Oh, and Michelle
I don't know how long you're likely to be in hospital with your op, but I'm guessing a few days.
Tips - If you didn't wear them before for your previous op, button top pyjamas, and start doing your exercises religiously, as soon as poss, due to your extra ANC op. Gently at first, so not to injure your scar areas, but yeh, religiously, to avoid chording and get your mobility back asap. If you do develop chording, ask to see a physio through your team, for specific exercises to sort.
Then, and ALWAYS, take serious note of protection information for your arms. ANC leaves you immuno-compromised, so at much higher risk of infection and developing lymphoedema. All the avoiding blood pressure cuffs, injections, bites, sunburn, scratches. I haven't developed lymphoedema in either of my arms. But DID rapidly develop an infection, after a dog bite to my hand broke the skin. Visibly started spreading (red streak tracking up my arm) within an hour. All the business about taking antibiotic cover if you're going to a mosquito biting country etc. - take it all very seriously. Hope all goes well for you on Monday xXx
Hi again, all you brave "warrior" ladies ❤️ That may be a good name for your running groups/clubs, Running Girl and Michelle xx So sorry for this lengthy post. Hope you don't mind me answering Michelle's questions.
Michelle - Hi again flower. !st (2006) was small lump, but grade 3,E+. I was offered lumpectomy with rads, or mast with full ANC and no rads (at that time SNB hadn't yet been approved in this country) with implant recon or without. I was still single, so desperately wanted recon, as I knew it would affect badly me without. However, my original lovely surgeon was due to retire, and my BCN recommended a new surgeon on the block, who was up to date with all the "self tissue" recon techniques, and was very skilful. Recommended a Latflap, as I'm slender, so not much extra elsewhere to use. I didn't want a big scar on my back, or another on my chest - due to the extra risks of infection. But also, I was a serious walker (rucksack straps and chaffing) and swimmer, so didn't want to compromise one the strongest muscles in my body with a Latflap. So, my desire was only for implant recon.
Sadly, it didn't happen, due to a miscommunication in implant versus self tissue info. But. . . I was happy to still have one of my own boobs left. I have read many other reports from women, some celebrities, who’ve said exactly the same thing. I quite happily made do with a prosthesis and specialist bras. Always had thoughts to still have an implant recon at a later date.
But then . . . Yep, 2nd was another primary thankfully(?!?), rather than from spread. Found it myself, just before my annual check up for/after my first, so obviously mentioned it then! Ultrasound doc said "just a group of cysts". Wished she hadn't - gave me a false sense of hope. Fortunately, my surgeon was conscientiously suspicious, and did a biopsy pronto, so it was just under a year later. My attitude with that one, was to just get rid of the b****r, and deal with recon later. So had another mast and full ANC. But it really smashed me up mentally,
It would have been difficult, anyway, to do an immediate implant recon on one side, and install an expander on the other, to gradually inflate and then have to match up.
One BIG positive about having a bilateral mast, is it’s much easier to match them up for recon!
Yet another but. . . . ”delayed” recon implant recon can take nearly a year to complete from nothing, to expander, then inflations, to permanent implants, and then final the “icing on the cake” (or should I say, icing on the boob!) of nipple recon. Numerous appointments, 3 ops and waiting for things to heal post-op or settle down between inflations. Takes a lot of perseverence, patience and inconvenience. Plus, as happened with me, life can throw a whole load of other brown stuff your way, in the meantime that you’re considering “when” to start it all. Took me until 2014 to get on the recon horse, so 7years (!!), after loss of my 3 immediate family members and a whole load of other stuff (s**t) that also happened following, and has caused and had a massive impact and serious mental illness. I got through all my expander expansion appointments, but then fell off the horse again, due to mental problems, and “still” haven’t got back on it.
So, I always stress, if you are at all thinking of and wanting recon, and it is offered as an immediate option, take it. Get it all over and done with in one go and get it out of the way, rather than delay. Because you just never know what other s**t is going to crop up….. Bear that in mind before your op on Monday. I don't know if you're not bothered about recon, are thinking later or what, but you still have chance to change your mind before then.
Cumbrian Lady - I actually stopped wearing a bra, recently (unless I'm dressing up for something spesh) So specially for you, I take my cami or T-shirt off. If your name indicates where you live - Cumbria's one of my favourite counties for stunningly beeautiful scenery and rambling the fells, valleys and lakes.
To ALL of you, from a now 14yr survivor. Yeh, you’re always left with that seed of doubt that BC leaves you with. But that seed DOES get smaller through the years, no longer becomes your waking thought, and gets more and more pushed to the back of your head. Yes, it can rear its head again. But try NOT to live your life “in fear” of that happening. It may NEVER do. But always be vigilant, with anything new/out of the ordinary body wise, though.
Incidentally, Michelle. Ref the annoyance and frustration of losing a lengthy post. There seems to be a “time-out” for responses. Similar frustrating experiences, with some of my looong posts (such as this one! Sorry again girls) led me to type up my responses in Word then "copy and paste” onto my then opened Forum reply.
Much love to all you “Warrior Women”.😄 Dellypoos xX❤️❤️❤️Xx
@TicTok like you I had chemo first, then an op, which was a lumpectomy and Full lymph node clearance. Then I had 20 seasons of radiotherapy. My oncologist took the belt and braces approach!
I can understand why they are trialling whether to remove the lymph nodes or not I suggest you find out more about that, I wouldn’t like to have to make that decision. Then I had one year of herceptin injections. X
Michelle 21 thank you so much for explaining this to me and I yes I am having my last 4 with those drugs and docetaxel , I did read where it had improved the chances with the target drugs used now …. How does that end then , Do you still have an opp ? But I did have a lot of calcification around it which they said would have to come out 😏it’s hard when you don’t get to speak to anyone to explain during this process only to be offered a trial to have lymph nodes cleared or not 🤔I have no idea on that one . Thanks again for your knowledge xx
@Cumbrian Lady yes a little empathy goes a long way. Because my last surgeon was all I knew I didn’t know it could be this good!
