i am doing fine since my last rads EXCEPT i am now being woken up at night with very painful hands going to go back to doctors again i cant live with this it hurts so much, read up on carpol tunnel and i have all the symptoms of that.
My brain scan showed nothing of any great concern, other than an empty sella in my petuitary gland....or something like that....I didn't quite understand and the Oncologist was only reading from a report and as it wasn't his particular speciality, he wasn't sure whether this could be causing my dizziness so has gone off to liaise with a neurologist/endocrine person. My previous EGC's have shown a 'blip' on them. Not something that has rung any alarm bells so far, but looks like I am going to be referred to a caridologist for further investigations. As yet, no real answers to why I'm so blooming dizzy all the time, but have been told to stop Tamoxifen (again) for a 4 week period to rule in/out once and for all whether that is the culprit. The saga continues and until I'm fit enough to return to work, the groundhog days roll on.
Cress, I feel worse now than I did having chemo, so sympathise with you NOT feeling like you've had your weetabix.
On the plus side, I have a thick crop of very short hair now, and my radiotherapy burns (one on collar bone and small one on neck) are fading daily.
Still wittering on about my thyroid. The Oracle needs to research everything. There is a link between menopause and thyroid problems. I have been plunged into chemo menopause. Something for others to be aware of. I am more knackered than I was on chemo and my recovery after FEC-T was much better than this. So if you are so tired you can hardly move and they tell you that it's "normal" get your full thyroid function tested.
I hope the silence of the thread is cos everyone is having a great time post cancer and has much better things to do.
BC - well that burst my bubble. You are right, of course. I have now read several acedemic articles about interpreting thyroid function tests. It is my level of thyroid stimulting hormone that is low. The thing my GP seems to have done wrong is tell me a load of guff (presumably an attempt to reassure me) about why it might be low. No reason to suspect a period of over active thyroid that is "putting itself right". Low levels of thyroid stimulating hormone lead to the brain getting less thyroxine than it needs and, thus, you are knackered. It can be caused by a long term chronic illness or the use of opiate based pain killers (and some other stuff that I havn't had). The recommended way to proceed is to retest in 4 - 6 weeks before making any diagnosis. Sometimes GPs really do know what they are doing. They just need to resist trying to reassure patients with a load of nonsense.
Hi all Back from holiday and feel I've benefited from the change of scene and mostly from spending a week with my kids and their OH's. Weather not bad, never kept us in and we managed to get sunburnt and have a couple pf beach BBQ's outside our cottage on the really sunny days. All six dogs had a wonderful time. Complete freedom for a week.
Sarah, glad the op went well and that mentally you're feeling better. Cybele sorry to hear of the burns. I had no problems at all but I am only a modest C cup. Let's hope nurse Ratchet does something for you tomorrow.
I feel for you Shebelle having to endure constant dizziness. I hope you get it sorted soon, and Lisalouw good luck with the rads.
Cress - glad you're not diabetic. However I've never heard of an overactive thyroid getting better by itself - drugs are usually needed and I would have thought an overactive thyroid would have made you rush about and get pop eyes etc. It's usually an underactive thyroid that makes you slow and sleepy. However. a whimp you are not and it's great that no medication is needed.
QD Hope you husband has some luck with his interviews. Must be so worrying for both of you. Fingers crossed.
Feels really strange not to have any hospital appointments any more. Got the dengtal hygenist tomorrow and the dentist next week and then I have to have my bi-annual eye test so I'll still be kept busy. B
Good news Sarah. Both re op and about feeling better psychologically.
I have spoken to GP today about my blood tests - apparently it looks like I have had an overactive thyriod, but it is getting better by itself. Could have been caused by the chemo or the infections that chemo let in. I am so pleased because (a) I am not diabetic (b) there is a reason that I have been feeling so tired and I am not just a whimp and (c) it does not need medical intervention. So I might actually start to feel better now. I just need to get it checked again in a month to make sure. Woohoo.
Quick message to say WLE went well yesterday, actually a doddle in comparison to other surgeries I've had. Think the breast is a little deformed - I can see a shallow crater on the surface & the nipple points sideways a little, but hey, maybe not important in the great scheme of things. I'm actually feeling buoyant for the first time in ages!
My heart goes out to all of you experiencing discomfort with rads. Hang in there anyone who's feeling down, my 2 month depression appears to have lifted, counselling may be helping or it may just be time.
Good to hear positive results from Lisalou & QD.
