@hopeful1974 I am so sorry to hear your last chemo was postponed. I can only imagine how you would have felt being psyched up for it only for it not to happen. I remember the relief (not sure that’s the correct word) every time I got my blood results back knowing I was getting the chemo. Hardly something you look forward to but I just didn’t want it delayed so sending big hugs. Hopefully your injections will have worked and you can finally plant that flag at the summit. Both yourself and @Leftygurl are an inspiration climbing Snowdon that is amazing! Fantastic achievements both of you and the C25K too absolutely brilliant.
@Leftygurl I totally get the anxiety of returning to the unit for your second bone strengthener. I have only had one but due my second in January. I remember getting the first one post chemo. In a way I was actually looking forward to seeing the nurses again as they had been so good to me and all said how well I had done with the chemo etc. However I have to be honest (think this is going to sound a bit pathetic) that I actually felt a bit deflated as they were so busy with new chemo patients that I felt I wasn’t important any more. I know that sounds like I am needy and wanted attention but it wasn’t like that. They just couldn’t give me the same amount of time as I’d had during chemo as there were people on the start of their chemo journey who needed them more than I did that day. My Zometa wasn’t going to take as long as the chemo to infuse so they popped in and out but I know they felt bad not spending too much time with me.
Also with you re working from home. I am trying to tell myself that the advantages outweigh the disadvantages but I do find it very isolating and monotonous. I just need to remember that it’s better in winter particularly not to be doing an hours journey there and back. I wonder now how I ever managed it before.
Am so sorry that you had such an awful time with the portacath which should never have happened. You must be so strong to have dealt with all that. Hopefully the plastic surgeon can help you too. Big hugs to you.
I am starting to get anxious about my check up on 2nd November as I know I have another procedure sooner or later to remove the port from my implant and possibly tweak the constricted area caused by radiotherapy. Another op no matter how small seemed so far away after my mastectomy last December but now it’s getting nearer I am feeling the dread. As we have said so many times before people don’t get it and no matter what I say to friends they just all think I’m through it now. That’s why the support of all you lovely ladies means so much.
Love and hugs to everyone.
@Leftygurl I last climbed Snowdon when I was 27 and I am now 47 and have had cancer treatment so can’t imagine how tough it was - an amazing achievement! I can understand your anxiety about going back to hospital for the injections. I am ok now but having been away from the chemo ward for a few months when I was having my surgery, I had some anxiety when I went back, but I’m used to it again now. xxx
Wow! well done on doing the C25k while on chemo still, I don’t think I could have done it at that time! So you do know as you have climbed Snowdon before how exhausting it is, and because of parking a large van we went up the Rhyd-Ddu path too, it was the coming down which was the worst for me, I really was so exhausted!! 😩😂
So sorry to hear that your Chemo has been delayed by a week, I had that happen for a different reason and it’s such a disappointment but at least they are looking after you and you will feel better than you would have done afterwards, hang in there 😊
I went for my second infusion of Zoledronic acid for strengthening bones yesterday. I thought it would be totally fine, a chance to catch up with the nurses in the unit etc but a bit of a downer as there were a few new nurses and the others I don’t think they recognised me with hair! And I had the same feeling of panic and anxiety when I sat down in the chair. For a while I hated being there then I did some deep breathing and read my book and I felt better but I couldn’t wait to get out of there! Only every six months so should be able to cope.
Hows everyone doing?
love to all 💕💕
@CrazyCatLady @Kaz11 @Teagold @Leftygurl Morning everyone. So my final chemo was meant to be today but as usual my neutrophils are not high enough, so three days of g-csf injections for me and try again next week. My neutrophils always go sky high with the g-csf so it should be fine. A bit annoying, but not unexpected.
On the plus side, I was told on Wednesday that I am not eligible for a scan at this point as they know it can’t have spread and that I am stage 1B. I hadn’t realised that so it is quite a relief!
I hope you all have a lovely day. xxx
@Leftygurl I am pleased to hear your wound doesn’t need dressing any more and that you are finally in good hands, but so sorry that you had to endure the whole thing in the first place. Your climbing Snowdon sounds amazing and is something I want to do too with my family over the next year. My husband proposed to me on the top of it (a long time ago now!) so it has special significance for us. I too am doing the Couch to 5K and as I have felt ok on the latest chemo, I have been progressing with it on my better weeks. I like the structure it gives me. I also find it helps me hugely mentally. I have also just signed up to the Safefit trial. I don’t know if I will get on it as it is very popular but it sounds really good, with online 1 to 1 sessions on exercise, nutrition and talking about what I am going through.
I hope you have a good day and sending love to everyone else. xxx
Well in a way yes, it’s not a wound that I need any dressing on anymore as it’s healed now but it’s still a hole. The plastic surgeon that I see is very pleased with my progress but now I just need to let things settle down as the next step now is plastic surgery but he doesn’t want to do anything too soon as there’s a danger that the skin might break down if messed about with too soon so my next appointment is at the beginning of December. I’m lucky that I was referred to someone who knew what they were doing in regards to getting it to heal. I’m happy that it’s got to this stage but I have to be conscious about what I wear all the time as it’s really ugly.
In other news at least all my treatment has finished now. Chemotherapy finished finally in July, rads finished by the middle of August and I’m physically feeling pretty good. It was probably too soon but as we were there on holiday in September we climbed Snowdon and not the easiest route either! I was literally on my knees by the end but I’m glad I have done it. I’m also doing the couch to 5k too, I’m on my last run of week 3 tomorrow! It’s really hard though but I’m determined to do it 😊
I know one thing, I’m sick of working at home! It’s really getting me down and my bosses aren’t helping dragging their feet with occy health. It’s so lonely at home!
I want to thank everyone on this wonderful forum for sharing and it helps knowing I’m not the only one with woes, not that I want you to! I wish you all well 😊
Just to let you know I’m still here, and I do read everyone’s posts with interest.
it takes so much unraveling of what everyone has been through to comment on myself but I will try, now & again.
Love to you all
Oh wow @hopeful1974 - great news on last chemo on Friday, whoop-whoop!! Well done and hope the sfx are as few as possible for this last one xx
You'll certainly be having regular heart MRIs due to the Phesgo and I'm now getting my jabs done at home by an NHS outsourced service which is brilliant, so may be worth asking if this can be done with your trust. Had to go to the chemo unit for my first 2 jabs to check for any reactions, so was in for around 2-3 hours for the first one and then around 1.5 hours for the second one. Certainly saves on the hassle of trying to find a parking space!
I would think you should have some sort of scan once chemo's finished to check on how it's worked and to make sure no residual left. Like @Kaz11 suggested, take a notebook and write down all your questions to ask the oncologist....for me if it's not written down, then the brain forgets it instantly.
Good luck and well done xx
Love Sam xx
Way to go @hopeful1974! That is such a milestone reaching your last chemo. Well done you! Great to tick that off the list and as others have said it’s your turn to stick the flag on the summit of that mountain you have climbed. Be very proud of yourself. Good luck with your oncologist appointment. I take a notebook with me to every appointment. Loads of questions and I write down all the answers so I can refer back to it later. Brain fog still there in my case so another reason to keep notes!
Hi lovely ladies,
I have loved reading all your posts. I think there is too much for me to reply to but I love that you all seem to be on the same wavelength and are so supportive of each other.
I have my final chemo on Friday and I cannot wait! I’ll then be on the Phesgo injections until June next year. I have a meeting with my oncologist on Wednesday and have so many questions for him as I am worried I won’t get to see him again after that! In particular, I want to ask him if I will get a scan at some point as I have never had one and I need to know if the cancer has spread (it was in one lymph node).
Sending love to you all. You always inspire and reassure me when I read your posts. Siân xxx
Good afternoon everyone
As always the support on here is priceless and I appreciate all your lovely comments after my last post. You just all get it when sadly others so don’t.
@CrazyCatLady am so sorry to hear about your issues with radiotherapy. That must have been awful having to be poked and prodded for such a long time while they tried to get you into position and as for the disappearing tattoos they obviously didn’t do them properly first time around. So unfair you had to get them redone. Everyone told me they didn’t hurt but I found them quite sore and considering how many other jabs etc we have been put through in this whole treatment process that’s saying something. Fingers crossed the next session is smooth.
I hope you also get your financial support sorted and well done for taking the extra time off. As you say we need to take time to recover. I don’t get paid unless I work FT as have used up all my sick leave so feel I don’t have much choice but trying to wfh as much as possible. Was in the office last week one day but had to lie down when I came home as was shattered.
Let me know how you get on when you start Tamoxifen. It was mentioned about me changing to that potentially. Also great news re your daughter’s appointments and your CBT sessions too which will hopefully help you both.
@Teagold totally get where you are coming from re the tastebuds. I had a glass of Coca-Cola when I was out for lunch last week and it tasted so sweet I could barely drink it. Think I am so used to water and squash these days. I have never liked diet fizzy drinks as the artificial sweeteners leave an awful after taste in my mouth. I did do a lateral flow to check re other “c” word as the coleslaw I had also tasted salty and I wondered about the change of taste but the test was negative.
Re the hair comment you will not believe but the woman actually does the admin for the HR department! Will take on board @CrazyCatLady that I do not have this hairstyle out of choice. I know friends mean well when they say I suit it as they flick their shoulder length tresses but there is no way any of them would choose to have what I have now. It’s getting curlier so can’t do anything with it. It’s growing out the way instead of down. So much for my sleek straight Linda Evangelista-esque style by Christmas!
@Teagold I am still getting my reflexology sessions every few weeks which are great and also get some reassurance as the therapist is from the hospital. Going to take a half day round my next appointment as going back up to my desk after the session kind of defeats the purpose. Also booked a spa day for the start of December which I am so looking forward to as love the pampering. Also have tickets for a concert then too but am getting nervous about being in such a big crowd.
As you say the nearer it gets to my yearly check everything is flooding back from last year and can’t stop thinking about it and how scared I was. It’s like returning to the scene of the crime so to speak. Totally with you that it feels more terrifying this time. The docs are keen for me to have the symmetrical surgery so will discuss at my appointment. Again can’t stop thinking about it and don’t appreciate people’s comments about it being a cosmetic procedure I am considering as if I am going for a boob job a la Jordan. Wonder how they would feel seeing a very lopsided version of themselves in the mirror. Easy for them to pass judgement.
Well done on the C25K and your 20k walk that’s fab. I am exercising but not as much as I would like. The stiff joints etc hold me back a bit as my body can’t do what it used to which is hard to take. I shuffle too and totally get your anxiety around the other lump and biopsies. I was up to high doh too when I discovered my wee lump. Fingers crossed all ok and have a great holiday. I so love the calmness of the sea too.
@Rainbow70 well done you re your swim that’s fantastic.
I can totally relate re not going out without a wig as I kept things pretty private too. Anyone I know who isn’t aware of my diagnosis would know something had happened seeing my hair like this. Have only gone out a couple of times without it knowing I would not come across anyone I knew where I was going.
I am hoping to take some annual leave in December. I am tired but it’s a bit of a catch 22 for me as working keeps me busy and my mind occupied whereas if I have too much time doing nothing and thinking my anxiety increases especially as you say when we read all this stuff about secondaries. It’s freaking me out as that’s all I’m seeing at the moment and then makes me question my diagnosis and wonder if it’s inevitable that it will come back. I know that’s negative thinking but will speak to the doc about it at my appointment as my mind is racing with it all at the moment.
I am still taking the anti inflammatories although they are not doing much for me. Let me know how you are getting on with the amitryptiline as my GP mentioned this to me as an option too. Thought diffusion sounds interesting so will need to look it up and I must try and fit in yoga at some point to see if it helps too. Trying to juggle everything now I am back working FT is not easy.
