Hi to you both,
Had my appointment today at Christies,(very famous up here,in fact they cured my hubby of kidney cancer 57yrs ago)(he was only a baby!)
was seen immediately,asked did I want to start tomorrow(yes please) then I was marked up,given the secret code to the radio therapy car park on sent on my way,all in less than an hour. We walked through out-patients on the way home,dont know about swine flu being pandemic,think its cancer. Felt quite sickly when I got home, thought it was a nervous stomach thing but then hubby got diarrhoea,
was actually glad it wasnt just me,doesnt that sound selfish. Got me wondering,Lizzy,at what point do you start consulting the G.P. again about what may or may not be routine stuff? I have got a short-tempered,not at all compassionate G.P.who I cant build up any rapport
with. Another thing I`ve thought of to ask(anyone)the rads.doc said if my skin got too burnt,they would simply stop,has that happened to you? Cheerio,better have an early night,have been warned about the tiredness,still not sleeping great since op. Love Mags xx
Morning both,
Wow, result, Mags - sooner you get started, sooner you get finished! How many sessions are you having? My skin got quite pink quite quickly, it now looks very suntanned in a perfect oblong shape - that must be some strange bikini to get THOSE tan lines! I did get sore in the crease under the boob and the nipple was also very tender. Up until a week post finishing, I would say the discomfort keep increasing, the last couple of days have been better. Think the corner has been turned!
Bras - yes or no? - No, due to the skin discomfort, really sore under boob especially when hot; but Yes - as the actual breast tissue ached and the lack of support made that worst! Think this is a situation where smaller boobs have the advantage as can more comfortably cope braless.
Rotten when you don’t have rapport with your GP, isn’t it? Is there a more sympathetic partner within the practice? I have seen a female GP at mine - but only for sick notes - when I first went in, she didn’t know anything about it! All the letters from the hospital - diagnosis / treatment /op dates - had been scanned in to my computer record, but, presumably, without any of the GPs being made aware!! Suppose in the past, the letters would have been opened by GP’s secretary, then put in a pile for GP to peruse and action if necesary - might have even justified a courtesy call to see how I was coping! - obviously far too busy to be bothered with things like that now! Targets to hit…forms to fill…money to be made…Don’t get me started!!!
I think, we will all be frequently visited by Captain Paranoia for the forseeable future, any health niggles that we would previously ignored / coped with, will become magnified - we are bound to feel the need for more reassurance than before. Perhaps the BC nurses might be best bet - mine were certainly keen to point out that I should not hestitate to contact them even after active treatment is done.
Have a good day, both - catch up soon
Lizzie M
PS Jeanie - arm and shoulder is fine - but I didn’t have nodes checked (they don’t for DCIS at my hospital - almost wish they did - just in case!) - is that why yours is bad?
Hello Lizzy & jeanie,
Hope youre both o.k. as I am,so far so good with radio therapy,had my best nights sleep for ages,not going very "tanned"yet,do they up the rays as you progress? Jeanie,do you have an appointment tomorrow? If so,good luck,are you like me,awake all the previous night? Were always amazed at how busy our Manchester cancer hozzy is,and judging by the age range we saw,it makes me count my blessings to get to 57 before I got any bad health.Yesterday was on the point of asking to try a different tablet(Im on Femara)was having sweats almost to the feeling of fainting plus awful joint pain,today Ive got a spring in my step,Im more accepting of the explanation of nerve endings causing the pain under my arm and behind my shoulder blade simply because EVERYONE says the same,they cant all be wrong.Also think
spending too long on this site doesn`t help,an imagination like mine is a curse not a blessing,Am only allowing myself to go on before lunch or I take all our young friends problems to bed with me.
love to you both Mags xx
Hallo both,
aprehensive about appoint; tomorrow.9.30
Still not sleeping, waking in pain everytime I turn over.Cant sleep on op site, tried and it made me worse.Concerned that they might pospone the rads because I still cant move arm properly.
Just received another bouquet of flowers from people I used to work with and met some friends last night for a meal out and they bought flowers and chocs.House is full of flowers again thank goodness.
Wonder how long this discomfort is going to last with our arma and shoulder Mags?
Yes there are off days and better days.Pain wears us down though doesent it?
I’d love to get back to routine with me back at work and husband in a job.Maybe soon.