Hi ladies , start my rads this mon , had my tattoos which the one inbetween my boobs is bigger than what I thought , looks like I've been attempting a home tattoo ha , my hot flushes are getting worse and had a few dizzy spells too , is this menopause or just post chemo ? I'm starting to really dislike my wig and hat , so so so warm , can't wait to dye my hair and get it cut into some sort of a style then the hat and wig will be kicked to touch . I've also been given diprobase cream and cybelle my friends breast broke out and she was given flamazine which is very good for burns , I've got a pain in my right ribs too , I'm sure I read what you all going through and give myself other symtoms , going crazy I think , just on my way to the park with my son and mum and dad to play crazy golf , going to try and stop at home for a few days and see how I get on , can't see me going back to work yet just havnt the energy , catch up soon I'm in the car writing this , lv to everyone xxx
Cybele - have you tried Flamazine? I know other girls used it for rads burns. I used it, not for rads burns, but for a severe steam burn I had back in the days before BC. Rads burns are burns after all. Your useless rads nurse should have been able to recommend a variety of creams and dressings if she could be bothered. Any mileage in calling the rads people again? Did they give you a number/helpline? Otherwise maybe just your GP surgery nurse could dress it like any other burn.
Sand - I have been prescribed stemetil which they give you after anaesthetics if you feel dizzy/sick, but it hasn't really helped. I am constantly dizzy, apart from when I'm asleep!
QD - I'm taking it really easy, not pushing myself at all, so definitely not overdoing things.
Had my head CT scan yesterday. Seeing Oncologist Thursday (had thought it was Wed) for results.
Feel terrible today and am very wobbly indeed. BC nurse rang to see how I was and I explained I felt worse. She didn't have any suggestions other than wait and see what came of Thursday's appointment.
I really am stuck and almost housebound because of this now and well and truly fed up. Have read many other people with similar problems following chemotherapy/radiotherapy but no real answer as to what the cause is 😞 If nothing is untoward on the CT scan then I'm guessing it's likely to be phsychological and if that's the case, then I'd dearly love to know how I can talk myself out of this.....urgh!
Sand - hope the dog ear gets settled soon. I also have peripheral neuropathy from the tax. I get my daughter to massage cream into my feet and it helps.
Shellebelle - I get dizzy too but only when im tired. maybe youre doing too much? Good news on the aneurism
Had a CT scan today and then because im Still seeping serous fluid I asked to see a bcn. she drained off another 20mls! Hopefully it can now start to heal because my rads appointment is this wednesday. Tomorrrow the OH has a job interview and another interview next monday. On the strength of those i bought a handbag today!!!!!!!
shellebelle - i suffered with dizzy spells and was prescribed stugeron tablets (sea sickness tabkets), and they did the trick - I do sympathise with u as it's a horrible feeling! Lisalou -thanks for that, wil get massaging eith cocoa butter. Cybele - any improvement yet?x
Flipping dizziness is doing my nut in....... having come through surgery, chemotherapy, radiotherapy to end up feeling like 'a puppet on a string' is more than annoying and it's stopping me moving forward.
Head CT scan on Monday - not sure whether I want something to show up or not.....aaaaargh. I am hoping it's an inner ear problem that can be resolved, although the tablets I've tried haven't worked so far. Follow up appt Wednesday with Oncologist.
Trekking between GPs, hospital and Oncologist more than ever these days.
Good news though - cardiovascular surgeon wrote to me to say that I didn't need treatment for the aneurism as it was small, but they will keep a check on it from time to time (I have an ultrasound booked for 3rd July) and was advised to just get on with my life as normal.....which I would if I wasn't wobbling about!
1 week post rads and still have small red patch near collar bone, which looks sore but isn't too bad. Other than that, skin pretty normal. Ribs just ever so slightly tender, but not causing any problems.
Tamoxifen - taking mine on a morning with breakfast, as I never forget breakfast 🙂 I don't know whether it's contibuting to my dizziness or not, but I don't think I'm having any SE's - maybe joints are a bit stiffer?
Am supposed to be returning to work 1st July but can't see that happening unless this dizziness resolves before then.
