Okay, okay, I was only joking!! I was dreading 50 but actually it's not so bad.
Feeling more positive today, like I've turned a corner. This bc is so unpredictable.
I went to see the skin care nurse this morning who was lovely. As well as giving me hydrocortisone cream and nu-gel, she also told me to take some time off work, to stop trying to cope with everything and allow myself some me-time. She talked about the emotional catch-up that happens sometimes at the end of treatment, and also the body needing to recover from radiotherapy. I felt relieved that I was being told to take time off and I saw my GP later and he has signed me off work for 2 weeks. Immediately I felt a weight lift from my shoulders - I won't have to pretend I'm fine any more. When I go back I'll be good and strong and ready.
If anyone is browsing and looking at this - learn from my experience and don't feel guilty taking time off work. Take it if you need it.
Thanks forum ladies for your support,
Ha hem! Excuse me - over the hill at 50? Don't be ridiculous - we're in our prime (I'm 51)! Young enough to have everything working (even if it takes a while!) and old enough to know what to do with it. Think positive!
Similar to your yoga, I do Pilates and find it very helpful. I have regular lessons and practice the exercises every day, it's been a great help in getting full movement back again.
Thanks Libby, miscally and Sarah. I feel better for reading your replies. Just to know that other people understand and have been there too does help.
You're right - we are each individuals and need to do what is right for ourselves to get well and strong. And I need to acknowledge to myself that I've had all this treatment and it takes it out of a body (especially now I'm over the hill at 50!). I know I'm doing too much - I'm not very good at doing anything by halves - it's either full-on or not at all with me. Maybe I'll ask if I can do shorter days till half term and I will stop feeling guilty about putting me first for a while.
On a positive note, I went to my first ever yoga class tonight and it was sooo good to be made to relax! I'm going back next week.
Thank you again for your kind words,
You're definitely not being a wuss. Your body is doing a lot of mending with the blister and soreness, so it's working really hard to repair itself - and that's tiring. Are you perhaps doing too much, thinking you should be back to nearly "normal". My GP has said to me several times, just because other people have worse to cope with doesn't mean you should feel guilty at doing what YOU need to do to recover from it all. How can you say nothing major is wrong when you've had surgery, radiotherapy and are now on hormone therapy? Be kind to yourself.
So sorry you are feeling down today. it is horrid how it creeps up on you, just when you think you are feeling better! Could you work shorter days for a while to let yourself in gently?
I have said on another thread that I feel guilty sometimes that I am not feeling 'lucky' and that I am down about the whole BC thing when I had an early cancer picked up in time for 'just' a lumpectomy, rads and Tamoxifen. My daughter says she cannot understand why anyone with any form or stage of cancer should feel lucky!
As you say others have so much more to cope with - but and it is a big but, we are all here for the same reason and need support. So lots of hugs and hope you feel better soon.
Sussex girl you are not being a wimp or a wuss Oh those tears get us all despite our individual treatments we all have BC and the fall out is a b****r I was wondering what sort of exercises Starfish was suggesting for lymphoedema? Had WLE and ANC (May) got onto exercises v. quickly (BCC sheet from hosp physio)then re-excision (June)for better margins all going well THEN rads and all the sensations flared up again in breast tissue, and quite took me by surprise had not stopped doing the exercises. Skin has been OK but now 5 weeks post rads have real tightening over upper breast area and down into axilla and then into arm. This gets worse during the day until the point I think analgesia is required but so fed up of all the meds do not take anything. Am I expecting too much too soon? Have been so concerned my BCN referred me to a physio. Any comments from your very varied experience would be welcome Jackie xx
Had a day or two away from the forum and have had a quite a bit of catch up to read.
It's interesting how the side effects come on much later after rads for some people than others. Makes it a big 'wait and see' game really. I've now got an appointment at the skin clinic at the Cancer Centre, and though I think the weepy blister is getting a bit better on it's own some dry itchy skin has appeared under my boob and also under my arm.
I had 2 days off work and went back today thinking all was well,as I didn't feel too tired and tho my breast is sore it's manageable. Anyway, I ended up gently crying in the car between visits (I visit different schools as part of my job)without knowing why! After my last visit I just came back home instead of going back to base to write it all up. I'm not really tired, but I'm not really normal me either. Can't work it out in my head. I feel like I should be able to carry on normally - my WLE, rads and tamoxifen are nothing compared to what some ladies on here are coping with. I feel emotional and tearful when nothing major is really wrong and somehow feel that I should be able to put it to one side during the day. I suppose some of this is due to the tamoxifen too? Does that make us weepy?