Jeaniex
hi Jeanie,
so sorry youre still in so much pain,Im just about doing 30-40mins on op side in bed then wake up in pain again.Yesterday when I went
for my R.T.I didnt have any pain in my shoulder blade but that awful metal bed set it off and I had it till I went to bed. Think warmth helps but cant cope with getting too hot,flushes and sweats dont need any encouragement. Do you take any painkillers at bedtime or a sleeping pill,I got some s.pills when I got diagnosed,theyre only mild and appear to mix with anything else I get given,can thoroughly recommend them, "zopiclone" 3.75mg,no grogginess next morning either. I met a lady of 79 in the waiting room who had her mastectomy 3 weeks before me,she put me to shame,she looked wonderful,she was on her 9th R.T.and had no unpleasant reactions. Maybe theyll give you some physio to get your arm on the move before R.T.,are you well healed along your wound? Over and out,good luck with appointment,
love Mags xx
Hi both
Sorry, Jeanie - belated Good Luck for appointment - hope it goes OK. The pain on op side is ongoing - I still wake up on that side conscious of it…but it is improving.
I had a very patronising telephone consultation with a company occupational health nurse yesterday…could have got cross, but occupied myself by writing rude comments for my husband to read, whilst smiling and saying “yes, yes, OK, yes, fine…” into the phone. Hey ho!
Hope the rads go OK today, Mags, be nice to have a couple of days off?
Take care, both, have a good weekend if I don’t catch up later
Lizzie XX
Mixed reactions after onc appoint;
Told me it was hormone receptive so prescribed Tamoxifen. Loath to start this.(already posted about this on treatment link).Are you both on this and what side-effects have you had? 5yrs seems a long time for something that might come back anyway.
Onc concerned about range of movement in arm.Expected this reaction.Said that I might not be ready for rads and only other alternative would be a mx!got couple of weeks to get sorted.
Cancer was a stage 2 and lump 17mm.
Jeaniexx (busy pondering)
hello you two,Jeanie,can understand your mixed emotions after visit to onc. My hubby thought I should be skipping & dancing after my visit but still didnt feel like that even after he said hed got it all,Im not on tamoxifen,Im on Femara.So have you no idea when you start R.T.? Lizzie,youre right its nice to have 2 days off but theres nothing unpleasant about it and Ive met up with some of the girls who ive met along my journey,nice catching up with them and no horror stories. Re:tamoxifen Jeanie,Ive just sold my little "blue rinse"salon and over the years(29)Ive met many ladies who had breasts off and then been put on it,never known any of them to complain about it,maybe their generation is more stoic than ours or it could be the old adage;"a little knowledge is a dangerous thing",my customers just did what they were told and (eventually)got better. Have a great weekend,Im geeting my hubby out of bed now,he`s got the vacuuming to do.
Love Mags xxx
Hallo Mags,
Got a second opinion from GP about tabs.Looked positively disinterested and then said take them.
Thats what I’m doing.Took my second one this morning.Woke with nausea at 3am and itchy skin but too soon to now if it is fromthe tabs or a one off.Will keep a eye on it.
Exercises still not improving my arm pain or range. Not looking positive for rads.New meeting with onc next wednesday who will tell me then.
Going with the flow, as they say?
How is everyone.
Jeanie xx
Hi Jeanie, Im glad you decided to take the Tamoxifen,like I said Before, Im seen so many ladies whove completely recovered on this pill during my years as a hairdresser. Im on for my 9th R.T. today,its been a walk in the park compared to chemo. Went to a special exercise class for women on R.T.,not vigorous but theyve made my shoulder ache,thats been outweighed by all the nice ladies Ive met,so many encouraging case histories have made me believe Ill soon be fighting fit again. Is it looking likely that youll have more surgery,will you get to know on your next visit? Im not surprised you have trouble with the exercises,my hubby has your complaint and he cant do my latest lot of movements. Also,according to the physios,us girls should be a lot kinder to ourselves;e.g.; no vacuuming,no carrying shopping,no mass ironing sessions or window cleaning plus never put our affected arm at any risk of cuts,burns,bites etc. Its going to be the lame leading the crippled in our house! have a nice (painfree?) weekendif you can,Im planning 3 weeks in Spain mid July,but no swimming in the pool and stay out of the sun is the radiographers`advice,oh yeah right!!!
