Hope you are all doing ok? Been catching up with all the inspirational posts . @Kaz11 Deffo can relate to having a lack of patience with some people and them thinking everything is back to normal now treatment is over !! This emotional rollercoaster we are all on is some ride isn’t it ..it’s good we have this forum to all support each other. Have you finished virgin river ? We finished it last night !
Finished my rads last Friday .. skin has been ok bit achy / tingly and occasional nausea . I was told side effects would peak in two weeks !! @CrazyCatLady I had both sides treated and had the 5 sessions … hope you are doing ok after your surgery and will be thinking of you for results day 💕. @TeagoldSending love for tomorrow will be thinking of you 💕. @Gelbel You look fabulous on the photo .
Hello lovely ladies
It always makes me feel so much better getting all this support from my fellow BC chums when I feel like I am on a bit of a dip. I so appreciate all the lovely comments from @CrazyCatLady and @Teagold today. As you say this is a great place to rant and get things off our chests (pardon the pun from me this time @CrazyCatLady !). Think I always feel a tad guilty if I moan about friends who in general have been there for me but as I said sometimes the tolerance level is just not there for trivia! So on the same wavelength as you too @Teagold in that some long standing friends have been posted missing while some others that you would not expect have really stepped up to the plate. People never fail to surprise me and not always in a good way.
I read an article today on the Moving Forward course run by Breast Cancer Now by a doctor about how you feel post treatment and it so ticked all the boxes for me. I kept nodding my head as I read it - feeling lost, emotional, cast adrift after the comfort zone if you can call it that of regular appointments and reassurance from the medical teams. Tick ✔️ to all of the above. I wish my friends could read it as apart from one or 2 (one used to be a nurse) they all seem to think that treatment is over and I should now be “normal”. If I look like I might cry they are like “come on now, treatment is over” in a pull yourself together kind of way. The article I read today said that post treatment can be just as hard if not more so and I can so relate to that. Didn’t expect to feel so tired post bone strengthening and I still do. It’s almost been a reminder that there is still a way to go in recovering.
Anyway I digress. I went sans wig today when a friend over at mine for coffee. Not sure if I am ready to do the big reveal in public yet but it’s a start and she was amazed at how much my hair had grown back. It was you lovely ladies who inspired me to do it so thank you! While looking in the mirror today you would have thought I had eyeliner on but it was actually my dark eyelashes. It’s so long since I had seen them I had forgotten what a full (albeit short) set looks like. That’s after 2 weeks growth and like my eyebrows they literally started coming back overnight. Thanks so much @CrazyCatLady for the timelines re the growth which is good to know. Certainly won’t be plucking my brows until they are fully back in no matter how wild they look!
Glad you pre-op checks went ok @Teagold so will be thinking about you on Friday and hope all goes well with the surgery.
@CrazyCatLady hope you get good results with your pathology report and fingers crossed with your rads that you get the 5 doses like me instead of the 15.
Thanks again for all your support and understanding, it means the world.
love Kaz11 x
Hello @Gelbel - well done you!! You look fabulous and such a beaming and happy smile 🙂 Been doing the same myself and it's brilliant and no-one looks twice.
Out in a pub beer garden last Tuesday (only 8 days post-surgery) and thought sod it, can't be bothered....and it was fab 🙂 However now realise that after over 6 months of abstaining from alcohol, my limit is now only 2 glasses of wine lol
Hope you've got to the other side of rads now and everything is settling down well. Guess mine is coming in the next 5-6 weeks or so, so just awaiting my planning appointment coming through once I get handed back to oncology from surgery (pathology results due next Tuesday).
Already seem to have got back full movement so hopefully won't be any issues ref positioning with arms over my head. Hoping they put me on the 5 day intensive dosing regime rather than the 15 days, but guess it depends on whether they think my body can take it with it being done both sides.
Enjoy the rest of your week and weekend xx
Hello @Kaz11 - hope the effects of the Zometa infusion has worn off now and that you are managing to get some more walking in (particularly now we've got the more tolerable weather!) I so get what you say about people thinking we are 'back to normal' and don't get that our heads are still all over the place. One of my relatives said to me last week that it must be good to know it's all done with now I'd had my surgery. So when I explained that I still have radiotherapy to go, plus a further 9 months of herceptin/perjeta treatments and upto 10 years on tamoxifen, she was rather taken aback! They don't understand that we will be dealing with this for many years to come...not just once the cancer is 'removed'!
Love your description of your eyebrows lol - mine are now definitely diminishing, yet head hair is coming on strong. Ah well, guess I'll just have to be patient and wait for the brow and lash regrowth cycles to settle down over the next few months (daughter looked it up and apparently eyebrow growth cycle is over 64 days and eyelashes is 4-5 weeks). Looks like they'll grow and shed for a few cycles until they all settle down.
It appears that both @Gelbel and I are on the same path with regard to going headwear free! You should definitely do it! No faffing around with wigs/scarves and it's so much cooler....and no-one will raise an eyebrow (pardon the pun lol!). It is so liberating and once you've done it, you won't look back 🙂
Enjoy the rest of the week and weekend xx
Hello @Teagold - good luck for your surgery and hope all goes well for you!! After chemo it is a total doddle! Worst bit for me was having to sleep on my back....just can't do it! Sorry to hear you have had a wobble about your results, but they are still very positive and surgery can hopefully get rid of any stragglers. And it's perfectly fine to have these wobbles too (as the other ladies have said) - we all get them. Got another 6 days till I get my post-surgery results so trying to keep positive and trust that chemo and surgery has done the job - but if not, then I'll cross that bridge when it comes. Worrying doesn't make any difference to what it will be - but I know it is so much easier to say than do! I think we can sometimes overthink everything and probably guilty of doing worst case scenarios in our heads.
Good to hear your daughter is recovering well and no need for surgery. Must be such a relief for you xx
Love your description of your fuzzy duckling hair - mine is exactly the same lol 🙂 And I do think there is a hint of curl coming through already! I'm not going to bother getting anything tidied up yet, just going to let it do what it wants for a while and see where it ends up. I've found a conditioner which has a biotin boost (Hask which I picked up in Tesco) so just starting to use this but just once a week for now and see what happens. The Lush shampoo bar also seems to be working well as even my husband commented that it's coming back thick and fast now! And he doesn't normally notice anything lol.
Sounds like myself and @Gelbel are following the same path with regards to going out au naturel! I spent a couple of hours at a works leaving do in the pub beer garden on Tuesday and went bare headed and no-one batted an eyelid! Also now go shopping without headwear....it's so much easier and very liberating (as Angela says!).
Unfortunately my eyebrows/lashes are vanishing rapidly 😞 But using the It Brow Power pencil from Boots which gives a really natural finish to my drawn on brows. Also found some 3/4 length false lashes which are much easier to put on as don't need to go right to the inside edge of the eye.
So I'm now day 16 post-surgery and seems to be continuing to heal well and have been doing my exercises religiously and looks like I've pretty much got full movement back on both sides (apart from still having some tenderness around the snb scars and nipples). Have already had some of the nerve pains which do make you catch your breath, but literally only last 1-2 seconds. I've now started using some surgical grade silicon gel on my scars to hopefully get them to heal a little better. However they did apparently go completely overboard on the left side as I'm still covered in the surgical glue! It's not shifting at all - yet on the right side it's all nearly completely gone apart from at the T junction.
Wishing you all the best for surgery and here's to a speedy healing for you too xx
Love Sam xx
Hi ladies, thanks for your lovely replies.
@Gelbel that’s a fab photo, what a brilliant smile. You look radiant. Inspired by this, yesterday I finally let me husband at me with the scissors and he trimmed my long crazy strands so my hair now looks a tiny bit more presentable and I reckon in a few weeks I might be able to go out without cap, wig or scarf. Sounds like you had a fab evening and have a great bunch of mates.
@Kaz11 - you would be the first to say to me, or anyone else here, that you are NOT being a moaning Minnie, quite the opposite. You are an amazing brave strong person, look how much you’ve been through. You have every right to be fed up about listening to a friend bending your ear about something trivial. I think this forum is the best place to rant about stuff like that as it seems something that everyone goes through to some degree or another. One of my oldest friends has been so distant and non-communicative since my diagnosis, it’s really hurtful. I got one text in early March asking how I was, replied and said how helpful it was to get regular messages and please stay in touch etc, then nothing since. Even when I posted a short update to one of our group chats about my treatment, still nothing. Can’t really believe it. I don’t believe there’s anything to be gained from telling her, but it has really left me feeling upset and hard to imagine feeling the same about our friendship in future - but I’m sure I’ll get past that. By contrast, other friends - including some from work whom I’ve only known less than a couple of years - have been so amazing keeping in regular contact even when I don’t reply to every single text or email, it really has surprised me to see who stepped up and who didn’t. Anyway, again I’m absolutely not trying to make this all about me or dissolve into a nasty rant, but just to say that you’re not alone in having to navigate some of this difficult business with friends who don’t get it, and you’re dealing with it as well as anyone can.
