Starting rads in April 2012

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Sorry to hear of continued problems with healing, Caroline - you were concerned this might happen when we met at Roundhay (Margaret). Hope that you still make your holiday schedule though - it’s so important for us all to have something definite to look forward to. The only good advice re healing I know, is to eat lots of veg and fruit, but also protein. I am still a bit concerned that my seroma is still there, but they said it was OK at my planning session.

Tired 1, I only had 2 x tax before they stopped it because the tumour didn’t shrink, and then went straight to Mx. Last chemo was 24 February and so far skin and nails on feet OK, although I have mild neuropathy. I have slathered the soles of my feet and my toenails with aqueous cream every day since before the first treatment, and always worn cotton socks which allow the cream to soak in.

I am also at Jimmy’s. 1st rad on Monday next - aim to use aqueous cream for chest too - they seem to approve it but said not to leave any on skin surface before treatment to prevent frying - makes sense.

Marian, you seem to have been sooo unlucky, do hope things go better in future. Very stressful and frustrating for you.

Gail, T - will try to get the most out of LGFB session - eyebrows lost 8 weeks after last tax! And seem very slow to return …

Interesting about weekly reviews, these have not been mentioned to me, but will ask when I go for my first treatment on Monday. I intend to ask for bone scan since I am post menopausal and I am concerned about the impact of steroids (from chemo) on bone health. Am trying to take plenty of exercise, but this dreadful weather has been preventing the walks I would like to take and the exercise bike does get a bit boring (and isn’t weight-bearing).

Good luck to those of you trying to get the medication you want - it does seem that you have to be assertive …

Weme, hope you soon feel better, it’s hard when you get so tired, especially if your skin is sore and you have been at work, that’s impressive. Cats do get what they want, don’t they? Hope meeting with onc goes well.

Pam, nearly there, wow, and good skin condition too. Hope bone density scan is reassuring.

Hugs and happy travelling/zapping to all, Mujum

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Zap 4 done. Had time for a birthday pub lunch on the way and still got there early. Went in early. Not so tired today. It was weird how it just hit me yesterday! Had to give in and go to bed for an hour at 8pm!

One of my radiologists asked if I was using the aqueous cream and when I said I was, but I had washed it off before coming she said “No, you can leave it on, it’ll help stop your skin drying out!”

I wish these professionals had all done the same training! Or maybe it is because the machines are different?

Took my bra off when I got home as it felt tight (even with the elastic extender!) and now realise I can’t have another cup or tea without going to the shop for milk! :frowning: Not brave enough to go out without it!

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Hi everyone.
Caroline, have you thought about booking the holiday and if your rads get delayed again, just having them when you get back. I think I would have started mine in March, but we were going away for a week over Easter, so my Onc was quite happy for me to have the holiday and then start rads immediately I came back. We discussed this with him way back in October (before my chemo started).
Carrie, I didn’t know I was having fortnightly reviews until my first rads session when I was given all my appointments. My Onc appts are 15 minutes after my rads ones on a couple of Mondays. I am not too worried about the Rads running late, as my onc always does too.
JCJ (sorry, can’t remember your name), Happy birthday.
Talking about training, I have had trainees at 2 appts this week. The first was quite good - I only really knew she was a trainee cos I had 3 in the room, including the senior one. With today’s, I think it was her first time with a real, live patient. She was so apologetic when she had to draw some dots on me (and one of the others told her I wouldn’t bite). She must have asked some questions during my 3rd zap, as when they came back in, there was a bit of chat about how they make sure they don’t do any bits twice and also how they avoid my spinal cord. It was quite interesting. I don’t like to ask while they are lining me up, as I worry about breaking their concentration.
Well, 10 out of 25 done, so just counting down to the half-way point.
I hope everyone has a good weekend, with a break from trying to park at hospitals.

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Hello everyone,

I hope you all had pleasant weather today, yesterday’s weather here in Leeds was dreadful, rain, rain and more rain, but today has been much brighter.

Caroline, I’m sorry to hear your rads are being postponed, it must be very frustrating for you. Do continue to pop by here and keep us informed. I wish you well and hope your rads do start on May 17th, May 17th is the date of my final radiotherapy session.

Lemondrop, you’re nearly finished, fantastic! I too am using Simple products, they were approved by my hospital team.

Gail, I’ve learned a little more about the trial I’m taking part in, the blood samples are being lab tested for immunities, apparently chemo affects the balance of immunities and the trial is to monitor how it changes over a course of time. I’m giving blood samples every three months.

Teresa, I too was a little surprised by men treating me, but as you say after the initial shock we get used to it, they are very sensitive to my feelings, and put me at ease chatting about everyday things whilst manouvering my torso. I’ve had men on only two occasions, I mostly have women. An art therapy class … that does sound interesting.

Gosh Marian, you’re having some bad luck, I hope today’s session went well and was on time.

JCJ, glad you were able to enjoy a birthday lunch, and pleased you aren’t feeling tired out today.

