Hello lovely ladies,
Have been thinking of you all a lot and wondering how everyone is.
@Gelbel I’m so so sorry to hear about your mum. Words always fail me in these sorts of situations - nothing anyone can say makes it any better. But I’m sending you a big virtual hug. Good news re your husband’s appointment and 👏👏 for getting that sorted, as well as being such an attentive ex! 😂 Hope you got the work issues sorted and CONGRATULATIONS on finishing!! What next?
Just got back from a big holiday. My older daughter was on a music trip with school in Spain so we travelled out to go to a couple of the concerts and then spent some time in Madrid, on the coast and in South of France. Felt completely surreal to be away after so long - what with covid, cancer etc we haven’t been out of the country for three years. It was amazing, and I keep catching myself and thinking “but this time last year..” and can’t quite get my head round it all. I just went through the anniversary of my surgery and life is so very different now. I feel mostly really well although every niggle/cough/ache/pain/twinge sends me spiralling. I’m seeing my oncologist next week, that six months has rolled round really quick. Not sure what he’ll do, maybe blood tests. Saw my lovely surgeon in June - I pulled forward my check up just because I felt it was such a long time between visits. I think I’m also meant to see the dermatologist to follow up after the melanoma but figured I better wait until my suntan has faded … !
Found the news about Olivia Newton John so upsetting and also Dame Debs, both such amazing strong inspiring ladies - very humbling. Apple news has definitely worked out I’m a hypochondriac and keeps promoting stories about people who thought they had a cold then found out they had terminal cancer - I really have to be careful on social media and so on.
Hair is completely out of control - still quite curly, just below my ears now. Mostly I love it and think I’ll keep it short now.
Been trying to keep fit - I did the couch to 5k but tbh still find running hard and can’t get beyond 30mins / 4K (yes very very slow). But gym is good and still loving yoga, I found a great class locally which is brilliant. Also been swimming a bit and whenever I get in the pool I think of you @Gelbel and @CrazyCatLady because you talked a lot about swimming last summer when it was hot. Also trying to be careful with diet / alcohol (though holiday made that hard!) - but I guess mostly I just want to do whatever I can to stay well. How are you all getting on with this kind of thing?
Anyway really just wanted to say hello and let you know @Gelbel that I was thinking of you. Hope everyone is well and happy and sending big hugs to you all.
Hello my beauties,
I was singing your praises again last week - work event (if Carlsberg did them!), colleague's m-i-l starting chemo any day now and is not speaking to anyone about her BC so I said the one thing I 100% recommend are these monthly threads. Because we know.
Anyway, how are you all? Been a bit traumatic here.
My poor mum couldn't fight a nasty UTI infection and passed away very quickly on 2 June. 😥 She's at peace now bless her.
Today I've been diagnosed with Lymphoedema though v mild and totally manageable. Have to wear a compression sleeve for the foreseeable to help, along with other self management stuff. Amazing how practically all day to day activities can affect the (non) draining of lymph. The body is mind boggingly awesome TBH.
I have to say that throughout my treatment the nurses, drs, physios etc have been brilliant. Today's Lymphoedema nurse was absolutely off the scale.
And my poor hubby, I had to make a complaint to get him an appointment - I was mightily proud of that email. We saw a lovely consultant yesterday. Only one who has ever had a real talk to him about his Crohn's. Seems he's been given wrong info all the time about his diet by the IDB team and dietitian. As his Crohn's is towards the end of his large bowel he should never had been told to have a low fibre diet. The fact that his food doesn't move can irritate his Crohn's ulcers. But his disease is controlled though it's likely made his bowel v lazy. And that's enough info! 💩😉
But you'd laugh... I went in with him saying "I'm Eric's wife" I was helping him tell her stuff and really laying some stuff on thick to reinforce not being acceptable 😉 When she poked and prodded him, she said asked how long I'd been Eric's ex-wife. Took us as while to work out she though she heard me say "I'm his ex-wife". She said that she thought I was very attentive for an ex! 🤣
My notice to retire was handed in on Friday. Due to accrued leave, my last day is 21 July... but OMG I'm having a nightmare that started yesterday pm. My boss isn't 3 months into joining the company... at 15:30 she totally messed up my leaving stuff on the HR system. My company thinks I've already left and no longer exist and I can access nothing, zilch, nada - genuinely can't do any work. Shouldn't care really but I hate letting my colleagues down. Ah well, they'll have to get used to it!
I hope you are enjoying the weather and are sleeping OK through it. Love a mono boob for helping the sweat flow. 🤣
Love and hugs to you all.
@Gelbel how lovely to hear your news! It is wonderful to hear how good you are feeling and how you feel the old you is back. You look fabulous in your photo and I particularly love the colour.
I have also been feeling like the old me is coming back. I have gone back to work two days a week and am going up to a maximum of three as I don’t want the same level of busy-ness and stress as pre-diagnosis. So far it is going really well and my colleagues are being very supportive - hope that lasts!
I am still having my targeted therapy (Trastuzumab and Pertuzumab) which leave me a little tired for a few days after each injection but totally doable. I started Tamoxifen in January which I tolerate fine and doesn’t give me any aches, thankfully. I am now post-menopausal as I had my ovaries out in January (for a different reason - a large cyst was there, thankfully not cancerous). I was warned about surgical menopause being very harsh and sudden but I didn’t feel any different. If the Tamoxifen gives me side effects I now have to option to change to the aromatase inhibitors but so far so good.
Wishing you all the very best, hoping all is going well for you. Siân xxxxx
Hello my lovelies
I was thinking of you all a lot over the weekend: had a few days away with 2 old school friends for our 60th birthday celebrations. We've not seen each other since 2019 and only emailed/texted during my diagnosis and treatment so they asked for the full ins and outs.
Anyway, cue Friday evening: authentic tapas restaurant over looking Plymouth Sound, tide in, a few sailing boats, warm sun, wonderful food, a fews moment of silence after 48 hours of non-stop natter, a time to reflect and I felt totally at peace and back to my old self. Then I got all teary as I was so happy and then I thought of you all.
I hope so much you that are back or nearly back to your old selves.
Well, in my case with those aches and pains @Rainbow70 and @Kaz11 mentioned. I suspect it's the Anastrozole but I'm loathed to ask for a change in case another tablet is worse. I have a routine call with an onc practitioner nurse this week, I'll discuss with her. I was sent an appointment - suspect it's ahead of my next Zometa infusion due in the last week of May.
It's not all good, Mum's dementia is worsening. Not helped as she's been in hospital for 3 weeks while they, and us, find a nursing home for her... she broke her hip but isn't figuring out at all how to walk with a zimmer. Hubby's Crohn's is playing up. But I'm the inner me I recognise after all the treatment and therapies.
There is good stuff. I can't wait to retire. Less than 2 months until I give my notice in and as I only need give a month's notice (thanks to keeping old Ts & Cs that are better than new onces), with leave, I'm all done on 20 July. 🥳
I love my hair. I've had a few silver highlights put in, it's a bit pixieish, I can spike it or flatten it or even put a little quiff in. Photo below was me last week on my way to a black tie do. Not bad given I had to get ready in the morning as the bash started at 6pm and it's the middle of event season at work, which means it's madness. Although I'm strictly going through the motions as I don't want to be there. Oh, and I went to a 4 day a week in March - I have every Monday off, which is getting me used to less dosh that retirement will bring. 🤣
Anyway, love and hugs to you all. I'd love to hear how you are.
Hello lovely ladies
hope you are all doing ok and I have updated myself on all your posts , I did type a post out a couple of weeks ago but it didn’t post 🤷♀️Took me ages to type as well . Working from home as have covid day 9 and still positive , glad had 4 jabs as felt rubbish with it but now just a head cold and test more faint now .
Aww @Kaz11 you will be exhausted working full time and the travel . Glad you had hair styled and I know what you mean when look in the mirror as I feel like that also . We have been through a lot, I sometimes think I feel worse now than I did having treatment. Unlesss you’ve been through it I don’t think anyone else really understands the impact , it’s good we have this forum . @Kaz11 my hairdresser put an organic colour 0n my hair so more light brown now , I’m there next week if you want me to ask which brand .. think it was L’Oréal . Good you are going to check out light headiness be good to get iron levels checked too . @Teagold @Kaz11 achy joints are awful especially when first get up or sat down for some time , is anyone taking any supplements . I often think now did that all really happen last year. We have all been through a lot and we are all doing so well. I try and take things a day at a time now and just try and have something planned to look to.
has anyone got any holidays planned ?
take care and lots of love
Hi @Teagold and all the lovely ladies on our page.
Sorry I have not responded sooner, it’s been a hectic spell.
It was great to hear all your news and I hope everyone is feeling stronger each day.
