hi to everyone, this thread is growing slowly but surely! I too would like to know about cream application, so i’ve written it down in my little book of questions to ask the radiotherapist who i’m seeing on monday. Otherwise i’m just hanging around doing not much but feeling that i should be as i may not feel like it when i got started on the rads. I’m really bothered by the hypersensitivity of my nipple, i hope the doc has got a solution because just the thought of anyone manipulating what’s left of my breast for radiotherapy is pretty awful. I know it’s not important on the scale of what could go wrong, everything is healing well, but it’s really getting me down and stopping me from sleeping. Anyonr actually started yet, or are we all just waiting - again…
Good evening
Gillyflower
Modurham
Rexi
bgboo
Moya
Ermintrude
Ladythatlunches
And now welcome to
Alanaa (never spell that right…and of course you are not an impostor…just a little delayed)
BerthaB
Tomsmam (I have a son called Tom too.)
I havent missed anyone have I?
I had my planning session today …took about 20 minutes …got 4 tattoos i think…proper stuff starts next Thursday so should be finished by 12 April! France doesnt close for Good Friday so only miss one day over the easter long weekend.
I have been advised to wash in Savon de Marseille and only use Almond Oil on my breast after the rads. Nothing else. But thats France for you.
Luckily the supermarket sells both cheaply.
So good luck to everyone …
Hugs
Mary M
Hi again, I’m having a mainly sleepless night , thanks to OH snoring:(
Came downstairs to sleep and was joined by the dog, who snores even more but i can’t get cross with her, she’s got a squashed nose, which my husband hasn’t! So it’s 5 in the morning and i’m waiting for the alarm to go off so i can get back into bed, thank god i don’t have to go to work! Mary, glad to hear things are moving, the 12th of april doesn’t seem that far away - i’m looking at the beginning of May, i wonder why i have got so much more than you? I’m feeling a bit down at the moment, daunted by the prospect of 6 weeks of my life dominated by appointments every day, but i know it is only 6 weeks which is not a lot on the scale of things. OH isn’t being much help, he had 5 weeks of rads for his colon cancer plus 3 sessions of chemo at the same time, and kept working, so i know he thinks i’m a bit of a wimp, but he had the operation afterwards.He hasn’t said anything so maybe i’m imagining it.Seeing as i need something else to worry about, I am not looking forward to hormone treatment; i’ve been told it will be Tamoxefen for the first 2 years then something else. The SE seem pretty bad, but then again people only post on forums if they’ve got them, we probably don’t hear from all those who are fine.Well i’ll stop moaning now and try and get some sleep. Love to all, Gill
ps My son is a Tom too!!
Hi everyone
Saw the clinical onc today - scary lady! - and am having my planning session on the 12th March with rads starting on the 23rd. Was surprised to be asked to sign a consent form that said she had explained all the risks and benefits when she hadn’t said a word! I asked whether it was OK to take supplements (Vit D3, Vit C and beta carotene) and she didn’t seem to care either way.
I am feeling more positive now that treatment is finally moving on. I had a massive infection a month after my surgery which put me back in hospital for a week and the wounds reopened and have still not quite healed five weeks later.
Thanks Firecracker for your advice on creams. Onc said use E45 but I might get some Radiance to try.
Moya xx
Hi there. Originally on January surgery thread, then March chemo but have decided aginst chemo so am now on arimidex and starting radiotherapy on the 19th March for 15 days ending on Good Friday. Good to join in with you. I love the sound of the savon de Marseille and the Almond Oil and soap, sound very glamorous compared to my bottle of Aqueaous Cream! Oncs all seem to have differnet ideas,I’m not to use anything else but see that everyone else has all sorts of creams they can use. Confusing!
Have been coping really well with all this horridness, but today happened to be somewhere with lots of people and suddenly had to “escape”. It was actually a Church so it was very embarrasing to skiddadle out, but was so emotional.It was out of the blue and I cried all the way home!!! Well I’m OK now safely back home but felt very vulnerable and overwhelmed. Anyway it’s good to join you and to be able to share the journey.
