I wouldn't describe it as tripping exactly, more my legs shooting out from under me and sitting down with a bump! I live a few miles outside Dorchester, we're about 10 - 15 minutes from the sea on the stretch between Weymouth and Poole. So our local beaches are at Durdle Door and Lulworth Cove, don't know if you know them, but the path is seriously uphill and down dale along there. Apart from the places where it's fallen into the sea...
That sounds lovely Helena, I love walking on towpaths. Sometimes a walk with no hills would be great, I live really close to the South West Coastal footpath, but you do three times the distance slogging up and down massive hills, you can't really do any flat walks round here. And when the hills are so steep, it's also a pain when it's a bit muddy, I have come a very undignified cropper in the past, but perhaps we'd better not go there!
I have just had my first post rads lie in, feels wonderful. It felt like such a slog, don't know if it was worse because I started and finished midweek, which meant four weeks instead of three.
So Helena, I completely get how you're feeling, you hand your life over to them for weeks on end and they can't even give you the list of the appointments so you can plan around it. But you get through it, and it feels great when it's done!
Having private insurance but not using it made me wonder sometimes what would have been different if I had gone privately. I don't mean in terms of free coffee in the waiting room or the other bells and whistles that don't count. But the things that don't cost anything, don't take time, and are more about attitude, I think some of those might have been different. I'm not always the world's greatest fan of the NHS because of things that happened in the past, and my sister's experience of the French system, which is so different. For example, the wait for test and biopsy results, it's an eye opener to realise how quickly they have the biopsy results but how long after that before they tell you.
Anyway, that's the end of thought for the day ladies, hope you all have a good day. I don't know about where you are, but here the sun is shining for the first time in about a week, and I am going to put some Christmas carols on and make mince pies!
I expect we'll still be around here for a bit yet. If the effects are meant to carry on happening for two or three weeks, we'll keep you posted!
Congratulations Gillie, all done too! I am so glad to be finished, it seemed to take so much more effort this week.
Oh Helena, bless you and thank-you. I will keep tuning in to find out how you are getting on.
The time will go really fast, but Dizzy is right the last few days did drag. It was like .... I can't believe I am still doing this. We went out for a lovely lunch and a glass of wine and then I must admit I did come home and have an hours snozz. Lovely.
Good night all, sweet dreams and thank-you so much for your support.
Venlafaxine has always suited me really well, it certainly sorted out my mood swings and I don't think I have ever had any symptoms I would attribute to being side effects. As I said previously when I started taking Tamoxifen I was really worried it would affect my mood but so far so good, after 6 weeks.
Hmm, I'd better not get started on the parking issues. We did ask if there was any sort of discount scheme if you were doing five days a week, yes, if you're there all day you can pay £16 for a week, but otherwise, nothing doing. And no parking spaces or special car parks. It's only a couple of quid a day I suppose, but it soon adds up with the petrol as well, we seem to be filling the car up every five minutes.
But I'd forgotten that I can claim something from our insurance, I took the forms in today to get them signed. We have medical insurance on my husband's work policy but never used it, right at the beginning we were told it was better to stick to the NHS for cancer treatment.
Ali, so you don't finish on Friday? That must be annoying, to have to come in for one day between Christmas and New Year. But nearly there, I found the last two or three days really seemed to drag.
I'm thrilled to say that today was 15 / 15 and so that's me all done! Thank-you very much NHS! I don't have to go back until the end of April and I'm hoping not to see that machine again, ever!
Nobody rings bells at the Norfolk and Norwich, they seem to be too busy getting the next person in quickly, but that was fine by me.
So, as I think it was you who said Dizzy, we pack-up our hopes and fears now and move on. When you think about the out-look for women in our situation in previous generations I feel very lucky.
Don't ask me how it started, but it seems to be traditional to ring a bell when you finish rads. My unit has a big brass bell hanging on the wall, and everyone has their photo taken ringing it. So we've joked about ringing our doorbells to celebrate when someone finishes.
Well I've just eaten a huge lunch out to celebrate, and now feel like sleeping it off for five minutes, I could blame it on the rads except that's how I always feel after a big lunch and a glass of wine. I'm looking forward to that lie in tomorrow morning, and not having to scratch around trying to find change for the car park.
