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MAY 2021 CHEMOTHERAPY STARTERS

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

I hope you could go home and that you can rest now.

As Sherk says: 'better out than in' and I am sure that the nurse was glad you missed her😉

Wish you a good night of sleep

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

I totally understand why you didn’t tell your mum. It’s an interesting thing but at the beginning of diagnosis so many people said to me ‘it’s all about you now, you must concentrate on yourself, don’t worry what others think etc’ but I quickly learnt this isn’t not really true. So much of it is about managing other people’s worries and fears and about how they cope. My dad has some mental health issues and I did consider not telling him as I find my worry for him has escalated now. I think we all

just do what we do for the best reasons at the time. 
The midsummer celebration sounds amazing. I love the longer days. 
I am anxiously awaiting covid pcr to see if I can have my chemo on Thursday. My daughter tested positive on Saturday and is now isolating in her room away from me which I’m finding really hard. I don’t feel quite so great physically this week after the added Carboplatin last Thursday. Not awful just a bit fluey. Did anyone else have that?

I am so happy for people here that you are coming to the end of your treatments. It gives me hope for getting through. Each day feels quite long at the moment especially now I can’t have cuddles with my family. 
I hope you all find something to make you smile today xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Ladies thanks for all of your positive vibes all went well with the op. I did manage a bit of projectile vomit narrowly missing the nurse, oops! But felt much better after it. 
looking forward to breakfast and to going home. Xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

I totally understand why you didn’t tell your mum. It’s an interesting thing but at the beginning of diagnosis so many people said to me ‘it’s all about you now, you must concentrate on yourself, don’t worry what others think etc’ but I quickly learnt this isn’t not really true. So much of it is about managing other people’s worries and fears and about how they cope. My dad has some mental health issues and I did consider not telling him as I find my worry for him has escalated now. I think we all

just do what we do for the best reasons at the time. 
The midsummer celebration sounds amazing. I love the longer days. 
I am anxiously awaiting covid pcr to see if I can have my chemo on Thursday. My daughter tested positive on Saturday and is now isolating in her room away from me which I’m finding really hard. I don’t feel quite so great physically this week after the added Carboplatin last Thursday. Not awful just a bit fluey. Did anyone else have that?

I am so happy for people here that you are coming to the end of your treatments. It gives me hope for getting through. Each day feels quite long at the moment especially now I can’t have cuddles with my family. 
I hope you all find something to make you smile today 😊♥️

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

good morning @ michelle21

I hope your op went fine yesterday and that you are recovering well. 

lots of gentle hugs for a speedy recovery ❤️‍🩹 . Take care

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @delly 

How could I miss Alicia Vikander, she is Swedish!!!! And I like her as an actress too.

I wish I would look like her or one of the others instead of a hybrid between yoda and a teletubbie. 😂😂😂
My hair has started to grow but mostly  like a crown around my head like a man going bald. My daughters had a good laugh last night about it. I love how they are cool about it and not ashamed at all of their mum’s look. My youngest had a friend dropping by on Friday and I forgot to wear my cap. Jeanne did not mind at all and her friend neither. I love kids, they don’t care.

Regarding my ACL, I ruptured it skiing too, February 2020, a little low speed fall on an ice patch. I did not feel much pain at the time and believe or not I tried to first ski down and then walk down the slope before realizing that my knee did not hold my weight any longer… fell three times before accepting to have the rescue get me with the snow scooter. Stubbornness is one of my qualities, I guess. It is only once at the doctors’ office that the pain kicked in. 😱😩😩😩😩

