Hello lovely March (and perhaps a few April?) radiotherapers…
So first session (1/25) done today and as expected, it was all a bit of an anticlimax as I haven’t started to glow in the dark neither have I been granted a superpower. Although maybe that comes later? I’m hoping to avoid turning into The Hulk or the Invisible Man but wouldn’t say no to mind-reading or time-travel as a superpower. Although come to think of it, invisibility would be cool too 
Session took about 15 mins in total, most of it lining me up on the board, but had to wait an hour and forty minutes to get started as machine had broken. Think I might be saying that a lot over the next month or so 
I was also surprised to learn that they only give appointment times a week in advance and some of them are distinctly odd (have a 6.30pm on Friday) but I guess it doesn’t really matter since I’m not planning on doing much else for the foreseeable future.
Looking forward to hearing about your sessions too
xx
Sharon
Well done, Sharon- no 1 under your belt. Keep us informed how you go- no need to say that, really, is there? I know you will. We’re relying on you! I see you have 25 sessions, I only have 15 so we’ll probably finish at around the same time.
By the way, when I went for my planning meeting, i was given a schedule of all my appts from start to finish. I One area where my hospital scores for efficiency? (Makes a change…)
Love, Rose xx
Hi special ladies, well done sharon busy diary! Met with my onc. Today and she is great. Didn’t have to ask those worrying questions as she just covered everything. So, next step will get appt. For rads planning, 5 days a week for 3 weeks and I start Anastrozole tomorrow. Was given a tour of the oncology department, area where rads takes place and free parking! It has helped talking with her in depth. Told to only use Simple shower gel and only E45 lotion. Read up on the side effects of Anastrozole and hope it likes my system! Anyway, great we have our thread, thank you Sharon, Easy on the lotion. Lol xxxxxxx
Ah, your radiotherapy depts are obviously a lot more organised than mine. If you count the planning session I’ve been to mine twice and both times they’ve been 90+ minutes late so that doesn’t bode well for the future. Still, if ever there was a time to read those old classic novels I’ve been meaning to get to for years, I guess this is it
Glad you’re all sorted now Pandorra. Did your Oncologist explain why she chose that particular drug for you? I don’t know anything about that one so I hope the side effects aren’t too grim. After Rose told me about the beard we can expect when taking Tamoxifen I’ve given up reading about the side effects or I’ll talk myself out of even trying it (don’t really understand how a drug can make the hair on my head fall out at the same time as causing hair to grow on my face but I suppose it’s something to do with increase of male hormone at the same time as a decrease in female hormone. Sigh. Not easy this cancer malarkey is it!)
xx
Sharon
Hi sharon, anastrozole is a cousin of letrozole and the side effects appear to be less than tamoxifen, who knows when we start it. Because I was negative and hadn’t gone in lymph nodes, blood vessels etc, they say this is the best onevfor me. Also, I had a grade 3 and a blessing it hadn’t gone elsewhere. So tonight pop the pill, have told everyone in work to be prepared tomorrow who knows what we will be like! Waiting for planning appt I am in essex, it’s the only way, and have heard from others that seems to go well. However, I think we all know we have to go with the flow. As you have experienced machine breakdown it’s not unusual is it. Hope all good today. Love to all xxxxxx
Evening all
Second zapping today went well as I turned up half an hour early and got straight in so I was done and out before my appointment time. The radiotherapy staff were lovely too so it’s all good. Still no sign of any interesting side effects though *taps foot impatiently*
I read a little bit about the drug they’re giving you Pandorra and although the side effects look scary when they’re all written in a long list, I don’t think they look much different to any of the other drugs so hopefully you’ll not get too many, if any, problems and someone on the forum is bound to have found a solution even if you do need some help.