OK so I'm finally going to admit it - don't know anything about doorbell ringing other than you all are obviously ringing them when someone finishes! Would love to know its origins. Oh and I'm afraid I don't have a doorbell, so what can I do instead?
Am now very tired after uninspiring trip to the nursery (didn't get anything we wanted) which was crowded with families going to see Father Christmas!! (my husband was not amused). x Jak
Hope you are all feeling positive on this lovely rainy day? (in Hampshire anyway)
I am going OUT today!! Not to the hospital but to buy last bits of Christmas presents. Can't believe I actually feel like going - things are definately improving!
Dizzy - cheers to you today - push that boat out!!
Gillie - Thank you for your comment, I take fluoxetine but oncologist has suggested venlafaxine. I'm not being given tamoxifen - anastrozole for me (breast consultant thinks that will be better for the depression). My GP has retired (we had a long term plan for fluoxetine and retirement - I was really well before diagnosis of BC ) so I am not sure how his replacement will be - seemed OK when I first saw him for my fit note. I just wan't to be able to return to work at school emotionally stable as it's not something you can hide from children and my job can be quite stressful. What have the side effects of venlafaxine been like for you? I also take epilim which is an epilesy drug that has been found to regulate mood swings.
Treeze - We will be starting rads at nearly the same time (4th) I'm having 15. Most of my appointments are at 9:15.
Big hug all round,
Ringing that bell for you Dizzy!!!! Fantastic to be through rads! So chuffed for you xxx
Well I never have yet so I'm not likely to start now! But just having roughly equal sizes would be a good start.
The first operation was a therapeutic mammoplasty, so a lift and reduction and recreating a proper shape by moving all the remaining tissue round. But then I didn't have clear margins, so he had to go back and undo all the good work. So currently I have an E cup and about a C cup, but they told me to expect the radiated side to shrink and become firmer. One surgeon said to leave 2 years before the symmetrising surgery, my surgeon said six months should be enough. But that's the last hurdle now, but I go to see the prosthetics people in January for some sort of partial prosthetic in the meantime.
Good stuff Dizzy. So you will be ready to go top-less on the beach by next summer!
Oh Treeze. That is wonderful, now you can enjoy xmas.
Happy Zaps to everyone today! Although Dizzy you will have finished already, jingle jingle (xmas door bell).
Love to all, Gillx
Great news on the kidney scan, Treeze, that must be a weight of your mind. And I'm glad you have most of the travel sorted, I know you have a horrible journey. Did you get the appointment times you wanted?
Well I am done and dusted, I have a few spots on my chest that the radiographer says are outside the treatment area and probably caused by me sloshing the E45 far and wide. And she could be right, heavy moisturisers do bring me out in spots. Apart from that, my scar is very pink, the rest of me is a bit warm and rosy, but not really sore. It really does feel like I've been out in the sun.
So that's it, follow up radiotherapy appointment in four to six weeks, and then nothing till my next mammogram, and symmetrising surgery at some point when any post rads shrinkage has happened, about six months.
I've completely abandoned my gown, only wore it for the first day. They're in such a rush to get rid of me I think they'd send me off with all the tapes undone, there's no time for anything like that. So I just wear a vest and a jumper, takes two seconds to peel off and put back on. And I'm not allowed to wear the gown anyway, it's only there to lie on and they pull on it a bit if they want to slide me over.
It's not very dignified or caring really, I wish they had a blanket or something to cover my midriff, then I wouldn't be thinking about my flabby stomach as well as the floppy big boob and the shrunken little one.
Oh gosh, soon they won't be on show every morning...Yay!
I'm going out for lunch tomorrow, we booked a meal to celebrate finishing as soon as we got the dates.
I'm really glad not to be trying to work through any of this. It's not just the effort, it's the guilt you feel when you take time off, and even though you need it, you always know that it leaves the burden on the people covering for you.
The other thing that has made it much easier, my husband only works three days a week and one week in two he works from home. So he arranged with work to spend the whole time working from home, and this week he booked as annual leave. He's really tired as well, so it's good he's not having to work this wèek. He had a week owing as we had a week's holiday booked in October which we had to cancel.
We chose 8 am starts so he wouldn't miss too much work time when we got back, and the hospital is a nightmare for parking, but no problem at that time of the morning.