Unfortunately and fortunately, covid kicked in too and all surgeries were postponed. I did not get mine until end of October 2020. I say fortunately because I went through rehab and it was the best thing I did. My physiotherapist is a rock star. She was supporting me and pushing me exactly how I needed. I managed to come back in good shape (could even run by the summer) before the surgery. This meant that after the surgery, my rehab went super fast and started slowly running again beginning of February 2021. Then I got BC, but that’s another story. The surgeon was great too, I got a full ACL replacement, she even showed me the video of the procedure. So cool (I’m a scientist so I like this kid of things) when she pulled through the knee the new ligament and when she cut the remaining old one. As soon as I am done with radiotherapy I will go back to my rehab to finish it. I have tried to continue my rehab exercises myself through chemo so I hope I have not lost too much.
I just booked a skiing holidays in February  2022 with my family. I am not sure if I will ski downhill or not.  I will give it a try at least. Otherwise I will return to snowboarding or to cross-country skiing. I love skiing so I hope I can overcome the fear. 
It is nice to hear that after 25 years your knee is still strong. I hope it will be the same for me and that I can keep on running. I do feel my knee is different but it does not prevent me to do anything. 🤞🏻🤞🏻🤞🏻


Have a good day

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 
Good luck today. Send you lots of strengths, positive energy and vibes. 💪🏼💪🏼💪🏼💪🏼

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 all the very best for your op tomorrow - will be sending strength, energy and healing vibes through the air waves! xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal I opened a bottle of red this week too - I confess I found it absolutely delicious! The problem with living alone ( or in my case with a 16 year old) is that the responsibility of finishing it is all on me! I'm treating myself to a single glass each night but will hopefully leave enough to make a stew to take through to my son at Uni. Opening a bottle will not be a weekly occurence (unfortunately) ! But one has to take pleasure in the small things 😊

Well done you for getting back to work. I wonder if I'm being a bit of a light weight waiting until after my radiotherapy. I'm a partner in a law firm and my partners have not put me under any pressure timewise. In fact (typical Scottish men?) they have not even raised the topic with me - I just keep on getting paid. Does anyone know what you would generally get in the public sector?? Is it 6 months full pay, then half pay? I plan to get back soon after radiotherapy with a phased return so that I am totally up and running by Christmas. But this is the first time off Ive had (other than babies) in 30 years. God, I needed it. In fact one of my first thoughts after I was diagnosed was, great, now I can have some time off work. 😂 Ridiculously revealing on my career. The thing is I can do that job, and I dont think I could do anything else. I would like to turn my experience of getting though a sudden/unexpected divorce and cancer to help others facing similar challenges but that would usually be unpaid work/volunteering and the reality is as a single mother ( funding two kids through uni on my own) I need to be paid. I do sometimes worry that my chemo brain might let me down once I get back to work. Have you had any issues with memory etc? 

 

I also worry about facing colleagues although generally I think cancer/chemo has made me braver. I lack confidence too in some areas of my life but now I just think f*** it. If I can face cancer, I can face anything. 

@Michelle21 - All the very best for tomorrow . 

 Fleur xx 

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hope everyone is having a good weekend, it's nearly 3 weeks since my last chemo and I'm feeling so much better.  I've been motivated by you all to try running and have started the couch to 5K, which feels really positive - it's been really good to get me out of the house as well as I've become a bit of a hermit (not a good thing).  It's made a real difference reading your positive posts - thank you! 

@Love running yes, that's exactly how I felt when my colleague was tearful with me - the shock they felt seeing me and the confirmation that I look different.   It did really shake my confidence (and I do struggle with confidence generally).  However, I've now got over the first couple of team meetings on zoom - I've tried to be resolutely positive and they've now started to treat me normally which is a relief.  It's actually made me feel a bit more bullish about my lack of hair and I've started to leave my hair coverings off.  I've got a v thin covering of grey hair with shiny bald patches on my crown, and if people don't like it I don't really care!  So... I'm embracing my new look with a bit more bravery now.  

@Michelle21 really good luck tomorrow with your op, I will be thinking of you and hope it all goes smoothly. 

@gardengirl200 Yes!  I found it really upsetting - reading it after the last chemo was v stressful - she has a manic tone which really brought me down as well, and like you I need to believe in my Oncologists and conventional medicine.  I've got the Complete Guide to Breast Cancer and have re-read that - much more balanced and objective.  I've done the same as you, foodwise although have been enjoying tea and coffee again after not being able to stand it during chemo.  Also had a glass of red wine for the first time in months last night - actually didn't taste nice which was a disappointment!   I start radiotherapy on the 27th - good luck for you tomorrow!  I'm started letrozole also this week.  

