Thank you for bumping this up ragamuffin and your comments Lavender Lassie just going to back and read through this.
Hi Granny 22, I don't know what happened to all us oldies, but I am certainly more mature than most around in other parts of the forum so happy to start posting again here.
"Funny" reading through again and seeing the times I was upbeat and the blanks when I didn't post as so knocked sideways with fatigue.
Thinking about you waiting till the end of the month-that was a tough time, I remember, had that too.
I've only had 2 fec so far and no delays or or problems but two of the ladies whose wcc was down had to come a few days later and had to wait for hours before pharmacy sent the solutions up.Mine have been there and waiting each time.
Going to Haven centre on Monday to have makeover ! They say make sure you have somewhere special to go afterwards but I'm thinking of going linedancing!! Haven't been for a few weeks.
Take care and keep well everybody!
MargaretX X X
Poor you, Ju. A 30 mile round trip seems enough, so glad you don't have to do a 100 mile one again.
Like Cheryl I've found staff have all been great, but things have gone awry several times re - organisation and lack of communication between departments. Each time I go for chemo I remind them that I need injections to boost wbc and they find a doctor who writes the prescription and pharmacy have them ready by the time I go home. Last time - only one doctor around who was busy with someone on the ward. So I had to go back the next day to collect them. Nothing on my notes to say I had had them the previous two times. You really need to know what is supposed to be happening to you and remind them when they forget.
Good luck. Stella xx
I'm glad you don't have to make an extra 100 mile journey. I noticed that I was asked more than once 'what do you expect to be done today' and 'which breast was diagnosed' before I had surgery and before I was marked up. BCNs are generally pretty good about things like that.
A lot of the things than annoy and distress us as patients have to do with organisation, like the right notes/ scans/ x-rays/ etc getting to a doctor for the right patient and making sure that names aren't left off lists or pushed to the bottom of the pile.
Hope you get those results on Monday and that your surgery goes ahead successfully on the 21st.
I have been back to hospital again today for results of the MRI scan. I cannot belive what happened...me and hubby been laughing about it other wise think we would both cry.(tears may come later)
Consultant cancelled op on 14th Feb because he found cancer to be lobuler and wanted mri scan done.(done last monday)
He looked at notes today and said this is not right.......omg I thought its bad news........he said these results show a lump under your arm not in your breast and I know it is in your breast because we have done a core biopsy and mammagram shows lump also the ultra sound.......appears either the scan been read wrong or its someone elses scan.
He rang the person concerned straight away then sent email asking for a recheck.
He then wanted me to go back next monday for result (100 mile round trip again) BCN nurse said it was not fair and they would ring me on monday with results.......he has penciled me in for a lumpectomy on 21st March nurse will let me know for deffo on monday.
eccky thump what a palava
so I back in the waiting room (magazines are out of date)
hope every one else doing well
love and hugs Ju xxx
Oh no - just read the link and just when I thought I may get my hair back I am prescribed a tablet that thins the hair.
Oh well - fingers crossed I dont get that side effect!
Thanks Stella and Jo
I will read the link - like you Stella, I like dancing and would like to get back to it at some point. Too tired at the moment.
Sorry to hear about your delays - awful to have appendicitis at the same time. Good to hear chemo is now continuing
Here's the link to BCC's publication on Arimidex (anastrozole)
I'm 58, married, two sons 31 and 29 - both living back at home having lived away! I also had lumpectomy in September. Grade 3, vascular invasion. Have had 3 FEC so far and second tax due on Thursday. I should have finished my chemos and have started rads by now, but have had a total of 7 weeks delays so a bit behind - appendix problems - now removed. Deliberately not thinking about effect delays have had.
I will be having Arimidex too.
There is a thread somewhere about Arimidex. Also if you go to the home page and go to treatments on the left and then pick hormone treatments you can read about it - doesn't tell you much though. I believe aches and pains are a side effect - worrying to me as my hobbies are dancing and hiking.
I have not posted here before but have been reading posts with interest.
I am 53, divorced and have 2 daughters aged 16 and 20. I was dx in August with grade 3 invasive cancer, no nodes involved and had lumpectomy in Sept. Have just had 6 FEC so still coming out of side effects.
Onc has given me Arividex (not sure of spelling) to start in 3 weeks time. Can anyone give me any idea if there are any normal side effects to watch for. I am not good with any medication so prefer to know what I am letting myself in for.
Kirsty16.. Thank you for the comments on Femara only been on it a week and so far so good couple of "omg I feel hot" moments not sure about joint stiffness due to Femara think that could be RA wll see how it goes and in need be have a word with Rumey Nurse.
dancing girl.nice to meet you yes RA can be hard tocope with but I will get there.
