Welcome to everyone starting chemo in January.. we are now the "" January Jems""
Didnt think I would be posting in this section of the site.... had good news though... no spread to the lymph nodes :-)) ...it seems due to it being a high Grade 3 Im to start on chemo first... then Rads.. then Herceptin....dont think I took it all in to be honest... this part has always scared me as i associate it with Ca.. daft I know.. but loosing all family members to Ca.. it just scares me....so I think I will be dealing with it one day at a time... i should hear next week from my onc... get the ball rolling... any advice, tips, wigs etc would be grateful... thanks ladies xxx
I'm back in the land of the more positive-spirited! Thought my final chemo two and a half weeks ago would make me feel really upbeat but quite the opposite. I have been really down and very negative about everything even though I have just spent five days at our house in Spain in the sunshine. I forgot about the usual post chemo blues plus the SEs and they seem to have gone on longer than I remembered. Emotionally felt much brighter this morning for the first time despite eyes and nose running like a leaky tap and that "not quite right" feeling still in place. I realise I probably haven't felt quite right for the last four months and hope all that will change soon.
All booked in for five weeks of rads in Oxford starting on 5 June. It seems there is so much of this horrible disease around the radiotherapy department there is now a 7-day operation so weekends are included in the timetable. I've got a Wednesday to Sunday programme so Mondays and Tuesdays are my days off. It does all sound a lot easier than chemo though despite all the travelling and daily inconvenience.
Morwenna I have a 36DD prosthesis which was fitted by our breast care nurses here and was completely free-of-charge. Our local health authority seems to be quite generous with breast cancer patients and offers top-of-the range prosthetic breasts so I tried on lots of different makes to get the right one and even took one home and wore it for a couple of days before finding out it wasn't as good a fit as I thought. I'm now as happy as I can be with my falsie but I know I will never be completely happy and do want a reconstruction. After chemo my scarring is very uncomfortable and I can't wait to rip of my bra as soon as I get home. Hopefully that will improve. My breast care nurse advised against M & S bras before my mastectomy and I went against her advice and bought 3. I never wear them now as they are not as good a support, shape etc. as other post surgery bras. The best I have found (and I have bought loads of bras since my op) are from amoena website. In particular my favourite, prettiest, most comfortable one is from Anita range. I also have quite nice fitting swim prosthesis and soft cotton sleep type bras that I wore immediately after op and hopefully will take me through radiotherapy. Good luck with any purchases, it's a lot of trial and error.
Lots of luck and good health to everyone as you continue your treatment and for when it all eventually ends. I'm not really sure I will ever be the same again. Not sure who the real me is any more or what my goals, plans, philosophies are for the future. I do think counselling post treatment could be quite helpful. For the moment I just want my hair, eyebrows and eyelashes to grow back and my eyes to stop watering. Rather short term goals at the moment! Gay x
Hi ladies...Hope you all have a good bank holiday and hope we get some decent weather.
Hope your lump turns out to be nothing to worry about Yvonne..Odds are it will be nothing. My thoughts are with you on Monday Rhonda.. I'm sure you will be ok. Hope we have some better weather for you Morwenna when you come over to visit your parents. As for the prosthesis...well I have written a poem about mine.
Think I'll stay in
I have a boob that strays....it gets me down a lot
I dare not dance the Tango...As out it will pop.
I've tried buttoned blouses..but it rides up to my neck,
Funny looks I'm getting used to, but I feel a total wreck.
It gets so hot and sweaty....And makes me feel uptight
And with the wig as well I'm not happy with my plight.
I know I should be grateful to be well and still about
But until my reconstruction...I'll leave socaliazing out.
I purchased a prosthesis today. I guess it looks ok, but I don't think I'm going to be particularly attached to it any time soon!
I'm feeling pretty anti-everything-cancer today. It has rained for two solid days ( very unusual for here ), and I'm fed up with grey and gloomy, inside and out. I also think days 3-5 are the worst in my weekly cycles, and this is day 3. Each week is just a little worse than the one before. 4 more to go, and then I'm planning a visit back to the UK to visit my parents before starting my rads in July (Dad is 90 in June). I'm just procrastinating a bit re booking the flight as I find myself quite anxious about how I'll be.
Has anybody else got a prosthesis? How's it going? Where are you buying bras? I hear Marks has a good range .....
