Wow what a day. The good thing is it is not cancer and it sounds more a "belts and braces" procedure xxx
Thank you Helena and Blueleyla
Still can't quite believe it's all over on the treatment side bar taking Tamoxifen for the next 5-10 years. I have felt quite emotional today over it but not resorted to a full out boohoo session yet. When I was talking to the oncologist on Monday at my clinical review I said about being ok 90% of the time with my mood and then the other 10% would be tearful and was I going mad? He said it is most likely to be the mood swings brought on by taking Tamoxifen and it should settle down if not medication was available.
In fact medication was available for pretty much everything that I raised regarding side effects after chemo - not so sure that I want to keep taking tablets for every little thing - because I have taken loads of tablets for this and that while on chemo. Never really been a pill popper except for the odd paracetemol - it's bad enough taking Tamoxifen!! lol!!
But when pushed about being cured - his response was we have done everything possible to stop it coming back by doing a mastectomy, chemotherapy, radiotherapy and hormone therapy. In doing so they have improved my odds up to 85-90% with chemo and radio contributing 6-7% each and given that I had multi focal tumours >10 and one sentinel node full of cancer - they were treating me to reduce the risk of it ever coming back again.
So moving forward - I will keep drinking lots of water and slathering lots of moisturiser on and doing lots of massage to to relieve my sore axilla and recon boob and hopefully keep lymphodema at bay. Once I've seen my GP and my HR Manager I will be re-joining the employed world hopefully on a phased return throughout May and back full time by June. I've not been able to get on a moving forward course yet and by the time I do - will most likely be back at work - might push for reasonable adjustments so I can attend.
I'll be around for some time yet to keep ringing the bells for everyone following us!!
Swampy congratulations on finishing your treatment. All the best for the future. Isn't it lovely to talk about the future.
What a day! Rads booked for 3pm .. review 315pm and then gynae at 415! Rads delayed (staff were great not their fault) so had rads at 4pm .. review rebooked for next week then ran to gynae department .. now need ovaries removed due to something showing and my mum passing due to ovarian cancer ... trying to delay this to allow my body to recover and to get back to work after so long away ... mixed feelings ... oh forgot to mention do NOT have ovarian cancer at this stage ... but my mind in a fog!
If it is anything like me, I still get fatigue now but it is generally on a day when I havent drunk enough and to be honest I know exactly when it is going to happen, shoulders get really heavy and the next minute I am asleep for about 10 mins then I am fine again.
I decided to push myself a bit after work today I have been out and pruned some ivy growing between us and our neighbour and turned the soil in the borders, bet I am going to know about that tonight xx
Well I have only just got home and you have beaten me to it congratulating you on finishing rads YAY so here are the ding dong bells again
DOnt forget to keep up the fluids and be aware of the fatigue which may well start to kick in next week.
So so pleased for you active treatment done and dusted
The hospital where I have to go is very busy and is being rebuilt at the moment so parking is limited and is on a one out one in basis, one gentleman today had finished his treatment and was back in the waiting room just as his son turned up after parking the car, tomorrow we are going to park on the seafront where the time limit is longer and it's only about 10 minutes to the hospital, in the grand scheme of things a brisk walk in the morning is nothing.
Ding Dong!! Ding Dong!!
Finally finished my rads!! Now to carry on cooking for a little while. I'm due back to my local clinic in 6 weeks to see the oncologist and then I need to start putting my head in work mode and plan for a phased return to work in May. Already booked in to see my GP next week to talk about sick/fit note/phased return so we'll see what she/he has to say.
Lots of Luck to all those still going through their rads - it will be over before you know it!!
Just a thought maryminder. Most hospitals give you reduced or free parking when you are having rads - have you checked this with your hospital? I just had to show them my schedule each day with my car reg and they put it into the system and just charged me £1 each visit.
(PS I know exactly what you mean about having an itch at the wrong moment- happened to me lots of times!) x
1 down 14 to go, appointment was at 10am finally got done at 11.15, lucky OH was with me he had to leave and put more money in the meter, fingers crossed it was just a one off blip.
The procedure itself was over quite quickly and why is it when you are told to keep still your nose starts to itch or you have an urgent need to move your legs
Fab to meat you too MrsOrange lol! I thought you were doing just fine.
I'm 3 down and starting to cook nicely, I have an itchy nipple and trying not to scratch!!!
Yay onwards and upwards now, although keep an eye on things for the next two weeks as you will continue to "cook" as they say. Make sure you carry on moisturising and keep up the fluid intake, give yourself plenty of time to rest as well.
I finished my rads today and I know I felt better once the treatment started. I was lucky re parking as the hospital has a reasonably large car park and anyone undergoing daily treatment gets a parking ticket which means that the first hour is free. I was never there longer than an hour so didn't have to pay. From memory Brighton is not the easiest place to find a space. Good luck
Thanks ladybowler, finished this afternoon and have booked a reflexology session for tomorrow that I am looking forward to.