@gardengirl200 I don’t envy you being lopsided, it must be difficult trying to match up. Have you tried the supermarkets online for bras? I’ve had friends who have bought mastectomy bras from ASDA and Sainsbury’s online. At least you have the matching up op to focus on and next year will soon come around once treatment finishes.
Covid has really hi-lighted what the four nations governments have control of due to devolution. I live in Wales and I think our first minister either follows what Scotland does or waits for England and does the opposite! 😂 xx
Hi @TicTok I completely understand your fear, I think it is what we are all scared of. You are right HER2 is more aggressive but if it is going to turn up elsewhere it usually happens within 5 years. I assume you are having pertuzamab (Perjeta) and herceptin. If you get a pathological complete response which has become more common amongst HER2 since the use of those two drugs it increases your overall survival rate.
My original cancer was in 2018, it was HER2+ and in my right breast. I had a complete response and as yet it hasn’t come back. The cancer I am being treated for now is in my left breast and is Triple Negative.
You have to take the positives of your situation and that you are having a good response to chemo is great. After your op they will tell you the pathology of your cancer ie what was left after the chemo has bashed it, I think once they go through that with you you will feel a little more relaxed and other than that it is time cancer free that will make you feel better. I hope this helps, any other questions ask away xx
Michelle 21 Hi thanks for reassurance , my worry is that I will get mammograms probably every year for a while but I have heard of it popping up somewhere else 🤔 where I won’t know till it’s to late as happened to a friend of mines wife 😟…… I really need to get this out of my head and as you say the further you go it gets easier I guess , do you mind me asking how long it was before yours returned ? You must have been absolutely gutted and so strong of you to have dealt with it so well . Take care and love to all xx
Hi @amy46 . I hope nothing we are saying on here is making you more scared. How many chemo treatments are you getting? I found the beginning the hardest mentally, and that I felt less overwhelmed once I reached the half way point. I didn't have any side effects either with the filigrastim, and my bloods were thankfully ok throughout. But I did hate doing them. I had to do them for 7 days after each of the 6 chemo sessions I had, so if I remember my times tables correctly ( and honestly with my brain at the moment that is not a given 😊) that is 42 jabs, which I think is pretty standard for my ER positive /HER negative treatment. It was silly really that I dreaded them so much because,as you know, the whole process only takes half a minute, and isnt sore. I think it just becomes symbolic?? I was SO SO happy after I had done my last one. I have no idea what difference they made to my bloods but they may have made all the difference.
I think chemo is a bit liked childbirth. It's all very well for me to say try not to be scared, because already I think I am blocking it from my memory. It is daunting but you will get through it. I'm pretty sure your running on your stronger days will help loads. Sending you lots of strength.
@Cumbrian Lady @Michelle21 Bras have been a complete headache for me and I envy your respective freedoms!! I must have ordered almost as many as I have had filigrastrim injections! John Lewis/ M & S/ Bravissimo/ Ameona and Nicola Jane - Ive had placed orders with them all and really struggled to get anything that fits. At one stage they were all over my bedroom and trying to match the right bra to the right back to send them back was a challenge! I am a 30G and have had a single mastectomy. I have been given a prosthetic boob which is ridiculously heavy and like a large beige jellyfish. Having breast fed my two kids my one remaining boob is not a thing of beauty and needs a lot of scafolding but trying to get that in a post matectomy soft cup bra seems near impossible. Ive actually reverted to my old sports bras. I hope next year to have a significant breast reduction on my remaining boob and a reconstruction on the other side. I know it will be a big operation, not without risk, and I cant imagine how they will ever look like a match! It doesnt make me feel great about myself physically but of course, as we all are, I am so so grateful and hopeful that my BC was caught in time and so I try to keep the physical impact in perspective.
@Love running - also think your running club for women with BC is a great idea. If there was anything like that round here I would definitely join. And it's pretty well Covid safe. I also love your playlist and your writing and the Carrie Fisher quote! I also love your songs @Purpledaze and I'm going to make a playlist with everyones fab suggestions.
@Michelle21 Dont worry at all about the booster thing. Each gov's approach is unpredictable. I'm in Scotland and its never a given that the scottish gov will follow the English one. In fact they really like to do their own thing🙄. That's great you.ve got such an early date for surgery! Good luck, good luck, good luck.
@TicTok really good news about the MRI!!!!
Love and strength to all
That's a bit like my story - the surgeon I first saw was not nice, he hurt me, never looked at me, and mumbled I was not looking forward to him operating on me.
The morning of my surgery a lovely young female surgeon came to see me, she was SO different to him she explained he could not do my surgery (the feeling of relief I cannot begin to tell you).
After my surgery, before I was released to the ward she came to see me - just to say 'it all went well'.
I don't like to criticise the doctors but some empathy would be so welcome - we are terrified and totally in their hands.
I wonder if they start out with good kind intentions, but lose them along the way, do they stop seeing us as people and just another one for them to operate on. When I went back for my surgical check-up I saw her again and she was just as nice and even shared a joke.
Oops I forgot to say I am also up for meeting everyone at a run when we are through our various treatments xx
I have had a couple of busy days. Yesterday I had my pre op assessment and today I met my surgeon, a female. Well what a contrast to my last surgeon who was uninformative and showed no understanding. I only saw him once I never even saw him or anyone after my op. He has now retired.
So my surgeon today was so simpathetic to what I have been through, which obviously made me cry 😭 But then she made me cry in a positive way as she said she can do my surgery on Monday which is earlier than even I had anticipated!
The negative thoughts had started to creep back into my head ie it’s growing and dreading again, event though I’ve just had 20 weeks of chemo. I didn’t say they were rational thoughts!
Once again COVID is a pain because we all have to isolate from Thursday but I know it is the same for everyone here and I really don’t want to take any chances.
So after Monday I will not need a bra as I won’t have any thing to go in it! xx
Hi @gardengirl200 I’m sorry if I caused confusion it looks like we will now be getting the booster jab, hooray!