Yvonne, I hope all turns out ok on Thursday, and your lump is nothing to worry about!! xxx
Hi Girls, Yvonne I do hope the lump you found is as you say just Seroma, try not to stress to hard, I know easier said than done, surely after all that FEC nothing could grow, so I'm sure it will be tissue or seroma build up! My surgery is Monday morning early, in yesterday's news paper here, they named my surgeon as one that is being sued here by 3 women for botched up re construction jobs after Masectomy, in 2010 just going to court now! This has surely got me a little nervous, it's a bit late now to back out as I've paid him upfront, hospital, aneathesis are all booked. Wish me luck! Hugs Rhonda. Xx
Sorry Sarah I'm only having the 8 FEC's 2 more to go. Will be SOOOOOO glad when it's all over.
I found another lump this morning, I'm hoping it's just another seroma where I had the lump removed. I phoned the BCN and have an appointment for next Thursday. I certainly can't complain about the service I get at Salford Royal Hospital.
Have a nice weekend everyone although with it being Bank Holiday no doubt the weather will be crap.
I'm with you there Morewenna, I couldn't think of anything worse than sitting around with a group of other cancer sufferers, how depressing that would be! Thanks Irenee I may need good luck, sorry you are feeling so bad that you were layed up in bed, I hope your feeling a lot better by now. It's now 5 weeks past last chemo, still have aching bones but the last 2 days they are not quite as bad, so I hope in time this gets better. Starting to see a little bit of hair come through, I am so over wearing a wig every day, something I will never get used too. Had to smile Yvonne about you getting God bothered at your counselling session, don't blame you for not going back. Hugs to you all Rhonda x
Hi Morwenna.. Sorry for the delay...have had no energy so have been in bed for two days. Chemo may be over but SE's still there. Yes I suppose I can still have counseling...I am going to need it. When I have my line taken out I will approach the subject. Hope everyone is as well as can be expected. xx
Irenee, can you not still access counseling if you need it?
I think its generally accepted now that the toughest time can be when you are finishing active treatment and feeling insecure and anxious about what happens next, and trying to "get back to normal life" .......
Yes, this forum is amazing as a place to vent and compare notes.
We also have another charitable cancer support place in the city, and this offers all kinds of groups, therapies and exercise classes. I went to a few sessions, but I'm kind of reluctant to go there, as it seems to be mainly people who have had active treatment and need help moving on, with lots of "mutual support", and a heavy emphasis on the spiritual side of things, ..... More "Ohmmmmmm" than "God-bashing", but I didn't feel it was really me. 🙂
I feel I need more practical stuff, .... Navel gazing is not entirely my thing. And the last thing I want to do is sit around with lots of fellow sufferers comparing our different types of cancer.
I went to join a local cancer support group who offered all kinds of free complimentary therapies but before you could have any of them you had to see a councillor. This was supposed to be an independent organization and held its meetings in a church hall. The councillor was so patronizing and a "god botherer" who just wanted me to join her church as she thought I would get a lot of sympathy from them! She made me feel worse not better and while I know other councillors wouldn't be the same she's put me off. Needless to say I never went back for any of the massages etc.
Sometimes it would be nice to talk to someone about all the bad stuff we go through but I don't want to dump all that on family. Husband is very good but I don't even tell him everything. That's why this forum has been a life saver for me. I wouldn't have got this far without all you lovely ladies. Thank you just for being there.
I was offered counselling more than once and I wish I had taken it. Well done Morwenna its a big step in the right direction. Good luck with the reconstruction Rhondacat..hope all goes well...I'm thinking of having it done later this year. Irenee xxx
Love your poem too Irenee, so true, only someone who has gone through Chemo & BC really understand how dreadfull & crap it is! So glad Morwenna that your counselling session went so well for you, yes I'm one of those who think I can deal with this on my own, but sometimes it's good to talk to a stranger than someone close, you can be more open. I keep my SE to myself thinking who wants to really here about them, except for all you lovely ladies here. Love to all Rhonda x
You can hopefully find something you can access. What I particularly like about the bcscf that I attended is that is a charitably run program, and is specifically for breast cancer, rather than encompassing all cancers. For while breast cancer has a fair amount in common with other forms of cancer, there are certain things that set us apart.
I saw a doctor at the Breast Cancer Supportive Care Foundation in Calgary a couple of days ago. I was with her for more than an hour and a half, and she had all my medical reports and full history to hand. I was able to go over a lot of stuff that had been bothering me, and she helped me to get a better handle on a few things.
One thing we discussed was fear of recurrence. I was feeling that all along my case has been somewhat unusual, and rather unlucky, and that it doesn't matter what the stats say as I feared I am always at the wrong end, if you catch my drift. She did help to allay my fears a little but also said that I would be given loads of counseling and support after my treatment finishes, and that although those fears are normal, there are good strategies for dealing with them.
I am so happy I went to see them. They will put together a personalized "survivorship" package to support me through the remainder of my treatments and interventions and rehabilitation back to work, and moving on to a healthy future.