I have been full on at work and I have to admit it is taking its toll physically. Have had to actually go into the office most days in the past few weeks which adds almost 2 hours onto my day with the hours drive there and back. Is anyone else still suffering from fatigue? I seem to go through spells where I am fine and then feel absolutely burst. The SLM lady I speak to said this is normal as you do more when you feel better and then it catches up with you and your body says “enough”. Bit concerned though that I still don’t have the energy levels that I used to when I finished chemo and radio in June. In just over 2 months that will be a year since that stopped- I can’t believe it. Sometimes I think it has all been a bad dream and say to myself “did I really go through all that?” It’s not helped as we have said before by so many people thinking I am back to normal now whatever that is. My employer has been understanding-ish but as you say @Teagold I am like a 90 year old when I get out of a chair. Not sure if that’s the Letrozole or menopause or a combination of both. The sfx of joint pain have certainly not eased as time goes on but I suppose if it’s to reduce the oestrogen I’m not suddenly going to feel that my joints are better when they need oestrogen to lubricate them. However I know it’s better than the alternative. Also been having spells of lightheadedness particularly when out walking so going to try and get an appointment with the GP to check it out as it’s bothering me.
Had my hair cut for the first time a few weeks ago. My hairdresser said it’s strong and healthy which is good. She managed to blow dry it straight but whenever I wash it the chemo curls reappear. Am reluctant to colour it as it’s healthy but still don’t love the grey. I think I underestimated how long it would take for it to grow back but then it had to start from nothing. I still don’t feel it’s me when I look in the mirror and friends say to embrace the new me but I still quite liked the old version!
Anyway realise that I am sounding pretty moany when I should be thinking at least it’s not this time last year when I was going through treatment. I just wish my energy levels were a bit better but then I have been working long hours on and off so maybe I shouldn’t be so hard on myself.
I have still to get my implant port removed at some point and consider work on the left side to even it up with the new one on the right. Will maybe readdress this after the summer when hopefully I will feel fitter to facd surgery.
Hope everyone had a nice Easter weekend and had lots of chocolate treats.
love and hugs
Morning lovely ladies,
Can’t believe it’s March already. This time last year I think I was about five weeks into chemo and had just had my first really bad tangle with side effects. Sometimes I have to stop what I’m doing and think “yes that did actually happen” - not just cancer but covid - because in most ways life feels very normal. It was lovely catching up with all your news below and so happy that everyone is moving along the path albeit all the aches/pains/anxieties described are very familiar so I send you all a huge hug. I too am hobbling around like a 90 year old every time I get up from a chair! I seem to go through phases of worrying (“is that a headache?” “Am I breathless” etc) but I keep remembering what my lovely oncologist said to be on the lookout for anything persistent and worsening not every little twinge and to be honest being very busy at work is a good distraction albeit still very tiring.
@hopeful1974 I really hope you’re feeling better after your op. I too am headed towards ovary removal because of the genetic thing. I haven’t yet booked the appointment but have been referred to a gynae to start the process. I probably need to get on with it but wanted to wait until after Easter - hoping to get down to Cornwall (finally!!), really can’t wait to see the sea.
@CrazyCatLady it’s good to hear that your daughter now has an official diagnosis and I wonder how your return to work is going? I do hope you’re taking it easy.
@Gelbel sorry to hear about the cording, it’s so frustrating isn’t it when you’ve put all that effort into recovering fitness and strength only to be walloped by something new. I had that with my foot though thankfully it’s healed up ok, and I’m running again but still nowhere near pre-cancer fitness levels.
@Leftygurl fingers crossed your op date comes through soon if not already and so glad to hear this will get sorted out. What an ordeal you went through - on top of everything else!
@Kaz11 I’m with you on the hair! Mine went full on Barbara Cartland bouffant curls. Had a trim last week and it’s neater but almost identical style to my fifteen year old nephew 😂. Still, delighted to have hair of any kind. I was interested in what you said about hybrid working. I’m averaging two days in and the rest from home and it works ok. I’m not meant to be full time but I kind of am. I do like the days in town seeing colleagues though I definitely get less done. I guess it will keep changing anyhow.
Speaking of work, I better get going or I’ll be late. What glorious weather - it reminded me of one of you last year referring to a “strange yellow thing in the sky” which made me laugh. Sunshine does make all the difference.
Big hugs to you all and would love to hear how you are.
Good afternoon lovely ladies
It’s been great reading all your updates. Everyone seems to be progressing. It’s hard to believe it’s a year since we all started chemo - it’s the anniversary of my first treatment on Thursday. I have noticed all the start dates on the forum and I see there is a February 2022 one now. Glad it’s not me starting the journey.
@Gelbel am sorry to hear about the cording but glad you are getting help from the physio. I don’t have that thankfully but do find things a bit tight on my right side. If I do any sit-ups (need to as tummy has expanded with all the choccies I’m eating!) my right arm can’t go as far back as the left. I did the exercises post op but think it won’t go as far back as it used to now.
Interesting to read your comments about Anastrozole as I am the same with Letrozole. If they are all to suppress the oestrogen I don’t see how changing tablets will make much difference as I had thought about that too. Feel like my joints are getting worse and am like a 90 year old when I get out of a chair until I get going. Sometimes I can barely bend my fingers in the morning particularly my index finger so writing can be difficult at times. I have a check up with the oncologist on Thursday so will mention it to her but can’t see there being much they can do. Was googling all about oestrogen and it is responsible for so much in the body from your mood to metabolism and joint lubrication that it feels rubbish that ours has to be suppressed even more with these tablets as well as the menopause. Thr effects of that are rubbish too and being ER+ means we can’t take HRT. Get a bit frustrated with friends moaning about symptoms when they at least have options to do something about it!
Like you my hair feels like it is growing out the way. It is so curly. Could not be more opposite to the fine brown/blonde shoulder length hair I had. Going to let mine grow a bit yet in the hope the weight will pull the curls down. In 2 minds about colouring. Mine too is salt and pepper (more salt especially on the top). Don’t really like it as I feel old but on the other hand it’s healthy because it’s had no chemicals on it so wonder if I should leave it alone. I look at pre chemo pics and don’t recognise the person in them.
I am wfh at the moment but my workplace moving to hybrid working from next month. Think a combination of being in the office and wfh may be best for me. I do miss the interaction with colleagues. I have been feeling more tired over the past couple of weeks so mind races worrying something wrong. Again will ask the onco on Thursday. Also have more time now to dwell on things so thinking a lot about what I have been through. Am doing a mindfulness course which I hope will help and there is also a support group with the hospital which meets online every 2 weeks. My complementary therapist said a patient had felt improvement in joint pain by using magnesium spray and cbd oil. I have read about the cbd gummies and presumed these would not be an option. Again I’ll ask the onco. Am certainly feeling more anxious these days which I know could be menopause driven but never sure if it’s that, the Letrozole or a combination.
@Leftygurl so glad you will be getting plastic surgery soon for your portacath scar. What an awful time you had. As you say you can then look forward to the summer and wear non high necked clothes. Well done on doing all that exercise which is great. I am trying to walk most days.
@hopeful1974 hopefully you will bounce back soon from your ovary removal op. As you say probably for the best getting it done. Glad the citalopram is helping and fingers crossed it keeps the menopausal symptoms at bay. I need to get my implant port removed at some point but putting it off at the moment as need to consider symmetrical surgery on other side too. As it’s not urgent I am leaving it for a bit as want to be a bit fitter and stronger physically before having another op.
@CrazyCatLady am so pleased your daughter has a proper diagnosis now and will get the help she needs. Glad your herceptin jabs done and your hair sounds fab.
love and hugs
Hello my lovelies,
I'm so glad to hear you're all on the path to normality even with more ops and bits of treatment thrown in your ways. It's good news your daughter has been officially diagnosed @CrazyCatLady at least some support should be forthcoming.
I had my first annual mammogram back in mid-December and finally got the all clear letter this week. TBH if it hadn't of been 'normal' they'd been in touch PDQ.
I had a telephone physio consultation as my cording flares up when I've been driving. She thinks most is due to my chest muscles being tight. I must admit the loosening exercise she gave me seems to be working. She did offer me a face to face but she'd only done the same and she is calling me in a couple of months.
I'm so annoyed as just a few days before I was swimming a bit faster. I realised it's because the majority of the ache and stiffness in my operated side arm shoulder and side had gone. Well just about - simple things like reaching into the locker up to the shelf to get a tea bag I can do it without feeling uncomfortable. I blubbed 😊 #SimplePleasures My arms were the same size too - it had been slightly swollen. Then bang - cording and achy and not so much movement.
I think some of the aching (all over at times) is down to my Anastrozole. It's bearable but in the mornings all my joints can ache - even my fingers. Loathed to ask for a change as a different tablet could be worse.
I'm back proper full time at work and I'm busy. That makes for fun at times as if I get tired (make that when), chemo brain kicks in! Still only a few more months - handing my notice in mid-June and, with leave owing, should be finished/retired by the end of the month.
Current thinking is no to a recon - bought a 2nd Aqua Wave form dirt cheap in the January sales with a sign up for marketing discount thrown in. Much better shape than the softies, not as heavy as my 'high days and holidays' NHS provided prosthetic (which is lovely) and it sits and looks nice in my mastectomy bras and better quality comfort bras.