I don't know what to do for the best regarding work. Whether to take more time off till I stop feeling weepy and and fragile (could be forever couldn't it!), or whether to 'tough it out' and carry on.
Feeling like a bit of a silly wuss today. Any thoughts and ideas welcome.
No offence taken! And anyway I'm one of those who hasn't worked at all during rads, so as I said earlier in this thread, that might be why I'm not getting the extreme tiredness that many people suffer. Basically I've got s*d all to do except keep an eye on the builders ripping our house apart and concentrate on getting fit enough to have the 2nd lot of surgery.
Reading the posts here gives a pretty dire picture of what some people go through, so in some ways I felt it might be helpful to anyone approaching rads to know that it's not always that bad - although it might be. My Mum had conventional rads a few years ago and got nothing more than a light sunburn, even though she's a redhead, so maybe it's an inherited trait!
Apparently IMRT gives a varying dose of radiation throughout the breast, giving a higher dose where it's most needed at the site of the tumour and less elsewhere, hence (hopefully) less side effects. They work out the required dose from the 3D images taken at the planning session and map out a 3D dose pattern accordingly. The reason most of us don't get it in the UK is not shortage of hardware (the linear accelerator machines which give us the radiotherapy) since most hospitals already have the machines which can do it, but a shortage of physicists to plan the dosage and trained radiographers to apply it. I'm sure someone will correct me if I've got the technical bits wrong.
Oh Sarah so sorry if I sounded abit off don't mean to offend but really get irritated with the implication that those who take time off are ...... well you know. For those who have had a 'tolerable' experience of rads it really cannot give you any idea of what others may be going through.
I so hope you are able to continue to progress and wish you loads of luck and really hope it doesnt ' bite you in the bum' in the coming weeks , but if it does we're here for you cant do much practically but we'll listen to you have a moan , weep or get angry and even offer abit of advice.
Now tell us more about this new type of rads - do like to be well informed .......for the next time God forbid!
Yep, entirely possible that it will still turn round and bite me on the bum! There's plenty of time for that yet. I'm just hoping that because I had the Intensity Modulated version of radiotherapy that I will get less side effects - that's supposed to be the main benefit of that type of treatment. I didn't even know I was on that regime until one week into the three weeks of rads. In other countries a much higher % of breast cancer patients get this type of treatment (where have we heard that before). But even with the IMRT some facts remain the same - lots of cells being killed off, including healthy ones, scarring developing in the process, and lots of energy being needed to build new healthy cells.
Hi Cheshire Cheese - I'm really glad your experience has so far been less challenging than for some - What took me by suprise was the delay - mine kicked in six weeks after - and there was me thinking I was home and clear - abit of pink ,abit of a rash and abit of heat - very 'doable ' just as the Radiologist predicted ..... they just forget to tell you of the potential for the rest.
This site was invaluable for me when the 'real stuff' kicked in. There are many girls on this site who have had little trouble from rads and have worked all the way through and they have shared their valuable experiences too but if your breast reacts differently to those girls it's really important that through this site you learn that it's ok and your just unlucky and there are others who have or are going through the same as you ....it's comforting to know your not alone. Whilst it's not nice in anyway, shape or form it's doable. As was said initially Rads is very individual thats why our plans vary according to our individual cancers.
For the girls who suffer fatigue / blistering and taking time off it's really important they are not made to feel inadequate or wimpy or not getting on with their lives.
Didn't mean to imply that I think the rads are all done and dusted for me, I only meant the short term effects seem to be not too bad. As you have pointed out, there will be other effects going on in there for years to come. I've been told that the shrinking can carry on for up to 10 years.
The effects of radiotherapy are ongoing. Even after they have finished and everything looks normal on the outside there is scarring inside the body. I was told the effects can last one to two years afterwards. Indeed as someone who had a mastectomy I still nearly two years later get a stabbing pain on the site if I reach or move awkwardly. For that reason it is also very important to keep doing the lymphoedema exercises for several years afterwards and ideally forever regardless of whether you have lymphoedema or not as the arm can tighten up because of the effects of radiotherapy and the operation. Hope this helps.
I finished rads 8 days ago and the effects were at peak about 4 days after the last treatment, when I was a bit pink and warm. The most noticeable effect was the tissue stiffening and tightening up a lot, which I overcame with more and more exercises as required. I didn't suffer any tiredness, but didn't attempt to go to work during rads since it was taking half a day each time. I've been going for long walks most days to try and get fitter and help my recovery along. My boob is now a gentle tanned colour, has cooled down to almost normal, and no signs of peeling, blistering, etc. So some people can be lucky, fingers crossed I seem to be one of them (so far).