@Purpledaze congratulations on finishing chemo but sorry you have been feeling low. I have had similar feelings whilst waiting for my surgery date. Chemo is a reassuring comfort blanket whilst also being something that physically drags us down. I’m sure you will be able to pick yourself up, maybe getting your trainers out will help with that.
I am not looking forward to rads for that reason, feeling like a piece of meat on a slab! Last time I had 20 sessions, my skin broke down and I became fed up with showing the world and their dog my breasts!
I love your play list and a great idea to share it here! I have 2 songs; Fight song
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me
and In my Blood - Shawn Mendes
I have never put my bra back on - the poorly boob is much larger than the good boob so bras are out😀
I wear cami tops (very pretty) not that they are on show - and at 64 my modelling days are long over 🤣 so me and my boobs hang free...
Love running …..see another pic for your book 😂…… think I need a smaller bra now I seem to be shrinking 🙄…..that journal sounds lovely what you have done for your mum and sister ❤️ That’s unbelievable all those ladies in the same boat it really is scary , must be awfull not understanding the language though …..like the quote 👍
hope you all have a lovely day xx
Good morning @delly
Thanks for popping by. You are right this group is amazing. I am so glad I joined it.
To them too, I am taking my bra off 😂😂😂. I just got a flash back from the beach In France in the 80ies and 90ies, and my mum and her friends all topless. This will be the picture of the day.
Wish you a fantastic day
Good morning @amy46
I wanted to share my experience with Filgrastim.
I started my chemo in May with 4 EC two weeks apart and I was injecting in my tummy one shot of Pelgraz (one type of long lasting Filgrastim) after each cure. I never had any troubles with my white blood cells, on the contrary, Pelgraz was so potent that I always had more leucocytes than normal.
After the EC, I went on the weekly paclitaxel and at first I was not given any Filgrastim. But after my 5th cure of paclitaxel, my white blood cells were down the drain and I have to postpone one week and was given again Filgrastim: 2 shots of Zarzio after each paclitaxel. It did the job until cure nb 9. I am now borderline each time (1.4 - 1.5 leucocytes). I suppose that it is because my body is starting to wear out now (so much a gril can take😉) but the medical team thinks it is fine as I am almost done. Only 2 left.
Personally, I did not experience too much side effects from Filgrastim, no much bone aches or joint pains. I know that it is common though. Can it be my training that help? I don't know.
So overall, Filgrastim does the job.
Lots of hugs,
Thank you for your lovely words about my writing. In a time where myself confidence is rock bottom, these made me feel so good.
I am not so sure about writing a book. I love the idea though but I am not a confident writer, neither in French, Swedish nor in English. When writing on the forum, I just follow the thread and answer it with my feelings. The words come easy, it is a conversation between us.
Sometimes, I read my self again and see that my brain goes faster than my typing... and I see all the typos, grammatical mistakes, the with that should without...
Beside writing here in this forum, I keep a journal for myself to put down my emotions. I also started a photobook with pictures and comments for my mum and sister. Since I have not told them about this all BC, I wanted them to be able to read my journey. I hope I can finish it before going to France in October (if nothing prevent me to go) or at Xtmas. May be this photobook could turn into something else later. We will see if I will ever build the confidence. If I translate it to English, I will share it with you.
@TicTok you are right about a big sisterhood out there. Since starting this Cancer journey, I have met many sisters. Few weeks ago, I wrote to two of my collaborators to let them know that I will be away a while longer and to tell them why. I was supposed to start working again in August but decided otherwise. They picked up the ball in May when I started chemo but they did not know why I was gone. One of them wrote back to me yesterday in private to let me know that she too went through BC 5 years ago and offered her help. I was so touched! I have a new colleague that just go diagnosed with a triple negative BC and she reached out. And Thursday, I will meet a French friend of a French friend here in Stockholm that also just found out she has BC and is really scared to start her treatment here in Sweden as she does not speak Swedish, and does not know how the health care system works. Although knowing that it is the most common cancer in women, I was surprised to meet so many sisters in such a short time. May be my experience especially around training and running through can help them.
I finish by a quote that I found from Carrie Fisher, which fit with today's post about confidence.
'Stay afraid but do it anyway.
What is important is the action.
You don't have to wait to be confident.
Just do it and eventually the confidence will follow'
Who knows the day is young.... and with that i wish you a wonderful day
Hi @delly thanks for your support and great to know that you have got through cancer twice. You are right these are an amazing group of incredibly supportive women.
Do you mind if I ask a few questions about your cancer/op? Was this a reoccurrence or two primary? Did you have a recon and how is it with both ANC? My situation is I had HER2 in the right in 2018, had a lumpectomy with ANC now I have TN in the left. I will be having a bilateral mastectomy later this month with ANC, I see the surgeon today to find out the date. I was wondering if you have any words of wisdom for me.
I'm not going through chemo, (Bilat masts and both with ANC 2006/07), and been a supporter on here since 2014. But I've just been reading through some of your posts on here, and could NOT pass you all by without saying -
What an amazing bunch of women you all are, and what an incredibly supportive thread this is.
Despite the seriousness of what you're ALL going through, I've been sat chuckling!! 😆
Especially at Tictok's ref to your lump as "Boris"!! So blummin funny😄
And Purplehaze - you're husband's "playlist" addition - him saying you look like an "Alien" without your eyebrows and lashes!! Comical, ha ha 🤣
Talk about making light of something soo serious, hey!!! Gutsy women, all of you.
I not only take my hat off to you ALL, but more relevantly, take my BRA off to you ALL as WELL.
Thanks for the giggles, lovely ladies. I sooo hope you all recover well, from your various different "Boris" treatments, and NO longer look like "Aliens" (be it beautiful ones, though) very SOON 😆
Wishing you all STRENGTH to keep kicking that BC BUTT, girls. Am sending lots of love and speedy healing thoughts to you, DoolallyDelly xX💓Xx
@Love running I also love reading your posts. Maybe you could write a book as one of the other May starters suggested? I think it could be a winner (maybe not a best seller as your market might be a bit limited 😂) but certainly a popular choice for those in the BC club!