My hair! Oh my - it's doing my old teenage self and growing up and out! Think The Jackson 5 🤣 Not helped that I've not been able to get an appointment for 7 weeks which is way too long for me. I'm happy with what it looks like on the days I wash it as I can make it nice and spikey, though I do wonder how much better it will be with a damn good thinning... roll on Thursday. Everyone comments on the colour, saying that it's lovely. It's very salt and pepper - probably more of the former. I'm thinking of having silver highlights put in the top and around my face.
It is lovely to hear from you. Please continue to drop in occasionally.
With love and hugs 🤗
we must all have a special connection as I too was thinking about you all a couple of days ago! Strange isn’t it, that none of us have met but I really need and want to hear how you are all getting on. I know you all understand and nothing else needs to be said.
To be honest nothing much has happened in my life in regards to treatment since I last wrote. I got confirmation that I’m on the waiting list for plastic surgery for my portacath scar, and hopefully that will be going ahead by at least March as I want it to be a long way down the healing time before Summer so eventually I can then think about wearing clothes that aren’t high necked all the time, I’m so looking forward to that! 😊
Apart from that I’m taking my Letrozol, calcium, bit D3 and C every day and feeling tbh really good. I completed the Couch to 5K and have been running at least once a week, lots of walking and mountain biking, yep feeling good!
Still working at home full time but I’m able to go to the office whenever I want to also from now on, life is pretty good! 🎉🎉
love to all of you
Good morning beautiful ladies 🙂
Bit late to the party, but hope you have all had a good start to 2022, so Happy New year!
Well things have been happening for me! Firstly my daughter has now been official diagnosed with ADHD so now awaiting the next steps on the titration route and GP consult next week. I had the last of my herceptin jabs on 14 December as oncologist called me on 16 December to advise my heart function had dropped down to 50% and they said I'd had enough now (had 12/18 and apparently this is as good as the full year anyway!). This means I was signed off from oncology by way of a 5 min phone call - and it just happened to be 1 year to the day since my diagnosis. Felt really odd for a few days and the obvious 'has it been enough really?' moments. I'm hoping this means my fatigue may now finally start turning the corner, as well as the residual peripheral neuropathy (rule of thumb seems to be around 3 months after last jab before the sfx diminish), so fingers crossed!
I've also had my radiotherapy assessment and all good with this too, so again another department I'm signed off from (although I was told I have a bit of oedema in both breasts so bit more massaging to do).
I'm booked in for an assessment with a physio next week as was crippled with pain in my right arm last week (rolled over in my sleep and shot awake with the pain). Have a feeling it could be a rheumatoid arthritis flare as I do already have my autoimmune issues. Takes me a good 30-40 mins each morning to uncrunch everything and hobbling around like a 90 year old (not helped by the fact that currently I am starting to look like my 80 yr old mum when I look in the mirror!). So took drastic steps yesterday and have gone fully white blonde so I don't look like an old granny lol (not that my mum looks her age though)!!
The Maggie's 'Where Now?' sessions have been going well and another 3 to go, including tomorrow. I find it gives me that little impetus to actually go out and start mixing with people again. The ladies on the sessions are lovely and think I've found a few more friends along the way.
Finally, had my PIP phone assessment a few weeks again but think I stuffed it up as I couldn't get my words out to explain how I was, but my boss is happy to help me with the MR if it is rejected (which is quite normal on the first phase anyway). My ESA has also gone in now so waiting for that to start as I've taken the decision to sign myself off work until the middle of March - and then I'm hoping to go back on 2 x 2hr shifts and use up some of my accrued holiday leave, and build it up to a max of 3 x 4hr shifts.
So things are moving along and my treatment is all DONE!! Happy but anxious at the same time....but time to start getting on with getting on now I think.
Hope you are all now getting your mojo back and starting to take those gentle steps back to a new life after BC xx
Take care all and sending much love your way xx
Sam 😍💖 xx
Dear @Teagold , so lovely to hear your news. It's good to hear that getting back to work does get easier with time! I am starting back just one day a week from 9th Feb and hope to continue like that for a few months, working my way up gradually. I hope your foot heals up soon. I can imagine how frustrating it is, as I was really progressing with my strength and fitness until my op to remove my ovaries last week. I am now back to lying on the sofa and doing a short, very slow walk, which is very frustrating! I'm so glad the op went ahead, though, and that is the last big thing now for me (I hope!). I had them removed as I had a large cyst on one of my ovaries and was offered complete ovarian removal to put me into surgical menopause. This means I will have a wider choice of hormone therapy drugs going forward (I have to be on those for the next 10 years). It also eliminates the risk of ovarian cancer obviously and my oncologist thought I should go ahead with it as it will also ensure the oestrogen is minimised in my body (I was triple positive). So, it feels like a proactive move. I was warned that the surgical menopause would 'hit me like a truck' but so far it has been no worse than before the op. Chemo turned me menopausal anyway, so I think I went through the menopause in March. I have a couple of night flushes, but they are not too bad and I certainly don't need to change sheets or anything. Perhaps the Citalopram is helping me - it is often prescribed for women who are not able to take HRT to help with the hot flushes. Anyway, I just thought I'd share all of that in case it helps anyone! I hope you are all well and look forward to catching up on your news.
Wishing you all a far better 2022 than 2021!
Love Sian xxx
Been thinking about you all - how are you? Hope everyone had a good Christmas - I was pleased to see 2022 arrive and fingers crossed it brings better times for us all. I’m back at work 3/4 days a week now mostly still from home but will be going into the office more as time goes on. The first couple of weeks were completely exhausting - I literally felt like I’d been hit over the head! But it’s getting better and so nice to be doing something as “normal” as being at work. I had another chunk of skin removed from my foot last week so I’m hobbling around in a bandage - weirdly this has been way more painful than my double mastectomy! It’s frustrating not to be able to get out for a run or a walk but hopefully it will heal up ok.
Anyway I just wanted to say hello and see how everyone is. I hope you’re all ok and that the year has got off to a good start for all.
Good afternoon lovely ladies
Just wanted to wish you all a very Happy and hopefully Merry (I know I will be partaking of a glass or 12 of fizz!!!) Christmas when it comes and hopefully Covid free too.
It has meant the world to me to have the support of all you lovely ladies on this forum during what has been one of the most if not the most difficult periods in my life. What a year we have all had. We have climbed the highest of mountains and planted those flags on the summit and we are here to tell the tale. It’s been some journey for us all. As @hopeful1974 said if only we all lived nearer and we could have raised a glass to each other in person. All I can do is send virtual hugs to you all and thank you for all your advice, support, love and words of encouragement.
I had the final inflation of the right puppy a few weeks ago. It has been a bit tender but I suppose it has been stretched so not surprising really. I wished it a Happy Birthday last Friday as it was exactly a year from my surgery. At least this year I can spend Christmas Day with family as spent the day on my own last year. The docs said it was too risky only one week post surgery in case I picked up an infection. Next appointment is for bone strengthening infusion mid January but putting that out of my mind for now.
@Teagold glad you had the mole removed and fingers crossed nothing further required on that front.
Have a lovely time everyone whatever you do and here’s hoping 2022 is better for all of us.
love Kaz11 x
Hello lovely ladies.
Well here we are, Xmas eve, I almost can’t believe it.
And just to top off this dramatic year I got the results back yesterday from my mole removal and it was “melanoma in situ”, I almost fell off my chair and then the lovely doctor explained that it was “pre cancerous” (the name is a bit misleading then I guess!) and non invasive. I have to go back and have a wider margin of skin removed in the new year but she said that hopefully should be it in terms of treatment. Can’t really process it. But thank god I got it removed. Still no results from my dexa scan or blood tests so I’m putting my anxiety about those in a box over Christmas and I’ll contact Dr Oncology in the new year. Perhaps he would have called if anything especially bad showed up.
In other news, been building up work and quite a nice time to do it in the run up to Xmas as everyone else was winding down! I’m actually quite looking forward to working more in the new year. I hope I can keep some balance though, want to have time for walking/running and time to breathe.
@Gelbel you did make me laugh with the Barack Obama reference. My hair is getting quite bushy and stands up on end in a way that reminds me of Freddie Mercury! But a couple of kind colleagues said it was more Olivia Coleman (on a good day). Either way, it’s just nice to have hair again so I’m not complaining.
Anyway ladies, really I just wanted to say an enormous thank you to you all for your lovely friendship and support this year. I honestly don’t know where I’d be without you and the support from this forum. I wish you all a merry, peaceful, stress-free, anxiety-free, cozy and calm Christmas filled only with people who make you feel fabulous and lots of lovely grub (and maybe a few glasses of something chilled and sparkling). Big hugs to you all.
What a journey we have all been on this year!!
looking back to this time last year it’s amazing what we have all been through, and I can honestly say I’m not the same person that I was at all. Whether that’s for the better or for worse I’m not sure tbh but my experiences have changed my perception of everything!
Merry Christmas ladies!! and here’s to an even more positive 2022, I hope you all have lots of fun, laughter and enjoy the festivities….I know I will!! 😊🎉🎅🏻🎄❄️
Dear all, I’m sorry I haven’t been on for a while but wanted to wish you all a wonderful Christmas. You are all amazing and I take such comfort from your posts. Like @Teagold said, I wish we all lived closer so we could go out for a drink. I wish you all the very best for a much happier 2022! Love, Siân xxx
many thanks for all your kind thoughts you posted on the loss of my dear dad ❤️
sorry I have not posted for a while.. but you have all been in my thoughts .. hope you are all doing ok ❤️I will catch up with all the posts in the new year.
