Hi Karen, I am a week behind you and have my last TAx on the 7th of Jan. I asked my onc when the RT would start he said usually 4-6 weeks later. I aksed if there was any reason not to dealy it as it would fall over half term and the children have had a really rough time I would rather not be going everyday to to the hosp a two hour round trip. He said that there was not medical problems delaying it and that sometimes with people in poor health they can delay for up to 3 months and it has no effect on the outcome.
Hope the weather where you are isn’t as bad as here!
I’m s’posed to be at the hospital this morning to get my bloods done before my chemo tomorrow, but the schools are closed & there’s no way anyone is getting out our street in any kind of vehicle!
They’re happy to do my bloods first thing in the morning, but it means I’ll be at the hospital a few hours instead of just an hour :o( …they did offer to delay my next Tax until the new year, but I wanna get it over with asap!..better get my winter walking boots looked out for my walk in the morning 'cause this snow isn’t about to ease up anytime soon…I just hope I can get to the supermarket before Christmas or it’ll be frozen chips & out of date milk on Christmas Day! LOL
Hi all - this snow really has scuppered things hasn’t it? I walked home to my house yesterday (I used to jog it in about 4 minutes, so no great distance)and it was exhausting. Had no idea it would nearly finish me off, just thought it would be nice to get out into it…wrong!!!
Hope you’re all getting on OK and that the SEs aren’t getting in the way of your Christmases? I’ve managed to get a reasonable Christmas together, but not quite the same as I normally would do. Was a bit frustrated by this yesterday, but am more resigned to the idea now.
Meeting my girlie chums for lunch tomorrow which will be wicked - what I’ve been looking forward to all week
Side effects haven’t been too mental although the tiredness is something I’m struggling with. I guess I just need to get used to the idea that I’m going to need a bit of building up.
Keep perky and well…only two sleeps left now - hope that those of you being swamped manage to enjoy Christmas. The fact that you’re that much closer to finishing is cold comfort when you can’t get stuck into the pies ;'(
Hi girls,
Hope you are all ok and I wish you all a Happy Christmas and hope Santa brings you something special!!!
Last bits of shopping to do tomorrow and then what is not done is tough.
Take care girls, don’t work too hard.
Love to you all,
Jane xx
Just want to wish you all a very Merry Christmas and Happy New year Girls - sorry for those of you being swamped this week - and i sincerely hope your SE’s are not too bad and that no one else ends up in hospital !!!
I asked Dr Dish my onc what % of swampers have sepsis - he said 5% - Funny that so many of us on this thread and from dx May thread have had it!!!
Got a copy of a letter to my Surgeon/GP/Chemo nurses yesterday stating that I had quite significan side effects on first TAx and he is going to reduce the dose slightly - but if the Se’s are significant again he may complete my treatment with weekly Paclitaxol (less harsh). Not keen on that.
I will be swamping next Wed 30th along with a few more of you - penultimate one!
Rachel (Mummytumbles)from dx May thread has arranged a weekend at Centreparcs Nottingham for the weekend 15th - 18th Jan 2010 there are 19 attendees at the moment but due to someone unable to go I think there is still space for one more if anyone is interested - the cost is @ £90 for the accomodation - need spending money for food/meals/activities (if you have the energy). If any of you are interested please let me know by personal message or on here - it should be a fabulous time - meeting other BC ladies LB1966 Lorraine is going and Al (cant remember her alias) - also Lulu - Sheenagh - Caro - Sharon (smallstar) Biggles (karen) - Dawn - Pauline and more. We have an executive new 2 bed villa and the remaining space is for a bed in the twin room.
Just want to wish you all a very Merry Christmas and Happy New year Girls - sorry for those of you being swamped this week - and i sincerely hope your SE’s are not too bad and that no one else ends up in hospital !!!
I asked Dr Dish my onc what % of swampers have sepsis - he said 5% - Funny that so many of us on this thread and from dx May thread have had it!!!
Got a copy of a letter to my Surgeon/GP/Chemo nurses yesterday stating that I had quite significan side effects on first TAx and he is going to reduce the dose slightly - but if the Se’s are significant again he may complete my treatment with weekly Paclitaxol (less harsh). Not keen on that.
I will be swamping next Wed 30th along with a few more of you - penultimate one!