Thanks also for the reassuring words re exercising etc, that’s helpful. I guess it will be what it will be and I’ll have to try and stay focused on healing.
So, had my pre-op tests yesterday and now just hope they all come back ok so that there are no delays. I should probably start making a list of stuff to pack and getting organised, but instead we’ve been decorating which is a brilliant distraction 😂.
I hope everyone is doing ok this week, big hugs to all.
What a fantastic pic @Gelbel
You look amazing, like the wonderful brave lady you are. Lovely to see you smiling so broadly. So glad you had a great day with your friends.
You have inspired me to go wig free hopefully in the not too distant future.
Like you I would be nervous about seeing people for the first time who didn’t know but I’ll need to take the plunge sometime!
Massive hugs to you.
I will keep everything crossed for a brilliant outcome for you after all you've been through.
Loving your eyebrow experience @Kaz11 I can't believe my 'not really existent before chemo' ones are coming back darkish and they can be seen with no make-up on them.
I do use a bit of coloured mousse on my hair (found a way to tone down the white/grey without colouring my skin). Here's me on Saturday - I took 7 of my Angela's Angels out to thank them for being amazing support. Couldn't call it a thank you as they refused to be thanked. Excuse the big grin - photo cropped from a selfie with 2 others.
I had/we all had a fab time. I even braved the local pub (I didn't drink - still off it til tomorrow) and saw friends' husbands for the first time since last summer. They were lovely - one was quite teary eyed claimong he couldn't believe how "amazing you look" and how lovely it was to see me and all that malarkey. They'd had a lot to drink while the girls were eating!
Even the local village idiots didn't say anything or look (obviously) twice.
I had been dreading seeing acquaintances or friends who don't know.
Love and hugs. 🤗
Hi @Teagold lovely to get your update.
Hope all goes well for your op and there are no delays. Surgery is hardly something any of us looked forward to but I think having a delay would be a very sore one to take at this stage. I think the fact you have been exercising will help you greatly. I was lucky (!) in that I had my surgery before anything else so didn’t have the fatigue of treatment to contend with so went into it fully fit so to speak. They don’t mess about nowadays and especially during covid times will want you to be in hospital for the minimum time possible. I had my op on the Friday night, was showering myself the next day (I didn’t have any drains with my implant though) and home on the Sunday. I could have got home on the Saturday night but felt that was a bit quick as I didn’t have anyone at home to help me. However I was back walking (only a short distance) but in a matter of days. I made sure there was someone walking beside me though in case I felt a bit off and needed their support. I honestly found the surgery easier than the treatment but as I say I didn’t have treatment beforehand. You are a strong lady so you will be back on your feet in no time I am sure. Totally understandable the apprehension about the pathology results. I think everyone is exactly the same. I remember the relief at certain results and then the devastation when I found out I had to get chemo. It’s totally nerve wracking waiting on the results.
Also get where you are coming from re the new hair. I keep touching my head too - maybe it’s a bit of disbelief that it’s coming back as I was always worried it might not. However anything which stimulates the follicles is a good thing so I will keep rubbing my head.
I too had long strands left from my original hair as I didn’t shave my head. However one of the nurses trimmed them when I was in getting my portacath removed as they had started to tangle when I was washing the new duckdown on my head.
Funny re your eyebrows as mine disappeared and are coming back at different rates on each side too - odd isn’t it.
Feel a bit strange now that I don’t have another treatment for a while as that was my new normal for so long. Don’t miss the cannulas, chemo etc but miss my comfort blanket of the nurses big time and emotionally still up and down. No particular trigger - like you it can be a text, music, a photo or a kind word and that’s the floodgates opened so don’t beat yourself up about it. Perfectly normal when you think about all we have been through. I felt bad as I lost it a bit last night with a friend who was moaning about trivia. I did apologise but my tolerance is not there at the moment for the small stuff which is nothing in the grand scheme of things. Sorry if that sounds horrible and uncaring but I don’t feel that surgery/chemo/rads and all the psychological effects of all that are in the same league as putting on a wee bit of weight. My friends don’t quite seem to get that I am not “me” yet. Just because active treatment done doesn’t mean I am not still dealing with the effects of it all. Anyway I’ll shut up as sounding a moaning minnie now and I didn’t mean to.
Sending you big hugs and positive vibes for your surgery.
Hope everyone else is doing ok in this heat.
Also, forgot to say - @Kaz11 you made me laugh with your Denis Healy eyebrows! I might have already mentioned it but one of mine is growing back with a vengeance and the other barely showing. Very odd. But like you, I’m not going to pluck anything - just grateful to see new hair coming through. And new baby eyelashes I just noticed this weekend too!! Xx
@Gelbel - glad the 🤢 is easing off now. Also very inspired by your hair stories. I think yours must be quite a lot longer and thicker than mine as I remember it started growing back some weeks before mine did. What a lovely thought to be able to go out without hat or wig! You’re so brave. I was also remembering recently that feeling of running a hand through my hair and wondering how long it will be before I can do that. At the moment I quite enjoy stroking my “fuzzy duckling” head, and my kids seem to enjoy it too! My husband is threatening to get the scissors/clippers out because now that I’ve got regrowth, the random longer strands left from cold capping look a bit ridiculous. But I’m holding off get anything cut until after my op.
@Kaz11 sorry to hear you’ve felt wiped after the injection, did the nurses say how long that might last? Hopefully you were able to stay on the sofa and get your Virgin River fix though! I completely identify with what you were saying also about anxiety etc. Since finishing chemo and feeling a bit more “normal” (ie not just “survive today” mode…) I find my mind is also more active and so a lot of the anxiety/upset that I didn’t really have - or have time for - at the start seems to be coming out now. I’m also a bit weepier than I was - just randomly, a text message from a friend might set me off or a song on the radio. All v normal I guess, it’s got to come out somehow. I can imagine it must have been comforting to be back in the hospital last week seeing the nurses etc. I’m not missing chemo, but something about the structure and the regular contact did become reassuring and this period between chemo and surgery has felt quite odd.
My surgery is scheduled on Friday this week. Going in tomorrow for pre-op tests so at this stage just hoping that nothing gets derailed due to Covid as it all starts to sound quite doom and gloom out there. I’m not so worried about having the operation as I am about pathology results and recovery time. For pathology, so anxious that they’ll say I still had a lot of residual disease or that it will still be in the nodes they take out and then I’ll need more surgery. But, nothing I can do about it. For recovery time, because it’s been lovely having more energy these past few weeks I’ve enjoyed getting out for walks, a couple of short (and VERY slow) runs, doing yoga etc and I’m guessing I won’t be able to do any of that for ages. Keeping moving is a good way of distracting myself from the mind-whirring so I’m hoping at least that I can be out for walks before too long - any top tips here from those who have already had surgery would be awesome (I think nearly everyone here has had surgery now, am I the last?).
Hope everyone is doing ok and that the cooler weather is helping - dramatic storms here all day yesterday but it’s definitely easier to sleep!
Hugs to all
Hope you are all enjoying the sunshine. Never thought I would say this but am actually finding it too hot! Sleep very difficult as a result but need to enjoy the good weather while it is here.
@Gelbel what a brave person you are going out au naturale after your haircut. Massive pat on the back to you doing all those things without a wig, that is just fantastic. Well done you. I hope one day I can be as brave. Maybe after my trim at the hairdressers at the end of August I will take the plunge. Getting a bit more used to the silver tufts on my head - wouldn’t go as far as to say I like them but it’s what I’m stuck with at the moment so need to accept it.
Was back at the hospital on Thursday for first 6 monthly dose of the bone strengthening drug - Zometa. Was nice to see the nurses again and get some questions answered. I miss the comfort blanket of seeing them weekly. One of the nurses said I looked like Dennis Healy with my eyebrows! In the last week to 10 days my eyebrows and eyelashes have come back pretty well. Eyebrows are a bit unruly and sprouting all over the place even well under their natural line. However I am just so chuffed to see them coming back (and dark not grey yay!) that I don’t want to pluck them. They may resemble a couple of black slugs by the time they have finished growing back but they are framing my face again and that’s a massive plus.
I was told I would have flu like symptoms for a couple of days post Zometa. Joints ache anyway so the extra stiffness was not much of a surprise but have felt gubbed. Tiredness not helped by the heat so have tried not to do too much although my mind races if I am idle for too long. Tummy a bit iffy again so not sure if it’s the Zometa or the calcium tablets I have to take for a month so I can see me being back on the lactulose - happy days!
Next stop is follow up with onco in a couple of weeks. Also got my next appointment for Zometa in January 2022. Nurse said covid not going away so even then she thinks I will need a routine test ahead of my appointment.
Anyway happy Sunday evening and enjoy the sunshine.
love and hugs
Touch wood, the sickness is gradually getting better. Please let it be rads. 🙏 The extreme tiredness is on the wane too.