Just wanted to wish you all a very merry Christmas. 🎄🥂🎅🏼. @Gelbel Thank you, I will raise a glass to us all too .. your right we are all blooming awesome… what a year !!.
sending love 🌈xx
Hello lovely ladies
Dropping in to wish you all the Christmases that you wish yourselves. I shall raise a little glass of something to you all safe in the knowledge that we are blooming awesome.
Love and hugs to you all 🤗
Very quick one Sam (@CrazyCatLady) - gel will make your hair curl as its water-based. My hairdresser said to avoid all such products for the time being. If I give in and use the wax I prefer to style mine with, whoop, within hours I'm rocking my best Barack Obama look.
@Kaz11 talking to your girls 🤣🤣🤣🤣🤣
Thanks for all your reassurances about celebs 'thought shalt do as I do' articles are enough to damage the blood pressure.
Not sure I've avoided Zometa pain as I'm a bit achy this week. But in the last 3 weeks I've driven to the far bit (for me) of The Wirrel, twice to Bristol (Mum's 'trying out a home, hates it but too far gone with Dementia now to be safe alone) and to Cambridge. And obviously home after each one!
Being referred to the physio by the BCN as my cording's back quite badly - I bet it's the driving!
Love to you all 🤗
Reading your posts today is just what I need!! I’m feeling a bit down in the dumps - older daughter has got covid and been quite poorly with it, and the timing is so rotten as she was due to be in a school play this week which she’s been working so hard on and was really excited about, also (very selfishly) I couldn’t wait to see her perform because I thought it would be a lovely thing at the end of a pretty grotty year. And I TOTALLY agree with what you said @Gelbel about celebs, in fact I think it can be quite dangerous for any one person to promote a “this is what ladies with breast cancer do and don’t want” view because if we’ve learned anything it’s that we are all different and react differently to each step of this journey so it’s not helpful to have anyone making assumptions. Ggggrrrr. And @Kaz11 I’m afraid I’ve been feeling a bit the same lately about those who seem to be sailing through life without a bump - I know I shouldn’t, and I know that things aren’t always what they seem and everyone has cr*p to deal with but I’m having to really steer clear of certain people and social media etc so I don’t get too triggered otherwise I’ll turn into a nasty person with no friends!! So I don’t think you need to shake yourself out of a slump, or at least - if you do then so do I!!
So once again, this forum is a lifeline - reassuring me that I’m not alone and I’m not going mad. Wish we lived closer so we could all go out for a coffee or glass of wine together and put the world to rights!!
In other news, I had my appointment with Dr Oncology. He didn’t try to ditch me but threatened to dump me after next appointment in three months. Also I’ve got to have a bone scan (dexa scan?? Has anyone had one?) and full blood tests - I think this is all about menopause as I asked him about bisphosphonates. And he has also referred me to get the dodgy mole removed. He didn’t seem too alarmed but just said better to get it removed rather than worry about it, and thankfully means I didn’t have to negotiate a GP appointment. So I’m a bit anxious about the scan and getting all these results back etc. But anxiety seems somewhat normal now and I’m not dwelling on it too much.
@CrazyCatLady I really love the washing line analogy! That really works for me. Good luck with heart MRI and good to hear that the tamoxifen so far isn’t too problematic. I hope your dad is better and that your daughter is doing ok - is Alicia your daughters name? It’s a beautiful name.
@Gelbel glad to hear you’ve had the infusion with hopefully no side effects, that’s great. Interesting about the moving on course, again just shows how different everyone’s experience is. Heart attack during rads!! Crikey, I think I got off pretty lightly with rads - didn’t get sore skin and certainly nothing as dramatic as that!
Whilst I’m not glad to hear that everyone is still feeling tired, I am reassured that we’re all in the same boat. I mentioned it to Dr Onc, he said six months after treatment ends is probably when you start to turn a corner. I struck up a chat with another of his patients in the waiting room, on a similar sort of timeline to me though looks as though she may not have had chemo as has lovely bobbed hair (not a wig) and we were both agreeing how knackered we felt. I’ve started seeing an acupuncturist, hoping it will help with all the joint aches and so on.
I’m doing a bit more work wise now - probably averaging 3-4 hours each day most days. It’s been good actually, just getting back up to speed slowly with my team, nothing too stressful yet. Haven’t quite worked out how to manage things in Jan. Covid situation makes me anxious about being in office loads and anyway I haven’t the energy to go in full five days a week yet.
Anyway I hope everyone’s various appointments and milestones/anniversaries go as smoothly as possible. @Kaz11 it sounds v sensible to put off any decisions about further surgery for a few months - I’m sure things will feel very different for us all come the spring once all the anniversaries are in the rear view mirror and the weather is getting better etc. For now, I mainly just want to hunker down with a cuppa and a chocolate digestive (or 3). Same thing on the waistline, but December isn’t a good time to worry too much about it. We all deserve a merry Christmas and will resolve to keep all the new healthy habits going in Jan.
Good evening lovely ladies
Just been catching up on all your news, it’s great to hear how everyone is getting on.
@CrazyCatLady I hope your dear Dad is a bit better now. What a battering your family is having. So unfair. Hate to admit it but feel I am getting bitter about people who seem to sail through life and yet some of us get more than our fair share landed on us 😡.
Well done re getting the cross trainer, am sure it will make a big difference. I am still going for walks but not so easy on days like today when it has poured from the heavens all day and also dark. Maybe need to get into my Joe Wicks again. Was so fit pre all this and now notice that waistbands are tighter - the menopause middle aged spread clearly is a real thing as I don’t seem to have a waist anymore (percy pig and cadburys may have a lot to do with this though!). Need to up the abs exercises methinks.
I hope your heart MRI and oncology reviews go ok and that’s great news being halfway through the herceptin jsbs.
Like you I am not sure if I am pacing myself too well. Sometimes I am still shattered and I am 11 months post surgery and almost 6 post chemo and rads. I tend to think that I should be “normal” by now and beat myself up for getting low. People say be kind to yourself but not sure how if that makes sense (don’t mean to sound needy when I say that). I know we’ve all been through so much and I was so disciplined and did everything I was told during treatment but now I’m not so good with my fluid intake etc and eating too much rubbish. Anniversaries of diagnosis, meeting the breast surgeon, meeting the plastic surgeon, notification of op are all occupying my mind at the moment which isn’t a good thing. Need to give myself a shake and get out of this slight slump I feel I’m in. Usually love Christmas but can’t believe it’s nearly here and so not ready.
Feel reassured like you with the follow ups. I feel I am going to a safe place when I am at the hospital and they are now starting monthly follow up catch ups with the chemo nurses via zoom with patients following feedback I gave them on a call recently.
It is interesting what you say about CBT. I have always been told by my counsellor that distraction is a good technique when I am feeling anxious so keeping busy helps me but as you say we are not always able to do that now. Maybe I need to try some other coping strategies.
Thanks for mentioning about the eyelash and eyebrow regrowth cycles as I was starting to worry that my eyelashes were looking shorter again so it’s good to know several growth cycles are involved- this is why I find this forum so great. May invest in Revitalash.
My hair I feel has now gone bonkers! When it is just washed it’s straighter but as soon as I put the follicle booster gel on it goes really curly. My hairdresser is on mat leave so i think I’ll wait til she comes back before I do anything else with it. So much for the sleek Linda Evangelista crop I was hoping for by Christmas! Hey ho at least that thought got me through some difficult times when I was losing my hair.
@Gelbel glad you were in and out quickly with your Zometa infusion. I am due my second one in January. Will be in a bit longer as they need to check my bloods first. Can’t believe it’s almost 6 months since my first one.
As for the “celebs” - rant away. Can’t be bothered with these patronising folk who act like they are the first to go through it. Try being us and having to get treatment in the height of covid. As if BC wasn’t bad enough we had that on top. Nothing like a good rant I say.
Am glad you found the Moving On course helpful and you have made a new friend. So good of you to mention us too. I found the course helpful but there was only one lady on mine in Scotland but no one kept in touch which disappointed me. I was hoping to meet some kindred spirits but it didn’t happen unfortunately. I have gained more from this forum.
Good luck for your mammogram on 16th and laughed out loud at your comments on the initials!
@Leftygurl good luck to you too with your mammogram on 6th and hope you enjoy the Moving Forward course.
@Teagold so pleased your biopsy was clear, what a relief. How did you get on with the onco? Hope your compression sleeve helping too.
Funny you saying about the radiologist “breaking up with you”. I think we put so much faith in these people as our lives have literally been in their hands at times that it feels strange not seeing them so regularly now. On a call with the chemo nurses another patient mentioned seeing the same breast surgeon as I have. Felt kind of weird (probably sounds silly) as I am sure I am the favourite patient! 🙈.