I don't know if any of you have similar support programs accessible, but I would say do investigate the possibilities if you do. I was initially reluctant. I felt I was doing fairly well, ...... most of the time, and I was kind of sceptical of the benefits of counseling (I had breast cancer, how will talking help??) ....... but then I thought, why grapple with this on my own if the help is there for me, and what's to lose by my going there with an open mind?
So pleased I did now! I think it is going to be tremendous. 🙂
Thanks ladies glad you liked the poem. Hope you are doing fine. xx I have managed to upload a picture of me. I have a bit of a breathing space at the moment as I don't have to see the onc. until late September..no scan for the time being and I get my hickman line out on June 5th...then have a holiday planned in the Cotswolds for June 17th. Good Luck 'Jems' and thanks for being there.
Oh Irenee, I think you have hit the nail on the head with your poem. I think we all live in fear of it coming back. Thank you for your poem. Hope you and all Jems have good weekend with minimum se's.
Thanks for the boost of confidence, I also think Morwenna maybe some women have high expectations on how there breasts will look, I know & don't expect them to look the same as one was cut off and re built, but so far he has done a great job & made me a new boob & it is back up to a small D cup, this implant now has been extremely uncomfortable like a hard coconut under the skin, so I'm looking forward to surgery! You are always going to get dissatisfied patients when you do so many! Here's hoping he does his best job, I'll tell him to pretend I'm Angelina Jolie LMAO xoxo
Oh dear, I can see why you might be worried. I think too, that there are never any guarantees how surgery will turn out. There are always risks, although steps are taken to minimize them. Also people heal in different ways, but it is easy to blame the surgeon when things go wrong. No wonder plastics guys are the most highly paid, .... I hey they need to ne to pay their insurance premiums!!!
The vast majority presumably go extremely well though, it is only the dissatisfied that you hear about. Everything crossed for your Op! xxx
Hi Morwenna, yes I do think Taxol is cumulative, I was ok until after I totally finished, shocked me as I thought I would be feeling great by now! Like you I'm also sensitive to the sun, & my eyes tear up more if I'm outdoors. I have no eyelashes at all, they hung in until the 2nd last Docetaxel. I do hope your second half is kind to you with fewer SE. & you dont get this terrible bone pain i have, ive read it can stay with you for months.
I was talking to a girl last week who had the same treatment as I did & she said her energy levels & some SE took 18 months before she felt like herself again, I couldnt take feeling like this for that long, so hope it improves quickly.
I do live 2 hours drive from the hospital, weekly was never mentioned to me, so went along with the 3 weekly! ....
Only 1 & 1/2 weeks until I have final re constructive surgery to replace the skin expander with a gel implant & a breast lift on my good saggy old boob, I am a little concerned as this week I read in our newspaper my surgeon is being sued by 2 women from back in 2011 for botching up there re-constructions. I hope he's a lot more careful these days 😉 feel its too late to back out now, it is all booked. All the best Love Rhonda
Yes I believe the weekly Taxol is FAR easier to tolerate so far. I suppose if you didn't live near a hospital it would be a bind, or might not even be feasible. I'm not having any pain to speak of, except some shooting shocky type pains around days 3-5, but they are only occasional and momentary.
I'm certainly glad so far I'm on them. Had
#7 yesterday, so 5 more to go. Some people report the effects to be cumulative, and the second half is harder, so we'll see .....
Oh one se I suffered this week was Sun sensitivity. I went for a long walk on Monday, and forgot my hat. I didn't burn, but I did come out in slightly itchy sore bumpy rash on my face, and the back of my hands and arms. I also have to wear my sunglasses outdoors, as my eyes tear up, feel really sensitive to light, and also to protect from dust etc as I have minimal lashes now.