Lesley, having a lively nine year old doesn't sound very relaxing, specially at this time of year when they're all hyper. But it does make Christmas fun when you have young children.
Evening all! Everyone sounds pretty positive tonight which is lovely. Just completed 14 / 15, not sore and not tired and the long suffering other-half and I think we may go out for an xmassy meal for 2 on our way home tomorrow to celebrate. Yesssss! I saw the oncologist yesterday and have an appointment to see him in April just to check that I have healed up ok after the treatment.
Welcome Vicki and Lesley, so glad you have joined us. I have to say these ladies have helped me through my treatment and it has been so good to think that I am not alone in struggling with this.
Vicki you asked for advice, actually my skin hasn't been too bad and I have mostly been wearing my normal bras but towards the end I have started putting a 100% cotton hanky between my skin and my bra, this has protected the bit under the bra where the wiring is which was begining to get sore. Somehow just now the whole of the boob feels more comfy with the hanky in place, my scar is around my nipple and latterly that has needed protecting to. You say you are due back to work when you start rads, I retired earlier this year and so haven't had to work through the treatment which in terms of fatigue and emotions I think I would have found really hard. What I would say is that if it is too much of a struggle then don't stagger on, get signed off. Look after yourself - no need for superwomen here! All the best.
Lesley - I am sorry you are feeling tired and fuzzy headed. My experience was that at about days 4 / 5 / 6 I was feeling tired, muddled and emotional and my boob was pretty sore but that wore off as the second week progressed. At about that time my two grown up daughters came home for a pre-xmas weekend and as that progressed I realised I had cheered up and seemed to have a normal amount of energy and I've been fine since. I'm pretty sure it wasn't all in the mind though - so be kind to yourself. This is all so physically and emotionally traumatic - and we are courageous ladies!
Helena - well done! 1 down, how many to go?
Jak - As a long time user of venlafaxine (those little pills are fab) I have been really concerned about if it would be ok with the tamoxifen and if they are compatible. So far so good, fingers crossed. I am really sorry you have to go through the process of changing your depression medication on top of all you have been through already, that is tough. I'm sure your GPs will have seen people through this process before so they must have a plan. Do you have a GP who is understanding about depression? Some of ours are great some less so.
Well, I can see a huge pile of pressies before me that need wrapping.
Sleep well all and don't dream about those truely awful hospital gowns.
Sending love and positivity your way. Gillx
luck or brilliant....I'm just really chuffed for you that you haven't been as sore you could have been. As you say, we have no control as to how skin or body will react so we have to go with the flow.
I really thought I would have even ok, I don't burn in the sun even though I'm really fair but clearly that has nothing to do with it at all. The daily travelling is really hard and I can't say I've missed the journey today. I won't be going to Swansea in a hurry for a while!!
last one tomorrow for you and I'll be ringing that bell for you! Other than my booster areas, the rest of me is a week post rads and is still getting redder but it's definitely slowing down.
Hopefully you won't get much fatigue but make sure you take time to rest and draw breath. It's all so stressful.
I'll be thinking of you tomorrow
I haven't been brilliant through this, I've been lucky as hell. It's not like you don't get side effects because you put your mind to it, or you get them because you haven't tried hard enough, you get whatever happens. This one has been good for me, but I have a ton of sympathy for anyone having horrible side effects because this comes at a time when we're all cream crackered from all the stuff that's gone before it, and doing this every day for three or four weeks is exhausting in itself. So feeling tired or sick or sore must be horrible, and you get no choice, you turn up again next day for them to do it some more, and you even say thank you on the way out.
It's funny you saying you can see the join more clearly on your scar now, I was thinking that about mine, it seems a lot more noticeable now. They say the side effects can carry on for two or three weeks after the end of rads, and the tiredness for a few months, so I'm wondering how that will go. But I'm looking forward to not driving off at the crack of dawn after tomorrow.
the peppermint oil capsules really did help. You can buy them in Holland and Barrett, and my GP prescribed them too - they were called Mintec. My pharmacist checked every book she had, and on the 3 online facilities they use and there was nothing linked between the oil and tamoxifen at all. She couldn't find any mention of an interaction - thankfully as I was like a balloon by then!!
Only took a few days of taking them and I felt much better. Worth a go!
Jak - I looked up that enzyme when I was trying to find out whether it was safe for me to take peppermint oil capsules as the tamoxifen was giving me terrible trapped wind.