@Sammy73  thank you for your kind words, I'm so sorry to hear about your shingles, I hope you're okay!  Awful to have to postpone any treatment, I know how emotional that is.  It did feel so amazing to do my last one and get the hideous pic line out - hoping this last week wizzes by for you! 

Thank you again everyone! for all of your bravery and your wise words, I hope everything is going as well as it can be for you all.  

Lots of love Nicki xxx  

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

All the best for tomorrow. I think I was so chilled from isolating for 4 days b4 I was ready and felt so glad after it had happened. Be your strong self and you will be fine xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok so glad to hear, I felt so much better being in control and ready. So so pleased, 1 more to go for me!!! Cant wait for a planned break b4 radiotherapy xxx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks @TicTok  I am looking forward by to getting it done. Good to hear you had a better time on docetaxol. X

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy 73 …..just to say thank you for the tips of dealing with Docetaxal 👍 had a much easier time ….. thanks ever so much 😁.

hope all you ladies have a good weekend xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michelle 21 I wish you all the very best for mon , hope all goes well for you xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @delly 

😂 no problem, its easily done!

Thank you, I am having a nice weekend, although i wish I’d got some face masks and feet masks in. I could of made it a real pampering weekend as we are stuck at home! 

Thanks again for sharing and supporting 

Michelle xx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi again @Michelle21

Just a quickie to say, sorry, I got you mixed up with love running, ref your friends friend who lost her daughter at 16.

I sooo hope all goes well with your op on Monday. I'm sure you're being so healthy will stand you in good stead for your healing and recovery. Hope you have a restful weekend. Cosset yourself, flower.

I'll be thinking of you 🤗 ❤️

Lots of love to you all, DoolallyDelly xX❤️Xx

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running well Done on your 10.7k, it is true running with friends does make a run easier, chatting is a good distraction.  Good luck with the Forest femmes I hope they are able to help you set up a group.

I would be more than happy to travel to London for our meet up next year, I’m looking forward to it already! Mind you my diary is pretty empty at the moment! I’m happy to help organise it as well. 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi again, brave ladies

@Love Running - Thanks for your thanks, darlin. But really, I'm only giving praise where it's DESERVEDLY DUE ❤️ But of course it's leaves you/us with a huge empathy for any other women having to go through this gawd awful Ffffflippin disease (exchange that F word for a less polite one!)  as you all are on here. I've certainly found I'm faaar more sympathetic and compassionate towards ANY one going through major struggles, be they physical ones, or, since my own major probs with Bipolar - mental ones. I don't have kids, but it must be one of the worst things to lose a child at a any age, whether from a fatal disease or tragic accident. But to lose an otherwise physically healthy daughter at 16 to suicide. Jeeeez - your poor friends friend. My brother hung himself 2012 and he was 56, so at 16?!! My god. What a horribly dreadful thing to be left with, have to deal and cope with. Leaves you with a load of "If Onlys" - if only I'd known how bad he/she was, if only he/she had said something, talked about how bad they'd been feeling.

Don't forget to add Alicia Vikander in Ex Machina to your list of stars without any or little hair. She looked stunning 😊 Even though it was "deliberate", as opposed to a side effect of treatments that many of you are going through. Uh-Oh, Delly's bra's coming off again to you all again! lol 😘

Incidentally, love running, have you had your torn knee "cruciate ligament" fixed?? I had an ACLR op (Anterior Cruciate Ligament Replacement) in 1995. It was fantastic. The surgeon who did the op (am in S. Manchester area) helped "pioneer" the procedure, so I felt myself extremely fortunate and honoured. Even more, when he told me as I was lying on the op "table", that I was his first "woman" - to give the operation to that was!! 😃 Often a male footballer injury, mine was from a skiing accident, and needless to say, I never wanted to go skiing AGAIN!! The operated knee is actually stronger than the other one 😍 Been absolutely brill.   