It’s so interesting but also a bit scary reading the posts on here as I am near the start of my chemo and you guys are closer to finishing. They give me filgrastim injections for three days after each chemo but it sounds like many of you have still had to delay treatments due to low white count is that right?
I think the cancer run club is a great idea and I also love your plan to get together to do a run at some point. If you’ll have me I would like to join even though I’m actually an august starter and high jacked my way onto your thread when I spotted the posts about running 🏃♀️ xx
Purpledaze &Loverunning thank you for your good wishes ….you just made me nearly cry I had forgotten about that Bon jovi song I will put it on Alexa tomorrow when my husbands not here 🥲, love your list also , that cancer running club sounds a great idea , there is lots of people out there with that life sentence overe there head😱….. ok mine has shrunk but it’s not going to go out my head wondering where it’s going to turn up next as it’s an aggressive Hr2 positive which is known to turn up again ! It’s like prison sentence without going to jail ……you really should write your journal it would be amazing how you write, it would be a best seller in uk , fiancé and Sweden 😁 …….love to all you ladies xx
Good afternoon to all of you beautiful ladies,
I hope you started well this new week.
I just got my 10th paclitaxel this morning. As every Monday I was worried about my white blood count but this time, it made just above the threshold. Only 2 left now.
@TicTok : so happy to hear that you beat the crap out of evil Boris 👹and you exterminated its potential offsprings 💣. Good luck today for your 6th chemo.
@Purpledaze Well done, you made it to the end. What you and others describe of the post chemo emptiness scares me. The weird safety net that chemo brings, the reinsurance that chemo is the killing the bad cells in us, the living in the present day by day and embracing the good days and suddenly nothing. Good luck with radiotherapy. Like you, I have not been drinking since the diagnosis and I have ordered my favourite champagne (not wine) : Ayala Brut Nature. I will probably end up giggling like a 5 year old after my first flûte. I am so looking forward to it. Actually I would top it off with oysters, for which I got a craving when the bad taste in my mouth started again. I have this strange idea that the fresh salty sliminess from the oysters would help .
Welcome back to the running/walking mood. Take one day at the time, your fitness will return. Don’t put pressure on you, just listen to your body. It will guide you.
Great playlist you made, I could add :
1 -Its my life by Bon Jovi. I heard it on the radio while driving and it was at the beginning of my BC journey, and for some reason it spoke to me and I cry each time I listen to it.
‘It's my life
It's now or never
But I ain't gonna live forever
I just want to live while I'm alive
(It's my life)’
2- The operation by Charlotte Gainsbourg. Love hate relation between me and my body that failed me and produced this BC.
‘Our love goes under the knife
There is no room for doubt
Our love goes under the knife
Two lives may be saved’
3- I am a survivor by Destiny’s child. My motto when feeling down.
‘I'm a survivor (what), I'm not gon' give up (what)
I'm not gon' stop (what), I'm gon' work harder (what)
I'm a survivor (what), I'm gonna make it (what)
I will survive (what), keep on survivin' (what)’
@Sammy73 So sorry for the delay in treatment. I remember how devastated I was when I had to postpone due to low blood value. It just sucks and I got so upset with people telling me that it is just one week. Any delay just makes it so much harder to project yourself at the end, when we have been going on for months already. We will finish together more or less, I should get my PICC line off the 27th of September. Can’t wait.
@gardengirl200: I am glad that your nurse confirmed the salt tip. I am always a bit cautious giving non medical advice. I have received some many funky ones from well meaning friends from doggy mushroom, to holistic therapies, gurus etc… I am not against trying alternative approaches, but just in the middle of chemo, I decided to stick to one course of treatment.
@Michelle21: Hurrah congratulations for finishing your park run and reclaiming a piece of your old self.
I did my own park run yesterday – run around the lake behind where I live. No real cheering but I could still hear them in my head.
I have thinking for while, about reaching out an old running club I went to before I torn my cruciate ligament and see if they would be interested in starting a running group for cancer patients. I have not found any group in Stockholm when I started my journey and I can’t imagine I am the only one looking for such group, especially when seeing all the ladies in this forum who had been running before they started their journey. Let’s see if this idea can take off. I would like to encourage others to give it a try even when undergoing chemo.
My surgeon suggested to reconstruct my nipple using part of my left one and tattooing the areola. I have also a smaller bust, so the difference is not visible with clothes or with a padded bra. Just some imbalance with a firm nippleless boob 😃 and a little sagging one 😔.
If you want to come to Stockholm, I would be happy to host you and guide your around.
@Coastal Well done for finishing chemo and I am so sad about how this book made you feel. Not every reading is helpful, unfortunately it never comes with a warning. I wish I could give you a real hug, instead I give you a virtual one.
In May 2021, I attended a conference by a French research group in Bordeaux (NACRe (National Alimentation Cancer Recherche): https://www6.inrae.fr/nacre/Accueil/NACRe-network (english site). Three objectives to help prevent cancer was presented:
The conclusion of the conference was also that there is still a lack of evidence and a lack of proper studies to specifically pinpoint one type of food that could influence cancer development. It is mostly multifactorial.
I consider that I have lived through the principles above and I got BC. Reading testimonies, there are many women that had an extremely healthy life style and still got breast cancer. For my own sanity, I decided to not try to search the reasons why I got BC. I can’t change the past and as you said we can’t go back.
Like @gardengirl200 and @Sammy73, I have adapted my diet to some extend, giving up alcohol, caffeine and I tried to eat less meat and to cook my meals from scratch. I want to be gentle on my liver that needs to process the cancer drug.
Life is also about enjoying ourselves.
For me, food is a big part of my life. When it is over, I want enjoy again the occasional glass of wine (may be I will become more selective or snob with the wine I drink), a piece of meat once in a while and sweets of all kinds when I feel like it. I can't imagine my life without it.