Also no word of flu jab or covid booster yet. GP’s surgery only doing over 80s and housebound patients. I would have thought cancer patients should be a priority but apparently not. I’ll get a letter from my health board to go to a mass vaccination centre apparently.
Anyway love and hugs to all. Hope @Gelbel you are still enjoying your holiday.
Good morning everyone xx
@Rainbow70 wow!! Go you on a sunrise swim in Lake Windemere....much, much braver than me! I just feel cold thinking about being in that water. Sounds like you had a wonderful time away and hope this has recharged your batteries xx
I know what you mean about the tiredness even doing p-t WFH. I was only doing around 4 hours for 3 days while we were still in lockdown and even though it was only 'screen' work, it was mentally draining and I often ended up with a headache most days. My plan is (hopefully) to do a phased return of 2 hours x 2 days for first couple of weeks and then increase it gradually up to 4 hours x 3 days (so max of 12 hour week) and keep it like that until the end of March and review from there. I'm in the process of applying for ESA as I think my SSP will run out by end of January so I think I should get the 4-9 hrs/week paid and then topped up with SSP but got to speak to my boss about this. I've also just submitted my PIP application as my boss thinks I should qualify due to my ongoing issues and now with my MH diagnosis. Will wait and see, but I'm not holding my breath as I know it'll take a while before I even get an assessment.
Can you guess who had problems with their rads already??? LOL - yep, can only happen to me 🙂 So last Wednesday should have been no. 1 rads, but they couldn't align my measurements, despite trying for over an hour and a half!! My back, neck, shoulders and legs were completely shot!! So in again on Thursday and yet another 1+ hours on the table but they did eventually manage to get me zapped. They also confirmed that my side tattoos had actually disappeared....and I did say I told them so 🙂 The radiologist I called and told them a few weeks before actually said it was very unusual for them to disappear, and they would definitely still be there but just too small to see - so at least she now believes me! End result is that I got 2 more tattoos done on Thursday....and I think they did them a bit deeper as they were proper stingers! And on Friday there was yet more measuring and during the zapping they had to attach some wires to the areas where the tattoos are - but fortunately (!) only 50 mins on the table of torture haha xx
So today will be 3/5 and I'm gonna top up on some paracetamol before each session to hopefully mean my back can survive 3 more zaps. So far though, all well with my twins and just feel a little warm, but not yet hot and I'm remembering to lather up with my moisturiser several times a day.
As for the tamoxifen, I haven't actually started them yet as I only got the prescription on the day I started my rads....pfft! The script had been help up for 2 weeks in radiology and then took another week to get the GP to send it over to the pharmacy. So now I'm contemplating not starting them until about 2 weeks after my radiotherapy so I can deal with any sfx from this, before starting on the tamoxifen.
I've been so very lazy over the last few weeks and have got to motivate myself to do even just a little bit around the house. Will try to get the ironing done today so that can be one thing off my list. Hoping I can do 1-2 hours of light housework in the coming week or so just so I can get a bit more caught up before the rads fatigue hits. But I know I've got to pace myself or I'll be completely wiped out and then I'm back to square one.
@Teagold oh my goodness I'm so sorry you are going through the anxiety regarding the possible need for further biopsies. I can imagine how much you are worrying - but like you say, if your team aren't too worried, I hope this eases your mind a little....but worrying these days is what we all do. Fingers and toes well and truly crossed for you that it's nothing sinister and perhaps just scar tissue or fat necrosis xx
Hope you are having a most wonderful time on your South Coast holiday (despite the weather)! It is always so good to hear and smell the sea xx
@Gelbel hope you too had a most wonderful holiday and good luck for your upcoming appointment xx
Off for my shower now before I get started for the day...just got to dislodge the very contended and purring black fluffy mog that has now settled on my lap lol 🙂
Love Sam xx
(and Zephyr the cat!) xx
So nice to catch up with everyone’s posts this morning. Where to start?!
@Gelbel brilliant that you’ve finally got that appointment sorted and I really hope that your holiday is/has been amazing (if you’re reading this afterwards). I was also encouraged by the wine story - I had one small glass of red wine last Friday and yuck. A beer went down reasonably well last night. Don’t get me wrong I don’t want to dive back into the kind of drinking I was used to before cancer and my oncologist has said “consider alcohol a TREAT!” - but the thought of not being able to enjoy a nice glass of wine again was a bit depressing so hopefully the taste will come back.
@CrazyCatLady how are you getting on with rads? My mum suggested I use cabbage leaves too as a friend of hers had done it - I did try it a few times but then got a bit worried thinking would it still do any good as I don’t really have breast tissue any more so I asked the rads team and this lovely young girl looked at me like I was bonkers - said she’d never heard of the cabbage leaf thing! I was really surprised because it was all the rage when I was breastfeeding many centuries ago… anyway, I didn’t know that about the enzymes. I hope your skin is holding up ok. And it’s great news about your daughters appointments and your CBT - well done for sorting that out. I’m glad to hear you are taking time off work for longer - I think now is when we really need to try and focus on catching our breath, so to speak, so anything we can do to help that has to be a good thing.
@Kaz11 - first of all, I literally want you to name and shame the person who said that to you about your hair so that I can come up there and give them a piece of my mind. It’s astonishing what crap people let come out of their mouths. Can only hope they went home afterwards and felt mortified by it. I admire you so much for staying composed - there’s probably nothing to be gained from trying to address it directly with somebody so thoughtless. Can completely understand how exhausted you must feel working FT now - especially events; I don’t work in events directly but my team runs events and client hospitality and it’s completely full on. Are you still seeing your reflexologist or have any other kind of pampering stuff to help with relaxing? Also, big hugs as you approach the anniversary of your diagnosis. Lately I find I’ve been reliving the day of my diagnosis and find it more upsetting and terrifying that it seemed it actually was at the time - I think it’s just another sign of how much shock I was in - so I can imagine that as the day approaches you’ll be turning over the events in your mind. Do you have anything nice or distracting planned around the time? That can sometimes be helpful. I can completely understand you wanting to think about surgery for symmetry but being so anxious. Are you going to talk to your doc about it? Did they say it was something they could do? I had bilateral mx - thought it would be traumatic seeing my new boobs but I think having them look like “a pair” really helped and now I love them. Oh - and finally - NEVER apologise as you’re not moaning - ok??!
@Rainbow70 it was lovely to hear about your holiday and sunrise swim - go you!! Windermere is so lovely, I grew up quite close to the Lakes but haven’t been for years. Would love to go and take my girls to see it, maybe next year. I’m still going with the C25K - it got a bit derailed with having covid in the house but I’m on week 3 now and also loving the Sarah Millican voiceover.
So, anxious times for me as I mentioned I’d a little lump on one of my implants that I thought I should get checked out. Went back last Friday - they think it’s fat necrosis/oil cyst (same thing?) but the process of having it felt, then the scan, and all the same places and people as my original diagnosis, just completely battered me. I was shaking like a leaf on the scan couch. The lovely scan doctor said the only way to be 100% sure was to biopsy - I couldn’t believe I was being told about biopsies again so soon. My surgeon then came in and looked at the screen and said let’s leave it four weeks - go home and stop fiddling with it (yes I have been fiddling with it a bit) and we’ll rescan in a month. Didn’t want needles being stuck in me so soon after radiotherapy. She said she wasn’t especially worried and I’ve seen my radiotherapy doc since and he said the same. But of course there’s a piece of my mind that can very easily spiral thinking it might turn out to be something more serious. I’ve been trying very hard to tell myself that if they aren’t particularly worried then I shouldn’t be either.
Aside from that I’ve been trying to stay busy and active, lots of long walks but really notice the aches and pains in back and hips - and I’m not taking any meds at the moment so nothing to blame it on! Like you said @CrazyCatLady I’ve been told it will take a good year to feel like my normal self. I’m very impatient and get frustrated when I can’t do things I used to do, or get tired, or feel achey - I catch myself sometimes shuffling like an old woman and think what the hell has happened to me! Then I remind myself that I’m 11 weeks post surgery and three weeks post rads and in the grand scheme of things it’s still really early days. And maybe I have been pushing it a bit on the walks - last Monday I did about 20km, not intentionally, but certainly felt it the next day!
Anyway, by some miracle it looks like we actually will get away for our holiday - today! Only off to the south coast for a week nothing too glamorous but I just can’t wait as we haven’t been away all year. It looked a bit dicey once the covid hit us and we were on tenterhooks hoping nobody else in the house got it as that would have scuppered our plans but thankfully everyone seems ok so now I have to remember where we keep the suitcases and start packing! Don’t care that it’s going to rain all week - just can’t wait to see the sea.
Big hugs to you all and I hope your weekends are relaxing, enjoyable and only include thoughtful people who make us all feel better about ourselves.
@Teagold sorry about the typos on previous post !!had my specs on too
well done on finishing the radiotherapy , how are you feeling ? Hope your daughter has recovered from Covid . How’s the couch to 5k going . Not started it yet but have done lots of walks.
sending love 🌈xx
Did type a post last night, but for some reason it disappeared when I pressed post ! Thankyou all for your words of support following my last post . Just come back from a family holiday in the Lake District .. was wonderful and even did a sunrise swim in lake Windermere !!.. I would never have done that before . Trying to pull positive things from all this .
@CrazyCatLady Hope your first radiotherapy has gone ok today. Good news you have Support session set up soon . Hooe you get on ok with the Tamoxifen 🤞. Hope your daughter is doing ok too and good news about the appointments. Your right it is getting chilly , I’m still wearing my wig as not brave enough to go out with my silver pixie wavy hair yet . I feel more secure when I have hat on and less paranoid about my wig . As I’ve kept my diagnosis quite private this is another reason why I’m not ready to brave no wig . As you say it’s not through choice our short hair . That’s good you will be signed off work until the end of the year. I’m working four half days from home, and that’s a struggle some days . I know at some point I’m going to have a discussion about hours . I wont be returning to full time.
@Kaz11 hope you are getting some support from work , you must be exhausted back full time . Have you annual leave planned ? It’s not good they expect you to be on full cylinders . It must have been difficult for you also going into the office and then having to deal with that awful insensitive person .. I’m gobsmacked too. You have a lot to think about then regarding future surgery also thoughts if anniversary coming up of diagnosis .. reliving it all in your head and remembering it all as if it was yesterday. Also with you on the platform if secondaries , it seemed every thing I read last few weeks mentioned it sent my anxiety through the roof , I do try and focus on the positive stories out there. I had counselling session yesterday and focused on thought diffusion techniques , there are some videos on iTunes about it . I’ve spoke with my gp today and have been prescribed 10 mg amitriptyline for nerve /joint pains it may help with insomnia 🤞🤞Are you still taking regular anti inflammatories ?
@Teagold @well fine on finishing the radiotherapy , how are you feeling ? Hope your daughter has recovered from Covid . Hues the couch to 5k going . Not started it yet but have fine lots of walks.
@Gelbel @hope your having a fab well deserved holiday.
sending love 🌈xx
Good morning everyone - brrr it's definitely starting to feel a bit chillier out there now, so may be digging out some of my chemo headgear to keep my ears warm. The hair is coming back well but still not enough to keep my bonce warm 🙂
@Kaz11 sounds like work is keeping you on your toes, but please don't overdo it....I've learned this lesson well. If you are finding it all too tiring, perhaps it's worth thinking about asking for reduced hours for a while, until you are properly ready for FT. Be kind to yourself and, like you say, we have been totally battered by all we've gone through (physically and emotionally) and it's only been a year since your diagnosis, so allow yourself that time to fully recover and recuperate. I've been told to give myself at least a year after treatment finishes to even begin to feel like I was pre-diagnosis (and even then I may still struggle from time to time).