@Michelle21 and @Cumbrian Lady - Michelle, I'm sooo pleased your appointment went so well, with a different surgeon. And Cumbrian Lady, that you had a much better experience, with a sudden and fortunate change of surgeon from your original one, who didn't evoke much confidence. As if it isn't bad enough, hey. Despite my not having a much wanted immediate recon with my 1st, he was a lovely guy, and did a great job. Many doctors and medics have often remarked "What neat scars" when I've HAD to take my "top", and "bra" off (for, not TO as you all) for various checks 😆

Much love to you all, Dellywelly  x X ❤️ Xx      

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46 I have also said amongst friends that I am the fittest of the lot and thought doing all of the right things seems to have got me nowhere. Like you I have myself a talking to!  It is easy to look at other people and wonder why I have cancer and they don’t and I was having that exact thought when I was walking with a friend in the park not long after my second diagnosis and two women similar age to me jogged passed chatting. I was so envious of them with their perfect lives (in my head). Once they had passed my friend told me that last year the daughter of one of the women committed suicide, she was only 16. That has to be the worst thing in the world. It made me realise I don’t really know what’s going on with other people and I just have to try and be grateful for what I do have. It’s not always easy though especially when I hear friends moaning about trivial things! 😠

I changed to vegan when I was diagnosed in March. I agree with you I don’t think it changes prognosis , I didn’t eat a lot of meat before but like you say it made me feel in control of something when everything else seemed so out of control. 
Im back to eating fish now but we haven’t gone back to milk. 
On paper we sound quite similar don’t smoke or drink, healthy eaters and runners both with TN BC. I strongly believe that being healthy helped me through chemo in 2018 and recently, and I’m sure running or walking if you can’t do a run will help you.

I have been through the carboplatin regime so if you have any questions I’m happy to answer them if I can. 

Michelle xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 ps - also shaved my head after 2nd chemo to no 2. It fell out fairly soon after that but not completely, even though I didn’t cold cap. I left little dark hairs wherever I went over a few week period. But I have a black lab so I was never sure whose hair was whose! 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46my kids are 18 and 16 so a bit older  than yours. I thought long and hard about how to tell them.  I am a single parent, my husband having left very unexpectedly ( for me and the kids anyway ) 3 years ago. I decided to wait until I had all the results from the BC clinic ( my BC is lobular so I needed an MRI scan at the outset) so that I didn’t worry them until I had all the info and I was as able as possible to answer questions they had. I told them 2 or 3 days before my mastectomy and I have always been very positive on the info I have given them. I knew nothing about BC before diagnosis  and it is a steep learning curve. I realise in some ways I am lucky as I had my mastectomy at the outset and was able to tell my kids ( echoing what the BC nurse told me) following the mastectomy that I am ‘now cancer free’ and the follow on chemo and rads being belt and braces. Of course I know it’s not that simple; I was stage 3 with 2 lumps, the largest being 50mm and positive lymph node. I think ( one can never be sure) that the kids  aren’t  worrying too much. As teenagers they are fairly self absorbed. So I am doing all the worrying for them. I did tell my daughter’s school. My son was at Uni. I am glad your kids are coping well. I suspect they take the tone you set.

Have you been following Rosamund Dean’s articles in the Sunday Times? I’m fairly sure she had triple neg BC snd her articles in Style follow her journey. I found her really inspirational and I now follow her on Instagram. She was diagnosed last December. First article in Jan I think.  I like surrounding myself with positive women!  ( hence being in here!) . Xx 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @delly 

What a tough journey you had. Despite all the downs you have gone through and the brown c... coming your way, you are there cheering for us and sharing your journey, knowledge and wisdom. Thank you.

I am looking forward to be like you a xxxx year survivor telling other women how awesome they are and to keep on fighting. Thank you.