I had my haircut on Monday - stop it at the back - to give some shape over my ears and into my nape. Today I let Mr Hermes do a collection when I was wigless and hatless - not a bat of an eyelid. A nosy neighbour went by at the same time - nothing.
So I got my big girl pants on and went to Aldi with nothing on my head. Not a tiny glance. Head was rather cold by the fridges!!!
It was very liberating. I was grinning like mad behind my mask.
Interesting to see all bar 1 customer had their masks on. The one that didn't? Younger woman with hair extensions, full face of make-up with 6" false eyelashes and the biggest trout pout I've seen outside of a magazine or TV. Why didn't that surprise me?
Hope everyone is well and continues to recover from your treatment and side effects.
Love and hugs 🤗
@Teagold love the descriptions of your radioactive clips! Gave me a laugh this morning thinking of you potentially setting off alarms in all sorts of places! 🙈
I had markers inserted at the time of my biopsies but it was to indicate where the tumours were for additional scans. I was told they would stay in if I got lumps removed (at least I think that’s what was said - chemo brain!!!) and they would be removed with everything else if I got a mastectomy so they would have gone in the bin with the rest as I had a mastectomy. It was an injection I got for tracing the lymph. It’s interesting to see how they approach things differently even in separate areas of the UK.
Have walked every day this week but legs felt it big time last night. They were aching post chemo anyway and apparently the letrozole causes aching joints too so not sure which is the culprit. Been having a soak in the bath at night to help but actually had difficulty getting out of the bath last night which was a bit concerning. Don’t think I am quite ready for one of those devices that helps you out of the bath yet - I am 55 not 75! Finding my right hand very stiff when I wake up in the morning and my index finger more so which is weird. Still have neuropathy too.
Like you I went to the gym and classes pre lockdown but although the local sports centre is open again I am still too nervous to go because my immune system could still be compromised so may do some youtube vids as you suggest. Onco said I should do yoga and there is a video with the Moving Forward course.
Totally with you re the hospital appointments. Like you was hardly at doc before and since November it has been constant hospital visits. It probably sounds pathetic but in a strange way I am looking forward to going to the hospital on Thursday for bone strengthening drug- not for the drug itself obvs but to see the nurses again and get some reassurance. I miss that comfort blanket too so much. Am told I will feel rotten after the drug so can see me lying on the sofa bingeing on Virgin River next weekend!
My anxiety which I have had on and off for years is kicking in again and could cry at the drop of a hat. Not sure if it is the letrozole which has a massive list of sfx or if I am feeling that way anyway. Someone told me that post treatment you kind of go through a grieving process. I hate feeling rubbish (who does) so always give myself a hard time for being that way - see what I mean about not taking my own advice!
The complementary therapist from the hospital called me last week and she does private sessions so I am treating myself to a reflexology session in a couple of weeks. She will come to my house which is great.
@Teagold I think you will be surprised how much you can do post surgery as you are obviously an active person so am sure you will be back on your feet quickly.
@Gelbel sorry to hear about the sickness. Hope you feel a bit better over the weekend. Re the Moving Forward course I just signed up for this myself via Breast Cancer Now and like this forum they put you in a group and private message you with the info. It is a separate forum to this one but the same process. As I say I did this myself it wasn’t a course that I was put forward for via my hospital so anyone can do the same.
Hope everyone enjoys the sun safely this weekend. I will be covering myself in factor 50 shortly.
love to everyone
Thanks @Kaz11 and @Gelbel for your lovely and replies and understanding. You’re so right - we hardly get time to get our heads round diagnosis before the conveyor belt of treatment starts and that becomes the focus. 43 appointments!! That says it all. It is such a comfort blanket having the rhythm of appointments and regular contact with the medical teams isn’t it. Before all this, I was someone who could go years without seeing the GP or even taking a painkiller, now I think the longest I’ve gone without some sort of hospital/doctor appointment is six days in the last five months and I really don’t mind being in such close and frequent contact, makes me feel safe. And @Kaz11 you’re so right about us being hard on ourselves and not taking the advice we give to others! I think whenever the routine shifts in any way - gap between treatments or end of treatment - it is really tough emotionally and just takes time to get used to the change. I hope you’re doing ok and that the MO course helps.
@Gelbel really sorry to hear about the 🤢 you’ve been having. Seems particularly unfair to have got through chemo and then have this to deal with now as I remember you saying you had a fairly cast iron stomach before - hope it settles down now that rads finished and with a break from the drugs.
@Kaz11 like you, I’m trying to get out for more exercise now whilst I feel well enough. I read somewhere that walking regularly can really reduce risk of recurrence. I’m mindful that I’ll probably have a spell of not being able to do much (if anything!) after surgery so will try to get as many steps under my belt as I can in the next two weeks. I’ve also found some of the online yoga vids really helpful to do, have never been into yoga really but doing it at home with a YouTube video seems to suit me and have enjoyed it. I’d normally be in the gym a couple of times a week but haven’t been since last November when we went into Tier 4 lockdown and don’t want to risk it now with covid on the rise etc. Anyway, at the moment feels better to be doing gentler stuff rather than pounding on a treadmill which I don’t think I’m quite up to!!
I had my scout marker put in yesterday. It’s a little radioactive clip that helps the surgeon find my lymph node. So the radiologist inserted this thing, then tested with a probe to make sure it beeps when activated by the radar. Very strange and quite funny! I feel like I would set off the security barriers in shops but he reassured me not. It was the same radiologist I had the day I was first diagnosed, so last time I saw him I was in a complete tailspin but I remember him saying then “whatever this is, we can treat it” and it was the best thing I’d heard so far that day - he was lovely. Also made me laugh saying the radioactive clip was trackable by the government so they could now follow my every move - would be far more interesting if I went anywhere! But we are hunkering down now for pre-surgery isolation so apart from the local park and a few shops, not much of interest!
Hope everyone is doing ok and enjoy the sunshine this weekend. Factor 50 definitely out in force here.
Love to all
Hey @Teagold - totally understandable that everything is catching up with you. I suspect it does with all of us, if it hasn't already. So rant, rage, cry, dance do whatever you need to do. And as for getting fixated we do, it's things we can hold onto in the roller coaster of treatment and appointments.
@CrazyCatLady Hello to you and your new twins! Glad to hear that you are doing well.
@Kaz11 Glad to hear you are on the Moving On Course so quickly. I've found out I won't be invited to mine for a while as the post treatment onc appointment triggers it where I am - that appointment will not be for 6-8 weeks. 😲
Not long back from my last rads. Was more emotional yesterday than today. All I can think about today is I blooming well did this. We all did!
I am a tad scared as the comfort blanket of my amazing medical team is being packed away. I know they are still there for me - I just won’t see them or speak to them for a while instead of several times a week. I worked it out - I had 43 appointments since I called my GP!
I'm feeling more nauseous than ever I did on chemo. TBH I've been sick a couple of times and could heave a lot of the time. So my BCN checked with my onc and I've stopped the biphosphonates for 4 weeks as it could be them. Though they think it's the rads. Least we'll find out one way or the other over the next few weeks.
So now it's seeing whatever physically my post-treatment best will be and let my head get to grips with everything that’s happened – I’ve not really had time to digest it with the merry-go-round of appointments.
Have a lovely weekend ladies. Enjoy the weather - remember your factor 50 if you've been told to use it!
Love and hugs 🤗
You are not moaning at all so please don’t be hard on yourself. Totally understandable you have had a wobble. I think we are all on an emotional rollercoaster at the moment. Like you I definitely feel it’s all catching up with me now mentally. Was concentrating on the physical side for so long. I have too much time to think at the moment so will be increasing my work hours to give me another focus. Think it’s very tempting to google but remember that each of our cases of BC are different so you might only get general info from google which can sometimes set the hares running as it won’t be specific to you.
Know what you mean re the duckling growth on your head which is such a good description! I feel as if my head feels quite soft too if that makes sense. The Nioxin I use is system 2 for progressed thinning as I had so little hair left. The eyebrows and eyelashes coming out post chemo are another kick in the teeth I feel.
Glad your daughter is getting better now and that you got out for a change of scene. I too have been nervous about venturing out much. I have tried to increase my walking this week. Went out on my own on Monday for the first time in months as felt light headed due to taxol before so always went with someone to be on the safe side.
The Moving Forward course is run by Breast Cancer Now. I felt I needed it due to me feeling the whole experience is catching up with me a bit. In non covid times I think you would probably be in a hospital setting with speakers but due to covid the videos are posted each week online so it was an exercise one I looked at today. Meet the other participants on zoom next week.
Hope all goes well tomorrow and with your radiotherapy discussion. As everyone keeps telling me be kind to yourself and don’t feel bad about feeling bad. You are not moaning and it’s totally understandable that it’s all catching up now. Hearing myself saying this and realise I should be taking my own advice but not so good at listening to myself!
lovely to see all these new posts!