Lots of love Mags xxx
Hallo Mags,
What does Femora do? Is it the same as Tamoxifen.
Always cautious about any new meds not just this one. Its because I am part of the medical profession myself and now that mistakes happen.
Arm still not cooperating. Resigning myself to probably not having rads.Dont want any more ops so hoping this Tamooxifen will do the trick.
Yes there are a lot of encouraging cases so we need to focus on them.
Your rads seem to be going fast.How many more?
How our weather changes!Pouring down and yesterday we had to keep out of the sun!Makes England so interesting!
What part of Spain are you going to?
How long after rads do you have to take all the precaucions,no vaccing,carrying shopping etc;?Not that I do that anyway!
Jeaniexx
Good morning Jeanie,Re:-Femara,my Onc surgeon prescribed it 2 weeks after mx,said it was very effective and well tolerated so I have told myself its the new improved version of Tamoxifen,if anyone would like to put me right,feel free. Also its about the most expensive one,hence all the posts about G.P.s being so reluctant to prescribe it,my (not very nice)doctor said it was a hospital only presciption, my BCN(lovely)said “shall I slap her or will you?”.
My R.T. is flying by,didnt get really tired till yesterday also got itchy but H.& Bs Aloe vera gel is brill.All the advice about not hoovering etc. is for life if youve had lymph nodes removed,even never having B.pressure taken on affected arm. If I didnt have such a wonderful hubby,think Id be claiming D.L.A.cos theres so little you can do safely. At the exercise class the physio advised against doing anything repetetive,one girl said she was a checkout girl, was advised to change her job.Did you have L.nodes removed,I met up with you post-surgery so cant remember.Its our own house in Spain so swimming and sunbathing arent a priority,its not in any travel brochures so nobodys heard of it,it is in the province of Alicante,
Orihuela Costa. Its got 2 hospitals,Ill take my european health care card and Ill take some broad spectrum anti-biotics in case of
any infection. My biggest worry is mozzy bites,will take loads of repellent and were driving there so,God forbid,if Im really ill in any way we can be home in 28 hours. Forgot to say,what causes you to be so reluctant to take Tamoxifen,is it weight gain? Another point I came up with is that the 1000s of women who are sailing thro this awful illness are unlikely to be joining this site are they,I only joined when I got a few problems. Take care,have you considered using a hot pack before attempting your exercises?
Love Mags xx
Hallo Mags,
Bet you are looking forward to your hols.
Appoint; with onc again tomorrow.Still no range in my arm AND GIVING ME LOTS OF PAIN IN THE SHOULDER JOINT.
Hasnt it been hot and wet?
Road as looked like a river lately.
Off to the Isle of Wight on Friday for a couple of days.
Yes, had 2 nodes removed but they were clear thank goodness!
Will look into the Femara, although no apparent side-effects to the Tamoxifen(touch wood).
I must admit I was sure that after surgery and rads that would be it so not happy to have meds for next 5yrs to remind me of the cancer!Wanted to pretend that it had not happened and get back to ‘normality’.
Look after yourself.Dont overdo the exercises.
Jeaniexx
Hi Jeanie, expect youre quite worried about your appt.tomorrow,do try and post me before you start packing.Im sorry your shoulder is still so sore,with me its the back of my shoulder blade that causes a lot of pain,when were in the car,I have to sit slightly sideways or else it hurts and I still have a crampy pain from middle of my scar to top of my ribs. The R.T.is still going well,just a tiny bit itchy and im getting more tired but yet not sleeping well,thats possibly the weather. Whats your work situation,have you finished or are you on the sick? Have been doing some reading up on Femara, it claims to be (proven)to be slightly more effective than Tamoxifen
on early stage b.c.,hope it helps me even though I was classed as advanced. Take care and good luck for tomorrow,love mags xx
Hallo Mags,
Went for my appoint; today at the radiotherapy dept;Not at my local Hosp; so hadnt a clue where we were going, the area or the layout of the hosp; itself.
Very very hot and a half hr wait.Lovely unit with nice comfy chairs.Had its own garden and cafe.
As I suspected although they got me ready by the scanner, they said I couldnt have anything done because I couldnt raise my arm enough and I was in pain.