I know I can’t control the future and the cancer might come back regardless my diet. I will be scared at time, but I hope that I can do as in the Bon Jovi song, 'I just want to live while I'm alive’
I wish you all a good week. may you overcome the challenges, the deceptions, the pain, the sadness and the tiredness.
Lot of hugs to you all.💕
@TicTok that's great news to hear that your last MRI showed Boris is shrinking and lymph nodes now clear. So pleased for you! Hope tomorrow's chemo goes to plan and things move smoothly for you to the end of chemo xx
Sammy 73 …. So sorry your treatment has been delayed 😟 you must be so gutted , I know I would be , good luck for the 30th ..
gardengirl200 …. I have been taking vit D and zinc since the beginning I asked and they said that was fine .
purpledaze ….well done for reaching the end of your chemo … I get where you are coming from as everything drops off and you are alone after like you say always having appointments,good luck with radiotherapy …. Ps like the song list 👍.
love running …I would definitely be bringing up the rear , I try a bit of run / walk but do loads of walking 🤨.
well my bloods are ok for my 6th chemo tomorrow so I will be following Sammy 73s tips and hope for a better time 😄
I also got good news from my MRI Boris has been destroyed significantly and my lymph node is now clear 😄 so looking forward to hopefully finishing him off with my next 3 chemo’s
Love to all xxx
@gardengirl200 sorry, I don't know anything much about vitamin supplements. Asking your oncologist sounds like the best bet. I can say, however, that I will be joining you in bringing up the rear in the group run 😂 - am definitely going to dust off those shoes; love the idea of all doing a run together!
Sorry to have been so out of touch. I'm not sure where the time goes in this strange BC landscape we are traversing. I think the chemo fog that I have read about has definitely enveloped me as I have found it harder to concentrate on more than one thing at a time, or for very long!
Sounds like we've all been through some really challenging times over the past weeks. I really hope that for all of you things settle and no more nasty surprises or setbacks in treatment schedules.
I have now reached the end of my chemotherapy and can't quite believe it. I had my final paclitaxel last week, but couldn't celebrate in any way until I had finished the last of the filgrastim injections (ughhh), which was yesterday. It's strange, I was so looking forward to this moment - the end of the dreaded chemo, and don't get me wrong, I am sooooo happy to have that behind me, but now it's happened I find myself feeling kind of adrift, almost as if there is nothing to 'hold on to'. It's like it's been 'chemo-chemo-chemo' and then suddenly nothing - no blood tests, no check-in calls with the oncology team, no follow-up appts, etc. This and the tsunami of tiredness have made me much more emotional than I have been before now. Like others of you have mentioned - I've been getting weepy at the drop of hat... However, I've been having a good talk with myself - LOL - and am determined not to let lack of chemo derail me (that would be ironic since chemo-world certainly didn't exactly fill me with joy)!!
Next step is radiotherapy. Had my planning scan last week - felt rather like a slab of meat at the butchers 😂 but have to say the doctors were really lovely and set me at ease. First RT session is on 22nd Sept - I'm only having 5 sessions, so should have finished by end Sept. I've ordered a bottle of my all time favourite wine in readiness - I haven't drunk alcohol through treatment so i will likely fall off my perch when I do have a drink, but it will be with a big smile on my face!
The posts about running are very inspiring - can almost hear the cheering and feel the heart pounding. My running shoes have been winking at me from the back of the cupboard and I think I will give them a knock-kneed wobbly out of breath outing soon. Like some of you have shared, I have also felt the pounds piling up as eating was either the only time I didn't feel nauseous or the only thing I had energy to do! So getting back out there for longer dog walks and going for a run would be good; I'd like to increase my energy levels and fitness as I feel so terribly unfit at the moment. It would be good to have a challenge as well. This is what I love about this forum, through your advice, sharing experiences, and encouragement, I have found inspiration - wonderful!
Music has kept me sane during this last push to the end of chemo, and I've started making a playlist of songs that for different reasons resonate with me about this crazy BC experience - I have quite a warped sense of humour so some songs play to that - and I thought I'd share some of the list with you lovely ladies who have helped to keep me sane!
* Tightrope - Janelle Monae (how it often felt/feels in treatment... and failing that a great dance tune to get me off the sofa)
* Hear My Voice - Celeste (because sometimes having cancer can feel like having no voice)
* Who Needs Sleep - Barenaked Ladies (for all the sleepless nights)
* Loving The Alien - Bowie (made the list because my husband lovingly calls me his "alien" thanks to the no eyebrows, no hair, no eyelashes 😂)
*Gonna be Sick - The Do (with lyrics of "I'm gonna, I'm gonna, I'm gonna throw up" how could it not be on the list 🤣)
* Just Face Your Fear - Curtis Harding (says it all...)
* Que Vendra - Zax (reminds me that cancer doesn't define me or have to shape my life)
* This is The Day - The The (for last chemo day / test results day / end of treatment day)
* Brave - Sara Bareilles (for all the words unsaid)
* Pink Panther Theme tune - Henry Mancini (because in amongst all the seriousness, a little silliness really helps)
* Hang on Little Tomato - Pink Martini (resilience)
* Beauty in The World - Macy Gray (despite the s*#! of BC there's still lots to love out there)
* Talk To Me - Cavetown (sums up this forum and the support and reassurance I have found here)
* Don't Stop Thinking about Tomorrow - Fleetwood Mac (mantra running thru my head on the worst days - keep looking forward)
* A Pocketful of Sunshine - Natasha Bedingfield (love the idea of having a pocketful of sunshine to draw on when needed - uplifting song)
If anyone has other suggestions, I'd love to hear them to add to the list!
In the meantime, I hope you're all doing better than yesterday and running, sofa-surfing, dancing, walking your way closer each day to smashing BC way over the horizon xx
Hello all, I have another question ( sorry).
Does anyone have any info on vitamin supplements? Ie whether they are safe post cancer or not. I know the official line is not to take them during chemo but what about afterwards. A friend mentioned to me that they are not recommended post BC on the basis that they stimulate new cell growth and this can stimulate cancer cells in the same way. I’ve googled it and there does seem to be research that backs that up. I will ask my oncologist when I have my final call with her post rads but I just wondered if anyone had come across this issue, as it surprised me.
