Good to hear you have finished Eastanglian, can't wait to get started on Monday, before I change my mind!
Chez, was interested to read you started your periods when you were 8. I was 9, and you are the first person I know who started so early. Always knew I was high risk for BC, no kids either.
Wishing everyone well with this treatment - I am hoping to continue working through the rads - has anyone else been OK to do so?
Just one rest day! Back to normal again tomorrow through to next Thursday (last treatment) yippee!
I may give the hormone tablets a try but at this time im very undecided.
Hope all going well with your treatment.
Evening all 🙂
Pandorra I'll be looking out for a post from you tomorrow to see where exactly you end up with your tattoos, probably on your knees at this rate So long as they don't keep you hanging around you should be fine as it isn't a horrible thing to go through, unlike the other stuff.
10/25 done today, nice and straightforward again and no hanging around so very happy with that.
Todays treat was a colouring book for adults (not the pornographic kind I hasten to add) and some colouring pencils .I spent a happy hour colouring in a pretty pattern (photo on my profile) before leaving to get zapped Very relaxing (and inexpensive) way to pass the time.
Hi lovely ladies, hope you have sailed through your rads today sharon. I imagine it to be like willy wonkas factory, and the munchkins are rushing here and there. And then of course, the machine oozes chocolate as our treat. Oh if! Well of for my planning tomorrow. They called me this afternoon to ask if all ok and remind me I get free parking. She seemed very nice, so fingers crossed all will be ok. Going into work for the afternoon shift, I am in a medical centre, and the girls are brilliant telling me not to stress if running late as they will cover. That's as long as I dont lose direction on the machine. Quite fancy the idea of my head going where my feet should go as mentioned by Sharon. Will report in. Lol xxxxxxx
Ha! We could demonstrate stress levels of each stage on the flowchart by correlating the amount of chocolate/cake/alcohol consumed. Waiting for diagnosis pre and post surgery is definitely a high scorer on that one
Woohoo Eastanglian, you're done at last! How are you doing now? I know you said you were a bit itchy and pinking up a bit halfway through, did that get any worse? A celebratory lunch sounds fab - eat lots of cake on our behalf!
I know what you mean about underplaying it, I did the same with my family and some of my friends because I didn't want them worrying about me (and, if I'm completely honest, I also didn't want them thinking I am some kind of wimp because we're all supposed to be 'brave' and stoical aren't we?!) A couple of good friends and you lovely ladies have been lifesavers in that respect because I can at least be totally honest and talk about all the various concerns and minor issues that worry me, but when family and most friends ask I just say it's all fine and will soon be over.
That sounds perfect!
Agree with you about the dewy skin, etc. Oddly i noticed recently my hand on the operated side looks much better than the other one. Could be because I've been protecting it a bit, but it's all soft and smooth! (Just realised that's another bit of me that's not symmetrical. Best not check the feet...!)
Thanks for cheering me up, you are a star!
Love, Rose xx
Ooh, I'm jealous of your rest day, how often do you get those? I think I have to do every week day (except Good Friday and Easter Monday) with just the weekends off and thought everybody did the same unless they had some sort of skin breakdown that needed to heal. Fingers crossed that all of us get through this without that happening.
The hormone question is a tricky one isn't it. I'm still planning to take the hormone once I've finished radiotherapy but won't hesitate to stop it if the side effects have too much impact on my quality of life. But you never know, we might be the lucky ones who don't get any side effects and I know that has happened for a few people who post on these boards.
Enjoy your rest day
Hi Rose 🙂
Glad to hear today went OK and I agree that all the radiology staff look like teenagers. Bit depressing really as I'm feeling every one of my fifty years and then some at the moment. Shame radiation doesn't miraculously cure wrinkles and give dewy youthful skin isn't
You are sounding so low about the Tamoxifen sickness, must be horrible so I admire you for being strong enough to stick it out even for 3 months. I hope it is just a temporary thing for you and eases off but in the meatime, I'll pootle off to my kitchen to make you some virtual ginger cordial and some virtual crystallised ginger cookies. I'll fax them over to you in about 30 mins so you have time to dose up before heading off for a good nights sleep.
Take care of yourself
Aww, so sorry Francine, the waiting is soul-destroying isn't it as no matter how much you try not to think about it, worst case scenarios keep popping into your head in the early hours of the morning only to vanish in a cloud of positive thinking the next morning before reappearing that night. I think the waiting makes us all go a little bit bonkers and it certainly did for me. I'm surprised you're having to wait so long to hear whether a second surgery is needed, has your surgeon gone on holiday or something? I thought it was normal to be told about this when they gave you the post-surgery pathology results.
About the hormone treatment, have you looked at the Predict! site yet which lets you put in the data about your tumour and tells you the 5 and 10 year survival rates with and without the hormone treatment? It also gives the same information for chemo. Like Lynne (Loubyloo), the improvement in survival rates for me is very small so my Consultant said it is up to me whether I want to take it or not.
