Weme - Sorry you’re having problems with your skin. Hope you get it sorted out soon.
Got the MRI results back yesterday. Looks like the lesion on my liver is benign, it’s called a hemangioma, so one less thing to worry about.
Having a few problems posting with the new site, so will see if this works.
Weme - Sorry you’re having problems with your skin. Hope you get it sorted out soon.
Got the MRI results back yesterday. Looks like the lesion on my liver is benign, it’s called a hemangioma, so one less thing to worry about.
Having a few problems posting with the new site, so will see if this works.
Huge relief gail5 about your liver. The waiting for results is just the pits isn’t it?
I had zap 9 today. 60% of way through. Also saw the REACT trial nurses and doctor and signed the consent forms. I had my lungs and heart listened to and both boobs thoroughly groped. It was rather disconcerting to be asked to strip off top half in front of the 3 of them in a tiny space, and then be mauled about by a bloke with 2 nurses watching! I should be used to the indignities we face by now, but I’m not!! At least during RADs treatments I get to change in private, in a cubilce, before the group manhandling! Having the ‘poorly’ boob examined was rather painful, but they said my skin was doing very well.
How difficult is it to ‘breathe normally’ after you’ve been asked to breathe deeply? Is it just me? I can never remember what ‘normal’ is when asked to breathe that way!!
I have ECG and blood tests on Wed next week - at a different hospital to RADS! - to check whether I’m fit enough for the trial. I’ve asked them to check hormone levels while they’re doing blood tests because I suspect I may not need Zoladex after all - MAY actually have reached menopause naturally! (There’s always hope?)
Enjoy the 3 hospital-free days everyone! Let’s hope we get some decent weather! Chris x
I’ve now completed 10 of 15 Rads. How the days/weeks have flown by. So far, all seems ok. I’ve noticed a suggestion of slight tenderness today but that’s all, so I’m pleased so far.
I’ve been very tired by the end of the week, due to the driving but, again, that’s been ok. Looking forward to a rest of the weekend now, for three days!
I hope you all are doing ok, and have a good weekend.
cheers
Yes, 5 down, 10 to go, one third of the way through. (This is the way I usually count my lengths when swimming, mixture of fractions and percentages to help me feel I’m achieving something!). So far, so good, and treatments on the whole have been on time - just one was a 40 minute wait but they had been recalibrating the machine - and it meant I bumped into Libby and her husband, so it gave us an opportunity to catch up, which was nice. Yesterday’s was actually a few minutes early and I was out in time to miss the worst of the evening traffic. Skin seems to be holding up OK so far, a bit pink but the only tenderness (very slight) at the corner of my MX scar. Aqueous cream seems to do the job. And so far, not really getting tired - I am lucky that I don’t have far to travel and can drive.
Gail, good news on the MRI scan, that must be such a relief. Upward and onward! Weme, sorry about skin reaction, hope it settles down - should be a 3 day rest over this weekend.
Chris, trail preps seem very thorough, so despite indignities, should be worth it. I tend to close my eyes when the blokes get to do the body shifting etc - pretend it’s not happening.
Have a good 3 day weekend, all - despite cold weather, at least it’s dry so far. Hugs, Mujum
Good morning to you all. Back from Aberdeen for the weekend at home. The Clan Haven has been out of this world. The staff, accommodation and support are beyond words. It it the most beautiful and serene place and I am sorry now that I resisted to stay for all of my rads. Going back on Monday as we still get treatment on the holiday, but have only Monday, Tuesday and Wednesday left. Turning a rather nice shade of pink now but no breakage of the skin as yet.
Had a bit of a blonde moment on Thursday as I felt a bit dizzy after the session and took a tumble outside the hospital. Talk about feeling like a right muffin. Left knee and right elbow are now turning a rather interesting shade of blue and my knee is rather swollen so a quiet weekend with Fat Cat is on the cards.
Wishing you all a nice weekend and sending a gentle hug
Alanaa and Fat Cat xxx
Hi All
Weme, sorry I didn’t Skype you yesterday, as soon as the kids are back from school they hog the computer something rotten! Great that you have now finished! Yay! But the skin not so great - hope it has improved today. Mine is just sore and kind of dark looking. Rather like a kind of slightly burnt sun tan,
Gail great news on the liver scan. When I had my CT scan in October they said there was a “fatty lump on the liver but nothing to worry about”. I haven’t given it a second thought, but have a feeling I should quiz onc a bit more about it when I next go in.