Good luck to all,
Maggie May XX
Oh Maggie May, how i recognise that feeling! Everything going fine, everybody saying how well you’re coping and then out of nowhere, floods of tears. It happened to me in front of a class of 10 year olds, I told them my cat had died because where do you begin to explain what’s really going on? Now i’ve left they have been told i’m “ill” but will be back and they didn’t bat an eyelid, they’ve probably forgotten my name already!(i only taught them 1 hour a week). Mary and I are in France, which explains the glamorous sounding soap and oil, but i don’t suppose it’s any better than anything else. I have bought a cream called Theta which is supposed to be brilliant (should be for the price). After last night I’m drugging myself up tonight, I can cope with anything life throws at me except lack of sleep. Love to all, Gill
welcome maggie may
…nice to see another january lady on here …if ‘nice’ is the right word - but you know what I mean.
just waiting now for next week …dont know what hormone stuff i’ll be taking yet and am not going to ask…will know soon enough!
has anybody had any physiotherapy for their arm yet? (assuming some of you have had axillary clearance)
I can go to a physio (havent found one yet) but would appereciate knowing what they do…massage…exercises?
Mary M
Hi Ladies
I had my Rads planning today, I start 13th March and finish 10th April. Not really looking forward to it as its 30 miles away in a busy town and most of the appointments are around 5 pm so will get caught up in the rush hour traffic. 60 miles round trip everyday for 4 weeks is doing my head. (sorry for the moan, I’m having a bad day)
Boo x
Hi ladies I’m starting rads on the 5th… This will be my third lot of rads… They will be to the chest wall having had them previously to my left breast 2 years ago and the right breast 5 1/2 yrs ago… I’ll be getting 20’this tim and had 25 each previously… So will be glowing like the ready brek kid by the time iv finished.
I haven’t had tattoos done this time as they weren’t sure if I would be getting rads or not so nt sure if il just need to wander around with pen marks on my chest.
Iv still got my Hickman line in since chemo but im getting it out on tues and will be restarting tamoxifen… Iv been on it for around 4 years so still have another years worth to take.
The hosp isnt too far just a 30min drive it just gets tiring driving there and back for a 10 minute appt.
Mary I’m being referred for physio as iv developed cording, although since I asked for the referral my arm is a little more swollen so not sure if it’s the start of LO too.
Take care
Lulu xx
hello Lulu34
‘nice’ to have you here too …I have read lots of your posts in other threads and will appreciate your knowledge …best of luck for this time round…
Boo
I have a long journey too but ‘luckily’ I don’t drive so My OH is taking me backwards and forwards it’s a 84 Km drive - about an hour -20 mins to the motorway then straight there …but its a beautiful drive.and allegedly we can recoup our petrol and tolls.
Mary M
Golly Mary M and Boo, you have a really long way to go for your rads. Boo am not suprised you’re unhappy with a 5pm slot with traffic etc. I’m really lucky then, Exeter is 13 miles down the Exe valley, so very close and a lovely ride down. Was doing some research on here into good creams for Rads and found Emu cream!and X something specifically for post radiation but in USA and only on prescription here. Lulu, you’ve been though all this before, wish you all the best for this round of rads.
Feeling better today but am now a bit wary of when the emotional thing may hit, Seems to have been since starting Arimidex a week ago, oh well onwards and upwards.
Hugs to all XXXXXX
Hello everybody !