The scan went well I was proud of myself because I didnt panic and make a show of myself but boy was it noisy lol.
That over next is app with surgeon on the 2nd March then hopefully I will have a clearer picture of what is going to happen
Thank you all for you support xxxxxxxx Ju
You are about a year older than me. I'm sorry you have to join this forum, but you'll get plenty of support. It's always a rotten time waiting for results.
My mother suffered from rheumatoid arthritis, so I have some understanding of what you are going through with that. It's so different from osteo arthritis which most of us suffer from to some extent as we get older. RA also means lots of drugs and drug tests, so you are unlucky to have to cope with bc as well.
Good luck with the scan.
Hello Sorry to read you are having such a worrying time just now - but remember that we all react to the different treatments - differently - some get more side effects than others.
On Femara - i took it for 4 months at beginning of last year and back on it now since November (musnt take it at same time as any chemotherapy). Thing is - touch wood, Ive had very little side effects, slight hot flush a couple of times (literally) and recently some stiffness in joints which exercise ( just moving around) seems to cure. sitting for long time does make me feel like old woman (that i am !!) so keeping active is the key - but it doesnt have to be huge amount, gently walking around is enough.
Hope that allays one worry. Also , as i understand it, they dont know exactly what we have till after the operation and the lab can fully analyse the tissue they remove - even if biopsies done. They may know its definitely cancer of course but not what type , which they need to know before deciding on exact treatment plan. so ... know this is impossible but try to give yourself time out and relax , and take one step at a time. With Best Wishes
I have been sitting on the sidelines reading posts plucking up courage to post.........think its all part of the prosess of admiting I belong here just being diagnosed with BC having read posts I now realise I am going to get a lot of support and information from you lovley people.
If its ok I will tellyou my journey so far...
I am 59 years old (big 60 in June) was called for my routine mammogram on Jan 17th.....got letter for a recall on Jan 28th went to Hospital hour and half journey away they were very nice had a ultra sound followed by biopsy in boob and needle thing under me arm
next app for 2nd Feb.went back surgeon said I had breast cancer but they needed to do a core biop under my arm.made arrangements for me to go back for this on 8th Feb plus a pre op assesment raedy for a lumpectomy possibly node removal on 14th Feb.....understood I would have a wire inserted in my boob to pin point the lump before removal.I was ok about this thinking ok if thats what they gotta do go with it also told I would have radio thing after.
went back for result of arm biop on friday 11th told it was ok.boy was I pleased thinking good come monday they gonna remove lump couple of arm nodes I be on me way.........oh no
Dr said goodbye see you monday and went out room nurse who was with me said .umm sit tight I need a word with him..off she goes few mins later he comes back and says ..sorry Mrs S I forgot its not what I told you........turns out its Lobuler not what he told me ..means I have to have MIR scan (booked for monday) dextra bone scan and he put me on tablets.Femara.saying I will go back to hot flushes .night sweats etc etc(thanks lol)
At this point I lost the plot the tears flowed until then I had been so strong thinking I can do this was like they told me op on the Monday got all sorted .he handed me the ice cream and as I took the first Lick he snatched it away.
I know he is doing what is best for me but omg the waiting is so hard
dont want to sound a winger but I also have other health probs Rhumitoid Arthritus... had to stop taking med for that ie methatriaxte injections and Humeria injections means I can hardly walk now and hands not working well
Lost me mum to BC in 2004 all playing on me mind
above is a copy of the post I put on before so you can read it.
not had too bad aday today hubby took me out for sunday lunch which was nice think he was trying to take me mind off the scan tomorrow.
will let you know how I got on .just hope I dont have a panic attack and make a show of myself
Hi Myrtleju, welcome.
I should copy it and post it on here, then if we haven't read it we can.
Best wishes, Stella
Hello new to this disscution CherylLT recomended I post here
bless cherylLT see you are also posting here xxx
Do I repost my story again not sure what to do oh heck dont want to bore you with repeat posts if you already read first one
I like the picture, Stella. I'm glad the appendix is sorted at last and you can get on with completing your treatment. Let's get it over with!
Yes, when I feel hard done by, one of the things I remind myself is that I am not alone and isolated and that my OH has been wonderful about driving me most places as well as to the hospital and back and tries to pick up some slack with meals and housework, although he's better at meals than clearing up after them.