Rachel (Mummytumbles)from dx May thread has arranged a weekend at Centreparcs Nottingham for the weekend 15th - 18th Jan 2010 there are 19 attendees at the moment but due to someone unable to go I think there is still space for one more if anyone is interested - the cost is @ £90 for the accomodation - need spending money for food/meals/activities (if you have the energy). If any of you are interested please let me know by personal message or on here - it should be a fabulous time - meeting other BC ladies LB1966 Lorraine is going and Al (cant remember her alias) - also Lulu - Sheenagh - Caro - Sharon (smallstar) Biggles (karen) - Dawn - Pauline and more. We have an executive new 2 bed villa and the remaining space is for a bed in the twin room.
hope the celebrations are as good as they can be, what with the se’s, chemicals etc. I hope you can all relax a little and enjoy some of the time.
I haven’t been on here lately because I am really struggling. I thought having finished chemo I could start looking forward to the end of treatment and getting my life back together. Unfortunately the incessant hot flushes are getting me down so that they have taken over my life and I am so depressed about what the future holds - not about the cancer but about my quality of life. I don’t know how I am ever going to have a normal life ever again. I don’t know how I will ever hold down a job again. I’ve had no sleep for six weeks, my GP is unhelpful and basically says ‘tough luck’ and won’t prescribe me any sleeping tablets as he believes I will become dependent on them. Neither anti-depressants nor any of the quackery including magnets and acupuncture are helping and I am at my wits end. I went to the pub on Tuesday and threw up in the car park due to the side effects of the anti-depressants. They must have thought I was some drunken reveller, when I haven’t had a drink for months.
I don’t think I have ever been this miserable, it’s worse than diagnosis or the whole of chemo - at least I had an end of that to look forward to, this has no end. I am not looking forward to Christmas and I am dreading the New Year as I have to start taking tamoxifen which is guaranteed to make thing worse.
I hope all of you are more cheerful than me, you seem to be withstanding the hell of tax very well and I hope you all have a great Christmas and New Year.
Just want to wish you all a VERY MERRY CHRISTMAS and a HAPPY AND HEALTHY NEW YEAR. Lets hope that 2010 will be a great year for all of us. We deserve it!
Loads of love to you all
Karen xxxxx
Hi Helen, wish I could say something constructive to you. Best i can do is send you a virtual hug ((((x))))
Sounds like things are pants, and that your GP is unable to understand what has happened to your life…but please don’t despair as there are others who may be in a position to help. Maybe your breast care nurse can help; a Macmillan or similar team associated with the hospital or even the guys here at BCC? There must be someone that will be able to help you unravel the pickle that life after cancer treatment must be.
For a start counselling may help you to understand what has happened to you ( I’ll be blowed if I can figure out what the hell it is we’ve been subjected to), and to rationalise the scary feelings that the thoughts of returning to the work place must evoke. And secondly there must be other opinions upon hot flushes and any residual long term effects that chemo might have.
You’ve had nothing but brown, mucky stuff thrown at you for the major part of this year, and you’ve taken everything and come out the other side. Just when you thought the nightmare was finally over you’re being asked to dig a bit deeper and find someone that will help you over this hurdle, but you can do it.
Don’t be fobbed off, there will be help out there for you, and don’t give up, you owe it to yourself to make sure this period of your life becomes history…which stays firmly in the past!
Hope this doesn’t sound patronising, just wanted to offer you something.
Hi Helen,
I agree with what Loocie has said, you have faced so much and come through it, I can’t believe you are getting such little help now. Is there maybe another GP at your practice that you could speak to? Are you still seeing an Oncologist who also may be able to suggest something? I’m so sorry you are feeling like this but you know we are always here for you.
Love and special hugs,
Jane xx
Just wondered if you had spoken to the people at Breast cancer Haven in Fulham. They also have branches in Leeds and Hereford. You can speak to someone on the phone, just google them, it may be worth a call!
Hugs Helen - this is hell - please get some help - all the suggestions are sound love - fed up with sweating too - you must get some help - big big hugs to you and all xxxxxx
thanks for all your supportive comments, it’s nice to think that someone out there has some sympathy. I did actually have a good Christmas - spent it with friends rather than family (so much less stress!) and it was nice not having to do the cooking. I went for a five mile walk yesterday - the furthest I have walked since sept, and didn’t my feet ache! And I’ve had my first bath since surgery - so nice (apart from the hot flushes which meant I had to keep sticking my feet over the side to cool down).