Rose I’ve put a little pocket mirror in my handbag so I can examine my chin reguarly for any signs of rogue hairs. Not quite sure what I’ll do if/when I find any mind as I don’t own any tweezers…p’raps I could plait them and make it a style statement?
xx
Sharon
Evening all
OK so 4/25 done now and still no reaction of any kind other than boredom from hanging around waiting on malfunctioning machinery. Not even a hint of crispy red skin and no change in sensation at all. Nada. It’s a good thing I’ve got an Amazing Shape Changing Boob to entertain me each day or I’d be bored witless by now. Boob is like one of those lava lamps as it gently undulates from one shape to the next, quite fascinating actually, but it’s been doing that since the surgery and I don’t think the radiation is making any difference :womansurprised:
Anybody else starting soon?
xx
Sharon
Hi Rose
The quick answer is that I haven’t a clue! My brother-in-law is a radiologist/radiographer of sorts (never know what they are actually called) and he says that ‘low and slow’ is the tried and tested way and although the shorter, high dose sessions are supposed to be just as effective, they haven’t been used for as long so are not as well tested. I asked for low and slow on that basis but without a boost treatment.
You still doing OK?
xx
Sharon
Ooh, Paul Simon, lucky you I’d love to see him!
I’m sorry your poor boob is still playing up, are you going to raise it with the BCN? I would if I were you as that’s what they are there for. I’ve definitely got some sensitivity around my treated boob, it feels very tender & lumpy and the nipple is sore so I’m still wearing a bra night and day to keep the movement minimal. For the last week or so I’ve been able to see the ‘wedge’ they removed from my boob (depending on how well the lava lamp is performing!) but I’m assuming that’s just normal as I’ve stopped wearing the surgical compression bras and moved on to soft cotton sports bra type things which are much less supportive so I guess gravity is doing it’s thing.
I think I get Good Friday and Easter Monday off so due to finish on 16th April. We’ll be able to compare red patches 
I’m getting out and about a bit too but nothing as glam as Paul Simon. Jealous? Me? Nooooooo!
xx
Sharon
Morning all
It was day 5/25 yesterday and I’ve FINALLY got a little reaction - underneath my skin is itching a little bit (odd feeling as it’s not the skin surface but underneath that) and inside of boob is noticeably more tender. Bit relieved as I was beginning to wonder if they’d left the machine unplugged at the wall or something and I’d have to do it all again! :womanlol:
I’m off out with a friend to a Foundling Museum this morning before going to get zapped this afternoon and if they get me in and out in a reasonable time, we’ll go on to the British Museum afterwards. Love a day out (and an excuse for more coffee/cake)
Love the half deflated balloons idea Rose - ha ha ha! They’ll need to be red or bright pink to reflect the reason we are celebrating but that is going to be some party isn’t it! I’ll probably be in a state of woe again though shortly afterwards as I get to grips with Tamoxifen. Are you noticing any side effects from that yet (glad to hear you haven’t developed a beard yet of course!)
xx
Sharon
Hi lovely marching ladies, hope the skin isn’t too bad, but I would have been like you Sharon and wondering if the machine was really working. Got my rads treatment planning appointment for Thursday 26th, can anyone fill me in on what happens, didn’t take it all in when I met with my oncologist. Tatoo marks ring a bell! l love the itinerary sharon, enjoy and eat cake! Let us know how skin doing. Lol xxxxxxx
Hi ladies,
The planning session was straightforward, very quick and has no side effects at all other than the tiny little tattoos. I had to strip off my top half and stretch out on the CT scanning bed (I was on a sloping board). I had a rest under my knees/shin bones plus arm rests to raise both arms above my head and then I basically stayed like that for about 10 mins while they drew on me with a felt tip and read out a load of numbers to each other. It was a bit like a weather forecast really where the radiologists said things like “left 95.8 and 11 up, good coverage” and plotted where to shoot the rays. Once they were happy they’d got the position right they made three tiny little tattoos which were basically just drops of ink on the skin followed by a tiny little scratch so that some of the ink went under the skin. Two are on the sides of my body and the other in my cleavage and they are barely noticeable, smaller than most freckles.
