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
Hi Siân - halfway there now yay!! I found after C3, the rest seemed to get a little better each time (so only had 5-6 crappy days after chemo). However they had dropped my carbo and for the last one they'd dropped my dox so only sfx from C6 were from the steroids - so just buzzy for about 3 days! Hope it will be the same for you too xx
I also found my hair was starting to grow the teeniest bit towards the end of chemo and I held on to most of my brows and lashes until just after I'd finished. However they've gradually thinned out over the last couple of months, but starting to sprout back again now (I've got about 4 or 5 normal length lashes left each side but now got the tiny short ones coming through). False lashes are a definite much have now for me 🙂
Have a wonderful time on your break in Wales and hope the weather picks up a bit for you too xx
Love Sam xx
Lovely to read all of your news and to see what awaits me when I finish my chemo! I have now completed 3/6 of my TCHP chemo/targeted therapy regime, so feeling happy that I am halfway. I wasn’t feeling good yesterday but a bit better today. In general, this one is so much easier for me than EC was. I haven’t lost much hair yet weirdly and still have eyebrows and lashes. I wonder when that will happen. I tend to have two pretty good weeks after the first one post-chemo, so looking forward to a few days in Wales at the end of August before treatment no. 4.
Sending love to you all. It is so good to see that you have all come through this so well and gives me great encouragement. Siân xxx
So.....here's the developments over the last few days.
Firstly, daughter didn't end up doing her driving test.....as she got the wrong test centre arrgghh!! So she had another crumble and lots of tears, but told her to just look at it as having had a city centre driving lesson (so not even going to consider it a 'failed' test). Think I've infected her with my chemo brain as this is SO something I would do now. She's been left a little deflated and not yet looking to rebook another test, but I'm gently nudging her towards it. However she is looking at booking some lessons in again with her driving instructor, so that's a good step.
Last week I received my surgery review notes and, guess what, for the first time ever bisphosphonates was mentioned in my treatment plan. So something completely new and, as before, nothing has been communicated to me lol! So yet another question on my already long list for my onco call tomorrow. If I do need the 6 monthly infusions then that's fine (pending dentist's OK of course) - just wish they'd give you a proper heads up though rather than just drop it in as a side note! One way or another I will eventually get my proper and complete treatment plan 🙂
Well today I was back in the office!! Only worked for the morning (which is the plan for my other 2 days, tomorrow and Wednesday) and then doing WFH to catch up as and when for my remaining hours. It was bonkers busy and by time I got home around 12.45 I had a throbbing head and aura migraine. But it was good to be doing my 'normal' stuff and getting back to dealing with clients and setting up cases. Think I'll be having a little early evening nap before bed at 9pm lol 🙂
@Teagold hope that pesky puppy has been rehomed now and you have your freedom of movement back. Hope you are continuing to heal well and it won't be too long before you can have that swim (for me it was just over 4 weeks post-surgery). I've been using a medical grade silicone gel which seems to be working wonders on my scar healing (Azally Advanced Scar Gel - from good old Amazon).
I will say that I had a fab time swimming and can't believe that I managed 34 x 25m lengths in our 45 minute session (well really it was 35 mins as 5 mins changing and got out 5 mins before end of session). I wasn't even out of breath which surprised me even more! Another session booked in for this Thursday for a Ladies Only lane swim session (I will be in the slow lane though!). Also just discovered that the leisure centre I use has a Health Suite with sauna, steam room and spa pool so definitely going to be checking that out too 🙂
Oh and in other news....my eyebrows are starting to sprout back! Very, very tiny hairs, but they're no longer completely bald at the ends. However, know I'll probably have them come and go for a time yet, but was lovely seeing them peeking through at the weekend. Eyelashes are still AWOL though 😞
Hope everyone else is doing well too and hope you all have a good week xx
Love Sam xx
Just typed a reply and pressed cancel by mistake so starting again 🙈.
Great to see everyone’s updates.
@CrazyCatLady glad that you have some clarification regarding the herceptin etc but think it’s ridiculous that you had to dig around for info. I think sometimes the medical people forget they deal with this daily as their bread and butter but a call/info can make or break our day/week. It’s all massive for us. Case in point this week with my elderly aunt who has been diagnosed with BC again after 23 years. Went this week for scan results to be told at the appointment they didn’t have the results and she will have to go back next week. Why not just cancel her appointment instead of having her going for nothing?
Hope you get on ok back at work. Just take it easy. Well done on the swimming. Sorry to hear of your daughter’s troubles. Hope she feels a bit better soon and that the driving test went well.
@Teagold hope you are feeling stronger every day post op and fingers crossed you get the other drain out tomorrow as that will make a big difference. Love the puppy analogy!
So glad you liked the article. It was the best thing re BC I have read in ages. Just ticked all the boxes.
Like you I am feeling a bit restless as want to get on with things but physically my body still has a way to go.
@Gelbel good for you considering recon. I am starting to think more about symmetrical surgery as one perky and one saggy doesn’t look great. Btw hair coming back with a vengeance everywhere!
My RTW meeting went ok so have agreed a 6 week phased return building up from 2 days to 3 and then 4 before FT. Will be wfh initially and they have also agreed that I won’t be travelling far or doing the very long hours my job sometimes requires for 3-6 months which takes a bit of pressure off. Did 2 days this week so it was good to have something else to focus on.
Onco meeting went ok. Next appointment in 6 months. That’s me done with the hospital for a while but still have that cast adrift feeling without the regular reassurance from the nurses. Am still very tired and my joints ache a lot but I know that’s sfx from chemo and Letrozole so just need to put on my big girl pants and get on with it. Like you @Teagold I am not so good at living in the moment and always trying to plan ahead.
Have another reflexology appointment to look forward to next week though with the therapist from the hospital who does private appointments so that gives me a bit of reassurance too I suppose.
Have a good day all.
@CrazyCatLady it’s lovely to hear from you, so sorry to hear that your daughter has been having such a tough time and really hope that her arms are healing up and that she will now get the right attention and support. Good luck for the driving test! Also glad to hear you have an appointment lined up next week and can get some clarity over dates etc. As with any part of this process, the uncertainty makes everything much more difficult doesn’t it.
I’m impressed at how fast you healed up from surgery, I certainly couldn’t do any cleaning at the moment (light or otherwise!) - I can just about wipe the kitchen surfaces 😂. I had one drain out on Monday but the other is still following me round - I’d say “like a little puppy” but I can think of nothing less like a puppy, it’s not cute, it’s not loveable and I’ll be glad to see the back of it! Friday, hopefully 🤞. I’m not feeling too bad though, less stiff and sore now and have been out for a few short walks though my surgeon is still very strict about going too far or doing too much. I’m feeling a bit restless, in fact hearing you and @Gelbel talk about swimming made me think ooh yes I’d love a swim, but appreciate that will have to wait a while. Very VERY relieved to find out that the 3 lymph nodes they took out were negative so I don’t need more surgery. I’m seeing my oncologist and radiotherapist next week to find out what happens next, so just now enjoying these few days of sunshine and trying not to think too far ahead.
@Gelbel sorry to hear you’ve still got some tummy trouble and hope they can sort this out for you soon. Also the toenail thing - OMG, mine are horrendous, I hadn’t even realised how bad until I removed the flaking black nail varnish - so I’m starting to think I’ll need to go and see someone too. My optician is badgering me for my next appointment and I’m overdue at the dentist too - all these things I’ve put off during treatment, will have to get back on it at some point but not quite up to it yet. Still getting used to the “perky boobs” - have a strange sensation if I go out walking that they might fall off!! But I hope that will ease off. As you say, it’s amazing what’s possible with reconstruction - my surgeon was telling me about the nipple reconstruction/tattooing they can do further down the line and said lots of her patients will come back many times over the years for tweaks and changes, all part of the “journey” and thank god for these fab doctors who make it their life’s work to help women going through this.
