November 2017 Radiotherapy

[anitajane]

Hi Pecan my aloe vera gel is by comfort zone and it’s organic leaf juice. If you would like me to get some for you let me know. It’s lovely x

[pecan]

Anitajane, I have checked and the diprobase is parrafin-based, which concerns me.  What brand is your aloe gel?  I do have aloes growing inthe greenhouse, but probably not enough to last me, and getting the gel is a bit cumbersome.

Actually, it bothers me to think of rubbing anything anywhere.  When I have had sunburn in the past I have had to use a spray, so having to apply a lotion seems counter-productive.  Especially when my hands are so rough.

[Merc46]

Hi everyone 

hope all are doing well I've had another session cancelled today but to be honest I was very pleased as my skin is suffering doctor gave me a cream to rub in four times a day and it's taking the burning down I bit.feeling very sorry for myself again and I'm being horrible to my husband (bless him) hopefully he knows I don't mean to be.x

[Gail1892]

Thanks Helena! And for all your support and encouragement, you’re a star 🙂

Good luck to everyone else still going through or about to start - there is an end to it!! Xx

[ladybowler]

Gail1892

Yay you have finished rads today so we are ringing the bells for you today.  Hope you have something nice planned to celebrate no more active treatment.

Take care of yourself over the next couple of weeks because you will still be feeling the effects of the rads.

Helena xxx

[anitajane]

Apparently E45 is recommended as well. I just prefer an organic option.

[anitajane]

Hi Pecan I’ve been using organic aloe vera gel. It’s lovely. As long as it’s water based is what o was advised at a presentation this week at the Marsden. I use is first thing and last thing. Very soothing. Xx

[pecan]

One thing that's really bothering me is this business of applying creams.  I habe now had two friends from another country tell me that they were told not to apply anything except cornflour, and most especially not to get the breast wet.  And yet in the UK we are told about moisturising all the time.  I have read so many bad reports from the UK people, and yet the two from outside the UK said they had no problems at all. 

I tried discussing it with the onc yesterday, but didn't get any real answer (or I have forgotten), and she has prescribed me Diprobase cream.  Surely the very act of applying a cream would be to apply friction?

[pecan]

I have my schedule at last.  Starting the 23rd November, ending 13 December.  They haven't mentioned boosts, so not sure if this means I don't need any.  I hardly stopped crying all through the consultation.  I have an innocuous-looking packet of pills to start taking when I have the courage.  (Letrozole)

And this has to be one of the lowest points of my life.

[ladybowler]

Gail

She was amazing, with me from the moment i was recalled through to my finishing active treatment, wonderful lady that I am very proud to call a friend as well.

Yay, I will be ringing the bells loudly on here for you on Tuesday evening mate xxx

[Gail1892]

Thanks Helena, will try upping the fluids to see if that helps and I’ll try Macmillan re the counselling. Your boss must think a lot of you to have arranged it for you 🙂

Ablondemoment - I’m also wondering if tamoxifen is partly to blame for my emotional instability!

Like you’ve all said, it is good to know we all feel similar and are not alone.

Roll on Tuesday

Xxx

[Ablondemoment]

It's so nice to see I'm not alone in feeling like I do. Think this forum is so helpful because you can ask questions from people going through the same thing. I've been taking my Tamoxifen for nearly a month now and think it may well be contributing to my emotional instability. Good luck with everything xx

[ladybowler]

Gail

You are so nearly there and then all the active treatment will be over.  The endless to and fro to the hospital takes it out of you as well. but after Tuesday you will not have to do it any more   Are you taking in enough fluids as that helps with fatigue.

I had my counselling done through work.  We have a confidential counselling service that my boss referred me to, they give six free sessions to an employee initially.  However, when I was first diagnosed by bcn told me that if I wanted counselling they could arrange it for me.  Might also be worth trying MacMillan or Maggies if you have a centre near you, I think they offer a services as well.

helena xxx

[Gail1892]

Hi ladies, I can also relate to ‘feeling like a fraud’. At the moment I’m finding it really hard to keep a lid on my emotions, feel like there’s a tidal wave in there waiting to explode and am not used to feeling so out of control.
I’ve only got 2 sessions left now and am really tired (actually feel like a zombie!).
At diagnosis I was probably fitter than at any time in my whole life - I ran the London marathon in April and am still struggling to get my head around it!