After talking through with my Maggie's support worker and my BCN, I'm taking their recommendation to sign myself off for the rest of this year. This means, however, that I've got the joys of another 40 minutes on the phone to get through to my GP today to reorder my fit note. Also going to chase up about getting my 3rd primary dose of the covid vaccine. Of course I'm one of the awkward ones who's going to need the AZ one and not one of the others on offer. And finally, today, I'll be getting my tamoxifen script!!! Only taken nearly 4 weeks to get this sorted out....so despite the radiotherapy team wanting me to start them before rads, think I'll now wait until this is done and out of the way so I can check on any sfx from this first before putting the possible sfx from tamoxifen into the mix.
Today is my 1/5 rads sessions so hopefully they'll be able to find the vanishing tattoos on both sides (one in the middle is definitely still there though). However had my herceptin jab yesterday so feeling a bit achy all over so gonna ask for something to cushion my back on the machine.
I've had good news about my daughter's assessment - she's now got both the NHS initial assessment booked in for end of this month, plus we've also got a private assessment appointment booked in for her too (so either way she'll get some sort of diagnosis). Keeping them both as could be the NHS one will need a further, more in depth assessment so wouldn't be surprised if this doesn't happen until well into next year. Therefore the private one (booked for December) could mean a faster diagnosis and treatment plan. Just waiting to see now.
I've also been fast-tracked to receive my first high intensity CBT session in 3 weeks time - which I was really rather surprised about. I'm certainly not in the same boat as my daughter, so can't figure why I get pushed to the front of the queue over those who are really struggling to the point of harming themselves (which I am not). But at least we are both now on our path to sorting out our mental health issues.
I hear you too about the insensitive comments and actions....fortunately these have been few and far between for me, but I am able to actually address these (often well meaning) comments. I too get the 'oh you look really well and short hair really suits you' so I then tell them it's not a choice I made freely and about the effort it has taken me to 'look good' despite feeling so bloody awful most of the time. I wonder if you may have been on the same FB group as I am as there have been a few ladies joining recently who've been diagnosed with secondaries/mets. However, there was an influx via another site as plenty of ladies are in both this group and a dedicated secondaries group, so there's a lot of cross over. But, if it is the same group, I have found their help and support so valuable since my diagnosis - plus there is a lot of laughter involved, which is definitely my best medicine.
Hope you get to discuss your issues with the Letrozole with your team and hopefully they may be able to either switch brands or change to another AI to relieve the joint aches you're having. It's all very hit and miss I guess about which brand/type will suit us. And good luck with looking into your surgery options to give you back your symmetry. I'm lucky in that as I'm bilateral, both mine have already been 'done'. Not sure I would have coped with either mx or dmx so also feel lucky in that respect (even though surgeon said my surgery was actually more complex with potentially more recovery issues).
@Gelbel hope you are having the most wonderful holiday and have been enjoying that lovely Spanish sunshine and are feeling fully rested. So good to see that you now have your F2F appointment too....brill news! So good luck with this and hope they can get you sorted one way or another.
@Teagold hope your daughter is now fully recovered and that you, too, are doing better.
I didn't manage any swims last week as had a horrid cold (probably thanks to my A&E visit!) and can't go this week as in isolation prior to rads. But hoping I may fit one in by the end of the week or early next week...perhaps both!! Got my aloe vera in the fridge, stockpile of Aveeno Blue and off to buy a cabbage later so I can stuff the leaves in my bra lol 🙂 Apparently they have enzymes which help with the burning effects....husband obviously thinks I've gone totally bonkers 🙂
Have a good day my lovelies xx
Love Sam xx
How are you all? Apologies for the silence over the last few weeks but things have been manic work wise but have been catching up on all your news.
@Gelbel you will still be on holiday at the moment I think so hope you are having a blast. You will probably not see this until you are back. Glad you have your appointment and can hopefully get somewhere now. As with the hair ruffling I would have been furious! We are not like puppies or kittens to be petted. Well done you on answering back. I would have thought of something clever to say after the event no doubt as I was sobbing about it at home. Some people really are the limit. It’s as if you become public property post BC. I certainly need to channel some of your inner strength. I have a hair story myself but more of that later.
@CrazyCatLady how are things with you? I hope your daughter is progressing now you are on the counselling route. I really hope that makes a difference to you all. Good to hear you are having more time away from work too which will help and so good re the swimming. I like swimming on holiday but find it a bit high maintenance the rest of the time. Usually have to wash hair etc but just realised that would not be a concern right now!
@Teagold totally with you regarding all the psychological effects of this. I actually feel it is all starting to hit me now especially as I approach the anniversary of my diagnosis next month. I can remember it all as clear as day and being so anxious about having an op for the first time. Back for my yearly check up and mammogram next month too. I hope your daughter has recovered from COVID. It’s still very much out there. Who would have thought we would still be dealing with it over 18 months down the line.
Like you I am worrying about every ache and pain. Joints still ache despite the anti inflammatories from the GP which are making little difference. I know I am now post menopause but in my mind I can only put all this down to Letrozole. I think a discussion with the surgeon about changing my meds is on the cards as the achiness wears me down particularly mid afternoon when it seems to get worse. Maybe I am doing too much but get so frustrated that my body can’t do what it used to. I am told though that I need to remember how much I have been through. Our bodies have been hammered. Like everyone am fed up with everyone thinking I am fine now. I did join a private Facebook group for people with BC but have had to block it as I was finding it upsetting particularly with all the chat about secondaries on these platforms at the moment, it’s too much for my brain right now. It mentions about aches and pains - I have that all the time right now!
Working FT is also challenging. Again people think that means I am running on full cylinders but am so not. I had to lie down when I came back from my weekly visit to the office. Just felt burst. The fatigue comes and goes. I forgot how manic it is pre events and found this when I had one last week. Thankfully not on site at the moment but was dealing with so much. Was in the office last week and met a colleague who I had not seen since lockdown. Chatted through my treatment and told her my hair was short and silver now and it made me feel old. Also said I feel it will be another year before it’s a decent length. I had my wig on but showed her a pic of my hair au naturale. She actually LAUGHED and said it was so not like me, I did look old and at least I could keep wearing my wig for another year! I was so gobsmacked I didn’t know what to say. Could have done with @Gelbel being there! Felt really upset about it when I got home. I wouldn’t do it but I could have her disciplined for that - making fun of a disabled person as we are classed now. That on top of all the BC secondary stuff got me on a bit of a downer tbh. I also need to think about symmetrical surgery. Wasn’t keen at first but am so lopsided now I am considering it. The thought of another op scares me though.
Anyway enough moaning from me. Big hugs to all.
Just a quick one before I have an early night as we're up at 4am for holidays. 16 glorious nights. Can't wait - once we get there. The Spanish Travel Health form was a right palaver. 😖
Anyway, reason for bobbing on - appointment is 26 Oct and face to face.👏
Re taking prescribed indigestion tablets - really don't want to go down the tablet creep route as you end up taking 100s for every sfx any of them have.
More, and probably better good news - I forgot to put some beer in the fridge yesterday (bearing in mind I poured half a bottle away last week) so the only cold Friyay demob happy drink I had cold was some red wine. Oh my, dreaded it as I'm so off booze - I really enjoyed 2 small glasses. Having another little slurp now.
Hope your all doing as well as you can be.
Love and hugs to you all 🤗
So lovely catching up on all your news, in fact I got so distracted I forgot to get out of bed and make breakfast for my poorly 12-year-old (Covid 😱 - I’m just hoping my vaccine holds up!!). Anyway she’s managed to fend for herself and now dialled into online school so I can indulge in a few more minutes of forum time!
@Rainbow70 it’s so good to hear from you but I’m so sorry that you’ve been having a rough time. I really hope the therapy is helping and that you are feeling on more of an even keel. As so many of our posts reflect, the psychological impact of all this is starting to hit home and we deserve and need every ounce of support we can find. Big hugs to you xx
@CrazyCatLady - crikey what a time you’ve been having! Are you fully recovered now from the reaction? And still don’t know exactly what it was? I’m glad to hear you’ve been able to reschedule the Maggie’s session and brilliant that you have been able to take some steps to get more help for your daughter. I’m hoping life settles down a bit for you now and that you can get through your 📻-therapy smoothly. Kudos on the swimming - I’ve never managed to swim that far and I’m really impressed.
@Gelbel sorry to hear about the flu jab reaction and hope it’s calming down now. What you said about tiredness following rads really reassured me. I’m back at that point where every ache/pain/twinge/weary spell makes me think “oh christ it’s back” - I’ll talk to my oncologist about this next time I see him. I think that in a bid to prove to myself that I’m ok I’ve possibly been doing a bit too much physically - lots of long walks, been to the gym, started the C25K - and maybe that’s why I feel quite achey especially legs and shuffling round like an old lady when I first get out of bed in the morning! Also, major cheer for you standing up to the ruffling-hair guy. I probably wouldn’t have had the guts to say anything at the time and then would’ve gone home and stewed on it. I need to channel some of your forthrightness tbh. Where are you off to on holiday? I hope you have a fantastic time.
@Kaz11 how are you doing? I’m like you in that I’m quite sensitive about what friends say/don’t say so I’ve been keeping quite a tight circle around me over the last little while. In all honesty I’ve gone out of my way to avoid some people who I know will just upset me albeit unintentionally. It’s hard now things are “opening up” again so we’ve had events at the kids’ school where we’ve bumped into more people and of course with my new super short hairdo it must be fairly obvious what’s been going on even to those who don’t know. I’m also wary of people thinking everything’s all right now because it SO isn’t, I think the closest friends do get that this roller coaster will continue for quite a while but I’m going to fix a time to talk to my counsellor because I also don’t want to overburden them. Anyway, as always, didn’t want to make this all about me but just to say you’re not alone in this. Do you know anyone else who has been through this? I’ve been meeting up with someone locally also going through treatment who I didn’t know all that well beforehand but has become a good friend. We can rant and laugh about the whole thing, it’s been a tonic.
Had my last 📻 ⚡️ on Friday. Burst into tears on the bench as soon as it had finished, just couldn’t help myself. Of course they all said that’s completely normal etc and one of the girls gave me a hug bless her. They were so lovely and friendly that I’ve felt like I miss them this week and the routine of appointments kept me going. Now I’m having to avoid temptation to spend my time cleaning the house. I’m not due back at work until the new year but I’m doing bits and pieces, keeping in touch, the odd meeting etc. I think it’s useful and don’t want to rush into doing too much. Sam, you take the time you need, it sounds really sensible to have another month after all you’ve been through. And I really appreciated your wise words @Gelbel about phasing and standing strong, I can see how easy it would be for me to over compensate for time off by throwing myself in at the deep end when I go back, but if I tire myself out I’m no good to anybody after all.
Anyway better go and check on the invalid and see how she’s getting on with virtual school - poor little scrap!
big hugs to you all and have a fab holiday Gel.
Hi @Gelbel - oh no sorry to hear you've had problems with your flu jab and hope it's easing up now so you're good and ready for your holiday. Had mine on Saturday morning (eventually) as it was a drop in clinic at my surgery so the queues were so long during the day....went back around 2pm and it was down to around 10 people in the queue, and in and out in under 10 mins. Mine fortunately has been OK this time - I do sometimes feel pretty grotty for a few days afterwards, but guess the steroid loading at A&E may have helped me out this time lol 🙂
Hope that appointment finally arrives for you too - and not for next week when you're away! Sorry to hear you are still getting that horrendous heartburn - I had this during chemo and they put me on lansoprazole which worked a treat, so may be worth checking if they can offer you something similar (when you get that all elusive appointment!)