@Kaz11 how did you get on with your back to work chat? I read the article you sent round last week. It’s so spot on I feel like sending it to a select group of friends and family to read too. I probably won’t, but I just think it explains how I’m feeling way better than I ever could - and like you Sam I’m still on the rollercoaster so it’s a good reminder of how we still just need to be kind to ourselves and take things one step at a time. I’ve realised what an impatient person I had become - always living my life in the future and planning for things yet to come rather than really enjoying the moment. Already I can feel my mind racing ahead and fretting a bit about going back to work, and I haven’t even got my radiotherapy treatment plan yet. Anyway, it was a really helpful read and I have a feeling I’ll keep referring back to it so thanks for sharing and I hope you’re doing ok.
@Rainbow70 Sorry to hear you’ve been wobbly - those moments are so tough when they come and often unpredictable I know, I hope you’re feeling better and am sending a big hug your way.
Hope everyone else is well and enjoying some sunshine/swimming/strolling, whatever brings a smile.
Good morning all
@Gelbel hope they can get to the bottom of your indigestion issues - have you done a food diary to see if there are any things which may trigger it? I think chemo does affect our digestive tract so much, so perhaps it's a lingering side effect? And totally agree regarding the yukky toe nails - my big toe nail is hanging on in, but the rest have gone from my right foot. Only the pinky toe nail gone on the left though. Glad you managed to squeeze in a quick tidy up and it's made them look and feel better.
As for having perky boobs, good luck if that's what you decide to do. You've got plenty of time to weigh up the pros and cons and I'm sure your surgeon will give you some good advice about timelines, options and recovery info. I am really surprised how well mine have healed and as at today, they are pretty much fully healed (just the odd nerve twinges now and again). They are softening up a bit now too so not quite as solid and non-moving (and it's amazing when I take my bra off that they don't drop down to my waist any more lol!) And I've been lucky that I have still got full sensation both sides. Hubby still not quite ready to touch them (he think's they look as if they would be painful and it'd hurt) but he's coming around.
Hope recovery still going well for you @Teagold and drains not proving too troublesome. I'm just 4 weeks out of my surgery and by the 2nd week I was back to doing some light housework (unless you class doing a conservatory deep clean light!) I've also been driving again at around the 2 week mark, plus now starting my swimming again. I'm also starting back at work (in the office) from next week - probably just mornings only at first with some WFH mixed in. Apparently it's got really busy whilst I've been off so may take some getting used to all the frenzy again...but boss being really supportive and we doing the 'suck it and see' method and she'll adjust around me as to what I can manage.
@Kaz11 hope your onco appointment went well and you are enjoying the Moving On sessions. Guess I won't now be getting my Moving On referral (which my BCN was sending to me before the fiasco with my plan) as treatment ongoing now until next Spring. Will definitely be looking into them when I sign off from hospital visits. How did your return to work review go - have you started back now? If so, hope it's all going OK and not too tiring or stressful xx
@Rainbow70 hope you are doing better now after finishing rads and have you started the Moving On programme yet?
How are you going now @Leftygurl Hope all is going well for you xx
So today I will be going to a public swimming pool for the first time in a very, very long time! Also going with my daughter and if she can be brave enough to show her recent self-harming scars, then so can I 🙂
Unfortunately she had another incident (arm cutting) in early hours of Monday morning after she'd been out with a friend, and ended up at A&E. They have since written to her so she's now got a follow up appointment next week so they can do a full review of her mental health status. I'm hoping this may push forward her referral for a review of her possible ADAH diagnosis and, if this is the case, she can then perhaps start on more beneficial medication, rather than just the standard antidepressants.
However, as at today, she seems to have settled and being more positive - she's also got her 2nd driving test tomorrow so yet more stress for her. But fingers crossed, she'll be OK - we've been going out in my car over the last few days and she certainly is getting more confident in her driving now. I'll be going with her as she's doing the test in my car so at least I'll be with her to hopefully celebrate (or hugs if it doesn't go well).
I've now also got my onco phone appointment in for next Tuesday so hopefully will know fairly soon when herceptin will be starting....sooner it starts, means sooner it finishes!
Hope you all have a good day today - sending hugs and positivity your way xx
Love Sam xx
Hi @Teagold the things we go through for perky boobs eh? 😉 I'm glad you're managing ok and not feeling too bad after surgery. Drains are a bit of a palaver (says she who only had 1, but it was a naughty one!) but they will be out soon. Imagine that first drain free shower or bath. ❤ Keeping everything cross for clear nodes.
@CrazyCatLady /Sam. Isn't it always us that has to unearth the details if they become a bit difficult for the professionals? Well done for sticking at it and for a positive outcome. Another with perky ones eh?
I'm edging more towards a recon. Perhaps next summer. My pals asked if I'd have the other lifted - never thought of that. Perkiness and a flat tummy. My goodness!
Hubby's chiropodist was round today. Bless her, she did a quick job (as she had a full dairy) on my big toes and two other toes on my right foot that EC had killed. My big toenails had lifted. Yuk! TBH I didn't realise how bad they were (from chemo). Bit annoyed I had to pay for the privilege as the complimentary treatments still aren't being offered in my area. Still they feel, and look, better already.
Fingers X the indigestion is getting better - not lasting all day. When it kicks in - 🤮. I'm wondering now if it's the Anastrozole as it's not really improved much since I stopped rads and Ibandronic acid. My BCN will call this week to follow up after telling me to stop the tablets 4 weeks ago so there's some more sleuthing to be done to get to the cause.
Enjoy your weekends.
Love and hugs 🤗
Hi @hopeful1974 - I've already had 6 lots (in with my chemo) so couldn't say what sfx came from what. However from what I've heard from others, main sfx are feeling a bit tired and achy for a couple of days - like you are coming down with the flu. But after that it's all ok and back to normal. Guessing if mine start back up again in the next 2-3 weeks, it'll take me to around early/mid April.
Good luck with it and hope it treats you kindly too xx
Love Sam xx
@CrazyCatLady Phew! I am relieved for you that you know what is happening and that you don’t have to have the 14 rounds of chemo. I would hope that the Herceptin on its own had minimal side effects compared to the chemo. Good for you for persisting. My hospital is a bit like that on the admin side of things and it is hard to speak to the oncologist unless it is clinic day. Wishing you all the best with your ongoing treatment. May it treat you gently! I have to have the Herceptin and Perjeta until June next year, so a bit longer for me but I am really hoping it won’t be too bad. xxx
Good morning all 🙂 What a beautiful summer day we are having today...not! Guess it's going to be an ironing day for me lol 🙂
@Teagold so pleased surgery went well for you and hopefully the drains won't be in too long for you. I found it really surprising that we really can just manage on the OTC pain relief meds (despite everyone saying this really is all that's needed!) Lovely to have had your mum visit - my mum and close family friend popped in to see me around 4 days after my surgery and were pleasantly surprised at how well I was recovering - demonstrated by me swinging my right arm around lol 🙂
Oh and yes to the perky boobs!! Mine are like those of a 25 year old - and she's not having them back lol !! 🙂
I decided that I'd call the oncology team yesterday to double-check regarding whether herceptin was now stopped. Well spoke to a most formidable secretary to the consultants and she was huffing that my BCN should have clarified all my queries when I spoke to her the day before. I did say that she was as confused as me with regard to what issues my + / - results would actually mean and was raising it at the next MDT meeting. I also said I wanted to speak to someone to review my overall prognosis, recurrence %, tamoxifen % benefits, etc - which my onco already said he wouldn't be able to look at until surgery results were in. If I'd have known to ask my BCN these questions, then I would - as good as she is, she's not an oncologist!