Glad that part is over although pleased to say I haven't had any problems. Seeing the consultant on 24March but feeling more positive than I have for a long time particularly with all the positives that have been posted. Thanks for looking out for us all
1st rads tomorrow at 11am, OH is off for the next couple of weeks so he will be driving into Brighton and looking for parking , but for the final week will have to rely on public transport so fingers crossed no train strikes.
Will be glad to get started, seems to have been a long wait.
Good luck to you all
I am off to work,not sure what time your last, yay, session is today but wanted to say well done lady you have done it. Hope you are celebrating afterwards.
Those bells are ringing for you today xxxx
Mrsoragcat I'm at 4.30 tomorrow so might see you. I will be with my 4ft 10 mum and carrying a leather brown bag which has a sort of cut out sun design on it. If not tomorrow then might see you another day x
My breath holding was fine btw 😁 everyone was so nice and I didn't disgrace myself and cough or anything lol
Thanks, yes doing ok, only 2 more sessions to go! I am lucky as I haven't really felt more tired than usual although my boob does feel tender today. Mentioned it to the radiotherapist who said my skin look ok so nothing to worry about. My shoulders are beginning to ache so will be glad not to have to keep them above my head after Wednesday.
Totally agree with what others have said about Tamoxifen, although I am on Letrozole but read all the side effects and kept putting off taking them, however 6 weeks on am still feeling ok although I worry about every ache or pain in case it develops into more. Hope everyone else is still doing ok
Hi Jo, glad you're doing okay 😁 and 4 down yay! Nothing to report on the Tamoxifen front yet, long may it continue!!! 😎 I'm looking forward to getting started now tomorrow. Want to get it over with and get back to work (did I just say that about work? maybe I am experiencing some strange side effects??! Lol)
Hols were brilliant thanks, first time in weeks that I have felt normal. Had days where I didn't think about it at all. My new swimming cossy from Ameona is fantastic.
I must also mention my aqua knitted knocker that a wonderful lady from Knitted Knockers made for me before I went. It's perfect and comfortable and sat nicely in the pocketed bra bit. It dried out lovely ready for next day. For any ladies needing one if you Google knitted Knockers it will direct you to their website. You just tell them what size you need. My knocker arrived in a beautiful organza bag, totally made with love. It gave me so much confidence that I didn't need my sarong. What a service and it's free too, but if you are able to make a little donation then it helps with wool costs etc. They also knit normal knitted Knockers too (not for swimming). Wish I could knit, I'd join them! Maybe not too late to try? Mmmm?🤔
Better make some tea too and the cat is giving me pleading stares 😊
Take care everyone Hxxx
Hi mrsorangecat and everyone,
Well number 4 done and dusted only an hour behind today, I think the machines are a bit temperamental.
How was your holiday ? ☀️
Your braver than me I've put off starting my tamoxifen until after the rads, you'll have to let me know how you get on (fingers crossed all will go smoothly)😀
Any how got to get on with making dinner,
Hope everyone's well
Big hugs Jo x
Thanks Emily, hope it went ok today? Yes, I think you're right , I'm sure they would have let me know if I had to breath hold before treatment starts but stranger things have happened eh? Been timing myself with a stopwatch just in case! 20 seconds is doable but a bit stressful first time I bet. I'l look out for you tomorrow 😘.
Hi Emily ... 815 suits me well. We (my husband always comes) leave home at 7.10 and arrive about 745... my husband interacts with the men and I am happy waiting ... it is a lovely atmosphere at our hospital .. we miss bad traffic and can park easily .. plus we are early risers😀
Thanks Kimjane, OMG though I would have hated 8.15. I would have had to leave the house at 7am to miss the traffic but I suppose would get a parking space lol!
mrsorangecat, I will let you know what time I am tomorrow when I get my times today 😄 I don;t think you will be breath holding if you didn;t do it in your CT scan. It depends on the position of the tumour I think. Not really sure though.
Hi Helena 😂 please not spots as well Ha!! I have no time for zit squeezing what with all the chin hair plucking!!
Yes I decided to go with 4pm to take the tablet, I know that's a random time but when I'm back at work that's my finishing time and I go to the gym then so if I have any flushes Il be on a treadmill and people will just think blimey she's working hard!! Well that's my half baked theory anyway!
Such a shame that you're getting flushes now and didn't during Meno, isn't that just typical! Yes, I shouldnt grumble as the tablet is supposed to be a wonder drug....
I'm off to beddybize as got to see GP in morning, I have a list of questions and a 10 minute slot, Il have to talk very very quickly. Night all 😘xxx
Hi KimJane, thank you for saying that about the breath holding, I'm sure that will have reassured Emily and me too if I do have to do it 😊 it's always scary doing things the first time isn't it? Nice to hear you've been lucky with appointment times too. Soon be over eh? Xxx
Oh you are so so funny, it will probably turn out to be a zit!!