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @delly thanks so much for your reply. It’s good to hear from someone else with two primaries, especially someone who is still here so many years on. 
It sounds like you have had a really difficult time getting a recon. I completely understand about life getting in the way, I lost my mum in June whilst I was having chemo. I spent so much time crying I didn’t know if I was crying for me, for her or for both of us. 
I don’t have the option of  implants as the surgeon said they never really get good results when out in post rads. I have a lot of rad damage on my right side. Here they don’t do immediate DIEP and the waiting list is 3 years but actually I am fine about waiting because I want to spend those years travelling and living life! 
It’s good to hear you don’t have any problems with having both arms full ANC. I have just visited the lymphoedema clinic this morning and she said there is only 1% difference in my arms so nothing visible. I am already very protective of that arm and will continue to with the left side too. 
Thanks again for your reply it’s always good to hear the story of a ‘survivor’ especially as like me you have been unlucky enough to have it twice.
Michelle xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

All the encouragements from your side about the running club for BC patients are making their way into my brain. I will dig into it. Most of the physical activities are post cancer and on the rehab side. From my reading, I found other women that run through chemo, but it seems like a lonely activity. I did the same, I run alone until now.

This morning I went out with my old running buddy. I had not run with her because I am so slow nowadays.  We used to talk all the time while running (2 French girls running and talking about their Swedish husbands 🙄) and I thought I would not be able to talk and run and it would ruin it for me. You know the feeling of the life before which is gone... But this morning I reached out  to her and we run slowly as before talking all the way. I was quite breathless at times and asked her to do the talking and I answered by mumbling, we also walked up all the hills. At the end, I run 10.7 km with her. I am so proud of myself. It comforted me that in teams or group, it is easier. So, it is worth looking into creating running club for us.

There is a female only running group in Stockholm, called 'forest femmes'. It is free to join and they run in the forest every Wednesday evening together in group depending on your abilities (from beginners to advanced runners). The group started because when it gets dark in Sweden in the fall and winter (and it gets really dark, believe me), women did not feel running alone in the forest. I will reach out to them and see whether I could branch out a group.

And if we are serious about running together next year as a 'May starters' group in one of the BC event, where would it be most convenient? You are all spread across the country (Wales, Scotland...) and it would mean some travelling. Would London be the easiest to reach from across the country? and from Sweden 😀

Anyway thank you all for your support and encouragements. I got so much energy from you. I cannot thank you enough.

Love to you all

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46 

Same here for me - my 13 (then 12) year old shaved my head when the time came. At the moment, I was quite emotional. Like @TicTok and you I left the stubble (cut it to 3 mm). According to my kids, I look cool with my cow pattern, bald patches and hairy patches. It took may another 2, 3 weeks to get it more even. But I never went all bald and I never shave it fully either.

I became a cap fan... and embrace the hiphop, skater look 😂 at 48 year old - my kids love it, so I try to owe the look.

My hair has started growing back lately - now at paclitaxel 10, it starts to look almost like a hair cut again. Still missing the thickness (my hair are still social distancing - one hair every 2 m). But I see a change every week. So I have decided that as soon as one don't see the scalp any more (and my huge scars from a sledge accident when I was 10) I will go capless and try to embrace the 'Sigourney Weaver in Alien, Nathalie Portman in Vendetta or Charlize Theron in Mad Max'... Just to say that I am short and curvy so the similarity with these women stops with the hair cut 😎

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Amy yes my husband shaved mine just after my 2nd chemo , as like you left the stubble but I didn’t actually go totally bald as the stubble stayed there I also use oil on my scalp , just starting to grow now after my 6th chemo x

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I have one more question for you lovely ladies. I shaved my hair to a grade 2 at the weekend as loads was coming out. How long will it take until I’m completely bald?? I was advised not to shave to the skin as you can get problems around the follicles - red and bumpy apparently. But I’ve got this lovely scalp oil to use and I’m wondering how long it will take for the rest to come out. Did any of you do a total shave? Any problems? Thank you x 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running 

Thank you. I am hopeful it will do the job for me too. So far no real side effects from the injections so who knows maybe the running does help! 
I had a great run in the rain yesterday. Increased my distance just a little bit. Xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