It wasn’t in the least bit painful and was over in minutes so nothing at all to worry about. The only potential hiccup is delays in getting in to the planning session as it seems that at least one of the machines is down pretty much every time I go which creates a backlog on the other machines so take a good book or something to entertain yourself
Hope your sessions go smoothly and keep slathering on that cream!
xx
Sharon
Hi All I’ve got my planning meeting Monday 23 March at 2pm. I was supposed to be returning to work that day. Hubby wants to attend the appointment with me pm so I will ask my manager if I can work from home that morning and return to the office on Tuesday.
Hi ladies, looks like will be an eventful week for us. Thanks Sharon for the run up, and thanks again for this invaluable thread you started. It feels like we all belong. Hope the skin is ok, have you tried e45, apparently it’s the only one they like to be used where I go. Anyway, well done and lol xxxxxx
Evening all,
Oh dear, should have been session 7/25 today but I had a meltdown on the Linac and didn’t go through with it My normal machine had broken down so I was moved to a different one and it was a thoroughly unpleasant experience being hauled around by the radiology staff. Normally they are polite and very careful and considerate but today’s lot left me feeling totally dehumanised as they pushed and shoved me around while talking over me for about 10-15 mins then went off for a little group whisper at the end of the scanner bed and then told me to get off so they could start again. They didn’t bother to lower the bed so I had to leap off it as my legs didn’t reach the floor, bare boobs bouncing uncomfortably as I hit the lino. By then I was crying so I just dressed and left, don’t think I can carry on with this it’s just too miserable
Sorry for such a low post but that’s how I feel today.
xx
Sharon
Oh sharon, how dare they treat you like this! I have heard this before, a friend had similar, just once, but still not acceptable. Problem is when you start to feel a bit down we lose our guard. So, on behalf of all us ladies, we are sending you strength, oodles of hugs, millions of kisses and tomorrow will be normal. Also, tell them to wise up!! Right I feel better now. Take care special lady lol xxxxxxxx
Hi Sharon How awful for you. Why didn’t one of the staff come after you? As Rosemarie says you can get through this, you are strong. Go back tomorrow & complain about the the behaviour of the staff, otherwise they will continue to treat vulnerable patients in that way. Go girl, you have the strength Hugs sent your way xxxx
Thanks ladies, I’ll see how I feel tomorrow. The fact that I am hormonal and therefore my usual weepy mess at the moment and had a cold sore erupt yesterday isn’t helping at all. It’s only the fourth cold sore I’ve ever had and the others have been at times of serious stress so I’m obviously more stressed and/or rundown than I had realised but even leaving that aside today was horrible. Can’t help wishing that some of them had to go through this themselves so they were a bit more aware of how their words and actions can make us feel
xx
Sharon
Hi ladies,
Well, I did go back today for my appointment and to their credit they were brilliant. One of the more junior staff members who I’ve met twice before took me aside and asked me what had happened and then went and got a superviser to talk to me too when she heard what I had to say. Both of them handled it immaculately and I’ve been reassured to know that they will speak to the people who dealt with me yesterday and I’ve asked them not to make it a ticking off but a gentle reminder that they need to be more considerate with patients in future. They’ve also said that I can have all my future treatments on the machine I normally have and with at least one staff member that I’ve met before so that those sort of problems don’t happen again.
The treatment today went perfectly and was all over in minutes - totally different to yesterday’s treatment. Hugely relieved but feel a bit ‘prima donna-ish’ as I hate having to complain especially to people who are trying to help me.
As always, thanks for your wise advice and sorry for being such a diva
xx
Sharon
Thanks Rose, as you can see when I said I get a bit Diva-ish when the monthly hormones kick in, I really meant it! Heaven knows how bad it is going to get once I start the Tamoxifen - I expect the govt will start offering safe-shelter to everyone who knows me and will ask the doctors to bring on my menopause immediately! :smileytongue:
xx
Sharon