I wouldn't have worried too much, except that I became exhausted and shaky very suddenly on Day 4 last time, and then had a bad dizzy spell during the night. I hope changing back to the earlier steroid prescription and resting more Days 1-3 even if I feel ok will help, but it's nice to know someone will be around. I can phone my son during the evening, but he works long hours, so it would need to be fairly serious. I only wish we had some decent shops a bit closer to hand.
Smiley - hope you get your lab results soon. Enjoy the time with your children and grand children - that'll take your mind off thinking about it.
Cheryl - Hope you are not feeling too bad after FEC3. It's nice to have someone around in the first few days while OH is away. It must be awful to cope if you live on your own.
My appendix was removed last Saturday, feel OK, but still a bit sore and swollen. Tax 2 should have been this week, but is now next Thursday. I'm so pleased it has only been delayed one week. It was a five week delay with all the appendicitis/ antibiotic/hospital thing between FEC3 and TAX1. It should really have been removed then. I also think delay need only have been 3 or at most 4 weeks if things had been co-ordinated better. However it is as it is, so hope there are no more delays.
Take care all. Stella xx
Smiley, I had some polyps at the neck of my womb before menopause, but none since so far as I know. Usually they were just nipped out, but I had a D&C once. All harmless but giving false positives on smear tests, the way cysts and similar do on mammograms.
Perhaps the rash is just from general wear and tear on your system; hope it clears soon.
Enjoy the time with your family.
Hi Cheryl hope you feel okay. Still plodding along. I am waiting for lab results on polyp taken from my womb. Feeling a little anxious but am sure it wil be ok. Also have a rash on my legs not sure what has caused it, showed the nurse at gp surgery but she didn't think it was anything and that it would probably disappear again! There's always something isn't there. Apart from that am ok and looking forward to seeing my children and grandchildren over the next week.
I hope everyone is doing ok. FEC3 today and trying to rest more than I did last time. My OH will be away most of the week, but DS and DD2 are going to spend a day each with me early on for company and just to make sure everything is ok if I have a wobbly like last time.
How are all the Golden Girls?
I've got some of the aquaeous cream already; so I'll be ready. I can try that and the moisturiser and see which works best, the moisturiser being more expensive. Some scarves slip more than others, I find. I have some cotton caps which are pretty hideous, but if I tie a scarf over the cap it all looks better and doesn't slip so much. I've been wearing the caps to bed partly because of the cold and partly so the bed isn't full of hair in the morning.
Take care everyone. It's still very gusty here, but at least not so cold as a week ago.
Hi Cheryl, I guess it does not matter which creams you use but Aqua was recommended by a doctor, (you can buy in Boots for not a lot a great big pot, and I used it all over until the rads, then was told to not use anything and it was okay too).
Yes I used baby shampoo and still do. My hair is longer now, but only about 1 - 1.5 inches and much darker. Will try and update piccy. I am useless with scarves and they always slipped over my eyes or off completely so took to a pull-on hat when I did not have the wig on. Never wore the wig around the house. Even wore a hat to bed in the cold weather. Felt like Wee Willie Winkie!!
I too had the dizzy spells in the first week after the chemo, FEC worse than TAX. So take it easy and it will pass. But I used to feel whacked if I tried any exertion.
Stella: Good to hear you are coping okay with the TAX. Light and the end of the tunnel now!
Take care Pat xxxxxxxxxx
Thanks everyone for your comments. Onc is going to reduce Tax next time and give me 5 separate injections instead of Neulasta.I don't think reducing the dose increases the treatment time. Onc was so kind and considerate and apologised "for making you feel so rubbish".
I'm pleased to say I'm feeling a lot better today and for the first time looked forward to, cooked and enjoyed evening meal. Did have cystitis symptoms for a short time but hit the water bottle and they went.
On the good days, doesn't it make you appreciate feeling well more, rather than taking it for granted?
Hope you'll all have good day tomorrow.
The chemo nurse told me yesterday, while she was cleaning and flushing the PICC, that the oncologist might consider reducing the dose of FEC if she thinks it is too hard on me. I am recovering now, so I would want to know if a reduced dose would be less effective, or would increase the treatment period.
If I know that I will just have to spend a few days in bed after each treatment now, well I can adjust to that. Maybe at that stage I need to drink even more water to avoid an irritable bladder so I wake and use the loo earlier and so don't jump up in desperate need. (That was when I reached the point of horrible chemical-smelling urine.)
You're right, Stella, we are more likely to have some other health problems, even if they aren't serious ones, and we are simply a bit or a lot less physically reslient than we were when we were younger. This was something I noticed when I had my third at 40, in contrast to the first two who were born a little before and a little after 30. Even those 10 years made a difference.
