What a PITA Marian. I hope they get it fixed soon. Can you call them tomorrow before leaving home, to check it is fixed?
I had my first zap today. Well, actually it was 3 - one on each side of the breast and then one to my collarbone to get any problems wiuth lymph nodes up there. I didn’t realise that there were lymphnodes there. The lymph one is a bit tricky, as I have to hold my head at a pretty awkward angle to make sure that they don’t do my chin as well. They assured me that set-up for it would be quicker tomorrow as they know how to position me.
I am a little confused as to their policy on creams etc. At the planning meeting, I was given a tube of Aqueous to check and the BCN was supposed to call me re an Aloe Vera deodorant. Today I was advised to use nothing at all on the breast or armpit and to try to ensure that any showergel or shampoo washes off thoroughly in the shower. And only apply moisturiser if I start to react and with their say-so.
I have also been told to avoid wearing a bra as much as possible, but I find my silicone boob isn’t so comfy unsupported, even just sitting in a waiting room. So I have to decide which of 2 evils to put up with. Maybe I will go with alternate days.
Reading some of your posts, I am mighty glad that my local hospital is only 20 minutes or so drive away. Going every day at a longer distance must be pretty draining (or at least inconvenient).
AmysMum: I was told to avoid wearing a bra too - or if necessary, to use an old one that’s got a bit baggy. (Typical! Threw all the old saggy ones out just a couple months ago!)
I’ve invested in some cotton seamless support crop tops to try, as I can’t leave the house without any means of support (I’d trip up! )
A friend also suggested those bra extenders that you hook between the hooks and eyes of your bra. This would make the bra a bit looser, so hopefully it won’t chafe as much? I’ve ordered some dead cheap extenders from Ebay to see if it helps.
Someone on one of these forums also said that wearing a cotton vest UNDER a bra helps, so I may try that in combination with the extenders!
Weme - I don’t think I could handle getting up early enough for 9 o’clock appts just now, although I normally would get up at 5:30 for work.
JCJ - I’d take the chance on your holiday, you just might miss some of the scenery if you dose off but at least you don’t have to do the driving or walk too much.
Lemondrop - You’re brave planning all that driving. Can’t anyone else share it with you?
Teresa - I considered getting my GP to say on the prescription I couldn’t have any of the ones with lactose if I had problems with Wockhardt, but hopefully won’t need to bother now. How’s the swelling? Hope it turns out to be nothing significant and not lymphoedema.
Marian - That must have been so frustrating having a wasted trip. When do you go back again?
Caroline - Sorry to hear you’ve been delayed. Hope the wound heals soon so you can get on with things.
Amysmum - Might be worth getting some vests with supports in them. Not sure if they’re any good but saw some cheap ones in Primark and have thought about getting them.
I have used a M & S vest top which was OK. To travel to rads I used a halter neck bikini top which was easy to take on and off and flexible so it didn’t rub.
I have some oldish vests with support (and am wearing one now), but since my reconstruct, I have been wearing either a light-support bra + vest or medium support bra. The medium ones aren’t cotton, so are out of the question for now.
I’ll see how I go with just the vest top - must make sure I am not late for the school-run on Thursday and Friday as breaking into anything other than a sedate walk will be uncomfy.
All of my older bra’s are underwired, and I certainly am not ready to go with one of those. Maybe this is why some hospitals don’t do immediate rebuilds.
Gail, if getting up early doesn’t appeal, try going for appts late morning, the early birds will be coming out of their spaces and you shoudl be before afternoon visiting time (a parking-nightmare at our hospital).
JCJ, I agree, go for the holiday. I managed to squeeze in a holiday between chemo and rad’s (by doing rads a bit later than normal) and definitely enjoyed it.
Hi All
I have calmed down now. They just don’t seem to realise how you build up to this and how let down you feel when it goes wrong. They are hopeful that tomorrow will be fine so fingers crossed. Anyway it’s more detail for the play I am writing - which started off as therapy but is rapidly turning into a very good staff development piece. My working title is “Blue Tit - a bird in your hands”
The radiographer today also told me that their Royal College has withdrawn all advice re creams as they don’t have evidence for any! I am going to go with washing with aqueous cream and using aloe Vera if I feel I need to cool my skin I think. I also bought a couple of sloggi crop bras and they are sooooooo comfy - just hope they don’t get ruined. Tonight I am going to relax have a glass of wine and toast us all for smoother times and good health. Big hugs all. Marian x
Marian I totally love your working title - very clever!
Gail I fear it is probably mild lymphoedema, sadly which is annoying in the extreme. I cried om Friday evening when I found it Really wasn’t expecting it as I am not a large lady, and am relatively fit, thought I would be OK.
Vests - the Primark ones are great and at £2.50 each I bought about 10 - 2 in each colour. Comfy and as they have the support you can pop your softie in there when you want to pop out.
Number 4 session and hopefully some answers from the physio about my arm tomorrow!
Blue tit - I love it! My neighbour brought round a get well card for us both just after I came out of hosp. It had 2 blue tits on the front. OH nearly had a choking fit trying not to laugh. At the time I wasn’t in the mood to see the funny side - and poor neighbour just thought we’d like it as we enjoy the birds on the feeders in our garden! Makes me chuckle every time I look at it now.
Good Luck Teresa, I hope your arm problem easily sorted.
Gail5 No I am stuck with the driving but I have told the others we take a few breaks on the way! I seem to be okay at the moment though, I keep waiting for the Arimidex side effects and the rads ones. I seem to be getting off lightly at the moment so I keep waiting for the rude awakening. I did a 140 mile trip Saturday and hope to again this Saturday too. Hope everyone has had a good day. xxPam.