Love to all
Sand, I have numb and painful feet and hands from tax , it causes nerve damage called peripheral neuropathy , mine started on chemo 4 so I had to have a dose reduction for last 2, i was ref for paraffin wax to hands and feet which has helped but they have gradually got better over time , but also was told to massage with cocoa butter cream x
cybele - hope cream works , i think she used it and then put dressing on top. nurse in her doctors surgery did it for her after seeing state her boob was in after rads and hospital had jystvsaid it would improve in time!
qd - i take letrazole (does same thing as tamoxifen) last thing at night b4 bed, seems to b ok. As I mentioned, not sure whether numb toes is se of herceptin, chemo or letrazole - too many options!!! just hope they get sorted out eventually. Have just got appt for July with specialist re 'dog ear' under my arm which was a leftover from mx. bc nurse reckons it's not your normal 'dog ear' and i may have to c a plastic surgeon - typical!! will b glad to get it sorted though as it feels like a table tennis ball under my arm and hangs down - not a pretty sight!!! I don't really relish another op though!! x
Cybele - hope things are improving. Im doubly nervous now for when I start!!!
Lisalouw yay to fat necrosis!!! Do share any tips you pick up! Did my son panic with my gushing fluid? No! he's a teenager and merely moaned at having sticky feet!!! I suppose thats a good thing really. I didnt panic either cos i was in shock! Its still seeping a little bit but less each day and it feels a lot softer and cooler! As im already on antibiotics Ive not contactred the hospital and anyway I have an appointment there on Monday. oh the joys!
Cress - End of August should be ok. I have an apptment on July 8th - i presume its to discuss rads so hopefiully will be done and dusted by then.
Lolly - how could you NOT leave room for cake!!!!!!!!
Coyotegi - i agree Creess is an oracle!!!
Sand - now thats interesting about numbness. I had numbness on chemo then it went. my hands feel numb on tam!
Hi Cybele, not commented for ages, but read up on everyone fairly regular. a friend who finished rads in october had bad burns on her boob and said that diprobase cream worked where others didn't, so it may be worth a try, i think i used it for nappy rash on children a long time ago! I'm glad I'm not the only one who'se mind keeps working overtime, I wasn't too bad whilst having chemo, but ever sinceI think I'm becoming a hypochondriac! The Letrazole tabs haven't been too bad, few aches and stiffness.Most annoying things are numb toes, which bc nurse said was due to chemo, even though i didn't haveany nunbness til around 2 weeks after final chemo, and this last week my nails have started peeling! As I'm having herceptin every 3 weeks, I'm not sure what se's are from what! Hope all goes well for anyone still having treatment xx x
Hi, after a lovely lunch (which i am afraid went into afternoon teatime!) with Cress and lolly am renaming Cress " The Oracle". She was full of usefull info. Thanks for a great time.
Hugs to all needing them ( )
QD, can't believe what happened with the gush of fluid , what did your son do , did he go into panic mode , how does it feel now ?
Cybelle , sorry your having a rough time , my appetite comes and goes , but even when it's gone I can usually shovel something naughty in , i hope your skin starts to dry up soon , have you started the tamoxifen yet , does that affect appetite ?
Yeah , got results from biopsy , it's fat necrosis , which is where tissue has no blood supply and can happen during surgery , so got rads planning on mon , not sure if I'll have rads the wk after though as I've now got a wound where my biopsy was and it's still bleeding slightly , suppose I'll get to know on mon , maybe I'll sleep tonight as not slept since I found the other lump , had a dodgy tum in night too, must be nerves .
Ive found something called mynewhair , was on a leaflet where I go for my paraffin wax , at salons all over they help with wig cutting and styling , also advice on when hair grows back , eg colouring , shampoos ect , the salon nearest to me is in the next town and they do an info night , I'm going to try and go before I attempt to colour mine , if I pick up any new tips I'll post them on , lv to everybody xxx
Hi QD i take mine in the morning, just after breakfast i have a few hot flushes through the day and a couple at night not enough to bother me. Cybele, i have had no SE effects from rad except triedness i been very luck not lost appetite quite the opposite.
Ive had a lovely afternoon with Cress & coyotigi we must do it again soon. Next time i will save some room for a CAKE mmmm
QD - that sounds horrific, although also quite funny - had to laugh about the alien.. hope you're feeling better now.
My radiation burn is getting WORSE now that the rads have finished, which is making me very p***ed off indeed.
I'll spare you the gory details, but it's not very pleasant to look at and HURTS. Now spending even more time lying on the bed topless with my arm over my head as if I'm doing backstroke, as that's the only position that's reasonably comfortable. Itt limits my range of activities somewhat, though.
So much for me going into rads with a positive attitude and sailing through it... someone commented a few weeks ago on this forum that if you THINK you're going to have a bad time, then you do, which I found dubious - and I seriously doubt that I have suppurating radiation burns because I have an insufficiently positive attitude...