@Michelle21 do you think we won’t be eligible for the third vaccine/ booster? I thought we would be as all have compromised immunity. Covid numbers really high in Scotland at mo.
@Love running We really should all do a run together! Although I might be bringing up the rear! Thank you for the tip re salt. I spoke to my GP nurse yesterday and she suggested the same and also prescribed the fluconazole that the administrator here recommended, so hopefully that will sort it. Of course I was paranoid the feeling of constriction was oesophageal cancer but I am told this is really very unlikely. But as we all know, this process sets us up to worry about everything.
On that note, thank you @Michelle21 for the mention of that book about living post treatment ( can’t access your message/ the title at mo ) but I’m definitely going to take a look at that. Xx
I just had a rash come up on my leg last Sunday, I have felt genuinely well especially as it's my good week b4 treatment was due!! It hadn't gone by wednesday so went to pharmacy and still there friday!! So doctors it was, I have been lucky so far, headache and my rash is now sore but fingers crossed nothing else, my chemo manager said this can happen and also with radiotherapy as its all to do with dormant chicken pox it stays in us and rears it's ugly head as shingles,usually once we are over 50!! Im 2 years off!! Obvs!!
Low immune and nerve endings !!! Doesn't help not having my right arm lymph nodes I'm sure!! Joy oh joy!!
We are hosting a big work thank you party for our team tomorrow so had to ring round everyone to check they have had chicken pox!! And not pregnant!!
Nothing is ever easy 😪
Just need a break from all this shit!! I know it will come.
I tried a book about eating, living better i put it down after I realised I don't want to be a vegan/ vegetarian and I know we all indulge sometimes and so what, all my meals I prepare from fresh daily, we allow ourselves a treat once a week, going out or takeaway and I have minimal coffee, but I enjoy wine and that's how I roll. I walk with the dog daily, I would go mad if I was on a strict diet too.
We are who we are and cope the way we can.
God please let the 30th take place and I will be rid of my picc line at last!!!
Have a great weekend!! Xx
@Love running Yay I’ve just returned from parkrun and it was great! I got emotional crossing the finishing line and the volunteers were cheering me over. Another piece of me reclaimed!
I totally get where you are coming from with a bit of breathing space before or if you have recon. It did make me laugh about the nudity being normal in Sweden, it reminded me of a holiday in Slovenia where everyone went naked into the sauna. As I’m sure you know it’s just not British! 😂Regarding your recon the nipple tattoos look very realistic and quite easy to do relative to what we have been through. I had lumpectomy last time and although I was slightly smaller on that side it was not noticeable in clothes. My body and mind most certainly need a rest before I consider what’s next, if anything.
I also ate to rid myself of the bad taste and drank a lot of sugary drinks for the same reason and put on quite a few lbs. I’m happy to report I have already lost a couple of lbs by getting back to a normal diet/exercise. I’m sure you will too once chemo isn’t controlling what you eat.
🤞 your Neuropathy doesn’t get any worse and that when Sweden drops all its Covid regulations your hair stops social distancing! All restrictions have been dropped here and even with a high vaccination rate cases are quite high. I am keeping a close eye on the hospital numbers and hoping it doesn’t delay my surgery. Our health board has just said there are to be no hospital visitors from now. No we will not be eligible for the 3rd vaccine. I had both of my jabs over 6months ago so am a little worried that it’s strength is waning but I can’t do anything about that. I am just being careful where I go.
The runs in Stockholm sound good fun, especially the picnic at the end. I will definitely get to Sweden one day soon! x
Arrgghhhhhhh just typed a reply and lost it, very annoying! So I’ll try again….
@Sammy73 I’m so sorry to hear you have shingles and that has postponed your treatment. I have also spent time wondering what I did that was a so bad in life! I have come to the conclusion it was bad luck getting BC once and really really bad luck getting it twice. Like @gardengirl200 says we are all due a mountain of good luck after this. I hope you aren’t too poorly with shingles and that your last Docetaxol is kind to you. x
@Coastal I haven’t heard of the book you mentioned but from what @gardengirl200 says it basically sets us up to fail, we all have to do what we can and what makes us feel better and in control. Regarding the future it is hard to think about and you are right you will never be quite the same as you were before. I used to get quite angry when people talked about the new me as I was happy with the old me and didn’t want to change however we are always evolving as people, we are not the same after marriage, children, losing parents or someone close, or any difficult life event. I remember coming to terms with this and grieving over losing the old me. Those feelings didn’t last for long as we have to move on in life but are horrible when they happen. I can also say that although looking into the future might seem over whelming now it does get easier the further away from all of this you get.
If you haven’t read it Google ‘After the Treatment is finished’ by P Harvey. It may help, I found it quite useful. X
@Sammy73 hi there. That is tough. Really shit. Bloody bad luck to get shingles which in itself I gather isn’t that nice. How are you feeling with it? I just hope there is a big pile of good luck waiting for us all round the corner. Keep strong. There are certainly bumps in the road - some bigger than others - but you/ we will get throufg this treatment. Xxx
hi there. My mother bought me that same book. I found it incredibly upsetting and in the end I put it in the bin as it brought me down so much. Obviously everyone is different and maybe there is something in it, but I knew I could never eat the Uber strict/ extreme diet she advocates and would just feel guilty/ a failure. I also didn’t like how she undermined the oncologists/NHS , in whom I feel I need to have a certain amount of trust / respect as the professionals in their field. I spoke to my oncologist about it / diet generally and she just repeated advice to eat a healthy balanced diet most of the time, but not to deny ourselves the odd treat. Although losing weight is different; I am determined to do that. So I am sorry that book has upset u too.
The book I value and return to is the Complete Guide to Breast Cancer by 2 doctors who themselves had breast cancer. They have a chapter on diets and look at the scientific evidence. None of these faddy diets have apparently ever been properly tested in a scientific way.