Annette - sorry to hear you had such a traumatic time. I feel I have got off relatively lightly with my first TAX so far. It's been harder than FEC, but I'm feeling a little better today.
Hope you have recovered as well Cheryl.
I read that our older bodies cope a bit less well with the chemo onslaught.
Best wishes. Stella xx
Cheryl I had exactly the same experience several times on tax-it is so scary.I once ended up on bathroom floor in a TMI situation 🙂
It is horrible.I had mine 4 years ago now though so hoping it did its job.
My goodness, Annette, I'm glad you pulled through all that. I had a chat with the chemo nurse while she flushed and cleaned my PICC line today, and she told me to be sure to mention it to the Onc in case I need the dose reduced. My heart sometimes seems to race a bit more than it used to, which might be the PICC line, but of course the more you think about that, or palpitations, the more you think it's happening. Just being older and being post menopausal means our hearts may need a little more care, I suppose. A friend of mine has angina, had a mild heart attack a few years ago and is being taken into hospital for tests next week.
Look after yourselves,
Cheryl - how scary having that happen to you in the night. I was called into hospital today (second time in a week after first c-Tax last Friday) after ringing the unit to ask for advice for:shortness of breath,no energy at all,white as a sheet and pounding heart.They thought I might be anaemic which would also cause dizziness and fainting. Was given echocardiogram,ecg,chest xray,blood test etc,etc.Verdict was body couldn't cope with dosage of chemo and the drugs had affected the electrical system of the heart. Was given beta blocker and given appointment to see cardiologist(was due for final appointment with him anyway as i had a stent fitted lover a year ago).So, it's worth telling everyone and getting them to check it all out.
Sleep well Annette
I haven't lost enough hair to wear the wig, and my scalp has been so sensitive I don't want to try shaving it yet, so I'm covering up. I look like I've had a short back and sides from a drunken barber. I'll remember about oiling my scalp, Pat; I was thinking of using the same moisturiser I use on my face. For now I pat baby shampoo over it every few days.
Hi, Cazzy, I don't know about you, but I sometimes feel I turned invisible sometime in my 50s. Are you still doing ok three years on?
only just read this posting yes i am with you on this.i had thr br cancer at 57 and i three years on now,wud be nice talk to the more mature lady.we do at times get over looked
Thanks Pat and Cheryl,
Hope you are feeling a bit better Cheryl.
I've had lots of digestive problems with TAX, but it's settling now so hope to put some pounds back on. Feel really exhausted though.
Pat, I wear my hats etc nearly all the time. Only wear the wig occasionally, but I find both very easy. Losing my hair never really bothered me. I'm not very girly so like you quite enjoy not having to make my hair look half decent. I must say you look fabulous in your picture - not sure I'd look that good. We'll see how it goes when it grows again. Actually with the long gap between Fec and TAX it has started to grow, but I'm presuming it will fall out again. Doesn't bother me either way. it seems so unimportant compared to everything else, but I fully understand why it is very upsetting for many ladies.
Hi Dancing Girl, so sorry that you were messed about with appointment etc. Cos you do build yourself up to the occasion and can quite understand the tears but glad it went okay in the end. Hope you don't have too many side effects. By the way I had bleeding nose occasionally with Tax, so beware. Can be sitting at the table or in bed!
I feel for Cheryl too with busy waiting rooms, I do think that priority should be given to patients, you don't really need an audience when you are waiting do you! I was lucky with no crowds and it seemed to be just patients waiting. Hope it improves.
Enjoy your wig, It is great to put on your hair without all the messing about, setting, drying etc. Do you keep your scalp oiled etc, with Aqua cream? Even now, (I finished chemo end of March last year) I still keep my hair really short and feel liberated not having to 'do' it.
Good luck to you all. Pat xxxxxxxxx
Thanks Stella, I started off pretty well, but then crashed into exhaustion and spent a couple of days in bed. The scary part was waking in the night needing the loo urgently and having a serious dizzy spell on the way. (Jumping out of bed too quickly?) I suddenly discovered I was leaning against the wall of the loo and it took a few seconds to remember how I got there and feeling dizzy, so I may have fainted, fortunately while sitting. I had to lean on the walls to get back to bed.
It's definitely taken me longer to recover this time, even though the queasiness was less, so I will discuss this with the oncologist next visit.
I'm recovering now, though, and even got through a hospital appt for an echocardiogram yesterday without getting too tired.
