Hello I'm New

HI Samantha, I'm Sarah, turned 47 this week and diagnosed with TNBC at the end of November last year!  I'm still waiting to start radiotherapy next week and my treatment will be finished.  I know what you mean about the darker evenings, I really struggle with them too! I always try to go for a walk in the middle of the day, even if I'm feeling sluggish as I find this lifts my mood :) Have you tried using a winter blues (SAD) lamp? i got one least year and found it brilliant  The other thing I like to do is to plan days out to look forward to when the Spring arrives.  What interests/hobbies do you have?  Great to hear that you a good group of friends and neighbours.  We moved back to Cornwall just before i was diagnosed and then Covid hit so I've not been able to get to know anyone in our village yet.  I hope you are doing well health wise and would love to chat if you would like to! xx

Hi Sarah,  thanks for your reply! I would love to chat. My treatment was supposed to end after rads, then they added Cape in the mix just to be sure. I'm gonna take all I can get cos I don't want the unwelcome lodger back!

I haven't heard of those lamps, where could I get one?

My hobbies are reading,  music, cross stich and i used to go to ((bounce)) to keep fit but not doing that atm.

I'm working from home and have done throughout treatment  , only mornings but I am so fatigued I don't usually do much after.  I have been for a few walks though and you're right,  it doesn't your mood!

How many rads are you having? I had 15 plus 3 boosters.  What stage was your cancer? So good to find someone same age as me and in a similar situation.

I love Cornwall,  my boss has a cottage near Mevagissey and I went there 3 years ago. Lovely place. Hope you get to meet people in the village soon xx

Wow, you sound very busy Samantha!  I love reading too (mainly psychological crime fiction and soppy love stories!) and am also getting in landscape photography as there are so many lovely places to photograph where we live.  Mevagissey is beautiful We (husband Nigel and son William) have a caravan in Looe and love going there at weekends to chill out on the beach.

What kind of music do you enjoy?  I love all kinds, classical, chart stuff and anything by First Aid Kit.

I would love to be good at something creative like cross stitch -  have you been doing it long? I'm thinking of trying some jewellery making but would probably need to go on a course to get started. We have collected loads of sea glass on the beaches and it is so beautiful.

What work do you do?  You did well to carry on throughout treatment but I bet that having a focus on something not related to C really helped?  I used to work as a children's librarian, then a conservation assistant for the National Trust (which I loved as history and all things old fascinates me) but had to give up work a couple of years ago to support William who has Autism.  I really miss working though and hope to get a part time job again once treatment has finished.

I got my lamp from the John Lewis website https://www.johnlewis.com/john-lewis-partners-block-led-table-lamp-white/p3473413?sku=237426413&s_ppc=2dx92700055674859822&tmad=c&tmcampid=2&gclsrc=aw.ds&&gclid=EAIaIQobChMIrObS-uOD7AIVUObtCh1sGgkPEAYYBCABEgL7F_D_BwE. It's one of the cheaper ones but does the job! If you use it in the mornings it really seems to set you up for the day

I'm having condensed radiotherapy over five days and then an additional five days of booster rads due to "being young"...although I don't feel very young at the moment... ha ha. My tumour was fairly small (19mm) with no lymph node spread so I think it would be classed as Stage 1??  I try very hard not to go on doctor Google and freak myself out...failed miserably at the beginning of this nightmare but slowly getting better!!  How have you found the Cape?  I begged my oncologist to let me have it but she was adamant that it wasn't necessary for me.

Have you got anything nice planned for the weekend?  Hoping the weather improves...very stormy down here last night so we will probably have to go and rescue the awning at the campsite!!

Hope you have a good day Samantha...don't work too hard! Sarah xx

Hi Sarah,  thanks for your reply. Hope you're well. Thanks also for the link to the lamp, will take a look.

I've had a hard day at work today and worked more than I should have. When I do this I get in a lot.of.pain round my surgery site but as I am a payroll manager and was on my own today, I had to finish it off. I work in an accountancy practice (from home atm) and managed 250 cloent payrolls with my 2 other assistants.

I love reading any kind of books but mainly true crime, thrillers and easy reading books. I am currently reading The  Butterfly Room. I'm enjoying it.

My music tastes seem the same as yours, I like a bit of everything really except heavy metal. Haven't done cross stitch for a while but have a few pieces I did framed around my house. I did counted oss stitch with no.printed pattern on the cloth and now my eye sight isn't what it was, its harder to do. Had been doing it around 20 years (makes me sound old ).