As for someone actually ruffling your hair!!! OMG!! I would have gone absolutely ballistic - so well done you on only vocal recriminations - think I'd be punching someone in the throat for that one! And as for our well meaning friends, yep, totally get that too. Whilst I am quite open and honest on my personal FB posts, and try to put the 'happy Sam' vibe out there, some still don't get that just because I look OK, actually I'm not really. The lingering post-chemo/post-surgery tiredness can be all consuming sometimes, so really not looking forward to how this will be once rads start. But my work still be ok with me and I'm fully expecting to need to sign off for at least another month (taking me upto mid November), and possibly beyond.
I've just rearranged my Maggie's 1:1 with the cancer support specialist (an ex-BCN) so she knows exactly where I'll be coming from. So definitely check out your local Maggie's - so far my experience with them has been fab. Also got my first Let's Talk assessment phone appointment tomorrow, so hopefully I'll get something from this too to help keep me in balance. To be honest, since my meltdown a couple of weeks ago, and now we're progressing with the private assessment for my daughter, I've been so much better. Taking some positive steps now which is good.
So after the traumas of last week or so, I'm hoping to get two swims in this week, so upping the game on this. Like you I find it so therapeutic - it helps me to just focus on counting my lengths and everything else just disappears for those 40 minutes or so. Must be helping me physically too if my heart function is still improving!
Thank you too for your kind words - things can only get better now 🙂
Take care and have the most wonderful holiday next week xx
Love Sam xx
Hello lovely ladies
Sorry, I've been missing in action been doing bits of packing for next week holiday most evenings after recovering from work and then... why, oh why can't we be 'normal' for just a few days - had my flu jab last Monday and have been 'off' since. My arm was still hurting on Friday.
Still waiting on that appointment. Going to chase again this week - meant to last but couldn't be bothered not feeling 100%. The fact I only went swimming once last week proves it! And I didn't go to rugby yesterday- first time I've missed an away match, without being on holiday, in 4 seasons - at least.
Where to start with you. My god, @CrazyCatLady your poor daughter - and you and the rest of the family. I hope she gets the help she needs soon.
I can picture your husband going in with the epi-pen like some mad scientist. See what I mean about being normal for a while?
Ditto @Kaz11 - you must've been scared witless on finding a lump. I'm so glad it's nothing that can't be sorted even if not in the easiest of ways. I've a little seroma under my scar - got me worried til I looked properly at it (and gave it a water bed style wobble). I tend to forget I ought not to hump stuff around or carry heavy stuff.
Glad to hear your tablets can be changed, I hope the new ones help to stop the aches and pains.
My tummy settled down but heartburn - my goodness it can be quite painful at times, usually after too many carbs.
@Teagold weary and achy - just the way to describe the long haul of rads. I'm still weary 10 weeks after - though getting better. Don't want to scare you but be prepared for the long haul - my BCN said it can take a year to get over. It's the weirdest tired feeling isn't it?
It's all really down to work, if I don't overdo it, I'm not too far off OK. When I do, wham! #Shattered. So gorgeous girls, please, remember, you have the right to flexible working and your employers have to make adjustments as we're now all classed as having a disability. This is the time to wave your new trump card whether you like it or not.
I'm very bad tempered though and my suffering of fools is on an even shorter fuse than before any of this. OMG a good pal's husband ruffled my hair last night saying that it looked lovely. 1 - no one touches me, ever, 2 - he'd never had done it when it was was a shiny cascade of shoulder length blondeness 3 - I am not a dog whose fur needs a ruffle. The only very loud words that came out (thanks to a chemo brain moment I was already having in the conversation I was part of) were, well... (sorry about this) FO and his name. He stropped off to a corner of the pub. Other pals' hubbies told me he'd been in a funny mood most of the evening.
My best pal keeps telling me what to do but gets stuff wrong. We just had an argument about the new travelling back to England requirements from 4 October. Not helped she's adamant we need -ve lateral flow tests for entry into Spain (we don't. She went to Portugal so 'knows it all') and swore blind she only had a lateral test on her day 2 back home last week and that's all we'll need. An hour later I got an apology from her - only because she was still banging on so I asked her how much she paid. £50. QED! Who knows what day the lft is going to happen from?
Anyway, I've done some on-line moving forward stuff and the book was sent to me, which I had a quick read of. Just want the actual sessions as I'm not really sure what's in my head to noodle out. Might speak to Maggie's although I am pretty sure my not putting up with bad behaviour/bossiness/fools is my reaction to life's too short. I've always been forthright and have stood up for myself/what I believe in/righting wrongs - it's just even more, let's just say pronounced!
Talking of mental health Mortimer and Whitehouse: Gone fishing has just started. Now that's a feel good programme so I'm off to watch it.
Love and hugs to you all 🤗
Hello again my lovely ladies 💖
So let me try again and hope this message doesn't disappear like the last one!
@Kaz11 so pleased you got some reassurance after your visit, although I'm sure capsulation is not a pleasant experience in itself. Hopefully the corrective surgery will sort things out. And as for the crying, I'm learning to let it all out now, and not at all a surprised that you had a good cry xx
I'm also with you on the work front - even when I've reduced down to 12 hours, they are still treating me as if I'm 'back to normal', which as you know is not the case at all. The decision to sign off again for another month was absolutely the best decision for me, and may extend it further depending on how I get on with the radiotherapy and sfx this may bring. Hope things settle down a bit for you workwise and good for you for sticking to your guns about not doing the travelling and taking on the extra workload.
Hope your appointment in November gives you some more options regarding the letrozole vs tamoxifen. Can't offer any useful advice on this as haven't started my tamoxifen yet, but it's imminent.
@hopeful1974 good suggestion about the Calm app so may look into this - just feels like I can't properly switch my brain off these days, always something swirling around in there. Glad you found your counselling sessions good and the relaxation session sound interesting (probably very similar if not the same as the ones done at Maggie's). I would take someone's hand off for a good massage! Hopefully I'll find something around my way soon....oooohhh full body massage, indian head massage and facial would be bliss right now.
I'm feeling left behind if both you and @Teagold are doing the Couch to 5K! However don't think I'm quite there yet but perhaps next Spring??? Think I'll stick to my swimming for now - did 1.25k on Wednesday afternoon, so I'm well pleased with that 🙂
I'm glad too that I've inspired you @Teagold to have a look at options near you for some counselling sessions. Good to hear too that rads is treating you kindly, apart from the expected tiredness. Guess you are now just about done, so hopefully over the next few weeks, you'll get your mojo back.
Unfortunately I missed yesterdays first Maggie's 1:1 with the cancer support specialist....my body decided at 8pm Wednesday night to start a rebellion and I started having a hives breakout. Thought a couple of antihistimines would do the trick, but sadly not in this instance. By midnight I was on fire and the hives were fully over my whole body, which meant the epipen had to be broken out. As you know, I don't do needles, so despite trying work up the courage to stab myself for half and hour, I had to give up and get the hubby out of bed around 12.15am. He is rather too entheusiastic about administering my epipen, but at least it got done. I then obviously had to call 999 for an ambulance, which arrived while I was still on the 999 call - brilliant response time! Sadly not quite the same at A&E - arrived at 1am and finally let out at 8.45am. Very tired, but the steroids and super strength antibiotics did the job. In fact, I could probably have gone home by 4am when the hives had all but gone, but alas not until I was seen by the doctor to give me the once over. It was also Fresher's Week here in Nottingham, so rather a lot of very, very drunk (but happy) students!
Anyway, all ok now and caught up on my sleep yesterday - however, looks like I may now have to knock white wine off my 'good' list of things to eat/drink 😭 But, as I had my herceptin the day before, I've also had to call the chemo team to see if they need me to top up on antihistimines before my next jab. The doc at A&E thought it was unlikely to be the herceptin causing my allergic reaction, but couldn't rule it out either.
My life is certainly not a simple one is it??!!
I have now also sought a private ADHD assessment for my daughter which means she should get a formal diagnosis within the next 8 weeks. After which, they can forward the assessment, report and recommendations to our GP to do any follow up and prescriptions. It's costly but will be worth every penny if she can be on a path to treatment before the end of the year. It's a win-win as she will be getting treated and I can try to stop worry about her so much, ergo my MH will improve too.
@Rainbow70 sorry to hear you too have been having your own issues and glad to hear you have got some sessions in with the psychologist and hope they are helping. Oh and another one looking at the C25K 🙂
@Gelbel hope you are getting somewhere with your follow up appointments and the MF course? And yes, totally agree ref the Sarah Harding news....it just hits you full in the face doesn't it and the worries all flood back to the surface.
Sending love and hugs your way and hope today treats you all as well as it can xx
Love Sam xx
Good evening all my lovely friends
Just wanted to say a big thank you to you all for your lovely messages of support after my scare on Tuesday. It means so much to be able to share how I am feeling with people who totally understand where I am coming from. You all mean the world to me.
@Rainbow70 I am so sorry to hear you have been struggling but it’s totally understandable that you feel that way especially with what happened to your mum and sister. The compassion focused therapy sounds interesting. I have never heard of that. I would be interested to hear more about it. Glad it seems to be helping you. I think the emotion of all that we have been through catches up with us all post treatment. During it we just have to keep going from one treatment to the next and then when it stops we have time to reflect on all we have been through and it hits us like a ton of bricks. A friend said to me that I’d not cried much during treatment but I have done now and I nearly flooded the car park when I came out from my appointment on Tuesday. Just felt overwhelmed with it all. My friend who had taken me couldn’t understand why I was upset when I’d had good news. That is the crux of it all for me with friends who are great but just don’t get how traumatic this whole thing has been for all of us and you don’t just get over it in an instant. I had the same tonight after walking with another friend. She was pleased I got on ok at my appointment and said I had done so well but maybe now I need more distractions. I take everything to heart and I know I am over sensitive but I felt like she was saying that I need to stop talking about it now and move on. Easier said than done and easy to say when you are not the one going through it. They would know all about it if it happened to them. Sorry for the rant but it’s just the way I feel.
Re my phased return @Rainbow70 I am back to FT as of next week. They clearly expect me to be working on full cylinders when in reality by mid afternoon I am burst and have run out of steam. Not feeling the love from my work colleagues, let’s put it that way! Although I don’t feel the anti inflammatories are helping greatly I forgot to take the tablet yesterday and knew all about it today. That gnawing ache which feels like growing pains and just zaps my energy was back today big time. It wears me down so maybe the tablets are helping more than I thought. As I said though I may ask to change as the surgeon said if I still find it difficult with the Letrozole. He said it’s all about quality of life and if I don’t have that on Letrozole he doesn’t want me to keep on putting up with it. He really is so nice and understanding and has a lovely manner.
Anyway my lovelies my eyes are almost closing. Thank you again for all your support and thanks for the yoga recommendation @Teagold will need to give that a try. Have also signed up for a free mindfulness course run by a cancer charity in late October.
Hello lovely ladies
sorry I’ve been off the radar for a while, I have been meaning to post for a while. My emotions and anxiety really peaked following finishing radiotherapy. I was having more bad days then good and tearful most days. I called breast care team and had an urgent referral to oncology health . I only waited 2 weeks for an appointment and have now had 2 sessions with a clinical psychologist .. we are focusing on compassion focused therapy. I lost my mum and sister to cancer and I have just convinced myself it’s me next. My mind goes off like a hot air balloon .. I do try and draw it in and think some one was watching over me as why did I get selected for an early mammogram at 49.
@hopeful1974 i also feel nature is helping me deal with anxiety. Couch to 5k sounds good, I may try that. I hope your treatment is going well. I have had a taster meditation session which was so calming.
@Kaz11so relieved your consultant was able to reassure you, It’s not surprising you had a cry. Must have been so hard also going back the unit. Sorry to hear about the joint aches, i find they are worse in a morning and if I sit for to long. Are the anti inflammatories helping ?I have thought about Amitriptyline as would be good for the nerve pain too also can help with sleep. How are you getting on with your phased return?