Naturally enough, the majority of the ladies posting on these forums tend to be the ones having a not so good time with the treatment, whilst the ones who sailed through it are probably back to work or whatever, and getting on with their lives. So perhaps it's possible to get a distorted picture of the proportion of those suffering bad side effects vs those who don't? Just a thought.
I think that for me the 'waves' of tiredness really took me by surprise. I did keep my fluids up as advised and that really helped but I didn't work during rads as the trip was an hour each way plus battling against extreme weather conditions and then the wait at the other end for treatment was often over running . So that left about 2.5 hours at work - it really would have been too disruptive for them so took the time off.
Equally after rads the burns , blistering and weeping was pretty painful so a bra was out the question , so as I didn't want to frighten the population with my ample G cup appendages , and equally fearful of knocks and infections ( I worked in a special school) I stayed off work - I initially felt bad about that but soon realised that it really was the most sensible thing to do.
Weeping is a problem its not nice and very sore go back to GP and get some advice although this can be patchy - just try and keep it clean and dry.
Rads seems to affect all areas, energy, taste ( I developed a passion for honey - I HATED HONEY - but not back then) emotions ,
preference and the inability to make choices ...... oh yes tolerance I had none , absolutely none........ but nobody tells you about this . Some lucky ladies sail through but for others it is all a bit of a challenge but we get through ....eventually . Rest when you can and pamper yourselves , you deserve it.
PS In terms of tiredness, have others found that it seems to come and go? I think I'd assumed it get worse then better (if that makes sense).
PPS Not sure what I am still doing up at midnight!
I finished rads last Tuesday too. My skin has been horrendously itchy and covered in tiny little red spots, though both symptoms seem to have abated in the last day or so.
The tiredness (fatigue really) seems to come in waves - one day I'm ok and the next I feel shattered.
I've not been working during treatment (self-employed and don't actually know if I have a job to return to, which is a bit stressful). I think it's helped to be able to rest when I've needed to but I have also missed the distraction of work.
Hope your skin and the tiredness are better soon, Susie.
Thanks for asking this question - I was thinking the same. Reassuring to read the answers too.
I finished rads last Tuesday, but over this weekend got blistering around my nipple and weeping skin. I feel washed out too. I think this is because I took no time off work during rads (they were all at the end of the day).
I've been wondering if other people took time off work? I didn't have chemo (just WLE) and felt ok mostly during the rads - though a bit weepy and irritable in the last few days, so just kept going! Am now wondering if I should have done half days or something. Anyway, I'm taking time off today.
Another question - does the tissue around the scar ever get back to being soft? I have a real bit of firm breast tissue at one end of my scar (inside) about the size of a 2p.
I'll put this question on the 'surgery' or 'after treatment' forum too.
Hi Woodentop - the affects of rads can be abit unpredictable as it's very individual. For some lucky ones its 'a few weeks' for others it can drag on and it's not unheard of for 6/8 /12 weeks in to still have soreness and burns but the happy note is it does clear up and when it does it a real milestone for you .... as is getting back into a bra but don't rush that as your skin will still be fragil a few hours at first and a slow build up to all day.
Be positive and just try and roll with what ever your body dishes out - try not to have any expectations because if you start to give yourself a time schedule to be o.k you'll get yourself in a lather and my pet it does make the whole recovery so much harder. Good luck .
4mths post rads I am definately getting back to normal - swelling has reduced significantly, redness too. I have even (finally) been able to go back to wearing a normal bra in the last couple of weeks. The breast is still quite firm but isn't painful anymore. I do get the occasional stabbing pain but I am told this is normal. My surgical scars, which were aggravated by the rads, have settled down and virtually disappeared now as well. I continued to use aqueous cream for several wks after rads as wello and I think this helped my skin recover.
the radiotherapy is ongoing so even after treatment ends it still has effects on your breast... if you experience redness and irritation that usually settles down a few weeks after treatment ends but you may experience things like stabbing sharp pains through the breast intermittently and your breast may shrink or change shape of the next couple of years.... after a round 2 years it shouldnt change any further.
The efects of radiotherapy can last a few weeks past treatment. My skin, which was okay during radiotherapy only broke down two weeks post-treatment. The feeling of fatigue also went on for weeks too. This does NOT mean you will be affected. Watch out for symptoms but don't assume you'll have them. Be kind to yourself.
Best of luck,
Almost finsihed my rads only have 2/5 boosts left, just wondering how long before things settle down and start to return to "normal"???x