Hi Girls, I'm still here checking on how you are all coping. Congrats Irenee on last Chemo, I do understand how you feel, to buggered to celebrate! My nails Sarah are very ridged and gone white in colour, all broken, but not fallen off yet, but heard that can still happen after all treatment. Gay I had eyeliner tattooed on last year, so glad I did, I didn't look so bad without lashes, soon as I feel well again if ever, I will also get my brows done, eyeliner was not painfull at all to have done, totally reccomend getting them done. Morweena I hope weekly taxol is gentler on you than 3 weekly like I had, it hit me hardest with extreme bone pain 2 weeks after my last chemo, & 1 month after last chemo the bone pain is getting worse, I forced myself to go for a walk yesterday on the beach, suffered badly all night for it. Still have fluid retention and excessive tearing like I'm crying all the time, Does anyone else have this? I'm getting depressed a bit as the SE are not going away as I hoped. Have a small amount of fluff coming through on my head, but I'd say I'm still bald, hope it grows soon as I singed my wig fringe in the oven the other day lol .. Good luck Yvonne with no 6 it will be over before you know it, it's like we've all been living in a nightmare for the last few months. I totally agree Yvonne how nice it is to be able to vent our feelings here, knowing we all understand what we are all going through. Sending hugs to you all. Take care love Rhonda xoxo
I know how you both feel. I'm TN so no hormone pills for me and I'm scared that once the chemo and rads are over I'll be forgotten about and just left to cope on my own. Friends and family are already saying that I'll soon be free of the BC but they don't/can't understand how scared I am that it will come back. I check myself first thing every morning when I wake up and last thing every night before I fall asleep. I'm paranoid that every ache or twinge means its spread. It's driving me mad.
One thing though, I really don't know how I would have coped if I hadn't found this place. It's good to be able to be honest about my thoughts and fears and know that you all understand and won't tell me to "be strong" or "stop worrying". I think that without you, the suicidal thoughts caused by my bad reaction to the steroids may have come to more than just thoughts. Thank you all just for being there.
Know hoe you feel about being frightened by it all Morwenna....some days it gets on top of me. I have finished chemo but I have no safety net as I tested negative so can't take the tablets. I have future scans ahead and I dread them.
Hope all goes well for you on Friday Chicita...not long to go now. Irenee xx
I didn't lose lashes and brows on my four rounds of AC, but since I started weekly Paclitaxel (Taxol) they started, and now I have literally a handful of lashes, and almost no brows.
Earlier in this thread I posted a link to the eyelineher blog, or you can Google it. I think this girl has Alopecia, but she is SO pretty, and has some good tips!
My nails did the peachy colour thing, in rings for each AC, but they look much paler at the bases now on the weekly Taxol. I think the lower dose is gentler than having three week cycles, but the effects are cumulative. I'm starting to get numbness in parts of my feet, though so far my hands are ok.
My toe and fingernails do feel tender, and so does the hair that has grown (well never fell out originally) on the top of my head. I think I am continuing to lose that, but I have new dead white hair on the sides, where I was previously bald. I threatened to shave it all off again, but hubby doesn't want me to, so I'll give it a bit longer and see if it shapes up!
I was really teary yesterday, seeing that we had a death on here, (Margaret, rest in peace), and also on the American site. I didn't really "know" either of them, so, while I am sad for them and for those they leave behind, I have to admit my reaction was at least 90% about ME. It scares the crap out of me, to be perfectly honest!!! I was reluctant to post that in case I offended anybody, but I guess this is the best place?
I'm wondering if I wouldn't be better to leave both forums alone, but I guess I am a bit addicted. The support here is very helpful, and I like to give back too, when I can.
I wore myself out exercising yesterday, and trying to push my dark thoughts away, and I don't feel so distressed today. Actually today is treatment day, #7 of 12, and I haven't done much else.
Tomorrow I have my first appointment with the Calgary Breast Cancer Support Foundation, and I'm hoping they can help me get my head in a better place, and see me right through to post-treatment and recovery, reconstruction options, and back to work etc.
Congratulations to all finishing chemo. I am planning a trip back to UK to visit my elderly parents tween chemo and rads in June/July. I think the thought of that is making me all emotional too. Seeing them after a year,.... and having to say Goodbye again. 😞
Good Lord, I wrote an essay ..... and all about me. I'm sorry girlies!
I went for bloods today fully expecting to get knocked back a week as I have for 4 out of 5 previous Fec treatments but although my white count is just under the minimum level today they reckon I'll be ok for Friday so roll on FEC no 6 only another 2 to go after that
Hi Pauline, I have finished chemo but I am not going on to have Rads so I can't help on that one. I'm sure someone will be along soon to help you. Thanks for the info on the brows and lashes, mine have nearly all gone so it might be too late for me. I might try your idea Gay and have them tattooed on if I can pluck up the courage...xxxx
Hi Ladies just popped over from April thread as trying to get an indication of timescale after final chemo before rads start, think it is around 3/4/ weeks. Can someone help?
GBC - I was recommended Talika Lipocils for lashes and brows, it's from Space NK. I have had 2 cycles of FEC so far (3rd cycle next week and so far have not lost brows or lashes. I have been using the product almost from the start of chemo. I know it is early days for me and they could still go but so far so good.
Yes - toe and finger nails both affected. Toes are worse, all except two are black and purple and nails are raggedy and peeling back as well. They used to hurt but seem to be OK at the moment, they just don't look very nice. Someone suggested a pedicure but it would be a complete waste of money at the moment as they would probably fall off completely!