Weme, I’m not surprised you are tired, it cannot be easy to be working during rads. Sorry you are suffering sore skin, I have some aloe vera ready in case I need it, but a nurse I spoke to before my first rads didn’t approve it! However, I’ve read on these forums of lots of women who’ve used it.

tired1, I hope today’s session was less stressful for you; I’m sure you’ll be more relaxed now you have no fear of the unknown. Good luck.

Amysmum, I too have had students in on a couple of sessions this week, one seemed to take forever to position me, I mentioned it to the Radiotherapist and she said ‘don’t put up with it if you find it an added stress’, I was a little agitated as he took so long - the experienced staff have me positioned in no time, but I’m reluctant to complain as students have to learn.

Mujum, your first session is getting closer. If your experience at Jimmy’s is similar to mine you have nothing to worry about, the staff are wonderful, and as for the actual radiotherapy you won’t feel anything, the pain is having to travel there daily.

I had my 7th of 20 today, so 1/3rd done. On arrival I saw an information notice saying my team were running 45mins late, and thought oh no! However the receptionist went off to ask if they had managed to catch any time back, her news on return was good - they’d caught up, infact I got in 5mins before my app. time, and I was in and out in less than 15mins.

I hope everyone has a lovely weekend, take good care all.

Libby x

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JCJ Happy Birthday, hope is has been a nice one, certainly one you wont forget I’m sure. Had my bone density results today. Hips are good and spine is well above average! Whatever that is but still reassuring to know. Have a lovely weekend everyone …xxPam

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Seems like most people on this thread are at Jimmy’s but not surprising as it is the largest oncology dept in Europe. And what lovely staff.
2nd zap today and not half as bad. Went to see Ruth, the meditator again. Very relaxing and calming - I recommend her to any of you. Shame to then have to sit in the car for an hour to get home.
Glad so many of you are having no SEs.
Going to the Haven on Monday after zap 3 for ear acupuncture. My BCN says it can be effective against hot flushes and night sweats - oh for a dry night!

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Good evening to you all

Zapping number 7 today and feeling awful tired. Had the skin specialist nurse checking me today again as my Onc is a bit worried about my skin holding out without breaking down, after the horrid time I had with my wound. So far no signs of any problems so I will continue with slapping the cream on and drinking plenty of water.

Glad to be home for a couple of days now before I am heading to Aberdeen again to stay for the Week’s treatment at Clan. Could not believe that it was snowing on our way home this afternoon and it is sleeting at the moment. Going to cuddle up with my cat and a coffee on the sofa for a while.

Have a nice weekend everybody

Alanaa and Fat Cat xxx

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Looks like we have all got through another week of rads - and mine was on time today. I was seen on time today although they were working with one machine down again - its just as awful for the staff when things go wrong. I have had 9 sessions now so almost half way and feeling better than I thought I would at this point. Have a wonderful weekend everyone and give ourselves and each other a big hug. Marian xxx

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Yes big hugs all round!

Amazing how many of us at Jimmys or Cheltenham this month! My kids were both born at Jimmys so it holds a special place in my heart!! xx

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I feel quite left out, being over in Ipswich. Is anyone else over this end of the country?

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Hi Carrie - you asked about any advice for healing - what have they advised you about the exercises?

I’m now four months post-WLE, one month post-Rads, and I still have to be careful not to pick up shopping bags, big pots of food, etc (with the other arm, I mean!). But maintaining the exercises is definitely gradually building up my strength and the area’s been feeling much better over the last two weeks.

Being able to get out for some blood-pumping walks would be good, too, but it’s pretty hard with this rubbish weather!

Good luck,
FC

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Hi AmysMum

I’m in Bury, and am currently travelling to Ipswich for radiotherapy. I’ve just completed the first week of three.

So, you’re not the only one out this way!!!

So far, all going well. I was very tired by Thursday evening so am taking it easy this weekend, to be ready for next week. I haven’t noticed any effects as yet, so just slapping on the Aqueous +++!!!

Feel free to PM me, AmysMum. Maybe we can meet up for a coffee???

Cheers

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Hope everyone had a good weekend. It’s nice to be away from the hospital fo a couple of days.

Teresa - My weekly reviews look like they’ll be a bit rushed too. They had to fit 9 patients into an hour last week and I think I only got a bit of time because I was first in and no one else had turned up yet.

JCJ - Yes, it seems a bit late to have a review right at the end. Hope you had a good birthday.

Marian - What a time you’re having with the machine. It’s bad enough having to go every day without having to allow extra time for it.

Weme - Hope the skin doesn’t get any worse now you’re so near the end.

Pam - That was great news about the bone density scan.

Mujum - I’m also wondering about bone density. I wasn’t going to ask for a test, but think of asking if I should start taking supplements. I used to take calcium and vitamin D but onc told me to stop taking anything before chemo.

Tired - I think it’s common to feel a bit of a panic the first time. I expect it’s too early to have any real SEs yet. Let us know how the ear accupuncture goes.