Helena, can I ask who arranged your counselling - was it via your GP or BCN?

Have a peaceful weekend everyone xxx

[ladybowler]

Ablondmoment

I am so glad to hear that you are feeling better today.

That is exactly why I had the counselling , compared to lots of other ladies I felt that I have had it very easy, which concerned me.  BUT, remember you have still had to go through the diagnosis, op, results, radiotherapy and potential hormone tablets for 5/10 years.  Not exactly a run of the mill "illness" and that is what my counsellor said to me as well

Have a lovely Saturday xxx

[momo4169]

Ablondemoment, I totally relate to what you said about feeling your cancer isn't serious and you feel like a fraud. I have felt exactly the same way and like you have been so positive. I went to a MacMillan coffee morning in September and thought this is for people who have proper cancer, not for me!

I could count on one hand the amount of times I've been emotional since my diagnosis but all that changed this week. I started my Tamoxifen over a week ago and rads start next week. I am now on an emotional rollercoaster and I hate it. I don't know if it's the meds or whether I've just had a massive emotional slump after months of being so positive. Like you, I'm coming to terms with the fact that this is serious, it's a big deal and I probably need to take things easy and look after myself better as I go through this.

Whilst it's terrible we're going through this and we feel like this, I do take comfort from the fact that I'm not alone in feeling how I do - it's normal and knowing that is a help in itself.

[Ablondemoment]

Thank you so much for your response. I have 15 sessions in total. Feel a lot better today. Think if I'm being honest I've felt like a bit of a fraud during this whole (cancer) experience. I've felt healthy and positive all the was through my surgery. Think because I didn't have to have chemo I haven't felt like it is too serious and it could have been so much worse. Yesterday sort of reaffirmed that it is serious, I did have cancer and I've been through quite a lot in a short time. Counselling sounds like something I should look into definitely. X x 

[ladybowler]

Ablondmoment

I would echo what hufflepuff is saying. 

It is not the most modest of positions to be in whilst having rads, I managed to get myself to think about something else whilst I was having them, usually what I had to do when I got home!! it helped to deal with the situation I was in.  The whirring of the machine takes a little getting used to but after a couple of sessions I was not even aware of it.

I must admit I had counselling just as I started and all the way through my rads as I felt scared that I was doing so well that I would crash and burn at some time, I hadnt cried, I think at that point I hadnt really totally taken in what had happened to me, partly because I did not have the time to because my partner is housebound so that takes up a lot of my time.  It was the best thing I ever did, it got me through, helped me come to terms with what had happened to me but also how our lives had changed, it was like a grieving process. Perhaps you might consider having some, it is a lovely safe environment with someone who is not emotionally attached to you, which I think is part of our problem we dont want to wory family and friends by telling them how we feel.

How many sessions are you having?

Sending you a hug

helena xxxx

[Hufflepuff]

Helena,

Thank you for your advice.  I' 'll stock up on E45 before I get started xxx

Ablondemoment,

It sounds as though your first rads session was pretty traumatic for you.  I don't start mine until 22nd, so really have no idea what it will be like.  I' m a nurse and much of my career has been working in intensive care so I appreciate how overwhelming big, scary machines can be, especially when we're not sure exactly what they do! Maybe speak to the team looking after you and they can explain things and reassure you. You have been through so much already and coped amazingly by the sound of it. It's usual I should think, to feel overwhelmed by it all at some point ( it hasn't hit me yet) so take it easy and accept the support from those around you. Sending you a hug and I hope your next session is a bit better xxx

[ladybowler]

pili pala

Gosh I have not heard of that, perhaps on Monday you could check with them why you have to wear a bra xx

[Ablondemoment]

Just got back from clatterbridge after my first lot of radiotherapy. Cannot believe how emotional I feel. Have been really upset for the past hour (can't stop crying). I wasn't expecting to feel so overwhelemed. The actual room itself (felt like something out of a syfi movie), the machinery (didn't realise there was so much of it) the feeling of vulnerability (arms in stirrups above your head while topless) - totally blew my confidence. I've been quite positive since being diagnosed with high grade DCIS back in Sept. Had most of my right breast and all my nipple removed and my left breast reduced, don't think I cried once through all of it. Today as thrown me completely and I'm questioning whether I have been coping or whether I've been suppressing my feelings. Did anyone else feel upset during their 1st session? I'm also feeling a little sensitive on my breast, not pain just feels different. Is this in my mind or should I be feeling anything so soon? Thanks everyone x