@CrazyCatLady I’m so happy to hear that your surgery went so well and it sounds like you have super mending powers to be doing so well just a few days out from the op.
@Gelbel sounds like rads has been difficult in lots of ways but I’m glad to hear your skin is holding up ok and by now you must be literally one treatment away from the end of it? So congrats for planting this next flag. Also exciting to be thinking about retirement.
The hair regrowth tips here are great - I now have “fuzzy duckling” regrowth on my head in the friar tuck bald spot left by the cold cap. It’s so weird touching it, feels like a baby’s head. I also have one eyebrow growing back thick and dark but not the other - very weird. Meanwhile, eyelashes are still falling out - what’s that all about?! I’m going to try the nioxin treatment you’ve mentioned @Kaz11 and @Rainbow70 … definitely worth a try.
I had a major wobble over the last few days re scan results. In a nutshell, they were good in that they showed a continued response to chemo, but I’d got myself totally fixated on getting a complete response and it doesn’t look like I will get that as there are still some abnormalities showing up, albeit much smaller than they were - the total “area” looks about 10% of what it originally was. Saw my onc on Monday and I think he was expecting me to be pleased and reassured, but due to my fretting and - sorry to say - Googling over the weekend I was not really in that frame of mind. Like you said @Kaz11 I have found that emotionally I’m really up and down at the moment - physically I feel pretty good now that I’m three weeks from my last EC, but I think it’s all catching up with me mentally. My op is two weeks away, I’m going in tomorrow to have the scout marker put in and then on Monday I’m meeting my radiotherapy consultant to find out what the plan is. Surgery still feels a long way off - tbh I’m eager to get on with it and feel a bit in limbo at the moment. I am anxious about what they’ll find and the pathology results but as everyone keeps saying - it will be what it will be and nothing I can do!
On the plus side, my daughter’s leg is healing up ok and she didn’t need surgery or a cast so that’s a BIG bit of good news as I was really worried for her. We managed to get out yesterday for a picnic and just being in a different location for a few hours made all the difference - haven’t really been anywhere except home and the hospital for the last five and a half months!
I hope this post doesn’t come over as whingey or gloomy - I’m ok, really, I think it’s just my head catching up with everything and maybe the obsession about scans and what that suggests they might find during surgery is a way of distracting myself from worrying about the actual op!
@Kaz11 I’m really interested in your Moving On course, I know a few others have done it too - I’m not at that stage yet, but is it helpful do you think?
Anyway, good luck @Gelbel for the end of rads and I hope everyone else is doing ok.
Love to all
@CrazyCatLady so pleased to hear that your op went well. Amazing that you got home the same day as surgery so well done you. You are one strong lady. I was told I could go home the next night but was too nervous so stayed the extra day.
Love the way you describe the new set of twins, you have a great sense of humour! Know what you mean re the uplifting. My new one with implant is much perkier than the other side. I probably said before but don’t think my plastic surgeon appreciated my humour when I said how are you going to make the new one match the saggy one on the other side (I was nervous and trying to lighten the mood). He said that was why he had suggested corrective surgery to the other side to even it up so my joke was lost! Fingers crossed for your post surgery results that you get the news you want.
Great re the makeover too that will give you such a boost.
@Rainbow70 glad you are using the nioxin. I think it’s definitely helping my hair grow back. Still very fluffy and soft. Will see if that changes. Also definite fuzz in the eyebrow area today for the first time. Have felt all week that there was dark shadow in that area but wasn’t sure if it was my imagination or not as only about one original strand on either side left. However there is definite growth today. Like the hair on my head it feels very soft not like the usual eyebrow texture but it’s coming back and that’s all that matters to me. Using Lipocils serum in that area so hopefully that’s egging the regrowth on too.
Started the Moving Forward course so have just watched a tutorial on exercise which was really helpful as I was concerned that there were maybe certain exercises I should avoid due to surgery/reconstruction. Feeling tired today but trying to do a bit more exercise this week as it makes me feel a bit more like me.
Good morning my lovelies! Yes I'm still here....just been rubbish at catching up and generally just getting on with life and stuff!
Just been reading all the posts I've missed in the last few weeks and sounds like you are all progressing well (despite all the niggles along the way).
So I've had my surgery on Monday and it all went well....and looks like they managed to save both nipples, so yay! Did throw up big style several times after I came around from anaesthetic and my BP dropped like a stone so had a few hours of waiting to get this all under control before they let me out. Surgery at 11am and home at 8.30pm - very tired, tender and achy but so far paracetamol and the occasional co-codamol have been enough to ease up the pain.
Managed to shower yesterday so got a bit of a better look at how the new set of twins look, and quite pleased with the results so far. Seem very high up now and very much 'uplifted'! So no longer dangling down onto my belly lol ! Going to take a while to get used to them 🙂
They did the snb incisions under my arms but the one on the left is a bit higher and the more 'tweaky' of the two...been doing my exercises and already seem to have pretty much full movement in my right arm, just the left one to keep working on.
Hubster has been leaving me a thermos of coffee and a breakfast selection platter for the last couple of days as he's had to go into work. And daughter had to help me get the compression socks back on yesterday...can't do these at the best of times, so never mind when I've just had surgery!
So all in all, despite my anxiety about it, it has all gone really well - just waiting for my appointment to come through for the wound dressing check and to see how everything is healing (but from how I'm feeling, I think it should be doing ok). Been told results from surgery will be around 3 weeks, so fingers well and truly crossed that I get the news that it's all gone and I've got my PCR!
In other news - hair is definitely sprouting through well and the top of my scalp is now filling up too (sides and back is already around 5-10mm so was looking like a monk lol!) Also coming through a more dark grey too, which makes it look a bit more substantial - but still have the silver strands in there too.
I've also won a free Boudoir make over and photoshoot to be done at the end of August - so time for me to fully embrace my new look and body shape. Love having make up done (they offered to do hair too but not really that much to style yet!) but may take my wig so I can have some photos with and without. Also get an afternoon tea with fizz as part of the package....but only just back on the wine so think one glass will be my limit.
And this week my daughter started her new job and on Friday she will be taking her driving test...eek! She's been using my little Fiat 500 and her driving instructor is taking her out in it again today for a 3 hour lesson before tomorrow's test at 8am! So hopefully there'll be more good news by the weekend xx
Hope you all manage to enjoy some of the glorious weather we shall be having over the next few days.
hope you are all doing ok ?
@Leftygurl @Teagold so pleased you have both finished chemo and another two flags planted at the top of the mountain. Cupcakes looked amazing for the nurses @Leftygurl . I hope your wound is also continuing to heal well . @Teagold hope the scans went ok and you have not to long to wait for the results . Also hope your daughter is doing ok.
@Kaz11 how are you feeling after the rads ? fab news eyelashes are growing and you have hair appt booked. I have bought some nioxin treatment so 🤞helps with the hair growth . Interesting to read you still have lingering side effects too from the treatment . Glad no major side effects from the hormone tablets 🤞stays that way . I have some neuropathy to fingers / toes occasionally and two discoloured nails . Half way through paclitaxal started with burning , stabbing pain to shoulder joints . This has settled now to right side just have it on and off left side but much better than it was before . Veins are so hard in arms to after chemo. Start rads next Monday 5 sessions !
@Gelbel Your nearly at the end of rads ..👏 sorry to hear about all the delays. Good to hear you have hair appt booked in too and great news about the retirement decision.
Sam how are you doing ?
love to everyone 🌈xx
Great to hear from you and now you are on the home run re the rads. Well done on getting to that stage - you are nearly there.
Like you I found it all quite impersonal compared to the chemo treatment but then I was almost in for a full day each chemo treatment as opposed to the few minutes for rads. I was told by someone recently that the hospital where I went has 10 machines which do rads and they can see up to 40 patients a day at each one so that’s a lot of people. It felt very much like a production line to me and I felt a bit rushed and stressed if I needed to ask a question as they were already wiping down for the next person as I was getting off the bed.
Interesting re your scar as mine was a bit sensitive too. I have been using the cream they gave me but I didn’t get too much of a rash.
I started Letrozole 2 weeks ago. So far nothing major re sfx touch wood but I’m not counting my chickens. Legs very stiff in the morning until I get going but I was like that towards the end of chemo anyway.
Still a bit tender where portacath was removed but they did go through the same scar so I suppose it is likely to take longer to settle. My skin generally is also a bit itchy and still have neuropathy in my fingers and toes on and off. Menopause flushes off the scale!
Was at dentist today for a check pre bone strengthening next week. Didn’t appreciate the affect it can possibly have if you need a tooth removed so something else to get my head around. Dentist said everything ok at moment but I have some teeth which are heavily filled which could cause issues down the line. He said some people get potential problem teeth removed pre bone strengthening but I am not going down that road. Not keen on a “just in case” extraction. Getting anxious too about the bone strengthening as I was told it will make me feel rotten for a few days so not looking forward to that.