@Teagold hope you are doing and radiotherapy is going well… nearly there now. Where are you going on your hols ? Lovely to have holiday booked .
@CrazyCatLady I do hope your daughter is getting the support she needs , sending a hug . Glad you have had your radiotherapy planning scan , how did you find it ? I had both sides done also, just takes a little bit longer but soon passes.
@Gelbell hope you are doing ok and are you still managing to swim every week? Hope you have got your follow up appointment through and hopefully stomach issues have improved too. Sending you a hug .
sending love and hugs 🌈xx
@Teagold I’m really pleased to hear you have begun the Couch to 5K! I think that you could repeat a week if you find it gets too tough and just keep doing that until you feel ready for the next week. I’m not putting any time pressure on myself but write down each time I have done one in my diary as I consider it an achievement.
@CrazyCatLady I’m reassured by what you said about your heart scan as I have been quite worried about that. I had an echocardiogram a week ago and I will find out the results at my clinic appointment next week so it will be interesting.
@Kaz11 It sounds like you had a useful meeting with your consultant. It is good that they can swap you to tamoxifen if necessary. It can’t be fun to put up with unpleasant aches and pains. I have a friend who has been on tamoxifen since her mastectomy a couple of years ago and she has had no side effects at all. I know we are all different though in the way we react.
I hope you have all been able to enjoy the lovely weather today. Sending love and hugs. Siân xxx
Aw @Kaz11 I’m so glad that the surgeon was able to reassure you. Not at all surprised that you had a big weep afterwards after that additional anxiety. I feel like I’m on “high alert” most of the time and really struggling to relax. Tired but still not sleeping great, and jittery. I think all the stress must be catching up with us. Also sounds positive that there might be an alternative meds solution for you - 🤞 they can get that sorted. Hope you’re feeling better today.
@CrazyCatLady great news about the heart MRI! And glad you’re ok and rocking those blue dot tattoos 😂.
@hopeful1974 I’ve downloaded the Couch to 5k app and did the first run with Sarah Millican this morning - loved it! Surprisingly tough as I’ve been walking a lot and doing a bit of running over past week, but actually really like the structure of it so will try to keep going. Thanks for the reco.
Rads #13 today, skin still holding up but finding that I feel very tired after I get back from the hospital each afternoon. Just weary and achey. Hope that’s normal! Wondering whether and when I’ll start to feel a bit more like the old me.
@Gelbel I hope you’ve been able to get that appointment through?
Hope you’re all doing ok. Gorgeous weather today (here in London), last days of summer for sure but making the most of the sunshine.
Hugs to you all
Just a quick update from me. Went to see the surgeon today about the lump I found. He said the radiotherapy has caused the capsule around my implant to constrict and that’s what I’ve been feeling. It was very tender when he was checking it. Also feel like my arm is pulling a bit on that area despite doing all the post op arm exercises I was supposed to do. It’s all linked. Portacath scar also tender but I was told that was to be expected too. It was a big sigh of relief. I am due for my yearly check and a mammogram on the other side in November so feel reassured that I am going to see him again in a couple of months. I had a good cry in the car when I came out I was just so relieved. I clearly didn’t appreciate how uptight I was about it until I came out of the hospital. He said plastic surgeon may have to do some adjustments on the area when he removes the port from the implant.
I also told him that I am finding the sfx of Letrozole difficult. The anti inflammatories which the GP gave me have not made much difference. He said if it is affecting me badly they can put me on tamoxifen as there is not a massive difference between the 2 even although I am post menopause. So I’ll keep going with the Letrozole until I see him in November and if it’s still awful I’ll discuss changing with him.
So am off to bed. Hopefully will get a better sleep as I am like a burst ball now.
Arrrggghhh....I've just spent the last hour composing my reply to all you lovely ladies and it disappeared!!!
So I'll try again later (brain has now decided it's had enough and wants a rest), but firstly thank you all for your kind words of support, it really does mean a lot to me 💖
So far this week I've now had my radiotherapy planning appointment proper - and am now the proud wearer of my first 3 tattoos!! However the middle one looks like I've been stabbed with a blue biro and is rather smudgy. First rads may be on 13th October but they already said date may get pushed depending on whether they get my planning all sorted out by then. Also managed to do the 20 second breath holds, but now they tell me that as I did this during the CT scan, I'll have to do several breath holds for each side, not just the left side....pppfft!
Also had my 2nd herceptin jab today and this one was a proper stingy one...ouchie 😞 But one more ticked off the list and the rest will be done at home by a district nurse. They also confirmed the results from my last heart MRI and, yet again, my LVEF has gone UP!! So now standing at 65% (up from the 63% from last time and my original one of 55%!). I was amazed...seems like I've got a good, strong heart and even herceptin isn't affecting it. Perhaps my swimming is actually helping too!
So off to make the hubster's tea and I'll have another go tomorrow at my full reply to you all.
Love and hugs to you all xx
Hi @Teagold I’m glad to hear radiotherapy has not been too awful for you. I have heard that the evening tiredness is very normal, although I haven’t had radiotherapy myself. It is about the only thing I haven’t had as part of my treatment plan!
I use the BBC Couch To 5K app and I love it. You can choose the voice you want to hear and I chose Sarah Millican, as I love her voice and it is great to hear her calling me ‘flower’! After a week of not running due to post-chemo fatigue, I am off out this morning to do day one of week three. I’m not setting myself any time goals but just doing the next day of each week as and when I feel up to it. I always feel better when I have done it and definitely get the runner’s high.
I hope all you lovely ladies have a great Sunday. xxx
@CrazyCatLady I’m so sorry to read your news and what you’ve been through over last few weeks. But as @hopeful1974 @says you’ve been amazing and done all the right things to move yourself forward - actually I’m really inspired by you and want to check out whether there’s a Maggie’s near me or any of these programmes because I hadn’t thought of it before but the courses you mention sound just the ticket. I hope you had a cracking night out yesterday, comedy gig sounds brilliant. I’m so sorry to hear how much your daughter has been struggling and hope she is on a more even keel now. Like you say, we need to fit our oxygen masks before we can help others especially since we are feeling depleted after having all these treatments chucked at us but it’s so hard isn’t it. I find it very tough when one of my girls is struggling emotionally, as first instincts are always to protect them and make them feel better, but I’m very aware of how wobbly and exhausted I am myself so feel I don’t have the energy to be of much use to them at the moment.
Good though that you’ve now started on the rads path and that doc was able to reassure you re tender boob.
@Kaz11 will be thinking of you on Tues, please let us know how you get on. I too have got a couple of little bruised lumps which I’ve assumed are scarring but actually reading your post I thought I’d better get someone to take a look at them. I’ve tended to be a doctor-avoider in the past, being an ostrich and waiting for things to resolve themselves but can’t help thinking I probably should have gone to the doc sooner about my boob in the first place and I need to shake myself out of this tendency and be a bit more proactive and grown up about the whole thing! I’m so sorry that you’re still having the bone pain but perhaps the anti-inflams will kick in after a little while longer? It’s a bugger that your work haven’t been more supportive and not at all surprised that you’re tired now back to FT, are you keeping up the reflexology or any kind of nice massage/treat for yourself? If you’re still looking for online yoga recommendations I can thoroughly recommend Yoga With Adriene - there’s a whole channel with hundreds of videos, some long, some short, yoga for all types of issue and all levels and it’s not “scary” yoga but just very gentle. I also find her voice very calming. I’ve become slightly addicted and try to do a video most days even if just a gentle stretch for 15 mins because I’ve also been quite achey, especially my legs after a walk, and I think the stretching helps.
@Gelbel hope your follow up appointment has come through by now and the MF course. Totally with you re Sarah Harding news, had been thinking about her and then when the news hit it was a real jolt. I wondered about reading her book - not sure I’m quite up to it yet though. I’m currently reading (well, audiobook - good for long walks!) The Cancer Ladies Running Club by Josie Lloyd. It’s fiction but the writer has had breast cancer, I heard her on Postcards from Midlife podcast talking about it and everything she said sort of hit the nail on the head about her experience. Well worth a listen if anyone likes podcasts. I’m enjoying the book - it’s laugh out loud one minute and tears the next, but actually tear jerking things are quite useful at the moment as I know it’s all buried away somewhere and needs to come out. Reading about the little group of ladies supporting each other through BC has made me think a lot about our little virtual gang and how much you’ve all helped me ❤️.
@hopeful1974 I was thinking about a Couch to 5k, I’m walking a lot and the doc said don’t run whilst on rads due to risk of skin friction etc but once I’m able to I’d like to get back into it. Are you doing it through an app?
I’m two thirds through radiotherapy and it’s been ok. Skin seems to be ok so far but I know the worst is yet to come! Only thing I’ve really noticed is that I seem to be ok in the mornings and can get out for a walk, meet a friend etc, but then after my rads appointment (all at lunchtime) I feel weary and heavy and practically crawl home and can’t wait to get on the sofa. Is that normal?
Hope you all have the loveliest weekends possible. I’ve got two boxes of bulbs and a new bulb planting thingy (like Monty Don!) and I’m determined that this year I’m actually going to plant some in our postage stamp of a garden - have always meant to but never got round to it - so hopefully will have some lovely daffs and tulips to look forward to in the spring.
Big hugs to you all (and one to your daughter too Sam)
Dear @CrazyCatLady , really sorry to hear you have had a hard time, but I do believe that it all has to come out at some point and it sounds like you have been so proactive and taken amazing steps to get help with it all. I had my breakdown moment quite early on, back in March, when I had finished my EC chemo. I have had two lots of counselling, one 6 week course from Macmillan, and one 12 week course from the volunteers at my hospital. It is so good that you have a Maggies centre near you. There is not one near here, so I couldn't go down that route but they sound fantastic. As you say, you have to focus on yourself now, and once you feel better, you'll be able to support those around you once again. I have been taking the antidepressant Citalopram since March, which took about 6 weeks to kick in, but is very effective now. I find that it keeps me fairly level, so I don't experience highs and lows in the same way. Sometimes I wish I could have a good cry, but at the same time, I think it is more important that I feel balanced on a day to day basis, especially as I am still undergoing treatment. I have no intention of stopping them yet and may even continue them into my hormone therapy part of the treatment as I have definitely had the onset of the menopause with hot sweats, anxiety, insomnia etc. so don't want those to come back. We have a weekly relaxation session provided by a volunteer at our hospital and I really like that. It has taken me some time to get used to the breathing exercises and slowing down in general but it really pays dividends, especially when I do it regularly, even when I am feeling fine. I quite like the Calm app too. I find that massages also help hugely. Again, our hospital has volunteers who provide those. Finally, getting out into nature has helped me possibly more than anything else. I usually walk, but have recently started the Couch to 5K on my better days, which has given me an aim and a real boost. The happiness chemicals (endorphins and serotonin) that you get from running make me feel so much better. Your meal out with your hubby and comedy gig sound perfect!
I am not due to go back to work until next September so I still have quite a lot of time. I am quite relieved as work is so very hectic once you are back there. You're doing so well and with your attitude, I know you will get your head to a better place. I found it helpful to take one day at a time at first and not put too much pressure on yourself.
Huge hugs and lots of love. xxx
@CrazyCatLady I am so sorry to hear about all your troubles and the worry around your daughter. The wee soul must be struggling and what with everything you are dealing with yourself it is no wonder you had a meltdown. Totally and utterly understandable. My heart goes out to you. Sending massive hugs. Hopefully the courses and counselling will help you. It’s one tough journey isn’t it. I have said before that I was so naive going into all this. Had no idea the lasting effects it would have in so many ways. It sounds like you have a very supportive employer at least. Can’t say I have experienced the same. My manager has been good but this is the last week of my phased return and FT here I come. Am getting the usual vibes that people think I should be “normal” now. What even is normal now??!! Thankfully I’m mostly wfh at the moment and they agreed to me not travelling around for up to 6 months but now gettIng the feeling they are under p and keep telling me so. I think they want me to say I’ll return to travelling asap - wrong! They agreed it so can deal with it I’m afraid. Am so not used to putting me first but we very much all need to do that now.