Good luck with your rads. I felt (and still am) very tired but then I was also travelling an hour each way every day for 18 days which didn't help. I live in Hertfordshire and was travelling to Watford which was around an hour each way.

I'm doing good on Cape. My one said it was my choice as my.spread was tiny. If it was 2 he said he would have recommended it, if it was 1 he would have said not to. I was 1.5mm, in between, so my choice but he was urging me to go for it. As I said, I wanna throw everything I can at it. I take 140 pills every 2 weeks then have 1.week off when it's the usual blood tests and onc telephone call to see how I've been. My tumour was 20mm in right side so nearly same as yours and I found it because I had a dream, not because I checked,  weird eh? 

Waiting for a mammogram and ultrasound appointment too as its nearly  year ago I was diagnosed now.....

My mum and sister are coming to visit me tomorrow not heard from my.mum in months, she's very selfish and has her own 'issues'. Are you up to much?

I hope William is ok, must be hard with not being in the best health. Hopefully once your treatment stops, you can get a part time job.

You should try the jewellery making, it will be quite therapeutic I would imagine! You could then even sell some! 

Anyway, have a good weekend, take care, you can call me Sam if you like, I prefer that. 

Speak soon xxx

Hi Sam, sorry for not replying sooner and I hope your pain has gone by now!  It's been a hectic week down here..the awning did blow off on the caravan so we made a mercy dash to Looe, and I have had my first two sessions of rads.  So far so good, just a bit tingly and slightly pink but a breeze compared to chemo! Luckily only a half hour drive to the hospital so not nearly as tiring as your journey.

I hope your weekend with your Mum wasn't too stressful?  You have my sympathies as I have quite a strained relationship with my Dad who seems to think that our son is merely badly behaved and using his Autism to control us all!! Do you have a better relationship with your sister?  I've also got a sister, 3 years younger than me and she lives only 10 minutes away, although we don't see each other that often as we are chalk and cheese in many ways!  She had treatment for thyroid cancer 4 years ago which was successful so is happy to chat on the phone and does "get" how hard it can be mentally speaking (although she didn't have to face chemo luckily)

Your dream about your tumour is very strange...good job you didn't dismiss it and followed it up.  Did you feel a lump or any other symptoms?  I went to my GP on 2 occasions in the 18 months leading up to diagnosis complaining of a stabbing pain just below the breast and thickening of the breast tissue.  She wouldn't refer me for a mammogram and said it was just "glandular". We then moved to Cornwall and within 5 weeks a lump appeared almost overnight! Our rescue dog kept nudging my breast so I knew I had to get it checked out...the rest is history as they say!

I'm really glad to hear that you are coping well with the Cape Sam.  The peace of mind that you are doing everything to stay cancer free must outweigh having to take all those pills (although 140 every 2 weeks is a crazy amount!) I'm going to try and persuade my oncologist to let me go on it once rads are done.

How is home working going?  Must be quite strange not having the buzz of the office?  I'm relishing the peace and quiet now that William has finally gone back to school.  The hours between 9-3 fly by though and I normally end up crashing out in front of the TV after lunch.  My husband (Nigel) works from home as a self-employed music teacher (violin and piano) He has managed to move all his teaching on line since the pandemic and loves having no commute between schools :). 

Really hoping the weather improves this week so I can keep up my daily walks.  Are there any nice walks where you live Sam?  We like to walk on the coast but there are some lovely woods near us (Respryn Woods) as well as the China Clay trails. 

Well, I'd better stop now and make sure William is getting ready for bed.  He is such a night owl and I am not a morning person, ha ha, so Monday mornings are always a little fraught.  

I hope you have a good start to the week Sam.  Would love to hear from you when you get a moment.

Take care, Sarah xxx

Hi Samantha

Good news that you are doing so well with your treatment.  Everything is so out of sorts at the moment and with the evenings drawing in it doesn't help.  I'm only at the start of my journey but am realising that there is an amazing community of people out there ready to support and chat and that helps hugely?  

I hope you don't mind me asking you (and Sarah) about your treatment?  I was taken aback to realise that you have both been going through treatment for twelve months...... I was sort of gearing myself up for chemo but thinking that by spring perhaps I would be back up and running as normal!  Probably very naive.  I'm older than you both, just turned 58, and I was diagnosed following a routine mammogram four weeks ago.  I had a lumpectomy (they estimate approx 116mm on the ultrasound) and sentinel node biopsy a week ago, so just waiting to see the consultant this time next week to find out what my treatment plan is.  The surgeon said that they had got clear margins (although I was still dopey from the anaesthetic so didnt question too much) but I think I'm right that its pretty much guaranteed that they will treat TN with chemo?