The other thing which is affecting me is serious loss of appetite - almost unheard of in my previous life history, even during chemo. I can usually eat for England! This is not exactly a problem, given how much weight I need to lose, but it's unnerving. Last night I made us a lovely curry for dinner, and ended up eating just a few spoonfuls of rice..
Has anyone else had loss of appetite with rads?
Sorry to hear you are haveing problems QD. i wonder when we will all be normal, and pain and discomfort free.
I Went to docotrs today to get some more Tamoxifen he has now put it on repeat prescription, lucky me.
He said that the numbness in my hands could be Carpol Tunnel (not sure of spelling) he dosent think its the Tamoxifen, so he has put me on Naprosyn which is for inflammation i hope it works as dont want to to be in pain anymore, i cant straghten my arm out it hurts so much.
Looking forward to seeing Cressida and coyotigi tomorrow for Tea and Cakes mmmmmm yummy .
hugs to you all
OMG QD, you just made me spill my coffee. The main risk with draining (and also exploding) seromas is infection so keep it clean and covered and go see a doc at any sign of infection. Now I need a new cup of coffee.
hello to everyone. Hamley - thats really frustrating re machine breakdown!
I had my 2nd dopler scan ystday and i dont have DVT. I have 2 scars - both swollen . The nurse drained the armpit scar but not the breast one. On my breast scar i had 2 scabs. One came off last week but the other i was leaving for it to come off naturally. The 2nd scab had leaked serous fluid a couple of time - so i normally just put a dressing on it. Today it was leaking again - i went to dress it and touched the scab which fell off. What happened next was surreal. It was like a waterfall!!! Serous fluid poured out squirting over my mirror, wall and floor. I was yelling at my son for a roll of kitchen towel - he brought me a sheet!!!! I had to have a really good clean up of wall floor etc and dress the wound. Both my son and i had to wash our feet - there was that much fluid and its really sticky! boob feels much softer now and i as Im already on antibiotics i havent bothered to phone the hospital. anyone else had a similar experience?
oh and tam has made me v tired, been nauseous but ok
Cress, well done for getting passed the withdrawal stage, it's no wonder you're feeling tired out after all you've been through.
Cybele, it was really great to read your blog again, it's like you've got a bit of your mojo back.
BC, I'm using FAST shampoo and conditioner too, for about a month now. I'm not sure if it really makes my hair grow faster, but I like the feeling that I'm doing something to help myself.
Lisalou, good luck for your results on Thursday.
Coyotegi, well done getting back to work.
Lolly, Maire, I don't get numb hands but they are very stiff and I have to flex my fingers a few times in the mornings to get them going. This happened in my right hand (surgery side) on the first morning after I took Tam and in my left hand as well a couple of days later. I saw my GP about this and other things (bone pains and lumps), she said its vascular and wasn't too worried about it.
My post from yesterday has disappeared. It hasn't done that for a while. Anyway, what I said was that my rads appy went really well and I was in and out in 10 mins, fab. Today my appointment has been cancelled again because the machine has broken down. It's so frustrating to feel you're on your way then be delayed, I know it's not anyone's fault and can't be helped, but my appts are going to go into another new week now and I can't orgainise anything to get away for a break because I don't know what's going to happen. I wanted to go away between rads and my second mx, otherwise it's going to be September at least until I can go.
Maire,i am going to see the doctor tomorrow as i only have one more tamoxifen left, was going to talk about my SE but they seem to have settled down now, i was feeling rather giddy, and hot flushes, also my hands go numb from the wrist down, but the giddyness has settled and i think the numb hands has something to do with my tennis elbow, but will tak to docs about it all,as for the hot flushes i think i will just have to put up with those.
My hair is growing very well nice and fluffy still but getting there.
Went to work today for a couple of hours went very well, going to do the same tomorrow, hopefuly start to build up my hours slowly. Cybele, well done on finishing your Rads, such a shame you have blistered, i have been very lucky so far i have used Aquios Cream through out and it worked for me, i know we carry on cooking for a couple of weeks after Rads finish so still slapping on the cream, and hope it stays ok, I hope you start to feel better soon, enjoy your drink you deserve it.
hugs to you all
That's a very poignant ending to your journey Cybele. Would've given you a hug and joined in with the tears if I'd been there. Contrary to the advice given to me, my skin did not worsen after radiotherapy this time round. Maybe I've been lucky.
Tamoxifen has been o.k ish for me. Warm flushes haven't been too bad. I just try to ignore them. To be honest I sometimes welcome them because I can at least kick off the duvet. Much of the time I am goosepimply cold so the odd wee hot flush warms me right up.