Caroline - Hope the wound heals soon and you get this over with too.

AmysMum - I worry about breaking their concentration when being lined up as well. At least with the trainees you maybe get some more info about things you wouldn’t think to ask about. I’ve not seen any trainees so far.

Libby - Yes, you do feel the trainees have to be given the opportunity to learn.

Alanaa - Hope you don’t get any more snow and you get a bit of rest staying nearer to the hospital this week.

FC - Yes, I wish the weather would improve. Could do with a bit of a walk and fresh air.

I’m heading in early today to get an MRI to check out a lesion on my liver that was picked up on a CT scan a few weeks ago (when they were actually looking for something else that turned out to be nothing to worry about). Surgeon thought it was benign, but checking it out anyway. Radiotherapy unit said I can head over afterwards and they’ll take me early, so don’t have too much time to kill between appts.

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Zap 5 down - (or 17, 18, 19 and 20 to be precise as it does 4 blasts each time!)1/3 of way there now. Got there 10 mins early and went straight in!

Finding a bra rather uncomfortable now but managing to wear it for trip to hosp and back. No skin problems yet, but it does feel a bit hot!

Got a friend to take me today so OH could have day off. First sunny day in ages and it’s his birthday. Give him chance to get on his allotment, which he’s been fretting about cos he had a broken leg all through that lovely March weather, and it’s rained ever since he’s had the cast off!

They’ve changed my Friday zapping time to 10.50 so I can see the oncologist to sign consent forms for REACT (anti-inflammatory) trial - that’ll be better. It messes the whole day up having to be there for 2.30pm when it’s a 2 hour round trip!

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Had my eighth zapping today. My app. was 5.00pm, I arrived a few mins early and was called straight away. Another twelve to go.

Tiredness has started to affect me, but no pain as yet. I’m slathering on the Aqueous, apply it morning, noon and night and sometimes inbetween.

I hope your first zapping went smoothly, Mujum. In which room are your treatments? Mine are room five.

Did everyone else have an easy session today - I do hope so.

Only four more days this week ladies, and then three days off, yeah!

Take great care,

Libby x

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First rad today went well. We (self and OH) had 20 minutes chat first, with lots of opportunities to ask questions. Some of it was covered at prep session, but it’s useful to go over it again and also OH could hear it all too. We were also reassured about the seroma - senior radiographer said had never had to delay treatment because of seroma. Then into the treatment proper, all very caring and professional - millimetre perfect, which is reassuring. Didn’t take long either. Now a little tender, but have used the aqueous cream so it ahould be fine.

Must have just missed you, Libby - I was in room 5 today too, left just before 4.40.

OH insisted on coming too for 1st time, but think I will go alone for rest, except when I see Dr. Not a good use of his time, really. If I get tired, will ask again.

Hope all doing well - this experience is certainly better than cold caps and cannulas!

Hugs, Mujum

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Hi,
I can’t get into my messages on here and have been trying to post but has only just let me I’m n

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Zap 8 done. More than half way now as only 7 to go! :slight_smile: Felt ridiculously tired yesterday, but not so bad today - almost feel like my old pre-BC self. But that’s probably because I’m not trying to do very much!!
Got the zapping routine sorted now. Strip to waist and use cotton t-shirt as cover - up, clutched to bosom as dash across room. Onto bed. shove t-shirt down across waist as sort of comfort blanket, ready to grab it for dash back to changing cubicle! This is much less embarassing and humiliating than the first day when I wore an M&S support vest, left it on, but with straps off, and they rolled it down, struggling to get it past under my beached-whale torso. Much wriggling and tugging later…
Glad this site is back up. I felt strangely bereaved yesterday, missing you all!
Hope everyone is doing OK. My skin is still fine with regular applications of aqueous cream and leaving bra off whenever I’m in house - which is most of the time! - and wearing loose cooton shirt (or - let’s face it - a lot of the time: my cotton nightie! :slight_smile: ) It feels much hotter than the other boob, and looks a bit redder (and smaller :() but it’s not too bad so far.

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Yes, it has been strange to be without our virtual support network - just as my rads were starting too. Just back from #4, so only 11 to go, and next week only 4 cos of bank holiday.

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Hi All

Good to see the forum back up again. I’ve been to work yesterday and today I had my last rad so I guess that means I have finished active teatment - yeah! I hope you are all doing well, it has been difficult to find latest posts but hopefully they will sort out the forums soon. My toe seems to have got better (no sign of the nail dropping off any more) but now I have a problem with my armpit where the rads have gone, it’s take a few layers of skin off and now is raw and weeping, they’ve tried to fix it the last couple of times I’ve gone by putting a second skin on, but it has finally started weeping now so they have put a soft dressing on and given me more to replace it with but being in a difficult area means they may not stay on. Got an appointment with my nurse at gps on Tuesday to see what they think as the radiologist told me to do that.

I hope you all have a great weekend, lets hope for some nice weather as it’s a long one.

Weme