I have loads of tatoos and they don’t go into the bone! If the skin is tight over a bone it may be tender. Funny what they tell you xx
Hello everyone
sorry I haven’t posted for a while - lots of rather stressy things going on lately aside from the BC.
Had my last chemo on Wednesday (yay), and just back from my Chemo planning CT scan and tattoos. Feeling tearful today for some reason - maybe because I was a bit anxious about the tattoos etc. All done now, and really wasn’t that bad, but am still tearful. Just one of those days I guess.
I was offered a choice of traditional ink (1 jab) or ultraviolet tattoos (5 jabs), & opted for ultraviolet for the centre (possibly visible one) & ink for either side where it’s unlikely to be seen. For me, each ‘jab’ felt similar painwise to the 'sharp scratch you have for bloodtests etc. So the ultraviolet one is 5 of those in quick succession - but it was over in half a minute. We have all probably coped with far worse already.
love & hugs to all
Karen x
Hi everyone,
great to see that we are all moving on to the next stage of our treatment and coping reasonably well - Chemo I think is the toughest to get through…
as for me, I’m now almost a month post my last Chemo and the se’s have subsided ? My hair is looking good (I was lucky that the coldcapping worked), although it is a lot thinner and has changed colour and texture (am now a silvery blonde) my hairdresser has been wonderful. I actually went for a mani/pedi this morning (minus the massage bit) and it felt good to be ‘normal’. When can we have the massage bit - anyone know?
i have my pre surgery appointment tomorrow, followed by my second surgery next week. Am a little apprehensive, but my Consultant tells me that there is nothing to worry about and that he just wants to take out a little bit more tissue where my lump was as he wasn’t happy with ‘the margin’ he removed last time. At the moment I have not been told when radio will start, but am assuming that it will be once I’ve recovered from this surgery.
hugs to everyone,
sueB
xxx
Hi swampy, thanks for the advice, well day 12 and I’m bk in hospital, I’ve a bit of a cold and expected to be neutropenic but my levels are too high thus time lol, 33 so waiting for liver tests now. Deffo ready for thus all to be done with!
Hi everyone!
Congratulations Miss.mc and Auntyjulie on finishing your last chemotherapy, but sorry to hear you are back in hospital again Auntiejulie. Hope you are back home soon and feeling better. At least you won’t have to face this again now you have had the last one.
Congratulations Swampy1901 as well on finishing your radiotherapy - you beat me!!! Although it is frustrating that you are waiting for your hair, eyebrows and eyelashes to grow back, they will eventually, and you will probably see the first signs soon. I hope you get some answers to the problems with chills and neuropathy as well.
I haven’t been around for a while because I was on holiday last week. We came back on Saturday and I started radiotherapy yesterday. It wasn’t delayed because of the holiday - we decided to fit the holiday in last week because the radiotherapy was so late and otherwise we wouldn’t get away until after Easter.
They were very slow at organising the radiotherapy after my surgery so I’m behind some of you lot! I also had a last minute wobble about having it, which didn’t help, but on the end I decided to go ahead as planned.
Return to work may not be straightforward if you still have radiotherapy to go. I wanted to go back just before radiotherapy and work through it, but my employer insisted on an interview with an OH doctor first. She wouldn’t sign me back on as being fit to work if I decided to have radiotherapy, because there is too much uncertainty about how it will affect me. I will have to go and see her again once it is finished to be reassessed before I can go back. This is all very frustrating, but at least I am getting half pay in the meantime so I shouldn’t complain too much.
If you are still about to have radiotherapy planning, it is nothing to worry about - the CT scan is a lot easier than a MRI scan, and I hardly felt the tattoos. It seems Swampy was unlucky, most people don’t have much pain. Mine were no worse than the Herceptin injections. I’ve had all black ink ones (wasn’t given a choice of types, colours or designs, lol). The middle one is more prominent than I’d like, having been told I would ‘hardly notice.’ It looks like a large blackhead! From earlier posts I see that Sus12 and Optimissy have had similar issues. I am not bothered about the others because you can’t see them.
By the way, there’s a March 2017 Radiotherapy thread if you will be starting soon and want to join in.
Hope you had a good holiday Old Dawn. Congrats Swampy on finishing your radiotherapy and also to everyone who has finished their chemo! It’s my first proper radiotherapy session tomorrow and I’m slightly anxious about the whole thing because of all the possible se’s as concerned about the possible heart / lungs issues and risk of lymphoedema yet again but I know I need to have it and will just have to try and put any of that out of my mind! I’ve def had a few wobbles about having it at all but resigned to it now. Going to ask about possible laser to sort the not “pinpoint” but more like thick marker pen tattoo on my breast bone too!