The only kind of bad bit is the mild insomnia. I find it a bit more difficult to drop off to sleep than before. There I am dropping my book as the words blur. I switch off the light expecting to drift off and thoughts go buzzing about my brain ad infinitum.
Then I wake at 5a.m. and can't get back to sleep. By mid afternoon I'm knackered.
The Tamoxifen also seems to take the perkines off my mood a bit. Not been too gloomy but my euphoric moments have been dampened down a bit.
Despite all that it's been o.k. Every twinge and ache reminds me that horrible things could be lurking in my body waiting to pounce, so I keep on taking the pills and hope for the best!
Hamley-Hope your bone pains turn out to be non sinister. It's a real worry isn't it. I have now convinced myself something is going on with my liver because I'm a bit tender on my right hand side but I think I maybe pulled a muscle when I twisted awkwardly recently so I'm ignoring it. I will be bringing a list of ailments to my next medical summit!
Lolly, congrats on finishing rads, how's the Tamoxifen going?
Shellebelle, hope all those scans find nothing but normallness! Then you'll be able to relax a bit...I find a stiff drink helps and I sleep through the flushes!
Mandy P, good luck with the race for life and the onc visit. let us all know how you get on.
QD-enjoy popping your pills. Glad to hear your margins were clear.
Cressida-Hope GP visit goes ok. I feel a bit lost in terms of ewhere to go next for advice. Think I've got a breast clinic appt and meeting with onc at some point but feel a bit cast adrift. Can't say I have a lot of faith in the good old GP's.
Lisalou-sounds as though the medical people aren't too concerned. I'd hang onto the fat necrosis theory if I was you. They usually have a good indication if something is more sinister.
Hair still purple. Have gone wigless a few times now but my shadow still looks baldy!
Well, first week at work and i am nackered! only doing 3hrs a day but surprised at how tiring it was. BUT and it is a big BUT, it is getting better and thats the light i would like to hold out to all who are still suffering.
I wish the hair on top of my head would grow as quickly as that elsewhere! could dye it and go hatless at last if only it would.
Hugs to all. X
Coming in from the march thread 5th chemo tomorrow, Cybele I fully empathise with you I am sure I will be the same. This experience has left us different people and personally I am going to struggle with moving forward I live in hope after talking to friends who are further down the road that this improves with time, please let us know how you get on and what tends to help I have been a keen follower of your blog.
best wishes pam
Well done cybelle on your last rads , I'm sure a meltdown is normal and I def will be having one of sorts when I've finished with all this !
Cress , I'll keep up with the simple , I've got a covering of hair on my bald spots , going to try colour mousse first and see how I get on , hope the doc can give you some energy , have you had a full blood count done recently to rule any anaemia out ?
I've been in breast unit all morning, re lump , had mammogram and ultrasound and biopsy , they said could be fat necrosis from surgery but I I'm not counting my chickens until I get results thurs aft , didnt think id have to wear one of those gowns again so soon , so no more sleep again for a few days , im starting to think I'm very very unlucky , but arnt we all on here , lv to everyone xxx
Lisalouw - I started using normal shampoo and conditioner as soon as my hair stopped shedding at 8 weeks just like Cress. Unlike Cress however, I had no problems whatsoever. I'm using FAST products and new hair does seem to be growing at a fast rate. Now you'll be totally confused with two of us giving opposite examples! Good luck with whichever you decide. B
Lolly (and anyone else) - Yay to end of rads Cybele - Boo to rubbish rads nurse QD - Yay to clear margins but double boo to cellulitis. Take the antibiotics. I presume the live cancer cells still had clear margins around them? Fab to meet you. ShelleBelle and Lisalouw - sorry you are feeling a bit rubbish. Don't worry about codiene withdrawal LisaLouw, I never had a problem with that. Oxy is a bit more hardcore. As for hair - I started using my usual shampoo once my hair stopped shedding after chemo and it just started shedding again. I have been scared to stop using Simple ever since, which is ridiculous in light of the fact that I have put colour on. I would wait until you can't see the scalp before using any colour, unless you want a head like Maire....
I think my withdrawal is done. The stomach pain seems to have been "fixed" by taking Omeprazole. Onc and BCN told me to go see GP, which I don't find helpful, but I am going on Friday. I expect it will be a waste of my time. I will also tell him how knackered I am. Feel like I am wading through mud to get through the day. Simple tasks are a huge effort and I have the urge to stay in bed. Urgghhh.