Apparently the CYP2DS enzyme is what our bodies need to use/process the tamoxifen and block the oestrogen/breast cancer thing. Some drugs (including herbal ones) can interfere with this enzyme and stop it doing what we need it to do. Pharmacist did confirm peppermint oil was ok.
Thats why it's important that we check with someone before taking anything new. Even my GP said that the best person to ask is the pharmacist.
Hope that's of some use.
helena I'm so glad that today went well! Was thinking about you this morning. Xxx
dizzy...last one tomorrow!! Yay!! You've been brilliant through this! Unlike me lol Xxx
vicki - welcome welcome welcome!! I'm sure you'll find this lovely bunch of ladies really supportive and helpful. I sure have! They have kept me sane this last month and I'm very grateful to them all. Ask away, and let us know how you're getting on. This forum is very cathartic!! Xxx
hi polly - sounds like you have to be super organised for your appointments!! Parking was my worst nightmare for rads as my hospital is CRAZY but I was fortunate that hubby took me every day so at least if we could t park, he could drop me off and wait in the far till I was zapped. Ironically, we found a space everyday without issue! It definitely got quieter as December went on and for my last zap yesterday (yayy) there were only four cars in the rads carpark. Xxx
Apologies if I've missed anyone today - there's so much happening on here!
Im feeling good in myself today, but really itchy and the node scar is not looking good at all. I'm convinced the scar on my boob is wider - the join certainly is really visible now. See what happens next few days but may take myself off to the docs for a check before Christmas. This bit was the target of all my boosters so this isn't at its worst yet. I'm still happy though!! Feel a bit more like me which is a change lol
sending lots of hugs and love
I have really only started to feel tired today, day 14, but everyone is different, and I've seen lots of women post that they feel tired and sore from really early on. So I think it's pretty normal to be feeling like that. I guess the best thing you can do is accept it's going to be a bit of a slog and take everything as easy as you can. And presumably you'll have a couple of weeks that are only three or four days, so a bit of time off from the daily grind.
What you need is plenty of rest and tlc, have you got plenty of support at home? I think it's pretty tough if you live alone, but plenty of people have to manage this on their own.
Anyway, sending you a hug and hope you feel better soon.
I really struggled with tiredness and groggy head too, from about day 3, for about a week and then it wasn't so bad. Maybe our body gets used to it? For me, I found it worse if I took a sleep in the afternoon, so I just fought the tiredness for a few hours and then it wasn't as bad. Also drink plenty of water as radiotherapy can make you dehydrated.
Hope this helps x
Hi Helena, glad it all went okay, I was just so relieved to get going, you always worry more when you don't know what to expect. But how do you get a warm room, I was told it had to be kept cool because the machine mustn't overheat. The radiographers were saying how much they hate spending the whole day in such a cold room.
Jak, I don't know if it's any help, but I was prescribed mirtazapine recently which is an antidepressant which is okay with Tamoxifen. I think most SSRIs are banned, but there are some which are okay. I've been taking it for about five weeks, don't have any side effects and have got my mojo back, it had gone seriously AWOL.
Joking aside, I was really in a state, though whether it was the Tamoxifen or the fact that everything was going wrong at once, who knows? But I feel like myself again.
Hope you are having a good day? Helena??
Had a copy of the letter oncologist wrote to my GP. He wants me to change my antidepressant (been on same one for years) because it a strong CYP2D6(?) inhibitor. Tried finding out more online but all antidepressants seem to be inhibitors. Obviously double worried now because I have to balance the contra indications of hormone treatment with depression treatment and what effect it will all have on me anyway. I have joked about the fact the hormone treatment may help me cope with the depression!! Oh and I have to have a baseline bone scan.
Vicki - good to have you in winter warmers. My rads start on the 4th so we can compare notes. I had a lobular tumour removed which had, luckily, been spotted on routine mam. Yes it is a sneaky one. Nothing else shown in mri and I didn't have any in sentinal lobe but there are some pre cancer cells remaining. My wound is along the armpit vest line so hasn't been too much of a problem. I did, however, have an infection which has slowed healing emotionally and physically. I am to have 15 rads (just on boob as lymph lobes clear) and Anastrozole. No chemo (phew).
Good morning all!
