Hi all
Am at the caravan and haven’t posted as connection so slow I keep losing my posts. Seem to have faster connection today so fingers crossed.
Jacq sorry to hear about your mum and sending you a big virtual hug.
Lyn enjoy Prague and try to put everything else to the back of your mind.
Started rads and tamoxifen on Monday. So far so good. Have to be reviewed by a nurse each Monday and although it was only my 1st I still had to see her last week. She told me to expect warm nights and a lot of throwing off the quilt after starting tamoxifen. Alredy warned.
Hope everyone has a good week.
Nicky x
hi nicky
I went prague just before got diagnosed with brain mets so i really did enjoy really wanted my girls to see it so that was great. I am trying to be very possitive if fact going out and gettin some book about it today.
Been only eating organic food snd am half makin the family eat it to but it’s much tastier its amazing. I think i will opened up a shop or something ha ha.
Treatment wise i have to wait six weeks for any results so just putting that out of my mind for now, not sure its thats denial or poisitvie thinking.
I know that lots of people don’t like the positive thinking thing but it helps me so please don’t shout he he
its 4.30 am so i am talking gibbersh too ha ha
Lynn
Happy Hols Lyn - you’ve probably already left by now!
And to the Lynn (with 2 n’s) - Yes, we all have to be positive, I definitely believe it helps more than we realise. Every medical person has said it to me - from the top consultants to the district nurses (not that they’re at the bottom of the pecking order).
And Pat - I do believe you’re sporting hair - and it’s DARK! I still look like Minty on a good day, and there’s not a bit of my natural blonde left. There will be soon though! It’s gonna take forever to grow 'cos it’s sooooooo curly.
Good luck with the rads Nicky. I still have quite a few to go. Skin’s holding up well though and … wait for it … BACK HAS HEALED COMPLETELY!
Thanks for all your hugs, you’re all lovely people! x Jacq x
Hi
Glad that your back has eventually healed Jacq.
Lynn I have seen so often how positive thinking can help, and also how devastating negative thinking can be.
9 rads down - can’t believe how quickly they’re going. Just started to get a little bit of breakdown where my bra rubs. Was told to let a bit of air to it. Not easy when you’re sharing a 16 foot caravan with your father. The best I can do is keep my bra off and wear a loose top.
Hope all is well with everyone else.
Nicky x
Nicky … let 'em swing. Just don’t take anyone’s eye out!
Hi ladies,
Mind boggles Nicky, though I know what you mean-that is the only area I have still probs with 2 weeks down the line. Nipple cleared up thankfully so antibiotics did the trick.
Had a really nice break in Prague, got back late last night absolutely shattered. Have to say we didn’t do as much exploring as we would normally have as I didn’t have the energy but enjoyed a lovely sail down the Vlatava and people watching on Old Town Square.
House still in one piece and daughter had even done some housework!
Lynn I agree with the others on comments about positive thought…I really can’t imagine being any other way as it really keeps you going, and gives you purpose. Good luck with whatever treatment you have to have.
Better go get some food on now or the troops will be revolting!! Back to reality!
Hugz,
Lyn xxx
Hi Everyone long time no speak, hopefully everyone is getting on with their lives as we all should be. Unfortunately my father passed away Saturday 8th August he had lung cancer one thing after another. I am now post tax 7 weeks. Hair growing on legs slowly not much happening on the lashes .What a year ! Roll on 2010 loads luv to everyone.
Ange xxxx
Oh Ange, I can’t begin to think what you’ve done to deserve first losing your mum and now your poor Dad. How awful for you and your family.
Just try and take a deep breath and take it one day at a time. Our bodies have been through enough this year, and we don’t need our brains scrambled too. I’m so, so sorry for you.
I’m so with you on getting rid of this year.
Take care. xJacqx
Ange, big virtual hug. So sorry to hear the news about your dad.
I’ve nearly finished rads - 5 more to go. Cooking nicely both from rads and from tamoxifen. Have started clonidine and am still waiting for the miracle of a cool night.
Lyn, glad you had a good hol.
Nicky x
So sorry Ange. You really have had enough to deal with-hopefully the rest of the year will start to change the pattern? Sending you huge hugs.
Nicky I have read elsewhere about clonodine-what is it and how does it work? Am going to see GP tomorrow to discuss SE of tamoxifen as I feel I can’t go on like this and cope with going back to work full time next week…between sweats, lack of sleep, no energy and feeling quite weepy at times, I feel as though I have taken a backward step!
On the plus side my skin has recovered well from rads and have been back swimming so there is light at the end of the tunnel!
Hope others keeping well?
Hugz,
Lyn xxx
Ange, I’m so sorry to hear about your Dad. I really hope this is the last of the rotten things you’ve had to deal with over the past few months. As you say, roll on 2010.
On the hair front, I found the eyebrows and lashes were quite slow to come through, and hair on my head is growing but at a snails pace! Just too impatient I guess.
Look after yourself, sending you a big cyber hug and a massive wish that things will soon be on the up for you.
And hello ladies - as Ange says, long time no hear. Glad everyone’s getting on ok - Nicky, I will also be interested to hear about the clonidine. Lyn, glad you’re back to your swimming, I know I must start back on some sort of exercise but I’m too knackered all the time.
Well, all the best to everyone, especially Ange. Take good care of yourself. Love and hugs to all, Pat x
Hi Pat and others,
Unfortunately back to sleeplessness so thought I would check on here to see what’s happening!
Went to speak to GP yesterday about the problems I am having with tamoxifen and she was very sympathetic, so I am trying Nolvadex D for a month to see if it has less severe SE.She is also writing to my cons onc to see whether she recommends anything else. At least I feel that they are going to try and get it sorted as I really don’t feel I could go on like this for 5 years!