That said, I have cut out processed food, almost cut out red meat, alcohol and caffeine, and massively reduced cow’s milk, and am trying to loose a bit of weight. I guess we all just have to make the choices thst we feel are right for us and that are sustainable. I just knew I didn’t have the ability to follow that book.
I have just had my pre radio scan too. ( also found it emotional) . We must be on v similar time line. When do you start yours? . I’m the 20th.
@Coastal hi, emotions are funny things, especially with everything we are all having to go through!!
I was due to have last chemo on 16th September but I found out yesterday a rash on my leg is shingles!!!! So banned from chemo suite till 27th September for bloods and picc line flush and last chemo and picc line removal on 30th, I cried like a baby!!!!! Does somebody hate me this much to keep delaying this god awful treatment!!!!
When that goal post is moved or it actually happens its all stressful and emotional, we are all human!!
Have a good weekend ladies x
Thanks @Michelle21 I've had an up and down time since my last chemo. Initially euphoric - as yes, I've finished! However, I started reading a book I'd ordered some time ago (Jane Mclelland's How to Starve Your Cancer) - which was a pretty stressful read and really brought me down again. The book is all about changing your lifestyle to be the healthiest you can be, with a pretty stringent change of lifestyle. It's also quite difficult to read as uses a lot of scientific jargon. It made me think about the future post diagnosis and how although I want to put everything behind me and go back to normal, things have changed and I can't go back.
I had a haircut at the cancer centre yesterday, they were so kind to me I couldn't stop crying in the car driving home. It's the first time I've done that properly since the early days of diagnosis, it felt like I've not really come to terms with the whole thing. I also cried today at my radiotherapy planning appointment which is really out of character as I really try to keep it together generally. It's probably a really good time to let it out this way, and the radiotherapy nurses were lovely to me.
Sorry, I'm rambling a bit, I guess I think it's such a traumatic thing to go through, I can't quite get my head around it.
I hope everyone is okay and you all have a lovely weekend 😍
Lots of love Nickixxx
Let's dream together about meeting for a run for a BC event - I would be ready to travel to the UK. It would be great to meet after all we went through together.
Not sure if it can help. When I was breastfeeding and my baby got thrush, the nurse told me to use a new very soft toothbrush and dip in 'Vichy water' (sparkling water with a high salt content like Badoit or Vichy St Yorre, not sure you can find these brands in the UK but there must be equivalent) and brush gently the tongue and let the baby suck the brush once or twice a day until resolution of the infection. The brushing was removing gently the thrush, which the baby then swallowed and cleared through their bowels and, the salty bubbly water might have had some anti fungal activity. It did the trick on my babies.
I suppose that transposed to grown up, you could gargle some salty sparkling water and brush gently. In any case, it seems harmless and might be worth to try in combination with what your GP tells you.
I hope you will feel better soon.
I am glad you feel good about your surgeon meeting and with the decision about the double mastectomy without reconstruction. I can only imagine how difficult it is to decide what is the best. I only had a lumpectomy loosing my nipple. The surgeon told me that we will talk about reconstruction earliest one year after the last surgery. I am happy to have this time to think. While I consider reconstruction, I am also tired of having my body being manipulated and getting treatments and blood taken. I feel that I might want my body to get a rest from most medical procedures. For the next 5 years I will have to get anti-hormones treatment injected in my tummy once a month and infusions against osteoporosis every 6 months. I feel I need a break. This is of course very individual and it is my own thoughts at the moment. I am going to try to own my new nippleless boob and the scar. The test will be when returning to the pool and the sauna. Here in Sweden, there are no cubicles in the changing room and no separated showers, there are common changing where everyone undresses. Nudity is normal and actually no one really looks at each other. I will see how self conscious I will be.
Thank you for reporting on the after paclitaxel SE. I am very interested as I am going for my last 3.
The bad taste is a SE that came now the last two weeks for me. I did not have it before with paclitaxel. I was so happy after the EC which gave me the horrible metallic taste on everything I was eating. I have been trying to get rid of it with mouth wash but it doesn't work. Instead, I have been eating more because when eating is it not as bad. It gets mixed with the food flavour. And of course, kilos are pilling up... but I will take care of that later.
For the moment, my neuropathy is under control. It comes and goes. I get a reduced dose of paclitaxel since last week, so hopefully it won't get worse.
Hair wise, it is interesting that you hair are still falling now that you have finished. I did not cold capped. I went for the bald look but since I started paclitaxel they started to grow back a little and I even had my first haircut last week-end. It was more to even out than a hair cut. At the moment, my hair are still following the pandemic restrictions and are social distancing with approximately 2 m between them 😄. But I am hoping that there will be some thickening in the coming weeks, so that I could drop my cap and walk around proudly with my 'shaved head'. After all, I never wore my wig, it was too warm and I sweat too much.
I hope your tummy problems will get better and better and that will enjoy more and more lunches and dinners out. Like you I am sticking to the outdoors rule. I don't want to jeopardise the course of treatments by getting a cold or Covid. Sweden is going to ditch all restrictions on 29 September. It is a bit scary although I have to say, here in the mind of people COVID is over. There are almost no one wearing face masks (well not many ever did as it was only a recommendation for the tube in rush hour and only came this April) and there is almost no alcohol gel at the entrance of store. I even got annoyed at the hospital where staff go around with face masks and when the alcohol gel dispenser were empty twice at 8 am. On the positive side there is a high vaccination rate and since at least 15 % of Swedish population (probably more as testing was rubbish at the early days and now testing is very low) has been infected, si there is some kind of immunity. But still, I am not confortable with the lifting of restrictions and measures. Btw, will you get a 3rd dose of vaccine in the UK? Here in Sweden it seems that the cancer patient might not get it or not for another 6 months. I am considering trying to get in France instead, as I know that my immunity is not optimal as I got both doses during my chemo.
Thank you for your kind offer. If I can train up to run a half marathon by March, I might take it and visit you in Cardiff.