Hair is growing but still very silver fluff. Like you I have made an appointment to get it trimmed and into a shape late August as I hope by that time it will have grown enough to work with. Eyebrows gone but feel there is some 5 o’clock shadow there as you say so am hoping that is a sign of them thinking of making an appearance into the world again. Also have some eyelashes coming back. I felt them there for the first time yesterday. That gave me a lift as my emotions have been up and down like a rollercoaster.
Well done on making the decision to retire. As you say you can do without the stress of work.
Hope everyone else is doing ok. I have signed up for a Moving Forward course.
Ah, my rather lengthy update has disappeared.
Love and hugs to everyone. 🤗
Ahh yes that’s me as well, pulling my myself up the stairs using the bannister, my last Pax treatment certainly gave me a rotten send off! My knees are really aching today, mind you it’s like a switch someone throws after I finish my 3 days of steroids, I did have an active weekend though, went out mountain biking on Saturday then went for a 9 k walk Sunday and felt pretty good! Then no steroids Monday and I’m crippled. I’m so looking forward to this lot getting out of my system and finally starting to feel like me again, mind you until rads start!
You sound like your rushed off your feet, what with your poor daughter and coping with your sfx, at least it’s all temporary, which is what everyone keeps telling me, I know they’re right but it’s hard when you have something happen in your family like that, try to take time for yourself, and good luck with your scans!
Hi Alice / @Leftygurl
Gosh so sorry to hear that you’re still having your wound snipped but good at least that it’s not getting worse and that the process doesn’t hurt you.
How was your last session last week and how are you feeling? Congratulations for getting through it all, especially with everything else you’ve had to deal with. Those cakes look amazing, I bet the nurses were thrilled. Mine had to put up with M&S biccies and Percy pigs 😂 I could never manage to make anything as beautiful as that!
Hope everyone else doing ok. I’m slowly coming out of the worst of the after effects of my 4th EC. Last week was a blur between feeling grotty and trying to look after my daughter who is still home from school with her broken leg so needs lots of fetching and carrying poor thing. There were days when I actually needed to pull myself up the stairs using the banisters! I’ve got scans this week, so naturally I’m getting a bit nervous about those but hope they show progress.
big hugs everyone
@Gelbel Your experience of rads sounds incredibly traumatic, I really hope that my week doesn’t go that way, I hope the rest of your appointments go a lot better. It sounds like you gave them a piece of your mind though, good girl!!
I’m interested to know if everyone who are at the rads stage have taken the week or whatever the length of treatment off work as I will probably be starting in about 3 weeks time.
So, it’s my last chemo tomorrow and tbh I can’t bloody wait! When they give you the anti sickness and steroids and it makes me feel quite giddy, I hate that, and when the paclitaxel is being infused I get this severe drop in my mood, it’s all I can do to stop myself from ripping the line out and running out the door, but I will miss the nurses, they have been wonderful and I made some cakes for them all today to take tomorrow.
On the portacath wound front, it’s much as before, walking big hole in my chest that I rinse out every day, put some gauze in the cavity and a plaster over the top. I saw my plastic surgeon last Tuesday and he got his surgical scissors out again and snipped out the stuff that’s stopping it from healing properly, it doesn’t hurt. I’ve just got to try and keep it in this state until after chemo & rads and when my body becomes healthier so some proper healing will begin, hopefully, fingers crossed!
Love to everyone
Oh @TG how very sorry I am to hear about your son. I can't imagine for one second how awful that must've been. And I'm so with you on not making others feel uncomfortable.
I went with how my hubby and I got together. A few people pinged me to say they were surprised I didn't go with my BC story. It was part 3 of a 3 part (verbal) presentation course and we had 1 minute today to bring the story to life. Then we gave each other feedback. Wouldn't have been kind to my colleagues to have to give me feedback on any aspect of me telling my BC story.
My rads story... no saying my machine was experiencing a delay. Or more rightly not working. A couple of them had 20-30 minute waiting times showing on the notice board - but not mine. 40 minutes past my time I went to reception to ask what was going on, a radiologist called me just as I was to ask. My machine was broken and it could be another 20 minutes at least. #Fuming. Why not tell me when I arrived - manage my expectations. On the dot of an hour late I was called. 11 minutes later I was out.
Seems someone had tampered with the machine so even the 'turned off in neutral' calibrations were messed up. What the actual? 🤔
I vented in a talk polite and slow (just completed an impactful, verbal presentation course) type of way. ☺ This is just day 2. I heard patients saying over 50% of their treatments are late, it's like being on a factory line, so impersonal and it seems I should never had been told my appointment times would be the sameish time. This nugget of information is also in their rads info booklet, which I happily pointed out. The end of the day/start of the next day appointment time v patient welfare was also mentioned.
I'd got more response telling the tank of fish in reception. Awful, awful experience after the wonderful experiences I've had so far.
And it's not even Wednesday. Everything goes wrong on Wednesdays!
I hope you have a good Wednesday.
Love and hugs 🤗
Sorry it’s so late and I’ll try not to ramble on in this post and make it a bit shorter than normal.
@Gelbel you are not being selfish at all. That’s rotten re your rads appointments being all at different times I think that is so unfair on you as the patient. I was lucky as mine were at the same time each day but to not even have the same times in one week is so unfair. They should be taking into account how tired you could feel so not right to be in late one night and in first thing the next day. So annoying I would be raging. No wonder you are not a happy 🐰. As if this whole experience is not hard enough. Sending big hugs.
As for the trainer as @Teagold says I would love to be a fly on the wall when you paste him to it. You go girl!
@Teagold I am so sorry about your son. What a horrendous time you have had that’s just awful. Big hugs on their way to you too. Life is so unfair.
Glad the info I got today was useful. I would not have thought about the reactions of family being the opposite to ours until she said. I know someone whose husband arranged a surprise party for her post treatment and she was just not ready for it. I know on Friday I just wanted something to eat and then get to bed. As you say @Teagold we don’t feel our best and I know exactly what you mean re how you look getting you down so I certainly ain’t in the mood to be a party animal right now - wouldn’t have the energy either. Unfortunately unless people have walked in our shoes they don’t get it. They need to realise our bodies have been hammered and as the medical people keep telling me it will take time to recover physically and emotionally so parties will need to wait.
Sleep well everyone.
@Gelbel v sorry to hear about the rads schedule, that sounds like a real jumble and inconvenient. Not selfish to grumble about that at all. Would love to be a fly on the wall at your training course. Perhaps you’ll knock through the patronising and do him a favour! I hate those sort of icebreaker exercises. The first thing that usually pops into my head when they ask for a life changing experience is “my son died” and then I feel like I can’t say that because it will make everyone feel uncomfortable then it just stresses me out that I’m making up something else!!
@Kaz11 that sounds like such a helpful chat you had, and loads of really useful and reassuring info (for us all). My counsellor said the same thing when I spoke to her first time about emotions catching up after treatment and all being v normal to feel completely done in and weepy towards the end. I remember noticing how untearful I’d been for the first few months of treatment, just shock I guess and as you say being a bit “head down just got to get on with it”. It’s interesting also the difference between family emotional reaction and ours, I hadn’t thought of that. That’s helpful because I can foresee that people’s reactions and expectations might get harder to deal with - already I’m detecting a bit of “hurrah! You’ve finished chemo you must feel like celebrating” and I’m like - er, no, I’ve still got two big blocks of treatment to go plus all the uncertainty and not to mention I’m shattered and look a fright which is getting me down. It’s just so reassuring to hear that most people feel like this and it’s all normal and all ok to just let the tears flow when they need to. I’m feeling very antisocial and happiest when I’m home in my little bubble. I think it’s amazing @Gelbel that you managed so much socialising and not surprised you were so tired. I just feel I’ve lost all my social skills and couldn't cope with any kind of gathering at the moment.
Also, keep going with the sweets and choc @Kaz11, I’m heavily into comfort food at the moment and figure anything that makes us feel better is worth it. Now isn’t the time to be fretting too much about it.
I’m definitely tireder after this fourth EC so have been taking it very easy (aka being very very lazy). Daughter is home from school hopping around on crutches, getting us both up and dressed this morning was exhausting so we have been on the sofa watching Friends for most of the day. Fortunately she now loves it as much as I do 😂.
Hope everyone else is doing ok.
Hugs to all
Thanks for sharing your chat with the radiographer @Kaz11 - good to know we're 'not going mad' with our reactions. Interesting re the leg aches. And believe me, I had no stamina when we were away - crawling into bed at silly o'clock.