JCJ I know what you mean about being manhandled and the breathing. When they go out of the room, you tend to focus on the breathing and I’m there thinking “don’t take a deep breath”, then I breathe too shallowly and fast. Not good!
Mujum well done on getting half way through - it’s a milestone! When are you planning on going to Greece? We love going to Crete, but haven’t been in recent years as it’s so hot in the summer and all my lot (hubby and 2 kids) are gingers so they aren’t good in the heat!
Oh Alanaa sounds like you’ve had a lovely rest at the Haven - only 3 more treatments, same as me. My last one is on Friday 11th - also dd’s birthday, hope I have some energy and enthusiasm left!
I’m doing OK. Treatments next week Tue, Wed, Fri then done! Can’t wait, but wondering what will come next after I have rested and recuperated from the rads. I’m reading Lance Armstrong’s book at the moment. He is one incredible man., and there’s a paragraph I read this mornign which really resonated with me. I will try and transcribe it and post it up. Chest is sore but OK, and I haev some tenderness where the scar goes unde the arm. Also the lymphedema in that arm is still present, but everyone hopes it will go with regular SLD and nce rads have finished. It was suggested to me that possibly the fact that the clavicular nodes are blasted could mean that they kind of harden a bit and so the lymph doesn’t flow as well, sounds plausible but I don’t know!!
Zap 10 done. 2/3 of way through. I am soooo tired now, don’t know what to do with myself. I suspect part of the problem is the recurring anaemia I’ve struggled with for a couple of years. Gave in and took some iron meds this morning. Was trying to hold off, as I have blood tests tomorrow and wanted to find out if I actually NEEDED to take ferrous fumerate any more as pre-op bloods showed iron levels quite high. Think my body has given me the answer as I feel cr*p and inside of lower eyelids almost white - a dead giveaway!
Hoping anaemia - if that is what it is and not just Rads fatigue - will not stop me going on REACT trial!
I had 2 students lining me up today for zapping. Quietly overseen by the ‘boss’ who’s been there every day so I wasn’t worried. The poor things took aaages and were so apologetic every time they touched me - (esp as one was a bloke who tried his hardest to avoid actually touching me anywhere ‘inappropriate’!) despite my tiredness (or because of it?) I felt reaaly sympathetic towards them. we’ve all got to learn.
Hope all the other April ladies are holding up. This thread has gone quiet. Not sure if it’s the move or everyone’s asleep! 
Hi
I’m running close to you, JCJ, having had 11th of 15 today, last one Monday next. I haven’t noticed any skin changes as yet, only a slight suggestion of tenderness (which seems to have lessened over the weekend break) but, yes, tired although clearly not as tired as you are. I was very tired over the weekend, though. I think driving 60 miles a day is making me a bit tired, plus sitting with my elderly father during his last days/weeks so a very emotional time.
Anyway, holding up well so far. I do hope everyone else is ok. Yes, the April thread has gone quiet so maybe everyone is asleep! 
Zzzzzzzzz …
Take care everyone
Just back from #6 of 15. They were running around 15 minutes late, not surprising given bank holiday yesterday - but as always, they make the experience as pleasant and supportive as possible; and they are always so meticulous. I asked them to outline the area they are actually radiating so I can be sure to be careful about the sun when we go to Greece (only 3 weeks to go!). The onc has been very repetitive about covering up and I am assuming that it’s about skin reaction after chemo as well as rads. I did buy a sunhat at the weekend, and have been looking at which cotton tops I have which cover my shoulders and arms - sadly, looks like I will need to wear a tee shirt while I swim. But if that’s what it takes …
Pam, it must be really tough managing imminent bereavement as well as rads - the emotional energy needed will be massive. Sorry that others are getting tired - hang in there, you have nearly finished!
Teresa, as you see above, we fly on 29th - to Aegina, a small island near Athens, where we have a home. This has been my beacon all the way through my treatment - chemo, mx and rads. We like Crete too, but you are right, it’s blisteringly hot in mid summer. Aegina’s climate is more temperate and manageable, even in July and August; but we like it best in May/June and September/October. But we have eaten outside and BBQd on New Year’s Day, with temps of 21 degrees, such a liberation compared with English winter - and lighter too, you get at least an hour more daylight at each end of the day. My OH isn (was) a ginge too, but he has learned to manage sun so that he doesn’t burn.
Only 3 more treatments this week! Then I’ll be 2/3 through … so much easier than chemo so far.
Have a good evening, all, hugs, Mujum
Here you all are…found you at last! Rads tiredness has really set in now and I don’t have the focus or patience to work out how to navigate the new site. I’m sure all will be fine here soon.
