
I'm still mulling over reconstruction. I spoke to my BCN on Friday about it & she told me about a women who had it done recently and was in theatre from 9am till 7pm! Same op as I would need (relocating tummy upwards & silicone implant). Don't know if I can put myself through that......
Been busy in garden today and out for a walk this evening. Its been lovely here today.
I'm going for aromatherapy in the morning then work on Tues am.
Have a good week everyone xx
I'm also having a fairly relaxing Sunday afternoon, hubby and the boys have gone to take part in a Scout parade in Chester so I've been for a walk (my usual route) in the sunshine. I've been on the new beta blockers for 3 days now and I think the breathlessness is improving. Can't say the same for the sleeplessness though... I only noticed when I switched meds last week that disturbed sleep is a se of beta blockers. And I've been thinking I was just rubbish at it!
Yesterday I did my post chemo treat, a charity driving challenge... I had to slalom an HGV through cones, reverse park a double trailered truck, drive a fire engine, do figure of eight with a petrol tanker, drive and scoop mud with a JCB and mini excavator, drive a mini dump truck and scariest of all... drive a police car as fast as I could towards a speed camera and not brake until the policeman told me to... I braked early every time! It was fab and it was to raise money for the hospital.
Tomorrow I have my six month review at the hospital and reflexology.
Hopalong - are the sweats not getting any better? Sounds like you're having a really bad time with them. Hope your hip pain is improving too.
All this talk of bowels making me smile. Mine were shocking during chemo & must say have just about settled 9 weeks post chemo. Oooooooo so glad to be on the other side of chemotherapy.
Hopalong hoping things more regular with the movicol & please let us know how you get on with your new foob. Does it actually stick on to your skin then? & is it the same weight as the silicone prosthetic?
Carmen hope you got the new meds & breathlessness cured. I felt breathless during chemo & for a while after but seems to have gone now.
I've been I to work today & was extremely touched by the warm welcome from the lovely people I work with. Yeah so its back to work for me girls. Will be gradually building my hours back up over the next few weeks.
I'm ready........ though but going to make the most of the next few days. Looks like summer arrived at last!
My bowels certainly embarrassed me during chemo, however the kids thought the rather loud rumblings were very amusing!
Am very impressed with my cardiologist, his secretary rang me this morning he thinks that the beta blockers he prescribed to stop the SVTs may be the cause of my breathlessness. They've faxed a medication change request to my GP who says I should be able to collect it from our chemist this afternoon... it's good when the system works!
Good luck with your new foob (and your bowels)!
Oh dear ladies my bowels did embarrass me, Oncologist had a quick glance but wants to wait for radiology report but cant see anything obviously nasty/worrying.
Consultant - How are the bowels
Me - A bit constipated
Consultant - I would agree
best up my movicol intake currently on 1.
I am to have a little tamoxifen break to see if my side effects are tablet or chemopause related.
Collected my new stick on Foob, its was sold to me by BCN as wonderful and will solve all my minor niggles, after waiting a month for a new size when I tried it the cosmetic apperance when clothed was not good so came away with the 1 the nurse thought was too full (and I thought was ok) Hoping I dont react to the adhesive as I struggled with PICC line dressings and my sweats don't make it less sticky and we have a repeat of the swimming costume incident.
Happy to hear there has been some movement Hopalong. I empathise really do......
They do say that the side effects settle down with time. How long have you been on the hormone tabs..... as carnt rmbr. Im on pack 3.
Well, Ive got semi perminant colour on my hair now and it hasn't fallen out. whoop whoop!
My hairdresser, who is also a good friend, told me that the re growth is full and stong but most of all even. It looks loads better so happy I took the plunge.
Thanks for your support everyone and hope you all ok today.
Glycerin supps and all is well, I'm taking the laxido too, I have read that tamoxifen can be constipating so thats also probably not helping.
Still another 2 weeks before my NHS acupuncture treatment but my flushes are subsiding am back to wearing my magnet.
Having a lazy day today gearing up for a full morning at the hospital then will pop in to the hospice in the afternoon.
Have a good day everyone xx
Oh no hope I haven't worried you. My beta blockers are due to FEC chemo giving me SVT... I'm on herceptin now, hope it doesn't give me any more heart problems. Have my third herceptin tomorrow and an echo on Thursday. Have you finished your course of herceptin yet?
I do have a few audio books from a free trial with audible but they're not downloaded on my iPod. Will have to do that tonight or tomorrow... I'm having a zopiclone night tonight as I have to drive a lot of places tomorrow!
Thanks for the info xx
Carmen - Boots do have them and I buy mine at Tesco. Not looked at the contraindications for the heart tablets must admit. I am taking Beta Blockers and ACE inhibitors because of changes to the heart due to Herceptin. Better check before I take them again! Think you can borrow recorded books from the library. Hope your bites go soon. x
Hope the movie bites not bothering your poor head too much. Not had a problem with them here yet.
Raining and windy today.
Have you tried Rescue Remedy Night time drops. I find them useful - they seem to work for a couple of weeks , although sometime I do wake up about 4am. Lack of sleep is the pits. When I wake in the middle of night I put my MP3 player on with a boring recorded book and this usually puts me to sleep. Never hear the end of the story. Player has a sleep timer which is useful. x
Thanks for you replies girls.
I'm definitely going for it & will let you know how I get on. After reading your post I'm going out without my hat today! Well if its flipping warm enough .....been bit nippy here of late.
Happy Sunday girls xx
Ha ha that sounds like a whopper Hopalong think you should be very proud! Thinking about it, mine would probably sink like a stone too..... ha ha....God! need to double check its secure, never was any good a surface diving.
Well, Ive made an appointment with my hairdresser on Tues for some colour. Probably way too soon as just 8 weeks post chemo. Ive got about half an inch re growth and its returned in varying shades of grey and it really does have to go now.
I know the advice is to wait 6 months but what the hell Im going for it!! Ive been covering my head since I gave up on the cold cap 2nd cycle and shaved so figure nothing to loose.
Just hoping to even things up and get rid of the steely grey. Think will then brave enough to go out without a hat or a scarf.
Thinking a vegetable dye will be less harsh than the usual chemicals. My eyebrows and lashes have finally (almost) returned now and I tinted my brows last week and they havent fallen out so hoping my hair will be the same.
Yikes!! what do you think girls?