Your post really struck a cord with me when you said you answer the health question with ‘I’m totally fit and healthy apart from the fact I keep getting cancer’

Apart from my triathlon loving husband I am probably one of the fittest people I know!! It’s so bloody unfair!! I eat well, no red meat, plenty of fruit and veg, exercise regularly, pretty much hit 20,000 steps every day, don’t smoke, not much alcohol. Living a healthy lifestyle was a big focus for me and then wham. BC hit me like a tonne of bricks. It really made me question why I bothered. I kept walking past people smoking thinking why me then? Even getting a pedicure I had to tick a box saying I was having treatment for cancer which really upset me. It felt like I had to completely reassess who I was. My image of myself as fit and healthy had gone. But eventually I had a word with myself and decided to try and be a fit healthy person having treatment for cancer. So I looked to improve again my diet, cut out alcohol and have tried to keep up with my exercise inspired by some of you ladies on here that it was possible. If I’m honest I don’t think becoming vegan or completely cutting out alcohol has any impact on prognosis as long as you are eating a well balanced diet. For me it is more about regaining some control when I felt totally at sea. Anyway I’m rambling on - been up for ages as once i am awake that’s it, the old brain goes into overdrive! Have a good day xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 

Morning. All of this is scary but I find things easier to deal with when I’m well informed and I find all you ladies here inspire me with your strength. It gives me lots of hope to see you coming to the end of your chemo journeys. I’m ok with the injections. I’m a doctor myself so lots of the medical things probably bother me less. I have been lucky so far and had few side effects although tomorrow I get the double whammy with Paclitaxol and Carboplatin for treatment number 4 (I’m having 12 weeks Paclitaxol with the Carboplatin every three weeks then 4 cycles of EC not sure why it’s this way round as from

what I can see most people get the EC first)  my cancer is TNBC which really scares me for the same reason one of the other ladies mentioned - it could come back elsewhere and I won’t know until I get symptoms. I didn’t have lymph node involvement but even so it’s bloody scary. I’ve had to put this in a box to deal with later as I need all my focus for the chemo at the moment. I have a lot of things in boxes at the moment!

How old are your children? Mine are 11 and 13. I have been in awe of how well

they are coping so far. It helps I think that I haven’t looked or felt poorly yet. Xxx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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  

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Fleur xx 

 

 

 

 

 

 

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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.

Poppy xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Oops I forgot to say I am also up for meeting everyone at a run when we are through our various treatments xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Help me, it's like the walls are caving in
Sometimes I feel like giving up
But I just can't
It isn't in my blood
 
Both songs underline the strength I have to get through this. 

@TicTok great news from your MRI, Boris doesn’t stand a chance with 3 more chemos. Regarding it coming back, yes we all have the same fears but I found that the further away from all of this I got the fear lessened. I was also Her2 last time and I had a pathological complete response which it sounds like you are heading for. As time went on that gave me a lot of comfort and confidence in the future. Just to confirm I have a new primary cancer now with a different pathology it’s not the Her2 returning. 

@Love running only 2 left nearly time to 🥳 I hope they are easy on you. A picc free shower is really something to look forward to! Your idea to start a running club for cancer patients is great and has made me wonder what I can do here. Once my treatment is over I might explore this further as I have good contacts with the local cancer hospital and not just because I am a regular there! I have done a few fund raising events for them. 
I also live a healthy lifestyle but have  still had BC twice, we can only do what is within our control unfortunately cancer isn’t. If I am asked by health professionals if I am healthy I always say yes apart from I keep getting cancer! 
I second what the others have said your posts are very inspiring and full of positivity and fun! 
I love the quote ‘donut and the confidence will follow’ I will tell my daughters this!
Keep posting here @amy46 and we will cheer you through your chemo! 
I had 3 filgrastim each week too and didn’t have any delays for 12 weeks of Paclitaxel. Delays aren’t inevitable, do what you can to look after yourself but like much of this it is down to luck if the draw.
Michelle x

 

 

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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...

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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,

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok @amy46 

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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. 
Michelle xx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi girls

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