Anyway, about 2 hours after my initial call, she called me back (all very apologetic and chirpy!) to say that she had spoken to one of the other onco consultants (mine's on holiday for 2 weeks) and it turns out I AM still going to be having my herceptin jabs - they'd only forgotten to add it to my treatment plan!! So my BCN would have been none the wiser - she can only relay the information she's been given! So I'm now to expect another call from onco in next 2 weeks to confirm when my herceptin jabs will start
So, ultimately, I am back on my original plan!! Phew - I can now breathe again!! So herceptin 3 weekly x 12 jabs, radiotherapy and 10 years of tamoxifen. Oh and also now got my radiotherapy planning appointment in for 21 September with surgery follow up on 4 February and 1st yearly mammogram next August too.
I'm still on the rollercoaster, but it's now just on the gentle bumps and not the high rise drops!!
Hope you all have as good a day as possible - and thank you for your support over the last few days (and before too!) xx
Love & hugs 🤗 xx
Just caught up on all your news - @CrazyCatLady / Sam first of all big big hugs to you, I know it’s not the result you were hoping for and to then have the further confusion over the +/- status is a layer of confusion you just don’t need at such an anxious time - rollercoaster is definitely the right word. I really really hope that they can clear things up for you today so that you know what the plan is and will keep everything crossed that they say you don’t need any additional treatment on top of what was already planned. As the others have said, still great news that it’s not in the lymph or spread to blood vessels and sounds like chemo still did a number on it - so well done again for getting through that because you really had it tough.
@hopeful1974 it’s great to hear from you and so pleased that the post-op treatment is going more smoothly and that you managed a break. Hope you got some of the good weather!
So I’m six days post-op and came home on Monday. I feel ok - drains on both sides which is a bit uncomfortable and makes me feel like a puppet! A bit stiff and sore but nothing major, managing ok with paracetamol and ibuprofen. The surgery seemed to go according to plan - old boobs gone, one lymph node removed and nice new boobs installed. Anxious wait now for results as depending on what the lymph node looks like I may need to go back and have more out or full clearance. Can’t do anything about it but hard to get it off my mind. Like you Sam I was hoping for pCR but my imaging wasn’t clear before surgery so now just really hoping I don’t need further surgery. Having to keep isolating for now just in case, which is a drag for the family but tbh I don’t have much energy to be out partying just now and haven’t felt up to visitors anyway, though my mum popped over today (surgeon-approved visit!) which was lovely.
On the plus side, v pleased with new boobs. Don’t think they’ve ever been this perky!
Thank god for the Olympics which have been brilliant to watch, a great distraction and also some really inspiring stories of people fighting back from illnesses and injuries to win medals. Obviously I’m not planning my campaign for Paris 2024 as I’ve never been any good at sport, but it does prompt me to keep up with my arm exercises!! 😂 I came round from my anaesthetic at about 10pm on Friday night (they didn’t start til 4) and stayed up pretty much all night watching the swimming and triathlon relay - amazing.
I hope everyone else is doing ok. Big hugs to all.
@CrazyCatLady that does sound really confusing. I do hope they can clarify it soon as 14 cycles of chemo is very different to only needing radiotherapy and hormone therapy. I think we are on enough of a rollercoaster without them adding to the uncertainty. Sending hugs and wishing you a speedy resolution. Siân xxx
Aw Hi Sian - sorry you've had to revisit chemo and I'm still on tenterhooks awaiting my final outcome. Good to hear that you have recovered well from surgery though.
Sounds like you are on TCHP regime (albeit reduced docetaxel and carboplatin) and hope it continues to treat you well. In my last 3 cycles of TCHP they dropped the carboplatin and then for the last one they also dropped the dox down by 10% so I only had 3-4 days of feeling woolly on the last 2 cycles (mainly from the steroids!).
Good to hear you managed a week away too! Can't beat just going away - anywhere - to recharge the batteries. I know my 3 day break was fabulous and really helped make me feel somewhat more human again.
Spoke to my BCN this afternoon as I'd not heard from her and she was very happy that all cancer is now gone (as am I obviously!) and glad that I'm recovering well from surgery and pretty much back to full movement both sides. She then went through the pathology report. Said they had re-tested the resected samples for receptor status and from the handwritten path report she said both residuals were ER+ and Her2- and my treatment plan now just outlined me needing radiotherapy and hormone treatment (Tamoxifen). There was no mention of the targeted therapy (Herceptin)!! She then said she would look on the typed report on the screen - and at this point she said 'oh, looks like the left 1cm residual is still showing it as being Her2+'.....so I am currently no further forward as I don't know for sure if my receptor status has changed!!! Apparently this does happen after neoadjuvant chemo - so she's going to double-check for me as if it IS still Her2+ then I will definitely be on the Kadcyla, but if not then I may not need any further targeted therapy. So blooming well confused....resorting to vodka and tonic tonight I think 🙂
However also confirmed that in the 1.5cm residual (right side ER+/PR+) it was only showing 10% proliferation...so really only a combined 1.5mm of disease left. For the troublesome left side with 1cm residual it only said it was 'localised' so she wasn't sure exactly what this meant. It was also confirmed that there was no vascular spread to nearby blood vessels, etc so that's good news too. She kept saying that chemo DID work as the tumors were no longer visible on the MRI but it's just microscopic leftovers in the residual elements.
She did say that the onco was as the meeting yesterday when my plan was discussed and there was no mention of further chemo being needed - but I still need to know if it's a + or a - (the typed up one could be a typo, or the handwritten one may not have been clear - who knows!).....aarrgghhh!!
Anyway, if it is Kadcyla for 14 cycles, then it is basically herceptin with a chemo agent (DM1) - so really would only be an extra 2 sessions for me (as opposed to the remaining 12 x 3 weekly herceptin jabs). Just means being back in the chemo ward again and delivery by infusion rather than a 10 min jab at home. Either way, both options are just the 'belt and braces' along with radiotherapy to keep any recurrence at bay.
Also told that radiotherapy appointment not likely to be until September....so yet more waiting ugh 😞
This little old rollercoaster ride has certainly had me hanging on and feeling queasy for the last few days xx
As and when I hear any more news, I'll obviously keep you all in the loop xx
Love to you all xx
PS - hope you are doing OK @Teagold - sending love & hugs your way xx
Hi @CrazyCatLady /Sam
Always one step forward one step back eh? It's good news in the bigger picture though. Let's hope your mind is working overtime of the amount of chemo you need. What chemo you do have, like @hopeful1974 has found (what marvellous news that you feel well and went away in the grand scheme of things) your oncologist might have something up their sleeve that can help you not suffer the sfx so badly. Perhaps the type of chemo is kinder in itself (like Pax was kinder than EC)?
Please let us know what your plan is once you have that conversation.
Love and hugs 🤗
I thought I’d let you know how I am getting on. After my mastectomy on 26th April, I recovered well and restarted chemo on 15/06. As I found the EC very hard, my oncologist promised to make this one more bearable for me. I started off with 80% dose of Docetaxel and 75% of Carboplatin. I had full doses of the Herceptin and Perjeta. It was a totally different experience for me to last time and I have felt so much better than I expected. I did have to wait 4.5 weeks for my second cycle as my neutrophils were not high enough and I had two extra G-CSF injections to help. On cycle 2, the Carboplatin was reduced to 50% to hopefully prevent that from happening again. I have felt so well that we even managed a week in Cornwall. I have 4 more cycles of the chemo + immunotherapy drugs combined and I will then just have the immunotherapy until June next year, so it will have been a year in total. @CrazyCatLady @Sam, I had one positive lymph node so they removed all of mine under that arm, but no more were found to be positive, thankfully. They did get clear margins but it was close. There was no more they could take, though, as I am now just skin and bone on that side! My tumour was grade 2, but they didn’t tell me a stage. I’m guessing it would be stage 2. I hope that your treatment is manageable. When I was told I would have to have 6 more chemos, I cried, but have now resigned myself to the idea. 14 seems like a lot given the stage of your cancer but perhaps it won’t be that many. If it is, I hope it will be tolerable for you and different to last time. As we know, each chemo refine affects everyone differently. Sending you all lots of love and best wishes. Siân xxx
Good morning @Kaz11 - thank you my lovely xx
Well no call yesterday (no surprise) so more pacing today I think. However, got some sleep and getting my head around it all. Of course I could be totally jumping the gun and it depends on what my pathology results show and how the onco decides about my preventative treatment. I could (fingers crossed) still just need the herceptin jabs. But Kadcyla adds a further 11% to reducing my recurrence risk - so it's sort of a no-brainer really!