You need now to take them at the same time every day. I take mine in the mornings as it suits me that way because I can usually remember to take it with my breakfast 🙂
Oh those days are well and truely over for me as I am nearly 59, so I have the joy of having sailed through the menopause which I started at 52 and wham!! now I am getting them again only more noticable for me this time in terms of the flushs, but hey ho at least this little tablet is keeping me safe 🙂 Oh the joys
Hi Emily, yes I'm at Coventry hospital, UHCW too 😁 I start on Tuesday tho, 4pm so I wonder if I'm breath holding too? We discussed it at my planning meeting briefly but I didn't get a call about it. I am a left sider, have to see.
Best of luck for tomorrow. The breath holding will be ok I'm sure as they monitor you closely and stop if you need to breathe, i'v been that blinking anxious of late I find myself holding my breath a lot naturally!
Other ladies on here have said it's been ok so please don't worry Hun.
I don't have to travel as far as you as I live in Rugby. The parking is rubbish isn't it? By the time mum's found a space I'm hoping I'll be in and out! 😂 I'm getting signed off too for a month, I think it will be less stressful that way. Hope to see you there. I'll carry a mustard coloured handbag lol.
Hi Emily ... I am 10/19 into my rads and I have to breathe hold. Like you I was really worried about it but it really is no problem ... good luck x
just to mention I have been lucky and although delayed starting for a few days because of machine breakdown, so far I always go in on time .... most of my appointments are 8.15am which is brilliant!
Thought I would join you, I start rads tomorrow, I'm at Coventry hospital, anyone else? I live in Stratford so I have a 40 minute drive (and an hour to park lol). I was going to work though it but changed my mind so Ive been signed off for the month.
My appointments not until 4.15 which is a pain and she said most of mine are late its becasue I need a longer session as I'm breath holding. I'm panicking about that now, I have practiced, but what if I am doing it wrong! I did 20 secs at the planning appointment but now that seems harder than I thought!
Glad it's not just me then Mrsorangecat! I delayed till after my rads before going onto the dreaded hormones- anastrozole-kept looking at the packet and thinking - "no, not till rads are over", and took the first one on the last day of rads. It's been 3 and a half weeks now and I keep looking at my hair and chin to see if there is less hair on the one and more on the other! Needless to say it is far too early to notice any difference, but it DOES seem like a big step when you take the first of what will be at least 5 years worth of a medication, especially when you read the potential side-effects on the packet. Still, if it stops it coming back......
Good luck with it all. X
Thanks Helena 😘right I've taken it 🤔now I've no idea why I am sat looking at the clock. I think I'm waiting to see how long it will take for me to grow another head or something! Omg!! 😂
I haven't had a period since stopping the mini pill back in October when diagnosed so maybe I am through it or definitely into meno? I don't know? Felt rough for years with period pains, PMT etc but I'm only 44 so maybe it's the shock of diagnosis, coming off the pill, mastectomy etc delaying it. Mum had hers at 30 though so maybe I am an early bird? I started my periods at 9 as well. As I wasn't sure where I was at the Onc gave me Tamoxifen.
I'll try not to think about it now and do something nice!
I'm having 15 sessions of rads Xx
Sorry but I was smiling when I read your comment about looking at the packet of tamoxifen because I was "that" woman back in November for a week!! Then it was PollyP who I was talking to on here who said she was the same but had just bitten the bullet and taken her first one, so I thought oh I well I just need to get on with this. I am post menopausal, so far I have had a lovely! hot flush about an hour and a half after I take it, I did suffer with constipation for a while but that has now sorted itself out, fruit & fibre helped!! I have a fuzzy head sometimes which I hadnt put down to the tam but someone else mentioned they had and it then made sense, but to be honest that is it.
Radiotherapy itself does not "hurt", obviously your breast over the course of the treatment can get hotter which can be a bit uncomfortable. Oh yes moisturise 2/3 times a day but never less than 2 hours before your rad session, I used to take the cream with me to put on immediately when i was getting dressed.
How many sessions are you having?
i have 3 more sessions to go and so far my appointments have never been more than 20 minutes
late and that was only on one occasion. My hospital seems to be very organised. It must be very frustrating to wait hours and the. Be in and out in 10 minutes. Fingers crossed for the next few days
That was what was the worst part of all the rads for me, virtually every session I had was at least 40 minutes delayed and on two occasions 2.5 hours and 1.5 hours, which when you are sitting round is very frustrating, especially when they do not come out and explain why there is a delay.
Good to hear that you have your lotion all in place and hopefully using it regularly that will help loads
Just abit of an update had my first session on Wednesday, I didn't post as I was delayed by 2 hours and by the time I got home and had dinner I was too exhausted. The Thursday appointment was behind also as the machine broke down but finally on Friday I arrived and went in straight away (which was nice) 😀
I have have also bought E45 intense lotion ( which hasn't got any coconut in must of got mixed up before when I was looking at Soooo many creams to try and find one due to my allergies ) and may start using this instead as the Nivea lotion that I'm using at the mo and keep the the Aloe Vera gel that I've got chilling in the fridge for the hotter days.
Hows everyone else doing?
Big hugs Jo x