Not feeling quite so miserable now but still wondering how on earth I am going to cope.
I’ve spoken to my oncologist who prescribed the anti-depressants which aren’t working and now I don’t see him for four months, so no hope there. The bcn was sympathetic but just referred me to the oncologist although I will see her again at the end of Jan. My GP just said, I have to be careful what I can take as I can’t have much due to the cancer and tamoxifen and basically I just have to live with it. And I had some counselling and all she said was that I don’t have a steady enough mental base to create coping strategies and I just need to be easier on myself till I finish treatment. And the helpline at BCC was very nice and sympathetic but couldn’t offer any advice.
So, I don’t know where to turn next. I just seems I have to learn to live with no sleep every night and constant flushes for at least the next five years till I’m off tamoxifen - not much of a prospect really.
I’ve got a chillow but don’t really know what to do with it - it’s freezing when I’m not having a flush so can’t really sleep on it. I’ve had to get rid of the summer duvet as it’s too hot and get my very thin silk blanket out while the OH has two duvet’s on his side of the bed!
Anyway, I am feeling a bit more cheerful and am looking forward to my first swim for months sometime this week and maybe back to the gym next week - I think some exercise will make me feel better and I hope I can start to lose the stone I have put on through chemo.
Thanks again for your words of advice and support. I hope you all had a great Christmas and have a good New Year too.
Hi Helen - well you’ve certainly explored a lot of avenues…seems as though you’re getting short shrift where ever you turn. As you say some exercise may help?
In the summer (summer 2009) I ordered a copy of Amoena life magazine and in it was a discussion about tamoxifen. Some of the women there discovered that if you switch brands it resolves problems with side effects - such as the hot flushes. There is a forum at amoena.com/uk/Forum/DrugTreatments/ForumTamoxifen.htm and you can order back copies of the magazine at amoena.com/uk/CatalogueRequest/Catalogue_Request.htm Maybe you’ll find something you can wave under your Gp’s nose? Hope so?
Hope the rest of you are all perky and have managed to have a lovely Christmas time?
I’ve been beleaguered by side effects from either the tax or the antibiotics - not sure which. I started with a rash on my hand, which then spread to my cheeks. Then on Christmas eve my eyes started pouring as if I was peeling onions. This has got progressively worse (now red and puffy with chapped cheeks)and after spending a couple of hours in our urgent care centre, was dispatched with anti-allergic eye drops. They would’ve referred me to the ophthalmologists for some steriods, only there were none in! Going to see whether I can get an appointment with the oncs tomorrow.
My finger nails all hurt and are starting to look a bit niccotine stained (nice), and the skin is peeling off my fingertips…even nicer (must remeber not to grate any food as I’m not sure what I’ll end up with - yuk!!!) I think it is the tax I’m sensetive too as I stopped taking the abx but still have the problem. Maybe they’ll reduce the dose for the last cycle. Did I mention it will be my last cycle…the last one - woo hoo!!!
As you can imagine I look incredibly fetching with my bald head, yellow nails, peeling skin and pink, puffy, piggy looking eyes! Seriously doubt I’ll meet Mr Right looking like this, hey ho! Still can’t taste anything either which is a pain as I really fancy all the lovely goodies that are around at the moment (storing them up for when things get back to normal). Sweet things taste all bitter and disgusting, and savoury just isn’t very flavoursome. Nevermind, hopefully it will pass soon.
At the end of the day I know we’re having treatment for something that could potentially ‘see us off’ were it left untreated, but pleeeeeze…give us a break
Running away now as I’ve yabbered away at you for long enough.
Hi girls,
Hope you’ve all had a reasonable Christmas, Ive managed to put on all the weight I’ve lost while on chemo!!! Not good. Was quite pleased with myself but hey ho it’ll have to be my New Years Resolution.
Loocie, I haven’t had TAX 2 until Thursday and I’ve already had pink blotchy hands, went to a rash and started to spread up my arms, really irritated and very dry. Tried various creams and found aqueous the best (I am also prone to excema) now have to use loads of cream as all the blotchy areas are shedding layers of skin. Yes my nails are turning colour and have been very sensitive to hot and cold.
Luckily it is confined to my hands/arms. I have had pink puffy eyes for a few days and my Onc did warn me they would water a lot but only had that for a few days like the runny nose!! What we have to go through, still you only have one more.