I saw the plastic surgeon last week - exactly one year since I had first met him. We both agreed that I have been through enough this year so no immediate rush to remove the port from the implant and if I want symmetrical surgery it can be done anytime in the future. I got another inflation which he said would help with the capsule lump I found recently. Back again tomorrow for another inflation. I thought this might even the sisters up (or the puppies/puppers) as I now call them but the right puppy is now fuller so looks even more perky while left puppy just looks saggier and a bit sad. Think I may have the surgery but maybe think about it in 6 months time. Find myself talking to them now - think I’ve lost the plot!
@Teagold you asked about my work. It has been full on and I was tired and a bit off after my flu and covid jabs. I worked at an evening event on Friday which was tiring. Was so glad to get home and have a bath (that was the night of the storm) so was anxious on the drive home. Work now very quiet again so I don’t have as much to do and more time to think. Am still way off firing on all cylinders at work. Not sure how well that will go down with them as I thought I would be fit again by the end of the year but it would appear not. Need to remember though that I am now classed as disabled as far as they are concerned and they need to treat me accordingly.
Anyway dinner is ready. Love to all you fantastic ladies as always @Rainbow70 and @hopeful hope you are ok too.
Good morning my lovelies xx
@Teagold oh I am so pleased to hear that it was nothing sinister and that you can now breathe easier again. And good news too about your rads follow up (even if he did try to break up with you lol 😂). I find it quite reassuring about all the follow ups we are getting - it is, like we've all said before, like a little security blanket and just helps put our minds at ease.
I've now got my next heart MRI in for next Wednesday, followed by bloods on Saturday in preparation for my oncology review on 14th December. Need to make sure my heart is still pumping well so I can have my 6th herceptin jab (also on 14th December). This one will be the halfway point for the jabs...yay!! The last one left me limping as my leg was soooo sore afterwards, which is the first time I've had that happen. Guess it was just where the nurse jabbed me as it was slightly higher up on my thigh?
Hope the lymphodema sleeve and massage helps and good luck at keeping it at bay for a good long time.
I'm also exactly the same as you regarding the tiredness (5 months post-chemo, 4 months post-surgery and 1 month post-rads). However my nurse said that the herceptin also causes cumulative tiredness effects so looks like this will be ongoing for a few more months yet 😞 I find I can potter around for most of the day and still have a 1 hour nap, but if I do a more strenuous task (ie cleaning the fridge/freezer lol), then it not only takes me twice as long, but I then need much more rest time to recover. Still definitely not got the hang of pacing myself!
After discussion with my therapist, I said I was going to set myself 30 minute 'tasks' and then rest for 30 mins to see if I could then resume doing another 30 mins of whatever it is I was doing. That said, this week I've done pretty much nothing as my left arm has been agony - called BCN as thought it may be something to do with the tamoxifen, but seems like I 'may' have perhaps overdone it on the cross-trainer. My forearm felt really tender and bruised but nothing actually visible - so think it may have been from gripping the handles on the XT lol! However it's a lot better today so will have a couple of 10 min stints on it - particularly as I haven't managed my swim this week as it just too blooming cold! But may go tomorrow or Thursday (yeah I know....not supposed to do too much too soon lol) xx
I ventured out with my mum and our family friend last week - they came to pick me up so we could go shopping for some bits for the grandkids. In my 'normal' days, I could literally shop till I dropped, but after just 30 mins of wandering around the shop, I had to have a little sit down for a few mins before resuming the shopping. We then went to have coffee and cake which was lovely. All in all, I was out for less than 2 hours but promptly had a 2 hour nap when I got home....really not liking how doing something which I used to enjoy is now so tiring 😞
Regarding the tamoxifen, I've now completed my first month on them and, so far, so good. Still have the achy joints particularly in the morning or if I've sat still for too long, but if I'm moving around then it does seem to help them ease up a bit. However this cold weather has definitely not helped as my knees and ankles have been singing to me for the last couple of days (and can't use iboprofen or voltarol gel as I'm allergic..pfft!)
My CBT is going quite well and had a little epiphany last week....I realised that my normal coping mechanism was to throw myself into a full house clean (apparently not a good way of dealing with stress or worry though!) and now, as I can't do this, it has exacerbated my anxieties. It really was a lightbulb moment and I am learning to try to be kinder to myself and also starting to delegate things a little more. Small steps, but definitely well worth it - so definitely recommend this for anyone who's gone through all we have done in the last year. I have learnt so much in the last few weeks about managing my worries and I have now developed my own coping method. The way I described it was that my head was like a washing machine with all my worries and anxieties spinning around in there. So what I try to do now is pluck out one of the 'worries' and if it is something I can deal with straight away I will visualise folding it and putting it away. For the worries which still need work, I put them out on my virtual washing line so they can flutter away until they are ready to be folded and put away. So at the moment I currently have tea towels on the line for 'work', 'Alicia' and 'Scans'....nothing I can do about them yet, so they are out of the washing machine and my head is slightly less cluttered. Not sure if this makes sense the way I've described it, but it does seem to be working xx
@Gelbel oh I so hear you about the 'celebs' and their cancer journeys - I try not to actually read any of them, apart from (as you say) Julia who seems like she could be one of us.
Glad you Zometa infusion went well and at least you know it'll be the elbow for the next one lol 🙂 Hope you are feeling a bit better today and staying inside and warm for a bit! Good to hear you've started your Moving On course and hope it proves helpful for you and nice to hear there was at least one lady there who you've connected with.
It's really odd that our anniversaries are all coming up...so good luck for your appointment on 16th (which is actually my anniversary date!) Plus I love the way you described your mammogram letter abbreviations haha xx I've realised this week that it has been a whole month without one hospital visit!! But all starting up again next month for the next 3 months.
@Leftygurlhope you enjoy your Moving On course too and good luck to you too for your mammogram on 6th....hope you don't have to wait too long for the results. Some ladies I know are told on the day, but some have to wait 3 weeks or more, and we all know what waiting for results feels like xx
Oh, nearly forgot - actually went to the hairdressers last week!! Just a little tidy up and shaping around the back, and it just felt so good to just be sat in the chair having a taste of the old normality xx
Sam xx 💖
Hi @Gelbel & all,
I signed up to the Moving on course too, but you must be in the next group as my virtual meet up was a few weeks ago and I missed it because I was working, a bit miffed about it as it sounds like you got a lot out of it really but I’ll get over it.
I have my mammogram on the 6th so yes nervous!!
Love to all 🥰 xxxxx
Blimey @CrazyCatLady you've had one hell of a year haven't you? Glad to hear your dad's on the mend.
Well, I had my Zometa infusion on Friday. In and out in 50 minutes - would have been shorter but they took ages to come and take my cannula out. The girl who put it in gave me a right funny look because I was expecting it to go in one of the veins down by my fingers - a la chemo. She was like "no, your elbow."
I'd forgotten about the bleeping machines and a nice cup of tea and a small packet of biscuits. ☺
Pretty sure I have avoided any side effects though I've a little bit start of a cold feeling today but then I was out in that atrocious weather at the rugby yesterday for hours.
Still getting pretty horrible heartburn - worse with carbs.
I had my virtual Moving On course on Wednesday. If we are playing top trumps I had the worst diagnosis and most treatment. I was the only one to have chemo. Although none of them seemed to have a straightforward experience. One poor lady's reconstruction (from her tummy) at the same time as mastectomy had to be totally removed as it started to decay. Another had a heart attack part way through radiotherapy.😲
They asked how I got through chemo. If your ears were burning it's because I was so singing our little February 2022 starters thread's praises and how it/you were/are lifesavers.
We asked to exchange details. I'm pretty sure most of us will keep in touch, even meet up and one lady might become a long-term friend. Her and I stayed on the call when it ended and nattered for a good 30 minutes.
@Teagold I'm so pleased to hear your lump was absolutely nothing to worry about and your surgeon will see you again.
First anniversary of diagnosis for me on Thursday and I've an appointment for a mammogram on 16 December @07:40. I had to laugh at the letter, it has XL mammogram LT as a title. I see that as being an Extra Long Mammogram, (on the) Left Tit. 🤣
I hope your all well and busy making plans to have some celebrations over Christmas.
Love and hugs 🤗
@Rainbow70 I’m so so sorry to hear about your step dad. Sounds like it must have been a huge shock. And after the year you’ve had too. Big big hugs to you. Xxx
Thanks ladies for all the kind words re my tests and so on. Good news - the biopsy was clear. It was fat necrosis and some mild inflammation so the advice I’ve been given is just to let it be and it should clear up. I saw my radiotherapy consultant this week and he was happy with my progress so far, in fact he said he didn’t need to see me again but I accused him of trying to break up with me 😂 so he relented and said he’d check me again in three months. It’s just that he does a proper clinical examination - feels all my glands etc - and I find it really reassuring. Next stop is my oncologist on Monday. I’m anxious about this one as not sure what happens next in terms of tests/scans and of course I’m going to mention this mole and am sure that it will trigger a whole new wave of appointments/tests/investigations. I’m absolutely braced for it. Anyway, I guess I’ve dealt with everything else that’s been thrown my way this year, like we all have, so only way forward is one day at a time! Oh and I had to be referred to the physio for a lymphedema assessment - I’m getting a compression sleeve and have to do manual drainage. It’s not too bad just a bit of an achey arm from time to time but wanted to get it checked out and hopefully nip it in the bud/stop it from getting any worse.