Rads #1 was boring - look a bit longer as they did more imaging. I'm not a happy bunny - sorry if this is selfish... got the rest of my 15 rads appointment times - so much for sameish time everyday. Some 6pm - one of them a Friday! Some of days after the late ones, I'm back in at 9am. They can't change the times. Shouldn't tell you expect sameish time if they can't deliver it. It's not as if it's late one week, afternoons another and mornings another. Oh no - a right mix every week. And it means I am going to have to cancel my virtual make up class scheduled for Wednesday. Not happy at all. 😠
I know that a few weeks after rads finish, I'll have a consultant's appointment and that (in my authority) triggers an invite to the Moving On workshop/s. I will be signing up for that/them.
And because of the times I'll now be able to go to a training course our team is on. The lead trainer has a patronising, superior attitude - everyone has complained about him. We have to tell a story about something that changed your life for ever. He's getting both barrels - and I'm in a very safe (virtual) environment with my teamies! HA!!! 😈
I hope everyone's day has been better than mine.
Love and hugs 🤗
@Teagold so glad you got your last EC as planned that will be a weight off your mind. I remember each week worrying whether or not my bloods would be ok to get treatment. It was always such a relief when they were. Not that I wanted the chemo (who does?) but just didn’t want any delays. I think that would be particularly hard to take especially at the last one.
Sorry to hear about your daughter that sounds so painful. No wonder you are emotional as it’s something else for you to worry about. I hope she gets better soon.
Thanks re the counselling. It hasn’t been offered specifically but I am now back in touch with one I spoke to after I lost my Dad. He has no experience with BC but it’s good just to get things off my chest to him (pardon the pun!). The moving forward course will be good but feel I need to catch my breath a bit post the end of rads before I look into the details. I also have a moving forward folder from the breast cancer nurse which I will read too.
Had a follow up call this morning from one of the radiographers. I was told on Friday this would happen as they check your sfx post rads. The girl was so lovely on the phone. I have a slight pinky redness which I have cream for. I also said I felt my menopause flushes were more intense last week and more frequent especially during the day. One minute roasting next freezing very regularly. She said rads have a knock on effect re temperature and hormones so she was not surprised re the flushes and said it should settle. I have to make sure I take plenty fluid as losing some with the sweats. I told her I started the letrozole today. My legs in particular are achy anyway post chemo and I have been told that the letrozole does this too. She said the achy limbs are a late effect of chemo which can last for months after. Some people think it is the tablets causing it when in fact it is the chemo so that was good to know. I mentioned about feeling so emotional. Instead of raising a glass that the treatment was done as someone said to me on Friday, I just wanted to cry. She said that is all totally NORMAL. She said I will be up and down during recovery and not to beat myself up about bad days. There is no timescale for recovery which sounds very much like the grieving process. She said if she had a pound for everyone who said they were more emotional post treatment than during she would be rich! As everyone says during treatment you just take it a day at a time and plough on as you just need to get through it. She told me about research done in the Netherlands which confirmed that emotions catch up with patients after the end of active treatment which is perfectly normal whereas it is the opposite in family/relatives. They are more anxious during treatment as they are watching us go through it and are then relieved at the end of it. So the science as they say (very common phrase being used by the politicians during Covid) has proven that I am not losing the plot because I am bubbling! Seriously though she did make me feel better and said to let the tears flow - better out than in! Good advice as I feel family members think I should be giving it party party right now! A girl locally I know who has been through it said she was the same post treatment - hamster cheeks, no eyebrows, no eyelashes, spotty skin, sore nails, achy legs, tired and tearful - ✔️ to all of them!
Anyway don’t mean to sound a misery guts. Feel better that it’s not just me so thought I would let everyone else know it’s ok to be feeling like this post treatment. If you are not, even better!
On a positive (thank goodness I hear you say!) my hair is coming back on my head. Think the Nioxin is working. Can still see quite a bit of scalp but not as much as before. The silver fluff is definitely growing!
Hope you get the rads later today as planned - fingers crossed for you. Great that your hair is coming back too, fab news.
Re eating think I need to rein in the chocolate bingeing. Enjoying too many sweets and have put on 2kgs post chemo so need to get a grip! Eating things I couldn’t for ages due to the indigestion so fizzy peaches, fruitellas, chocolate, chocolate and more chocolate getting a pounding. Going to turn into a 🐷. Oh dear 🙈.
Anyway off to tackle the massive ironing pile - had to rewash everything which had been drying outside as a neighbour put their fire pit on so everything was stinking of wood smoke 😡.
Love and hugs to all.
Hello everyone, I'm meant to be on my way to my first rads now. Had a call just before 8am to tell me to go in later as final sign off of the plan was needed.
Nice week away but as I took it as sick leave, I kind of felt like I was bunking off and felt a bit guilty! Lovely seeing my family and our besties. I didn't get emotional seeing people as I thought - my aunt did a bit. I got teary when my brother and mum asked about support from friends and ladies 'in similar positions'. Told them all about this wonderful thread and you!
Shattered though - we ate out with people everyday and some days 2 sets of people so all I wanted to do was sleep when we got back to the digs. I did chill in the sun under a parasol with SPF30 on a couple of times. I even had the concentration to finish a book I started post-surgery.
I was worried about how tired I am but... a decent night's kip at home and I wasn't nodding off yesterday and lasted til gone 8pm when I went upstairs to watch the last part of Time, and I'm wide awake this am.
I'm going to call my GPs later - not convinced my Onc has my Ibandronic acid and calcium/Vit D tabs on repeat prescription. As it wasn't requested in the letter that was sent - the Anastrozole was. I start them on Friday. 😟
Came home to a lovely box of goodies from Little Lifts. I think that Udder cream will be useful over the next few weeks. The sweets will - I'm getting that queer 'not really nauseous' feeling if I don't eat little and often. That's a pain as I am gradually shifting weight from sensible eating as I up the potassium-rich food.
Have a great week everyone. Hope you feel OK after your last chemo @Teagold and your daughter gets back on her feet soon. Just what you need - not!
Love and hugs 🤗
Thanks everyone for the lovely words about my treatment. Glad to say that bloods all ok yesterday and so that’s 16/16 officially ✅. I think I really identify with what you said about finishing rads @Kaz11 , I feel sort of nothing really which is partly “can’t quite believe it” or maybe “can’t quite believe I’ve just been through that”, but also as I don’t really know what my future treatment plan is so trying not to get too fired up in case I’m told I need more chemo of some kind after surgery.
The other thing that’s probably impacted how I feel about it all is that my poor younger daughter had a nasty fall at school on thurs and now in a leg brace and on crutches with a chipped bone and suspected torn ligament. She has to go back for various appointments next week. So, that’s just added an extra bit of worry and logistical complication not to mention horrible to see her in pain and hobbling but she’s being very brave.
@Kaz11 well done on finishing rads and completely understand everything you say about how you’re feeling now. I think this must be so common, that now is the time that we stop and think “whoa, what just happened”. I’ve spent most of my treatment so far trying NOT to think about what’s happened/what’s happening - just getting through each day as best I can. And on good days I didn’t want to dwell too much, and on less good days it was more about dealing with the physical than the emotional. Have you had any counselling offered? I’ve had one and trying to book another next week, I didn’t feel needed it earlier in but I do now. Also partly because increasingly find it so hard to really talk to friends about how I feel and what I’m thinking. As you’ve said before, there’s a sort of expectation that we will be punching the air and desperate to rush back to normal life rather than needing time to let head and heart catch up with it all and find ways to heal. By the way, in my view you deserve just as much 👏👏👏 as anyone else on that ward after what you’ve been through and how you’ve managed it.
@Gelbel hope you’ve had a lovely break?
@Rainbow70 how are you doing? Are the sfx from last treatment still dragging? I really hope things start to ease soon.
And finally, I have just noticed a few tiny sprouts of hair regrowth right on the top of my head!! Can’t believe it started to grow back whilst still on the EC, though the nurse yesterday said that’s quite normal. Weirdly, hair on top of head starting to grow back, eyebrows and eyelashes on the slide hour by hour! How does that work? Never mind, I’ll take it - it’s not much, but as the famous supermarket says “every little helps”!!! I’ve got no idea how to make my head look anything near normal, I figure best plan is to wait for more regrowth 🤞 then go pixie cut. My hubby keeps gently saying “you will need to get those straggly bits cut you know”. I guess he has to look at my head more than I do! 😂
Hope everyone is doing ok today and that whatever plans you have for the weekend involve lots of being kind to yourselves and hopefully lots of relaxation.
Hugs to all
@Teagold I hope you managed to get your last EC as planned today and you have planted that flag!
@Gelbel thanks re your good wishes for today and glad that you are enjoying your break. Nice to do something “normal” whatever that is these days! Am not looking forward to shaving again either! Decided to do the underarms ahead of rads starting - odd though it may sound was quite enjoying the novelty of it being there as it meant hair is growing back.
