Thanks daisyleaf, you’ll be a bit ahead of me so maybe you can let me know what to expect!
Super Tutor I have my fingers crossed for you too!
Hi All,
I am new to this board - thought I could get through this on my own, but now feeling very low. I am 46, found a lump last August and was diagnosed on 6th October. The postal strike caused delays in appointments. Had WLE and SNB removing 3 nodes on 5th November, then 3 days later removal of a large haematoma followed by nearly a week in hospital with daily platelet transfusions and IV antibiotics. Clear margins and no lymph node involvement so next step was to be hormone therapy and radiotherapy.
I went back to work at the end of November and started on Tamoxifen just before Christmas after a spell on Arimidex by mistake. Having lots of side effects - night sweats, aching joints, rashes and mood swings and feeling really weary.
Finally started rads in Guildford last Tuesday for 15 sessions and looking for friends at the same stage as me.
E x
Hi E and everyone else
You have had to wait what seems like a an awful long time from original diagnosis to starting rad treatment haven’t you I really feel for you having this hanging over you for so long.
I had a haematoma following my first wle but was only in hospital for 2 days. I then had a third op to get clear margins - this was back on the 15th Dec, and I am now clear, I start my rad treatment on the 18th Feb for 3 weeks. I’m still signed off work as my Macmillan nurse doesn’t advocate trying to go back to work until everything has finished and to be honest I wouldn’t be able to concentrate at work as its a really busy office and I fully admit that my brain isn’t functioning 100% at the moment!! I’m lucky that my employers have been very sympathetic and don’t expect me back until I am fit.
I saw a breast care councillor today to ‘talk’ things through, she seems to think that I am coping okay and most of the time I feel as though I am but I do get some ‘black’ days and nights (why are they always at 2.00am ??).
Its snowing here in Kent today and more is expected later on in the week, but I tell myself that Spring is just around the corner and it WILL be a good year.
Love to all of you
px
Hi Daisyleaf
You and I are starting our treatment almost on the same day so we’ll have to compare rad threatments and side effects (if any)
Let me know how you get on after the 19th if you get a chance?
Philllippa x
hi all
i have just finished 25 rads and am still signed off work! was hoping to get back 2 days a week in march and its all planned but to be honest the blisters are so sore and the open wounds hurt so much its hard to do the most simple things never mind drive my car and go to work! good luck to all of you planning to work i think ur very brave as i slept so much that i didnt do anything for weeks lol!
Hi trally
I’m with you on this one we’re all different but I couldn’t cope with work at the moment, if I lived close to my work maybe I could manage a few hours but my employers won’t let me do that anyway. So to be honest I’m going to make the most of the rest and listen to my body and I’m only going to go back when I feel that I am ready to do it.
Take care
x
I have had 21 of 25 zaps and am working bits on the laptop whilst in the hotel (too far to travel each day), now the accountant is hasstling me to go back to work next week! I’ve told him today that I dont think its a good idea, I am so tired, just walking half a mile knackers me for a while.
The treatment seems to have restarted the hot flushes which had died down but they are now back with a vengence as are the night sweats. No fun being a woman at times.
x
Hi all,
I’m a newcomer to the forum and am due to start 3 wks of radiotherapy treatment on 10 Feb at Clatterbridge. It’s going to take me a good hour’s drive there and back every day, so I’m a bit concerned about how tired I might get, but guess I’ll just have to see how it goes. Will let you know.
I found a small lump on 08 Nov, was diagnosed on 20 Nov and had a lumpectomy on 08 Dec. No lymph nodes were affected. I was diagnosed with intracystic papillary carcinoma, which is quite a rare type but good from the point of view that it’s localised, slow-growing and non-invasive.
Just hope we don’t get any more snow - first treatment time is 9.15am!
Best wishes
Becky x
Hi Christine
Nice to see you and your wee bike.LOL.
Once you finish the rads they remain active for several weeks so the tiredness will continue and could indeed worsen. Stick to your guns and don’t go near work for at least a few weeks.
Since starting Arimidex 2 weeks ago my flushes/night sweats have definitely worsened. Duvet off, duvet on, duvet off… so broken sleep too. Yaaaaaawwwwnnnnnnnnnn.
Hope your skin is still holding up. Only 4 more rads and then you’ll be home.
Thinking about seeing the GP this week as my sick certificate up next week. Right now don’t feel quite ready to cope with my demanding job. Thankfully everyone there keep telling me not to come back until I’m really ready.
Take care
Alison.x
Hi Becky
Sorry you have had to come here but you will find lots of support.
I was having my lumpectomy on the day you were diagnosed. Thankfully they found mine early so was small and grade 1. My nodes were also clear. Had 3 weeks of rads which I finished 2 weeks ago today.
I would say that you should take every day as it comes. Hopefully you’ll be fine with the travelling . Have someone on standby if possible just incase you do find it a problem. The actual treatment only takes a few minutes and most of the time is spent in the waiting area. Take a good book.
Also if you haven’t already, start applying aqueous cream to your breast at least a couple of times a day which helps the skin during treatment, and drink plenty.
Good luck and let us know how you’re getting on.
Alison.x
Hi Alison,
Many thanks for the advice. I’ve got a couple of friends on standby, and my OH will come with me some days as well, so will be good not to have to do the driving every day. I started using some aqueous cream in the New Year when I was told I’d be having rads, but will step up the usage from now onwards. I went to our local library on Saturday, so am well stocked up on reading books!
How did you feel at the end of your rads and what’s next for you now?
Take care,
Becky x
Hi Becky
Read your comment re aqueous cream. I start my rads on 22nd Feb, nobody has mentioned this cream to me (?!) should it be something I use now or when I start treatment?