My GP called last week. I told her I was struggling with joint pain on Letrozole. It wears me down. By late afternoon I am burst. She prescribed anti inflammatories but so far don’t notice much difference. Silly me thought I would be able to run around like Bambi after taking them but no unfortunately. She also mentioned amitryptiline to me. An old school anti-d apparently which in the low dose she described would be to help with joint pain and insomnia. I said I’d think about it. Will give the anti inflammatories a chance first.
Also found a small lump in my reconstructed side last week. Cue call to nurse. She said it may be scar tissue but have an appointment with surgeon on Tuesday to get it checked out. Putting on a brave face but bricking it. A former nurse friend said it’s too soon after treatment for it to be something bad but we all know on this awful rollercoaster we are on that nothing is certain and just when it slowed down and I thought I may be able to jump off it has speeded up again. As someone else said it’s easy to say these things when you are not the one in the thick of it. I know she is just trying to be supportive. Could cry at the drop of a hat. Have relatives staying for a few days which is great but just kidding on I’m fine in front of them.
Sorry for the rant but I know I am amongst friends here.
@Gelbel hope things are settling down for you. Will check this message for typos before I send as hands feel so arthritic at times that I can hardly bend my fingers (thanks Letrozole).
Good morning my beautiful pink sisters 💖
I've just been reading through all your posts since I've been AWOL (again!) and hope you are all doing as well as you can be xx
Unfortunately (or not perhaps), I finally had my little breakdown on Wednesday. I've had a few stressful weeks with my daughter and she's been to A&E a couple of times due to cutting or (on the last one) threatening to cut/take pills. The last one she was in college and at midday she was spiralling but at least had the good sense to call 111 who got an ambulance to her. She's finally starting to emerge from her depression but it is such a long and hard process.
I was due what I though was my rads planning appointment on Tuesday but turns out it was just a first consultation appointment to make sure I was fully healed and prepared for what was coming - which I am. So this left me feeling a bit deflated and knowing I've still got the full planning sessions to come. They did confirm I'd be on the 5 day rads as they can do both sides together, plus they want me to start my tamoxifen before I start radiotherapy (eek!) so they can check on how I'm getting on with them whilst having rads.
I'd also had a bit of an issue with my right breast which, whilst sat at work, felt like someone had punched me in the boob. Spoke to the breast NP who saw me just before my radiotherapy appointment and also got the surgeon to check me out as there was nothing visible (no redness, bruising - just really, really tender). Anyway turns out the surgeon thinks I've pinged a stitch which may have been attached to my chest wall - said my internal stitching should now be starting to dissolve so she's not at all concerned and the pain has now eased. There were also a couple of lumps I found, so again checked these out and said just a couple of very small fat necrosis areas which will hopefully re-absorb soon (so more stress and worry!).
Upshot of all of this, combined with my stresses about my daughter, as well as all other general life 'stresses' (work, home, etc) finally all came to a head and on Wednesday morning, completely out of nowhere and whilst I was sat having my morning coffee, the tears just started - and I couldn't make them stop.
I signed myself up for some MH counselling of my own (via the Let's Talk site) so have a call with them lined up for 28th Sept. After I'd done this, I put my slap on and went in to work, and it all started again - spoke with my boss who promptly sent me home and told me to take as much time off as I needed. After call to my GP, she wanted me to take 3 months off, but I said I'll just sign off for a month first and see how I go. She also offered me antidepressants to help me deal with any tamoxifen issues but I said I'd wait and see how I get on with them first, but if I do suffer with the hot flushes/mood changes, I'll think about it then.
Once I'd done all of this, I then decided to go to Maggies (more tears and snotty nose) and they have said that basically, despite me thinking I was bobbing along nicely with my cancer journey, my break was absolutely, and utterly normal. All the other life stresses just exacerbated it all and brought everything to the forefront. Particularly as I'm now approaching the final leg of the treatment (not including my 11 more herceptin jabs), everything just seems to catch up with us. I have never been one to actively seek out help, but this was so the best thing I could have done!
I'm now signed up for a 1:1 with the cancer support worker at Maggies, plus booked in for a 2 part Dealing with Stress workshop. She recommended the Relaxation class (via drop in) may be useful for me as well as joining the Women with Cancer support group. I'll also be booked onto the Now What? 7 week programme once I've completed my radiation therapy.
It's all now happening quite fast and I've now finally got my radiation planning appointment proper booked for Monday, then 2nd herceptin jab at hospital on Tuesday, with Maggies 1:1 on Wednesday (gonna need my own dedicated parking space at the hospital for next week!)
All in all, everything has been a bit of a blur and after getting everything out of my system on Wednesday, I'm feeling much better. In fact tonight (for the first time in over 18 months) myself and the hubby are going out for a meal (on our own!), plus booked to go to a comedy gig afterwards.
Hopefully, now I've had my breakdown, I can start working on my own MH issues (which in turn will hopefully mean I am in a better place to help my daughter), plus having some cancer specific therapy so I can properly process everything.
The Maggie's counsellor said you can't offer someone a drink from an empty cup - and that's it to a tee! I'm empty - emotionally and physically.
So the next few weeks will be all about me (that's going to be hard!) and after Monday's rads planning I'll get my treatment dates (5 days only whoop whoop!). I'm still doing my swimming - twice this week already - and getting an average swim of 1.1k (which is amazing for me!). Be interesting to see how my counselling and therapy sessions go, but I'm going in with an open mind. Hopefully I'll get something from each of them to help me cope with everything.
Spoke with breast care nurse today to chase;
1 - follow up appointment as the radiotherapy reception team whose number was on the last letter saying I will get appointment 6-8 weeks after rads ends said that nothing was in the system. I know that I said, that why I chasing an appointment I'm expecting but not received.🤦
Onc's secretary's phone just ringing out when I've tried her.
BCN emailing to get me in asap. Backlog for various reasons including just pushing people through actual treatment
2 - invite to a Moving Forward counselling course. As it's triggered by that appointment but BCNs aware appointments are delayed so I've details of that and next steps/useful info in the post.
TBH I need the Moving Forward now. Sarah Harding hit me hard and for the first time I had a real reaction to my diagnosis/treatment etc.. I was a bit of a mess on Sunday and early Monday. I'd thought about Sarah a lot and had been wondering how she was as my treatment ended.
@Kaz11 so with you on the 'Did I do all that?' questioning of myself.
3 - Changing these stupid bone tablets to weekly or monthly. I'm finding that if I wake up around 4:30am, I try to go back to sleep rather than take tablet but I don't as I'm waiting to take it to make sure I'm up right for an hour before I go swimming. So I take it that early and I sometimes doze sat upright in bed at that hour - not often - being awake from that time is a nightmare. It's like permanent waking up before your alarm goes off earlier than usual as you've a day out or work trip
Nurse said acceptable reason to change. I'm happy to try a weekly tablet. Can manage Sunday AMs for an hour as I do have a lie in.
Stomach seems better. Can get awful heartburn but that seems to be improving unless I over indulge the carbs! Was offered those indigestion tablets bit I'm not adding to the pile I'm taking. Nothing Gaviscon or Rennie's can't fix.
Nurse also reminded me that rads can take a year to get over and to continue the moisturiser on my chest. Thank goodness my work and pals realise I won't be the old me for a good while. There's an argument for if at all. Least they know it'll take some time to recover.
TBH I asked my boss to tell the team not to ask me how I was on Monday as I wasn't good. She said to take some time out, I didn't, I just didn't want anyone being kind/thoughtful to me or I'd been a fountain of tears and snot again. Sorry your work's not as supportive @Kaz11 I'm still on 6ish hours as any more and I tip over into being very tired. Think like a toddler who falls asleep in his dinner!
Perked up yesterday - Mum's birthday so my brave face became a reality.
Re coloured hair. Mines been all shades of copper and red/burgundy and then cool blondes since I was 16. That's 43 years! I'm just about coping with my loads of salt and not much pepper. I've started using a steel toner which blends it a bit more. Looks OK and I get compliments from the girls and a couple of their husbands.ine grunts it's OK. 🙄 Roll on the end of October and my colouring appointment with my hairdresser. I'm going various steel/greys highlights in what will eventually be a Jamie Lee Curtis pixie with a bit more of a fringe to vary the style.
I hope your rads continues to go well @Teagold I hated it. Didn't miss the equipment noises of chemo one bit but chemo was much friendlier for me.
@hopeful1974 may your Dox. SFX be few and far between, if any.
@CrazyCatLady how's you? Good I hope.
Love and hugs to you all.
PS excuse any typos - doing this on my mobile.
Hi @Teagold and all you other lovely ladies. Great to read all your updates and see what life is like on the other side of chemo! I have my 4th chemo out of 6 this Friday (delayed from last Friday due to infected finger). I am having a lower dose of Docetaxel as a result (60%), so hoping that my side effects might not be so bad. They are manageable anyway. Just bad for about 3 or 4 days.
I’ve loved this summer and time seems to have gone by quite quickly. I’m getting my booster jab in the next couple of weeks which is good as I feel I need to keep away from people again with the relaxation of restrictions. xxx
Hope you are all doing ok today on this Wednesday (hump day). Sun looks like it’s poking through here although forecast is for thunder and lightning tomorrow 😢.
Great to see everyone’s news.
@Gelbel any update on your appointment? Hope you are finally getting that sorted out. Thanks so much for the confidence boost re my hair. It’s getting wavy now though it goes more that way after I put the follicle boosting gel through it. Am actually starting to enjoy running my fingers through it. It feels soft but much thicker than I had before. It was so fine previously that it went everywhere even in a wee puff of wind. Nowhere near long enough for that yet but feels quite good as it doesn’t move much so is low maintenance at the moment. A friend said I should cut my wig a bit shorter if I still feel nervous about going out au naturale and then when my own hair grows down more it won’t be such a transition between the 2. Will have a think on that one as my own hair still has a way to go yet. I’ve always tried (via my wigs) to look as like my previous self as possible and with the best will in the world no one would believe I have the current length and colour through choice. I know grey is in but there’s a big difference between the dyed grey/silver the 20 somethings have to the natural salt and pepper. Someone said to me that going out au naturale is part of acceptance as I need to accept the new me/the new normal. I still don’t see “me” in the mirror but am sure that will come in time. Much better than I was about seeing myself now.
@Teagold not surprised you are tired on rads. I felt like that too. Glad you find the environment friendly. My onco has suggested yoga to me as well, do you have any youtube/online recommendations? Walking is my exercise of choice at the moment. Think Joe Wicks may be a step too far for me yet.
I am now working 4 days and back to FT in 2 weeks time. Got the pay thing sorted out eventually but just annoyed as I shouldn’t have had to. If I’d not challenged it I would have lost a substantial amount of money. It’s also as someone says you get one day of sympathy and then it’s back to normal. Feeling those vibes now as I am going to be expected to go back to full pelt with no hand holding when back to FT. I was only helped during my phased return.
Been feeling more tired lately. Was out a walk on Friday and had to lie down after. First time I’ve had to do that in ages so was surprised but I suppose I am now upping my hours and having to get up earlier as opposed to whenever I felt like it (usually 9ish).
As you say @Teagold think the psychological effects just kicking in now I have time to process stuff. At times it seems like a dream (a bad one obvs) and I say to myself “did I actually go through all that treatment especially chemo?”. Am sure that sounds daft but that’s the way it’s making me feel.