[pili pala]

Hi all, I had my second dose of radiotherapy today.  The whole thing took about an hour!  They kept measuring, marking and lining up, think they left the room about 3-4 times.  Each time I thought right this is it, but then they'd return and adjust things again.  I understand that they need to be careful and get things right and I'm grateful for their efforts.  Once it was finished though, and I was getting my stuff together to leave, the nurse apologised for taking so long but it is likely to be like that every session where I'm concerned.  She said this was because I had a bra on and they're not used to it.  I had no idea of this before I just assumed everyone wore one since they asked me to.  Do any of you ladies wear a bra during treatment?  Not sure why I have to?!

[ladybowler]

momo

Oh blimey that takes me back to this time last year.  I started taking it 3 weeks before rads, I felt very emotional, almost over sensitive and if someone said something nice to me that would make me cry.  That passed within a few weeks.

I did find that the constant travelling every day really got to me because my life was being controlled by this one apt every day, but it is a distant memory now.

Helena xxx

[momo4169]

Hi everyone, after a bit of advice. I start my rads next week and feeling quite chilled about it - only frustrated by the bind the daily trip to the hospital will be for four weeks. Throughout my two lots of surgery and all the emotional upheaval, I've actually been really good and could probably count on one hand the times I've been a bit emotional since diagnosis. But I started taking my Tamoxifen last week and over the last few days I've been feeling unusually emotional. I could cry at the drop of a hat and not on the usual stuff like M&S Xmas ads! Always cry at that type of thing anyway but more around things that wouldn't normally faze me like work and family stuff. Is this likely to be down to the Tamoxifen and my body adjusting to it?

[ladybowler]

hufflepuff

The first appointment will be the longest because they check measurements and will just go through everything that is involved in a rads session. 

Make sure you moisturise your breast twice a day, drink plenty of fluid a good 2 litres a day this helps with potential dehydrationand fatigue as a result of having rads, and get plenty of rest because the daily going to and from the hospital can be very tiring.

I will start a thread for December towards the end of this month.

Helena xxx

[pili pala]

Hi Helena

Thanks for the tips. I'm having 15 in total. I travelled there and back today, will do again tomorrow (took nearly 6 hours today!), but from Monday onwards they have booked me a room at their hostel. Hope this will help with the tiredness as well as travelling and missing meals really takes its toll already.

[ladybowler]

pili pala

Glad it went ok.

It wont be like that for the remainder of your sessions, they will generally be about 10/15 mins.

remember to moisturise at least twice a day, no less than 2 hours before the appointment.  I took my E45 with me and applied it when I was getting dressed again.  Drink plenty of fluid a good 2 litres a day to counter the potential dehydration effects from the rads and fatigue.

How many are you having?

Helena xx

[pili pala]

I had my first session today.  Wasn't sure what I was expecting to be honest but I didn't think I'd spend another half an hour been measured and marked.  Feel reliefed now that the first one is over, at least I have more of an idea what to expect from now on.

[Kimi]

Hi Ladies. Pecan, I was like you & terrified of the thought of radiation, but when I went for my assessment meeting, the nurse I talked to was so lovely. I had been told some horrible things before going & the nurse reassured me. I start on Monday & whilst like all of us I wish I wasn’t, after joining this group & talking with the nurse, I’m not so scared now. Could you talk to your BC nurses? I always find them very good when I’ve spoken to them. Good luck. Xx

[Hufflepuff]

Hello,

I hope you are all okay.  I went for my radiotherapy planning meeting today and will be starting on the 22nd Nov.  I'll join this thread and also the December one too. Any tips or advice would be good.  Best wishes everyone xx

[Merc46]

Hi pecan

this is a horrible thing that's happening to us I was like you think I was more worried about radiotherapy  than the diagnosed or surgery all I did the weekend before was cry cry and cry but honestly there's nothing to worrie bout it's so straight forward I'm into my week 2 now and I fill fine skin getting a little red a few sharp pains but manageable I think we are all entitled to have meltdowns. Big hugs to you X 

[Merc46]

Hi just wanted to wish you good luck for tomorrow all will be fine big hugs X 

[ladybowler]

Pecan

I know when I was diagnosed my breast care nurse told me that if I needed to see a counsellor that they could arrange it as part of what they do in the clinic.  I dont know if it is the same with your clinic.   Alternatively do you have a Maggies or MacMillan centre by you as I believe that they do as well,  There are also Breast Cancer Haven centres but again not sure if there is one by you but you can check on the internet to see if there is an the services they offer.