The surgeon said there are definitely no obvious cancer cells left in my body, and because I'm node negative and at surgery what they removed they said would be classed as Stage 1/Grade 2 it would be classed as very early BC. Of course they don't give you the stage beforehand but, based on the images taken, it would have been a 2A. Think the TNM after surgery would be T1bN0M0 and T1cN0M0 - so on this basis it is still good news.
As you know, I had my heart set on getting my PCR - so think this is why I felt so bad yesterday. But today is a new day so putting on my BGPs and getting on with it. Daughter also promised to call her GP today too (and she still went to work last night - so proud of her for doing that).
Thank you and have a good day xx
Love Sam xx
Aw Sam I am so sorry I didn’t appreciate all that. I was Her2- so didn’t appreciate the ramifications of the Her2+ situation and the additional treatment that involves over and above herceptin. No wonder you are pacing the floor, totally understandable. And waiting on a call is torture.
My heart goes out to you. No one would want to have more chemo having been through it already. Sending hugs and hope you get a clearer picture after your call with the BCN.
Thank you @Kaz11 - however I may not be out of the woods just yet as it could be I'll have to do 14 cycles of Kadcyla (chemo + herceptin) which appears to be standard treatment for Her2+ with residual after neoadjuvant chemo and surgery 😞 The Katherine trial is the one this has come from (https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-tdm1-after-surgery-breas...).
So had a little cry feeling sorry for myself and calculating that this would mean IV infusions every 3 weeks until next May. Know it is supposed to be the bees-knees for Her2+ treatment, but the thought of having a further 14 chemo cycles fills me with absolute terror - and all the usual sfx that come with it too (and we all know how I fared in my first 6 cycles!).
So now pacing the floors and worrying until I get the call from my BCN - which has been promised for today but I know this is her clinic day and she doesn't normally do call back today.
Feeling a little bit floored tbh xx
That’s fantastic news that the cancer has all gone and nothing in your lymph which is just brilliant. I am so so pleased for you. Big hugs to you. 🤗
Hopefully you won’t have too many radiotherapy sessions but I know it varies in different parts of the UK. Mine was concentrated into 5 instead of 15 which I think some hospitals have adopted during covid. I was also told it was to save on the travelling every day too.
I hope I didn’t upset everyone too much with the article which I posted yesterday. It just exactly summed up how I feel post treatment so just wanted to reassure everyone that it’s ok to feel that way. Also making enquiries today about post treatment courses at the Maggies Centre in Glasgow.
Well done again @CrazyCatLady so chuffed for you.
Take care everyone.
Hello everyone - hope you are all doing well today xx
So, the results are in....not quite the PCR I'd hoped for as the found residual in both breasts (1.5cm and 1cm). Bum 😞 However no nodes involved and the cancer is now all gone from my body!!!
So now awaiting call from my BCN later to confirm what's happening next with regard to H&P and radiotherapy planning. Onwards and upwards to the next stage of this journey xx
Hello lovely ladies
Thanks @Kaz11 for posting link to article . A very emotional read and your right it definitely does hit the nail on the head. I had quite a bad week last week after finishing rads .. the waves of anxiety /emotions are just so overwhelming sometimes aren’t they .
I hope you enjoyed your massage this afternoon and it helped you relax . Sorry to hear you feel anxious about return to work meeting .. hopefully it will be ok but as you said you can seek advice if needed .. 🤞🤞you won’t . Finished virgin river yes sad story line , I won’t spoil the rest for you either .
@CrazyCatLady you look fabulous in the photos and thanks for the time line eyebrows and lashes . Hope tomorrow goes ok for you for your results , will be thinking of you 💕
@Teagoldhope you are feeling stronger each day 💕 And so pleased @Gelbel you enjoyed your swim.
Sending love 🌈xx
I can't read that paper without crying - it so hits the nail on the head. I shared with my team at work and my closest friends.
Hi @Kaz11 - that was a good read....got me teary though as I'm still in the active treatment part of the roller coaster ride - "On a rollercoaster, you will be strapped in and sent of into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting you head down and dealing with it as best you can at the time."
Hopefully my positive mindset will help me when my end of treatment comes, but that transcript resonated so much with me about where I am now and where I'm going to be when it all 'finishes'. Going to borrow this link to share with my family members to give them a heads up as to what may be coming along later down the line.
Thank you and have a good week xx
Love Sam xx
Here is the link now, hope it works.
Morning everyone and I hope you all had a nice weekend
Just wanted to share the link below with you all from the Moving Forward course. I just felt that this doc hit the nail on the head with everything I was feeling and it reassured me that I wasn’t losing the plot having all these emotions. The article is quite long but definitely worth a read in my opinion.
@Gelbel hope you get on ok today with the swimming. I haven’t done much variation in my exercise other than walking but going to give yoga a try.
@Teagold hope all went ok with your surgery and you are feeling a bit stronger every day.
@CrazyCatLady love the pics! You look so good. I think all our hair regrowth on our heads looks so similar at this stage. We are all silver foxes!!! (trying to make myself feel better about the grey but not sure I am convincing myself!) Like you I sometimes think I am doing a bit too much and then feel it big time the next day. However if I don’t keep busy I analyse and think too much so it’s a bit of a catch 22. Having my return to work meeting this week so a bit anxious about that. Likely phased return starting next week. My salary has already been cut which I wasn’t expecting as I have hit the 6 months sick leave mark which is the max in my workplace. I did work single days though which I was told I would be paid for so I may be calling MacMillan for advice. It’s a stress I don’t need right now. A therapist from the hospital is coming this afternoon to give me a private foot massage so that should relax me hopefully.
@Rainbow70 hope all good with you. I am now about to start ep 8 of Virgin River so am nearly finished series 3 although one storyline is a bit upsetting which you will know what I am talking about but don’t want to give it away in case anyone else is watching it.
Will send the article link separately as I must have done something wrong in trying to copy and paste and don’t want to lose this message.
love and hugs Kaz11 x
The recent hot weather's only given me a heat rash on part of my rads area. It's driving me nuts - been on antihistamines. I reached for the aloe vera gel the other day and that has made a huge difference. So much so I have packed my gym bag for swimming on Monday. I'll put up with the shower scrunchy type material the Knitted Boobs people sent me though Mum has given me the money for an aqua boob.
Happy weekend everyone.
Love and hugs 🤗
Just to say thanks for all the lovely messages re surgery. Been awake since 6am watching the Olympics, brilliant distraction! Also, @CrazyCatLady good luck for your results next week. I’ll update when I can.
Big hugs to you all
Hello again my lovelies - lol nothing for weeks and now a flurry of posts (oopsie!) xx
Just thought I'd share a photo of me sans wig which may inspire those who are nervous about going wig free a little bit of confidence. There's lots of grey fluff and still a bit thin on top, but it was just so good not having to bother covering up! Although make up (from the Look Good Feel Better goodie bag) was definitely needed 🙂
So here's how it was just a week after finishing chemo on 4 June (and I went swimming just a few days later on my mini-break without a swim cap!)