Finally got to a LGFBetter day yesterday after having to miss 2 as too soon after my chemo sessions and not up to it or the hour to get there. It was good and good to meet up with a few other ladies as I’ve felt quite isolated bc wise. Friends and family are great but it’s lovely to meet up with others in the same position and have a chat about stuff and a laugh too :). The funniest bit was when one of the young beauty volunteers got to the mascara bit explaining how to bend your brush and how to apply it and we all stated laughing as none of us had any eyelashes to put mascara onto :D. Laughter is def the best medicine :). I guess it’s good we could laugh together about the things that sometimes make us just want to cry. We got a nice free bag of makeup goodies to try out and take home.
Just a question…I’m having rads to 3 areas…breast and under left arm I was expecting but they’re doing the ‘Supaclavical Fossa’ ( I expect I’ve spelt that wrong!) area as well I realised. Has / is anyone else having it done there as well? I had all the lymph nodes removed in my left armpit so expected it under my arm as well but not sure why they’re doing that too. Will have to ask when I get there!
Last 3 weeks of having stuff done to me. Will be so happy when the rads are over.
Big hugs to everyone.
Sue F xx
Thanks Sus12, we had a very good holiday (and my wig only came off twice!). Hope your first radiotherapy goes well or went well if you have already had it when you read this.
If you are concerned about effects on heart and lungs and why you need the boosters, see if you can arrange to talk to a radiographer about it. I had a briefing with a radiographer before I started, and he explained how they will shield my heart, and about skin care, which was reassuring. But I am still worried about some of the other possible SEs and about the boosters.
I am supposed to be having 8 boosters to the tumour site after the standard 15 to the whole breast, but I don’t fully understand why they want me to have so many. The radiographer has arranged an appointment with the oncologist before they are due to start so hopefully I will get some answers. I wish he had explained more clearly at the beginning though, because if he had there would have been no need for this, and I probably wouldn’t have had the last minute wobble. I have found the first couple of radiotherapy sessions a bit uncomfortable because I have had to lie still with my arms above my head for what seemed like ages. They are taking reference pictures before the radiotherapy the first three times, so it takes longer than usual. I was told this is ‘protocol’ to make sure I am in the right position each time. I don’t think I could have coped with it if I hadn’t been doing the post surgery exercises.
I am at the hospital now waiting for number 3 - they should get easier after this one!
Hi Lou, we didn’t go too far, only to Somerset, because I didn’t want to overdo things. I was fine though, no major problems with fatigue and able to get out and do short walks of two or three miles.
I am now 3 months post chemotherapy (last infusion on 13 December) and 2 months post surgery (on 19 January). Have been doing the post surgery exercises 4 times a day and aerobic exercises to get fit again, and it has helped a lot.
Truey - we get (hardly audible) music here at New Cross Wolverhampton, and no pictures. I don’t have to do breathing exercises because I am having ‘conformal’ radiotherapy - the radiographer explained that the machine has been programmed to shield my heart from the beams. I haven’t noticed whether the ceiling is peeling yet but it probably is.
I’m still waiting for radiotherapy number 3 but have now got as far as the radiotherapy waiting area…
Hi JoJo and OldDawn. JoJo thanks for that it’s reassuring :). I asked to speak to the consultant radiologist I saw at my planning meeting to clarify a few more questions I had including why I was having rads to my clavicle area as well. He was very good and explained again and showed me the notes my original oncologist did at the start of all this and drew a picture of the lymph nodes involved :D. Basically I’m the same as you and it’s due to my lymph nodes. I just hadn’t picked up on that at all stupidly :(. I’ve been up to speed with most things through all of my diagnosis and treatment but now I think I’m just tired and weary of stuff being done to me! Not taking things in as I should be! I’m having 15. Anyway first one over today at least. Took about 30 minutes for them to double check all the measurements and do some x rays. They gave me confidence though as they were wanting to get it just right and there were lots of numbers flying around and kept adjusting me in small movements. They were lovely and very reassuring explaining everything beforehand and right through. Glad I had kept up my exercises and swimming when I could as it was a long time to hold my arm up and keep still! I had the local music radio station but it was for background noise really to make it feel less threatening I guess. No pictures and no peeling paint! They said they don’t like to recommend any particular moisturising cream but were happy with the Aveeno one I’ve been using regularly to massage my arm as advised by the lympoedema nurses to help prevent it getting bad as much as possible. I started with lymphoedema a bit back in Sep/Oct but no problems since then. I know it can be more of an issue a bit with both node clearance and rads to the clavicle area. The lymph nurses seeing me in about 4 months to see how I’m doing regarding that.
Hair feels fuzzy now on top of my head and even I can see a change now. It’s never been downy baby soft though as I’ve read happens (OH keeps stroking it and saying he can notice it growing…I think he likes the feel of it lol) and signs of a few eyelashes and few brow hairs starting to appear. Wig will be needed for a loooong time yet though :D. Am using Rapidbrow and Rapidlash but no idea if it’s working or if it just takes time!
I lost a toenail this am :(. Others holding on so far…
Good luck for everyone having any treatment this week and hugs to everyone else still dealing with the chemo or after effects.