Do you think that when our treatment finishes it will be difficult to get back to normal life without hosp appts, injections, blood tests etc? I do wonder how we will cope with the lack of attention even if it was unwanted attention as we didn’t really want to be here in the first place. I have asked already to have my other breast removed as I certainly don’t want to play this game again in a couple of years. I had a LOT of lobular cancer and that has a slightly higher chance of recurrence although my ONC did say he thought it was more likely to return elsewhere if it was going to. Lets not go there!!!
Helen, I’m glad you are feeling a little better, I still think there has to be someone who can help you, you seem to be getting
no help at the moment.
Good luck girls for those like me due our next cocktail this week.
Keep smiling everyone.
Love to you all,
Jane xx
JC
I’m already feeling the lack of support having finished chemo - the next appointment with the onc is four months away, I have no idea what will happen with regards to screening or follow ups etc. It’s all a bit weird really. And a bit lonely, I’ve been left with all these ongoing side effects and no support to deal with them. And I start tamoxifen next week… oooer. I only have my GP to fall back on now and I don’t think he really has a good idea of what it’s all about.
I’m off for my radiotherapy planning this afternoon - am I the first of this group to have done this? I’m not even vaguely worried about it, just the tediousness of another trip to hospital and parking hell, and it’s a different hospital from all my other appointments, so I don’t know my way around.
I start tamoxifen next week, has anyone else started this? Not looking forward to more side effects on top of the side effects, but suppose that is our lives from now on. Here’s hoping it’s not as bad as I dread.
Hi Helen and all I’ve just had my planning appointment sent to me - I’m going on Feb 10th, so will be a bit behind you. Will be interested to hear how you get on. If you needed to, surely you should be able to get an earlier appointment with you onc - if you could get the secretary’s number, I’m sure she would look at getting you an earlier appointment?
I got to see my onc today who has diagnosed Epiphora. Great!!! The ducts that normally allow tears to drain away have closed up (thank you Taxotere), hence the tears spilling down my cheeks! This should (only should mind you) be resolved once the chemo stops. Talk about cheesed off - look good, feel great, I wish! I never realised how much I depended on presenting a normal front, and now (what with recent events) not only do I feel like a patient, I bloomin well look like one too! Rrrrrrrrrrrrrrrrraggghhhh! And breathe…
Hope all you lovelies that were swamped over Christmas are doing OK and that you are perky? And, hope that any other taxers out there do not get this bloomin side effect as it is the worst thing ever
Sorry to hear Loocie you have yet another side effect courtesy of Tax. Only one more to go (little comfort I know) then hopefully things will get back to normal for you, well as near normal as they can when we have been through what we have. I am due my 2nd lot of Tax on New Years Eve. Went for my blood test today and to see the consultant, he wasnt there so I saw one of his team. I am having the tum injections for 7 days instead of 5 to help boost my blood count so as to avoid another stay in hospital. I really hope it works as I certainly dont want that again.
Hope everyone is keeping ok and side effects are not causing too much grief.
Good luck to anyone being chemo’d this week
Karen - just to say i started tamoxifen in 2006 and after a few months of enduring the side effects- no sleep, hot flushes etc etc asked my GP to change to Nolvadex-D (which is still tamoxifen, but by a different manufacturer)and the side effects were reduced almost overnight. Its a more expensive drug than regular tamoxifen, so isnt usually presctibed routinely. Anyway, it worked for me so it may be worth giving that a go. If not, its worth asking your GP to prescribe 10mgs twice daily, instead of 20mgs once a day, to lessen the SEs.
Having said all that - I think you eventually get used to not having quality sleep regularly, as most post-menopausal women do. Tamoxifen did make me put weight on very quickly (about a stone in a month), but after about a year and once id got used to the tamoxifen, working full time again and not being as tired, I went to slimming world and managed to lose the weight fairly easily and kept it off.
It is also well recognised that many women feel very isolated, lonely, worried and anxious when all the aggresive treatment is over, so what you are experiencing is very normal. We all become totally focused on finishing chemo, and look forward to life getting back to normal again once its over - and then we worry about the fact that we are still worried once it is over! I found that everyone else expected so much of me once the chemo finished, and didnt really appreciate that your body needs a long recovery period after all the treatment is over.