And this was me 10 days ago, and just 8 days after surgery and you can see how much it's grown already - so you can do it!
Love to you all xx
Good morning @Rainbow70 - well done on finishing your rads and glad you got the 5 day dose intensive sessions and thank you for giving me hope that this may be my path too. I guess we'll find out how much the tiredness hits soon enough. I'm still signed off from surgery but think I'll do some WFH hours next week before I become unhinged due to boredom! I'm hoping to work through my rads and then as and when the tiredness crash comes, I've accumulated some TOIL to use use so I can do some short days to get some napping done.
Thank you too for your kind thoughts for me for results day - I'm cautiously optimistic but always that little niggle that there's still some cells lurking. But I got my results appointment letter last week (same day as dressings came off) and I guess if they did need to do more surgery, they'd have called me already.
Think my recovery is going well although still have a whole wodge of glue on the left side (all gone from the right side) so guess whichever surgeon did my left was super generous with the glue application lol! I've obviously got full movement back as yesterday did a 2 hour conservatory cleaning session....so lots of window cleaning which I guess counts towards my arm exercises 🙂
Good luck with getting over the rads sfx and hope the 'crash' isn't too bad when and if it comes.
Take care and have a good weekend xx
Love Sam xx
Good morning @Kaz11 - well done you and your tentative steps at going wig free! It will come and you will be surprised how easy it is once you've done it in public for the first time (oh...that sounds a bit wrong lol!) And good news on the brows/lashes coming back and long may it continue xx
I'm a bit achy today as I started cleaning my conservatory - sat having my morning coffee in there and just couldn't stand the mess any longer! Did a 2 hour stint and got about half of it done....so today is a rest day and seeing what's on Netflix 🙂
Take care and have a good weekend xx
Love Sam xx
Hope you are all doing ok? Been catching up with all the inspirational posts . @Kaz11 Deffo can relate to having a lack of patience with some people and them thinking everything is back to normal now treatment is over !! This emotional rollercoaster we are all on is some ride isn’t it ..it’s good we have this forum to all support each other. Have you finished virgin river ? We finished it last night !
Finished my rads last Friday .. skin has been ok bit achy / tingly and occasional nausea . I was told side effects would peak in two weeks !! @CrazyCatLady I had both sides treated and had the 5 sessions … hope you are doing ok after your surgery and will be thinking of you for results day 💕. @TeagoldSending love for tomorrow will be thinking of you 💕. @Gelbel You look fabulous on the photo .
Hello lovely ladies
It always makes me feel so much better getting all this support from my fellow BC chums when I feel like I am on a bit of a dip. I so appreciate all the lovely comments from @CrazyCatLady and @Teagold today. As you say this is a great place to rant and get things off our chests (pardon the pun from me this time @CrazyCatLady !). Think I always feel a tad guilty if I moan about friends who in general have been there for me but as I said sometimes the tolerance level is just not there for trivia! So on the same wavelength as you too @Teagold in that some long standing friends have been posted missing while some others that you would not expect have really stepped up to the plate. People never fail to surprise me and not always in a good way.
I read an article today on the Moving Forward course run by Breast Cancer Now by a doctor about how you feel post treatment and it so ticked all the boxes for me. I kept nodding my head as I read it - feeling lost, emotional, cast adrift after the comfort zone if you can call it that of regular appointments and reassurance from the medical teams. Tick ✔️ to all of the above. I wish my friends could read it as apart from one or 2 (one used to be a nurse) they all seem to think that treatment is over and I should now be “normal”. If I look like I might cry they are like “come on now, treatment is over” in a pull yourself together kind of way. The article I read today said that post treatment can be just as hard if not more so and I can so relate to that. Didn’t expect to feel so tired post bone strengthening and I still do. It’s almost been a reminder that there is still a way to go in recovering.
Anyway I digress. I went sans wig today when a friend over at mine for coffee. Not sure if I am ready to do the big reveal in public yet but it’s a start and she was amazed at how much my hair had grown back. It was you lovely ladies who inspired me to do it so thank you! While looking in the mirror today you would have thought I had eyeliner on but it was actually my dark eyelashes. It’s so long since I had seen them I had forgotten what a full (albeit short) set looks like. That’s after 2 weeks growth and like my eyebrows they literally started coming back overnight. Thanks so much @CrazyCatLady for the timelines re the growth which is good to know. Certainly won’t be plucking my brows until they are fully back in no matter how wild they look!
Glad you pre-op checks went ok @Teagold so will be thinking about you on Friday and hope all goes well with the surgery.
@CrazyCatLady hope you get good results with your pathology report and fingers crossed with your rads that you get the 5 doses like me instead of the 15.
Thanks again for all your support and understanding, it means the world.
love Kaz11 x
Hello @Gelbel - well done you!! You look fabulous and such a beaming and happy smile 🙂 Been doing the same myself and it's brilliant and no-one looks twice.
Out in a pub beer garden last Tuesday (only 8 days post-surgery) and thought sod it, can't be bothered....and it was fab 🙂 However now realise that after over 6 months of abstaining from alcohol, my limit is now only 2 glasses of wine lol
Hope you've got to the other side of rads now and everything is settling down well. Guess mine is coming in the next 5-6 weeks or so, so just awaiting my planning appointment coming through once I get handed back to oncology from surgery (pathology results due next Tuesday).
Already seem to have got back full movement so hopefully won't be any issues ref positioning with arms over my head. Hoping they put me on the 5 day intensive dosing regime rather than the 15 days, but guess it depends on whether they think my body can take it with it being done both sides.
Enjoy the rest of your week and weekend xx
Hello @Kaz11 - hope the effects of the Zometa infusion has worn off now and that you are managing to get some more walking in (particularly now we've got the more tolerable weather!) I so get what you say about people thinking we are 'back to normal' and don't get that our heads are still all over the place. One of my relatives said to me last week that it must be good to know it's all done with now I'd had my surgery. So when I explained that I still have radiotherapy to go, plus a further 9 months of herceptin/perjeta treatments and upto 10 years on tamoxifen, she was rather taken aback! They don't understand that we will be dealing with this for many years to come...not just once the cancer is 'removed'!
Love your description of your eyebrows lol - mine are now definitely diminishing, yet head hair is coming on strong. Ah well, guess I'll just have to be patient and wait for the brow and lash regrowth cycles to settle down over the next few months (daughter looked it up and apparently eyebrow growth cycle is over 64 days and eyelashes is 4-5 weeks). Looks like they'll grow and shed for a few cycles until they all settle down.
It appears that both @Gelbel and I are on the same path with regard to going headwear free! You should definitely do it! No faffing around with wigs/scarves and it's so much cooler....and no-one will raise an eyebrow (pardon the pun lol!). It is so liberating and once you've done it, you won't look back 🙂
Enjoy the rest of the week and weekend xx
Hello @Teagold - good luck for your surgery and hope all goes well for you!! After chemo it is a total doddle! Worst bit for me was having to sleep on my back....just can't do it! Sorry to hear you have had a wobble about your results, but they are still very positive and surgery can hopefully get rid of any stragglers. And it's perfectly fine to have these wobbles too (as the other ladies have said) - we all get them. Got another 6 days till I get my post-surgery results so trying to keep positive and trust that chemo and surgery has done the job - but if not, then I'll cross that bridge when it comes. Worrying doesn't make any difference to what it will be - but I know it is so much easier to say than do! I think we can sometimes overthink everything and probably guilty of doing worst case scenarios in our heads.