Sue F xx
Sus12 - I am the same, I was far more organised and prepared to ask questions at the earlier stages than now. I suppose ‘chemo brain’ could be a thing after all, or maybe it’s just that I have got a bit weary of it all.
I think hospitals are now tending to do radiotherapy of the axillary lymph nodes instead of removing them because recent studies have shown it is as effective, but reduces the amount of surgery and also reduces the risk of lymphoedema. See: nature.com/articles/srep26304
I also came across a useful Patient Information Leaflet on Breast Cancer published by the BMJ in December 2016 which covers this, but I can’t post a link unfortunately, because the search goes straight to a PDF. You should be able to find it by searching on ‘BMJ Patient Information Leaflet Breast Cancer.’
There was no evidence of lymph node involvement with me but the radiographer said the boosters are probably needed because the surgeon only got narrow margins around the tumour. He was a bit taken aback that it hadn’t been explained to me by the oncologist. I hope that it will become clearer next time I see him.
I am on my way to the hospital now for number 4. Yesterday they were running an hour late and there definitely wasn’t any music. There is a suspended ceiling in the Linac room so no peeling paint, but there is a chip out of one of the strips that support the tiles.
Good luck for today OldDawn. I had some aching in my left breast last night but it settled after taking some paracetamol. The only thing I can link it to is the radiotherapy but I have only read about side effects including that later on in treatment or after. Will ask the radiographers today. I’ll look up the article. It will be interesting reading even though my lymph nodes have been removed.
About to go off to rads number 2 :/. Hope yours goes ok.
Sue F xx
Good reading about others radio appointments. I originally thought I would have 15 but told today that it will be 15 to the whole breast and 5 more to the original area since it was grade 3 but no nodes x
I was originally told I would have 15, then 20, now 23. I wish they had properly explained the reasons for the changes at the time instead of me having to drag it out of them.
Radiotherapy really does seem to be a moveable feast doesn’t it? At least someone has ended up having less than they originally said instead of more! Sus12 - pain probably wasn’t radiotherapy if yesterday was your first one, maybe it was just the surgery site playing up. Unless you are unlucky, effects don’t usually start straight away. Radiographer said they are cumulative which is why any redness or other skin effects tend to start around the second week. Number 4 is now done and dusted and we are on our way home. There was music again today (!!!) - must be rationed so they have it every other day. Hope yours went well Sus12, and everyone else on this thread having radiotherapy today.
Hi All
Haven’t posted on here for a while so was good to read and catch up on how everyone is doing, chemo seems to be a distant not pleasant memory now, main se’s have gone except tiredness which will be around for some time I think, just have to go with it.
I started radiotherapy last week so today I am on 7 of 15, it takes me longer to get there than it does for the treatment OH has gone back to work so am on public transport (train and bus), yesterday I had my treatment review with a nurse and we went over how I was coping physically as well as emotionally, no problems with sore skin at the moment but it is quite tight, she said this was normal swelling and should settle once treament is finished, she said the hardest part will be moving forward but that there will always be people I can contact if I am concerned about anything, I found the meeting very reassuring.
Good luck to you all
Hugs
Mary x
Mary - is there a Moving Forward course in your area? I was thinking of going on one when the radiotherapy is finished.
I’d love to go on a Moving Forward course I think it would really help me but the nearest is 3 hours away :(. There’s very little support at all in Cumbria which makes me determined to improve things once I’m through all this!
Sue F xx
I am thinking of booking the Moving Forward in Birmingham in June, because the next one in April clashes with the end of radiotherapy. I will probably be back at work by then, but as it is a phased return I should be able to fit it in. In the meantime there’s a local one day forum at my local hospital in Walsall on 22 April which I should be able to go to. I put myself down for one last month but had to cancel because of a hospital appointment.
Hi old dawn where is the course in Birmingham? The qe?
I could stay with my sister or my mum and get to a course but as it’s for 3 or 4 sessions each week it’s not on the cards :(. Will have to see if anyone is doing a one day session up here in the sticks like the one in Walsall Dawn!
Whatever happens I’m desperate to get away after the radiotherapy is over and my skin has settled. I think it will help me feel a lot better to get a break somewhere different.
Hope everyone is doing ok, especially those still on chemo or getting over the se’s. The neuropathy in my finger ends is improving slowly, 3 toenails less but new ones coming through, hair visible but I know it will take a long time to look like anything less ‘chemo’ like! Not enough yet to brave the natural head look…
I washed my wig last week and had no problems except I just couldn’t get the top/ parting/fringe right at all on Friday so I decided to wear a pre tied plain navy head scarf from one of the chemo head wear places with some nice longish earrings and braved the pub with a rather bullish ‘I don’t care and I’m not going to let it stop me going out’ attitude before I went 
(of course I didn’t really feel quite like that!) Of course no one commented apart from someone I know saying you look well and I actually felt more able to be like me and not worry about what the wig looked like or if it would move / fall off etc! I think that was a lesson learned for me!
Hugs to all
Sue F xx