I had my planning meeting yesterday at St Thomas’s. I start my rads on 12 March and finish 18 April - every appointment is around 5pm so I can continue to work. I burst into floods of tears as I walked into the department with hubby and felt a right fool - going somewhere like that makes it real - if you know what I mean - the lovely nurse said she thinks I have been in denial and I have to agree with her. I am a complete mess now - I dont want to work I dont want to go out I just want to sit on the sofa all day or stay in bed - I know I am going to be fine at the end of all this I have been very lucky when I read the forums on here but I feel like I am in a little bubble and its all a horrid dream. Sorry I am moaning - I just feel like rubbish.
x
MMay
They gave me 8am appointments first and I told them there was no way I could get there as I would have to leave home at 6am because of the traffic so they changed them to 5pm. I just shook my head and walked out. My OH thinks I’m over-reacting but I can’t help thinking they just don’t care. On one of the days I have herceptin at the same hospital at 10am which will take 2 hours. I told them the date so they give me 5pm for the rads, where’s the logic in that.
(sorry I’m still moaning and having a bad time)
Boo x
I remember when my OH had rads it was the same story, he got his appointments on the friday for the following week, and then spent ages changing them as they always seemed to be the opposite of what he had asked for (he worked at the same time). You start to think they do it on purpose! I think it’s more of an indifference to individual cases, they have so many, but we obviously see ourselves as special, and so we should. You are quite right to moan when you’re not happy, I always do. I asked to see my file the other day and i thought the surgeon was going to have a heart attack! He told me to request in writing, which I have, but in the meantime my GP has made me a copy. There’s nothing special in it but i consider that i have the right to read what is said about my case. I will get some dates tomorrow, let’s hope they’re ok. I’m lucky, only 20 mins easy drive to the clinic, and have made the choice not to work at the same time. Not sure if that’s the right decision as the schools go back tomorrow and i’m feeling pretty fed up that i won’t be there, but i just couldn’t get my head round the organisation that would require. If i sail throuugh the rads and my boob stops hurting i might, just might be able to get back on a horse, but i think i’m being optimistic there. It’s funny, 2 weeks ago my worst fear was chemo, now i’m worrying about rads, perhaps i should put all this into perspective. I’ve been very very lucky, but i still manage to find something to rant about - human nature i suppose. Anyway, have a peaceful sunday, love and positive thoughts to all, Gill
Gill
Is it a french thing? My hospital doctors have never handed any paperwork over concerning my diagnosis/treatment but my GP was quite happy to photocopy what he had been given -
Mary M
Consultants usually send a copy of any letters they send to the GP to the patient too. If this isn’t happening, just ask at your next appointment or phone your BCN. I’ve also asked for copies of path reports, CT/scan reports etc and there has never been a problem getting them.
Moya xx
Ermintrude, I really feel for you and hope you are feeling better today. It is such an emotional road to travel this breast cancer thing and sometimes the reality doesn’t seem to kick in for ages. Life for me was just going on normally before Christmas and then suddenly I’m in hosiptal having biopsies, waiting for results and then mastectomy and nodes, and January and Febraury are a blur of stuff and decions and yuckiness!!. I hope you can talk to people about how you feel. For me the best thing has been phoning the helpline on here. They are wonderful and really listen and understand. I’ve done that twice . MY husband has been amazing but sometimes we really need to off loaf with someone who can really emapthise. Both times phoning them has taken out that terror that can be so debilitating. Lots of hugs and support
Maggie May
Moya, for that you would have to have a BCN, here in France they haven’t been invented yet! Some big hospitals have them apparently but not where I am. Patient empowerment is not something the french have embraced yet, so when they get a bolshie one like me they don’t always appreciate it!
Hello All
I had my first rads on 1st March and am having 15 treatments. I have also started taking Letrozole and calcium tablets and will be taking both for 5 years. I have had lumpectomy, axillary clearance and chemo.
I have been told I can use E45 cream twice a day. I have also been told to drink 2 litres of water a day.
I also have a physio appointment booked in.
Good wishes to you all.
A xx
Hi and welcome. I’ve heard about drinking water, another question for my little book of questions for tomorrow! I’ve had a good weekend, my boob is a little bit better every day but i underestimated how long it would take. The problem is that at first you are so pumped up with painkillers etc that everything is numb, it took me a week before i could feel anything. Hope you are all fine and looking forward to next week, wherever you are on the journey,
Gill