Just been for a long walk across the fields behind our house (I had to turn back after 10 mins yesterday because I was so exhausted) but today was a lot better. Had a call from hospital in Oxford to book my radiotherapy planning appointment for Friday - ooh ah another section of treatment will soon be under way. Good news but yet again it's into the unknown and a bit scary.
Oh yes, I've made a decision to have my eyebrows tatooed on just as soon as whatever hair is going to grow back makes its presence felt. Seen lots of rave reviews about a lady in London and as my eyebrows were very patchy anyway due to over-plucking in the 70s I think it will be nice to have a consultation and see if I can get a half way decent looking pair. Drawing on little dashes with a sharp eyebrow pencil has been quite effective for me in creating falsies so I can see that tatoo lines along with existing hairs could be the way forward. I may look better than before, just a bit older. Then it's just a new head of hair, the boob reconstruction (with tummy tuck if at all possible) next year and everything will be back to normal!!!!!! I wish. Love to all. Gay x
Thanks for all your advice ladies. I've used the lotion already and it doesn't seem to have hurt my hair. Gay, my hair is up to an inch in places but I used the cold cap. Balding on top mind!
hope tomorrow is better Airline Lady.
poor you. my kids used to bring nits home from school regularly. they were finally tracked to one particular child whose mother refused to treat them as she claimed they were god's creatures! the school nurse finally did the treatment as all mothers threatened to keep our kids off school. that was 25 years ago, i expect the nurse would have been charged with assault now.
have you tried hair conditioner. Put onto dry hair leave for a few minutes to stun the little beggars ( conditioner coats their skin so they don't move so quickly) then comb out with a fine tooth comb. Wash hair afterwards. You may have to try this every 3 - 4 days for a few weeks to get clear.
All the best Pat x
Oh Sarah how horrible. How long is your hair at the moment? I had years and years of head lice which my three children constantly brought home. It was such a relief when they left school! Be careful with any treatment you use as I seem to remember the lotions being very toxic. Maybe you can just comb them out and then exterminate! Gay x
I bet you don't come across this very often - the chemo patient with head lice! Thanks dear daughter. Who'd have thought the suckers could cling to what little covering I have. Oh well it least it's something different to complain about!
I'm still here too, although I have defected to the February Valentines as my chemo has been delayed so much. Even some of them are finishing treatment before me, it just seems to drag on and on.
I'm here too, and doing well. I've been to deep water workout twice this week, and just come back from a lovely long walk with a friend. Lovely sunny day, the birds are singing and my hair is growing!!
I have had 6 of 12 weekly taxol now, and minimal side effects. Only occasional shooting pains on some days, my nose tends to be bloody and crusty, my nails look a little odd, but that was mostly from the Adriamicin/Chlorophosphamide I had for the first four cycles! I do think I am getting a bit of numbness in my little toes mostly, but the fatigue is not too marked!
I recently discovered a website called breastcancer.org, which was the one I think I was actually looking for when I found this one!!
I'm kind of in the process of defecting because it is mostly North American/Canadian ladies, and I've already connected with more ladies who are on the same regime as me, and some quite local to myself! - so feels more relevant to my situation ......
Anyway, there's no problem in subscribing to both, I guess 🙂
I'm here too! Day 11 after last Tax and this is the first day I've felt on the up. Only one ibuprofen today rather than three lots with codeine aswell! It's good to know all those horrible effects won't be back.
Roll on next week for you Gay and fingers crossed tomorrow will be brighter for you Jenny.
I'm here . . . day 4 of final chemo (Tax 3 of FEC-T) and how right you are Jenny. Even I forgot I still had the SEs to cope with when I had the last poison pumping on Wednesday. I've remembered now though - spent most of yesterday in bed and not going very far today either. Mind you feeling very upbeat every time I remind myself that it will all be over very soon. I just hope none of us ever have to do the chemo regime again. It's tough! Mind you we've all had lots of advice and info from fellow victims so it may be slilghtly easier?!?!?
Oh dear, back to bed for me now. Can't stay upright at computer for too long and need to go and wallow. I wanted to spend some time on the website gettting tips and advice about regrowing eyebrows and eyelashes (does anyone know what the name of the products are that help with this - some names like Maxilash were mentioned at the Look Good Feel Good workshop?) and coping with 5 wks of rads. Oh well, tomorrow is another day .....
How and where is everyone??????? I am day 12 post tax 3 so chemo over but still not very good tired mainly and fed up with everyone thinking i should be feeling great cos its over they forget the SE still happen even on last chemo.