Helen
Hi Helen
I started using aqueous cream a couple of weeks before treatment and I’m still using it 2 weeks after treatment finished.It will help stop the skin from drying.You can buy a large pot really cheaply. Good luck with your rads. How many do you have?
Becky, Still a bit tired but thats to be expected. Started Arimidex the day after I finished rads and apart from increased flushes/night sweats, not finding it too bad. Have an appointment with Onc next month and expect him to arrange a bone scan as loss of bone density can be a side effect of the medication.
Take care ladies
Alison.x
Hi everyone
at hosp for pre-rads scan tomorrow - will be quite pleased to get it started.
Tamoxifen is driving me nuts - was on it from 1997- 2002 and it didn’t cause any SEs then but this time I am having a bit of a mad old time! was already having flushes and night sweats from chemo but this is just silly - melting! lol
hope its going well for those who have started…
monica xx
Hi All
I bought a large pot of aqueous cream from Boots I asked at the pharmacy counter as everything else on the shelves had lanolin in it and I was told not to use that. The pharmacist gave me a pot of Boots own aqueous cream (no lanolin) for £3.99. I also have started using it this week and my rads don’t start until the 18th.
Phillippa x
Hi All
Thanks for the help with the cream - off to Boots tomorrow.
Had to see Onc today as boob very ‘lumpy’. He’s drained 2 huge cysts (had one drained in Jan). I had a WLE in Nov, no clear margins so another one and SNB in Dec. Clear margins and lymph nodes clear, never had cysts before. Is this normal? Never had cysts before all this started and can’t stand the stress of feeling the lumps and not knowing etc etc. He says it’s coincidence and will settle down - ye Gods when will this ever end. Feel really wobbly today but it’s good to know there are people out there who understand.
H
Hello
had scan today - they recommend aqueous cream so going to start it tomorrow.
Scan was no probs, had dots tattooed on - just felt like a scratch but I did bleed a bit.
Forgot I had been marked all over with felt markers and popped into sainsbury’s for some fruit with scribblings all over chest (credibility gone for a burton!)
love to all
monica x
Hi Phillipa and everyone else,
Thank you for your response to my post. I hope you don’t get hit too hard with the snow again in Kent this week. That was one of my main worries with the travelling to and from hospital. I am only 15 miles from the hospital, but the journey still takes at least an hour because of the traffic and it was impossible to get there when we had the bad snow here a few weeks ago.
I am interested in other peoples’ experience of getting back to work after radiotherapy. I went back quite quickly after surgery and now I’m wondering if it was too soon. I wanted to get back to normal as soon as possible, but now I’m feeling as though I haven’t acknowledged what has happened to me and everyone else around has forgotten too. I am struggling to deal with some things and people at work. I’ve become a lot less tolerant somehow and a lot more stroppy - as if I haven’t got time to waste and I can’t put up with people not doing things right.
Maybe I should start another thread on this since its not really radiotherapy specific. As far as that is concerned, day 5 yesterday and I am starting to get a bit pink. The aqueous cream isn’t doing it for my nipple so they’ve given me some special gel to keep in the fridge and apply whenever needed.
E x
Hi Elsk and ladies all
After my chat with the councilor on Monday I am convinced that I have done the right thing not going back to work until all this is over, I’m lucky in that I am on full pay so no financial worries, which I know isn’t the case for everyone. The councillor asked me what my first thought was on being diagnosed and I said ‘denial’ and that has been the constant thought all the way through this and still is as I keep thinking that one day I will wake up and its all been a bad dream. She told me that we have to allow ourselves to heal both physically and mentally and that can takes weeks/months even years as we all deal with things differently.
I know that if I had gone back to work I would have had lots of sympathy from friends and colleagues but like all employers once you are there you are expected to work! The two times that I have been into work since all this started I was told ‘oh don’t you look well’ and ‘no one would think you have had cancer’ - please pay special attention to the word ‘had’!! Because I look okay it was assumed that I AM okay. Didn’t seem to matter that I was going to have radiotherapy treatment as that was some how assumed to be the EASY option as I wasn’t having chemo!!!
I guess that none of us go through this experience without changing in some way, maybe we do become less tolerant of others, I know even now if someone says ‘oh I don’t feel well I have a cold coming’ my first thought is 'oh for goodness sake its only a cold! And when I hear on the radio like this morning that football fans are ‘distraught’ because their team might go into administration I also feel incredibly angry that something so paltry as a football team can make someone ‘distraught’! I know I wasn’t like this before so I have changed and I do’t know that its for the better.
Don’t change forum links Elsk unless you really want to - we’re all in the same boat with the same thoughts and feelings.
Sorry for the long rant ladies - guess thats how I’m feeling today. And it is snowing in Kent…it’s b****y freezing!
Phillippa x
Hello
I couldn’t agree more re going back to work - if the thought fills you with delight then thats lovely, but most of us have an awful lot to get our heads around and a fair bit to get our bodies around.
I have a bit of experience - first had bc in 1997 aged 38 - ‘only’ (!!) needed a mastectomy and tamoxifen and felt guilty about staying off longer. Everyone at work thought I was doing marvellously and I didn’t want to disappoint them. When I got back I had new work dumped on me from day one and was made responsible for areas I hadn’t worked in before, with the result that I was off with stress within a couple of weeks. People mean well, but they don’t get it, unless they’ve experienced it.
I feel strongly that its worth fighting the instinct to do what everyone else sees as the best thing, and ask yourself what you really want and need. I am getting a bit of very sweet and kind pressure about going back, but am working on myself to resist it!
Good luck everyone!
ps - next rads appt (planning) put off until 24th Feb as they ‘got all there planning wrong’. mystifying…
monica xx