I had my 13th session today, seven to go. Also had an appointment with the rad’s specialist nurse, and she was lovely. The app went well, very leisurely.
I went for a short walk to the shops about 15mins away, and was shattered when I got home, the cumulative affect has definitely kicked in, I’m much more tired than last week, no sore or red skin though but a little itchy.
Gail, congratulations on your good result from MRI, must be a massive relief.
Good luck JCJ for tomorrow’s blood test and ECG.
Everyone else - keep going ladies, not long now…we are all on the last lap. Apologies for not answering all individual posts, I’m just too tired but wishing you all well.
Teresa, when I’ve worked out how to pm I’ll get back to you re Birmingham.
Love to all.
Libby x
Hi All
Glad all is going well. Still not used to this new forum! All the recent messages seem to have gone astray and if I scroll up I am back to the first page, so forgive if I forget to mention you!
Mujum, Aegina sounds lovely and I am very jealous! No-one has said anything to me about the sun but I guess by the end of August in Spain it won’t be as soon after treatment so hopefully will be OK. My gingers have learned to manage the sun too - plenty of sitting in the shade with good books, and always a hat on! I suspect I may be joining them this year!
Libby I’ll look forward to hearing from you, are PMs available on here yet? If not I think you might have my email address, feel free to email me or find me on Facebook if you use it.
I am tired too, but not as bad as I thought I would be. Maybe because of only having 13 sessions, not as many as some of you, but the same as Weme, as we’re both in Cheltenham (as I may have said before!!! lol) Anyway it’s my penultimate today and my last one on Friday, but what worries me is what happens next, without the safety blanket of the hospital. In many ways relief, and in others worrisome I suspect. I have a nap every afternoon, which helps with the fatigue, and I have had a little rota of friends taking me to Cheltenham and back for all my radiotherapy sessions, which has been lovely - nice to catch up with everyone as well. Combined the hospital trip with a little retail therapy yesterday too - but an hour is all I can manage!
As someone else said, the staff are lovely and I will take in choccies on Friday I think…
Love to all
Teresa xx
Hello eveyone
It is indeed quiet on here. I still have intermittent problems with losing connections to this site - I have less than a 50% hit rate of navigating all the way through to this post.
I am about to leave for 17 of 25 shortly. I am getting quite a tan-line between the 2 areas (breast and collar-bone/neck lymph nodes) that they zap. To ensure that I don’t get over-cooked, they leave about a cm between the zaps and I have quite a pale line there. The itchiness has gone. I am sure it was caused by the zip of one coat. So with Aloe Vera once a day and aqueous 1-2 times my skin is doing just fine
I too am finding this loads more manageable than chemo. Apart from the waiting at the hospital (an hour yesterday as one machine was down and then another broke but some of the prostate men had had their water so really couldn’t wait longer) it is OK. Mind you, I am only 5 miles from the hospital, so that is an easy journey compared to many. Yesterday I went into work after Rads and climbed the 2 flights of stairs no problem. I was puffing and panting like a much older person during and just after chemo, so my body is definitely recoverring from that.
Hope all the zaps go well today
Sue
Good morning All
I too have been a bit slow in getting to grips with this new layout - fingers crossed this will post. It looks like we are all moving forward in our own way but mostly with not too many challenges. My initial challenge with broken machinery and delays sorted itself out. Who could have guessed that a lightening strike would damage all the generators! The staff, who are totally gorgeous and kind, were as frustrated as the patients and really tried hard to sort us out. I have now completed my 15 treatments whoopee and had my first boost this morning at 8am. My skin also seems to be holding out quite well (touching wood frantically) and I have my final boost next Tuesday so looking forward to life without rads. I am a bit tired with some stiffness but I suspect that might be more to do with sanding and painting 4 doors over the weekend. I have a bone scan scheduled for Wednesday and hopefully I can then book a holiday. My oldest son who is working in Australia at the moment is coming home at the end of the month for a holiday and I am so looking forward to seeing him as I haven’t seen him since last September. Hopefully we can all have a week away somewhere although he has requested somewhere cool and damp for a change !!!
Love and Hugs - Marian xxxx
Keep losing my posts, but having another go. JCJ - hope the ECG and blood tests are OK for your trial. Teresa - the lymphoedema is improving. Marian - hope your bone scan goes well. I’m halfway through now with 10 of 20 rads done yesterday. Not much sign of improvement as skin still firm and breast still swollen. Have been told it’s early days but am a bit worried if this doesn’t reduce the BC enough to operate as hormone treatment seems to be all that’s left after this.