Well I had final rads today and tbh I feel - well nothing really. No ceremonial end of treatment like chemo. It was just here’s a post rads leaflet, I’ll get a follow up call re any sfx on Monday and all the best, cheerio. Felt like a bit of an anticlimax. As I said no time to build up rapport with the nurses there as you are in and out quickly where chemo is the long haul as we know so a different relationship altogether with those nurses. Think there is a bell to ring at the end of treatment. I heard someone ringing it today and then there was clapping. I didn’t know where the bell was but would have felt a bit of a fraud only being there for 5 days when the people before and after me that I have seen each day have to go every weekday for 5 and 6 weeks albeit they had different cancers.
I was actually sitting in bed last night thinking has this all really happened to me? Just feels kind of surreal though all I need to do is look down or in the mirror to see that it most definitely has. I remember the Someone Like Me lady saying someone asked her how she would celebrate post treatment and she said all she wanted to do was lie down. I kind of feel the same.
Was told today that it is ok to use E45 or Aveeno on the treated area (anything unperfumed) that is an emollient so what I was told by the other nurse was wrong.
@Rainbow70 you asked re the sfx. They said today I have some of the telltale rads sunburn pinky redness so just to use the cream on it but they thought it wasn’t too bad. It has felt a bit itchy too. Also have itchiness on the other side too but that’s down to the dressing where the portacath was removed so will put cream on there too. Also have felt pretty tired last few days. Don’t know if that’s down to the treatment/travelling or a combination but have gone to bed after dinner the last few nights and watched things on my ipad but at least my body was resting. It felt a different kind of tiredness to chemo, almost more a sleepy tiredness if that makes sense.
Still have chemo sfx too. Eyebrows have come out more since chemo so barely have anything there now and no eyelashes either so my face looks so bare. Still get a strange taste in my mouth too after certain foods. Legs have not been so achy this week on rads but have been more tired so maybe going to bed early has helped but not sure. Hair has also disappeared in other areas I’d rather not talk about if you get my drift but I know it’s still possible to shed hair post chemo/rads. Thankfully it seems to be filling up a bit more on my head but long way to go before it is even half decent. Also still have tingling in my feet though my nails are not sore and sensitive now. They are just half normal colour/half yellowish which will grow out. And of course I still have spotty skin.
Will need to think seriously now about when I return to work before my catch up with my line manager at the end of next week. Think I’ll be calling the breast cancer nurse to get a letter from the onco.
So am glad rads now over but not feeling the elation I thought I would. Still a bit of recovery to do before I could party! Next stop bone strengthening in a few weeks and starting letrasole on Monday which am nervous about too.
Love and hugs everyone
Had a radiographer call me today re the process, sfx etc of my rads that start Monday. She said I can use E45, Dr Organics vitamin E, unscented Aveeno cream on rads site. Just what I've been using post surgery.
My (mattress induced) seroma has gone down, so if I've changed out of the tolerances they will have to recalibrate the treatment. It will only be delayed by a day or two as they will remeasure on Monday. Fingers crossed.
Enjoying our time away. Will update you when we get home. Although I am not impressed that I'm going to have to start shaving my legs again. 😠
Love and hugs to everyone. 🤗
@Kaz11 will be interesting to see how your skin reacts to the radiotherapy . Have you experienced any different side effects yet from the radiotherapy yet on top of the paclitaxal side effects you are also still dealing with? it does sound like a very quick turn around with the radiotherapy, thanks for explaining how it all works as really helps with what to expect .
it’s interesting your oncologist mentioned been immunosuppressed for 3 months , and nurse mentioning not to plan phased return until after a month after rads . We don’t know how long side effects are going to last do we . I’m going to bear that in mind when discuss planning work with manager …. Carry on wfh for at least another 3 months . This week I’ve still got cardboard taste to mouth , also feet / hands tingling more this week despite not having treatment Monday . Still having joint ache / burning to upper half of body but it’s not as much now comes in waves . The nurse on the unit said chemo keeps on working for a while after finishing depending on which chemo you have ! Has anyone been told this ?
Sending love to everyone
Sorry @Teagold forgot to say fingers crossed you get your last EC on Friday. That will be a great milestone. That was by far the worst part for me. The taxol wasn’t great but it was better than the EC so that would be a massive tick for you to have it over with.
That’s me home after completing number 3 of 5 radiotherapy sessions.
I was very nervous on Monday for the first one as didn’t know what to expect and different hospital so needless to say was desperate for the loo when I arrived despite not drinking much before I left! Am also using the local cancer support group’s transport service which is the best way to get to this hospital where parking is awful, but get a bit anxious about it each day as a different driver each time and have to make polite conversation. They have all been nice though and are going a more direct way which is quicker than the first time I had my planning meeting and it felt like forever to get there.
The radiotherapy itself has been very quick. They line you up on the bed thing and talk lots of numbers to each other. I seem to get an xray each time then the machine moves round. It is a big circular device so it moves over me before it takes its position on my left to point the rays at my right side. It is nowhere near my face so I don’t feel claustrophobic like being in a scanner. It’s over in a couple of minutes then I get dressed and go. Feels very production line-esque so don’t get the chance to build up any kind of rapport with the radiographers/nurses. It’s pretty much confirm DOB and address, kit off, lie on the hard bed, they shuffle you into position with hands over head, machines do the needful then it’s cheerio as they wipe down the bed for the next person. You don’t feel anything but it will be interesting to see if there is any skin reaction by Friday.
Like you @Rainbow70 I now have my meds too so will start the letrasole on Monday. Onco said to start 3-4 weeks after end of chemo. Tomorrow will be 3 weeks so thought I may as well start at the beginning of the week on Monday.
Felt tired today but not sure if it is rads related, chemo related or just general. Been emotional too. Quite teary the past few days on and off or totes emosh as the young ones say! Think it’s everything coming out now. Didn’t cry much after op or chemo. Think i just felt I had to get through it but now things are coming to an end maybe have more time to reflect on what I’ve been through so sometimes it’s like a tap and the tears flow big time.
@Rainbow70 my rads planning meeting was the day before my last chemo and the rads started on Monday which was 2 and a half weeks after my chemo finished so there was a bit of a gap between the two treatments.
@Teagold am so the same re the puffy face in addition to the spots. As we keep saying it’s the gift which keeps on giving. As if it’s not bad enough losing eyelashes and eyebrows on top of the main hair loss now my skin is rebelling too. When am I ever going to look anything like my old self - I miss her! 😢
I can imagine how tiring all the zoom meetings must be. Like you I am a bit concerned about work in the long term as my job involves a bit of travelling around at times and onco says I have not to do this for 6 months so not sure how well that will go down. Think I will need to get a letter from her to say so. She also said my immune system could still be compromised for up to 3 months so I think I may have to wfh during that time. Will need to think very soon about when I start a phased return. Nurse said I should not go back until a month after rads. It’s difficult to know what’s for the best as some days am more tired than others.
Anyway think I’ve been banging on long enough in this post!
love and hugs
Hi @Teagold Thankyou for your thoughts, I don’t think it’s sunk in yet that I planted the flag !. With the weekly pax towards the end I felt like I didn’t really have any days that I felt good . Fatigued / achy and awful taste in mouth. I have an ulcer on my tongue at present 🙄 So was relieved I wasn’t getting topped up on Monday ! Instead on Monday we went for a lovely walk in the afternoon also had a suprise delivery from interflora 💕which made me cry !
I think we are all doing amazing the fact that we are managing to do a little bit of work when we feel up to it . Your right it is very tiring and some days we just don’t know what our emotions are going to be like do we . I use the same as @Kaz11 ka brow from benefit for brows it is good .
wow last EC in Friday , when will you get your bloods done ? I felt the same worrying about bloods results. How have you been feeling since last EC . After my bilateral mamoplasty they gave me a sick note for 4 weeks on the ward . Had drains removed a few days after and then a wound check week later . Was much better when drains were removed as had one each side , I had a bag across my body to place them in which really helped.
@Kaz11 how are you feeling with radiotherapy ? I wonder how long the aches will last ? I’ve just had a text to say my Tamoxifen prescription will be ready bet end of the week . I’m getting a blood test done on Monday to check my eostrogen levels . I’ve asked for the blood test as want to know my baseline level before start it . I’m going to start it next week. I have my radiotherapy appointment next Thursday which will be two weeks after finishing chemo ! Consultant said he wanted me to have 4 weeks to recover from chemo , which only leaves two weeks from appt not sure how soon I’ll be starting radio ?
Love to everyone -looks a lovely sunny day
@Rainbow70 congrats to you on planting your flag! How have you been since last treatment?