@Leftygurl I’ve been thinking the same about hair growth! Mine seemed to grow really fast (and bushy!) to begin with but now seems to have stalled. And same re eyebrows/eyelashes - I’d noticed that they seemed thinner again. Useful to know re cycles. I keep hearing amazing things about Revitalash and haven’t tried it yet so perhaps should give it a go. Good luck with your plastic surgeon appointment and keep your eyes on that holiday - it sounds amazing, such a well deserved treat to look forward to.
@CrazyCatLady sorry to hear about your dad, hope he’s well and truly on the mend from covid and that his treatment is going smoothly. It sounds like you’re finding the CBT helpful? I’ve also been a massive worrier all my life and finding it hard to figure out how to move forward without constantly stressing about recurrence. I’m seeing my counsellor in a couple of weeks. I can feel myself building up for a massive download when I see her!! But I think it’s what I need - going through treatment I think I kind of bottled everything up and didn’t give myself too much time to think. I’ve been doing more work over the last couple of weeks, easing back in with some team meetings and 1:1s etc and it’s good, distracting, though I get really really tired. Is that still normal? I keep thinking I’m nearly five months post chemo, three and a half since surgery and two months since rads finished, I should be feeling more like my old self but I’m still shattered!!! I just finished week 5 of the couch to 5k today, then went for a walk with a friend and now I’m shuffling round like an old lady with a stiff hip and a sore foot - what a mess 😂! Anyway, 👏 on keeping going with the swimming - so much harder at this time of year, and I’m sorry to hear about your hubby’s hypertension but the cross trainer sounds like a great idea. I’d definitely get one if we had room for it.
@Kaz11 your appointment sounds like it was reassuring and great news re clear mammogram. Well done for getting through that and your anniversary. Good luck for your next appointment too. Unbelievable that you’re getting gripes from people at work - it’s quite staggering how some people react to this whole situation isn’t it? Are you finding work a bit easier energy-wise now or still tough? I reckon I’m doing about 50% of a normal week at the moment but it’s exhausting, and I’m slower than I was. Almost like having to learn how to do normal things all over again. Anyway, big hugs to you and hope you’re doing ok.
@Gelbel great news about your follow up letter and how great that your consultant is sensitive to the impact the meds were having on your lifestyle. I hope you’re feeling a lot better now off the tablets.
So glad it’s the weekend and can put my feet up this evening. I hope you all have as restful or as energetic a weekend as you need/want - I’ll be mainly on the sofa, but perhaps a bit of mincemeat making as it’s “stir up” Sunday. Not quite feeling festive but maybe once I get through my next doc appointment 🤞.
big hugs to you all
Sorry I've been AWOL again....life is starting to catch up with me! Been reading through all your news over the last few weeks and hope you are all doing as well as can be (and apologies in advance if I miss anything or anyone)!
I've been pretty good following my radiotherapy and no issues with skin or burns (think the copious amounts of Aveeno being applied must have worked well). Have just started to get the odd twinge around my ribs which I guess could be some rads damage, but nothing too intense so it is managable.
I also took the plunge and started my tamoxifen on 1st November - so far, so good, but have started to notice achy fingers, knees, ankles, etc, for last week or so. But have had several good night's sleeps in last couple of weeks, so hopefully this will be the effects of the sertraline I'm also now on.
Due my 3rd CBT session later this morning and it's so strange going over everything and all my worries and anxieties. I've always (always!) been a worrier so it's hard to pin point all the ones which are in the forefront - but mainly it's more to do with not having control of things like my daughter and others in my life who I worry about. I've learned so far that my way of coping is not the best, ie. throwing myself into an activity or project to distract me - just means the worry is still there but now I also now end up being exhausted by the physical effort.
Seem to be coping ok on the sertraline too, but had a few dizzy moments earlier on but these seem to have passed. When I'm asked about my current mood, my stock response seems to be 'OK', so neither happy or sad, just kinda flat. I'm finding I'm struggling more and more to actually motivate myself to do anything - but yesterday, despite it being cold, dark and generally pretty miserable, I got off my butt and went back to my swimming. It was so good to be back in the pool and I did feel quite accomplished afterwards, but took it really gently.
Also ordered a new cross-trainer for the household to use so looking forward to getting some other exercise into my daily routine, which hopefully well get the endorphines going and give me some 'oomph' back.
I've now had my 3rd covid jab (AZ) and unfortunately the day afterwards I had a sickness session....had a panic that it was due to the tamoxifen which I'd taken an hour earlier, but no issues since then, so phew! Thought I may have to deal with this as a side effect for the next 5-10 years! But definitely now think it was the jab.
My dad was hospitalised with covid a couple of weeks ago, but now back home and doing OK and still on his chemo/blood transfusion regime for his AML. Also my husband was diagnosed with hypertension so he's now started on a lifetime of blood pressure tablets, which he's not happy about, but his family all suffer with high blood pressure so it wasn't totally unexpected. So we are both now going to try to get ourselves a little fitter (hence the cross-trainer) and he's been told he's got to loose 2st by his next check up in April - so we can both push each other along with our weight loss efforts.
@Leftygurl with you regarding the hair growth progress (or lack thereof). Mine too seems to have stalled but this could be due to the herceptin perhaps? I've got a good 2cm covering all over, with the odd bits being a bit longer, so does really need a bit of a tidy up before Xmas. As for eyebrows/lashes, these grow and fall out in cycles so they say it takes around 3 growth cycles for them to settle back to where they normally are. Think mine are now in their 2nd cycle so could thin out again in a few weeks (think it's something like a 5-7 week cycle and similar for eyelashes too). So don't worry if they are thinning again, they'll come back soon xx
Good luck with your appointment in December and hopefully it won't be too long a wait to get it all sorted out and you can then look forward to that well-deserved holiday in the sunshine!! We're hoping to do a 17 day holiday next June to our favourite spot in Cyprus (along with my mum and our family friend).
@Teagold well done getting through your appointment and fingers well and truly crossed that it is just scar tissue or fat necrosis xx And hope you can get some reassurance about the mole on your foot too xx
@Kaz11 well done to you too on getting through your appointment and clear results (yay!), and yes my surgeon also said 'sisters' not 'twins' but I see mine as nearly identical twins lol 🙂 Good luck too for your surgeon's appointment and hope you get some answers about options for surgery on your left side.
@Gelbel so good that you've also had a clear follow up - I've got to wait till next July for my first mammogram but already got the appointment booked in. Got a few follow up appointments coming up in December, January and February which are mainly phone consults, but actually seeing my surgeon on my 6 month anniversary of the op - think he'll be quite pleased with how they've turned out (as I am!)
My mind is now starting to turn to my diagnosis anniversary next month and all that followed, so know this will be playing on my mind for a while yet. But as you say @Gelbel we have all got through this first year - not necessarily unscathed physically or emotionally, but still here standing and fighting like the Amazonians we are!
Love to you all and sending hugs to those who need them 🤗 💖 xx
I'm so sorry to hear about the loss of your step dad @Rainbow70 and sending all my love and condolences to you and your family xx
Love Sam xx
Interested to hear that you received a follow up letter from the anniversary of your diagnosis @Gelbel as all I’ve had is telephone appointments and no letters about check ups or a mammogram or anything! I suppose I’m just being impatient.
So sorry to hear about your bereavement @Rainbow70 , sending lots of hugs to you x
Hair- my hair is a mystery to me! It really feels like my hair grew quite quickly since about the end of July to about October to about 2 inches and all my eyebrows and eyelashes came back beautifully and now it’s as if everything has stopped growing and my eyebrows look really sparse again! What’s all that about? Has anyone had the same? I’m going to try the Regain mousse again I think.
Couch to 5k is going ok, I’ve got to week 7 and it’s getting really tough now so have had to leave 2 days in between runs but I’ll get there, no I know I will do it but it might take longer than I thought. I’ve had to take a step back from saying to myself ‘you have to’ to ‘just try to’ and if I have to be more kind to myself then so be it.
On the portacath wound, I have an appointment at the beginning of December with my plastic surgeon and that is something that I am inpatient for as I’m mindful of the time that it might take to get a date for surgery and then the time it will take to heal going into next year. I can see this stretching more & more into the Summer and I’m booked to go to Greece next September, sounds very me me me doesn’t it but I really have missed going abroad and swimming in the sea plus some proper sun! This is I know is what I need!
Love to all, hope you all have got something to look forward to in these darker months 🥰🥰🥰🥰
@Gelbel Hi Angela (Gellybelly), just popping on to say a quick Hi to you. Glad and pleased to hear your good news and that you're doing well. Long may it continue for you, Gel.
Love and all good wishes to the rest of you too with your treatments. Delly xXx
Aw @Rainbow70, so sorry to hear about your step-dad. Many condolences to you and your family. I'm glad you're finding solace in knowing he's reunited with your mum. Sending you hugs.
@Kaz11 What are you like? Mind you we all have those niggling doubts. As soon as mine creep in, I shake my head to get them out. Usually successfully.