Good to hear your daughter is recovering well and no need for surgery. Must be such a relief for you xx
Love your description of your fuzzy duckling hair - mine is exactly the same lol 🙂 And I do think there is a hint of curl coming through already! I'm not going to bother getting anything tidied up yet, just going to let it do what it wants for a while and see where it ends up. I've found a conditioner which has a biotin boost (Hask which I picked up in Tesco) so just starting to use this but just once a week for now and see what happens. The Lush shampoo bar also seems to be working well as even my husband commented that it's coming back thick and fast now! And he doesn't normally notice anything lol.
Sounds like myself and @Gelbel are following the same path with regards to going out au naturel! I spent a couple of hours at a works leaving do in the pub beer garden on Tuesday and went bare headed and no-one batted an eyelid! Also now go shopping without headwear....it's so much easier and very liberating (as Angela says!).
Unfortunately my eyebrows/lashes are vanishing rapidly 😞 But using the It Brow Power pencil from Boots which gives a really natural finish to my drawn on brows. Also found some 3/4 length false lashes which are much easier to put on as don't need to go right to the inside edge of the eye.
So I'm now day 16 post-surgery and seems to be continuing to heal well and have been doing my exercises religiously and looks like I've pretty much got full movement back on both sides (apart from still having some tenderness around the snb scars and nipples). Have already had some of the nerve pains which do make you catch your breath, but literally only last 1-2 seconds. I've now started using some surgical grade silicon gel on my scars to hopefully get them to heal a little better. However they did apparently go completely overboard on the left side as I'm still covered in the surgical glue! It's not shifting at all - yet on the right side it's all nearly completely gone apart from at the T junction.
Wishing you all the best for surgery and here's to a speedy healing for you too xx
Love Sam xx
Hi ladies, thanks for your lovely replies.
@Gelbel that’s a fab photo, what a brilliant smile. You look radiant. Inspired by this, yesterday I finally let me husband at me with the scissors and he trimmed my long crazy strands so my hair now looks a tiny bit more presentable and I reckon in a few weeks I might be able to go out without cap, wig or scarf. Sounds like you had a fab evening and have a great bunch of mates.
@Kaz11 - you would be the first to say to me, or anyone else here, that you are NOT being a moaning Minnie, quite the opposite. You are an amazing brave strong person, look how much you’ve been through. You have every right to be fed up about listening to a friend bending your ear about something trivial. I think this forum is the best place to rant about stuff like that as it seems something that everyone goes through to some degree or another. One of my oldest friends has been so distant and non-communicative since my diagnosis, it’s really hurtful. I got one text in early March asking how I was, replied and said how helpful it was to get regular messages and please stay in touch etc, then nothing since. Even when I posted a short update to one of our group chats about my treatment, still nothing. Can’t really believe it. I don’t believe there’s anything to be gained from telling her, but it has really left me feeling upset and hard to imagine feeling the same about our friendship in future - but I’m sure I’ll get past that. By contrast, other friends - including some from work whom I’ve only known less than a couple of years - have been so amazing keeping in regular contact even when I don’t reply to every single text or email, it really has surprised me to see who stepped up and who didn’t. Anyway, again I’m absolutely not trying to make this all about me or dissolve into a nasty rant, but just to say that you’re not alone in having to navigate some of this difficult business with friends who don’t get it, and you’re dealing with it as well as anyone can.
Thanks also for the reassuring words re exercising etc, that’s helpful. I guess it will be what it will be and I’ll have to try and stay focused on healing.
So, had my pre-op tests yesterday and now just hope they all come back ok so that there are no delays. I should probably start making a list of stuff to pack and getting organised, but instead we’ve been decorating which is a brilliant distraction 😂.
I hope everyone is doing ok this week, big hugs to all.
What a fantastic pic @Gelbel
You look amazing, like the wonderful brave lady you are. Lovely to see you smiling so broadly. So glad you had a great day with your friends.
You have inspired me to go wig free hopefully in the not too distant future.
Like you I would be nervous about seeing people for the first time who didn’t know but I’ll need to take the plunge sometime!
Massive hugs to you.
I will keep everything crossed for a brilliant outcome for you after all you've been through.
Loving your eyebrow experience @Kaz11 I can't believe my 'not really existent before chemo' ones are coming back darkish and they can be seen with no make-up on them.
I do use a bit of coloured mousse on my hair (found a way to tone down the white/grey without colouring my skin). Here's me on Saturday - I took 7 of my Angela's Angels out to thank them for being amazing support. Couldn't call it a thank you as they refused to be thanked. Excuse the big grin - photo cropped from a selfie with 2 others.
I had/we all had a fab time. I even braved the local pub (I didn't drink - still off it til tomorrow) and saw friends' husbands for the first time since last summer. They were lovely - one was quite teary eyed claimong he couldn't believe how "amazing you look" and how lovely it was to see me and all that malarkey. They'd had a lot to drink while the girls were eating!
Even the local village idiots didn't say anything or look (obviously) twice.
I had been dreading seeing acquaintances or friends who don't know.
Love and hugs. 🤗
Hi @Teagold lovely to get your update.
Hope all goes well for your op and there are no delays. Surgery is hardly something any of us looked forward to but I think having a delay would be a very sore one to take at this stage. I think the fact you have been exercising will help you greatly. I was lucky (!) in that I had my surgery before anything else so didn’t have the fatigue of treatment to contend with so went into it fully fit so to speak. They don’t mess about nowadays and especially during covid times will want you to be in hospital for the minimum time possible. I had my op on the Friday night, was showering myself the next day (I didn’t have any drains with my implant though) and home on the Sunday. I could have got home on the Saturday night but felt that was a bit quick as I didn’t have anyone at home to help me. However I was back walking (only a short distance) but in a matter of days. I made sure there was someone walking beside me though in case I felt a bit off and needed their support. I honestly found the surgery easier than the treatment but as I say I didn’t have treatment beforehand. You are a strong lady so you will be back on your feet in no time I am sure. Totally understandable the apprehension about the pathology results. I think everyone is exactly the same. I remember the relief at certain results and then the devastation when I found out I had to get chemo. It’s totally nerve wracking waiting on the results.
Also get where you are coming from re the new hair. I keep touching my head too - maybe it’s a bit of disbelief that it’s coming back as I was always worried it might not. However anything which stimulates the follicles is a good thing so I will keep rubbing my head.
I too had long strands left from my original hair as I didn’t shave my head. However one of the nurses trimmed them when I was in getting my portacath removed as they had started to tangle when I was washing the new duckdown on my head.
Funny re your eyebrows as mine disappeared and are coming back at different rates on each side too - odd isn’t it.
Feel a bit strange now that I don’t have another treatment for a while as that was my new normal for so long. Don’t miss the cannulas, chemo etc but miss my comfort blanket of the nurses big time and emotionally still up and down. No particular trigger - like you it can be a text, music, a photo or a kind word and that’s the floodgates opened so don’t beat yourself up about it. Perfectly normal when you think about all we have been through. I felt bad as I lost it a bit last night with a friend who was moaning about trivia. I did apologise but my tolerance is not there at the moment for the small stuff which is nothing in the grand scheme of things. Sorry if that sounds horrible and uncaring but I don’t feel that surgery/chemo/rads and all the psychological effects of all that are in the same league as putting on a wee bit of weight. My friends don’t quite seem to get that I am not “me” yet. Just because active treatment done doesn’t mean I am not still dealing with the effects of it all. Anyway I’ll shut up as sounding a moaning minnie now and I didn’t mean to.
Sending you big hugs and positive vibes for your surgery.
Hope everyone else is doing ok in this heat.