I know Crouch End very well (it's full of lovely vintage clothes shops so a favourite shopping haunt for me :D) so maybe we'll bump into each other in one of the gorgeous coffee shops one day and can compare surgery/radiotherapy war stories!
Hope you start to feel a bit better soon but if not, keep coming on here as I'm always up for a good rant/whinge!
I'm hoping things will reach a crescendo then tail off. I'm almost 4 weeks in and it's getting worse rather than better. I've decided to give it 3 months before I make a decision, but can't really see myself sticking it out for 5 years. I've cleared the shelves in Waitrose of all ginger products as recommended on the other thread, cos getting rid of the sicky feeling is my main aim. The rest is tolerable.
Had my first zap, the girl in charge looked about 12 but seemed to know what she was doing! It's too soon to say, obviously, but this seems to be the easiest of the treatments so far. Hope not to have to eat my words in a couple of weeks...
Just wishing this was over, tired of it all now
Love, Rose xx
Another one bites yhe dust!! luckiky I have a rest day from radiotherapy and thats exactly what I intend to do! I have noticed that I am getting stiff on the treated side. Its feels very tight and I get a bit of pain through to my back, so im trying to remember to do more arm exercises.
Like Sharon im not sure about taking the hormone tablets, the benefit is 0.8% extra survival over a person who doesnt take them. Im going ti wait until the radiotherapy is over and have rethink then.
Love to you all xxxx lynne.
Rose you've got my sympathies with the Tamoxifen thing, I saw your other post and it all sounds hideous to me Are you going to stick with it for a while (possibly using a different brand) and see if the side effects sort themselves out?
I'm seeing some sort of doctor once the rads are over to discuss whether or not to take it as the benefits for me are so low that I'm just not sure it is worth it if it means putting up with the side effects that you've described. Of course I might not get any side effects so I'm going to try it just to see, but I can't say I'm looking forward to it
How is everyone doing? Rose I have started to get tired now although that might be because i wasn't sleeping very well but certainly nothing you could call fatigue yet. I had session 9/25 today and it was all straightforward again, although I did have a weekly review meeting with a BCN which I wasn't expecting (another one of those times when I heard 'oh, someone should have told you about that' and thought if I had a pound for everytime I heard it I'd be getting rich from this whole experience!). She was lovely though and I was very happy to talk to her and reassured to know I'll be able to talk to her even after the treatment finishes if I have any concerns.
Skin marginally pinker today and seroma at tumour site has swollen up again but nothing too worrying. As it is practically next door to the hospital I stopped off at the Wellcome Collection on the way home where they have an exhibition on Forensics, including a load of stuff about pathology. Totally fascinating in a gruesome kind of way and, weirdo that I am, it really cheered me up!
Right, off to slather on even more cream before tackling my exercises. Oh, I should have mentioned as well that I've noticed the arm on my treated side is stiffening up again. I'd got full movement back post-surgery so I'm keeping an eye on it to make sure it doesn't get any worse and will be disciplined about doing extra exercise. BCN said that if it doesn't resolve itself after increasing the exercise a bit she'll refer me to a doctor...who will tell me to do more exercise!
3 hours to go to my first zapping.
Not worried about that, just wish the Tamoxifen didn't make me feel pregnant and menopausal at the same time (nausea and hot flushes- not a great combination)!
Good to read that most people seem to get through without too much in the way of skin problems. Anyone suffering the fatigue I was warned about?
Love, Rose xx
Hi Eastanglian, I believe that the amount of radiation given (GY) in order to achieve the 6.6 GY for each of the 15 session treatment is to do with the volume of the breast. So with larger breasts they have to give more radiation to achieve the correct amount of radiation. I think that is at least one of the reasons that some have more problems with their skin. As well as that it also seems to differ according to whether you have recently had chemo.
As for me, I have size C cup and my skin is holding up well with just 3 of the 15 sessions to go. Bit pink and sensitive. I put on the Jeans cream (aloavera + vitamin e) all the time including the night before my next treatment. But in the morning I wash it off very carefully with very gentle soap and rinse with demineralised water. That as if there is any cream left the skin will be affected worse as the 'passing harmlessly through the first top layer of skin' of the rays is diminished by a layer of cream. As for the rinsing, my husband, a physicist, told me that the hard tap water here, containing calcium will act as a metal when it dries which would (slightly) increase the intensity of the rays.
I am relieved that I am almost through my lumpectomy, rt. Then have to pick up on the Tamixifen again which I stopped for the rt.