@Kaz11 - been thinking of you, how have the first couple of rads sessions been? Re skin issues - v sympathetic as at various points during chemo I’ve had nasty breakouts so as if the hair loss and puffy face wasn’t enough to get me down along came spots! I was told hormone related as hormones likely to be all over the place but tbh it “felt” more like a reaction to the toxicity. I hope yours clears up soon. Thanks for eyebrow pencil tips - I’m off to Superdrug later to see what I can find but failing that will do some online browsing. And thanks again for your cheering words about my “moaning” - made me feel better, you always know just the right thing to say! 🤗
It’s interesting to see what everyone is doing re work. I’ve been dipping in and out just keeping up on a couple of projects and keeping in touch. It’s by no means a formal arrangement but I reckon I’ve probably done half a day per week since diagnosis - sometimes more. Haven’t had the energy to do more and luckily they’ve been very supportive. So much of my job involves video meetings (everyone still mostly wfh) and I’ve found them really tiring - maybe the steroids making me extra sensitive to light/sound, so even doing one or two meetings has been quite sapping. I still feel bad that I’m not doing more and worry about how it might impact my role long term. I’m assuming I’ll need to be completely out of action post-surgery and then will have to see what rads plan is.
Last EC due on Friday. I’m not letting myself believe it will happen, convinced that my bloods won’t be up to it and it’ll get delayed. But also need to get organised and get something for all the lovely nurses as a thank you just in case it does go ahead! Will head down to M&S and see if I can get some nice tins of biccies and chocolate to put together a little goodie box.
Hope everyone is doing ok this week.
What a great shout re the sunglasses for hiding the lack of brows/eyelashes will definitely be doing that now - thank you!
Glad it’s not just me re the breakouts. I thought it may actually be wearing the mask which was making it worse but am sure it is hormone related as I had it before. With me it tends to come out under my nose and on my chin. That’s where I had it pre BC although it looks worse now. I got cream from the doc before but she said it would never get rid of it completely which was the case. The cream cleared it up at the time but then it kept coming back. Had no issues with breakouts in my teens/20s but now have in my 50s - mad! 🙈
Re the aches it is mainly my legs. Feel like an old woman when I get out of bed as very stiff but better when I get moving. Pre BC it was my hip joints which ached but now definitely the legs!
love and hugs
Hi @Kaz11 I imagine the travelling every afternoon will add to your tiredness then . I’m with you also regarding breakouts to the face . Grateful to be wearing the mask outdoors to be honest to hide it , even better when can wear sunglasses which hide bare eyes / brows 🙄. Do you just have aches to your Iegs or anywhere else ? My legs aren’t to bad it’s just the top of my body / joints that ache !
will let you know how I get on doing the extra morning , I usually do around 3 hrs each morning .
lots of love
Yes my appointments are the same time in the afternoon each day this week so I am going to aim to do an hour or so of work each morning before I go as it is nearly an hours journey for me to the hospital. So pretty much the whole afternoon is gone between the journeys and treatment. I have been splitting the 7 hours of my working day over several days so have not had a full day at my computer yet. That’s interesting though that you have been doing 3 mornings. Let me know how you get on with the extra one.
The nurse doing the treatment today said it would likely be the end of the week I will notice any reaction to the radiotherapy so will have to wait and see. I am just there for 5 sessions Monday-Friday this week.
Not sure if it is the hormones (or lack of) but having had clear skin on my face albeit dry during chemo, I now have breakouts on my face like I used to before BC but more extensive so I now look like I have teenage acne. Happy days!!!
love and hugs to everyone.
(Spotty) Kaz11 x
Hi everyone hope you are all doing ok
well done @Kaz11 first radiotherapy completed and thanks for the heads up about the cream . Are you appointments around the same time each day ? Regarding work during weekly treatment I worked three mornings , it was my choice to do an extra morning this week so will see how it goes . My usual hours are full time , my manager and Dr I work with have been very supportive and are grateful I am still wanting to do some work. However some mornings I have had to really push my self to log on. I guess we will have to see what side effects radiotherapy brings us ! Are you still working this week during your radiotherapy ?
Sending love to everyone
Just wanted to give you all a heads up re radiotherapy. I have been using E45 on my scar since surgery as I was advised. I didn’t put any on today as the booklet I got from the hospital about radiotherapy treatment said not to use lotions of creams. I mentioned this to the nurse that I had not used any cream today and she advised against using E45 during radiotherapy treatment. Instead she gave me a cream called Zerobase to use.
Anyway just wanted to let you know so if you are getting radiotherapy don’t stock up on E45 to use during it as I was advised today that it’s counterproductive. Hope that helps.
Number one session done today, 4 to go.
Take care everyone.
@Rainbow70 well done you on completing the chemo and planting that flag - go you! That’s fantastic.
Totally get the cumulative effects of all the chemo though, that’s exactly how I felt - jnitial elation about the chemo being over then feeling gubbed as a result of the sfx!
I am interested what you say about working 4 mornings. Have you done that throughout or is it part of a phased return? I have been doing one day a week but have been splitting the hours over several days. Working on non time sensitive stuff so there is no pressure but the return to work chat is looming and not quite sure the best thing to do re a phased return as don’t know how I will feel. Onco and nurses say only I know how I am feeling but am just not sure how long the phased return should be and then pay (or the lack of) will come into it too as my 6 months is coming to an end soon and after that the pay stops. Would be good to know if anyone else has done/is doing a phased return. One nurse said I should wait for a month after rads before going back on a phased return.
I was back at M&S today for some goodies but nowhere else so far. Covid cases increasing a lot in my area particularly in the schools. Now getting paranoid about friends coming to the house even outside in case they have been out and about at restaurants etc which a lot of them have. If they then get a track and trace that would affect me if they have visited me prior and I just want to get this treatment done now. Only a couple of my friends seem to think about what they have done/where they have been before thinking about visiting.
@Teagold am so glad the appointment with your surgeon went well. Makes all the difference in the world when they have a good bedside manner. It instantly makes you feel more comfortable as opposed to the brusque approach you sometimes get. They do this day in and day out but we don’t so it’s good when they are so nice. I felt like that with my surgeon too. Just felt we gelled straight away and he explained things so well.
Don’t ever apologise for moaning! We all understand and that’s what’s so good about sharing on this forum as we all get it. Think about what we are all going through. You have every right to moan. We are all on an emotional rollercoaster and it’s hard. I feel like I go up and down like a yo-yo. One day I am fine and the next I am so tired, achy legs and just want to cry so remember you are not alone in how you are feeling. As I think I said one of the nurses said not to give myself a hard time for feeling upset as we have all had a kicking both physically and emotionally.
Re eyebrows I use Benefit KA-BROW. It is like a gel eyeliner consistency and it comes with its own wee brush in the top of the pot so you can build up the colour and have it as light or as dark as you want. It’s easy to apply.
Anyway tiredness kicking in as usual so am off to bed.
love and hugs
Well I planted the flag at the top of the mountain last Monday … Thank you all for your kind wishes . Hubby came to meet me from the unit so was nice to walk out together . Since monday I’ve felt so tired and achy . Definitely feeling the cumulative effect of the weekly treatments. Worked Thursday / Friday morning last week and doing four mornings this week so will see how it goes ! Have a weeks annual leave w.c 28th June so have booked a couple of nights away .
@Kaz11 well done having port removed and hope tomorrrow goes ok for your first radiotherapy. Have you managed to get out any more to the shops ?
@Teagold so pleased your appointment went well and hopefully you will get date through . Not long to go until your last chemo . Ive just been using benefit eye brow powder on my non existent brows , have one eyelash on each eye lid! Grateful to wear sunglasses to hide bare eyes ! . You don’t need to feel bad for moaning we are all going through this together.
@Gelbel enjoy your break away!
sam have you had your break away yet ?
@hopeful1974 hope you are doing ok on your new treatment regime. @Leftygirl hope you are doing ok ?
love to everyone
Aw thanks @Kaz11 / @Gelbel - it really does make a difference to hear from you and know that someone else is going through the same thing. I think there’s a window each cycle where I feel particularly downbeat and it’s probably one of the side effects, I feel bad for moaning and actually now it’s passing off a bit I’ve decided that I need to experiment a bit more with makeup and headscarves etc which I haven’t done much of as I’ve been hiding under baseball caps and hardly seeing anyone. I’m hoping that in the time between chemo and surgery I might get out a bit more so feels like the right time. Any suggestions for good eyebrow pencils especially welcome! I know there are some further down the thread but seems like a long time ago.
My appointment with surgeon was good - she is LOVELY. When she got her tape measure out on me and then showed me photos of her past work it reminded me of talking to the builder who did our kitchen a few years back 😂 - but in a strangely calming and reassuring way, as she made me feel like she knows exactly what she’s doing and it’s all in a day’s work etc. I haven’t got a date yet but likely end July or very early August. She also found the right encouraging words about how I’ve handled chemo which made me feel better, and the breast nurse is really lovely to and has given me some info about bras etc so I feel like I’m starting to get my head round it all a bit more now. So all in all, came away feeling good about it.
Hope everyone having a lovely weekend, @Gelbel hope you have an amazing break.
Silver fluff! 🤣🤣🤣 That's me - it's getting greyer and it's very slightly curling around where my ears join my head. 😲 Some days I could crawl up to bed at 19:00 - I force myself to last to 20:00.
Away tomorrow. 🤩👏
Love and hugs to you all. 🤗