Polly, I'm not sure if my quick throughput is because my appointments are so early, they haven't had time for delays to build up. But this morning I arrived at 8.15 for an 8.27 appointment, they called me straight away and I was out by 8.30. But they do everything in a heck of a rush, they had me sitting up while the table was still going down so I could get off as soon as it was down. But I'm sure all that hanging around must make this much more of an effort for you. My sessions take around an hour and a half from door to door.
I can't remember when you started rads, how are things holding up?
Vicki, welcome! That pathology results must have been quite a shock! I knew lobular is the sneaky one, so you had both ILC and IDC? I guess you must be feeling really lucky not to have to do chemo, though full node clearance doesn't sound great. I didn't have any nodes taken, not even an SNB, but I've heard lots of women say the armpit surgery is harder than the lumpectomy. Hope you don't have problems with arm and shoulder mobility, I have found they sometimes want my arms at strange angles for the radiotherapy. So that is one tip I would give if you still have stiffness or reduced mobility in your arms or shoulders, any stretching to help things would be good.
Apart from that, my tip would be to make life as easy for yourself as possible. So going back to work at the same time isn't ideal, did you have a choice? I guess it also depends how stressed you feel about going back, how you feel about your job anyway, and what sort of hours and travel time you have. But you may sail through all of this without any problem, people seem to have really different reactions to rads, and it seems like luck really. I'm fine, barely any skin reaction and no fatigue, but other people have had horrible side effects.
But coming on here has been really helpful for me, it's nice to talk to people whose going through the same things and understand how you're feeling. So it's good to have new people join us, glad you found us.
Ooooh having problems with my emogies here. That one was meant to be tentatively smiley.
Thank-you so much for your replies to my post on Saturday. And you really got what was bothering me - yes I want to put the clock back, silly isn't it? Not possible of course. One friend, truely impressed by my positive attitude said, but surely it must hang-over you. As if I was stupid to believe the positive spin the Docs are putting on the situation. Of course it hangs over me, DER. But Helena, thank-you, your friend is right - cancer is no longer a death sentence.
But enough about me........ 13 / 15 down. Not sore, not particularly tired.
Helena - good luck for tomorrow. There is nothing there to phase a brave lady like yourself and it's another step towards when we can forget about the whole thing for a few months. Personally I can't wait.
Dizzy - nearly, nearly there! And you are so wise.
Jak - I'm so sorry you are still feeling worn and tired. Good luck for your appointment, I will be sending positive thoughts through the ether........ When you think of the physical and emotional trauma you have been through it is inevitable that it's going to take time, but you are on course and you will get there. Virtual hug.
Beth - congratulations! Ding dong (I'm thinking more Leslie Phillips than door bell here). Have a wonderful xmas. And as you gather together all your feelings, experiences and stray emotions to put together in that box make sure it is a pretty box worthy of what you have been through. My favourite colour is green so I may go for some thing kinda floral, I'm that sort of girl. What about the rest of you?
Bottybo - now don't you wear yourself out! Easy for me to say I know but let the family look after you and have a lovely christmas.
Sending lots of love and virtual xmassy hugs through the ether! Sleep well my chums. Gillx
Helena, this is the last bit of uncertainty, after all the things you've already done, this one's the last stage. After this comes whatever follow up appointments you have.
I get a follow up appointment with the oncologist after 6 weeks just to check that everything has settled after rads. Then annual mammograms and nothing else. I'm on what they call the green pathway, which effectively means I can refer myself back to the breast team at any time if I have concerns, but they won't call me for any appointments unless the mammogram shows anything needing follow up.
Helena, you'll be fine tomorrow, and once you ve broken your duck you won't stress out about it. The only bit of advice I'd give is to arrive early, I find they're calling me to sub wait about 10 to 15 minutes before my actual appointment time, and often they call me in straight away, so I'm finished not long after my appointment time.
Now I've said that, it probably won't apply in your unit! But I've never been kept waiting, they obviously crack on at top speed, the next person is coming in as I walk out.
Beth, I think it's the new you which is going to surface, the old you has probably gone, but the new you will be stronger and maybe wiser in a way. You learn things from experiences like this, you learn about yourself but also other people.
I think this whole experience has made my husband and I closer, we were always good together, but he has been stronger through this than I thought he could be.