I was happy to get the copy of my follow up appointment letter to my GPs and the consultant saying no evidence of disease or metastases following a good old feel all over. I was also impressed with how she told them why she was telling them to stop the ibandronic acid tablets "..... and severely interfering with her lifestyle."
That letter arrived on the anniversary of me going to my GP with 'a lump'. Not long for the diagnosis, then operation etc anniversaries. We're surviving a year ladies - very probably the hardest year we've ever had.
Silly people - probably snap because they're embarrassed or don't know what to say. Talking of not knowing what to say, the numpty who ruffled my hair and got a gobful is totally ignoring me. Idiot.
I hope you are all living life to your (new found) max.
Love and hugs all round. 🤗
Dear @Rainbow70 , so sorry for your loss. It must be a big shock if it was sudden. Sending huge hugs to you. xxxx
Forgive me butting in on here, but I didn't want to pass by without offering my sympathy to you @Rainbow70 I'm soo very sorry for your loss.
Just wanted to send you ALL some cheer with an instant sunshine flower.
And also say Hellooo to Gelbel (Gelly-belly!) Hope you are doing well, dear lady.
hope you are all doing ok ?
last week we had a sudden family bereavement, my step dad who has been part of my life for the last 46 years❤️🥲. We are all Devastated, taking comfort knowing now reunited with my mum❤️❤️.
just wanted to pop on to let you know @Teagold I have been thinking about you today getting your biopsy results . @Kaz11 So pleased your follow appointment went well , I can relate to those thoughts of convincing yourself its going to come back. And for those people who are making a fuss that they didn’t know, it’s your story to tell !! I haven’t been back to my workplace yet , I’m not looking forward to it.
love to @CrazyCatLady @hopeful1974 @Gelbel @Leftygurl
Good morning everyone and thanks so much for your good wishes re my appointment.
Like you @Teagold although I don’t like going for appointments as such at the hospital there is a familiarity about it and I feel like I am going into a safe place if that makes sense. I also know I am seeing people who understand.
I arrived early on Tuesday as didn’t know what the traffic would be like due to the COP conference so ended up having a good blether with the BCN before my appointment. Anyway surgeon examined me and said he didn’t think there would be anything showing on my mammogram. I find some areas tender on both sides and always worry but the mammogram on my non surgical side was clear so that was a relief. I asked loads of questions as usual and said I had been really anxious as had felt like I was being hit over the head with stories about secondaries in the build up to my appointment. So much so that I hate to admit when I was out for a walk one day that I convinced myself it was inevitable it would come back and was writing my obituary in my own head! Anyway he said it’s not inevitable and said to remember that my boobs are sisters and not twins (sorry @CrazyCatLady)! which I thought was a good analogy. He wants me to stick with the Letrozole which still makes my joints ache but I suppose that is preferable to cancer! Bit disappointed but hey ho. Think he would only have changed it if I had crawled in on all fours! He also said they would not remove the left sister as a preventative measure as that would be too aggressive an approach in my case. Next stop plastic surgeon later in the month to discuss port removal and discuss if anything needs done to the implant capsule after rads which has caused it to constrict. Still to think about surgery on left side - I change my mind on this all the time. Came out of the appointment feeling better but like you @Rainbow70 the appointment was my year anniversary too and as you say the diagnosis, op etc was all as clear as day in my head again.
@Teagold hopefully the biopsy done on the lump is ok. Like you I had this a few weeks ago although as mentioned above I was told it was the rads which had caused this. Totally get the anxiety around it though so sending hugs. Typical though when one worry goes and another appears re the mole on your foot. Know what you mean re trying to get a GP appointment so if I was you I would speak to the onco about it when you are going soon anyway. Hope that despite this you are enjoying the reflexology.
Glad you got your COVID jab. I was getting fed up waiting and also stressed but a letter came in at the end of the week so I get my flu jab and the booster next Sunday. Concerned that I will get both at the same time in the same arm but that’s what they are doing up here.
As everyone on here has said I totally agree with sticking only with the supportive friends now. We have all climbed mountains during all this (and harder for us during COVID) so don’t need the additional stress of people who are not worth bothering about any more. I am saying that but I know how hurtful it is. Also fed up with work colleagues making a drama about not having known about my diagnosis. It’s not about them it was about me trying to deal with the diagnosis of a life threatening illness and wanting to keep it private. They need to deal with it. Try walking in our shoes before criticising!
On the work front am so busy at the moment that I was burst last night. Will calm down in a few weeks though and then I will take some time off.
PS also finding my balance at times not the best either! What are we like??!!
@Rainbow70 thanks for your very lovely words - and also good to know I’m not the only one tumbling over and amusing the family 😉. How did you find yesterday’s anniversary? Another milestone, and look how far you’ve come, how far we’ve all come. I totally agree with what you said about being a different person.
@Kaz11 how did you get on at your appointment? Hoping all ok and that you’ve had a good week.
Back to the doc yesterday for my follow up and this time ended up having a biopsy of this little lump on top of my implant. The needle biopsy didn’t show anything nasty so now waiting for the core results next week but hoping hoping hoping that it is what they seem to think - some sort of scarring or fat necrosis. Same doctors, same scan room and exactly nine months to the day since my very first appointment and diagnosis so I felt I was reliving the whole thing too. Except that I know them all now and the place feels familiar rather than terrifying. I feel a bit more reassured now and also glad that the needle didn’t puncture my new boob!!
However, seems to be that we skip from one worry to the next. Having my lovely reflexology appointment last week and the lady who does it commented that a mole on my foot was very dry so suggested I get it checked out. She said her husband (who had chemotherapy) also had dry moles and sunspots after treatment and went to get them all checked when he finished and all fine but obviously this sent me off on a bit of a tailspin. Has anyone had anything similar? It’s so flipping difficult to get a GP appointment these days I’m wondering whether best to mention it to my onc when I see him in two weeks as he also is a skin specialist. Anyway although I didn’t really want anything else to worry about, I’m trying not to obsess too much as I’ve had the mole for ages.
Went into work on Tuesday for first time and was really lovely to see everyone - tired after a full day of chatting but enjoyed it. Everyone being v supportive about not racing back/taking time to ease in etc. Im starting to pick up a few more regular bits of work now which I thought might be better than a cliff edge in January but doing it as and when and a bit below the radar so as not to get overwhelmed. @CrazyCatLady are you still signed off for now too?
Went to a fireworks display last night - so lovely to do something so normal and fab to see the kids having fun. Luckily while I was in hospital yesterday I managed to get my third covid jab so that’s a bit of extra reassurance too.
I hope everyone is fine and that you’ve all had good weeks, and here’s to a lovely peaceful (worry-free 🤞🤞🤞) weekend.
@hopeful1974 congratulations and well done on your last chemo and what a lovely photo of you. I hope the side effects haven’t been to bad for you and you have rested up over the weekend . Finally you have planted the flag at the top of the mountain ..👏❤️.
@Teagold your holiday sounds wonderful and just what you needed. Omg falling in stream, hope you were ok ? I managed to tie myself up walking on our holiday, my laces got hooked onto top hook of walking boot and ended up on the floor 🤣🤣 my fault for not doing up the laces to the top , but did make us all chuckle !! I’ve not had bone medication mentioned either so it will be interesting to hear what they say . I was pre menopausal so put on Tamoxifen. As for so called friend .. texting x3 times !! You’ve nothing to feel awkward about -and if you don’t want to see her then please don’t feel pressured .. concentrate on yourself and on those who are supportive. Sounds like you have a lot of supportive people around you. It’s the little things that mean the most and we never forget them . Sending you love for Friday , hoping you are thinking about the reassurance the doctors gave you, I know it’s difficult as our mind just spirals out of control.
Will be thinking of you @Kaz11 tomorrow for your follow up.
It will be a year on Friday since I was diagnosed. Its like I am reliving it all in my head and what’s happened since then. I’m certainly not the same person I was before . It’s so helpful to have this forum as we all understand and can relate to each other especially when others just don’t get it.
Fantastic pic @hopeful1974
You smashed it, well done you!
Hope you have been having some well earned rest this weekend and getting lots of TLC.
Love and hugs
Hello lovely ladies
Wow so much to catch up on here and it’s really fab to hear from you @Leftygurl - so glad that your wound has mended and just amazing to hear about your epic climb.
@hopeful1974 YOU DID IT!!! 👏👏👏 well done and massive hugs to you. What a lovely photo too - big beaming smile. So happy to hear they have reassured you re need for scan/stage etc that all sounds so positive. Hope the sfx aren’t too bad after the last round.
@Gelbel your holiday sounds brilliant, just what you needed I’ll bet - sun, rest, nice grub etc. And great news re infusions, so happy for you not to have to keep on with the tablets.
@CrazyCatLady really sorry to hear that you had difficulties with the first rads sessions - is all done now? And how have you been feeling? Also hope your daughter is doing ok.