Also, forgot to say - @Kaz11 you made me laugh with your Denis Healy eyebrows! I might have already mentioned it but one of mine is growing back with a vengeance and the other barely showing. Very odd. But like you, I’m not going to pluck anything - just grateful to see new hair coming through. And new baby eyelashes I just noticed this weekend too!! Xx
@Gelbel - glad the 🤢 is easing off now. Also very inspired by your hair stories. I think yours must be quite a lot longer and thicker than mine as I remember it started growing back some weeks before mine did. What a lovely thought to be able to go out without hat or wig! You’re so brave. I was also remembering recently that feeling of running a hand through my hair and wondering how long it will be before I can do that. At the moment I quite enjoy stroking my “fuzzy duckling” head, and my kids seem to enjoy it too! My husband is threatening to get the scissors/clippers out because now that I’ve got regrowth, the random longer strands left from cold capping look a bit ridiculous. But I’m holding off get anything cut until after my op.
@Kaz11 sorry to hear you’ve felt wiped after the injection, did the nurses say how long that might last? Hopefully you were able to stay on the sofa and get your Virgin River fix though! I completely identify with what you were saying also about anxiety etc. Since finishing chemo and feeling a bit more “normal” (ie not just “survive today” mode…) I find my mind is also more active and so a lot of the anxiety/upset that I didn’t really have - or have time for - at the start seems to be coming out now. I’m also a bit weepier than I was - just randomly, a text message from a friend might set me off or a song on the radio. All v normal I guess, it’s got to come out somehow. I can imagine it must have been comforting to be back in the hospital last week seeing the nurses etc. I’m not missing chemo, but something about the structure and the regular contact did become reassuring and this period between chemo and surgery has felt quite odd.
My surgery is scheduled on Friday this week. Going in tomorrow for pre-op tests so at this stage just hoping that nothing gets derailed due to Covid as it all starts to sound quite doom and gloom out there. I’m not so worried about having the operation as I am about pathology results and recovery time. For pathology, so anxious that they’ll say I still had a lot of residual disease or that it will still be in the nodes they take out and then I’ll need more surgery. But, nothing I can do about it. For recovery time, because it’s been lovely having more energy these past few weeks I’ve enjoyed getting out for walks, a couple of short (and VERY slow) runs, doing yoga etc and I’m guessing I won’t be able to do any of that for ages. Keeping moving is a good way of distracting myself from the mind-whirring so I’m hoping at least that I can be out for walks before too long - any top tips here from those who have already had surgery would be awesome (I think nearly everyone here has had surgery now, am I the last?).
Hope everyone is doing ok and that the cooler weather is helping - dramatic storms here all day yesterday but it’s definitely easier to sleep!
Hugs to all
Hope you are all enjoying the sunshine. Never thought I would say this but am actually finding it too hot! Sleep very difficult as a result but need to enjoy the good weather while it is here.
@Gelbel what a brave person you are going out au naturale after your haircut. Massive pat on the back to you doing all those things without a wig, that is just fantastic. Well done you. I hope one day I can be as brave. Maybe after my trim at the hairdressers at the end of August I will take the plunge. Getting a bit more used to the silver tufts on my head - wouldn’t go as far as to say I like them but it’s what I’m stuck with at the moment so need to accept it.
Was back at the hospital on Thursday for first 6 monthly dose of the bone strengthening drug - Zometa. Was nice to see the nurses again and get some questions answered. I miss the comfort blanket of seeing them weekly. One of the nurses said I looked like Dennis Healy with my eyebrows! In the last week to 10 days my eyebrows and eyelashes have come back pretty well. Eyebrows are a bit unruly and sprouting all over the place even well under their natural line. However I am just so chuffed to see them coming back (and dark not grey yay!) that I don’t want to pluck them. They may resemble a couple of black slugs by the time they have finished growing back but they are framing my face again and that’s a massive plus.
I was told I would have flu like symptoms for a couple of days post Zometa. Joints ache anyway so the extra stiffness was not much of a surprise but have felt gubbed. Tiredness not helped by the heat so have tried not to do too much although my mind races if I am idle for too long. Tummy a bit iffy again so not sure if it’s the Zometa or the calcium tablets I have to take for a month so I can see me being back on the lactulose - happy days!
Next stop is follow up with onco in a couple of weeks. Also got my next appointment for Zometa in January 2022. Nurse said covid not going away so even then she thinks I will need a routine test ahead of my appointment.
Anyway happy Sunday evening and enjoy the sunshine.
love and hugs
Touch wood, the sickness is gradually getting better. Please let it be rads. 🙏 The extreme tiredness is on the wane too.
I had my haircut on Monday - stop it at the back - to give some shape over my ears and into my nape. Today I let Mr Hermes do a collection when I was wigless and hatless - not a bat of an eyelid. A nosy neighbour went by at the same time - nothing.
So I got my big girl pants on and went to Aldi with nothing on my head. Not a tiny glance. Head was rather cold by the fridges!!!
It was very liberating. I was grinning like mad behind my mask.
Interesting to see all bar 1 customer had their masks on. The one that didn't? Younger woman with hair extensions, full face of make-up with 6" false eyelashes and the biggest trout pout I've seen outside of a magazine or TV. Why didn't that surprise me?
Hope everyone is well and continues to recover from your treatment and side effects.
Love and hugs 🤗
@Teagold love the descriptions of your radioactive clips! Gave me a laugh this morning thinking of you potentially setting off alarms in all sorts of places! 🙈
I had markers inserted at the time of my biopsies but it was to indicate where the tumours were for additional scans. I was told they would stay in if I got lumps removed (at least I think that’s what was said - chemo brain!!!) and they would be removed with everything else if I got a mastectomy so they would have gone in the bin with the rest as I had a mastectomy. It was an injection I got for tracing the lymph. It’s interesting to see how they approach things differently even in separate areas of the UK.
Have walked every day this week but legs felt it big time last night. They were aching post chemo anyway and apparently the letrozole causes aching joints too so not sure which is the culprit. Been having a soak in the bath at night to help but actually had difficulty getting out of the bath last night which was a bit concerning. Don’t think I am quite ready for one of those devices that helps you out of the bath yet - I am 55 not 75! Finding my right hand very stiff when I wake up in the morning and my index finger more so which is weird. Still have neuropathy too.
Like you I went to the gym and classes pre lockdown but although the local sports centre is open again I am still too nervous to go because my immune system could still be compromised so may do some youtube vids as you suggest. Onco said I should do yoga and there is a video with the Moving Forward course.
Totally with you re the hospital appointments. Like you was hardly at doc before and since November it has been constant hospital visits. It probably sounds pathetic but in a strange way I am looking forward to going to the hospital on Thursday for bone strengthening drug- not for the drug itself obvs but to see the nurses again and get some reassurance. I miss that comfort blanket too so much. Am told I will feel rotten after the drug so can see me lying on the sofa bingeing on Virgin River next weekend!
My anxiety which I have had on and off for years is kicking in again and could cry at the drop of a hat. Not sure if it is the letrozole which has a massive list of sfx or if I am feeling that way anyway. Someone told me that post treatment you kind of go through a grieving process. I hate feeling rubbish (who does) so always give myself a hard time for being that way - see what I mean about not taking my own advice!
The complementary therapist from the hospital called me last week and she does private sessions so I am treating myself to a reflexology session in a couple of weeks. She will come to my house which is great.
@Teagold I think you will be surprised how much you can do post surgery as you are obviously an active person so am sure you will be back on your feet quickly.
@Gelbel sorry to hear about the sickness. Hope you feel a bit better over the weekend. Re the Moving Forward course I just signed up for this myself via Breast Cancer Now and like this forum they put you in a group and private message you with the info. It is a separate forum to this one but the same process. As I say I did this myself it wasn’t a course that I was put forward for via my hospital so anyone can do the same.