Also so sad about Sarah Harding. I know all our journeys are different but I still find it very upsetting seeing that happening as it’s still BC connected and certainly gave me a bit of a jolt.
Currently sitting here waiting on GP to call. They surgery receptionist said the hospital wanted me to have a catch up so here we are. No specific time (they are not running to schedule apparently) so I am hanging around all day as a result. Did some chores but frightened to do anything noisy or even put radio on in case I don’t hear the phone. Going to speak to her about Letrozole as finding the aching joints hard going. Hands now feel like I have arthritis when I get up in the morning.
@Gelbel thx for tip re swimming, I will be good and stay out of the water for a bit longer. Gentle gym sessions and walks are all good for the moment. Online yoga on YouTube also helping - nothing too strenuous, just feels good to move my old bones. Have had first two rads sessions - it’s like a whole new world in the radiotherapy wing, very chatty patients, the staff are all lovely, a more relaxed feel. Nice not to be surrounded by IV machines beeping and clicking like on chemo ward. Feeling ok so far, a bit knackered last night but then the mini heatwave might have clobbered me (don’t get me wrong I love it but it makes getting around more tiring!).
@Gelbel sorry you’re having such hassle with this appointment? Any luck this week trying to get it sorted? How’s the heartburn/nausea? Seems bloody unfair that you got through all that chemo and now suffering with this. Really hope you can get the tablets switched and things calm down.
@Kaz11 hurrah for your hairdresser and for all the people who are just lovely and human to us when we need it most. Did you get the pay issue sorted? So not what you need having to deal with that kind of stress. I feel just like you re people expecting me to “bounce back” now treatment is nearly over. I honestly don’t think the whole psychological side has remotely kicked in yet. I don’t even feel ready to finish treatment - I know that sounds weird and really don’t want any more treatment! But it’s just a case of mind catching up to body, so to speak. I hope you’re doing ok and taking it easy on yourself, as you always tell us to do.
@hopeful1974 fantastic to be 2/3 through and fingers crossed the remaining cycles are still kinder than you were finding them before. Did you have a lovely break? I’ve really missed getting away this summer but can’t wait for a few days’ break in October fingers crossed.
@CrazyCatLady I hope everything is going ok with you. When do you start rads?
Big hugs to you all
Still waiting on the appointment. I called and was told to give it 2 more weeks as they had a mass pingdemic crisis and annual leave, which has left them (a bit) behind.
Next week I'm not settling for an excuse. I need to sort these stupid tablets out. They add 11% to my 5 year prognosis so I can't not take them. The indigestion/heartburn/sickness is getting worse.
@Teagold please don't swim on rads. I have skin like a rhino's thank to years of pig-roasting twice a year for at least 12 whole days. There is no way I'd managed it during it and I was touch and go for going 2 weeks after. And, if you're anything like me and others, you'll be absolutely shattered. It's a strange tiredness I've not experienced before and I still suffer it if I work too long. I felt myself tip over the balancing point today and bam - one wasted evening and I really want to be in bed now.
As for crying at the concert - why not? So much to cry celebratory tears for.
@Kaz11 I live in, let's just say, an area of Leeds where people call a spade a shovel and don't hold back at commenting on anything and everything. Not once has anyone looked twice or anyone said anything about my hair. Or lack of. If I look at the photo of my grinning like a Cheshire cat on the day I took my girlfriends out - you could see my scalp. If anyone does, I'd say it was one bleach too many. Could you say highlights gone wrong? But no one will.
At rugby last week a couple of people (who don't know) said that it looked amazing!
If you're out, out slap the slap on with lots of eyeliner and exaggerate those cheek bones.
@hopeful1974 so glad to hear you're not suffering too many sfx.
Take care everyone.
Love and hugs 🤗
Thank you all for your responses, I really appreciate your support so much. As you say @hopeful1974 and @Teagold this is the forum where we can be so honest with each other and say exactly how we are feeling, both good and bad. It’s good to be able to rant when we need to get things off our chest (not a good pun!). I said to a family member at the weekend about my joints aching and his response was along the lines of I have got rid of the cancer though and ignored what I said. Finding that with so many people who think you should be fine now that the active treatment is over. Hello I am still on other meds for 7 years but they seem to think that’s nothing. I suppose it is compared to chemo but it’s still having it’s own effects on my body which I didn’t have before and that’s the point none of them seem to get.
As you say @Gelbel recovery is going to take much longer than originally thought. I think sometimes I forget how much treatment I have been through as have we all. The chemo is there for a reason and I need to remember it’s a serious thing I’ve had. At times it still feels a bit surreal like it has been a bad dream and it didn’t really happen to me.
Thanks re the revitalash info. Any update on your follow up appointment yet? Great news re your parting. My hair has swapped over and is now growing from a main point on the other side of where my parting used to be. Odd but just delighted it’s coming in and possibly slightly thicker which is good as my hair was so fine before.
I had my first haircut on Saturday. Had to get all the original longer strands cut off. It is quite short at the back but hopefully it will now grow more evenly. My hairdresser said it was strong so the Nioxin must be doing it’s job. She didn’t charge me bless hair. Said this one was on her as she was so pleased to see me. I nearly burst out crying, it was such a kind gesture. Friends said I should go out without my wig now but I still feel I have a cancer hairstyle yet and am not confident enough to do that - maybe when it grows a bit. I still couldn’t face questions from people I have not seen for a while as it’s obvious my hair wouldn’t be like this without something drastic having happened. You don’t go from shoulder length brown/blond to salt and pepper very short crop out of choice - well I wouldn’t anyway. Fingers crossed it continues to grow quickly and I will have my Linda Evangelista style from the George Michael video before too long. If only I could have her face too….🤣
@hopeful1974 another step along the treatment journey for you. Keep crossing those days off and you will get to the end. Hope you are enjoying your break in Wales.
@Teagold thanks for your lovely words of support too which meant a lot. It’s a tough old road we have been and continue to be on and it helps so much to say what I really think to those who understand better than anyone else.
Like you my sleep is not great. Now back to my 2 hourly sleep slots which must be menopause related. Certainly didn’t have these issues pre BC when I had to stop taking meds which helped it.
Got paid today only to find that they still haven’t paid me back for last month so cue yet another email to HR. I really don’t need this. They should be supporting me but maybe that’s me with my naive head on again. Don’t see why I should be out of pocket for another month.
Re a follow up appointment I’m not due back until November to see the surgeon for my yearly check up. Have appointment with GP next week as she wants to see how I am. Will definitely discuss the Letrozole sfx with her but don’t want the anti-d’s. I was told by someone else the sfx should settle down after 3-4 months so here’s hoping. I am at the 9 week point at the moment.
Glad you enjoyed the reflexology. It’s great isn’t it. I will be continuing it every few weeks for sure.
So glad you enjoyed your concert too and cry all you like you are allowed to bubble all you want as far as I am concerned. Lesser mortals than us would have caved by now.
Take care everyone and thanks again you lovely ladies or should I say warriors for your unflinching support, you are all superstars in my eyes.
love Kaz11 x
It is so lovely to read all of your updates. I love that everyone can share their experiences and feelings in this group - the one place we can really be our true selves. I am doing pretty well and will be having number 4 out of 6 of my TCHP treatments next week. Being 2/3 of the way through will be good psychologically and I am still crossing each day off on the calendar as an achievement! I seem to have one week of feeling a bit grotty and two pretty good weeks, so it is doable. Fingers crossed it continues like that. My main issue this time was nasty acid reflux for the first week, but that has now disappeared and I am enjoying food once again! I have not lost any weight on this regime, which is the thing I was most worried about as I was 9kg lighter than this at my lowest point on EC!
I hope you have all enjoyed the Bank Holiday weekend. We have come to Wales for a few days and it has been sunny, which has been a real boost for us all. Love to you all, Siân 😘
@Kaz11 - absolutely NOT moaning or being a misery!! I have found - and I think you have too - that this forum is the one place you can say what you’re really thinking and feeling when the whole rest of the world wants you to say “I’m fine” “I’m ok” (actually I used your “I’m bearing up” quite a lot @Gelbel ) … You’re actually just being honest about how you feel and it’s all completely normal given that - as your onc says - you’ve been hit by a truck, we all have. There’s a lot of blurb out there about “healing” and how long it takes, I’m trying to do a bit of reading up on it now - diet, exercise but also just how to get your head around it all. It will take time, and that’s hard as we are all impatient to get on with normal life and not feel tired/achey/different etc. I think this is why I found that article you sent last month so helpful to read and will keep going back to it. And it’s good that you’re managing the phased return and have a supportive boss, but you have had work-related issues to deal with throughout the past few months as well as everything else. I can completely understand not wanting to take any more meds, but it may be worth a conversation in a month or two if you’re still feeling like this. When’s your next follow up appointment?
On the hair front, I had my first trim last week. The lady I went to see for reflexology (OMG - amazing) also happened to be a trained hairdresser though doesn’t do it much now except for old ladies who can’t get out to the hairdresser. So she offered to trim off all my crazy-old-man long fluffy bits left from cold capping. I haven’t had my hair cut for nearly two years so it felt like a treat, and pleased to have it all neat and one length (about one inch long all over), so now hopefully it can just grow. That evening, I went to a concert my daughter was playing in and just cried cried cried all the way through - combination of the music, being v proud of her, being back in a concert after nearly two years thinking about everything we’ve all been through since. Luckily mask-wearing meant not too obvious I was weeping profusely but frankly don’t care if anyone noticed and thinks I’m a nutcase. This may be one of the positive effects of this whole sorry business, that I no longer care quite so much (if at all) about what people may think of me especially if they are people I don’t even know! The reflexology was phenomenal and could really feel it at certain points on my feet; the lady who does it was just lovely, her husband has had cancer so had surgery-chemo-rads in the past so she understands cancer treatment and how it rocks the body and she talked a lot about the time it takes to heal. She said her husband was completely fine now and back to normal - 4 years on - but it took a good year for the after effects of treatment to wear off. Obvs a different kind of cancer and treatment etc but I thought that was interesting to know. Like you @Kaz11 I’d sort of thought a few weeks and I’ll bounce back but now realising it just won’t be like that.
I think the walking is helping - and yesterday I went to the gym, feeling v naughty, but I just went on the bike and did legs/tummy stuff no arms or chest. I came away feeling great - endorphins, no pain. I’ve been told not to do anything much during rads as can’t get too sweaty and irritate the skin, also been told no swimming during rads, so I thought I might try and do one or two more very gentle sessions this week then pause again. I’m four and a bit weeks post surgery now. Tbh I think I probably exert myself more (upper body wise) doing household stuff like lifting pots and pans or cleaning a surface/sweeping a floor etc!
@CrazyCatLady I’m so happy to hear that you had a successful and reassuring chat with your doc and that the treatment plan is now clear and as you originally expected. And I love your whole attitude to future and cancer can do one - hear hear! The Cyprus plan sounds brilliant. I hope the holistic care plan comes through and is helpful.
@Gelbel any luck chasing up that appointment? I hope you get seen soon and can get your biophosphonates switched. Congrats on the parting! I’m going to try the revitalash product, eyelashes are coming in but still pretty short and need a boost!
I think you’re all phenomenal being back at work now. I’m still off. Been doing the usual - one or two calls a week, the odd email, lots of keeping in touch with my team and other colleagues over WhatsApp etc. Next week one or two meetings. That’s all manageable but I feel like any more than that for now would be too much. Still not sleeping brilliantly but still feeling pretty wiped and hard to concentrate. My rads starts next Monday for three weeks so I guess I’ll need a bit of time after that to pick up again.
Anyway - sorry, another very long and rambly post from me. Hope everyone else is doing ok and big hugs to you all. Enjoy the bank holiday.