@Kaz11 sending you big hugs for your appointment on 2nd. Let us know how you get on. I’m twitching too this week as I go back on Friday to have this lump looked at again. I’ve been trying hard not to fiddle with it but from what I can tell it hasn’t got any smaller so I’m anxious that it’ll need a biopsy then more worried waiting and I can easily spiral and imagine being told “bad news”. Doesn’t help that it will be exactly nine months since my original diagnosis - also a Friday, also the 5th of the month, I know that doesn’t necessarily mean anything but it will add to my worry. As I said before, trying to take some comfort from the fact that three doctors said they weren’t particularly worried about me but I was sort of hoping it might just vanish!
By the way, I was nodding my head reading what you said about nurses not being as attentive - when I went in last time I could see them all rushing about being busy and wanted to stop and chat to them as came to feel really close to some of them during chemo so it did feel strange to see them looking after other people!! And I think maybe they didn’t recognise me with new (curly!) hair. It made me realise how much they really go out of their way to care for chemo patients who need a lot of reassurance.
@Rainbow70 - totally with you on the friends thing. Some of my friends have been amazing and some of my colleagues (relatively new job) have come to be really good friends through this process. But one of my oldest friends (25+ years) has just been absolutely absent throughout this. I’ve had three texts from her since Feb when I told her about my diagnosis. And all along the “hope you’re doing ok” lines rather than actually acknowledging that no I’m not ok I feel pretty rubbish actually. I don’t want to sever ties but I honestly feel like I don’t want to see her or that seeing her would be really awkward. This particular friend is very active on social media (I’m not) and I wonder whether she thinks that because I’m not all over Facebook with my updates etc then I must just want to be left alone. But what I have really appreciated this year is those messages from people here and there just saying - hey, thinking of you, do you need anything, here’s something you might enjoy watching on Netflix, no need to reply, sending hugs etc etc. And not taking my lack of response as a sign that I didn’t want to hear from them, texting again even if they hadn’t heard back from me. Just knowing people hadn’t forgotten about me was really touching. Anyway, I know all of us have had various interactions with friends/colleagues etc that have been hurtful in one way or another and it comforts me to read your updates on this topic - once again, good to know I’m not alone.
In other news, the holiday was fab. We were right on the coast near the new forest - did day trip to Isle of Wight (gorgeous), lots of walks, breadmaking course. And I managed to fall in a stream (up to my neck!) on first day in the forest, haven’t seen the kids laugh so much all year. I’m still going with the C25K, one more run of week 3 to do but I also manage a couple of longer runs whilst away. It’s tough going but I think the aches and pains are easing a bit and sea air definitely helped me sleep better.
On the subject of questions for doctors - I've got three appointments in Nov so need to get prepared. Reading all your messages I definitely need to ask about follow up scans and bone medication as nobody has said anything to me about that.
Anyway, just lovely to read all your posts and see everyone doing so well. Big hugs to you all. I would say “have a relaxing weekend” but what with all the C25K-ing and mountain climbing, doesn’t sound like there’s a lot of relaxing going on these days 😉.
Whoop Whoop xxx Well done and so pleased for you 😀 Time to celebrate 🍾 and have a most wonderful weekend end xx
@Gelbel lovely to hear from you. Your holiday sounds wonderful and was very well deserved. So pleased for you. Also great news about the infusions rather than daily tablets. How are you feeling after your Covid jab? I felt pretty fine after my third one - headache and fatigue for half a day and that was it. Lots of love xxx
@Rainbow70 lovely to hear your news. I think your plan of focusing on eating well, exercising, self-care and genuine friendships sounds like a great plan and I will be doing the same. I am doing my final chemo tomorrow for definite, so am very relieved. Of course I will have a few days of feeling off, but I am always better by day 5 so not too long. I will try and post a photo of me ringing the bell. Sending love 😘
Hello lovely ladies
@Kaz11 glad to hear you are still having reflexology still and concert / spa day sounds just the tonic . Nice to have some lovely plans to look forward too . Also hope you are managing ok at work and you have not bumped into that insensitive HR admin person😡. I have had 2 weeks of Amitriptyline 10 mg once daily , I have noticed some improvement to nerve pain / joint aches, I increased to 20 mg last night ! Still shuffle in a morning and if sat for a while, but I would say they have helped . I’m with you on the flash backs of anniversary of diagnosis, sending you love and support for your follow up on the 2nd . As for friends I’ve given up on one of them . Known each other for 45 years .. I sent her quite a lengthy message telling her I’d been discharged from oncology after my rads follow up and the plan for yearly checks . Also mentioned all ok following dermatology appt I’d had as noticed discoloured area on breast scar. All I got back was an emoji symbol . Well I wished I hadn’t of bothered .. Obviously doesn’t realise the impact this last year has had on me .
@CrazyCatLady how are you doing after radiotherapy ? Have you started tamoxifen yet ? Hope your application for ESA/PIP is going smoothly. Hope your daughter is doing ok too . I feel reassured you’ve been told it will be around a year before you can feel back to normal.. ish , is that after all treatment has finished? Hope your support meeting goes ok too.
@Teagold hope you are having a fabulous holiday and enjoying seeing the coast .. I find it so therapeutic, hope it helps . How lovely you growing up in the lakes. I’m with you on the shuffling in a morning !!
@hopeful1974 sorry to hear you had your chemo delayed last week . Hope you are doing ok , Is chemo rescheduled for tomorrow ? 🤞🤞. You will be soon planting that flag .
@Leftygurl hope you are doing ok. It must be hard having to go back to the unit for Bone strengthening treatment. .. glad the breathing exercises calmed you . I have my 2 weekly support meeting in the same building I had chemo, I feel sick every time and have flash backs. Wow climbing Snowdon , what an achievement , well done you .
@Gelbel your holiday sounds wonderful and very relaxing . Good you didn’t think of work and you can count down now to retirement . Pleased you had good news form your follow up appointment and hope heartburn is improving .
Form my therapy I’ve discussed I’m trying to take some positivity from this last year . More self care , exercise and changes to my diet . Trying not to worry about what other people think and focusing on only those friends who I know are genuine. Also have sold our house .. not found anything as yet , but hopefully will soon 🤞🤞.
sending love to you all 🌈xx
Thanks @Gelbel your holiday sounded very relaxing! Very jealous of all that sun ☀️ can’t wait for two weeks in Kefalonia next year, really missed some proper sun for the last two years and swimming and Greek food!
Snowdon was spectacular but not relaxing haha!
Hello lovely ladies,
First of all, @Leftygurl oh how frustrating that your last chemo was postponed. I really do hope it happens when it's next planned. I didn't have one cancelled but was climbing the wall when my last one was touch and go thanks to my reaction to the Covid jab.
@hope1 I am glad to hear your wound is on the mend. Snowden? You go girl. I couldn't climb a snow globe!!!
Good to hear from you both. And of course, you other ladies.
We had the laziest of lazy holiday - literally laid on a sunbed for 16 days. I didn't even go in the sea as it was a bit scummy the day after we got there as we had a storm our first night. Didn't fancy picking up any germs. It was clean after that but you never know - better safe than sorry. I was a very good girl with the factor 50 on my top right 'quarter', keeping that part in the shade between 10 and 5. My legs are actually different tan colours as the right one was often in the shade!!! Didn't even have any late nights as the bit of the town we were in was more a daytime beach resort and the only real tapas bar was open from 8am to 8pm. We tended to go out for lunch to avoid the strongest sun and that all helped with the laziness.
It was/is a real struggle coming back to work. Didn't even think about it when I was away - think it shows I'm ready to go. Only 10 months left!!!
I finally had my post hospital treatment appointment today. All good, op site and all node areas to my head checked - all as they should be and recovering nicely. Best bit - with hardly any prompting, when I explained how the daily bone tablets are a nightmare for me as I wake up at silly o'clock in readiness for taking it just before 6, I stop them from today and go onto 6 monthly Zometa infusions. What I hoped for but thought I'd never get - thought I'd have to fight for a weekly tablet. 1st one 26 Nov.
I did have a Q about if I move from daily to weekly tabs (and now 6 monthly Zometa) she said that the infusions are better as all the active stuff goes into your bones not like just some from the tablets, which is why you take them so often to get the same benefits. OK, having infusions means I have to have my bloods done the day before but hey ho. Let's hope the heartburn goes too as I'm 90% sure it's from the tablets.
I'm a happy bunny. Fabulous to have some good news!
And I asked about reconstruction. They won't do for at least a year after radiotherapy and it takes 6 months from asking to being operated on. That's me asking next summer for late 2022 or early 2023!!! My retirement present to myself. 😁
The one thing I have yet to ask is how much use will yearly mammograms be for me given nothing showed on mammogram and was iffy, at best, on the scan thing they did at that very first appointment before they took a biopsy. Not been offered a scan - so I am making sure I cross the Ts and dot the Is. The consultant is calling me tomorrow to give me my blood test result - in readiness for the Zometa - so I'll ask her then. And she's booked me in for a clinic before the May infusion so can reinforce then.
Third Covid jab for me tomorrow. Let's hope I don't get a reoccurance of the reaction to my 2nd - not least as I am going over to stay with my bestie on Friday and we're going to be ladies who lunch!
I hope everyone is as well as can be and you are all making good healthy, progress.
Love and hugs to you call. 🤗