Hope everyone enjoys the sun safely this weekend. I will be covering myself in factor 50 shortly.
love to everyone
Thanks @Kaz11 and @Gelbel for your lovely and replies and understanding. You’re so right - we hardly get time to get our heads round diagnosis before the conveyor belt of treatment starts and that becomes the focus. 43 appointments!! That says it all. It is such a comfort blanket having the rhythm of appointments and regular contact with the medical teams isn’t it. Before all this, I was someone who could go years without seeing the GP or even taking a painkiller, now I think the longest I’ve gone without some sort of hospital/doctor appointment is six days in the last five months and I really don’t mind being in such close and frequent contact, makes me feel safe. And @Kaz11 you’re so right about us being hard on ourselves and not taking the advice we give to others! I think whenever the routine shifts in any way - gap between treatments or end of treatment - it is really tough emotionally and just takes time to get used to the change. I hope you’re doing ok and that the MO course helps.
@Gelbel really sorry to hear about the 🤢 you’ve been having. Seems particularly unfair to have got through chemo and then have this to deal with now as I remember you saying you had a fairly cast iron stomach before - hope it settles down now that rads finished and with a break from the drugs.
@Kaz11 like you, I’m trying to get out for more exercise now whilst I feel well enough. I read somewhere that walking regularly can really reduce risk of recurrence. I’m mindful that I’ll probably have a spell of not being able to do much (if anything!) after surgery so will try to get as many steps under my belt as I can in the next two weeks. I’ve also found some of the online yoga vids really helpful to do, have never been into yoga really but doing it at home with a YouTube video seems to suit me and have enjoyed it. I’d normally be in the gym a couple of times a week but haven’t been since last November when we went into Tier 4 lockdown and don’t want to risk it now with covid on the rise etc. Anyway, at the moment feels better to be doing gentler stuff rather than pounding on a treadmill which I don’t think I’m quite up to!!
I had my scout marker put in yesterday. It’s a little radioactive clip that helps the surgeon find my lymph node. So the radiologist inserted this thing, then tested with a probe to make sure it beeps when activated by the radar. Very strange and quite funny! I feel like I would set off the security barriers in shops but he reassured me not. It was the same radiologist I had the day I was first diagnosed, so last time I saw him I was in a complete tailspin but I remember him saying then “whatever this is, we can treat it” and it was the best thing I’d heard so far that day - he was lovely. Also made me laugh saying the radioactive clip was trackable by the government so they could now follow my every move - would be far more interesting if I went anywhere! But we are hunkering down now for pre-surgery isolation so apart from the local park and a few shops, not much of interest!
Hope everyone is doing ok and enjoy the sunshine this weekend. Factor 50 definitely out in force here.
Love to all
Hey @Teagold - totally understandable that everything is catching up with you. I suspect it does with all of us, if it hasn't already. So rant, rage, cry, dance do whatever you need to do. And as for getting fixated we do, it's things we can hold onto in the roller coaster of treatment and appointments.
@CrazyCatLady Hello to you and your new twins! Glad to hear that you are doing well.
@Kaz11 Glad to hear you are on the Moving On Course so quickly. I've found out I won't be invited to mine for a while as the post treatment onc appointment triggers it where I am - that appointment will not be for 6-8 weeks. 😲
Not long back from my last rads. Was more emotional yesterday than today. All I can think about today is I blooming well did this. We all did!
I am a tad scared as the comfort blanket of my amazing medical team is being packed away. I know they are still there for me - I just won’t see them or speak to them for a while instead of several times a week. I worked it out - I had 43 appointments since I called my GP!
I'm feeling more nauseous than ever I did on chemo. TBH I've been sick a couple of times and could heave a lot of the time. So my BCN checked with my onc and I've stopped the biphosphonates for 4 weeks as it could be them. Though they think it's the rads. Least we'll find out one way or the other over the next few weeks.
So now it's seeing whatever physically my post-treatment best will be and let my head get to grips with everything that’s happened – I’ve not really had time to digest it with the merry-go-round of appointments.
Have a lovely weekend ladies. Enjoy the weather - remember your factor 50 if you've been told to use it!
Love and hugs 🤗
You are not moaning at all so please don’t be hard on yourself. Totally understandable you have had a wobble. I think we are all on an emotional rollercoaster at the moment. Like you I definitely feel it’s all catching up with me now mentally. Was concentrating on the physical side for so long. I have too much time to think at the moment so will be increasing my work hours to give me another focus. Think it’s very tempting to google but remember that each of our cases of BC are different so you might only get general info from google which can sometimes set the hares running as it won’t be specific to you.
Know what you mean re the duckling growth on your head which is such a good description! I feel as if my head feels quite soft too if that makes sense. The Nioxin I use is system 2 for progressed thinning as I had so little hair left. The eyebrows and eyelashes coming out post chemo are another kick in the teeth I feel.
Glad your daughter is getting better now and that you got out for a change of scene. I too have been nervous about venturing out much. I have tried to increase my walking this week. Went out on my own on Monday for the first time in months as felt light headed due to taxol before so always went with someone to be on the safe side.
The Moving Forward course is run by Breast Cancer Now. I felt I needed it due to me feeling the whole experience is catching up with me a bit. In non covid times I think you would probably be in a hospital setting with speakers but due to covid the videos are posted each week online so it was an exercise one I looked at today. Meet the other participants on zoom next week.
Hope all goes well tomorrow and with your radiotherapy discussion. As everyone keeps telling me be kind to yourself and don’t feel bad about feeling bad. You are not moaning and it’s totally understandable that it’s all catching up now. Hearing myself saying this and realise I should be taking my own advice but not so good at listening to myself!
lovely to see all these new posts!
@CrazyCatLady I’m so happy to hear that your surgery went so well and it sounds like you have super mending powers to be doing so well just a few days out from the op.
@Gelbel sounds like rads has been difficult in lots of ways but I’m glad to hear your skin is holding up ok and by now you must be literally one treatment away from the end of it? So congrats for planting this next flag. Also exciting to be thinking about retirement.
The hair regrowth tips here are great - I now have “fuzzy duckling” regrowth on my head in the friar tuck bald spot left by the cold cap. It’s so weird touching it, feels like a baby’s head. I also have one eyebrow growing back thick and dark but not the other - very weird. Meanwhile, eyelashes are still falling out - what’s that all about?! I’m going to try the nioxin treatment you’ve mentioned @Kaz11 and @Rainbow70 … definitely worth a try.
I had a major wobble over the last few days re scan results. In a nutshell, they were good in that they showed a continued response to chemo, but I’d got myself totally fixated on getting a complete response and it doesn’t look like I will get that as there are still some abnormalities showing up, albeit much smaller than they were - the total “area” looks about 10% of what it originally was. Saw my onc on Monday and I think he was expecting me to be pleased and reassured, but due to my fretting and - sorry to say - Googling over the weekend I was not really in that frame of mind. Like you said @Kaz11 I have found that emotionally I’m really up and down at the moment - physically I feel pretty good now that I’m three weeks from my last EC, but I think it’s all catching up with me mentally. My op is two weeks away, I’m going in tomorrow to have the scout marker put in and then on Monday I’m meeting my radiotherapy consultant to find out what the plan is. Surgery still feels a long way off - tbh I’m eager to get on with it and feel a bit in limbo at the moment. I am anxious about what they’ll find and the pathology results but as everyone keeps saying - it will be what it will be and nothing I can do!
On the plus side, my daughter’s leg is healing up ok and she didn’t need surgery or a cast so that’s a BIG bit of good news as I was really worried for her. We managed to get out yesterday for a picnic and just being in a different location for a few hours made all the difference - haven’t really been anywhere except home and the hospital for the last five and a half months!
I hope this post doesn’t come over as whingey or gloomy - I’m ok, really, I think it’s just my head catching up with everything and maybe the obsession about scans and what that suggests they might find during surgery is a way of distracting myself from worrying about the actual op!
@Kaz11 I’m really interested in your Moving On course, I know a few others have done it too - I’m not at that stage yet, but is it helpful do you think?
Anyway, good luck @Gelbel for the end of rads and I hope everyone else is doing ok.
Love to all