@Kaz11 - you're not moaning nor a misery. You're just right about it doesn't feel right that we get back to 'normal' like after the flu. I've got my heads around it's going to take a long old time. The rads tiredness is such an alien feeling to me and I'm so surprised how it's not getting much easier. Still on the whole, I sleep very well - just often wake up tired.
I got my Revitalash from Cult Beauty. They tend to do pay-day offers and you can sign up to get 10-15% off as a new customers so it does bring the price down.
@CrazyCatLady what wonderful news! I am absolutely delighted for you. And that lovely planning for Cyprus.
LIke @Teagold, it's good to have a plan. We've had our October holiday in since last year and it's always been calling me from the calendar as I've gone through my treatment. We've one booked for March too.
Still no sign of my follow-up appointment so I am going to call this afternoon. And ask about the Calcium and Vitamin D I need to take with the biphosphantes (sickiness slowly going but acid-reflux, wow that can't half kick in), I was told they should automatically be dispensed with them but none appeared when I went to collect a prescription from the pharmacy today. The pharmacist was very dismissive. Sorry but if I end up taking the blighters for 3 years, I am not paying silly money for the high dose Ca and Vit D I need to go with them.
I have news... drum roll please...
I have a parting!
And on that note - be kind to yourselves.
Love and hugs 🤗
It’s lovely to have been reading all your updates over the last week or so and great to hear a lot of good news.
@CrazyCatLady it sounds like you and your daughter could challenge Duncan Goodhew (am showing my age now!). Swimming is a great all round exercise and hope it gives your daughter a lift too. I know how much it worries you.
Brilliant news for you following onco call with all those results. What a weight off your mind and no bisphosphonates etc is great. Hope the tamoxifen is ok for you. A fantastic prognosis for you and a pair of perky twins into the bargain! You go girl. So pleased for you. Hope the rads appointment goes ok too.
Not surprised you are tired at work I am too and totally get the feeling of being far from normal yet. I like the sound of the Holistic Care Plan. How does that work? Way to go re Cyprus!
@Teagold well done you re yoga. My onco recommended it but not started yet. I have been doing my usual walks. Hope you are feeling stronger each day.
I understand the not sleeping, totally with you there. Glad your rads appointment in and hope you book the reflexology. I am enjoying the foot massages and it’s good to see the complementary therapist and be able to ask her a few medical questions if need be. Well done you on getting a holiday booked too.
@hopeful1974 half way through yay! What a milestone. Just keep crossing off the days and with each day you are nearer the end than you were yesterday.
@Gelbel good for you re the swimming too. You are all putting me to shame.
Poor you didn’t get a call back from your team and sorry to hear you are feeling sick with bisphosphonates. I had mine by IV. Felt a bit rubbish for a few days but ok after so sounds like I was lucky there.
Where did you get the Revitalash? Sounds fab. I have been using Lipocils which seems to be doing the job. Eyelashes getting quite long and eyebrows thick.
Here is my update.
Getting first haircut on Saturday. Quite nervous but my hairdresser knows me well so am sure she will do the best for me. Don’t want any of the new fluff trimmed at the top but hopefully will tidy up the long strands at the side which are the originals from before. Then it should all grow at the same pace.
Now on 3rd week out of 6 of phased return. Had issues with my pay which was stressful but I challenged it and all sorted now but has left a bad taste in the mouth. We are very much a number. Line manager has been supportive but no one else so it’s disappointing. Like you @Gelbel and @CrazyCatLady I feel tired. Am wfh but yesterday I lost my oomph mid afternoon. As you say it is a stark reminder of how far from “normal” I still am. Think I was a bit naive coming into all this. I thought to myself after op will have some rads and then will just have to take some pills so I would be as right as rain within a few months. WRONG!!! The reality is so different especially with chemo in the mix. I genuinely didn’t realise that my body would take so long to recover and now wonder if it will ever be the same again. I hate the feeling of limitation because I don’t have the energy I had before. Everyone thinks I should now be fine and they can’t understand why I am not me yet.
Not sure if it is the Letrozole but my joints ache badly. Not sore but really achy. Am like ET walking when I get up in the morning and am so stiff when I get up after sitting down for any length of time. It is wearing and feels like my body has let me down. The onco said to me at my follow up appointment she wanted me to get anti-depressants for 6 months (her suggestion not mine) as “you have been hit by a truck” she said. She said she recommends it for all her patients to help get their confidence back. I am not keen to take more meds especially when you have to try and come back off them. Feel like my body has had enough drugs pumped into it as it is.
Anyway sorry I don’t mean to sound a misery guts. Kind of stupidly thought that post active treatment taking some pills would be like taking a vitamin tab and I am so not finding it like that. Am sure it’s not like that for everyone but getting rid of the oestrogen is not making my body feel good and that’s me just being honest. BC is the gift which keeps on giving. So glad I have respite for a while on some work duties as yesterday was just a reminder that my energy reserves as still at a low level however disappointing that may be.
I am told not to be so hard on myself but that’s easy for people to say who have not been through what we have. Sorry that sounds ungrateful doesn’t it. Just getting a bit fed up of the “you are so strong” comments from friends. It feels a bit meaningless after the 20th time. Jeez I sound bitter, need to get a grip!
It is a sunny day here though so on my day off am out to enjoy it.
Take care all
Lol....yes swimming and grinning - we must look like complete loons haha 🙂 Went again last week and tried out the 'Health Suite' beforehand. What a con! It only had a steam room and a sauna, and the sauna was out of order! Anyway, me and my daughter enjoyed the ladies only swim afterwards and, by my daughters' tracker, it said we'd done around 37 lengths (so teeny bit more). Think we've both got a bit of a competitive streak as we normally time ourselves against the Speedo clock (and each other)....both currently at 45 seconds per length, so aiming to go under 30 seconds before too long haha 🙂 Gonna get in at least one swim a week before radiotherapy starts - planning appointment booked in for 14 September, so guess it will likely be the following week (ish). Aww feel for you @Teagold - but it won't be too long until you can be a loopy swimmer/exerciser too. And good luck for your rads appointment too xx
Can't believe it's already been 6 weeks since you finished your radiotherapy @Gelbel ....that's flown by. So good luck with your follow up appointment. And hope they sort out the bisphosphonate issues for you - fingers crossed they green light the infusions (and these don't give you the horrid sicky issues).
In other news, I have now had my onco call....and can finally breathe a sigh of relief as it was all good 🙂 There was actually Her2+ residual but because I'd had such a good response to chemo and what was left was minimal, they've decided there's no need for Kadcyla and just going to be on the Herceptin jabs (first one at the chemo unit on 31st August). Also said no need for bisphosphonates as I'm pre-menopause and my age is in my favour (54) so tamoxifen will be all that's needed. Of course this could be reviewed later as and when menopause kicks in fully.
Oops sorry - was writing a lovely long post on my phone and then got a call in the middle of it and must have somehow posted this by mistake, perhaps with my ear!!
@Gelbel and @CrazyCatLady I’ve got images of you both serenely swimming along with big smiles on your faces, lovely! I’m so envious - would love to go for a swim but still under doc’s orders to do no exercise for 6 was and no upper body exercise for 3 mths. Have been out walking and sneaked in a bit of yoga - it didn’t hurt (and nothing fell off!!) so assume that’s ok. Otherwise, feeling pretty good - not too sore at all, bit tight here and there so trying to do more stretching. Just been feeling a bit zonked really - some days feel almost as though I’ve been hit over the head! Not sleeping brilliantly or at least not as well as usual, so that might be it, or maybe it’s because I’m doing so little and not tiring myself out. Got my pre-rads appointment tomorrow so looking forward to getting on with that, probably starting in a couple of weeks.
@hopeful1974 great that you’re halfway through and that it’s been less rough so far 🤞 - hope you have a lovely week away.
@Kaz11 how is the RTW going? Hope all ok and not too knackering, it’s good that you can build up gradually and also that the pressure of travelling around is off for a while. You’ve prompted me to make a reflexology appointment - a friend gave me a voucher for my birthday which I didn’t feel like using whilst having chemo but I read your post and thought yep, that sounds fab so hopefully going this week or next. That is, if the poor lady will touch my feet - the toenail situation is pretty disastrous so she might take one look and run a mile 😂.
@Rainbow70 how are you doing? Hope all ok. 🤗
@Gelbel sorry to hear that the tablets kicked off tummy issues again and hope you’re able to get that sorted at next appointment.
@CrazyCatLady how did your onc appointment go? Did you get clear answers to all those questions? Hope everything is settling down and no more curve balls, also sorry to hear about the driving test mix up and hope your daughter is ok.
Have finally booked a little holiday - not until late October (half term) but just can’t wait to see the sea. Feels very odd to book something in the future, something I wouldn’t have thought twice about once upon a time but now feels like such a leap of faith but at the same time good to do it and have something to look forward to as we haven’t been away at all since last year.
Hope everyone is having a good day/week and sending big hugs to you all.
Glad to hear your TCHP is being kinder to you @hopeful1974 - long may it continue. Enjoy your week away.
@CrazyCatLady - you and I are swimming at the same pace. I tried to go faster or harder today - it's not that I couldn't (nothing ouches any more - I was a bit sore in the muscles they cut to get my 40+ nodes out at first) - I day dream too much. I find it my work thinking/creative time. Then I get to thinking how happy I am that I am able to go back swimming that I get even slower and start grinning to myself. People must think I am mad.
Sorry to hear your daughter got her test muddled up - we must be giving off 'chemo brain' vibes.
I put in 3 calls to my BCN team last week with no call back. So in the end decided to put myself back on my biphosphante tablets. I hate that hour I need to up upright afterwards - really messes my routine up. Though I did doze this morning before getting up to go swimming. Two days later the sicky feeling, which had totally gone, came back. I'm still waiting for my 6-8 week post-rads appointment - I finished 6 weeks this coming Friday - so will chase on Wednesday. They either 1 - change the brand, 2 - give me a monthly tablet or 3 - give me 3 or 6 monthly infusions to stop the sickness. I am not going to add anti-nausea pills to the list of tablets I take and I'm certainly not going to take them for 3 years just not to feel ill. I'll try all options - though TBH infusions are my preferred choice. Got a feeling the trust will do as a last resort as I suspect it's the most expensive option. At least the Anastrozole (doesn't seem to) have any sfx.
Apart from that, I'm not too bad. Doing 6 hour days at work for the time being as a full day kills me - tiredness and chemo-brain kicks in big style. Work are happy with that. I'm not quite as tired in the evenings now if I take it easier at work and could easily last til 9pm before going to bed but I go up early to watch decent TV (compared to the rubbish hubby would rather watch!) - don't tell him that though!
I'm a very cheap date - still only having a small beer or 2 on Fridays or Saturdays and being quite squiffy from it! I'm going to try wine on Friday night - as it's a bank holiday weekend I can drink the bottle over 3 evenings! I've decided not to drink when I go out - didn't like the feeling of not being 100% in control when I was out last weekend.
I've started to use a bit of steel-coloured toner on my hair and now there's not so much difference between colours - it looks good I say so myself. Decided I am going to grow a spiky pixie with a longer fringe that I'll have highlighted different shades of grey - something to aim for. My eyebrows have some colour in them for the first time in my life ever! My boss recommended Revitalash (created by a Dr for his cancer recovering wife). Oh my! It's expensive but it works. Mine are better than pre-chemo - curling over my hooded eyes at the top.
Love and hugs to everyone. 🤗
Hi @CrazyCatLady Sam, thanks for that. Good to know! I had my eyebrows done with semi-permanent make up before starting chemo in Feb, but they never fell out completely so it is good to know that they may come in handy after all. I also had my eyelids done with a thin black line so hope that may help a bit. I tend to put make up on on top anyway when I feel well enough, which makes me feel a lot better. Thanks again for the info. Love, Siân xxx