I’m pissed off. Again 
I start radiation on Thursday. Rang the hospital today. They won’t let me use Mepitel film during radiation. They said I can put it on myself afterwards. Then remove it before the next treatment. I’m going to fry 
I’m so angry that they won’t let me be proactive and manage the side effects and STOP MORE PAIN
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It sounds very frustrating, I wouldn’t mind but at another hospital they would probably be fine with it. We should all get the same choices no matter where we are being treated. I really hope it isn’t too harsh on you xx
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I’m actually feeling fine now the infection is under control, not too much discomfort from the operation and new wounds. I have been told that I need to wait three or four months for a replacement, I’m hoping to get a date in the diary when I see the surgeon next week. Xx
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I’m not sure if it helps, but today has been day 9 of 10 days of radiotherapy and so far I’ve not had any side-effects at all. My skin’s not even reddened and I’m one who burns normally if I just look at the sun. This is after 7 cycles of chemo and then surgery (admittedly only lumpectomy), so my skin, like the rest of my body is far from tip top right now.
I know it’s maddening not to be able to do what you want, but it might just be ok. I really pray and hope for you it is.
Sue xx
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@NikiR so sorry you’ve had the added trauma of an infection and more surgery. You sound to be being amazingly strong and matter of fact about it. I truly admire that. Take care and be kind to yourself. X
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Thanks Sue, that sounds positive, glad things are going okay xx
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Hi @Hawketower, how did the radiotherapy go? I really hope it’s being kind and you are not having any reactions. Xx
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NikiR I’m surprised to read they are not keeping eye on you, do ring and get referred by your doc if they are going to be like that with you, he’ll refer you and you’ll get mri and mammo standard. Or you can have a mammo at a Nuffield and they give you results same day, no waiting, costs about £280 I think. Just wanted to share 
Shi xx
Hawketower they do keep close eye on your skin and they will give you medi honey if they think you need it. Keep slapping the cream on after take one out with you in handbag for when you are out and about and anytime you feel the heat starting go and slap more cream on. Also keep on in fridge at home too, that’s lovely and cooling from there. I burn even if using factor 50 so I was worried when facing rads, but everything was fine, I had to keep slapping cream on for about 6 weeks after finishing rads as the heat calmed down. Keep drinking lots of water during rads too, I found that helped a lot with combatting the fatigue hope this helps Shi xx
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Thank you. I was also thinking of looking into private CT scans, my breast cancer was triple negative sarcomatoid carcinoma so
is more likely to spread to elsewhere in the body so I’m not as worried about a local reoccurrence.
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Hi @Shi @NikiR I’m ok thanks. Super tired and nauseous, but I think that’s probably from the Kadcyla as that’s how I felt after the first round. Skin is ok so far after 2 rounds of rads, back to it tomorrow. Having my 3rd acupuncture session tomorrow, he sticks needles in my feet and along my shins up to my knees. I’m still getting peripheral neuropathy in my feet but it hasn’t worsened, and I think possibly a smaller section of my feet is being affected. I’m also using a TENS machine a few times a week roughly where the acupuncture goes. Hope everyone is feeling ok x
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How is everyone getting on? 
I finished radiotherapy yesterday, starting Tamoxifen today, and having my 3rd TDM1 this afternoon.
Xx
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Hi @Hawketower,
Well done! How did it go? I hope you’re feeling well and the Tamoxifen is kind to you.
I’m doing okay, slowly recovering from my infection, it really seems to have knocked me back but all healing well so fingers crossed I will be able to have a new implant at the end of May.
I did email my oncologist about being discharged in a year, the cancer nurse called me the next day to reassure me that I would be monitored for five years and asked who had told me I would be discharged, I told her it was the doctor at the breast clinic and it was confirmed in her letter. She seems very shocked that I had been told that.
Take care x
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Hi @NikiR
Good to hear you’re recovering and hopeful of an implant date in May. I got through a 5 year schedule yesterday for annual mammograms, have you had anything like that?
I’m ok thanks, been pretty rough the last few days with vomiting and diarrhoea. Can’t tell if that’s from the increased chemo though or a combination of radiotherapy SEs still. Joyous innit what we go through!
Fingers crossed the healing continues and the pace picks up so you can get another noob xx
Hi everyone, sorry I haven’t kept up with the posts, for some reason I stopped getting notifications so I didn’t think anyone had written anything.
Hope everyone is doing ok, although I can see there has been some ups and downs.
Had my first yearly mammogram yesterday, appt for results isn’t until 29th May!! Unless there is a problem of course, then I would get a call back, so no news will be good news.
Hope everyone is doing well
X
Emma
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Hi All,
I have stopped getting notifications too, only found these posts because I was laying awake scrolling through.
@emsj wishing you luck with your mammogram results, I can’t believe you’re at your first yearly check up stage already. It was the first anniversary of my diagnosis this week, I can’t believe that’s been a year either.
@Hawketower I hope your treatment is going well and you’re not suffering too much. I really do feel for you, still going through more chemo, do you have many more to go?
Your five year plan sounds good, a bit of peace of mind, knowing what is happening when. I have nothing like that, only an appointment for next February, a year after my last appointment with the breast team.
I have seen a neurologist about my neuropathy, he says it is permanent and all they can do is manage the pain. This news really made me feel down, with everything else there has been a plan to make it better. The pain management is going so well, hence being on here at 4am.
On a more positive note, my hair is growing back well, I have a head full of crazy curls. 
Best wishes to you all. x
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I’ve just given myself an enema. The hospital aren’t interested unless I’ve got a temperature when I ring them, they put me on 3 laxatives simultaneously. . So constipation since Thursday caused by anti nausea meds means nothing to them other than pump more pills in. I’m so over all of this. I’ve got 9 more chemos to go. October it ends. I hate this year. Sorry x
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Oh my goodness, I’m so sorry the hear you are still suffering so much. I know there is nothing I can do to help but please feel free to have a rant on here, sometimes it’s the only thing you can do to get it off your chest a little bit. Wishing you well xx
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Thanks @NikiR 
I’m ok now, ended up in hospital for a couple of nights but it got sorted eventually. I’m visiting family now in Ireland for the first time since July, so that’s been lovely. Hope things are ok with you? Xx
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Hi @Hawketower, so pleased to hear you’re doing okay and I hope you’re enjoying your trip it’s well deserved
I got some results back from my neuropathy tests and it turns out that part of the problem is carpal tunnel which can be fixed with an operation so fingers crossed I won’t have to live with the pain and cold for too much longer. I did ask my GP if it was carpal tunnel when I first started getting the pain but she said it wasn’t. I’m still waiting for an appointment for my replacement implant but the surgery has given it the go ahead so hopefully not too much longer 
@emsj I hope you’re doing well.
Best wishes x
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