Have you both been able to lead reasonably normal lives over the past twelve months?  

Hi Sarah, I haven't forgotten you, just struggling a bit as I have had to have my 19 year old dog put to sleep and am finding everything a bit too much so I WILL reply properly when i feel up to it,  I hope you're ok. Take Care, Sam xxx

Hi Sam, thanks for your email.  I'm so sorry to hear about your dog and that you are (understandably) struggling at the moment.  19 is an amazing age, you must have given him/her a wonderful life :)

I'm ok thanks, just the usual aches and pains.  I was wondering how you were doing. Please don't worry about replying until you feel up to it..just take one day at a time and I'l be here for a chat anytime you need one.  Take care, Sarah xxx

Hi Cloud123, 

I've just seen your message and thought I'd find out how you are doing?  I'm sorry to hear that you are struggling at the moment....I remember being at the beginning of treatment all too well  and it's perfectly understandable that you're feeling wobbly!  Sounds like you have a very good team to have already had your lumpectomy.  I had chemotherapy first (tumour was 16mm on ultrasound and then 19mm when removed. Although it was larger, the chemo had changed the tumour cells and I also got clear margins with no lymph node involvement) I finished active treatment last week, with my last radiotherapy session..so there is light at the end of the tunnel!

You are right that with TNBC it's highly likely that you will have 6 months of chemo, normally two different types as tumours tend to respond better to one drug than the other.  I had 12 weekly Paclitaxel, with Carboplatin added in every 4 weeks.  I didn't find this combo too bad at all.  I was more tired when I had the Carbo but my nausea was very well controlled by all the anti sickness tablets they give you!  I managed to do some light housework and take care of our son whilst hubby took over preparing the meals. We also had some days out in the Countryside (away from Covid risky places) So yes, pretty much a normal life for us, although I am lucky that I did not have to consider work as I am a carer for our son who has Autism.

The second drug I had was 4 lots of EC (Epirubicin and Cyclosophmide, sorry not sure of the spellings!) 1 every 3 weeks.  I must admit, this was a little harder for me, especially the first ten days of each cycle when I pretty much did nothing and completely lost my appetite as everything tasted strange. By the 3 week however I was up and about going for small, gentle walks and seeing family.

Everyone reacts differently of course but hopefully you WILL be able to have days where you feel pretty much ok and able to do things that want to do :) Chemotherapy is a bumpy road at times but it is doable and you will get through it...the time goes remarkably quickly in fact! One tip is not to look at how many sessions you have left but to cross off the ones you have completed. 

Like you and Sam, I hate the drawing in of the evenings too.  Do you have any interesting hobbies to keep you busy? I'm really into photography (my husband says I take way too many photos!) so am going to do some photobooks as Christmas presents this year.

If you would like to keep in touch, I would love to hear how you are doing and chat (about anything!) to help you through!  Take care of yourself and keep strong! Sarah xxx

Hi Sarah

I'm so sorry, for some reason I didn't see your response - I wasn't ignoring you!  Thank you for all the info on the chemo - its bewildering and I'm still trying to understand all of the abbreviations!  And congratulations on finishing treatment - that must feel wonderful, or do you feel a bit lost?  Hopefully very positive though!

I've done really well, the lumpectomy scar has healed well and the scar under my arm where they took the sentinel nodes out is also good, just a little bit sensitive if I walk too fast and it rubs.  I've found that putting a soft sock under my arm sorts that out!  The histology results confirmed that I had a Grade 3 invasive ductal carcinoma, 15mm with high grade DCIS with the whole tumour increasing to 20mm.  They got clear margins of 8mm or more and the lymph nodes were clear.  It sounds as if it was the same sort of size as yours?  I have had things done the other way round and I don't understand how they can now assess whether the chemo is working or not if there is nothing to reduce?

I've got my appointment with the Oncologist on Monday so I will find out more then, but I'm struggling to think about chemo when I feel so well and 'normal' at the moment!  

I've been working at home since March so have really just carried on as normal and hopefully will be able to carry on until I start chemo.  I'm considering taking six/nine months out to concentrate on myself, but also wonder whether it would be good to try and carry on working to give some structure to life!  The more people I talk to the more I think that is probably a bit of a dream.  We have been having building work done for the last five months so that has just finished, but in between cleaning up after the builders I like to knit and cook, and love my garden.  I have great dreams of painting as well, so in some ways some enforced downtime without any pressure would be good.

Take care, and thank you for the chat!

Kerry x