I am assuming that your rads team know about your skin problems and should be able to prescribe/advise on what to use whilst you are having your rads to help counter the effects of the rads.

Helena xxx

[pecan]

Sunbed!  Oh God, that makes it worse!

I have heard everyone say it's doable, I have heard "it's nothing".  There is no rational reason for my fear, other than a lifetime of skin problems from allergies to sunburn to psoriasis.  I just am terrified.  I shouldn't be here.  I don't even believe in it, I am only doing it because there is no alternative other than to say no, and every instinct I have says to say no.  I am depressed, and no matter how often I ask for some sort of therapy I am ignored.

[Headandheart]

I don't like what I'm reading here about people's Mirena coils being taken out: I am going to get very stroppy if they want to take my Mirena coil out. No. I'd rather take the risk, and be sure of contraception / no periods, based on what I've read. 

http://www.cancerresearchuk.org/about-cancer/coping/physically/mirena-coil-after-cancer

But noone's mentioned it yet - I will argue this one with the oncologist!

[Headandheart]

Pecan 

I wonder if 'radiation' sounds more scary than it is. Maybe think of it like a sunbed? 😉

[ladybowler]

Pecan

Honestly the rads themselves are very doable.  The first one will be longer because they check the measurements etc from the oncologist before they start the rads so it is generally about 20/25 minutes all in.  After that from undressing to dressing it is usually only 10/15 mins max

Helena xx

[pecan]

Yes.  The planning is on Monday, and a tour of the facility on Tuesday.

Every time I start talking about radiation I go into a meltdown.  It's worse than when I was first diagnosed.

[ladybowler]

Pecan

So is that your planning appointment?

H xx

[pecan]

13 weeks since my operation.  I have an appointment with the radiation department on Monday, but no word from the onc.  I am so depressed.

[anitajane]

Morning all, 3 treatments done and so far so good - skin just feels a little warm that's all. Have felt strangely emotional these past two nights not sure if it's my Nexplanon implant that came out in September or the Letrozole I have now been taking for a month but I have been quite tearful. Anyway, that's enough of me feeling sorry for myself, there's work to be done! Take care everyone Anita xx

[ladybowler]

Headandheart

Yay that is great, onwards and upwards now to the final part of your active treatment.

Helena xxx

[Headandheart]

I got a call today, appointment on Thursday. So relieved something is happening. 

[Gail1892]

Hi ladies
Anita, glad your first session went well 🙂

Merc, I also had the stabbing pains, they seem to have calmed down a bit now. Hope yours do too.

headandheart, I’d echo Helena’s advice about giving them a call - I waited a few weeks for my biopsy appointment and when I called to chase it up I was told I should have been there on that day, but I hadn’t received a letter or phone call

Xx

[ladybowler]

Headandheart

Have you tried calling them to see if there is a letter on its way to you xxx

[Headandheart]

I’m still waiting 

(frusttrating)

for an oncologist appointment. 

I thought it might be last week, or this week, but still no letter

meanwhile trying not to worry about my Mirena coil, the parking, tiredness, etc

i mainly want to know it’s going to be over by Chrustmas!

And today I went back to work after recovering from second surgery (and half term holiday) and it was lovely 🙂 Everyone is so kind, my students were genuinely pleased to see me. That’s why I hate not knowing how much more I’ll have to miss. 

[anitajane]

Hi All

So my first session is over today with 19 to go! Felt a bit emotional before I went in but it was all very straightforward and the staff at The Royal Marsden are lovely.

Roll on 1st December!

Hope everyone else all ok?

Anita xx

[ladybowler]

Tallulah

I think you have finished your rads today so well done and hope you have something really nice to celebrate it.

No more going to the hospital every day and you can start to get your life back

Ringing the bells for you tonight

Helena xxx

[ladybowler]

anitajane

Oh I wish they were, fraid they are virtual xx

[Merc46]

Hi everyone hope you all got on ok today unfortunately my session was cancelled is any one else having stabbing pains mine are very bad today to the point they are taking my breath away hugs to you all X