Had to get dressed and speak with the doc.Doc said that I would have to come back in a fortnight and they would sort out the physio:Said that if I left things as they were now that there was only a 15% chance of the cancer returning and that if I cant have the rads it would be OK because it would only improve it by another 2-3%.He then talked to me about ovarian ablution trials. Said it would mean me going back there every month for injections.Said no.
Unfortunetly my hubby had to leave before this so I had to make my own way home via 3 buses,took 1 1/2 hrs and the heat was unbearable!
Got home and the Breast care nurse rang to say I have appoint; for physio; tomorrow.
I am off sick at the moment and if I dont do rads I hope to get back there fairly soon, as soon as I can master the buses and not need to rest neck so often.
Are you still working?
Glad the rads are going as best they can.
If I dont post again till next week it is because we are going away for the weekend.Hope it cools down I dont like the heat.70 is about my maximum!
Look after your self.
Jeaniexxx
Hi Jeanie,what a wasted journey for you in the heat,its bad enough
going somewhere nice but to get there and get told no,what a bummer!
I didnt have to have my arm up when I went for my R.T. planning, just put it on my hip and the machine whirled round me. You shocked me with that figure of 2-3%, thought it would be a lot higher than that. I had a terrible evening,I was on the point of taking myself to A.& E.the pain at the back of my shoulder blade was unbearable and it was starting in my other one,the top of my shoulder was aching plus the expected difficulty swallowing,added to that my remaining boob was sore and throbbing,woe is me,my hubby didnt know what to do with me. Got 6 hrs kip,seeing a doctor at R.T.today,will pour out all my troubles,if he says its nerve pain Ill scream(or kick his headin)! I had sold my little salon with a view to going to Spain 17 days before dx and so I get E.S.A.(contribution based). Dont know how long they allow me this,couldnt face looking for a job right now. I`ll wish you happy hols love Mags xx
Hallo Mags,
Sounds like you have had a bad time of it!
Did you speak to the doc,what did he say?
Good job you didnt go to Spain and I’m sure noone will be expecting you to go back to work until you are ready to(or wont to).
Went to physio; today.Told I have frozen shoulder and she wants to inject it before we go away tomorrow. Given totally different exercises to what I had been doing which dont hurt so much.Said it could take up to 18mths for it to get right!Usually caused by trauma-op in this instance I sopose.
She was going to see the consultant so rads look definetly out.
Anyway hopefully the injections are going to help me with the pain lets hope they can do something simiiar for you.
Hoping for a cooler night so we can all get some sleep!
Hope you get sorted today.
Jeaniexx
hi Jeanie,
sorry for not replying,the road to hell is paved with good intentions so they say. Im glad you got a non B.C.diagnosis for your shoulder,my hubby had an injection in his shoulder,think it was cortisone,gave him a couple of years of relief,hope it works for you. Good you got new exercises,hope you can keep them up,they seem to help me. When I saw the doc last week and moaned about my back pain, she gave me some Diclofenac,took one after lunch then another at bed time. Big mistake,spent whole night puking up cos of taking it
without food. Saw another doc next day,she thought I should have a
bone scan,specially since the only scan Ive ever had was on diagnosis day and that was only an ultra sound. On the whole,the rads have finally made me feel as bad as the chemo which I wasnt expecting,Im completely lethargic and queasy,aching all over and my appetite is very poor. Also holiday plans are now changed,I told the doc I was away from 12th-26th July,bone scan appt.came today,13th, at least it will be done,told results take 6 weeks so no need to rush back. Did you get to I.O.W.? You wont hear off me now for 3 weeks,take care, love Mags xxx
hi Jeanie, we didnt make it to Spain,we put it on hold till Octoberish,the burn on my chest got worse & worse,looks like Ive been branded,plus my back was murdering me. The thought of the drive
was too daunting plus I would have had to stay indoors till dusk,
no pleasure in it at the moment. Wish I had been warned how grotty I would feel from R.T.,the consultant had said "the worse thing about
it is finding a place on the car park ",ha ha,hes obviously never had it. Im just starting to feel human again after being finished for 10 days but chest burn has a long way to go. If it leaves a scar,
that will be 80% of my clothes going to the charity shop. So how`s life treating you,is your shoulder any better? Did you get away?
Bye for now love Mags xx