What is terribly worrying is that my eye pressure is way up, I take anti glaucoma drops to reduce it and they have stopped working. My ophthalmologist put me on different ones which burn my eyes. They are called Ganfort and in the UK they are available without preservatives but not in France. Am trying to persuade an online pharmacy in England to send them but I don't think it will work. I think it's all this stress that has been pushing up the pressure in my eyes, but my father went blind and I have all kinds of patholody (including extreme myopia) putting me at great risk.
As if that's not enough agony, my breast cancer was found during a scan for digestive probs. Had them since last June when I overindulged in non-pasteurised milk products. Ignored it at the time and developed haemorrhoids. Very painful and embarrassing, didn't want to see my gp for it.
Patronising gastro guy wanted to do a colonoscopy and I refused as the prep of drinking liters of liquid and throwing up beforehand would cause my eye pressure to go up badly. He ordered the scan where they found the breast tumor. So everything was put on hold. Now I am in pain from the haemorrhoids in spite of putting some cream on it and still have the (I think it's IBS) digestive troubles. Might of course be something worse.
Really feel too much is going on... Very hard to take, sleepless nights worrying........... I know I shouldn't complain, some/many of you ladies are going through mucn worse and being so terribly brave about it.
All my love to you all, xxxxx Margaret
I'm in North London too, near Alexandra Palace and although I'm an Essex girl originally (couldn't you guess from my name? ) I've been in London for 32 years so consider myself a proper Londoner. The V&A is my favourite spot in London, I'm a member which gives free entrance to the exhibitions and have been to all of their exhibitions for the last few years (almost died of excitement over the Hollywood costumes one - Vivien Leigh's frocks from Gone With The Wind; Judy Garland's outfit inc red shoes from The Wizard of Oz; Marilyn Monroe's famous white dress....oh, it was wonderful!) Went to the Alexander McQueen one on Saturday and loved it. I seem to end up there at least once a month even if only for coffee and a chat with a friend.
Not sure if it helps at all but they didn't get the required 2mm margins around all of my cancer, at one border it was just 1.5mm but they didn't say there was any need to reoperate (thank heavens because I'm not sure I could have faced it again after the fiasco of the first one).
Well treatment no 8 gone and dusted just 7 more to go!! Today I was collected by the nhs transport as usual but they came 3hrs before my treatment, we had to collect another lady who had her appt 45mins before mine. So I arrived and had to wait over a hour then had to wait nearly hour and half for transport home, finally got back at 6pm....absolutely shattering all this travelling and waiting around.
I also had a appointment at my local hospital with the gynaecological department (as they found a lump on my ovary shown on my ct scan) anyway the dr says he is almost 100% sure its just a cyst...phew! So on the 11th May I have to have it removed and both my ovaries too.
Like most of you, I have gone without the bra....quite liberating really lol. and no skin problems either, so that's a blessing. I only use the cream supplied by the hospital as I was told not to use the aloe vera until after the treatment has finished.
take care everyone xxx lynne xxx
Hi EastAnglian, lovely to hear from you but sorry you've got yet another step to go after the rads & hormones, must be mentally exhausting never mind the physical trauma of it all.
Have you had any reaction at all to the rads so far? Not even a bit of pinkness? If not you seem to be very lucky in that respect at least or have you found some miracle cream that you can tip us off about? I'm only on 8/25 and already have quite a reaction so dread to think what sort of state I'm going to be in when I'm through. But, as you so rightly say, even if I end up with my skin in a mess it is nothing compared to some of the poor people I see in the department everyday. There were two very young children in today who've obviously had chemo already - makes your heart ache for them doesn't it and heaven knows how difficult it must be for a parent to see their little ones like that.
I've booked to go to the theatre on Thursday to see Harvey and to the Opera the following week to see Madama Butterfly. Feeling the need for regular treats and I can't keep on eating this much food or I'll explode, which won't be good for the poor mangled boob
Hurrah for holidays, time to start thinking about where you want to go next 😄
I'm doing fine thanks, the radiotherapists are keeping a close eye on my skin so I know they'll refer me to someone if they think it needs to be checked. I did ask them about it today and they said it was just inflammation from the radiation and isn't uncommon and, since it doesn't hurt at all, I'm not worried. And you're right of course, stretch marks are the least of our worries!
Hi Cheryl, hope you've had a fantastic holiday? Bit of a downer to have to come back I imagine!
I'm glad your first session went well and the radiotherapy staff are really lovely aren't they, and having staff who seem to care about how you are feeling makes all the difference. I forgot to ask where you were being treated but assume it is somewhere in Herts?
I had 8/25 today and boob is well and truly baking now - swelling all over the shop and is now bigger than the untreated boob by quite some way. I wonder if we get stretchmarks from all the shrinking and swelling that they do in such a short space of time 😄
By the way, if anybody is in or around London and can get tickets, I highly recommend the Alexander McQueen exhibition at the V&A, it's marvellous. I wouldn't even consider wearing any of his clothes (and couldn't anyway as I'm only 5ft 1) but each creation was a work of art.