Hi everyone have a date for hysteroscopy it is next Tues. Will be glad to get it over with. The most annoying thing is I have to find a friend to stay over as I will be having a general anaesthetic and they say I must not be alone for 24 hrs. I hate aving to ask people although I am sure they don't mind. Hoefully nothing sinister will turn up!
it's really crowded in both rooms where I go and they are always really busy.
Finally had my first TAX on Thursday- feel a bit odd, but not too bad - expecting pains to kick in over weekend
Nearly didn't happen again. My onc needs lessons in communicating with admin.
Arrived at 9am for my appointment. Nurse came along at 20 past - they couldn't find my notes, but someone remembered they had been sent back to onc 'cos he hadn't completed the last bit about my bowel inflammation hospital episode. However they would try to get a doctor to sign it and they would ring me in an hour while we went off in to town. Got a phone call two hours later - Unfortunately onc was out of the country and his registar was on a course else where so they couldn't OK it and write up the prescription. Other doctors would normally be able to step in, but as they did not know the history of hospital episode would not sign it (which I fully understood), they would sort for tomorrow. I promptly burst into tears and after short conversation passed phone to OH. They said they did not know who had signed my appt letter. We said we could be back in 20 minutes with letter and she would do her best to get it for today. We explained everything to her and she saw a doctor who would sign it after contacting registrar who said it was OK. Finally went in for TAX at 2.30 and left hosp at 5.30 - they were really busy.
Hope you are all coping with whatever stage you are at.
Best wishes. Stella
Had FEC2 yesterday, with another annoyingly long wait in a crowded reception area. Some of the chairs were taken up by spouses, relatives or friends of patients--understandable where these were elderly people who had come a considerable distance, but this could have been better managed. (The chemo treatment unit has been moved from a very crowded area adjacent to the main cancer treatment reception area to a vacated ward upstairs.* I offered to wait downstairs for a while as I had a mobile phone with me. People with mobiles could also wait in one of the refreshment areas.)
The treatment, when I finally got it towards the end of the afternoon, went OK and the nurse also sorted out future appointments and my carpark pass while saline was running through the line, but by the time I left the unit, I couldn't get into the main reception area where the chemo pharmacy is without going outside around the end of the building. The receptionists in that area seemed to think this was somehow my fault and said the pharmacy was closed. It wasn't, fortunately, and my prescription was waiting for me.
But I was in no good mood when I got home. At least future appointments will be at 9 am, so I hope there won't be such long delays in future.
*If I haven't made this clear, we now have a spacious treatment area with a crowded reception area instead of a crowded treatment area next to a fairly spacious reception area.
Just thought I would pop in and wish all you golden girls with treatments or appointments this week good luck. I hope they all go well
How is everyone? I got my wig today, and the colour takes me back 10-15 years, before I aquired those highlights you don't have to pay for.
I'm back and forth to the hospital this week: blood tests and the Onc. tomorrow, a PICC line on Thursday (cringe) and FEC2 on Friday. I'm hoping to get in some retail therapy tomorrow or Wednesday.
I haven't had that procedure, but I had to have polyps removed a few times before menopause. It's worth remembering that as with breast lumps, something that comes up as not normal isn't always cancer. I hope you don't experience too much pain this time; it's bad enough while you wait and fear the worst.
After being referred to gynae by my onc due to post menopausal bleeding I had an examination and vaginal ultrasound, consultant said there was thickening of the womb lining and he would like to take biopsy to rule out anything sinister and most likely option would be polyps which they could get rid of in day surgery.He warned me it would hurt but it was awful and left me shaking afterwards Needless to say my mind has been working overtime with what if syndrome. Got letter today saying sample was too small for safe investigation. All that pain for nothing!!! They are now going to do a hysteroscopy to look inside and take a bigger biopsy. More waiting - I have to go next week for pre assessment as apparently I will have a general anaesthetic. No date yet for proedure. Anyone else had one of these?
Good luck on Friday. I hope the op goes ahead as planned and is successful. Just rest as much as you need; your son can always ask for instructions if he needs them.
(I try not to show suprise when my grown children demonstrate that they are competent adults.)
We'll be thinking of you on Friday, Val. Son will be fine looking after you - must say it seems more instinctive with girls, boys are really willing but need a little direction. I've got two sons whom I love enormously - my nieces are so different.
Hi Ladies thankyou all for your support. You've all been very kind and helpful. My assesment went very well so it's all systems go for Mastectomy on Friday. Please keepyour fingures crossed that there are no more cancellations due to 'flu. My eldest son is coming to stay with me for a while as I live alone (except for Rusty my Jack Russell Terror) I was quite surprised to find I will only stay in the hospital for one night so I hope my son manages all right.
Good Luck to all xx