Morning All
Just back from first session - a bit odd with 2 blokes and chilli peppers on the sound system. All went well until 3rd bit when the computer detected a problem and cut out. Apparently whoever did the programming hadnt put in the safety margins had made a mistake. They had to reprogrammed and this took time and I was still lying on the bed keeping still - for 45 mins. Head of department came to see me to apologise and said they would have to fill in an incidence form. Hope they get it right tomorrow - starting to loose confidence. Have a good day all. Marian x
Aaww Marian,
If your Rads position is half as (un)comfy as mine, that must have been such joy. Hopefully the computer know all about you now and tomorrow will go smoothly. I had my second session today and it was far quicker setting me up this time - it helped that I knew just wear to put my chin while they zapped my collar-bone. I didn’t even have time to lose all feeling in my fingers
I actually met another BC patient today in the waiting room. I had met her before - browsing the non-wired bra’s in Asda the week before we both had our op’s so back in late September/early October. We got chatting then as it seemed unlikely she would be in such a glamorous department unless medical requirements had driven her there. It was nice to catch up. She started Rads yesterday too, so we will probably bump into each other lots in the waiting room over the next 5 weeks.
Hope everyone else is having hassle-free appointments.
Sue
Poor Marian - by the law of averages, you should have trouble free sessions from now on.
Thanks for all snippets about bras/tops etc - the hospital gave me a front-opening cotton bra and softie before I was discharged, and it’s not too bad, even with the seroma, which does not seem to be shifting. Good news is that I still seem to have a hint of cleavage when I wear it, hope it’s not wholly dependent on the seroma! But sloggi options sound good, will follow up. Have noticed that there is a Nicola Jane only a mile away from us - never noticed it before of course, not on my radar - so I may pop in and check it out, at least get some advice.
Prep session yesterday went well, although I found 2 of the 3 tattoos quite painful, though obviously they didn’t last long; but one had to be done again because it was too small, so I got the “sharp scratch” (they lied) on that one twice. The third one was round the side, an area where obviously I am still numb from the Mx. But the radiographers were all just lovely - all colours of the rainbow, all young and attractive women, and with great patient manner; training must be good. Also got list of appointments for 1st week of treatment, beginning on 30th; the list doubles as car parking pass, so that also was trouble free.
Ref creams, the advice was aqueous cream, but make sure it’s well absorbed before treatment or it will fry the skin. Makes sense.
Now 2 weeks before zapping begins - must try to get some jobs done during that time, and tiredness begins to strike again (actually, I was pretty whacked when I came back yesterday, went food shopping on way back). I am looking forward so much to getting back to normal levels of energy and stamina…
Marian So sorry to hear about your experience yesterday hope it all goes smoothly now. My radiographers have all been female so far and very pleasant and friendly. Not sure I would be that comfortable with two male ones. Trouble is if you ask for females it would probably delay things and there are enough waits already! Good luck for the rest of your sessions. Hope everyone has a good week. I am off for my next prescription in a bit so I am ready for a bit of confrontation if they try to put me on the generic one this time, hope I they don’t try though. xx Pam.
Marian, I hope you have a better experience at rads appointments from now on, it must be so frustrating to have appointment cancelled and then further problems with equipment!
Is anyone else having nausea immediately after treatment? I’ve had six now and straight after the last two have felt queazy.
Morning all.
Session this morning went like clockwork - more like this please. I am now questioning my request for 8am slots as a bit ambitious as getting a bit tired with 6am starts. Re: feeling queezy - I felt a bit sick yesterday but put it down to being so wound up and tense beforehand - seem ok today.
Big hugs Marian xx
At last Marian! Glad it went smoothly. Not surprised you are getting cold feet about 6am starts - Obviously the best thing is to have a little nap at some point after you get back! No shame in that (I do it every day… shhhh!)
Good morning everyone, hope you all have good treatment days today. My appt is not until 6.50pm because some of the machines are being serviced. I am taking the opportunity to have lunch with friends instead of being at the Q.E.! I am also waiting to hear from P.C.T. tonight whether they will fund Arimidex not the generic. My, not very nice encounter with a G.P. on Tuesday, suggests this is doubtful He said I haven’t tried generic yet to see if I would get side-effects from them and I said no and I don’t want to take the chance thanks I have enough going on at present. I also said I knew the letter from the Onc. had said Arimidex not just Anastrazole. I just have to keep my fingers crossed until I hear.Marian I so do not envy you aving such early starts. Jube sorry to hear the rad sessions are making you queazy, I hope it settles down soon.xx Pam
Just read my post I normally sound my aitches so please read having for aving! My typing is a bit slow but obviously my brain must be even slower! Sorry about that.Pam
I have an appointment with my GP today to broach the subject of repeat prescriptions of Arimidex. Not sure what response I will get but I can imagine what the answer will be. 3rd today and again went smoothly. Good luck all and let me know what your PCT says. Marianx
Hi ladeez, I’m two and a half weeks post-rads and just wanted to say hi and send some coping vibes - though it seems like you’re all doing really well.
Marian, the first day of my treatment (ie, after they’d taken all the measurements) I walked into the room and the nurse said ‘Oh, sorry, wrong person! I thought you were breast cancer, but of course you’re womb cancer’, and started to guide me to another machine. Then she stopped - ‘Oh no, you are breast cancer, aren’t you? Are you? What are you? Ha-ha-ha!’
I just gaped at her, wondering if she was on something! Then I sat down and got all three technicians to check EVERYTHING to make sure they weren’t going to zap the wrong bit of my body… jeez.
Anyway, my confidence in them all was quickly restored - and in 30 sessions I never saw that particular technician again, phew.