Have fun at the parkrun on Saturday. I can't run the hills any longer either, it takes too much energy, so I walk them up and enjoy the run down instead.
There are few fun races in Stockholm too in case you or the other ladies want to give it a try. There are two I particularly like because they are women only: Vårruset (5 km) and Tjejemilen (10 km). It is fun to run surrounded by up to 20 000 women, and they have categories from elite running to walk. I love to run side by side with ladies in their 80ies and mum with their kids in prams. It is more like a big party with collective warm up and picnic at the end (included if you register as a team).
Have a nice day
Fingers crossed for your MRI results today and for your blood values.
I hope that Boris and its descendants got the beaten of their life and reduced to nothing.
Lots of hugs
Thrush mouth common during chemo, usually fluconzole tablets clear it up ok ❤️👍hope it’s sorted soon 💕💕✨✨Shi xx
Yes, my oncologist actually said to me 'that chemo uses nasty, nasty drugs' but then cancer is a nasty, nasty disease.
@gardengirl200 Yes I think thrush is quite common with chemo, hopefully the Gp will sort it out for you.
@Michelle21 I did speak to my BC nurse and she thought it might be thrush as apparantly you can get that in your throat after chemo! who knew! But she said to go to the GP so he could take a proper look, so Ive made a GP appointment. I guess if that is all it is, I've got off lightly xx.
@gardengirl200 @Glad the implant info helpful. I don’t have a throat problem but my gut problem also causes me to burp a lot. I’m thinking these are hideous chemicals that kill our cells, damage our veins and hopefully kill our cancer and whilst doing all of that other parts get inflamed. When did you finish chemo? Have you called your treatment line to see if they can give you anything? Apparently we are still under our chemo units for 6weeks post chemo. X
@Michelle21 Yes, I start radiotherapy on the 20th. I didnt know that re implants and radiotherapy so thank you for informing. I suspect big wait here too for the DIEP op.
I would be up for a run one day for a BC event.
Re docitaxel etc side effects, I still have the 'burnt' feeling over my mouth with my tongue etc having a white coating ( presumably due to 'killed' skin cells) but it is getting better and my sense of taste is coming back. But ( and I hope this isnt too much info) just as my mouth is getting better, I feel like it is 'tight' when I swallow, like I can feel the swallow more than usual ( if this makes sense) and I am burping which I never usually do. I expect this is simply because the lining of my throat has also been impacted, but has anyone else had this experience??
i am now two weeks from my last paclitaxel so thought I would report how I’m feeling. Re SE’s I still have a weird taste in my mouth but not as bad, the neuropathy on my toes isn’t hugely different but not having any pains at night, my finger tips are definitely less painful. I cold capped but my hair is still falling out. Also I have a bloating in my abdomen particularly after eating. This isn’t a standard SE apparently and is better than a week ago but not gone. On the whole I feel good and much more like me again. I’ve been out for lots of lovely lunches and dinners although I’m sticking to outdoors as I’m still worried about Covid/immunity especially as I have surgery yet to come.
I saw the surgeon yesterday and all went well, he agreed a double mastectomy with no recon for now was a sensible choice for me. I should get a call with the date today.
@Love running I love your running analogy. I like you had to draw on all my strength to get through the last 3 treatments. I felt as though I was falling to bits each week but you get all of your strength together and get through it. It would be great to see you in Cardiff, you will have a room here to stay if you wanted. It would be amazing if everyone from here met up and walked or ran one of the BC events. I would be there for sure!
I am going to attempt parkrun on Saturday, I am so excited about it even though I might not be able to run up the large hill in the middle! Wish me luck!
@TicTok 🤞for you MRI results, I hope they are good and that your bloods show you are ready for another blast at Boris.
@gardengirl200 I was told yesterday that implants wouldn’t be an option for me as I have previously had radiotherapy. Apparently implants never work very well after rads, so the only option for me is the DIEP which is where they take tissue from your back or tummy and move it to your breast. Here there is a 3 year waiting list which is ok for me as I would like a 3 year cooling off period after everything. Are you having rads?
@Cumbrian Lady body shaming really says more about the person who has said it than you.
@Coastal how are you getting on post chemo? @Purpledaze how are you doing?
@noodledoodle hope you are still getting on ok with the carboplatin, presumably you are almost at the finish line now? I hope it is ok for you.
@amy46 well done on the 5k, keep going!
And to anyone else who may be reading this, have a good day xx
To all you ladies I have just been catching up with the weeks posts as I have had my best week I have been out and about enjoying the lovely weather …. You ladies are so inspiring and been through so much with your opps already done and the hormones and the sweating , insulting people 😡my hat goes off to you all….. just been for my bloods I hope to find out tomorrow my MRI results , not sure my bloods will be ok as the docetaxel upset my bowels and nothing much has stayed in 🙄….i feel after reading more about docetaxel I should embrace it even though it’s bloody horrible as hopefully will finish Boris off and any babies the beast might have produced .
love to you all xxx
Thank you for you kind words and for all the cheering. It means so much to me, I feel so much better today.
I am glad if I could give you the confidence to put back on your trainers and give it a try. Just imagine, I am standing next to the road and cheering you.
What you describe feeling even more alive and uplifted is exactly how I feel when I run despite the tiredness and the pain. I do sometimes cry while running because of this feeling. It reminds me that it is still me, I am still there and I still can do the things I want and love.
I have a dream that we ladies in this forum meet at one of the BC awareness race and we run/walk together as team. A team of amazons, tsrong and beautiful women.
Keep running, keep walking, keep cheering, keep fighting one day at the time.
Love you all,
Wow @Love running , that is such a beautiful analogy. You write beautifully. You absolutely will get there. You and @amy46 have inspired me to get my trainers out tomorrow and see how I get on. I’ve not run for 4 weeks cos I found the docitaxel hard, but I think I will make a start getting back into it. @Cumbrian Lady I echo what @Love running said about the body shaming. I don’t understand why anyone would do that. It must come from a place of their own unhappiness. Happy people are generally not horrible.
take care everyone xx