Zap 11 done, preceded by an hour and a half at a different hospital having weight, height (again - don’t think I’ve grown or shrunk since pre-op!!) blood pressure, blood tests, pregnancy test (immacualte conception??) and ECG. All OK, as far as I know - nobody gasped at any rate. Blood pressure was high, but they did take it in the ward where people were receiving chemo - didn’t help my BP! especially as I’ve recently had to decide whether to have that or not!! It’s stupid but I still feel a bit guilty about saying ‘no’ even though it was entirely left to me to decide!!) Blood test results wont be back for a while, but if all OK I should get my trial meds (anti-inflammatory or placebo - which I call ‘flim-flam’) on Friday when I go for Rads.
The Radiographer asked if I was ‘coping’ OK with my skin so I expect she’s expecting it to get worse before too long. Just a bit hot and red at moment. Not too uncomfortable, and I’m applying loads of aqueous cream which is keeping it moisturised and cools it down. Glad I didn’t fork out on aloe vera as, so far - (touches wood hastily!) it’s not been needed.
I’m finally managing to navigate this site quite quickly (apart from the wait for the pages to load!) as I can now remember where the various threads are on the left hand side. Wish I could switch off the emails telling me people have posted tho’ cos my inbox is getting ridiculous! I thought I had stopped it but they keep coming.
Test results back, apart from a couple of bloods, which take up to a week. All OK for trial. And I’m NOT pregnant!
Zap 13 done only 2 to go. I almost wish we didn’t have the weekend off - then I could get them out of the way and finished!
Zapped on a different machine today - the one that keeps breaking down! - because MY machine was used to help out this one, earlier in the day, and they were helping them to catch up again.
Hope that doesn’t happen on Tuesday as I’ve got some chocs for the team as a parting gift. Oh well! May have to eat them myself!
Hi
JCJ, Glad your test results came back OK and I guess the negative pg test wasn’t a huge surprise. Hope you don’t have to eat all the chocolates.
I have done 19 out of 25 so far and apart from a definite tan-line between my breast and where they zap the lymph nodes in my neck, my skin is holding up really well. Just going a nice shade of brown. My armpit and breast are a bit swollen, in a “I need lymphatic massage” kind of way. I am seeing the nurse tomorrow after my zap (number 20 yay) so I will talk to her about it. My arm movement isn’t bad so I am not very swollen. And I keep doing my past-op arm exercises to see if they help.
All I need to do is convince dh that tiredness is a genuine side-effect of rads and no, I don’t why they make you tired, but yes they do. And life will be happy.
AmysMum, The reason rads make you so tired, (and why you need to eat plenty of calories! :)) is that during radiation all cells in the area are damaged and the body has to repair them. It’s like feeling tired when you are ill because your body’s immune system is working on overdrive. Don’t know why tiredness should be worse after rads than chemo though, which is what many people have told me.
I’ve been ridiculously tired on and off - but it’s getting more on than off as I approach the end. Trimmed the edges of both lawns today but had to have a sit down in between. Normally I mow and trim edges of both lawns in one go - no bother - it’s not as if we have substantial ‘grounds’!!
Trying to keep as active as I can, but I definitely have to pace myself. Rads nurse said not to expect to be back to full energy levels for THREE MONTHS (by then I’ll have forgotten what full energy is?!)
Looking forward to Wed when NO MORE RADS yay! - and the delights (?) of starting ~Tamoxifen and making appointment with doc to see about Zoladex. The joys!?
Hi girls
Pleased to hear your results were ok JCJ and, yes, just 2 more zaps to go.
I had to postpone Friday’s treatment as had been called in at 2.45am (that morning) as my father was not good at all. So, Friday was a very long day, as have yesterday and today been. He’s still hanging on in there …
So they have booked me in for my last treatment on Tuesday, so just tomorrow (Monday) and Tuesday to go, as JCJ. A lie in on Weds???
As you other ladies, I’m exhausted this weekend. Partly due to driving during the week, partly due to being up half Friday and Saturday night but suspect the Rads tiredness has kicked in a bit too. So, will try to get some rest this coming week. I’ll get comfy in my Dad’s chair, feet up on another, by his bedside!!!
As AmysMum says, skin is holding up incredibly well, so far. Hardly any pinkness, even - only with good imagination!!! Sometimes, I get ‘stabbed’ gently with a needle but not much.
So, best of luck to you all for the coming week. Take care
J