Got my app in for gynae for 3rd Sept so that is the next thing I have to think about. I am definitely not coming back to this life as a woman…far too much can go wrong with the plumbing!!!
Back to work full time on Monday (we go back sooner up here in Scotland!), and even having been in part time before the holidays, I am feeling a bit panicky about how I am going to cope…Feel my confidence has taken a real knock.
Anyway hope everyone else doing fine.
Hugz,
Lyn xx
Hi Lyn, Hope the change in brand helps your symptoms. I had real problems with sleeplessness on the Tamox at first but now, 3 months down the line it’s not so bad at all. I’ve read other women’s comments on Nolvadex and several have said it’s better so fingers crossed.
I know what you mean about feeling panicky about work. My confidence was at nil when I went back and it’s slowly improving. Things I didn’t give a second thought to now seem like massive problems. But I’ve had really good support from work colleagues and management so that’s def helped. I’m sure you’ll be okay. When you’re not sleeping, everything else seems much more difficult to cope with so hopefully once that’s sorted, you’ll feel better. I just craved the normality of being back at work, expecting things to be the same, and of course it’s not the same. I just take each day as it comes and when it’s a good day, it’s great. Still have down days but look what we’ve been through, we wouldn’t be normal (whatever THAT is!) if we didn’t have the odd wobble.
Anyhow, all the best for tomorrow, let us know how it goes. And I really hope the Nolvadex D improves your symptoms. If it doesn’t, I’m sure there’s other stuff you can try.
And how’s everyone else faring? Good, I hope? Ange, hope you’re coping okay. And Nicky, how’s things - rads almost done, that’s great. And how’s the clonodine going?
love and hugs to all, Pat x
Hi all
Lyn I hope that yu’ve had a good day back at work.
I am getting better nights sleep now with the aid of a fan and a chillow. Clonidine is a tablet used for migraines but is supposed to also help with hot flushes. I think that itis helping a bit but I’m on a low dose for a month. At rads I was told that whilst on tamoxifen we can have clonidine, venlafaxine or gabapentine to help with the flushes but at rads review today i was told that clonidine doesn’t help many women. Will let you know what happens. I asked my gp for Nolvadex but she said that the onc had to recommend it and I know that he doesn’t believe it is any better.
2 more rads to go. So far the skin is holding up well so fingers crossed that I’ve got away lightly.
Hope everyone is ok.
Nicky x
Hi Everyone thankyou for all your hugs and wishes. I am going to work on Monday for a few hours, but am seeing onc on Wednesday may have to have operation on my chest wall or bit more chemo, will find out which on Wed. I,m going to Tenerife on Tues 1st Sept for a week so will see what happens after then.
Hope you are all doing well
loads love
Ange xxxx
PS All I am still hooked on bb !!!
Marcus to win - I know he’s weird, but I find him hilarious - especially on that diary room chair!
Hi ladies,
Well I survived my first full week back at work…enjoyed the normality…but completely shattered by Friday, so having a quiet weekend! I think the thought of going back was worse, and everyone has been so nice and pleased to see me so that has helped.
Been on the nolvadex d for a week and sweats are slightly less severe but not sure if it is the change of tablet or the weather being cooler. Still not sleeping well which is a pain, but have my rads review on the 1st Sept so will bring it up then.
Nicky, you will be finished rads now? Hopefully you won’t have any problems-I did have a reaction a week after finishing but persevered with the aqueous and it cleared up though skin still feels a bit irritated and itchy at times. Have others felt this?
Well better go get some sleep, now that my girls have come in from work-they both do barwork at a local nightclub, and I can never settle until I know they are back in!
Enjoy your break Ange-you deserve it!
Take care all,
Lyn xx
Hi all
Rads are a thing of the past! I finished last wednesday but still find it hard to believe that it’s all done and dusted. I am getting more sore where the booster was but hoping that by still slapping the aqueous cream on that I’ll escape anything too bad.
Really good news today - there is no genetic link. Apparently the consultanr was amazed as he was sure there would be but apparently we’re just an extremely unlucky family. My nieces are all breathing huge sighs of relief.
I’m still getting sleepless nights despite the clonidine but a fan and a chillow are helping.
Had to go for an interview about ESA last week which was a complete waste of time. May still have to go for another one before I go back to work! I’m going in to see my boss about a phased return to work next week. I must say that I’m finding the thought of it quite daunting after 10 months off. I’ll probably be back 2 weeks and feel like I’ve never been off. Glad that you had a good week Lyn.
Have a good holiday Ange.
Nicky x
Hi, Nicky, great news - very well done - how clever do you feel?!
Just permanent sweats for the foreseeable future now!
People tell me it’s getting cooler, well … I’m still sitting within close proximity of one of the biggest floor fans in London. God knows what my leccy bill’s gonna be like this year!
Yeah, whoever thought up that ESA interview crap is a total moron - I’m still lying low under their radar screen - and hope to stay there!
Hope you have a good celebration booked!
Lots of love, xxJacqxx.
Hi All
Went to see onc on Wed and she decided to try another chemo in tablet form. I start this on the 16th, its called capeitabine I think that you don t loose your hair, (hopefully coz its just come back) there are side effects but I hope they won t be too bad and I hope to work . I will plod on and see how it goes.
I filled in a form to receive a benefit of £40 a week for going back to work. Because I had been having employment support allowance , I also had ssp for at least 13 weeks they said I could have it for a year as long as I work over 16hrs and don t earn over 15 000 pounds, thats 160 pounds extra a month plus my wages ! I will do my best to continue working while I have this other chemo, but will see how it is. Has anyone else had this ?
Glad to hear you are all doing well Ang x